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Very, very fortunate

June 27, 2012

I received a phone call from a friend last week.  I didn’t answer it, though.  I let it go to voicemail.

I felt guilty.  I don’t normally do that.  If I get a phone call from just about anybody, I answer–especially if I or my phone identify the number.  In fact, most people have praised me for always being reachable via cell.  Just being polite, I guess.  But like a lot of parents right about now, I was up to my increasingly lengthy nose hairs in something kid-related.  It’s been a stressful, hectic past two months.  Sometimes I’m just not polite.

Alex has been on a cocktail of different medications for about 18 months now.  Some drugs added, some taken away.  Quantities tweaked ever so slightly.  All of this psychiatrist-prescribed pharmacological tinkering has resulted in a more calm, less reactive little boy of ours.  Most of the time.  Like life with autism in general, “always” doesn’t seem to exist.

For many months I have been dutifully logging Alex’s sleep cycles.  And with it, his different meds.  Since October, Alex’s in-home ABA (applied behavior analysis) therapists have been doing the same regarding his behaviors–self-injury, tantrums, non-compliance.  Everything is tallied.  What we have now, and continue to amass, is a reasonably clear record of how all these actions of his are tied together.  Patterns emerge.  Most importantly, we see how these psychotropic drugs might help or hinder him.

That’s good, too.  Because the very thought of giving any behavior-modifying drugs to a little child of 4 (now 5) was spooky to me.  My narrow, naïve brain felt that long, strange-sounding names like Resperdal, Clonidine and Gabapentin were for big people who had some big issues.

What sucks is our little Alex has some big issues.

His self-abuse increased markedly about 2 months ago.  He’d be very short-tempered, easily agitated.  His captivating smile and juicy giggle were absent.  This was noted everywhere he went–school, OT, at the playground and especially by his ABA therapists.  As fast as lightning, he would punch himself in the face.  Simply telling him “no” could easily set off a long, brutal-to-watch head banging session.  Thank God we always have his helmet nearby.  He was wearing it frequently lately.

Besides the obvious danger inherent in self-flagellation, the trouble with all of this self-injury is that it gets in the way of real “work”, real learning.  Alex needs to be taught how to do things, how to be patient, how his world that is likely very, very confusing to him works.  He does not need to spend any part of his day slamming his head into the wall because he cannot have a piece of candy.  We had to quell this behavior.

I think we found a reason.  In recollecting any changes in any part of Alex’s daily existence with his psychiatrist, I remembered that about two months ago I had been able to finally get Alex to ingest his meds mixed with food.  Up until this point, Alex would not tolerate any pill or elixir in his mouth.  It was almost as if he knew what they were and was saying, “Oh no you don’t!  I’m not swallowing that crap!”  So…for 16 of the past 18 months or so, the only way we could get Alex to swallow his medication was to crush the tablet and mix it into his infant (safe to swallow) toothpaste.  I noted there would always be some residue of his meds left over on his toothbrush.

I surmised that with him eating his entire dose of medicine, he was suddenly getting more than he had ever been getting in the past–too much, it seemed.  Which triggered his negative behaviors.  Alex’s psychiatrist agreed.  Too much of a good thing is a BAD thing.

So we tapered off with one of his meds.  Two weeks later, we stopped it altogether.  Alex had a decrease in self-injury almost immediately.  That positive, heartening trend continues.  And what I keep learning about just keeps growing.  That’s okay and fine and all.  But I certainly embody the words “bemused” and “chagrined”.

All this commotion over Alex has leached energy away from Kat and I.  Days are long.  Drew is out of school now for going on a month.  Alex joins him next week.  Work weeks of 40+ hours continue.  Kat pulls the same.  Emails don’t get read.  Messages don’t get returned.  And phone calls drop off to voicemail.

As I mentioned, I’m not typically like this.  I love people.  I love my friends.  I love talking with them, catching up.  Heck, I’ve even enjoyed this blog.  But with Alex showing signs of regressing, all of that takes a lonely back seat.  And every night, in addition to my prayers for Kat, Drew and Alex, I always pray for my friends.  And that I can keep being just that–friends.

There’s hope.  Alex is responding positively.  We are learning more about him.  And to my inability to chit-chat with my friends as I once did, or just return a phone call–my true friends get it.  They keep being my friends.  I am humbled and very, very fortunate.

From → Alex, Autism, Family Stuff

  1. Gina permalink

    Even tho I cannot even beging to imagine what you and Kat have to do everyday I can share that as a single mother who is both father and mother with very little help for the past 6 years is that you find out who your true friends are in the end and they understand. I know I have. One day at a time and the kids always come first and those who value your relationship will never even have to ponder or question your friendship or priorities.

  2. I just wanted to say that….I am in the same boat…..and it’s not easy. Many of friends have come and gone but I sentiment what Gina says above …”those who value your relationship will never have to ponder or question your friendship or priorities.” At times, Autism can be a very isolating issue. I am sending you love and hugs from afar.

  3. Julia permalink

    You are a good friend and your friends know that you have your priorities straight. You write eloquently about a difficult time. Thanks for writing and I will keep reading.

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