Today was quite an interesting one for me. It started out with a conversation at my son’s school. I think I approached the educator in an odd way, but the end result was quite positive. I ended up spending about 40 minutes talking with this person about my son’s IEP program. We discussed where he is thriving, struggling and what the plan is to get him ready for kindergarten. I found out that a lot of great things are happening for my son and also brought to light that there are still things that “need a lot of work” but are progressing quite well. I left school feeling like I was 100% on the same page with the “powers that be” at school and we are heading into the New Year with a great plan to keep things moving along in the right direction.
My next destination was a restaurant where I worked for several hours. Part way through my time here, a stranger came up and asked if she could share the table with me. It was now 12pm and the restaurant was quite crowded. There was not one table available and this stranger saw that I was working at a table alone, with space to spare. She had a service dog with her and kindly asked if she could sit down across from me so that she could eat her lunch. Of course, I immediately said yes. She kindly thanked me, sat down and commanded her service dog to lie down under the table. A few moments later the dog had her head on my foot and was looking up
at me. This stranger and I never exchanged names, only general conversation. She asked what I did for a living and then she went on to tell me about her service dog. The dog helps her b/c she is hearing impaired. This dog is supposed to help her hear the phone and other sounds that she may not be able to hear on her own. She went onto tell me that although the dog does not do the best job at what she was trained to do at times she loves her and can’t imagine not having her around.
What hit home the most for me from our entire conversation was that this dog has been in her life for 2 years and is someone she has grown to love, faults and all. Although this dog is not her son or daughter, she is clearly someone that this woman loves, depends on, counts on and knows will give her unconditional love no matter what. I could relate to this completely as I think about my kids and how much I love and depend on them to give me unconditional love no matter what. I know it is wishful thinking that this will continue for the rest of my life, yet as I sat back and thought about the last 5 years of my life, every moment of joy, pain, happiness and sorry has somehow revolved around one or both of my kids.
While driving to pick up my son from school, “The Wind Beneath My Wings” came on the radio. Out of nowhere, tears began to flow from my eyes as I hung on every word being sung by Bette Midler. As the song came through the car speakers I began to think through the years since I was married and then became a mother. Each memory led to another until I was connecting the words to my husband, children and the “village” of people that has rallied around me to help me ensure that my children get the very best life has to offer from a young age.
My oldest has taught me so much about life, love, challenges and how to “never give up” on what you believe to be right. My youngest on the other hand has given me a new meaning to the words “sunshine, love and mischief.” Both boys are teaching me how to be a little less serious all of the time, how to take the time to celebrate the little successes that may happen on any given day and how to appreciate what is right in front of my eyes. They have also helped me figure out when to stick with something, when to walk away for a while and when to just shut the door on a situation that is not fixable.
“You can’t control the things that happen to you but you can control the way you react to them.” I heard this quote today and think that is going to be my new motto. This has been a common theme in my life since our first born turned 9 months old. This is not a story I care to discuss on my blog, it is one for another place and time. What I will say is that a lot of things, both good and bad have taken place over the years and I now truly understand that there is only so much one can control. My “I must be in control of my destiny” mindset that carried me through my 20’s and most of my 30’s, has slowly started to crumble due to the obstacles I have come up against over the last 7 years. I have come to fully understand why each time life throws an obstacle my way, I have to take it with a grain of salt, learn what I can from it and apply it to the next obstacle that comes along.
My kids, my husband, my “little sis” and the “village” of people who rally around me are truly the wind beneath my wings.
Wednesday, December 14, 2011
Wednesday, December 7, 2011
A Walk Worth Taking......
This last year has been a whirlwind for us. Ups, downs, highs, lows and at the end of the year we sat back and realized just how much growth and progress took place from age 4-5. Not only has he learned how to communicate better, he has learned to make better decisions, process what he has learned faster, try new things and laugh a lot more. 2 weeks before his 5th birthday he said, “When I turn 5 I am going to ride my bike and stop sucking my thumb. He also said he would stop doing one other thing but it hasn’t happened yet. 2 out of 3 ain’t bad The fact that he had the ability to make those conscience decisions is a HUGE step forward for him. I couldn’t be more proud of my 5 yr old son!
It’s funny to me how many people are “non believers” in that there is a lot going on behind the scenes with our kiddo until they see it happening for themselves or read/hear about all of the early intervention we have done with him over the last 3 years. I have numerous acquaintances/friends that think other options would be better. Some even think that I should just let him be a kid and he will eventually figure it out. My response to them is this, “another option may be best for your child, but this is what is best for mine”. I will continue to fight for my son, advocate for my son and stand up for him for as long as it takes for him to do all of those things for himself. I believe that it is my parental right and duty to offer all that I can to my kids at a young age, so that they have a bright, happy and successful life in whatever they choose to do.
My son got a card from a “mentor/teacher” that worked very closely with him last year. The words he wrote moved me to tears. He said “he has never met another little boy as courageous as our son” He even let him know that the word Courageous means that no matter how hard or scary something is, that you always try and always believe in yourself. He said that he was proud of our son and believed in him. If it wasn’t for this person, our child would not be where he is today, interacting normally in society, without the high level anxiety and behavioral issues we have been working on for the last 3 years. This is not to say that we are “out of the woods” just yet, but instead to say that early intervention with the RIGHT person for your child sure does work wonders! I would do it all over again, despite the amount of money we had to put into getting the services. Our “shadow” was worth every penny and I will forever be grateful for the specialist who referred us to him and for the time and dedication he gave to our son. Always giving 100%, always open minded and always supportive.
As the years go by there will be many more highs and lows, successes and failures, yet through it all we will continue to move forward. A very wise “mentor” told me once that each time we take a few steps forward be ready for a few steps backward as well. He talked about how each time a new skill is mastered and the brain takes on more information there is always a good chance that an old behavior may resurface or a new one may come up. As we keep working with early interventionists we continue to see more happy times than sad, more smiles than tears and many more successes than failures. Any way you look at it - this is not a walk in the park BUT is a walk worth taking!
It’s funny to me how many people are “non believers” in that there is a lot going on behind the scenes with our kiddo until they see it happening for themselves or read/hear about all of the early intervention we have done with him over the last 3 years. I have numerous acquaintances/friends that think other options would be better. Some even think that I should just let him be a kid and he will eventually figure it out. My response to them is this, “another option may be best for your child, but this is what is best for mine”. I will continue to fight for my son, advocate for my son and stand up for him for as long as it takes for him to do all of those things for himself. I believe that it is my parental right and duty to offer all that I can to my kids at a young age, so that they have a bright, happy and successful life in whatever they choose to do.
My son got a card from a “mentor/teacher” that worked very closely with him last year. The words he wrote moved me to tears. He said “he has never met another little boy as courageous as our son” He even let him know that the word Courageous means that no matter how hard or scary something is, that you always try and always believe in yourself. He said that he was proud of our son and believed in him. If it wasn’t for this person, our child would not be where he is today, interacting normally in society, without the high level anxiety and behavioral issues we have been working on for the last 3 years. This is not to say that we are “out of the woods” just yet, but instead to say that early intervention with the RIGHT person for your child sure does work wonders! I would do it all over again, despite the amount of money we had to put into getting the services. Our “shadow” was worth every penny and I will forever be grateful for the specialist who referred us to him and for the time and dedication he gave to our son. Always giving 100%, always open minded and always supportive.
As the years go by there will be many more highs and lows, successes and failures, yet through it all we will continue to move forward. A very wise “mentor” told me once that each time we take a few steps forward be ready for a few steps backward as well. He talked about how each time a new skill is mastered and the brain takes on more information there is always a good chance that an old behavior may resurface or a new one may come up. As we keep working with early interventionists we continue to see more happy times than sad, more smiles than tears and many more successes than failures. Any way you look at it - this is not a walk in the park BUT is a walk worth taking!
Saturday, November 5, 2011
Life is like a card game
Life is like a card game………sometimes you have to bluff just to stay in the game
This week I received several emails I didn’t expect from family members. One was from someone I no longer speak to………..This person forwarded me an email I sent to them over 3 years ago. It was a “thank you for your support” email that I sent during a very trying and tough time in my life due to a family illness. The funny thing is he thought that reading this email would remind me of that time and change my mind on the distance and silence I chose to have with him well over a year ago. Much to his disappointment it did nothing of the sort. It just reminded me of how much this person uses situations to their advantage and thinks that no matter what their actions, they should be forgiven without asking for forgiveness or admitting any wrong doing. Unfortunately early intervention did not happen with this particular person. He never learned to take responsibility for his actions, figured out when to say “when” or admit when he made a mistake. I can’t point fingers any more nor change the past, but what I can do is my best to ensure that my kids understand right from wrong, learn to take responsibility for their actions and are respectful of those around them even when they may not necessarily agree with someone’s decision, opinion or action.
Then I received an email from yet 2 other family members talking about something they did and how they would have done the same thing for me. The funny thing about it was they didn’t do the same for me just 2 months earlier. When I called them out on it I was given every excuse they could come up with as to why they weren’t able to do what they said they would never do. Both rarely admit when they did something wrong and I know that their perception of reality is so far from mine that there is no use in trying to be rational.
After 37 years of trying to get all of them to see my side, I came to the realization that it was a waste of my time and energy. The best I can do now is live my life the best way I know how, learn from their mistakes as well as my own and do better by myself, my family and my kids. I choose early intervention every time over a life of frustration, fighting and tension. I believe that sweeping important issues under the rug never results in anything good. No matter how complex the issue, talking through it and working through it is a much better way to deal with whatever life throws at you.
Sometimes I think what if………….What if instead of having a fight and then forgetting it ever happened we all had sat down and talked about what we were feeling. What if I hadn’t grown up in a “my way or the highway” sort of family or had my “other family” to turn to when there were things going on at home I just wanted to run away from and finally what if I hadn’t snapped myself out of my own spiraling depression and got my act together. I spent 5 years falling deeper and deeper into a depression which I rarely talk about and the ironic thing about it is that maybe 1 or 2 people had any idea of what I was going through. Only those 1 or 2 people actually understood that I was feeling the way I was and acting the way I was b/c I felt like nothing I did or said was good enough and even worse, that nothing I said was taken seriously.
Almost 20 years after going through the worst time in my life, I am finally able to admit that I hit rock bottom and figured out a way to pull myself out of it. I guess you can say I found a way to turn lemons into lemonade. I was that card game, bluffing everyone out just to get through each day without having to let my guard down. However bittersweet it is, I don’t think I would be who and where I am today without my past happening the way it did and for that I guess I should be grateful I went through what I did growing up. I learned to take the good with the bad and turn it into something great.
This week I received several emails I didn’t expect from family members. One was from someone I no longer speak to………..This person forwarded me an email I sent to them over 3 years ago. It was a “thank you for your support” email that I sent during a very trying and tough time in my life due to a family illness. The funny thing is he thought that reading this email would remind me of that time and change my mind on the distance and silence I chose to have with him well over a year ago. Much to his disappointment it did nothing of the sort. It just reminded me of how much this person uses situations to their advantage and thinks that no matter what their actions, they should be forgiven without asking for forgiveness or admitting any wrong doing. Unfortunately early intervention did not happen with this particular person. He never learned to take responsibility for his actions, figured out when to say “when” or admit when he made a mistake. I can’t point fingers any more nor change the past, but what I can do is my best to ensure that my kids understand right from wrong, learn to take responsibility for their actions and are respectful of those around them even when they may not necessarily agree with someone’s decision, opinion or action.
Then I received an email from yet 2 other family members talking about something they did and how they would have done the same thing for me. The funny thing about it was they didn’t do the same for me just 2 months earlier. When I called them out on it I was given every excuse they could come up with as to why they weren’t able to do what they said they would never do. Both rarely admit when they did something wrong and I know that their perception of reality is so far from mine that there is no use in trying to be rational.
After 37 years of trying to get all of them to see my side, I came to the realization that it was a waste of my time and energy. The best I can do now is live my life the best way I know how, learn from their mistakes as well as my own and do better by myself, my family and my kids. I choose early intervention every time over a life of frustration, fighting and tension. I believe that sweeping important issues under the rug never results in anything good. No matter how complex the issue, talking through it and working through it is a much better way to deal with whatever life throws at you.
