Posts
Friday, June 18, 2010
Update... he's doing great
So nervous...and PLEASE HELP!
Rumor has it Tyler did great yesterday with the ADOS at UMACC. We love to help them out and allow Tyler to be their test subject for training purposes. Big thanks to Grandpa for handling it for us as neither Steve or I could get out of work. Lots going on with both of us on the work front, creating lots of chaos in our scheduling and logistics.
Speaking of which, we are sad that we cannot attend the net workgroup session for autism insurance in Michigan. If anyone has the time and/or will be in the area, we need your help. It will be on Monday, June 21st from 12-2 pm. The workgroup will be held at the Detroit Medical Center's Children's Hospital Auditorium. A link to a map and parking instructions can be found here. Parking is available in the garage for $2.50 or you can choose to valet park (also, for a fee).
The auditorium seats 250 people- we need it packed with standing room only! Please wear your AIM shirts to show your support. If you do not have one, they can be purchased by going to Autism-Ask or a limited quantity will be available for only $5 on Monday. Everyone is welcome, so please plan to be there!!
If you cannot attend...write your local newspaper editors: Here's the info you need:
Letters to the Editor
Please write a Letter to the Editor of your local newspaper this week, ASAP! We are trying to get as much coverage of this issue as we can! Listed below are some key themes and points, as suggested by Dave Meador, who is going to be one of the speakers on Monday. Feel free to use these key talking points in your letter or create your own, with the theme being that it is time for the Senate leadership to take action NOW!
Key points:
Autism Insurance Reform in Michigan equals at least $14 billion more in savings for Michigan, a state in desperate need of reform. This is a conservative estimate.Michigan's 15,000 children with autism do not have access to the medically proven therapies that can move at least half of them to normal function. While the cause and cure of autism are not known, these proven therapies are not covered by Michigan’s insurance companies. Of the savings, $200,000 per child would go to the schools over their school life.That is why 22 states have rapidly passed this legislation and another 21 are on their way. Autism reform legislation equals at least $14 billion in savings to Michigan, $3 billion of that to the schools. It allows children a chance at a productive life and new jobs for health care professionals. Reform doesn't get much better.We encourage the Michigan Senate to continue to provide leadership and move on this legislation before the summer recess.Goal:Most Michigan Insurance Policies exclude coverage for medically proven therapies for children with autism. We are seeking to become the 23th State to pass insurance reform that would provide therapies including, but not limited to Therapeutic evaluations and interventions, Speech Therapy, Occupational Therapy, Physical Therapy, Comprehensive Behavioral Treatment for Young Children - Intensive early intervention, Applied Behavior Analysis (ABA), Psychological Services, Psychiatric Services The case for change is has been made and the time for action is NOW.
I am tearing up now thinking about the struggles our family faces, the dynamics of it all, and how it affects so many areas of our lives that you couldn't even imagine. Insurance coverage for just speech alone would free up $400 a month which we could use to pay for music therapy for example or use to pay Tyler's supplements which we typically end up putting on a credit card or can be used for a family vacation we are trying to plan someday so we can be a normal family on occasion. Not to mention how much it will help Tyler.. we want more services for him but we are doing all we can do now. You saw yesterday's post..the sky is the limit given the right resources and not providing coverage is discrimination. It's SO HARD on families. TACA reported 3 deaths this past week of parents who actually murdered their child who had autism. how horrific is that....these parents need more support and affordable services. So please do what you can do. xoxoxooxoxoxoxoo
Thursday, June 17, 2010
6/17/10 - Last Day of School
So thought it would be a good time to summarize where he stands on his goals from his IEP:
Self Help Skills: Tyler rcontinues to struggle with self care activities like takign off his coat, putting away his backpack, going potty, washing hands, etc. He can do these things but it takes an adult to support him thruogh each task or he'll just wander away uninterested. I'm hoping to work on more of these things this summer.
Fine Motor Skills: Tyler is still behind on his fine motor skills including scribbling, stacking, opening lids, etc.
Speech/Language: As we all know, Ty can't talk and has been struggling with signs for the pst 9 months or so. He scrolls and it's hard to distinguish some of his signs unless you have an idea of what he's getting at. He does however, follow transitional verbal directions/prompts for actvities at school without pictures. He's been donig this at home for a while, but school was using picturs as a support to help him transition from one activity to another which used to really be hard for TYler. He has a really good core vocabulary that he comprehends.
Play/Gross Motor/Imitation: The goal was for Tyler to imiated 20 gross motor movements and currently he can do 18 of them. He struggles with a thumb's up and touching his head. He struggles with social interactions but has improved. HIs goal is to have 3 - 5 turns per setting.
Speech/Language: Tyler has significant oral -motor apraxia and is workign on skills to imitate differentiated vowel sounds and counstantns. He's producing the "b" sound and the "A" sound givin a hand signal and at home also with a verbal prompt.
Ok that's a summary of where he is... how here is an awesome article from ABC World News..... made me tear up....I hope/dream/pray that Tyler's story will be similar.....
