Utter Autism

December 10, 2015

Busing

Adrian started a special preschool program when he was first diagnosed at 2.5 years of age.  I’d made the decision to be a full time mom so there was no question that I’d be driving Adrian to and from his preschool each day.

The girls were about 6 months old and handled the 30 minute ride well.  I’d run errands after morning drop off, head home and then leave the house a bit early in the afternoon so the girls could get a full nap in the car around pick up time. When we moved, the ride to his new school was still about the same 30 minutes so we kept our routine.  

Then he moved to his kindergarten classroom at 5 years old.  The girls had just turned 4 so when busing was offered I figured we’d give it a go.  The worst case scenario if it didn’t work out was that we’d all have to go back to our familiar routine.

From the start there were serious problems.  Within those first few weeks the bus folks were reporting tantrums, hitting and kicking windows, hitting and kicking and pinching other people on the bus, taking his shoes off and sometimes even throwing them at the driver.

I met with the bus driver, aide and bus company management and tried to give suggestions.  They tried playing his music for him, tried taking his shoes off as he entered the bus (which was really just a minivan), tried having the aide sit in various places and interact in various ways.  Things would get better for a bit but there was no way to make everything go smoothly all the time.  After several months of trying I did eventually go back to driving Adrian myself.

We’d give bus rides another go many years later with equally mixed results.  The ride to school was impossible but the ride home from school could be managed… most of the time.  There’d still be occasions when I’d get a phone call and have to run to the school to pick him up myself.

Adrian’s difficulty on the bus was one of the points we made to the school district to support his going to a residential school.  They were pushing for him to ride an hour on a bus to and an hour home from the school every day instead.  Yeah, right!

I’m really grateful that through Adrian’s schooling years I was in a position where I always had the option of driving him to school myself.  And I’m really glad that our days of having to even think about a bus are over!  😀

November 8, 2015

Pinching

Reading back through the notebook we used to communicate with Adrian’s teacher and therapists from his kindergarten year I found a familiar problem discussed.  Pinching.  This had been a problematic behavior for Adrian as far back as I can remember.  It probably started when he was a toddler, when most kids move into verbal communication methods.  Without being able to speak, he relied on non-verbal methods to express himself.  Pinching was one of these.

The new kindergarten teacher asked me if there was anything specific we did to deal with his pinching. I explained to her that in the past we’d tried time-outs and other discipline measures without success.  Reminding him to ‘touch nice’ seemed to work when he was using it as a means of getting your attention but not when he seemed to do it out a sensory or compulsory need.  

For many years I had black and blue marks up and down my arms.  Adrian’s been known to pinch complete strangers in crowded places. I was constantly on alert to protect myself and others from his fingers.

Today Adrian still pinches himself and others.  But, in general, I think he pinches less now than he did in years past.  Part of that is due to being with people that ‘get’ him and are able to respond well to his needs and wants.  Part is probably just maturity and more reliance on other communication methods.  Part might be the medications he takes now too.
While I wish I had some clever solution to offer to parents who are going through the worst of it now, I don’t.  Best I can do is give hope that it can get better.  It did for us.

October 3, 2014

Old Notebooks : The Gluten Free Diet

April 24, 2000

We started Adrian on the GFCF diet this past week.  This, of course, means a lot of restrictions on foods so I’ll be sending both snack and lunch foods from now on.

It was not an easy decision to try Adrian on a special diet.  First, there’s the skepticism to get by.   As a young parent, it’s hard to go against convention.  Especially when you’re not sure what’s the right thing to do. There were other potential ‘treatments’ we passed by because they were a bigger step than we were prepared to make at that point.

The diet, on the other hand, seemed fairly harmless.  It wasn’t going to hurt Adrian or the bank account to give it a try and see what happened. So we committed to a one month trial removing all gluten and casein from his diet.

Back in those days that was not an easy feat.  Today I walk in my grocery store and there’s shelves full of gluten free products.  Back then, to find anything gluten free at all, you had to shop specialty health food stores and even there the selection wasn’t great.  It was a lot of work to prepare the food.  And for a kid who didn’t take easily to new foods well, there were other challenges besides.

