Utter Autism

November 14, 2011

Making Family Understand

One of the more difficult parts of having an autistic child is that there are no guarantees that extended family will understand the situation. 

We often host family members here at our house.  Part of that is because we are lucky to have a spare room we can loan out.  The other part is the fact that Adrian limits our travel.  Family has to come to us or we don’t see them at all.

Recently I got a call from my grandfather though.   His 90th birthday is coming up and they’re having a big party, of course!   They want us to come.

If only it were that easy.

They live nearly 5 hours away.  We’ve had problems with Adrian on a 2 hour car trip.  And by problems, I mean him banging car windows, trying to escape the car, hurting others in the car, … ya know, really bad stuff.  The kinda stuff that makes it unsafe to drive but you don’t dare stop cause you’re just so desperate to get him home and end the nightmare.

Then there’s the fact that it would require an overnight stay.  Um, I would LOVE, LOVE, LOVE to be able to get away.  I love hotels.  I love vacations.  I love road trips (where the afore-mentioned nightmare doesn’t occur). 

But hello!  We can’t do hotels with Adrian.  We have tried.  We’re lucky they didn’t kick us out.  And that was long before his man-sized tantrums began.  Before the aggression, before the holes in the walls and destroyed property. We simply can’t take him to a hotel.

And then there’s the party.  Adrian can’t attend.  Not only would he be disruptive but he’d be miserable… and guess what his behavior is like when he’s miserable?  He can’t handle crowds or noise.  We can’t even take him to a restaurant without significant problems.

So where does that leave us?  Well, it’s not looking good.  But they really want us to come so they offer suggestions.  “Can’t Chris stay at the house with him while we’re at the party?”  “Can’t you can the other kids come?”

Um, no.  See, Adrian experiences a lot of anxiety when I’m gone.  And can you guess what his behavior is like when he’s anxious?  Every moment Adrian isn’t in school, I’m the primary caretaker.  I have to be. 

Couple weeks ago I left my husband home with Adrian for an hour and a half.  I came back and Adrian had put a new hole in the wall, broken a window screen and was physically fighting with my husband.  It’s not my husband’s fault.  Adrian’s anxiety when I’m not around pushes him over the edge.  My husband works and so he spends much less time caring for Adrian and can’t always see the signs and catch him before he’s gone over into tantrum land.

Besides all that, there’s some sorta testosteroni thing going on there.  Adrian tries to get my husband going.  He will do things purposefully that he knows will anger my husband (hitting me, for instance) and laugh, as if to say, “What you gonna do about it?”  It’s not a good plan to leave these two alone right now.

Again, I would LOVE, LOVE, LOVE to get away for a couple of days.  I spend a crazy amount of time daydreaming about just that.  But right now, it just can’t happen.  It’s not safe.

So that leaves us with what?  Well, Adrian isn’t going anywhere and since I have to be with him, I’m not going anywhere.  The only option left is to send my husband with the other 3.  Yeah, he’s married into this family, remember?  That alone makes it weird. 

Add to it that he’d be leaving me and Adrian home alone.  Again.  Yeah, I’m not gonna lie.  I cried last time that happened.  It’s really hard to have to be constantly left behind.

Most of this was explained to my grandfather and his wife over the course of the phone call.  They say they understand but you can feel it, they don’t really.  They want us to come and they can’t quite wrap their brains around the possibility that there is no way.

I love my grandfather and I wish things were different.  I want to be the granddaughter he wants me to be.  But I can’t do that and also be the mother Adrian needs me to be.

Advertisements

October 18, 2011

Still on SCD

I’m happy to say we haven’t had any more flare-ups anywhere near as bad as that last one in September.   That’s not to say that everything has been absolutely perfect.  There are still days when, for whatever reason, things are a bit harder.   But overall?  Overall our situation is very much improved from the way things were pre-SCD.   Most days we have no major incidents and he’s generally calm and happy.  The tantrums we see are short lived and much more mild.

This diet has absolutely made a huge improvement in our lives.  I can’t imagine going back now.

