David and Autism Awareness

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Where does the time go?  Oh – laundry, dishes, meal times, snacks, playgrounds, play dates, learning, kisses, hugs, church, grocery shopping, bedtimes, baths, fishing strange things out of the toilet, avoiding the lego obstacle course on the way down the hall – oh yeah.  It makes sense now.

Still, I intend to squeeze my writing back into these crazy life.  I miss the outlet of writing down my thoughts and chronicling the adventures of our family.  Homeschooling takes a lot of time and work, yes, but I also want to write about it and share my ideas as well as my frustrations.  Autism is a journey with twists and turns that keep us on our toes, and I am disappointed in myself that I haven’t taken the time to write about where we are in that journey lately.

April, National Autism Awareness Month, would have been an ideal time to put up a blog post detailing the latest in David’s progress and improvements.  As I do every April, I chose a favorite photo of David from my albums and tinted it blue for my profile pic on Facebook.  David came up behind me while I was posting the photo.  “Hey, why am I all blue?” he questioned me, giggling a little.  I explained that April was a very special month, and in particular, I liked to join the “Light It Up Blue!” campaign each year to bring more awareness to autism.  He was very quiet after that explanation.  I thought perhaps he was confused by the word awareness and hurried on to clarify that it meant a knowledge of and interest in a subject or cause.  He interrupted me to say in a very matter-of-fact manner, “Huh.  I always thought autism was spelled with an and it’s actually an au! Weird.”

And that’s my David for you, always thinking about things in his way and often seeming to completely miss the point.  Later, I will often discover, he has absorbed what I said and will discuss it with me then, but in the moment, he will frequently choose to talk about something else, often unrelated.  His one-track mind can prove very useful in school when he is excited about the topic at hand.  Then he will spend hours immersed in the subject and willingly do writing and art and all sorts of things that he normally resists.  However, if  I am trying to change the subject, it becomes quite difficult and sometimes impossible.  This is a problem when we are all tired of hearing about Mega Man, Ice Man, Fire Man, Stone Man, and all the other characters that I ought to know by heart by now.  I am attempting to teach him to be more aware of others around him and to allow them to talk about their interests too.  This is challenging for him.  Even if he remembers to give the other person a chance to speak, he is impatiently waiting for his turn so he can get back to talking about what he is interested in.  Recently, at our church home group, I saw him walk over to a group of junior high girls.  He jumped right into his current favorite topic with no preamble and no room for anyone else to talk.  I watched, resisting the urge to step in and help.  The girls were doing their best to look attentive, but as the minutes ticked by and he showed no signs of winding down, they got a little desperate.  Finally, one of the girls interrupted him. “Hey, David, I bet you can’t count all the bricks in that fireplace,” she challenged him.  It worked!  While he turned to look at the fireplace and start counting the bricks, the girls made their escape to another part of the house.  He was unfazed by the girls’ evasion techniques and went on to find another unsuspecting victim. 🙂  In instances like these, I want to shout “He’s autistic, okay? He has a hard time going off topic and can’t read social cues!”  But of course I can’t.  It’s not an excuse, and I certainly don’t want people to pity him.  He has to learn how to operate in these social situations.  And how many times have I, his very own mother, pulled the same trick to get out of talking about the same topic again??

David turned eight at the beginning of April, and he is now standing as tall as my shoulders.  He is quickly changing from little boy to growing young man. He is making tremendous strides in physical therapy and occupational therapy.  In September, he could not catch a ball with one hand and could barely throw it with any accuracy.  Now he does both with confidence.  His balance is better, and his fine motor skills are improving. There is still a lot of work to be done to build up his core strength, but we are working on that with various exercises each week. When we were doing Monday School with our homeschool co-op, I received great reports from his teachers.  He had one class – an art and literature class – that he particularly struggled in because he gets easily overwhelmed by projects and creative thinking.  His teacher was patient and helpful, and he learned a lot.  I asked him what he learned and he said, “Not to take an art class again.” Ha!

People love being with David and working with him.  He is charming and sweet and really does love being with adults.  I love having a conversation with him, trying to get a glimpse into that complicated head of his.  I cannot imagine him without autism – it is an important part of who he is. We will always be looking for ways to help him and encourage him along this journey.  I feel blessed that God saw fit to give him to us, and I do not take my duty and my privilege as his mom lightly.

(For more information on communication difficulties and difficulty reading social cues for autistic children, check out this helpful link at Autism Speaks.)

A New Season on the Spectrum

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It was the end of another busy Monday.  I was bustling about finishing up dinner dishes and hurrying the kids through their bedtime routines.  In the dining room, David was sprawled on a bench, focused on his new Lego minifigures.  I walked past him toward the laundry room, arms full of damp towels, when I paused by the bench.  He was shirtless, and as he leaned heavily on one side of the bench to support himself, I saw that his upper arms were thinner than his forearms.  Much thinner, in fact, and I thought it strange that I had never really noticed that before.  His back was hunched and even sunken in a little.  I reminded him to sit up straight, and he grudgingly raised his upper body while still leaning to the side for support.  I realized that his muscle tone was sadly lacking.  Although not uncommon for kids on the spectrum, I certainly did not want to wait any longer to help him build up those muscles, and in the process, build up his confidence in participating in activities.

When David had first been diagnosed with autism, he qualified for physical therapy and fine motor therapy with a specialist at a wonderful little place called Neurotherapeutics.  For a year, I took him in once a week to work with his therapist Sally Ann on balance, muscle control, texture sensitivities, and more.  She helped him gain confidence in his body and worked with him on eliminating the toe-running and the constant falling.  In short, it was amazing, and we were very disappointed when insurance failed to continue covering those therapy sessions.  Life went on, and now, three years later, I was seeing a need for more therapy and wasn’t sure how to go about getting insurance coverage again.

But God always works these things out, doesn’t He?  The very next day, David came down with what I was sure was strep throat.  I managed to get him in to see our pediatrician that same day to confirm it, and while we were there, I asked her to take a look at his muscle tone and give me a professional opinion on what I should do next.  She wasn’t particularly concerned with what she saw, but she wanted me to have some peace of mind.  I walked out of that doctor’s office with a prescription for strep throat meds and a referral to the physical therapy department.  I was told that it could be weeks and even months before they would call to make an appointment, but the next day we were able to get him in for an evaluation with a physical therapist.

At that appointment, as I watched him uncertainly navigate the balance bar and struggle to toss the bean bags in the direction she instructed, I knew we were pursuing the right thing.  He needed this.  The therapist gave us lots of exercises to work on at home, with goals like “He will be able to successfully complete one sit-up at the next appointment” to guide us.  David was not thrilled at this new burst in physical activity.  He had always pulled the “give up right away” move in the past, but now he had to do bridges and “Supermans” and sit-ups.  I made him carry in the gallon of milk when I bought groceries and constantly challenged him to run wherever we were going.  By the third appointment with Suki, David started to look forward to therapy, and I was seeing some small changes already.  At that appointment, Suki had good news to share.  She had sent a referral to Neurotherapeutics, and we would be able to set up an evaluation with them soon.  Sure enough, Neurotherapeutics called to set up the evaluation appointment and to inform me that we already had insurance approval for twenty sessions with them, both physical therapy and fine motor therapy.

David goes to his evaluation there in a few days.  I am eager for him to get this help and thankful for the opportunity of it.  On Suki’s recommendation, we also got him into swimming classes to further strengthen his muscles.  All of this is a reminder to me that we have to be vigilant and stay on top of this whole autism thing.  When opportunities come up to help him, I want to be ready to take advantage.

And he’s convinced he’s going to be as strong as Ironman, so there’s that…