The Wind Beneath My Wings

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.

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!

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.

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.

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.

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.

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.