I hope my words inspire resilience in your quest to find your inner voice and courage to take inspired action in life. 12+ years ago, through the support of confidants, experts and sometimes strangers, I began to trust my voice. This blog takes you through stages of my lessons, growth & frustration, from a mom often in unchartered waters. Through these experiences, I help others unscramble the words necessary to speak up & bloom.
Wednesday, August 29, 2012
Happiness
Happiness comes in many forms, sometimes is hard to see
Happiness means love, success and sometimes feeling free
Happiness can be a smile from a stranger on the road
Happiness can be a helping hand just when you are carrying a heavy load
Happiness is what I feel each time I see my boys
Happiness is the way they smile when they sit down and play with their toys
Happiness is knowing I have done everything I can each and every day
to show my boys how much I love them in many different ways
Happiness is what you make it, small or large in size
Happiness is about unconditional love, not so much about being wise
Happiness is a warm smile or hug from my husband for no reason at all
Happiness is knowing he is there to support me and catch me when I fall
Happiness is a choice; the choice is up to you
Tuesday, August 28, 2012
You just never know when...........
You just never know when something you share will impact another person. It is quite interesting how life works and how when you least expect it, you can make an impact on someone's life or on many lives with just a few words. This post stems from a conversation I had this afternoon. I decided to share my blog site with an acquaintance of mine. I don't say friend, only because we never really knew each other as kids, just knew of one another yet as adults we have met and been able to connect and influence one another's lives. After reading last night's post Turn that frown upside down...and away we go she sent me a note saying that a family member of hers had their 3 year old in early intervention services because "he's almost 3 and isn't really talking yet, which frustrates him that he can’t' communicate so now he acts out a lot, hitting and tantrums, the works". She went onto say that she would likely share my blog with the loved one's in hopes of helping them realize that without a more focused effort to help her kid, counseling can only do so much. She wants to help this family member and thinks that maybe, just maybe reading my story will show them that the effort they put into their child now will make a difference later on in his life. Smiling inside and out as I read her note and feeling a bit of self accomplishment, because this is why I blog about our journey. It is partially to help me through the process, but more so to help others see that they are not alone, that it happens to many of us and for those that aren't afraid to jump in head first and "sink or swim" with their kids, the benefits well outweigh the low points.
I went on to tell her that it is amazing what a difference it makes when all parties are on the same page. I let her know that if the child's parents, teachers, specialist and family members are not on the same page, the child will not reap the true rewards of early intervention. I also stated that if the parent's are not willing to put in the time and effort on the back end it is NOT going to be worth any of the money they put in on the front end to have their child meet with the counselor and/or other specialists.
In no way am I the expert on what to do or not do, yet I can comfortably and confidently make the above statements because I know firsthand what it is like to deny and then embrace this journey. I also have friends who just sent their kids for OT, Speech, ABA etc but did nothing at home to keep things consistent for their child. When they couldn’t figure out why nothing was moving along in the form of bettering some of the behaviors, in the kindest way possible, I told them to look in the mirror. It may sound harsh, but the reality of it is this: If you have a child with any sort of special needs/delay, their situation will only improve if you are willing to put in as much time and effort as they are to make it happen. It is not a one sided heads up coin; it is a two sided coin with lots up heads and even more tails.
The conversation continued via messenger. Moving on to asking how differently the child acted at home vs. in school and if this child had ever been evaluated for ABA services.
They didn't think the child had any ABA services thus far. She knew that he went to preschool and that his behavior seemed to be ok while at school. While things seemed to be going ok at school, it was falling apart on the home front. My response to that follows: In my experience and from working with numerous experts; It is not uncommon for more of the behaviors to come out at home vs. in school. Many times kids are "on" while at school and once in the comfort of their home, many of the behaviors come out in full force - sometimes it is due to behavior, speech or social delays and other times just a kid looking for some sort of attention. I let her know that I don’t know her loved one's situation well enough to even venture a guess as to what the triggers are for his behavior, but consistency both inside and outside of the house does affect a child's behavior. Many other factors influence behavior, but inconsistent messages from parents and caregivers can definitely cause issues. As for ABA - I recommended they get him assessed by their local regional/early start center - it is a free assessment and if he needs services they can figure out who and what is best. I also said that their pediatrician should be able to lead them in the right direction.