Sometimes I think what if………….What if instead of having a fight and then forgetting it ever happened we all had sat down and talked about what we were feeling. What if I hadn’t grown up in a “my way or the highway” sort of family or had my “other family” to turn to when there were things going on at home I just wanted to run away from and finally what if I hadn’t snapped myself out of my own spiraling depression and got my act together. I spent 5 years falling deeper and deeper into a depression which I rarely talk about and the ironic thing about it is that maybe 1 or 2 people had any idea of what I was going through. Only those 1 or 2 people actually understood that I was feeling the way I was and acting the way I was b/c I felt like nothing I did or said was good enough and even worse, that nothing I said was taken seriously.
Almost 20 years after going through the worst time in my life, I am finally able to admit that I hit rock bottom and figured out a way to pull myself out of it. I guess you can say I found a way to turn lemons into lemonade. I was that card game, bluffing everyone out just to get through each day without having to let my guard down. However bittersweet it is, I don’t think I would be who and where I am today without my past happening the way it did and for that I guess I should be grateful I went through what I did growing up. I learned to take the good with the bad and turn it into something great.
Saturday, October 29, 2011
Predicting the unpredictable
Friday was a particularly interested day for us. It has been quite some time since our older son woke up over-stimulated. Our behaviorist thought it was because he had a friend coming over for a play date and was excited. Typically I would have agreed with that thought, but not on this day. Not on this day b/c he didn’t mention his little friend one time until I picked him up from school and reminded him that she was coming over to play.
This day was just one of those days you can’t plan for or predict. He came into my room around 5:30am asking to lay with me and for me to “squeeze him tight” which was my first indication that he needed to calm his little body and self regulate. He said, “Thank you mommy, squeeze me harder mommy.” For some reason he wasn’t able to do it on his own on this day. About an hour later he asked me to spin him around and “flop” him onto the bed. The spinning and flopping helps to trigger a calming mechanism in his little brain so after 10 spins and flops he felt a little better. Once we got to school and he saw all of his friends, teachers and everything in the classroom, the overstimulation kicked in once again. This continued off and on throughout the entire school day.
When I picked him up from Pre-K, as he was walking out to meet me, his teacher told me what they had been working on with him throughout the week. He has a habit of “fixating” on one friend or object for fear that this person or object won’t come back to him or won’t be available for him to play with when he is finished doing his “non preferred” task. We are really working really hard to teach him that this isn’t the case. Instead we are trying to get him to understand that the more he shares and plays with other kids the more fun he will have in the long run.
This may sound simple to most of you reading this blog yet for someone with self regulation, overstimulation, social-emotional delay, as well as speech and language integration delay it is quite a hard concept to grasp. If you saw my son for a moment, a few hours or sometimes even a few days you would think I was making up most of what I blog about weekly. Yet, if you spent days or weeks with us or even catch him on an off day, you would eventually have an “AhHa” moment and realize what I am saying is in fact true. Then and only then would you have a glimpse into his life and the life we lead every day.
The hardest part of dealing with all of this is that “the only thing predictable in our day to day life is that every moment of every day is actually unpredictable.” I use that saying a lot to explain what we deal with, especially to those that have never seen this side of him or those that have seen it, yet think he is just being a kid with an “off moment or afternoon”.
Don’t get me wrong - all in all, we are doing great. There are days that I think, “why me” but those “why me” moments quickly turn into “why him” moments. He doesn’t deserve to have to deal with working so hard to fit in, yet those are the cards that life has dealt him and so instead of feeling sorry for me and him, I chose to do the exact opposite. I chose to surround myself with the top teachers, professionals and best support system possible in order to teach him and our family ways to help him cope with these moments in order to allow him to live a “normal” life.
This day was just one of those days you can’t plan for or predict. He came into my room around 5:30am asking to lay with me and for me to “squeeze him tight” which was my first indication that he needed to calm his little body and self regulate. He said, “Thank you mommy, squeeze me harder mommy.” For some reason he wasn’t able to do it on his own on this day. About an hour later he asked me to spin him around and “flop” him onto the bed. The spinning and flopping helps to trigger a calming mechanism in his little brain so after 10 spins and flops he felt a little better. Once we got to school and he saw all of his friends, teachers and everything in the classroom, the overstimulation kicked in once again. This continued off and on throughout the entire school day.
When I picked him up from Pre-K, as he was walking out to meet me, his teacher told me what they had been working on with him throughout the week. He has a habit of “fixating” on one friend or object for fear that this person or object won’t come back to him or won’t be available for him to play with when he is finished doing his “non preferred” task. We are really working really hard to teach him that this isn’t the case. Instead we are trying to get him to understand that the more he shares and plays with other kids the more fun he will have in the long run.
This may sound simple to most of you reading this blog yet for someone with self regulation, overstimulation, social-emotional delay, as well as speech and language integration delay it is quite a hard concept to grasp. If you saw my son for a moment, a few hours or sometimes even a few days you would think I was making up most of what I blog about weekly. Yet, if you spent days or weeks with us or even catch him on an off day, you would eventually have an “AhHa” moment and realize what I am saying is in fact true. Then and only then would you have a glimpse into his life and the life we lead every day.
The hardest part of dealing with all of this is that “the only thing predictable in our day to day life is that every moment of every day is actually unpredictable.” I use that saying a lot to explain what we deal with, especially to those that have never seen this side of him or those that have seen it, yet think he is just being a kid with an “off moment or afternoon”.
Don’t get me wrong - all in all, we are doing great. There are days that I think, “why me” but those “why me” moments quickly turn into “why him” moments. He doesn’t deserve to have to deal with working so hard to fit in, yet those are the cards that life has dealt him and so instead of feeling sorry for me and him, I chose to do the exact opposite. I chose to surround myself with the top teachers, professionals and best support system possible in order to teach him and our family ways to help him cope with these moments in order to allow him to live a “normal” life.
Becoming vulnerable
I continue to be reminded of what a small world we live in. Thursday I was on a call with a mom of one of my sons classmates and found out that she is a close friend of some of the people I owe a lot of my son’s early intervention success to over the last 2 years. I once again felt a sense of happiness and pride in knowing that I have surrounded myself with an amazing “village of people” to assist me with our road less traveled. As of our conversation went on I realized that she too had come across struggles as she fought to get services for her son. Having to fight for the help that we are actually supposed to be offered from the state and the district seems to be a common theme for so many that I have come in contact with over the last year. It saddens me that there is so much red tape surrounding the success of our children, the very people that we are trying to groom to accomplish bigger and better goals than were set for us.
I went to a Department of Pupil Services – Special Education meeting. During the meeting the group outlined the special education programs, goals for the 2011-2012 year, the entire process from pre-k though HS graduation, costs involved in funding these programs as well as all of the training they put into educating not only the General Education Teachers but the special education teachers and instructional aides. I feel very lucky to be a part of this district. Walking out of this meeting I was 100% convinced that my child is being given the best program possible to fit his needs and help him accomplish and even potentially surpass his IEP goals. I am now confident that it is not just the educators and professionals that touch his life on a daily basis, but also those leading the fight that have his best interest at heart as well. I had the opportunity to meet the Director of Pupil Services. I was pleasantly surprised to find out that she not only knew who my child was, she knew when he started with the school districts pre-school program and things that he is working on in class and with his IEP.
Unless we open ourselves up to the possibilities and opportunities around us, let ourselves be vulnerable enough to ask for help, and begin to see the truth as others see it around us, we have no chance of total peace and tranquility in our lives.
I went to a Department of Pupil Services – Special Education meeting. During the meeting the group outlined the special education programs, goals for the 2011-2012 year, the entire process from pre-k though HS graduation, costs involved in funding these programs as well as all of the training they put into educating not only the General Education Teachers but the special education teachers and instructional aides. I feel very lucky to be a part of this district. Walking out of this meeting I was 100% convinced that my child is being given the best program possible to fit his needs and help him accomplish and even potentially surpass his IEP goals. I am now confident that it is not just the educators and professionals that touch his life on a daily basis, but also those leading the fight that have his best interest at heart as well. I had the opportunity to meet the Director of Pupil Services. I was pleasantly surprised to find out that she not only knew who my child was, she knew when he started with the school districts pre-school program and things that he is working on in class and with his IEP.
Unless we open ourselves up to the possibilities and opportunities around us, let ourselves be vulnerable enough to ask for help, and begin to see the truth as others see it around us, we have no chance of total peace and tranquility in our lives.
Thursday, October 27, 2011
Brick by Brick and Stone by Stone
Regardless of whether or not we want time to stand still, it doesn’t. Time controls us, we don’t control it. Life controls us, we don’t control it. Actions control us, we don’t control actions. The weather controls us, we don’t control the weather. Our mood controls us, we don’t control our mood.
Is the glass half full or half empty? Does the rainbow appear after the rain, or does the rain have nothing to do with a rainbow after all? Where there is a will, is there really a way. Is it really mind over matter? Do we really control our own destiny or are we born pre-destined to do certain things? Does the human mind really have the ability to alter the outcome of one’s life?
I know this seems to be a blog of random thoughts and those of you reading may have no idea where I am going with this one. Let me explain. All of the random thoughts above are one’s that often go through my mind. I find myself quite often wondering if we really have control over our lives, who we encounter during our time on earth, how we deal with situations thrown our way and if what we do on earth has any bearing on the things that happen to us during our life time.
After everything I have been through in my life, both good and bad, I have come to the conclusion that there is one word that answers all of the things I randomly wrote about above. The answer is YES. One way or another, in some situation the answer to all of the above is yes. I will never understand why so many obstacles have been thrown my way. To this very question - the answer I get from many is, “because you can handle it”
Although this may be true - I think even those who have the strongest will to help others and the ability to find a way to deal with whatever life throws at them, every person deserves a break at some point. Everyone deserves time to just be able to sit back, smell the roses and enjoy their life. I know I say that I deserve this too – that I want to have that peace and tranquility - but then I think again and say to myself,” now what would someone like me (A type personality, always needing to help solve problems) do with peace and tranquility.” The answer is I don’t know. Even when I am on “vacation” my mind is all over the place thinking of what I need to do next, how I can help my oldest son have a great life and what am I going to need to do in order to help my younger son have a great life as well.
Last week I sat and talked to a behavior interventionist about where we were with my oldest son at age 2 and where we are now at age 4.75. She sat there smiling and shaking her head as I lit up discussing all of the obstacles he has overcome and how, in just the last 2 months, he has really begun to “grown into himself”. I shared how great he is as a big brother, sharing, comforting and just playing with his little brother. Talking about how he finds such a sense of pride in being a big brother and how it has brought so much confidence out in him.
We talked about the areas he still needs some help “training his brain” and what he will be able to accomplish once this takes place. My little 4.75 year old has to deal with more on a daily basis than I ever wish on anyone. Every day he has to think harder, try harder and do more just to be a “typical” child. Every time I speak with a professional about how he used to act and who he has become, a sense of pride takes over for a brief moment and then quickly fades away. Although it fades into a memory, it brings me more strength and helps me stay focused on knowing that it is one day at a time and reminds me that I should take the time to celebrate the small accomplishments.
It takes a village to build a strong foundation that can carry one through their lifetime. If you start out with cracks in that foundation, sometimes you can patch up the walls but other times no matter how hard you try to patch the cracks, the holes open back up and the building collapses. Yet if you take the time to tear down the cracked foundation and rebuild it one brick or one stone at a time, what you may find is a strong, sturdy building that can last a lifetime. I think of what we have done for our son and what we continue to do as laying a solid foundation that will outlast any obstacle thrown our way. Life often throws you a curveball and it is what you decide to do with that curveball that makes the difference. Every day you have a choice to live your life one way or another. You can choose to ask for help or stay quiet. You can choose to blame others or look in the mirror and take ownership. You can choose to sulk, thinking of the cards you were dealt or do something to make your life and the lives around you better. I make the choice every day to do just that – I know that if I don’t choose to wake up, put a smile on my face and make the best of each day that not only am I letting myself down but I am also letting my kids and husband down. Putting myself first is not something that comes easy to me, yet I know that doing everything I can to be the best me will always be enough to help my kids be the best they can be.
