10/17/2011

Over the weekend I was reminded by a recent incident, one I'm thankful I did not witness. You see, Tyler often uses hand pulling as a way to get your attention or show you something. You see, he doesn't really have a way yet to say "come watch me play my piano" so he'll just pull your hand to follow him downstairs and then he'll sorta drop your hand whereever he wants you to sit/stay. He'll do the same thing when he wants to get rid of you... he'll walk you to a door or another area of the room and then sort of throw your hand in that direction and then run in the other direction and/or shut the door behind you, ha! I know I've mentioned it before but it's pretty rare that the boys interact, it's even more rare that Tyler would try to get Ben's attention. One day recently, Tyler wanted to show Ben something so he grabbed his hand to pull him where he wanted him. Ben got upset and bit Tyler! Oh my... for parents who want to reinforce positive interaction on any front between the two of them, this was sorta devastating. Yes, brothers fight, bite, kick, scream, whatever, but when you have two kids that never really interact you so want those rare occasions to go well. Tyler cried and I'm sure learned the lesson, do not grab Ben's hand and therefore don't request to play with Ben. Steve witnessed it and was so upset he was crying, and then when I came home, Ben wanted to come tell me what he had done. Ben was also upset and I was super upset when he told me. We were all just a mess. Ben knew what he had done was wrong and we explained again that Tyler can' t talk and sometimes grabbing your hand is his way of trying to show what he can't say. But on a good note, they were playing together on Saturday morning. We heard giggles in Tyler's room, Ben ran in to tell us they were playing together (as he knows how much we want them to have fun together), and for about 15 minutes this giggle fest went on. We pondered getting up, we knew that Tyler's pull up from bed time was now probably saturated and potentially falling off as they were jumping on the bed and wrestling but hearing giggles was worth the potential extra load of laundry.

My mom's family has an annual fall party. This was Tyler's first year attending. He's came so far and we felt he was ready. Most of that side of the family doesn't know Tyler, typically Steve and I divide and conquer, and one of us will stay back with Tyler and Ben does many of hte family visits with one parent. Tyler did great, was comfortable and had a good time the whole night. He didn't want to go inside. I on the other hand was exhausted from chasing him away from ponds and fire pits but all and all it was great for our whole family to be together.

Progress was made on the batmobile this weekend, we hope to get it completed before Halloween so Tyler is used to the new look and ready to go without issue on Halloween night. Ben is really excited for our theme this year and so are his parents!

For Preschool, Ben attended EMU Childrens Institute. They recently moved into the same building with the Autism Collaborative Center and they now share the space. There was a big ribbon cutting ceremony today to celebrate, in attendance were the EMU regents, board members, ACC staff, Childrens Institute Staff, children and speakers. I was asked to speak on behalf of parents as I was an ideal candidate since I've had a child involved with each organization. Anyway, I was extremely nervous, not only because I rarely do public speaking but because I was having difficulty reading my speech without crying. The opening video was the family of one of tyler's guardian angels. Two typical daughters and a boy with autism. It was such an impacting video that I had to look away as I was already tearing up. Uh oh... this isn't good, I'm already crying and haven't even spoken yet! So as suspected... I made it all the way to "glimpse's" and then had to take quite a long pause before moving forward. The rest of the speech was touch and go as I'd go in and out of crackling voice and tears. Sometimes hearing the truth from the mouth of someone experiencing it, is completely different than reading a statistic on a piece of paper. So yes, I cried, but there is a reason. it's been a tough tough 5 years and I'm so proud of both of my boys and where they are now that I can't stop the tears. So if you are interested, here is what I said:

Good morning, thank you for inviting me. I’d like to start by reading a letter I wrote to my son when he was two years old.

Tyler, thank you for the patience you have given us in the past year as you endured so many tests and evaluations to finally receive that official autism diagnosis. I know that it was a miserable time for you, but believe me, it was miserable for your daddy and me too. It was so painful to watch you struggle through all of those tests when I knew in my heart that you had autism. Everyone just wanted to keep giving you more evaluations, but I so badly wanted to help you. Although it may seem more like work than help, Mommy is doing everything she can to help you. Please know that it takes all of my might not to run to your side and give you the world without having to make you work for it, but I can't.