Tonight's blog was written because I imagine that there are many other parents out there with no answers, nowhere to turn and completely frustrated by their child and their situation. I only hope that other's read this post, and if they find themselves feeling this way, find it within themselves to ask for help. It may be the hardest thing they ever do, but I am quite confident that they won't regret it.
Monday, August 27, 2012
Turn that frown upside down...and away we go
Friday was a roller coaster of emotions. My oldest went from happy to sad to anxious and back to happy again for hours and hours. Not knowing which emotion would come next, I "tiptoed" around him while trying my best to stay strong, stern and consistent in my message that the behavior he was displaying was not acceptable. No matter what I did, he was not cooperating, nor self regulating enough to calmly discuss what he was feeling inside.
After heading to our basement to read book on his own, I decided to once again try and talk to him about why he was having such "a day". I was pleasantly surprised to see him smiling and asking me to watch his "show". He politely asked me to sit on the alphabet carpet; specifically the letter A and watch his Winnie the Pooh collection show. As he danced to the music and turned the pages of the book, I watched and thought about what was going on in that little mind of his at that very moment in time. The show lasted about 15 minutes and so did the smile.
As soon as it was over, he once again began a meltdown; yet this time nothing I did or said seemed to help it. Finally I chose to walk upstairs and give him some space. Sometimes that is the only way to get him to self regulate - give him some time to figure it out on his own and he will eventually calm himself down. Well not this time. Less than 5 minutes after I left him downstairs, I hear him run up the stairs, into his room and slam the door. By this time, I am really at a loss because this is something that I have not seen or heard from him in months. This is the old kid, not the one who has worked so hard over the last 3 years to understand his little brain and body and figure out how everything within both areas work together. I decided to give him a few minutes before heading upstairs and into his room.
When I finally opened the door to his room, I found him sitting on his window ledge, looking like he had just lost his favorite stuffed dog and looking at a photo album given to him by his teachers at OPNS, his last preschool. He was singing when somebody loves me(from the scene in Toy Story 2 when Jessie is looking out the window reminiscing about her time with the little girl who loved her before giving her away)
I slowly walked over to where he was sitting, knelt down beside him and said baby what's wrong; why do you look so sad. He looked up at me and said, mommy I really miss my friends and my teachers. None of them came with me to Maryland and I'm sad. Tears welled up in my eyes as I reassured him that it was ok to feel scared and anxious about starting a new school and reminded him that he didn't know anyone when we went to OPNS in the summer of 2011. For the next few minutes we sat next to each other, as he asked me questions about where each picture was taken. Slowly but surely, the anxiety left his face and his frown turned upside down. He told me he felt better and asked me for a snack.
While the events leading up to our little “heart to heart” saddened me and brought a frown to my face, the ability for him to communicate his feelings, understand that everything is going to be ok and move forward by not letting it ruin his whole day brought a huge smile to my face. It made me realize that although these “episodes” are still a part of who he is, they no longer define him. He has the tools he needs to make it through any situation, we just need to be patient, support him and keep things consistent for him. We need to continue throwing obstacles his way, in a safe environment, so that he can continue to grow and learn new ways to deal with whatever it is life throws his way.
Kindergarten began today and although Friday was filled with meltdowns and anxiety, today was a great day. We walked to school with a group of other kids and parents; some with their little boy or girl just beginning Elementary school and others in older grades. Regardless of their age, we all walked up the hill and across the street to the school. It was great to have so many neighbors going to school with us. I believe it helped keep our son focused and excited about starting school.
As we approached the front door of the school, my oldest took off running with some of the other kids. With my 2 year old at my hip, we ran after him, around the corner and into the school cafeteria. He ran over to the teacher and sat down on his bench. Looking around, he realized that kids at the next table were coloring. Very politely, he said, excuse me and asked, am I going to get some paper to color? The teacher looked at him, smiled and said, in a minute. Instead of getting anxious and melting down, he said ok. He sat patiently as she talked to one of the parents and then handed him some paper so that he could color with his new friends. It was at that moment that I knew he was in good hands and in a good place within himself. I scooped up my little one, gave my big boy a high five and told him to have a great day. I would see him after school.