I know this seems to be a blog of random thoughts and those of you reading may have no idea where I am going with this one. Let me explain. All of the random thoughts above are one’s that often go through my mind. I find myself quite often wondering if we really have control over our lives, who we encounter during our time on earth, how we deal with situations thrown our way and if what we do on earth has any bearing on the things that happen to us during our life time.
After everything I have been through in my life, both good and bad, I have come to the conclusion that there is one word that answers all of the things I randomly wrote about above. The answer is YES. One way or another, in some situation the answer to all of the above is yes. I will never understand why so many obstacles have been thrown my way. To this very question - the answer I get from many is, “because you can handle it”
Although this may be true - I think even those who have the strongest will to help others and the ability to find a way to deal with whatever life throws at them, every person deserves a break at some point. Everyone deserves time to just be able to sit back, smell the roses and enjoy their life. I know I say that I deserve this too – that I want to have that peace and tranquility - but then I think again and say to myself,” now what would someone like me (A type personality, always needing to help solve problems) do with peace and tranquility.” The answer is I don’t know. Even when I am on “vacation” my mind is all over the place thinking of what I need to do next, how I can help my oldest son have a great life and what am I going to need to do in order to help my younger son have a great life as well.
Last week I sat and talked to a behavior interventionist about where we were with my oldest son at age 2 and where we are now at age 4.75. She sat there smiling and shaking her head as I lit up discussing all of the obstacles he has overcome and how, in just the last 2 months, he has really begun to “grown into himself”. I shared how great he is as a big brother, sharing, comforting and just playing with his little brother. Talking about how he finds such a sense of pride in being a big brother and how it has brought so much confidence out in him.
We talked about the areas he still needs some help “training his brain” and what he will be able to accomplish once this takes place. My little 4.75 year old has to deal with more on a daily basis than I ever wish on anyone. Every day he has to think harder, try harder and do more just to be a “typical” child. Every time I speak with a professional about how he used to act and who he has become, a sense of pride takes over for a brief moment and then quickly fades away. Although it fades into a memory, it brings me more strength and helps me stay focused on knowing that it is one day at a time and reminds me that I should take the time to celebrate the small accomplishments.
It takes a village to build a strong foundation that can carry one through their lifetime. If you start out with cracks in that foundation, sometimes you can patch up the walls but other times no matter how hard you try to patch the cracks, the holes open back up and the building collapses. Yet if you take the time to tear down the cracked foundation and rebuild it one brick or one stone at a time, what you may find is a strong, sturdy building that can last a lifetime. I think of what we have done for our son and what we continue to do as laying a solid foundation that will outlast any obstacle thrown our way. Life often throws you a curveball and it is what you decide to do with that curveball that makes the difference. Every day you have a choice to live your life one way or another. You can choose to ask for help or stay quiet. You can choose to blame others or look in the mirror and take ownership. You can choose to sulk, thinking of the cards you were dealt or do something to make your life and the lives around you better. I make the choice every day to do just that – I know that if I don’t choose to wake up, put a smile on my face and make the best of each day that not only am I letting myself down but I am also letting my kids and husband down. Putting myself first is not something that comes easy to me, yet I know that doing everything I can to be the best me will always be enough to help my kids be the best they can be.
Monday, October 10, 2011
Early Intervention of another kind
In the last few weeks, the USA Gymnastics community has gone through a lot of turmoil. I would blog about the details although most of you following this post would not know anyone I post about so I will keep this quite general. I will say that several people I have known since I was quite young came forward about being sexually abused by the coaches that they trusted, looked up to and respected. Many people have been able to close a terrible chapter in their lives by exposing this and it has led to several coaches being fired and numerous investigations about the facts of these cases. I chose to write about this topic because although not directly related to my son, indirectly it is because I also respected some of these coaches and am still friends with some of the victims.
In this case, early intervention may have come in the form of one of these gymnasts parent's having been able to notice "something off", having the courage to ask their child about it and in turn giving that child the courage to say something many years ago. In any case, early intervention don't come soon enough and because of this it takes many, many years, if not forever to fix what took place.
I think about all of my years as a gymnast, the many ups and downs, the numerous conversations I tried to have with my parents about things I didn't like, wanted to change, was unhappy about etc. For some reason, maybe because they weren't living it, didn't see it my way and thought what I was doing was exactly what I wanted to be doing. They chose to ignore my unhappiness at times. I guess as I look back on it they may have thought I was just having a bad day and didn't mean what I was saying or feeling. The sad thing is that when I had those issues, if someone would have actually believed me, I know that things would have been a little easier for me during my childhood years. The years that help to mold you into the adult one becomes later in life. In a nutshell, the lack of early intervention that went on in my life growing up has led me to be the advocate I am for my son and the the person I am today.
The more that unfolds about the scandals that have taken place within the gymnastics community the more I realize we each had to deal with our own things from those years. I also realize that each of us walked away with very different memories, both good and bad. Some of us ended up walking away stronger and more corageous, find a way to intertwine it into our lives to be able to stand up for ourselves and fight for right and wrong and others were so beaten down by it that it has taken many, many years to get to a point where they can once again "love themselves" and trust others.
For me, all of the injuries, ups and downs and the never having a chance to compete for a chance at a spot on the 88 team took me about 6 years to get over. During that time I felt quite lost, knew what I didn't want to do with my life but had no idea what I wanted to do which put me in a state of limbo. Once again I found myself "against my parents" for the simple fact that they couldn't understand I was unable to put into words what I was feeling. During that time I had no words to describe it other than I felt "lost and without purpose" I knew that they wouldn't understand and the more I tried to talk to them the worse I felt about it all.
After completing college, taking on my first real job in a brand new state and finding myself in yet another "non healthy" relationship, I realized that I could either choose to make my life better or continue on this downward spiral. I decided to take the road less traveled. The one that helped me figure out a way to become a better, stronger, more determined person. A person that knows success comes with failure and learns from each obstacle along the way.
After all these years, I know that so many of those in my "gymnastics family" have helped me figure out what it is that I want out of life. They also taught me how to push through the pain, heartache and bad times. I now know that if you, keep your head up, take what is said to you with a grain of salt and stay focused on your goals - life will go on no matter the outcome.
In this case, early intervention may have come in the form of one of these gymnasts parent's having been able to notice "something off", having the courage to ask their child about it and in turn giving that child the courage to say something many years ago. In any case, early intervention don't come soon enough and because of this it takes many, many years, if not forever to fix what took place.
I think about all of my years as a gymnast, the many ups and downs, the numerous conversations I tried to have with my parents about things I didn't like, wanted to change, was unhappy about etc. For some reason, maybe because they weren't living it, didn't see it my way and thought what I was doing was exactly what I wanted to be doing. They chose to ignore my unhappiness at times. I guess as I look back on it they may have thought I was just having a bad day and didn't mean what I was saying or feeling. The sad thing is that when I had those issues, if someone would have actually believed me, I know that things would have been a little easier for me during my childhood years. The years that help to mold you into the adult one becomes later in life. In a nutshell, the lack of early intervention that went on in my life growing up has led me to be the advocate I am for my son and the the person I am today.
The more that unfolds about the scandals that have taken place within the gymnastics community the more I realize we each had to deal with our own things from those years. I also realize that each of us walked away with very different memories, both good and bad. Some of us ended up walking away stronger and more corageous, find a way to intertwine it into our lives to be able to stand up for ourselves and fight for right and wrong and others were so beaten down by it that it has taken many, many years to get to a point where they can once again "love themselves" and trust others.
For me, all of the injuries, ups and downs and the never having a chance to compete for a chance at a spot on the 88 team took me about 6 years to get over. During that time I felt quite lost, knew what I didn't want to do with my life but had no idea what I wanted to do which put me in a state of limbo. Once again I found myself "against my parents" for the simple fact that they couldn't understand I was unable to put into words what I was feeling. During that time I had no words to describe it other than I felt "lost and without purpose" I knew that they wouldn't understand and the more I tried to talk to them the worse I felt about it all.
After completing college, taking on my first real job in a brand new state and finding myself in yet another "non healthy" relationship, I realized that I could either choose to make my life better or continue on this downward spiral. I decided to take the road less traveled. The one that helped me figure out a way to become a better, stronger, more determined person. A person that knows success comes with failure and learns from each obstacle along the way.
After all these years, I know that so many of those in my "gymnastics family" have helped me figure out what it is that I want out of life. They also taught me how to push through the pain, heartache and bad times. I now know that if you, keep your head up, take what is said to you with a grain of salt and stay focused on your goals - life will go on no matter the outcome.
Tuesday, October 4, 2011
The good the bad and the ugly
After I posted all of the milestones and breakthroughs we had with our son over the last few months, we went through this past week of "the good the bad and the ugly". I know that he is just a little boy and boys will be boys. Some of what occurred this past week is just par for the course with a young child. Other things were more about him taking 3 steps forward and then 2 steps backward. His little brain is growing and changing so rapidly now and you just never know what you are going to get from hour to hour or day to day. I always have to keep in mind that it is one day at a time, one foot in front of the other and things will just keep getting better.
I know that with all of the bad and ugly comes so much good that it definitely outweighs the bad and ugly moments. 6 months ago I would have said the exact opposite b/c there were definitely more bad and ugly moments/days than good days back then. It almost seems surreal how much growth and progress we have made in such a short amount of time.
I thought it was a short amount of time until I made that comment to someone we have been working with for 2.5 years now. She said to me, "it didn't happen overnight, it happened b/c of all of the early intervention I have sought out for my son and the wonderful team that came together to help me, help him." I think of each and every one of them daily and am so thankful that they found a way into our lives. I know I went out and "found them" but to me finding them happened for a reason.
I received a few emails this week from some of my son's specialists stating how impressed they are with how well he is adapting to change, transitions, and even working through his small "meltdowns". I am so proud of my little guy and all that he has achieved. Through the good, the bad and the ugly the sun has begun to shine and all of the clouds that seemed to cover so many of our days are now behind us. Each day I see less clouds and more sunshine and that makes me one happy mom!
I know that with all of the bad and ugly comes so much good that it definitely outweighs the bad and ugly moments. 6 months ago I would have said the exact opposite b/c there were definitely more bad and ugly moments/days than good days back then. It almost seems surreal how much growth and progress we have made in such a short amount of time.
I thought it was a short amount of time until I made that comment to someone we have been working with for 2.5 years now. She said to me, "it didn't happen overnight, it happened b/c of all of the early intervention I have sought out for my son and the wonderful team that came together to help me, help him." I think of each and every one of them daily and am so thankful that they found a way into our lives. I know I went out and "found them" but to me finding them happened for a reason.
I received a few emails this week from some of my son's specialists stating how impressed they are with how well he is adapting to change, transitions, and even working through his small "meltdowns". I am so proud of my little guy and all that he has achieved. Through the good, the bad and the ugly the sun has begun to shine and all of the clouds that seemed to cover so many of our days are now behind us. Each day I see less clouds and more sunshine and that makes me one happy mom!
Sunday, September 25, 2011
Milestones and breakthroughs worth celebrating
Over the last few weeks, we had several more breakthroughs and milestones with our son. You may read this blog and think, “What is she so excited about” these things happen to every child and it is just my kid maturing. In reality what I am witnessing is 2.5 years of intense early intervention therapy proving to be worth every penny and all of the blood, sweat and tears my little boy and our family had to endure over this time period.
My 4 year old and I were sitting on his bed last week when tears welled up in his eyes and he said to me, mommy I don’t feel so well. I asked if it was his stomach or his head and he said no mom, my feelings are hurt and I am really sad b/c I miss daddy and want him to come back home. His daddy was on a work trip and he really missed him. The amazing part about all of this is even a month ago, he was physically unable to just let himself cry and use his words to share what he was feeling inside. Instead, over the last 2 years those feelings were shown in the way of meltdowns that lasted hours, tantrums that had him kicking, screaming, throwing and trying to even hit or bite. This time, he handled himself with maturity, love, compassion and amazing words that allowed me to figure out what was going on, comfort him and even calm him down enough to get to sleep for the evening. No true chaos, no anxiety and no screaming on either one of our parts. It was truly an amazing moment.