Thank you for your patience and understanding.It can't be easy to endure 30 hours a week of therapy, diets, tests, and vitamins. It seems every aspect of your life is spent "working" on something. Most two year olds don’t have to work on therapy type stuff during meals, bath time, diaper change or any of the other day-to-day activities. I hope you know that mommy and daddy try to make everything as fun as possible and would never do anything to intentionally hurt you. Mommy's heart breaks every day as I get glimpses of the Tyler that's trying so hard to come out of his shell and I so badly want to meet him. Thank you for your strength and endurance through it all.

Finally, thank you for readiness and eagerness to learn. Your success in the last few months is nothing less than amazing. I'll never forget when you said I love you, oh how I hope to hear that again one day. You have come so far, I look forward to the successes you'll have in the next year. You are truly an inspiration and you motivate me to want to help all of those affected by autism. Thank you for your determination and perseverance.

I want you to know that I will fight like I have never fought for anything in my life, to help you. I will not allow you become a statistic, I will not allow society to generate a path for you based on your diagnosis, and I will not allow anyone into our lives that does not have an open mind in regards to your potential. I accept you today just the same as I will accept you five years from now. I love you the same regardless of the future or the past. You are amazing and you deserve every opportunity. I will make sure you get it. I love you so much baby boy, I WILL NEVER GIVE UP!

About five and half years ago, I gave birth to twin boys. We immediately had concerns about one of our sons, Tyler. He had a distinct cry, rashy skin and feeding problems right away. We began suspecting autism at 3 months. At 6 months we started talking to the pediatrician about our concerns, 9 months we began testing to rule out genetic issues and therapy began at 13 months. For nearly 6 years, we’ve been helping Tyler battle autism while trying to ensure Ben, his twin, had as normal of a life as possible. There are 28 states in the US that mandate autism insurance, unfortunately Michigan isn’t one of them. Families spend in upwards of $50,000 a year battling autism. It takes its toll on an emotional, physical, and financial level but as a parent you hear that early intervention is the key and you do whatever necessary to help your child.

Michigan needs affordable treatment options where families come first. Three years ago, I was diving across the floor many times a day to protect my son from banging his head into the ground. My other son was beginning to show social delays, we were going into significant debt and my marriage was failing. Without the Children’s Institute, I’m not sure where Ben would be. We were delayed getting him into preschool as Tyler’s therapy, treatments and education were costing us so much we couldn’t afford preschool for Ben. By the time that we were able to get Ben into school, he was not succeeding and started to regress, I felt so guilty and incredibly sad. Thanks to the affordability of the children’s institute, we were able to get him into a classroom with amazing teachers and he began to blossom. We had begun to fear Ben may have Aspergers and those fears began to fade thanks to Mr. Gary and Miss Becky.

Tyler has also significantly improved. Through education, diets, therapy and biomedical intervention, and summer camps, Tyler now amazes his teachers and therapists on a daily basis. He can read many words, is beginning to write and uses an augmentative communication device to talk. The autism collaborative center provided an affordable means for Tyler to participate in group music therapy and then he won a scholarship for individual music therapy. Tyler continues to play his keyboard and drum set daily. We believe that one day he may be an amazing composer and we want to embrace this musical gift and potential future.

The ACC also provides a summer camp which Tyler has attended for the past 3 years. With multiple therapists and special education teachers on staff, Tyler has experienced staff working with him during the months he is not in school, so that his learning and social skill set can continue to grow.

I believe there is a reason I had twins, not only were we able to diagnose autism early but Ben is an amazing role model for Tyler. Ben talked in complete sentences very early and is a social butterfly now who loves to be around people. Studies show that children with autism can greatly benefit from interaction and modeling of typical peers. I’m lucky to have that in my house every day. Combining the ACC and the Children’s Institute into one building is a benefit on so many levels. Our autistic children have typical peers to look up to and model after. Our typical children can learn to be mentors but also learn tolerance and acceptance for those who may walk to a different beat. When the ratio is 1 to 70 boys who have autism in the US, it is our social responsibility to ensure that these kids can grow up in a safe nurturing environment with the best chance at an independent and happy future. You are helping by allowing these two groups to work together, hand in hand. Thank you for helping to make the world a better place for both of my sons. The ACC and the Children’s Center have had a significant positive impact on our family. Thank you for allowing me to share my story.