Autistic Salutatorian Delivers High School Graduation Speech
Rhode Island High Schooler Leads Class Despite Speech Struggle
By BRADLEY BLACKBURN
June 16, 2010—
Eric Duquette is the salutatorian of his high school, an honor student, a musician, and he has autism.
The 18-year-old Duquette, who couldn't say a word until age five, gave the commencement speech at his high school graduation ceremony Tuesday night in Smithfield, Rhode Island.
"My parents were told I would most likely end up in an institution," said Duquette. "I stand before you accepted into every institution of higher learning I applied to."
He stood at the podium wearing a green cap and gown and a big grin on his face. His speech, funny and touching, was met with enthusiastic applause from his peers.
Watch 'World News' for more on Eric Duquette's story tonight on your ABC station.
Duquette graduated from Smithfield High School with the second-highest grade point average in a class of just under 200 students. He will attend Rhode Island College in the fall, with plans to study biology and eventually become a pharmacist.
"Tonight is all about reflection and looking forward to the journeys that lie ahead of us," he said.
It's been quite a journey for Eric. His success in high school came after years of work and slow progress. Diagnosed with autism when he was a young child, Duquette struggled with communication and language.
Mother's Dedication Gives Gift of Speech
His mother, Judith Duquette, began working with him early to break down his communication barrier with speech therapy. In addition to professional therapy, mother taught son using sign language and cards with pictures and symbols.
Despite his early struggles with speech, today he speaks both English and Spanish. He's a member of the Spanish National Honor Society and placed 93rd in the nation on the Spanish V exam.
Judy Duquette combs her son Eric's hair before he delivers his graduation speech.Photo credit: The Valley Breeze
"Daniel Webster wrote that 'if my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest,'" Duquette said at the podium. "For me, learning to communicate did mean regaining all the rest."
Salutatorian with Autism Gives High School Graduation Speech
Listing the scholarships and college acceptances he's received, Duquette said that he hoped to inspire his fellow students.
"I tell you this so you do not allow yourself or others to be defined by your limitations but rather abilities. Never underestimate yourself," he said.
Eric Duquette, 18, receives his diploma during the Smithfield High School graduation ceremony on June 15, 2010.Photo credit: Lee Walsche/Lifetouch National School Studios
After the ceremony, Duquette told ABC News he was proud of his performance.
"I think I perfectly encompassed the compassion and spirit of Smithfield High School through each and every single one of my words," he said.
One last link.. this is a link to a blog of a mother with an autistic boy and this particular story discussed how an IPAD changed her son's life. I cannot wait to get Tyler one, he loves the one at speech...some guardian angels have ordered one for him and it's on its way :)
http://www.blogher.com/ipad-nearmiracle-my-son-autism
On the home front.. life has been rough lately. Lots of stress with death's, illness, work schedules, lay offs, etc. We are actively planning to have a simpler life come early next fall that will meet the needs of everyone and hopefully make us all a big happy family:)
xoxoxoxo
Tuesday, June 8, 2010
06/08/10
The boys are having a great time on their new water slide/inflatable. We have such a hard time getting them to enjoy the same activity during the summer months. We usually end up taking the boys to a community pool or sprinklers or whatever during the weekends so that they can get out and have some fun and enjoy the health and good weather that summer brings and so we can too! they can be expensive, and time consuming once we pack up food for Tyler, activities to keep him engaged/sitting while we eat whever we are, and then all the normal kid stuff, diapers, snacks, drinks, towels, sunscreen, etc. We usually end up spending as much time traveling/packing as we do enjoying whatever activity we had to pay for. So this summer, we decided we'd like to spend more time enjoying life as a family/relaxing and stress free. So we got the boys this inflatable. It was a hard decision honestly but I've been feeling a lot of guilt lately about Ben, actually both boys. Man I wonder if that guilt ever goes away? Ben has been delayed in many areas and it's becoming quite apparent now that he's in a bigger preschool. His socials skills and self care skills are behind. A product of us having twins and one with autism for sure, none the less he's behind and it's hard on me, each time something happens I just feel so guilty. I know I make choices that benefit Tyler more than Ben and do so quite often. I hate that it has to be that way. Anyway, this purchase was a very non-autism gift. Ben deserves it... took a big hit that week in terms of figuring out how to pay bills but it was all worth it, look at their faces! It conveniently stores away in a small box and inflates in about 20 seconds, add a hose and voila.. hours of playtime.
oh, here's a funny about Tyler. We got to school early the other day and there is a play area opposite the hall way of his set of classrooms, so we went down there to play. There was another dad and his son playing there. At one point the dad was standing with one leg sort of over the other and his foot propped up from the ground, so jut his toes on the ground and his foot sort of resting near his other leg upright. Tyler ran by, looked at his foot, turned around, went back and then bent down and grabbed his foot and pushed it down to be flat on the ground. I quickly recognized what he was doing and told the Dad so he wasn't wondering what the heck was going on. Jeez.. didn't he know that your feet are supposed to be flat on the ground! Ha ha..