Another milestone moment happened last week when my son fell down and scraped his knee pretty hard on the sidewalk. Instead of throwing a complete temper tantrum full of kicks, scratches, screams and punches he cried real tears and shared that it stung, burned and wanted to make it stop. He asked me to pour water on it and even wanted to try and clean it off himself. He decided that he still wanted to go to his scheduled appointment and not just go home. Just another example of how he has learned to cope with the unexpected, pull himself together and keep going, instead of letting it ruin his entire day.
A few days ago I came across a babycenter.com article that was titled Excuse me, mommy and it talked about how kids at 4 just talk and talk and talk and are so curious. They said that talking and talking, when they feel like it and not just when they should be talking, isn’t b/c they are being disobedient, but instead a normal lack of self-control. For the first time in a very long time I realized that my 4yr old was right in line with this “typical” behavior. He is now that curious child, always asking questions and trying to figure things out. His little brain is taking things in and processing them at a speed I never thought possible. Things that would take him hours, days or that were even impossible for him to process are now possible for him. In a way he has achieved the impossible and to me that is just incredible.
Yesterday I saw my 4 yr old play on a swing for over an hour with a friend from school. He wanted to go higher and higher and when I wouldn’t push him “really high” he asked daddy to push him instead. I was afraid he was going to fall off of the swing. In the last 2 years I have only seen him get on a swing 2 other times. One time he fell off and the other time he seemed happy. This time he was talking and laughing and screaming in delight with a friend right next to him doing the same thing.
My first thought was that the new preschool-teachers were amazing, my husband thought he was just seeing how other friends can do it and just decided that he could and the truth lies somewhere in between. It is true that his new teachers are amazing, loving, caring and work with each child to develop their academic and social emotional skills at their own place. It is also true that our son has matured a lot over the last 6 months and is learning that if his friends can do it, he can too. Finally, the behavioral aide we had working with him 3 hours a day 3 days a week for over 8 months was able to identify his “triggers” give him ways to cope and deal with those triggers which in turn has helped him change his behaviors.
All of this has helped him become the little boy he is today. It has truly changed our lives. For a long time we didn’t want to have play dates, go to parties or even to the park for fear what may set him off and cause an alarming meltdown, evil looks from other parents or just sadness in our hearts for what he was going through.
Today we had a play date with triplets. Our son is friends with all of them from school. While the play date was sometimes overwhelming for him, I felt that he handled himself well. They were here for 2 hours and during that time he had a few moments of overstimulation and episodes of not understanding why his friends didn’t want to do what he wanted to do when he wanted to do it. Although he had some of these moments and episodes, he was able to keep it together enough to calm himself down and/or move himself through the situation well enough to avoid an all out meltdown. In a nutshell the play-date was a big success.
On the days that I wonder if what I have been doing for my son is really going to pay off, days like these come along and make me know that everything I fought for and all of the early intervention he is currently getting, is paying off 100%. It also makes me sad as I think of many friends and strangers yet to come into my life that can’t accept that there is really something going on with their child, won’t look in the mirror to see that part of the problem may actually be them, or the fact that they chose to only go so far when just one more call or one more meeting may have given their child every chance to have the best social emotional life possible.
I know we still have a lot of work to do. I also know that all of the early intervention we paid for out of pocket over the last 2 years is finally proving to be worth every penny. These milestones may seem small and petty to some, but those that truly know what I have been through and where we are heading would agree that they are HUGE milestones worth celebrating.
I continue to share my story in hopes that it will help other people take that extra step for their child. Knowing that there is a light at the end of the tunnel may allow someone to keep going until they get a yes. I know first-hand that it only takes one person in the right position to back you up in order to move things forward. I also know that the long and winding road really does have some sunny easy cruise control lanes as well. Regardless of how long it takes between the milestones discussed above, I am a true believer in intense early intervention, as well as the power of positive thinking and the desire to never ever give up.
Saturday, September 17, 2011
School Readiness
A parent's decision to move their child to kindergarten or have them wait an extra year is a very hard decision. It is probably one of the most important decisions we as parents will ever make when it comes to our child's future and well being. It is a very hard decision. One that has no right or wrong answer, only a gut feeling. You may be asking yourself, so what does it mean to be ready for school? I came across the following quoted information on the Education.com website.
Education.com's website says that School readiness means "having the ability to learn and cope with the school environment without undue stress.
•A child's intelligence plays only a minor role in his or her ability to cope with the school day."
At a meeting a few days ago the director of my son's preschool talked about what she felt Kindergarten readiness meant. I strongly agreed with her assessment and so I thought it would be beneficial to share some of what she talked about that evening.
* Feel secure in a new environment
* Self regulation and emotional regulation skills
* The ability to communicate with peers and adults
* Developed fine motor skills and coordination
* Problem solving skills
* Critical thinking skills
* Interactive play
* Self confidence
* The ability to socially interact in an appropriate manner
I truly believe that no matter how academically ready a child is for school, without the social emotional aspect, we are setting them up for failure. Unfortunately that is the case for a lot of us, epecially since our kids are being taught in Kindergarten what we were taught in first and second grade. It is sad how quickly our children are expected to grow up. I have friends who have Kindergarten kids expected to complete 1-2 hours of homework a night. A kindergartener should never have to sit at a table and do homework for 2 hours after being at school all day. It makes no sense to me. I don't think it takes a professional to know that they don't have the attenion span to do so and that 5 and 6 year olds should be out riding their bikes and climbing trees after school. Exploring and being kids.
Since this blog post was intended to share school readiness information, I will end it now. Please feel free to post questions about this or anything else I blog about on my site. I welcome the conversation and hope that this blog will help at least one person figure out what the right next step is for their child.
Education.com's website says that School readiness means "having the ability to learn and cope with the school environment without undue stress.
•A child's intelligence plays only a minor role in his or her ability to cope with the school day."
At a meeting a few days ago the director of my son's preschool talked about what she felt Kindergarten readiness meant. I strongly agreed with her assessment and so I thought it would be beneficial to share some of what she talked about that evening.
* Feel secure in a new environment
* Self regulation and emotional regulation skills
* The ability to communicate with peers and adults
* Developed fine motor skills and coordination
* Problem solving skills
* Critical thinking skills
* Interactive play
* Self confidence
* The ability to socially interact in an appropriate manner
I truly believe that no matter how academically ready a child is for school, without the social emotional aspect, we are setting them up for failure. Unfortunately that is the case for a lot of us, epecially since our kids are being taught in Kindergarten what we were taught in first and second grade. It is sad how quickly our children are expected to grow up. I have friends who have Kindergarten kids expected to complete 1-2 hours of homework a night. A kindergartener should never have to sit at a table and do homework for 2 hours after being at school all day. It makes no sense to me. I don't think it takes a professional to know that they don't have the attenion span to do so and that 5 and 6 year olds should be out riding their bikes and climbing trees after school. Exploring and being kids.
Since this blog post was intended to share school readiness information, I will end it now. Please feel free to post questions about this or anything else I blog about on my site. I welcome the conversation and hope that this blog will help at least one person figure out what the right next step is for their child.
Friday, September 16, 2011
Courage
Over the last 2.5 years I can’t even count the number of times my heart dropped to my feet while my stomach filled with knots b/c I had to ask my son to stop what he was doing and change his focus. What would that request bring? It could have ended with a scream, a tantrum, a good cry, cooperation or an ok mom – no one ever really knew how he would react. This week there have been more enlightening moments than I can remember having in a 6 month period of time. I am so proud of my little boy and how he has learned to handle all that he has endured over the last few years. The coping and self regulation skills that he has learned, the pride I hear in his voice and see on his face when he knows he did something well and the creative ways he has learned to play with his friends, his brother and even on his own, all give me such a sense of peace and pride.
He has begun to understand abstract ideas, express his feelings in terms that make sense, play in such a creative way, offering to help, moving from task to task, learning how to cope when things don’t work out the way he expects them to and following directions without a fight or meltdown.
Some may read this and think it sounds like he is just growing up as he should and wonder why I am excited that all of the above is happening. What they don’t get is that from year 2 to 4.5 he was about a year behind the majority of his peers with all of the above. I thought the progress that he has made over the last 2.5 years was good yet each time I speak with a professional about it I am told that the progress he has made is not good, it’s fantastic. We still have a long way to go before he is on par with a typical “mainstream” peer BUT he is well on his way to having all of the necessary skills to communicate, interact, cope and self regulate in any situation and for that I am forever grateful.
Through my son I have learned how to be more resilient, more flexible, more determined and more understanding than I ever thought possible. In 4 short years he has taught me more about myself, courage, strength, struggles and successes than anyone else I have ever encountered. He has the kindest heart of anyone I know and strives to be the best he can be every day. He battles within himself to do the right thing and each day finds a new way to cope and deal with these struggles. He is an amazing human being and I am so proud to be his mom.
I continue to write this blog as an outlet for me, and to give others hope that great things can be ahead for their child and family as well. The time and energy I have devoted to research, calls, fighting for services, cutting through red tape, listening to “professional opinions” and for my son in general, has all come full circle for me. My crying eyes and sad heart have been replaced with excited, hope and a huge smile. I now know that the future is bright and that nothing can or will stand in the way of me or my family’s well being again.
Tuesday, September 13, 2011
It may just be as easy at ABC
Over the last several weeks I have heard a lot about the ABC's of behavior. In a nutshell it seems as though no behavior will change without knowing the cause of the behavior nor changing the consequence of what happens when the behavior occurs. I know this sounds quite simple but in fact the more I learn about it the more I realize that it is quite a complex process. There is a saying that goes something like, "it takes 1 day to make a bad habit but 100 days to break one" I have come to realize that habits are just behaviors that we do over and over again. Either no one addressed the bad habits, offered us other ways to react to certain situations or we just chose or choose to continue with the habits we have created in our own minds.
However you look at it something always causes us to begin a habit. It is up to us and our support groups to figure out the following - what caused the behavior in the first place, why did it become a habit/ongoing behavior and what can we do to change it. For those of us that are completely open to new ideas and change it may sound quite simple when in fact even a person who is open to change will still fall back into old habits given the chance to do so.
Now you look at a child who may not necessarily know any differently and you come to a few conclusions as to how their behavior may have become a habit. The environment, their role models or even their peers. If someone see's someone getting something they want by doing it the wrong way, why do it the right way and risk not getting the reward.
Wikipedia states, "One of the most simple yet effective methods of functional behavioral assessment is called the "ABC" approach, where observations are made on Antecedents, Behaviors, and Consequences. In other words, "What comes directly before the behavior?", "What does the behavior look like?", and "What comes directly after the behavior?" Once enough observations are made, the data are analyzed and patterns are identified. If there are consistent antecedents and/or consequences, an intervention should target those to increase or decrease the target behavior. This method forms the core of positive behavior support for schoolchildren in both regular and special education."
As with anything else worth doing, it takes time to change a behavior. The choice to change is your decision. I have decided to further educate myself on this process and use it to not only better my children's lives but mine as well.
What choice will you make?
However you look at it something always causes us to begin a habit. It is up to us and our support groups to figure out the following - what caused the behavior in the first place, why did it become a habit/ongoing behavior and what can we do to change it. For those of us that are completely open to new ideas and change it may sound quite simple when in fact even a person who is open to change will still fall back into old habits given the chance to do so.
Now you look at a child who may not necessarily know any differently and you come to a few conclusions as to how their behavior may have become a habit. The environment, their role models or even their peers. If someone see's someone getting something they want by doing it the wrong way, why do it the right way and risk not getting the reward.
Wikipedia states, "One of the most simple yet effective methods of functional behavioral assessment is called the "ABC" approach, where observations are made on Antecedents, Behaviors, and Consequences. In other words, "What comes directly before the behavior?", "What does the behavior look like?", and "What comes directly after the behavior?" Once enough observations are made, the data are analyzed and patterns are identified. If there are consistent antecedents and/or consequences, an intervention should target those to increase or decrease the target behavior. This method forms the core of positive behavior support for schoolchildren in both regular and special education."
As with anything else worth doing, it takes time to change a behavior. The choice to change is your decision. I have decided to further educate myself on this process and use it to not only better my children's lives but mine as well.
