Utter Autism

August 25, 2011

Not Enough

Yesterday we went for our second swim with our new community center membership.  I’d gone out of my way to figure out the logistics ahead of time.  I scoped out the place while Adrian was back in school, asking lots of questions about the family changing room, disable accessible restrooms, the pool itself, floaties for my non-swimmer, etc.  

I went to purchase the membership by myself so I could focus on refining all those details a bit further.  So far, so good.  Everything looked perfect.

Our first swim went…, well…, swimmingly!  I checked in with the lifeguard about rules, learned where to find the floaties, figured out where the open swim section was.  It worked out great for everyone.  The 3 other kids swam in the shallow section while I took Adrian for laps.  We all had fun and it was great exercise.

Then we went back for our second swim.

And they gave me different rules.  They wanted me to be within arms length of the youngest at all times.  But he wasn’t allowed to go to the deep end where I’d been doing laps with Adrian.

I explained the situation and tried to offer other solutions…. Zee could wear a life vest instead of a floaty?  Could the two 13 year old girls watch him instead of me?  Nope.  Nothing.  The nice pool manager lady was kind enough to take it all the way to the top management but, citing insurance reasons, the answer still came back a big fat “NO.”

I thanked her for trying and said I understood – and I do – but I still walked away tearful.  It’s just the icing on the cake for a summer where Adrian’s autism has left us severely limited in what we can do. 

First there was the family wedding in Virginia.  My husband took the 3 kids and I stayed home with Adrian.  They had a wonderful week-long adventure and while I’m happy for that, I was left behind.  There was no other way.  We couldn’t have made the trip with Adrian.

The whole summer I ended up driving Adrian both to and from school.  The bus situation the school offered for summer school was more than he could have handled.  That’s 2 whole hours out of each day I spent doing nothing but driving back and forth. 

To make matters worse, the only way they’d allow Adrian to earn extra swim time was if I came to the school and drove him to camp myself.  Why?  Because he’d jumped out of a running car on a teacher just last year and can’t be trusted.   Add an extra hour to my daily drive time.  Three hours in the car!

That didn’t leave much time for anything else.  The other kids and I couldn’t go anywhere because it was always time to drive Adrian somewhere.

Then summer school ended and one would think we’d gain more freedom… um, yeah.  Adrian literally goes nuts every day till we go out somewhere.  But there’s no where to take him!  He’s upset and pinchy in the stores, I can’t take him to a park or that because of the new running problem and he gets upset in the car if you drive too long or if he doesn’t understand where you’re going.

My husband had a business trip and due to weather problems his flight was cancelled.  He decided to make a road trip of it.  I wanted to go with him so badly… but there was no way to take Adrian.  You can’t take Adrian to a hotel because he’s too loud and there’s the potential for him to destroy the place the way he’s destroyed our house.  Even if there were accommodations, what would we do with him all day?  It’s just impossible.

So my husband took his mother.  And once again, I got left behind.

I’ve racked my brain trying to figure out where we can go, what we can do with Adrian.  This swimming thing was it.  It was our only hope of getting to do something fun, something beneficial for everyone.  

And once again, there’s just not enough of me to make it work.  It’s not fair to the other kids, it’s not fair to Adrian.  I’m totally frustrated with the whole thing.  I can’t give everyone what they need and deserve.  There’s just not enough of me.

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August 22, 2011

Specific Carbohydrate Diet

Back when Adrian was 2 years old we gave the Gluten Free/Casein Free (GFCF) diet a try.  Within the first couple of weeks we saw improvements.  He was signing, making more eye contact and his behaviors improved.  The difference was quite noticeable.  There was enough evidence that we stuck with the GFCF diet for another 18 months.  At that point we slowly began adding things back in.  We saw no adverse changes so we went with a regular diet again.

The thing that stinks about doing these diets is that there is no way to know for certain if the changes you’re seeing are really from the diet or if they’re a product of something else in the environment.  And there’s always that possibility that the naysayers are right and we’re just seeing what we want to see.

But ultimately, whether it’s the diet or something else, real or imagined, if the situation feels better, then it is better.  It’s that simple.

We’ve had Adrian on the Specific Carbohydrate Diet (SCD) now for a little over a week.  And so, of course, the question is, “Is it working?”

For all the reasons I mentioned above I still don’t feel like I can answer that with any certainty.  What I can tell you is that it does feel better.  We’ve had fewer fits and when he does flip out, he’s calming down MUCH faster than before.  We’ve gone 3 days now with a decrease in our ’emergency’ meds. 

Beyond that, we’ve eased tension in one of the areas that was driving me crazy – the food seeking!  Every moment of the day Adrian was begging for food before.  And he doesn’t take ‘no’ for an answer!  It was a huge point of frustration for me.  He was always hungry and I was always trying to hold him off till the next meal/snack time because he was already consuming too many calories. 

Granted, that was totally my fault.  He had been on the LMD (Lazy Mom Diet) for quite some time.  As his appetite picked up, it was easier to just feed him the quick foods he liked rather than prepare completely separate meals and snacks for this uber picky eater.  Fish sticks, chicken patties, waffles, pancakes, goldfish, hot dogs, … lots and lots of horrible, carb-filled food.

On the SCD, all that is gone.  And all the protein that’s replaced the carbs means he’s not as hungry.  For that reason alone, this diet has improved our situation (not to mention his health). 

At this point I’m spending a good hour or two a day in the kitchen cooking and baking.  I don’t enjoy it, but I’m committed to giving this a full go.  For now, I have the time to devote to this so I’m just going to continue until a reason to change presents itself.

August 16, 2011

Running…

I think to post here almost every day and yet when I finally get a moment to sit down I can’t bring myself to write it all.

Things have been rough with Adrian these past couple of months.  I’m tired.

The aggression seems to come in waves – worse for a week or two then suddenly a day or two without too much trouble.  Far too often though we find ourselves out of meds for the day, out of energy to deal with an out of control teen and out of ideas about how to make it better.  There’s new holes all over the house. I’ve replaced the cardboard coverings on many of them over and over.  I’m weary of being pinched, pushed, slapped and spit upon.

Then there’s the newest problem.  Running.  Many years ago Adrian was a runner.  We eventually broke him of the habit at home by taking him to the mall and letting him run away.  The doors were few and far enough between to make the gamble relatively safe.  He was always in sight as he had no interest in going into the stores.  He quickly learned we weren’t going to play the chase game just because he ran and so he gave up on running from us. 

It’s worked all these years.   Recently he’s been running on them at school.  Into the parking lot, out of running cars, into the woods behind the school, out the door, …. And he’s fast.  It scared the staff and well it should.  He doesn’t recognize the dangers.

At home it still wasn’t a problem and for that we were grateful.   But then it happened.  The other kids were taking out the trash and Adrian slipped out the garage door.   He ran down to the end of the driveway where the other kids were.  Then he kept on going.  My husband and I bolted from the house, used every technique we’ve used successfully for years to no avail.

He ran down the middle of the street a quarter of a mile, turned the corner and was headed toward a high speed, high traffic road when I finally caught up with him in the car.  He thought the whole affair was terribly funny and continued with rather manic behavior that entire evening, constantly threatening to run out the front door.

Since then he’s threatened to run several times.  Opening the front door or the garage door or trying to pry open the gates in the back yard.   We’re constantly asking, “Where’s Adrian?”  And the vigilance is exhausting.

With the desperation comes the resolve to try something new – anything that might help.  So this week we’ve started him on the Specific Carbohydrate Diet (SCD).   I’m praying that it makes a difference – even a little bit.   Because while he’s apparently got plenty of energy, I’m not sure I have enough to keep running at this pace.

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