Another cool thing about Ty.. many kids don't realize until they get older that Twinkle Twinkle Little Star follows the same tune as the ABC's song. Tyler knows this... hard to explain but he has a bear that sings the ABC song and he signs twinkle twinkle when it comes on for me to sing that instead of ABC's.
We are once again research one on one music therapy for the fall. I am so happy because I learned that they begin with the piano. So I'm really hoping we can figure out a way to make that happen. We do plan to free up some monthly cash flow so this should fit right into that plan.
We haven't yet found a new pediatrician, I'm struggling with the whole DAN Doctor and whether or not we really need one and also getting recommendations from friends. I don't know how we keep having to change. The plan was we'd move to a small town, have a small town doc, and they kids would have htem til they graduated high school. oh how things are different than my grand plan! Speaking of which.
The other day, the boys were in bed and Steve and I were in the living room and I said, I just want it to be a bad dream. I want to go to sleep tonight and wake up with the life we had wanted/dreamed of. I want our boys to go to school together, to play together, to talk! To go camping, to go to the store without packing 5,000 things to keep Tyler entertained. I want to be able to provide for the boys equally and be able to save money for college fund and us for emergencies. i want to visit family more often, I want our kids to play with our kids friends... I guess I got what I wanted. When I was pregnant and put on bed rest at 26 weeks, i remember just praying that the boys would stay in long enough to have a chance at life. I should be more thankful that I got what I wanted then, things could have been way worse of course and i do have two happy and for the most part healthy boys. I really am thankful for that. It's just that autism can be so draining sometimes and to know that there isn't really an end in sight, it's just a continual fight, sigh. I feel so guilty all the time that I'm not doing enough and I hate it. And to be honest I could do more and i know it, sometimes I just don't have the energy. Last night, dinner was going so well with Ben and he was so engaged with me (and had been a bad boy at school) that I really wanted to work with him.. so Tyler ate with his fingers and I didn't' stop him. We really want Tyler to begin to use his utensils more now that he's eating by himself. Steve was at our parent support group last night, it's hard for me to attend because Tyler is usually in bed by 6:45. Oh and then Ben and I had a sort of bathroom disaster last night and I was happy Tyler was in bed, he wouldn't have had the patience to deal with it. I can completely see how it would have gone if Tyler was awake and inadvertently I would have likely yelled at Ben who never seems to stop talking in the moment of crisis which in no Way was his fault or does he deserve it. And that's what i mean about a normal life...that's how it's supposed to be. Ben and I did great, he was patient, waiting for me to drain the tub, fix the problem, fill it back up so he could bath. No crying, whining, etc. Tyler would have been so upset, not understood what was happening and certainly not been able to wait the 5 or so minutes it took for me to take care of the problem and since it was close to bedtime, he likely would be screaming in my face until I put him to bed and skipped the bath. Ben would have been whining that Tyler was hurting his ears and then acting out for attention cause me calming Tyler would have been my activity at the moment. Ugh. For all of you who say it's like that when you have multiple kids, I don't believe you., or at least I can guarantee you it's not the same. I've seen my friends who have multiple kids and it's not even close to the same. You'd be amazed at how much just the concept of waiting can cause issues in our house. Or the fear I have that at any moment Tyler could walk out a door and I'd never see him again, he couldn't tell anyone who he was or what he was doing. Definitely my biggest fear. We were at friends recently and a babysitter was there because we were all going to a Detroit tigers game (I got free tickets thru work) and they have a huge house. Plan was for the sitter to watch our kids there, they have a 2 and a 5 year old girl nd then our boys. The house is 3 levels with numerous doors and I was not comfortable with Tyler having a run of hte house, so they had to move everything for their kids downstairs so that the sitter had one floor to watch the kids/doors. That's what i mean about it not being the same. One of their children was younger than ours but they had no worries at all about their kids taking off or being in far off places of the house without worrying to what they were doing. I can't imagine that for Tyler, we have gates, locks, etc. everywhere. Too many stories of kids with autism lost in the woods in the middle of winter or in the swamp or wherever. They don't understand to ask for help or they can't talk at all or they don't realize they are in danger.
There was a night a week or two ago we had friends over for dinner. Tyler hasn't seen them in a long time, i.e. no way could he remember them. The kids ate first as they were getting hungry and our food wasn't ready. After dinner, the adults were sitting at the table wrapping up and Tyler went up to the guy (pete) who's a big guy! And grabbed his hand so pete said, what's up dude. Then tyler pulled on him, so I said he wants you to go with him, so once Pete stood up, Tyler put his arms up, I said, he wants you to pick him up and take him to bed. Pete goes, really? I said, yup! So cute!!!! So he took him to bed and all was well. It was really so sweet.
As for the Assistive Technology Plan, it isn't finalized yet, still in the planning stages after our 2 hour mtg, but hope to wrap it up before the end of the school year for sure and have something in place moving forward for next year. I'll keep you posted.