10/25/11

The end result was that the RunAThon was a big success, yeah! Tyler did 3.5 laps in the 10 minuts they were given. I will say though that I was a bit worried about him at the beginning. First of all it was a really cold day, secondly, the music outside was so loud it was hurting my ears so I can't imagine how it felt when our ASD kids had to stand right next to the speakers. Believe me they weren't handling it well. Then the kids were moved over to a lawn area for pictures, Ty had his picture taken with his Gen ed class. Again he was not so thrilled. I htink mostly he was just really confused about what was going on and as we know uncertainty is entirely upsetting to Ty. So then his aide had two kids she was watching over and they started walking to the starting point, Tyler seriously unhappy, kept running forward and trying to pull her hand down and gritting his teeth at her. He looked stressed and therefore I was stressed. I wanted to run to him and help him but wasn't sure of proper procedure and didn't want to make things worse. Finaly at the starting line I couldn't take it, he was not happy and neither was I. Steve and I intervened... and luckily to the pleasure of not only Tyler but his Aide, who now only had 1 ASD kid to try to get running. Once Steve and I jumped in and talked to Ty about what was going on he seemed better and then we ran with him (although we werne't dressed appropriately) and he was happy as could be. I am so happy we joined in the fun and supported him.

In general it's sorta tough. I HATE seeing Tyler upset knowing I may be able to make a situation better for him. On the same hand, I know that it's probably good for him to learn how to deal with uncomofrtable situations and to have to do something he doesn't paticular care for, I mean we all have to do things we don't like probably on a daily basis and we just have to deal with it. But watching your kid go through it is hard. I'm glad I'm not in the classroom every day so i don't have to see it all. Even when we were coming back into the classroom to get him settled so we could go back to work, we saw another kid being walked down the hallway with an aide on each side of him and they were sort of lifting him up and although his feet were moving, it was clear not much of his weight were on his feet as they were sort of pulling him back to the class. And although not hurting him and they were talking very calmly, I still struggled with it. Maybe cause I know who he was and care about him and his family but also because I would hate to see Tyler being pulled down the hallway like that. Again i don't know the situation or what was happening and I have full faith in the parapro's, it's just hard to see.

Tyler's getting into a bad habit of wanting to take everything to bed with him and literally piles it on his bed. The other day we found his night stand drawer on the bed, another day his rocking chair, a laundry basket. Basically anything in his view he wants to take to bed with him and then anything in his room he wants to have on his bed. Last night when it was time for Bed he grabbed his ipad (actually Carson's IPAD), the dynavox, two packs of diaper wipes and the bottle of hand sanitizer. I laughted my way up the stairs.

Ty and Carson apparently have the same IPAD and the same case (thanks CAROL!!!) and Tyler would up with Carson's yesterday and we are hoping Carson has his, LOL. Tyler loved Carson's IPAD. If we could have gotten it away from Ty we would have written down some of the apps. I'm definetly going ot need to talk to his mom. Steve is attending APP night at the ACC on Wednesday so maybe he'll run into her there and be able ot write down some of Carson's apps that Ty loved so much.

Oh and right now we have a new Dynavox which is much lighter and more modern than Ty's current version which broke. The speech therapist is going to try to make it so Tyler can use hte new version permanently :)Let's hope.

As you may know, Tyler is in gen ed 1 hour a week. I've attached a picture of Tyler in his gen ed class. This was the first time that he want to a station all on his own (no support of an aide) and participated in the activity for 10 - 15 minutes without support or prompting :) Awesome. Tyler's teacher is great as she email/texts me pictures/notes all the time about Ty's progress. There's another picture of him working on his fine motor skills. In this one, he's matching the number of pictures to the actual number. He was so proud of himself she said. When I asked if he got them right, she said "of course!" :) Yeah Ty.

On the home front, we want to try to tackle the potty training again. We feel we've tried everything out there and Tyler just lacks interest. Over the holidays we will be home more with Ty and hope to make some progress and hopefully one day be a completely diaper free home.

We have Tyler's parent teacher conference in a couple of weeks and are really looking forward to the feedback as it seems the news has been pretty good so far.

Ben's conference also went well. He came into preschool knowing what he should know and seems to be getting along quite well with the other kids, etc. The only issue he has (wait for it as it may shock you), is that he talks too much! LOL. Really???, our Ben, he's just so shy. hee hee. So they are working on appropriate times to talk and appropriate times to be quiet. Ben also has a girlfriend, Rachel. I'm attaching a picture her mom sent me today of the two of them at an orchard. Ben is so cute when it comes to Rachel.