What choice will you make?
Monday, September 12, 2011
It takes a village
We are one week into my son's new Pre-K program and I couldn't be happier with the teachers and special educators that are providing services to him and other children at the school. Every morning I walk onto campus and we are greated by smiling teachers, directors and other educators, relaxed and excited to see my little boy show up for school. They are ready to take on whatever challenge may arise that day. Working along side of him to offer the best solutions and redirection in order to teach life skills. I believe now more than ever that it really does take a village to be successful in providing your child with the best.
I am very lucky to have a village behind me, offering guidance, support and assistance along the way. It is quite comforting to know that he is thriving and growing every day. This last year has been full of ups and downs, yet so much good has come out of it. He is learning and growing in ways that I would have never thought possible even 6 short months ago. It is almost as though he is not even the same little boy that he was back in December when we began more intense early intervention services for him.
If not for the team behind me, I am not sure where we would be today. If not for the team along side of me now, I think I would be quite depressed and at a loss for what to do next. I am not sad, nor depressed nor feeling alone any longer. Instead, I am in a great place, feeling extremely optimistic about the future and the wonderful life ahead for our family and our kids.
I write today's blog for those that feel as though they are stuck at a cross-roads. Unsure of whether or not to start or continue early intervention services for their child. If you have any doubts about there being a chance for your child to be successful and thrive in a mainstream environment read through my blog posts. The old saying, "when there's a will there's a way" definitely applies to my train of thought - Tt is up to me to give my kids every possible opportunity to be as happy and successful as they choose to be -no matter how much time, energy and effort it takes on my part. In the long run it will be worth every moment.
I am very lucky to have a village behind me, offering guidance, support and assistance along the way. It is quite comforting to know that he is thriving and growing every day. This last year has been full of ups and downs, yet so much good has come out of it. He is learning and growing in ways that I would have never thought possible even 6 short months ago. It is almost as though he is not even the same little boy that he was back in December when we began more intense early intervention services for him.
If not for the team behind me, I am not sure where we would be today. If not for the team along side of me now, I think I would be quite depressed and at a loss for what to do next. I am not sad, nor depressed nor feeling alone any longer. Instead, I am in a great place, feeling extremely optimistic about the future and the wonderful life ahead for our family and our kids.
I write today's blog for those that feel as though they are stuck at a cross-roads. Unsure of whether or not to start or continue early intervention services for their child. If you have any doubts about there being a chance for your child to be successful and thrive in a mainstream environment read through my blog posts. The old saying, "when there's a will there's a way" definitely applies to my train of thought - Tt is up to me to give my kids every possible opportunity to be as happy and successful as they choose to be -no matter how much time, energy and effort it takes on my part. In the long run it will be worth every moment.
Tuesday, August 30, 2011
Our Journey
It has been quite a while since I have posted anything on my blog. Life has been quite busy for me. My family and I recently got back from vacation and I am feeling really positive about all of the early intervention we have paid for out of pocket over the last 2 years. Our son tried so many new things while we were on vacation, went with the flow a lot and was able to just transition from activity to activity on numerous occasions. You may be reading this and thinking, "what's the big deal" and I am here to say that it is a huge deal.
12 months ago my husband and I would never have thought of taking our kids on vacation with us and even 4 months ago when we booked our first real family vacation my anxiety level was through the roof. I was so pleasantly surprised by his actions and reactions. We were both filled with so much overwhelming joy as to how much he has grown in the last year. His ability to deal with change and trying new things is like night and day.
He starts Pre-K next week. Although he will be going to a new school with new friends and teachers I am confident that it will be an amazingly positive and successful year for him. He will be surrounded by professionals trained to help him when he falls, teach him ways to cope with his inability to see how change and flexibility is a good thing, help him understand how speech and language integrate with one another and just allow him a safe place to continue to grow and understand himself.
My son is proof positive that Early Intervention Services do work and carry a small price tag compared to what would happen if we had not started getting him the help at such a young age. It is important to say that going out and finding any professional isn't necessarily going to help your child progress. It is more about doing your homework, researching who and what is the right early intervention for your child, partnering with the right team and following through on what you know is the best thing for your child.
If you are reading this blog, thank you. Either you are a friend following my journey or someone that may be trying to decide whether early intervention is right for your child. There is only one way to find out - get him/her assessed and see where it takes you. I am here to say it is worth the journey!
12 months ago my husband and I would never have thought of taking our kids on vacation with us and even 4 months ago when we booked our first real family vacation my anxiety level was through the roof. I was so pleasantly surprised by his actions and reactions. We were both filled with so much overwhelming joy as to how much he has grown in the last year. His ability to deal with change and trying new things is like night and day.
He starts Pre-K next week. Although he will be going to a new school with new friends and teachers I am confident that it will be an amazingly positive and successful year for him. He will be surrounded by professionals trained to help him when he falls, teach him ways to cope with his inability to see how change and flexibility is a good thing, help him understand how speech and language integrate with one another and just allow him a safe place to continue to grow and understand himself.
My son is proof positive that Early Intervention Services do work and carry a small price tag compared to what would happen if we had not started getting him the help at such a young age. It is important to say that going out and finding any professional isn't necessarily going to help your child progress. It is more about doing your homework, researching who and what is the right early intervention for your child, partnering with the right team and following through on what you know is the best thing for your child.
If you are reading this blog, thank you. Either you are a friend following my journey or someone that may be trying to decide whether early intervention is right for your child. There is only one way to find out - get him/her assessed and see where it takes you. I am here to say it is worth the journey!
Wednesday, June 29, 2011
All in the way you word it
My mother called to "check in" last night and amazingly I had the most civilized conversation with her and my father about Speech Therapy my son has just begun for assistance in Pragmatic language. The typical push back, non-believer mentality and lack of appreciation for early intervention services was overtaken by an appreciation for what I was doing for my child. They were both a bit confused b/c of how clear and extensive his speech and language skills are but once I explained what Pragmatic language really meant they were quite interested in finding out more. I was shocked by their openess to really listen and try to understand what led me to get him these services for our son. Once my dad listened and explained it to my mom they were both impressed with what had been discovered and the fact that my son was being offered free Speech Therapy through the school district.
I think this just goes to show that it is "all in the way you word it." Had I said, by the way my son now has an IEP through the school district for XYZ issues I am certain the discussion would have gone down an entirely different path. After many many years of trial and error I think I have finally figured out how I need to speak with parents in order to get them to see outside of their little box.
I bring up this conversation b/c if you are following this blog, you either know of my family or you have most likely come across at least one person that has reacted to your early intervention choices with the "non-believer" attitude. I hope this shows that no matter how much you don't think someone can open their hearts, ears and eyes to see what is going on, there is hope. I am not sure that I will ever share with them all of what I have done thus far to help my son but last night was definitely a step in the right direction. I think baby steps are the best way to go.
I think this just goes to show that it is "all in the way you word it." Had I said, by the way my son now has an IEP through the school district for XYZ issues I am certain the discussion would have gone down an entirely different path. After many many years of trial and error I think I have finally figured out how I need to speak with parents in order to get them to see outside of their little box.
I bring up this conversation b/c if you are following this blog, you either know of my family or you have most likely come across at least one person that has reacted to your early intervention choices with the "non-believer" attitude. I hope this shows that no matter how much you don't think someone can open their hearts, ears and eyes to see what is going on, there is hope. I am not sure that I will ever share with them all of what I have done thus far to help my son but last night was definitely a step in the right direction. I think baby steps are the best way to go.
Wednesday, June 15, 2011
Understanding SPD and ASD
Over the last 2 years I have often wondered how many people out there are going through a similar situation as we are in our family. Not knowing what is causing reactions that our child has to certain situations, wondering why the oddest thing can cause a negative reaction and why other days we could go through an entire day with nothing but happiness and compliance. A question I often asked myself was.....Is this just a typical child of this age or is something more going on? Knowing that I had grown up with a sibling who had some of these tendencies I eventually came to the conclusion that they were not the norm and knew I had to do something about it.
After 2.5 years of early intervention, a lot of guidance and support from experts, pushing away those that were or still are non-believers, I have come to the conclusion that there is a very fine line between SPD, ASD and true behavioral issues. I also now understand that what used to be categorized as behavioral, learning,social or communication challenges now seem to typically fall within Sensory Processing Disorder or the Autistic Spectrum Disorder.
Here is a statistic that I pulled off of the cdc.gov website. The CDC now reports that, "ASDs are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. CDC estimates that an average of 1 in 110 children in the U.S have an ASD." What constitutes a "significant" delay is completely subjective. Sometimes this subjectivity can be the difference b/w a child getting awarded services for early intervention.
Over the last two years I have come to understand that when a child has a Sensory Processing Disorder and/or an Autistic Spectrum Disorder it is pretty safe to assume that some outside trigger or series of triggers caused the actual behavioral reaction - putting to good use the quote, "For every action there is a reaction" The key to success with those that are borderline with either of these disorders is to find experts that can help you figure out what is going on with your child and setting goals to help them deal with the areas that don't come easy.
Many times figuring it out is a really difficult and stressful process. I am here to tell you that figuring it out and setting a plan of action to help your child deal with things that don't come easy to him/her is priceless. The reward well outweighs the long road to figuring out what is causing the symptoms. It is sort of like getting sick...... going to the Dr. a million times..getting tons of tests done that all come back negative.....and deciding that you will not give up until you figure out what is going on. It is that drive to find the answers that will lead you to success. It is the million and one visit that could give you the diagnosis you need in order to get better.
The key to staying sane through all of this is knowing when someone is objectively assessing your child vs subjectively assessing them. Trust me on this one as I know first hand what sort of assessment results can come from someone who makes up their mind about a child's behavior before they even begin assessing them. My advice on this topic is to take all of it with a grain of salt.
Keep an open mind, know what to listen to and what to brush off while being realistic about your situation. For example, if 10 professionals tell you one thing about your child's situation yet the 11th person says something completely opposite, it is pretty safe to assume that this 11th person is giving you inaccurate information. There is the rare situation that this 11th person may see something that no one else did. One could hold out hope that this one person has some sort of insight into their child that all of the other professionals didn't but to say that statement is the norm is a long shot.
I truly believe that a parent must do what he/she feels is best for their child and not what others feel is best for their child. If I listened to the opinions of many around me I would still be dealing with a very unhappy, misunderstood and lost child. Instead I went with my gut feeling and am now dealing with a very bright, happy and well understood child, set up with the tools to succeed socially, emotionally and educationally in a very tough world.
After 2.5 years of early intervention, a lot of guidance and support from experts, pushing away those that were or still are non-believers, I have come to the conclusion that there is a very fine line between SPD, ASD and true behavioral issues. I also now understand that what used to be categorized as behavioral, learning,social or communication challenges now seem to typically fall within Sensory Processing Disorder or the Autistic Spectrum Disorder.
Here is a statistic that I pulled off of the cdc.gov website. The CDC now reports that, "ASDs are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. CDC estimates that an average of 1 in 110 children in the U.S have an ASD." What constitutes a "significant" delay is completely subjective. Sometimes this subjectivity can be the difference b/w a child getting awarded services for early intervention.
Over the last two years I have come to understand that when a child has a Sensory Processing Disorder and/or an Autistic Spectrum Disorder it is pretty safe to assume that some outside trigger or series of triggers caused the actual behavioral reaction - putting to good use the quote, "For every action there is a reaction" The key to success with those that are borderline with either of these disorders is to find experts that can help you figure out what is going on with your child and setting goals to help them deal with the areas that don't come easy.
Many times figuring it out is a really difficult and stressful process. I am here to tell you that figuring it out and setting a plan of action to help your child deal with things that don't come easy to him/her is priceless. The reward well outweighs the long road to figuring out what is causing the symptoms. It is sort of like getting sick...... going to the Dr. a million times..getting tons of tests done that all come back negative.....and deciding that you will not give up until you figure out what is going on. It is that drive to find the answers that will lead you to success. It is the million and one visit that could give you the diagnosis you need in order to get better.
The key to staying sane through all of this is knowing when someone is objectively assessing your child vs subjectively assessing them. Trust me on this one as I know first hand what sort of assessment results can come from someone who makes up their mind about a child's behavior before they even begin assessing them. My advice on this topic is to take all of it with a grain of salt.