The results?  Well what we saw in that first month was enough to convince us that it didn’t hurt to stay on the diet.  Some of what we saw improve:

  • He waved ‘hi’ and ‘bye’ for the first time ever
  • He was playing with toys appropriately more than ever before
  • He played with a toy with a friend for the first time
  • He was ‘increasingly willing to tolerate various sensory and movement experiences as well as participate in activities chosen by the therapist’
  • His eye contact improve both at home and at school with therapists and teachers each mentioning it to us separately
  • He did all the motions to songs without hand over hand
  • He improved his ability to follow directions
  • He seemed to be more aware of his environment

And that was all in the first month after starting the diet.  It was a lot of improvement over a short period of time.  He’d been in school a full year and we hadn’t seen that much so fast in all that time.

Could it have just been coincidental? Yup.  We’re talking about a kid who was getting full day preschool including multiple therapies who had 2 sisters at home who were themselves going through many of these same developmental milestones.  Maybe he was just ready for all that and it would have happened diet or no.

But as the diet wasn’t causing any great hardship on Adrian and we were seeing such good things… well, why not stay on it?

In the following month we saw more great strides.

  • Participation in circle time including clapping at the appropriate time
  • Playing with a wider variety of toys in more appropriate ways
  • He gave his sisters hugs and responded to their requests for hugs from him
  • He gave my husband and I kisses for the first time ever (he was 3.5 years old)
  • Babbling – something he’d not done since he was about 6 months old
  • Attempts to say words – closer than ever to talking with approximations of the word book and up
  • Use of his first sign language
  • Started  paying attention to family pets for the first time ever
  • Attempted to sing a complete song by himself with motions and ‘singing’
  • Played ‘Ring around the Rosie’ with his sisters – unprompted
  • Blowing kisses for the first time ever
  • Attempts to say more words – out, all done, eat, etc.

Again, this is all within 2 months of starting the diet.  Much, much more progress than we’d ever seen before in such a short time.  It was encouraging and not knowing if it was the diet or something else, we decided to just continue it indefinitely.

September 24, 2014

Old Notebooks : The Beginning

I recently cleaned out the file cabinets and pulled out the collection of notebooks used to communicate with Adrian’s classrooms through the years.  I can’t really think of a good reason to keep them around at this point.  It’s not terribly practical or helpful to know what the problem du jour was back in 1999.

However, before I part with them forever, I plan to read through them one last time. It seems like a good idea to record some of highlights here while I do that.  I’d like to keep some of the memories of what life was like back then.  And perhaps some who read these will find it helpful to them as they go through similar things.  If nothing else, they can know it’s all survivable.  😀

Adrian was diagnosed with autism in the spring of 1999 when he was just over 2 years old.  He immediately started attending a special ed preschool where he received speech and occupational therapies.  My twin daughters at the time were 6 months old.  Yes, I really had my hands full!

The first thing I saw in the notebook from that first year was the fact that they used PECS with Adrian from that first day.  I sent in pictures for chicken nuggets, yogurt and family members.  He picked up the use of them quickly.  Being reminded of how successful he was with these even back then makes me feel more than ever that PECS really are a old and babyish method to be using with a grown man.  Thankfully, in recent years most of the staff working with him have moved away from using them.

November 1999 saw me asking staff at the school questions like…

Bee has picked up Adrian’s humming while eating habit.  Ahhhh!  How do we stop this insanity?

And

Adrian has been taking his clothes and diaper off lately.  Do you have any suggestions about how to stop this? (The duct tape only slows him down)

LOL  Oh, to be able to laugh about these things today!

Bee saw her older brother loudly humming while he ate and thought it was the way eating was done.  If I recall, we had to constantly interrupt her copycat behavior until she finally stopped.  Simply exhausting for us and very confusing for her!

And duct tape on the diaper!  I’d completely forgotten about that one.  How many parents keep duct tape in the diaper caddy next to the diaper cream and wipes?!  Oh but we did.  We had to.

The teacher wrote back that onsies or overalls might slow him down… but I had to tell her that we’d already tried both of those.  He was able to take the diaper off from underneath these types of clothing, leaving the clothing in tact so you didn’t know he wasn’t wearing his diaper until he’d peed his pants.  Thus, the duct tape solution.

The stripping behavior has stayed with us for many years.  I recall once when Adrian was 6 and still wearing diapers that he took the diaper off and shredded it.  Ever wonder what the insides of those diapers look like?  I, unfortunately, can tell you. I walked into his room and there was yellow ‘snow’ everywhere.  We finally got him toilet trained shortly after that incident.

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