Throughout the day my mind often wandered off, wondering what he was doing on his first day of Elementary school. When the end of the school day came I walked up the hill, across the street and over to the school with some of the mom’s from our neighborhood. After waiting about 10 minutes, one of the teachers walked out with my big guy. She told me that he said he was supposed to get on on the bus. I smiled and said, no, he is mistaken. He was adamant about it though and it took me a few minutes to calm him down and explain that we walked home with our neighbors just as we walked to school with them. Thinking that he was likely hungry, I offered him a snack and continued with my explanation as to why he didn’t take the bus. For a few moments, we stood looking at the buses and talking about how some kids rode and some kids walked. With food in his belly, he was able to calm himself down before going into anxiety overload. What a satisfying thing to see. The teacher went on to tell me that other than J getting in line for a school lunch instead of sitting down with those who brought one, his day went very well. In his case, he may think he hit the jackpot – 2 lunches, so much to choose from – what a treat.
As I sit here now, typing away, I continue to be empowered by my oldest. His determination to fit in, to find his way in this world and to just be the best he can be, makes me strive every day to be a better me. I think back on all of the hours of hard work, tears, meetings and phone calls and am certain that none of it was wasted time. I think about all of those who have touched our lives; guiding us through this journey; like training wheels on a bicycle. You all know who you are and I thank each and every one of you for helping us get to where we are today. I have said it before and I will say it again, It takes a village and in our case it took an army to get here. As this new journey begins, we once again surround ourselves with more educators and specialists that have the ability to guide us down this ever changing road. I am hopeful and optimistic that the journey toward greatness will continue to unfold before our eyes. I will continue to be my children’s biggest advocate because if I don’t who will?
Until Next time………………
Thursday, August 9, 2012
Baby Steps To Success
Through the eyes of my children I have learned that the best way to get through a day, a week, a month or sometimes even a minute is by taking "baby steps". Yesterday was one of the best and toughest days I have ever gone through. As I quickly approach 40, I realize just how much I have learned from my mistakes, from the mistakes of those around me and from the courage and curiosity of my two amazing little boys. I have also learned so much from the courage of my husband. So many people say to me, " you and your husband have been through more in 5 years than most couples go through in a lifetime" That may be true, but each thing that life throws our way makes us a stronger and better as a couple, parents and friends.
The inspiration behind tonight's post is my amazing 5.5 year old. 3 years ago, when we began our journey to find out what was causing all of our sons behaviors, sensory delays, transitional delays, social/emotional delays and speech delays; I never thought yesterday would have been possible.
Yesterday was Kindergarten testing for my big guy and he hit a home run, scoring 100% on reading and comprehension, 97% on site words and 94% on letter recognition and proper sounds of each letter.
If you don't know me or my family, I can hear the comments now, "Geeze, these parents are perfectionists, this poor child is being pushed too hard, why is it that important to blog about this when he is only in kindergarten". If this were any typical child I would agree with those skeptics, but this is no typical child and this is no typical situation. Our son loves to learn. He is so intrigued by what words mean, how to pronounce words and just above life in general.
Our son didn't speak until he was almost 3. At age 2.5, the teachers couldn't figure out why he was having meltdowns whenever asked to transition from one task to another. At age 4 his pre-school teacher required us to obtain an aid (with our own money) in order for him to stay in her classroom; stating that he had too many issues to handle and that I needed to get him more help than she could offer. Although I didn't agree with her decision; looking back; I am so grateful that she was unable to stand up to the challenge of my child, because the behavioral aid that was referred to us did wonders for our son. He gave him all of the tools necessary to grow socially and emotionally; taught him ways to process faster, to filter out the unnecessary things around him so that he could focus without going into sensory overload and laid the foundation for all of the coping skills he now uses to be able to self regulate in stressful, anxious or unfamiliar situations. Without this foundation, yesterday would have been impossible.
At age 4.5 he was given an IEP and an ABA rep and the progress continued. The foundation that had now settled in his little mind, gave way to a whole new world, a whole new attitude and a brand new start for our guy. The teachers at his last preschool and at ABA services NEVER once looked at him as though he was different; instead they took the challenges and turned them into to opportunities to teach him additional coping skills. They set him up for "small failures in a safe environment" Allowing him to figure out how to work himself through tough situations, transition with the rest of the class without melting down for an hour because he was still thinking about and processing what had happened hours earlier and just figure out who he was and become comfortable in his own skin. Not only did they accomplish all of this; they exceeded every single expectation that my husband and I every imagined, prayed and wished for our big guy.
