Wednesday, April 11, 2012

Autism


April is Autism Awareness Month. I think I have mentioned it on the blog before, but I haven’t talked about it much because it’s my son’s story not mine. But I think other people could use the encouragement to perseverance of knowing Matt’s story. Our son Matthew is autistic. He was diagnosed when he was two years old. The doctor told my husband and I that our son might eventually learn to talk. Then, he handed us the card of a support group and told us to come back in six months.

The next years were hard. Our son didn’t sleep. Okay, he did sleep some—3 hours out of every 24. He sent the rest of the nights screaming. Cal and I took turns sleeping and rocking a child who tried to throw himself out of our arms. I discovered that if you miss enough sleep over enough days, you will have visual hallucinations.

The other kids learned to sleep through the screaming. They learned that Matt would be walking and fall over asleep. And where he fell, there he slept. And no one, on threat of death, would walk through the room where Matt was sleeping.

But as Matt’s occupational therapist once said, “Everything went right for Matthew.” He got an early diagnosis back when most autistic kids didn’t get a final diagnosis until they were five—and the brain was set. We started Matt on the Autism Diet, which had a huge impact on his communication abilities. Matt had an amazing occupational therapist who believed there was a way to “save” these kids, back when one no believed they could be helped. She explained why he banged his head against the wall, why he did rhythmic screaming, and why he’d flap his hands and spin and spin and spin. She taught him to put his hands out when he fell so he wouldn’t land on his face. He helped him strengthen the muscles in his mouth and tongue so he could talk clearly. And she taught us how to touch and comfort him without causing him pain.

And then, she gave all of us work to do. Cal, the kids, and I all worked with Matt—every waking hour. Jake’s job was to keep Matt from slipping into his own world, to force Matt to participate in the real world and interact with people. (If you know Jacob, you know that this is the perfect job for him—he’s, uh, tenacious.) The occupational therapist told us that Jacob was God’s gift to Matthew.

And God blessed everything we did, all the years of Matthew’s hard work and ours. Matt’s almost sixteen now. And he’s as “normal” as the rest of us. In fact, in what seems to me to be the ultimate irony, Matthew loves acting and last year played Puck in our local Shakespeare troupe's production of A Midsummer Night's Dream. Our goal was that Matt would be eccentric. And there aren’t many eccentricities he has left. Does he still have some things he struggles with? Yes. But so do I.

Yesterday, I read an article in USA Today about the latest autism research, particularly the work of Dr. Geraldine Dawson, whose research into the genetic links of autism we have been a part of. A new day is dawning for autistic people. They are amazing individuals with tremendous gifts. And I am so thankful that they now have a future that’s looking brighter.

11 comments:

  1. wow! thanks for sharing your family's story, and for such encouragement!

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  2. That is an amazing story. Thank you so much - it is so encouraging to think that we are learning more about this issue, and starting to find a way to understand and work with it instead of being afraid of it.

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  3. Beautiful; I so enjoyed reading this. Matt is such a delight and blessing to your family and the world God brought him into.

    It was interesting reading this. Though I was not intimately close with your family, I think I was there the day you and Cal came back from the doctor visit with the autism diagnosis - watching Luke, Ariel and Jacob at your house. And we knew your family in the few years following that. With no flattery intended, I'd like you to know what an encouragement and beautiful testament to God's grace you guys were in how you responded to that diagnosis. I still remember you saying, when I asked within only a year's time of learning of this life changing event how things were going for you in processing and adjusting, something along the lines of,"It will just mean we make some changes. I won't be able to homeschool my other children at the highest level I was originally hoping, but I guess God sees a benefit better than that for our family in allowing this with Matt." And though you and Cal were honest with the church about the very real difficulty, especially the sleep deprivation if I recall, the predominant thing that stands out to me reflecting out of you was patience and holding to God's faithfulness. As a relatively young believer in Christ at that time, it was an encouragement to see how other Christians respond to things that can be potentially devastating. Our God is faithful and able to hold us through, and bring redemption to many trials. Beauty for ashes. I can only surmise that the trials remaining with seemingly no redemption here are only waiting till the other side of heaven to be revealed in whole.

    It's so neat to see Matt (and your others!) grow through the years in the Christmas photo, and hearing about the misc. highlights in their lives. I love your 'goal of eccentricity' for Matt. Hopefully he holds on to as many eccentricities as possible. :)

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  4. Thank you for the story. I have to say that I do disagree about it being just Matt's story. It is your story too. I speak on a parent's panel down in Bloomington once a year. One question that is always asked is "How has autism changed your family?" My answer is always that my family is what God intended it to be and because of the Autism, so am I. Autism did not change my family, it changed me. I look forward to the day that my kids are in their teens. I hope that we have the success that you have had.

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  5. You are an amazing mom. Matt is lucky to have you watching over him. Thank you for this post and continuing to educate people on autism and how serious it is.

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  6. Inspiring!!!! Education and awareness about autism is so important. I didn't know that OT could make such a big difference, as well as catching it at a young age. Also I didn't realize how much it is linked to sensory input??? Bravo to you and your family for all pitching in to help Matt.

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  7. When I met Matt, back a couple years ago during the first time he performed in Midsummer Night's Dream, I can only presume he was past most of his therapy with autism; he seemed perfectly fine to me. He was a bit quiet, but he would hang out with the rest of us backstage as we waited for our scenes.

    I've gotten to know Matt more and more throughout the years, and I am happy to consider him one of my closest friends. I am sure you and Matthew can work through it all!

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  8. Thanks for sharing Matt's story. I'm happy to hear he's doing well.

    I work with a few students on the spectrum, and am now going to school for a Master's Degree in moderate disabilities, so I can better serve those kids.

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  9. Your story brought tears to my eyes. I've done volunteer work with a lot of special needs children, many of whom are autistic, and one of the most heartbreaking things about it for me was how many families crumble under the challenges. Instead of pulling together to share the burdens (and the joys), those parents gave up, split up, and their child's care and prognosis suffered as a result. I respect your family so much for dealing with the challenges of autism as a family and for helping Matt meet his potential. It wasn't "easy", I know, but you're all winners for having done it. God knew what He was doing when he placed Matt in your care.

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  10. Beautiful story! And Matt is lucky to have such a supporting, loving family.

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  11. Wonderful story, Connie! Your attitudes, I am certain, had everything to do with your son's success.

    I've seen both the toll autism takes, and the blessings, in my brother's family. My nephew was diagnosed on the spectrum around the age of six. The diagnosis was a long time coming.

    I'm so glad you shared your family's story here. It's more inspiring than you know, even to those of us on the outside.

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