Our son has Asperger's Syndrome.
At the most recent event for a program called YouthCare my wife and I spoke publicly about our son’s battle with Asperger’s Syndrome, for the first time. Here is the text of my wife’s speech the other night.
I have given many speeches over the years. This is one is by far the hardest. It is one thing to speak from the heart about your own experiences and another to speak from the heart about one of your children.
When our third child was diagnosed with Aspergers Syndrome almost two years ago all I can say is that my heart was aching. A child that I had raised to that point like his siblings, I couldn’t understand how he could be so different. I was in the doctors office when I heard the words ” On the spectrum of Autism” Aspergers.
For one brief second the puzzles pieces made sense and there was relief. What followed was such a sense of loss, pain and guilt it’s hard to describe.
I remember for days thinking to myself “just write down” what I was feeling. The emotions were so strong that I became numb. I struggled so hard as a parent to reach Grant and I was now sure that I would never know how to communicate with him.
The school year was just beginning and I went in for his IUP meeting. I was so overwhelmed I cried the entire time. I didn’t know how to handle Grant and I was looking for anyone to tell me “Hey, no need to worry, we can help”.
I starting sitting up nights, scouring the internet, downloading anything I could find on Aspbergers. Digesting in small bits as it was all so overwhelming.
Some people read everything they can get their hands on, all I wanted was the comic book version. Which by the way I have never found.
That fall of 2004 we went on to win the World Series and I just tried to keep distracted. I really wanted help but honestly I just wasn’t ready for it. I tried to watch Grant and see what I could do . I listened to the teachers and administrators give me tips and techniques to help Grant at school.
It wasn’t till after Christmas that year when I decided to take the schools advice and reach out for help. I was ready to accept this different life and the new adventures it would bring to us. I spoke to other parents who were always eager to share problem solving that worked for them.
One name that kept coming up in conversations was this wonderful camp called Youth Care.
We tried summer camp before his diagnosis and every day I would have a full report from my daughter on what Grant had done to make the councilors mad. I was mortified and humiliated that he just couldn’t follow there rules. I knew that I couldn’t go through another summer like that. So I made the call to YOUTH CARE. Grant and I went to the interview meeting.
I have to tell you that I was so nervous that he would act normal and they wouldn’t accept him. Needless to say it took 30 seconds for them to agreed he was a fit. As he walked in he touched every single object in the room, never looked her in the eye, and couldn’t answer any questions due to being so distracted in a new room with so many new shiny things to look at, and touch! Hooray we were in.
I really had no idea what YOUTH CARE had to offer as I had heard that kids and parents learn so many coping and life skills and this camp was second to none for kids like Grant.
I felt relief and empowered that I was making the first good decision for him.
The day of camp orientation arrived. I listened as he met his councilors and watched as he interacted with the other kids in his group. They explained to him the great things that he would be doing that summer and he was excited. He counted down the “Sleeps” until camp would start.
The first day arrived. He was up early and checking to make sure he had everything he needed. I pulled into the line and watched as each kid was greeted by his councilor.
When our turn came Grant jumped out of the car almost forgetting to give me a kiss, which he never forgets. The camp councilors were so warm and affectionate in greeting each child that morning, this was truly going to be a place Grant would be accepted, and welcomed.
He walked away and I started home. I drove out of the campground and without warning tears were flowing down my face. For the first time since this journey began I was crying tears of joy. Grant was safe and most of all wanted. He would be surrounded by people who would watch out for him, understand him and be patient with him.
As a mother that is all I wanted. I learned strategies that would help both Grant and our family. I was open to suggestions and eager to try the new things that we learned would work so well for Grant. Grant had a wonderful summer. A super summer camp experience.
Curt and I are so grateful that Youth Care exists and for all the wonderful people that work so hard to help our children. What we hope to do by sharing our family story is to help even more families who do not have funds to this amazing opportunity to have that chance.
Take it from two parents who are walking this journey with our son. If you have the means to give a child and his family a chance it is the biggest return on your investment that you will ever make.
Thank you and God Bless
Shonda and I are truly grateful to Scott McLeod the camp director and want anyone affected by this to reach out to the camp and any of the other services provided to see if there is help for you or your children. This is a daily battle that will never end. Much like most everything else I look at this in only one way.
Life often times gives us ‘choices’ when it really doesn’t. Our son has Aspergers, there is nothing we can do about that other than turn over every leaf, in trying to make sure we as parents provide every possible outlet and resource to him, and to us as parents, to make the world a place Grant can thrive and succeed in. Our son is brilliantly smart (as many children with Aspergers are) and way ahead of many of his peers in certain academic areas, but there are social issues and to many people those have far more potential to be harmful than anything else in a young childs life.
This is the opposite of a ‘why us’ or ‘poor us’ story, this is the first chapter of a story that will see us take on a charitable cause, and ask each and every one of you for help (whether that is time or money, I don’t care, both are needed) as we move down this path in our lives.
This city has never shied from helping Shonda and I in every charitable endeavor we’ve taken on and we are forever grateful to all of you for everything you’ve done.
Please don’t hesitate to contact me through this blog if you are looking for help, or offering it.
Curt and Shonda Schilling