Batmobile is done and we took Tyler for a test ride to make sure he was ok riding in it. Took him a minute to get in but then he was fine. he also loves the bat we hung up at the top of the "bat cave" he keeps wanting to play with it. Ben on the other hand says we don't have enough decorations and we need more. He's hard to impress.. I told him to get a job and he can go buy more decorations, ha!

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.

Happy October

Pardon my French, but Tyler is kickin' ass and taking names in Kindergarten! The boy is "wooing" his teachers and therapists this year, and frankly his parents too. His speech therapist is programming new words/pages onto his dynavox every 3 days and he learns them very quickly. He now loves his dynavox as much as he loves his ipad :) Grandma was trying to play with it one day and he pushed her hand away and pressed "DON'T" lol. He uses it to make requests like more pancakes, juice, etc. He also uses it to label objects. Ye's starting to tell us dates and what the weather is like. At school, he's now routinely using it to answer questions at circle time. He is writing (using his dyanavox so I guess I'd say putting together) 4 word sentences. He's understanding math concepts and syllables. He's enjoying interacting with the typical kids (he's in gen ed 1 hour a day) and showing them his dynavox skills. His fine motor is coming along as well, yesterday he wrote the number 13 all by himself. Teachers and therapists can't believe how smart he is and comment on how sweet and happy he is and he's a joy to work with.

The day that we found out he wrote a sentence we were just astonished, proud, humbled and appreciative. I think it first got a big "WOW'..... then just a relfection of where we all once were and where we are now. WOW, huge difference and so many people to thank. Our pediatrician in Tecumseh listened to our concerns when Ty was just an infant and sent us to a behavioral pediatrician as well as getting us in touch with early on services. The behavioral pediatrician then got us in touch with the UMACC where Tyler started the First Words Project and then the Early Social Interaction Study. By the way, UMACC Closes this month :( Dr. Lord has moved on to another organization. That's when we got our official diagnosis and started working with BCBA Carrie Miller, awesome! Not only did Carrie teach us how to better support Tyler in every day life, but also how ot get him to want to communicate with us, and how to play with him, get him to learn, etc. But she introduced me to the wonderful Amy Sanderson who pathed the way to a better education for Tyler. He started school at 30 months old, 5 days a week, 5 hours a day. Amy lead me to Kelly who got us into see Carol Fast, Ty's amazing private speech therapist. Carol, via her IPAD, showed us that Tyler knew how to read and told us to get moving on an assistive technology meeting. Some of Tyler's guradian angels:) got him an IPAD and we were able to use video to show the school leaders how capable Tyler was using electronics and how it speaks to him and how it could benefit his education. Kelly helped prep me for that meeting.... and voila.. introduction to Tyler's dynavox. The speech therpaist couldn't keep up at first with programming. We are firm believers that the dynavox and the ipad are the reasons that Tyler was able to move up to a higher functioning classroom setting.. which brings us to where we are today. Not sure where we'd be without all those people leading us down the right path but I'm more than thankful. Ty's doing awesome.

And Mr. Ben has a girlfriend :) Her name is Rachel, very cute little girl who is the daughter of one of my friends. A fellow runner, who has 3 children, the oldest boy has autism, a typical child and then cutie Rachel who is in Ben's class. We have his parent teacher conference next week so we'll here more about how he's doing at that time. We get a daily notebook sent home with Tyler so we are just kept more up to date as the classroom size is significantly smaller and it's easier to communicate with each parent than in Ben's class.

We are becoming good friends with people in our neighborhood and overall just creating a really great circle of support in our new home. We are very happy that we moved and hope our landlord will let us extend our lease. Other than that we are just gearing up for Halloween. Ben picked the theme, long ago, Batman. Ben is batman, Tyler is Robin, Steve is the joker, grandma is the cat woman, the babysitter is going to be batgirl and I'm Poison ivy. We are hoping to decorate the front porch like a batcave and are hoping to find a way to turn our radio flyer into the bat mobile with Robin at the steering wheel. Tyler doesn't trick or treat, in fact he's never even had candy, he doesn't like it. So he just rides in the wagon and plans on the ipad while Ben trick or treats. Will be interesting to see if we are judged at all, in past years, we get a few snide comments about Tyler having an IPAD and being so young. We live in a new neighborhood now and being that Ann Arbor is very open and understanding, I'm hoping that it's just accepted as it helps us all have fun on Halloween as a family.

Love to all,
xoxo