Keep an open mind, know what to listen to and what to brush off while being realistic about your situation. For example, if 10 professionals tell you one thing about your child's situation yet the 11th person says something completely opposite, it is pretty safe to assume that this 11th person is giving you inaccurate information. There is the rare situation that this 11th person may see something that no one else did. One could hold out hope that this one person has some sort of insight into their child that all of the other professionals didn't but to say that statement is the norm is a long shot.
I truly believe that a parent must do what he/she feels is best for their child and not what others feel is best for their child. If I listened to the opinions of many around me I would still be dealing with a very unhappy, misunderstood and lost child. Instead I went with my gut feeling and am now dealing with a very bright, happy and well understood child, set up with the tools to succeed socially, emotionally and educationally in a very tough world.
Sunday, June 12, 2011
Missed opportunities
My husband and I had the opportunity to go to dinner with some "new" friends this weekend and it was quite interesting to find out about the parallel worlds we seem to have lived in for the last few years. As we shared story after story, it was mind blowing how similar our family history, the paths of our relationships, our wedding planning drama and even current events were to one another.
To me, the most interesting part of our stories was how we (my friend and myself) took the tough path.........the one that made us look deep within ourselves and figure out what was best for us alone and our new families. On the other hand, our "loved ones" sat back and took the path of least resistance.........the one where they did not need to look deep inside themselves and admit they had anything to do with the inevitable parting of ways. Yet another "missed opportunity" to fix what started to break many many years ago.
Our families were quite different, yet the decisions to ignore things that didn't seem right, the inability to see the issues that were right in front of their eyes and the complete denial that there was any wrong done on their part was the same common theme. When it came to outcomes of many situations their inability to discuss their shortcomings or the situation in general, completely altered the outcome of many situations within both of our families..
In my heart, I strongly believe that the first step in fixing any situation is admitting there is an issue. Without the ability to admit your faults, there is no chance of fixing what is broken. The problem with that statement is that many people don't think there is anything wrong with their actions, behaviors or decisions nor do they care to hear from anyone else that there is something wrong. The last thing that a person in denial wants to hear is that they need help or that what they think, say and do may not always be the right thing to think, say or do.
The hardest part about having people like this in your family or circle of friends is that although you may love them, these relationships are toxic. Those unable to confront their fears or issues are stuck in their own reality and many times it drains the life out of those around them. Trying to help them see what is right in front of them is an impossible task to complete. For many, their reality is the only way of thinking about things and no matter how much you try to reason with them, they just can't accept another way of thinking.
My memory bank is filled with many great memories yet some of the most vivid memories I have revolve around the many "missed opportunities" to learn something from mistakes made. Unlike most members of my family, each and ever day I make the choice to learn something from every single moment in my life. I think about each day, the choices I made, the people I encountered, how I dealt with them and what I could have done differently to have possibly changed the situation or the outcome. Many times no matter what I did, the situation would end up with the same outcome, yet other times one thing said or done could have completely changed the course of any particular encounter.
I would not say that I don't make mistakes all of the time but what I am proud of is the fact that I can recognize my short coming and do my best to not make the same mistakes over and over again. Unfortunately many people stuck in their "world" of right and wrong, never open their eyes enough to see the big picture, or realize what they are missing out on b/c they know what they know and don't care to see life any other way.
After having kids I realized that I wish I could always look at life "through the eyes of a child" because doing so would make things more simple, more beautiful and without prejudice/bias. A simple smile, kind word or a hug is enough to make a child smile for hours. As an adult, most times a smile, kind word or hug happens as a reaction to something instead of a just because you felt like it sort of reaction.
Many say that I am the black sheep of my family, sort of like my great aunt....one that I love, respected and got along with better than almost anyone else in my family. My grandmother and I had a great relationship as well. Both of these family members were always there for me...........listening, laughing and talking to me without judgement.
When I didn't want to talk they were there with a hug, a smile or just to hang out. Never judging or pushing me to share my thoughts or do something that I didn't feel was in my best interest at the time. Almost as though they knew what I was thinking or feeling without even asking. Other members of my family would assume what I was thinking, avoid what I was trying to explain or were simply in denial of certain situations. In a nutshell avoidance was a big theme of my immediate family. A common theme between myself and the "new friends" I mention above.
What I came to realize at a very young age is that avoiding what is right in front of your eyes, doesn't make it go away. In fact avoiding things that should get attention or "band-aiding" them by trying to compensate in other ways eventually leads you down a path that ends with a crash and burn situation. I believe I am one of the lucky one's b/c I chose to learn from all of these situations, take the good and bad and learn to make the best of a tough situation.
Early intervention never came into my life but I believe that intervention, whether it be early or late in life is a great thing if/when the person needing the intervention to take place is ready for it. You have to be able to put yourself in a very vulnerable state before you can admit your shortcomings, learn how to deal with them and then find a way to benefit from the guidance and support of others.
I applaud each and every person who has allowed themselves to be this vulnerable!
To me, the most interesting part of our stories was how we (my friend and myself) took the tough path.........the one that made us look deep within ourselves and figure out what was best for us alone and our new families. On the other hand, our "loved ones" sat back and took the path of least resistance.........the one where they did not need to look deep inside themselves and admit they had anything to do with the inevitable parting of ways. Yet another "missed opportunity" to fix what started to break many many years ago.
Our families were quite different, yet the decisions to ignore things that didn't seem right, the inability to see the issues that were right in front of their eyes and the complete denial that there was any wrong done on their part was the same common theme. When it came to outcomes of many situations their inability to discuss their shortcomings or the situation in general, completely altered the outcome of many situations within both of our families..
In my heart, I strongly believe that the first step in fixing any situation is admitting there is an issue. Without the ability to admit your faults, there is no chance of fixing what is broken. The problem with that statement is that many people don't think there is anything wrong with their actions, behaviors or decisions nor do they care to hear from anyone else that there is something wrong. The last thing that a person in denial wants to hear is that they need help or that what they think, say and do may not always be the right thing to think, say or do.
The hardest part about having people like this in your family or circle of friends is that although you may love them, these relationships are toxic. Those unable to confront their fears or issues are stuck in their own reality and many times it drains the life out of those around them. Trying to help them see what is right in front of them is an impossible task to complete. For many, their reality is the only way of thinking about things and no matter how much you try to reason with them, they just can't accept another way of thinking.
My memory bank is filled with many great memories yet some of the most vivid memories I have revolve around the many "missed opportunities" to learn something from mistakes made. Unlike most members of my family, each and ever day I make the choice to learn something from every single moment in my life. I think about each day, the choices I made, the people I encountered, how I dealt with them and what I could have done differently to have possibly changed the situation or the outcome. Many times no matter what I did, the situation would end up with the same outcome, yet other times one thing said or done could have completely changed the course of any particular encounter.
I would not say that I don't make mistakes all of the time but what I am proud of is the fact that I can recognize my short coming and do my best to not make the same mistakes over and over again. Unfortunately many people stuck in their "world" of right and wrong, never open their eyes enough to see the big picture, or realize what they are missing out on b/c they know what they know and don't care to see life any other way.
After having kids I realized that I wish I could always look at life "through the eyes of a child" because doing so would make things more simple, more beautiful and without prejudice/bias. A simple smile, kind word or a hug is enough to make a child smile for hours. As an adult, most times a smile, kind word or hug happens as a reaction to something instead of a just because you felt like it sort of reaction.
Many say that I am the black sheep of my family, sort of like my great aunt....one that I love, respected and got along with better than almost anyone else in my family. My grandmother and I had a great relationship as well. Both of these family members were always there for me...........listening, laughing and talking to me without judgement.
When I didn't want to talk they were there with a hug, a smile or just to hang out. Never judging or pushing me to share my thoughts or do something that I didn't feel was in my best interest at the time. Almost as though they knew what I was thinking or feeling without even asking. Other members of my family would assume what I was thinking, avoid what I was trying to explain or were simply in denial of certain situations. In a nutshell avoidance was a big theme of my immediate family. A common theme between myself and the "new friends" I mention above.
What I came to realize at a very young age is that avoiding what is right in front of your eyes, doesn't make it go away. In fact avoiding things that should get attention or "band-aiding" them by trying to compensate in other ways eventually leads you down a path that ends with a crash and burn situation. I believe I am one of the lucky one's b/c I chose to learn from all of these situations, take the good and bad and learn to make the best of a tough situation.
Early intervention never came into my life but I believe that intervention, whether it be early or late in life is a great thing if/when the person needing the intervention to take place is ready for it. You have to be able to put yourself in a very vulnerable state before you can admit your shortcomings, learn how to deal with them and then find a way to benefit from the guidance and support of others.
I applaud each and every person who has allowed themselves to be this vulnerable!
Friday, June 10, 2011
A special thanks to my support system
This post goes out to all of those that have been supporting me through this journey so far. Each of you helping me in your own way and several of you are now following this blog. A friend of mine asked how I felt when I got my son's IEP results and found out that he was approved for services under the category of Autistic Like Behaviors.
My initial reaction was extremely mixed. I was not sure how to feel. I knew that this category in no way labeled him as having autism nor was it a diagnosis. In fact I came to find out that it was quite the opposite. It was the result of 7 professionals opinions, observations and many many assessment results compiled, reviewed, discussed and put into a plan of action to help my son continue his journey toward accomplishing the goals set for him over a year ago.
As a team, the conclusion was that he had enough behaviors to qualify for services. Knowing that he qualified for the early intervention services he needed in order to continue his growth well outweighed any one qualifying factor. My only concern is that my child gets what he needs to give him the best opportunity for success and happiness as he grows up. Right now I am 100% confident that we are on the right journey for him and for our family.
On another topic, I need to thank one of my friends for a comment she made to me the other day. She told me that when she had her child assessed by the Regional Center the gap in time b/w her child's first assessment and the final assessment was large enough for him to have changed behaviors due to the early intervention she was paying for out of pocket. I was shocked that this took place and then the same thing almost happened to me today.
Today, the regional center called me to set up our son's final assessment. They wanted to set up this meeting for mid August, stating that the calendar was being booked 2 months out for this assessment. I found that to be unacceptable since we started this process mid April, had the 2nd assessment mid May and they wanted to wait another 2 months for the final assessment. I thought back to what my friend had told me just a day ago and realized that if we waited another 2 months for the final evaluation it was very likely that my child would do what hers did........assess as though he was a different child.
I stood my ground, reasoned with the person at the office and finally came to an agreement that worked for me. Instead of waiting another 2 months for an assessment, my son is now having his final assessment next week. Persistence pays off when you do it the right way. You have to be stern, yet sincere. Don't lose your cool, find a way to stand your ground for what you believe in and most of all, keep your eye on the goal.........to make sure you child gets what he/she needs in order to be happy, confident and comfortable in his/her own skin.
For the first time in a long time I am very optimistic about a happy and bright future for our amazing first born son.
My initial reaction was extremely mixed. I was not sure how to feel. I knew that this category in no way labeled him as having autism nor was it a diagnosis. In fact I came to find out that it was quite the opposite. It was the result of 7 professionals opinions, observations and many many assessment results compiled, reviewed, discussed and put into a plan of action to help my son continue his journey toward accomplishing the goals set for him over a year ago.
As a team, the conclusion was that he had enough behaviors to qualify for services. Knowing that he qualified for the early intervention services he needed in order to continue his growth well outweighed any one qualifying factor. My only concern is that my child gets what he needs to give him the best opportunity for success and happiness as he grows up. Right now I am 100% confident that we are on the right journey for him and for our family.
On another topic, I need to thank one of my friends for a comment she made to me the other day. She told me that when she had her child assessed by the Regional Center the gap in time b/w her child's first assessment and the final assessment was large enough for him to have changed behaviors due to the early intervention she was paying for out of pocket. I was shocked that this took place and then the same thing almost happened to me today.
Today, the regional center called me to set up our son's final assessment. They wanted to set up this meeting for mid August, stating that the calendar was being booked 2 months out for this assessment. I found that to be unacceptable since we started this process mid April, had the 2nd assessment mid May and they wanted to wait another 2 months for the final assessment. I thought back to what my friend had told me just a day ago and realized that if we waited another 2 months for the final evaluation it was very likely that my child would do what hers did........assess as though he was a different child.