The kid that walked into the elementary school yesterday could never have come to exist without the army of people who surrounded us over the last 3 years. When his new Kindergarten teacher asked him if he was nervous about starting Kindergarten in a few weeks, he said he was not nervous, just excited. The teacher came out of the testing room, sat down with me to go over the reports and brought tears to my eyes as she told me how he not only answered her questions regarding the stories he had read to and with her; he was able to summarize what was said in minutes. This brought tears to my eyes because less than 1.5 years ago, that would have taken hours if not days to take place. His processing abilities were so delayed that they would trigger frustrations and meltdowns. Yesterday all the delay did was trigger him to look off for a few moments at a time, in deep thought, as he processed and recapped what he had heard/read just minutes before in the story. Tears of joy and a sense of accomplishment were alive in me at that moment.
The teacher went on to ask me what his IEP diagnosis was and responded with, wow, I would never have known. She said she did see some of the processing delay, fixation on topics and a little bit of rigidity, but the way he had learned to cope with it was magnificent. Finally, she smiled and said, whatever you did and whoever helped you did a fantastic job preparing him for Elementary school. Don't worry, he is so ready for school.
I hope this post inspires others to let down their pride and do what is best for their child's well being. I also hope that it shows the struggles and successes that it takes to get to where we are today. It is not an easy road, definitely a road less traveled, but a road worth traveling, none the less.
Monday, August 6, 2012
Change - will you embrace it or fight it?
I realized it has been 3 months since my last post. I didn't think it had been that long since the last time I sat down to type out my thoughts. So much has happened in the last few months. The one thing that continues to go well is my oldest's ability to go with the flow, embrace change and deal with what life continues to throw his way.
2 years ago my oldest needed at least an hour of "priming" before going anywhere and if he didn't get the days "preview or change of events as they were going to unfold" his tantrums would be so bad that we couldn't leave the house. Today we have a child who may "meltdown" for 15-20 minutes max when things don't go his way or he doesn't know what is happening next. While his "tantrums" may still be much more intense than a typical 5.5 year old, they are quite manageable and that is the best we could have hoped for when it comes to a child with ASD.
I couldn't be more proud of my boys. My youngest learns and grows everyday by watching his big brother. Instead of worrying about what mood my oldest will be in and how many red choices he will make in one day (those are bad choices)I sit back and watch him help his brother; watch what we do with him and try to use some of the words we use to teach the little one right from wrong. He's making up for lost time when it comes to being a kid.
What do I mean? Well we spent years 2-5 in early intervention services; much of it paid for out of pocket. Surrounding ourselves with an army of experts, we were able to give our oldest the tools to process faster, deal with change, understand how to be flexible and learn how to properly interact in a social setting. Not only was he able to learn all of this and be able to put it into practice; his little brother was able to benefit from the early intervention (ABA) services provided to our oldest. Since Sharing and Flexibility are big parts of helping a child with ASD it was great to have his little brother there to help him figure out how to work through some of these programs.
Without all of this help, I am certain we would not be where we are today. Over the last 6 weeks, we have moved our kids cross country, had our nanny of 3 years go back to CA with less than a weeks notice and had a new sitter start with us. Luckily, will all of this change, we had Babushka and Uncle George here to cushion things quite a bit. In the last 3 weeks, on at least 2 occasions, my oldest has thanked me for bringing him back to MD. He said mom, "I am really happy with you" When I asked him why, he said because you brought me back to MD. I really like it here. He had a grin from ear to ear on each occasion. Any question I had about moving this amazing kid cross country again in less than 4 years was wiped away by that comment.
I titled this blog post, Change - will you embrace it or fight it, because I truly believe change is a choice. Everyone has the ability to change, the choice is yours, the decision you make today will affect your life and the lives around you tomorrow.
I know this to be true on so many levels. I choose unconditional love for my boys when it is not the way I was brought up; I choose to continue asking for guidance and support when I don't know how to help my boys; instead of being too proud, I let down my pride and know that my kids will truly benefit in the end from my vulnerability. I am confident that teaching kids right from wrong, supporting their decisions/thoughts/feelings (even if you may not agree with them) setting boundaries, offering unconditional love and to how fight for what they believe is right; will help mold my boys into well rounded, successful and happy adults.
Any time I want to give up; feel like the things I have changed in my life to better my chances of my happiness and that of my boys were not worth it; I look at their faces, smile and know that CHANGE is good, CHANGE is inevitable and CHANGE = GROWTH
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