I stood my ground, reasoned with the person at the office and finally came to an agreement that worked for me. Instead of waiting another 2 months for an assessment, my son is now having his final assessment next week. Persistence pays off when you do it the right way. You have to be stern, yet sincere. Don't lose your cool, find a way to stand your ground for what you believe in and most of all, keep your eye on the goal.........to make sure you child gets what he/she needs in order to be happy, confident and comfortable in his/her own skin.
For the first time in a long time I am very optimistic about a happy and bright future for our amazing first born son.
Kids and Cars
The more I think about it the more I come to the conculsion that kids are like cars. Each has their own set of symptoms but diagnosing what is really going on is the tough part. Cars talk in squeeks and strange noises and kids talk through their actions or lack there of actions. Either way, it is easy to see or hear that there is something wrong but sometimes it is almost impossible to diagnose what is causing the issues to occur.
Over the last two years I heard many many opinions and comments from friends, families and strangers - "it's a good thing your kid is cute", "he has such a kind heart and he tries so hard, if he just wasn't so difficult to deal with he would be great", "your kid has a behavior problem", "let me teach you how to deal with his reactions, I can help you stop his meltdowns or tantrums", "there is nothing wrong with your kid, he is just being a boy" "you think that was a meltdown, that was just a little tantrum b/c he didn't get what he wanted", "wow, he has really matured over the last few months", "he is such a kind hearted child", "whatever you have been doing to help him...keep it up" and finally, "you are an advocate for your child, you should share your story for others to find hope and ways to keep moving past the red tape and get their child the help they need"
As you can see, the comments and opinions went 360, but what most people didn't know was that my son had been receiving many many hours of early intervention services so that we could figure out the cause of his issues instead of just treating the symptoms. Although we still don't know the underlying cause of his reactions in certain situations (some days he can self regulate and other days he is just a loose cannon) what we do know with 100% certainty, is that we are on the right path and that every step we have taken thus far has led us a little closer to the answers we have been seeking for over 2 years.
So if you are reading this post and in anyway feel that your situation is like that undiagnosed sound under the hood of your car, don't give up............keep peeling back the layers, one symptom at a time.........eventually you will find the cause and once you do you will be able to work toward fixing it.
Over the last two years I heard many many opinions and comments from friends, families and strangers - "it's a good thing your kid is cute", "he has such a kind heart and he tries so hard, if he just wasn't so difficult to deal with he would be great", "your kid has a behavior problem", "let me teach you how to deal with his reactions, I can help you stop his meltdowns or tantrums", "there is nothing wrong with your kid, he is just being a boy" "you think that was a meltdown, that was just a little tantrum b/c he didn't get what he wanted", "wow, he has really matured over the last few months", "he is such a kind hearted child", "whatever you have been doing to help him...keep it up" and finally, "you are an advocate for your child, you should share your story for others to find hope and ways to keep moving past the red tape and get their child the help they need"
As you can see, the comments and opinions went 360, but what most people didn't know was that my son had been receiving many many hours of early intervention services so that we could figure out the cause of his issues instead of just treating the symptoms. Although we still don't know the underlying cause of his reactions in certain situations (some days he can self regulate and other days he is just a loose cannon) what we do know with 100% certainty, is that we are on the right path and that every step we have taken thus far has led us a little closer to the answers we have been seeking for over 2 years.
So if you are reading this post and in anyway feel that your situation is like that undiagnosed sound under the hood of your car, don't give up............keep peeling back the layers, one symptom at a time.........eventually you will find the cause and once you do you will be able to work toward fixing it.
Thursday, June 9, 2011
Early Intervention: The Zax Bypass - lessons learned
Early Intervention: The Zax Bypass - lessons learned: "'by Dr. SeussFrom The Sneetches and Other StoriesCopyright 1961 by Theodor S. Geisel and Audrey S. Geisel, renewed 1989 One day, making t..."
The Zax Bypass - lessons learned
"by Dr. SeussFrom The Sneetches and Other StoriesCopyright 1961 by Theodor S. Geisel and Audrey S. Geisel, renewed 1989
One day, making tracksIn the prairie of Prax,Came a North-Going ZaxAnd a South-Going Zax.
And it happened that both of them came to a placeWhere they bumped. There they stood.Foot to foot. Face to face.
“Look here, now!” the North-Going Zax said, “I say!You are blocking my path. You are right in my way.I’m a North-Going Zax and I always go north.Get out of my way, now, and let me go forth!”
“Who’s in whose way?” snapped the South-Going Zax.“I always go south, making south-going tracks.So you’re in MY way! And I ask you to moveAnd let me go south in my south-going groove.”
Then the North-Going Zax puffed his chest up with pride.“I never,” he said, “take a step to one side.And I’ll prove to you that I won’t change my waysIf I have to keep standing here fifty-nine days!”
“And I’ll prove to YOU,” yelled the South-Going Zax,“That I can stand here in the prairie of PraxFor fifty-nine years! For I live by a ruleThat I learned as a boy back in South-Going School.Never budge! That’s my rule. Never budge in the least!Not an inch to the west! Not an inch to the east!I’ll stay here, not budging! I can and I willIf it makes you and me and the whole world stand still!”
Well…Of course the world didn’t stand still. The world grew.In a couple of years, the new highway came throughAnd they built it right over those two stubborn ZaxAnd left them there, standing un-budged in their tracks."
I am quoting this Dr. Seuss story b/c to me it is a great representation of one of the path's I could have taken on my journey to help my son. For about 6 months I tried to get into our local Regional center for an assessment without success. I called and called, first being told someone would call me back, then that they couldn't find the paperwork my out of state center had sent to them for review and admission, then finally being told about a waiting list. By this time 6 months has passed, a lot of frustration had built and I did just what the Zax do above, NOTHING. I hung up the phone feeling defeated and not knowing that they had an obligation to me and my son to actually assess him and provide services to him in order to give him the early intervention that he needed in areas that he was significantly delayed.
At this time my son, only 2 years old, had a speech delay, some social delay and a few other minor things that were definitely in progress of growth. Not knowing my rights when I moved to my new state, these services and my push for assistance stopped there..but only for a short time.
Thankfully, after another 6 months, this time of doing nothing but feeling frustrated and wondering what I can do next, I chose to not just stand in my tracks anymore waiting and hoping for the other person to make the first move. I decided to once again take a stand for my son's well being. I was referred to a development psychologist that came and assessed our son at home.....this led to working briefly with an OT which then led me to have the psychologist observe him in his school environment. This evaluation led us to change preschool's for my son due to the lack of flexibility the director of the preschool had when it came to early intervention. The new preschool was a great change for him......
In this new school he started to learn many of the social skills he was lacking, his language grew and in no time he was talking in full sentences, making some great friends and was an all around much happier child. My story doesn't end here and I am not sure that it will ever end. There may always be a need for some sort of extra support for my child. So a year goes by and he starts a new classroom, this time things start out great and then I am told he begins to spiral backwards in some of these ever evolving areas. After 6 months of asking the teachers if everything was ok, and being told yes yes, he is doing what is age appropriate, etc I found out that there were some sensory, self regulation, transition and social interaction issues that the teachers just couldn't support on their own. The teachers said they needed help as they just weren't sure how to give our son the attention and support he needed to continue to grow and thrive in their classroom. Today I thank them for letting go of their pride and reaching out to me with these concerns. This is another moment of truth that would change my son's life forever.
At this time, in my mind, I had no choice but to go out and get additional help for my son. Did it cost me a small fortune, well of course it did, BUT it also changed the course of his life. With the development psychologist by my side, along with the teachers, pre-school administrators, my husband and a few close friends who were going through similar issues, I found the strength and courage to continue to ask for help and guidance in the areas that I lacked knowledge and expertise.
By the time the end of Decemeber 2010 rolled around I had my son's own little "dream team" in place. We had the psychologist, the OT, a shadow/aid, teachers, friends etc. I found a group of friends that could support me 100% and stand behind me to push me forward when I wanted to quit this journey.
In early 2011 I found out from this team of experts that my son should never have been turned away from the regional center, that no child under 3 was to be turned away for an assessment. I also found out that we had the right to get an IEP and that potentially many of the services I was providing for my son out of pocket could/would be paid for by the school district and/or the states regional center. This begins the next phase of my journey to finding out what was truly going on with my son and getting him every single service possible to assist him in becoming his best self....stay tuned for more
For those of you reading this blog for the first time, it is simply a story of my journey and in no way stating that anyone should do things the way I am doing them or take my information as "the law" it is simply a way to share with others what my family and I went through to get to where we are today, those that helped us through each step and about the journey that lies ahead of us.
A very important lesson I learned along my journey thus far is if you want what is best for your child, and your sanity for that matter :)..........don't be a "Zax" and just stand still thinking that someone else will make this happen for you. You control your own destiny and that of your child's when he/she is too young to have a voice. Be strong, take action and don't take no for an answer! If you don't stand up for your child, who will?
Feel free to comment, ask questions or just follow along on our journey
One day, making tracksIn the prairie of Prax,Came a North-Going ZaxAnd a South-Going Zax.
And it happened that both of them came to a placeWhere they bumped. There they stood.Foot to foot. Face to face.
“Look here, now!” the North-Going Zax said, “I say!You are blocking my path. You are right in my way.I’m a North-Going Zax and I always go north.Get out of my way, now, and let me go forth!”
“Who’s in whose way?” snapped the South-Going Zax.“I always go south, making south-going tracks.So you’re in MY way! And I ask you to moveAnd let me go south in my south-going groove.”
Then the North-Going Zax puffed his chest up with pride.“I never,” he said, “take a step to one side.And I’ll prove to you that I won’t change my waysIf I have to keep standing here fifty-nine days!”
“And I’ll prove to YOU,” yelled the South-Going Zax,“That I can stand here in the prairie of PraxFor fifty-nine years! For I live by a ruleThat I learned as a boy back in South-Going School.Never budge! That’s my rule. Never budge in the least!Not an inch to the west! Not an inch to the east!I’ll stay here, not budging! I can and I willIf it makes you and me and the whole world stand still!”
Well…Of course the world didn’t stand still. The world grew.In a couple of years, the new highway came throughAnd they built it right over those two stubborn ZaxAnd left them there, standing un-budged in their tracks."
I am quoting this Dr. Seuss story b/c to me it is a great representation of one of the path's I could have taken on my journey to help my son. For about 6 months I tried to get into our local Regional center for an assessment without success. I called and called, first being told someone would call me back, then that they couldn't find the paperwork my out of state center had sent to them for review and admission, then finally being told about a waiting list. By this time 6 months has passed, a lot of frustration had built and I did just what the Zax do above, NOTHING. I hung up the phone feeling defeated and not knowing that they had an obligation to me and my son to actually assess him and provide services to him in order to give him the early intervention that he needed in areas that he was significantly delayed.
At this time my son, only 2 years old, had a speech delay, some social delay and a few other minor things that were definitely in progress of growth. Not knowing my rights when I moved to my new state, these services and my push for assistance stopped there..but only for a short time.
Thankfully, after another 6 months, this time of doing nothing but feeling frustrated and wondering what I can do next, I chose to not just stand in my tracks anymore waiting and hoping for the other person to make the first move. I decided to once again take a stand for my son's well being. I was referred to a development psychologist that came and assessed our son at home.....this led to working briefly with an OT which then led me to have the psychologist observe him in his school environment. This evaluation led us to change preschool's for my son due to the lack of flexibility the director of the preschool had when it came to early intervention. The new preschool was a great change for him......
In this new school he started to learn many of the social skills he was lacking, his language grew and in no time he was talking in full sentences, making some great friends and was an all around much happier child. My story doesn't end here and I am not sure that it will ever end. There may always be a need for some sort of extra support for my child. So a year goes by and he starts a new classroom, this time things start out great and then I am told he begins to spiral backwards in some of these ever evolving areas. After 6 months of asking the teachers if everything was ok, and being told yes yes, he is doing what is age appropriate, etc I found out that there were some sensory, self regulation, transition and social interaction issues that the teachers just couldn't support on their own. The teachers said they needed help as they just weren't sure how to give our son the attention and support he needed to continue to grow and thrive in their classroom. Today I thank them for letting go of their pride and reaching out to me with these concerns. This is another moment of truth that would change my son's life forever.
At this time, in my mind, I had no choice but to go out and get additional help for my son. Did it cost me a small fortune, well of course it did, BUT it also changed the course of his life. With the development psychologist by my side, along with the teachers, pre-school administrators, my husband and a few close friends who were going through similar issues, I found the strength and courage to continue to ask for help and guidance in the areas that I lacked knowledge and expertise.
By the time the end of Decemeber 2010 rolled around I had my son's own little "dream team" in place. We had the psychologist, the OT, a shadow/aid, teachers, friends etc. I found a group of friends that could support me 100% and stand behind me to push me forward when I wanted to quit this journey.
In early 2011 I found out from this team of experts that my son should never have been turned away from the regional center, that no child under 3 was to be turned away for an assessment. I also found out that we had the right to get an IEP and that potentially many of the services I was providing for my son out of pocket could/would be paid for by the school district and/or the states regional center. This begins the next phase of my journey to finding out what was truly going on with my son and getting him every single service possible to assist him in becoming his best self....stay tuned for more
For those of you reading this blog for the first time, it is simply a story of my journey and in no way stating that anyone should do things the way I am doing them or take my information as "the law" it is simply a way to share with others what my family and I went through to get to where we are today, those that helped us through each step and about the journey that lies ahead of us.
A very important lesson I learned along my journey thus far is if you want what is best for your child, and your sanity for that matter :)..........don't be a "Zax" and just stand still thinking that someone else will make this happen for you. You control your own destiny and that of your child's when he/she is too young to have a voice. Be strong, take action and don't take no for an answer! If you don't stand up for your child, who will?
Feel free to comment, ask questions or just follow along on our journey
Wednesday, June 8, 2011
IEP
There are many reasons a child may need an IEP and I highly encourage every mom and dad that has concerns about their child's growth and development to reach out and request an IEP. There is no charge for an IEP and if your child happens to qualify for one, he/she would be eligible for one or several services to assist them in their progress toward social/emotional and/or academic growth and development.
In my opinion, there is no better gift you can give your child. The tools to be a happy, confident person will carry them far within their lifetime.
When I was a child no one talked about ADD, ADHD, Autistic Like Behaviors or Autistic Spectrum Disorders. There were kids in the "special classroom" and those that were mainstreamed. The only thing I remember hearing about as a child was the term "learning disability" This could mean that the person was autistic, dyslexic, had behavioral issues, ADD or any other "issue" that affected his/her learning.
38 years later, there are so many potential reasons for a child to be given an IEP from their school districts assessment team and possibly awarded free services to assist in bettering the child's chances of academic and social/emotional success.
We had the opportunity to have our son assessed and it is one of the best things we have done as parents so far. I will post again soon about our road to the IEP and where we go next.
In my opinion, there is no better gift you can give your child. The tools to be a happy, confident person will carry them far within their lifetime.
When I was a child no one talked about ADD, ADHD, Autistic Like Behaviors or Autistic Spectrum Disorders. There were kids in the "special classroom" and those that were mainstreamed. The only thing I remember hearing about as a child was the term "learning disability" This could mean that the person was autistic, dyslexic, had behavioral issues, ADD or any other "issue" that affected his/her learning.
38 years later, there are so many potential reasons for a child to be given an IEP from their school districts assessment team and possibly awarded free services to assist in bettering the child's chances of academic and social/emotional success.
We had the opportunity to have our son assessed and it is one of the best things we have done as parents so far. I will post again soon about our road to the IEP and where we go next.
Tuesday, June 7, 2011
Are you brave enough to ask for help?
Are you brave enough to ask for help? Some say that if you reach out for help you are weak and others say it means you are brave. I believe that asking for help is a sign of strength and courage. A trait that I wish more people had especially when it comes to helping their children.
I have several friends who know their child needs help, want to get them that help and either don't know where to go for help or are too afraid to ask for it. Some others go out and seek the help but are too scared to go and find out the results for fear of finding out that something is wrong with their child. Stating that this person or that person said they would help me get the answers but I am not getting any help from them. I share my experiences with all of these friends and tell them that no one is going to be able to help your child like you can, whether its helping them yourself or reaching out for someone with an expertise to help you help them. Whether or not You the parent asks for help is your choice. Keep in mind that either way you still are making a difference in your child's life. One that will either positively or negatively affect them for the rest of their years. It is your choice as it was mine to ask for help.
I read a post this morning that said something like, we all want to think our kids are awesome and perfect and there is nothing wrong with them. I actually found that comment quite interesting. If the parent thinks that to be the case then my opinion is that maybe they also need some assistance in seeing reality vs a world they wish they lived in. I agree with them that we all want to believe that to be the case but the reality of it is we all need help at some point in our lives. The outcome lies in whether or not we choose to do something about it.
It was extremely hard to let down my pride and ask for help but after seeing things in my son that I saw in other family members growing up I knew I had to do something and fast. The last thing I wanted for my child was for him to grow up with self esteem issues, anger management issues and the inability to make lasting friendships which is exactly what this family member has grown into as an adult.
The reason for my blog is this: I mentioned something about wanting to become an advocate for early intervention services to several of my friends and the early intervention team I work with for my son and their response was but you already are an advocate. This comment made me think......well if that is the case, why not blog about my experiences and see if I can help others out there find a way to get their child early intervention in whatever way they need it.
I will continue to share my journey and write about my past, my son's past, where we started, where we are today and where we go next. I am certain that some will enjoy reading what I write and some will have have very different opinions. Either way, they are just my thoughts and this is just my blog to do with what I want.
I welcome comments and questions as I am hoping this blog allows me to help someone quicker than I was helped. I lost a year and a half of early intervention services b/c I didn't know my rights as a parent. I am hoping that this blog allows me to help others figure out how to cut through the red tape instead of having to go through all of the headaches family had to endure to get to where we are today.
I have several friends who know their child needs help, want to get them that help and either don't know where to go for help or are too afraid to ask for it. Some others go out and seek the help but are too scared to go and find out the results for fear of finding out that something is wrong with their child. Stating that this person or that person said they would help me get the answers but I am not getting any help from them. I share my experiences with all of these friends and tell them that no one is going to be able to help your child like you can, whether its helping them yourself or reaching out for someone with an expertise to help you help them. Whether or not You the parent asks for help is your choice. Keep in mind that either way you still are making a difference in your child's life. One that will either positively or negatively affect them for the rest of their years. It is your choice as it was mine to ask for help.
I read a post this morning that said something like, we all want to think our kids are awesome and perfect and there is nothing wrong with them. I actually found that comment quite interesting. If the parent thinks that to be the case then my opinion is that maybe they also need some assistance in seeing reality vs a world they wish they lived in. I agree with them that we all want to believe that to be the case but the reality of it is we all need help at some point in our lives. The outcome lies in whether or not we choose to do something about it.
It was extremely hard to let down my pride and ask for help but after seeing things in my son that I saw in other family members growing up I knew I had to do something and fast. The last thing I wanted for my child was for him to grow up with self esteem issues, anger management issues and the inability to make lasting friendships which is exactly what this family member has grown into as an adult.
The reason for my blog is this: I mentioned something about wanting to become an advocate for early intervention services to several of my friends and the early intervention team I work with for my son and their response was but you already are an advocate. This comment made me think......well if that is the case, why not blog about my experiences and see if I can help others out there find a way to get their child early intervention in whatever way they need it.
I will continue to share my journey and write about my past, my son's past, where we started, where we are today and where we go next. I am certain that some will enjoy reading what I write and some will have have very different opinions. Either way, they are just my thoughts and this is just my blog to do with what I want.
I welcome comments and questions as I am hoping this blog allows me to help someone quicker than I was helped. I lost a year and a half of early intervention services b/c I didn't know my rights as a parent. I am hoping that this blog allows me to help others figure out how to cut through the red tape instead of having to go through all of the headaches family had to endure to get to where we are today.
Early Intervention: Why I decided to start a blog
Early Intervention: Why I decided to start a blog: "For the last 2.5 years I have been doing everything in my power to give my first born every single opportunity to gain skills in areas that ..."
Why I decided to start a blog
For the last 2.5 years I have been doing everything in my power to give my first born every single opportunity to gain skills in areas that he has been lacking since birth. I felt that it was my duty to do so as a parent and I am so glad that I took that chance even though it meant some sacrifice for myself and my husband. I believe that this was one of the best decisions I have made in my life to date.
When my first son was 23 months old we started speech/language services through infant and toddlers program. This was a free program. We found out about it from our pediatirican who recommended that we get our son assessed for these services. We spent about 2 months working with this therapist before moving across the country. Prior to moving I had all of the paperwork sent to the Regional Center in our local area, had copies of all the reports made and found the number to call once we arrived in our new location.
Unfortunately having all of this information with me didn't give me the one piece of information I needed in order to keep these services going when we got to this new location. I called and called for 6 months trying to get my son in for an assessment. First I was told someone would call me back, then I was told that they weren't sure if it mattered if my paperwork was there or not, then I got a script from our new pediatrician and that still didn't work. Finally I was told that there was a waiting list. After 6 months of trying I finally gave up. Giving up was one of the worst decisions I have made in my life to date. The reason being, I was never supposed to be turned away. I found out just 4 months ago that under the age of 3 every child has the right to be assessed for services from a regional center. Unfortunately this was the one piece of information no one shared with me and a piece of information that would take the next 2 years of our lives in a completely different direction that it would have taken if I had known my rights.
When my son was about 30 months old I heard about a developmental psychologist that had helped a friend of mine. The day we met this person was a huge turning point for our family. Since deciding to spend countless hours and countless dollars to help our son we have had to deal with so many different comments, opinions on whether or not early intervention for someone's child is necessary or worth the time and effort.
I am here to say that it is worth every penny, every minute and every comment you may hear from a non-believer. In the days and months to come I will share more and more of my story. I will talk about what we went through to get to where we are today, provide update on what we are going through now and our plans for where we go next. I will also talk about what happened that led me to seek out help in the first place, why I believe that every child can use some sort of early intervention and most of all why it is so important to never give up on your child and most importantly why it is ok to let go of your pride and ask for help.
When my first son was 23 months old we started speech/language services through infant and toddlers program. This was a free program. We found out about it from our pediatirican who recommended that we get our son assessed for these services. We spent about 2 months working with this therapist before moving across the country. Prior to moving I had all of the paperwork sent to the Regional Center in our local area, had copies of all the reports made and found the number to call once we arrived in our new location.
Unfortunately having all of this information with me didn't give me the one piece of information I needed in order to keep these services going when we got to this new location. I called and called for 6 months trying to get my son in for an assessment. First I was told someone would call me back, then I was told that they weren't sure if it mattered if my paperwork was there or not, then I got a script from our new pediatrician and that still didn't work. Finally I was told that there was a waiting list. After 6 months of trying I finally gave up. Giving up was one of the worst decisions I have made in my life to date. The reason being, I was never supposed to be turned away. I found out just 4 months ago that under the age of 3 every child has the right to be assessed for services from a regional center. Unfortunately this was the one piece of information no one shared with me and a piece of information that would take the next 2 years of our lives in a completely different direction that it would have taken if I had known my rights.
When my son was about 30 months old I heard about a developmental psychologist that had helped a friend of mine. The day we met this person was a huge turning point for our family. Since deciding to spend countless hours and countless dollars to help our son we have had to deal with so many different comments, opinions on whether or not early intervention for someone's child is necessary or worth the time and effort.
I am here to say that it is worth every penny, every minute and every comment you may hear from a non-believer. In the days and months to come I will share more and more of my story. I will talk about what we went through to get to where we are today, provide update on what we are going through now and our plans for where we go next. I will also talk about what happened that led me to seek out help in the first place, why I believe that every child can use some sort of early intervention and most of all why it is so important to never give up on your child and most importantly why it is ok to let go of your pride and ask for help.
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For the last 2.5 years I have been doing everything in my power to give my first born every single opportunity to gain skills in areas that ...
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