But Adrian’s little brother can.  Weekly he asks, “When does Adrian’s diet end?”  He doesn’t like the answer. 

As much as little bro misses his American cheese, I don’t feel like it’s really been all that hard on us keeping to our rule that we will not eat things Adrian can’t have in front of him.  The other kids are homeschooled and the hubby works from home so we often will have the ‘illegal’ foods during the day when Adrian is at school.   They still get to eat their sandwich bread and munch on the occasional cookie for a treat.

Dinners we usually either have foods Adrian doesn’t like at all or have things the whole family can eat together.  The diet has had a positive effect on everyone’s diet as I’ve discovered new dishes to try in searching for Adrian safe alternatives to some of our old regulars.  Chicken burgers, spinach in cheese sauce, cauliflower mac n’ cheese and cheddar crackers have all made it into our regular rotation. 

We’ve also seen Adrian’s food list expand slightly as well.  For an autistic child, even ‘slightly’ is a big deal!  He’s now eating additional dried fruits such as apple and pineapple.  And we’ve managed to find a ‘pancake’ recipe he’ll actually eat!  It’s called easy sandwich bread but if it looks like a pancake and smells like a pancake….. So far the only way he’ll eat it is topped with peanut butter and honey.  Still, that’s another meal I can send for lunches.  Yay!

So we’ll be continuing the SCD for as long as it continues to offer us this much more peaceful life.  Even if it means no more American cheese 😛

September 19, 2011

Duct Tape for Life?

So this past week was rough.  It started out ok.  We were seeing more aggressive behaviors and much less calm from Monday on.   We know he ate part of a wall at one point and I discovered that a pizza dough I made used an illegal parmesan cheese.  He’d eaten that on Sunday and Monday. 

So ok, we fix that and we’re good.  Right?

Wrong.

We never quite got back to that good spot again the entire week.  We did ok but it wasn’t the same.  While he was coming down from tantrums faster than before the diet, we were still having tantrums all the sudden when we hadn’t had any for weeks.

Hmm.

Then Saturday and Sunday came.  And it was awful.  Right back to as if we never started the diet.  WHY?

We just don’t know.  We keep things Adrian can’t have locked up in a footlocker.  We did find that wide open on Saturday at around 11 am.  But despite the fact Adrian must have been in that room, we can’t see what, if anything, he took.  There were muffins, candy, chocolate chips, rolls and cereal all there, seemingly undisturbed. 

The only thing he could have taken that wouldn’t have been obvious was granola and cereal bars that were all thrown in a plastic grocery bag.   But then there would have been wrappers and we didn’t see any.  Granted, I didn’t go searching through the garbage.  I wish now I had.

Saturday was bad.  Sunday was worse.  Today the school had the worst episode they’ve seen since the start of the school year.  He came home with his shirt all ripped up from a rage – Hulk Hogan style.  He’s been crazy here since he got off the school bus two hours ago.  And all of that was with using all the meds. 

The worst part of it all is I just don’t understand why.  What’s different?  Is it something he consumed?  If so, what?  Could it be he got to something in that box and it’s just taking longer than the usual 24 hours to go through his system?   Could it be the dried pineapple that I was so happy he finally ate on Saturday and Sunday?  Is it something else in his diet that I messed up with?  Is it something he was eating before that he’s reacting to now?  Does it have nothing to do with food at all?!

At this point you could tell me it’s nothing more than the phase of the moon and I’d be happy.  I just want to know WHY.

The return of these behavior problems brings back all the old familiar stress.  I can feel it in my back and in my shoulders.  I’m listening to him carefully, trying my best to catch him before he goes over the cliff into total lack of control, waiting for the smash of a window, the banging on the wall, the yelp of a poor sibling who happened to be in the wrong place at the wrong time,  another broken appliance, another hole to fix, …

I’m sitting here with duct tape now, repairing the computer headphones he broke in a tantrum.  I’m covering every last inch with duct tape.  It’s the only way we can make them last.  Then I’ll duct tape a new set of ear buds for his music player because after months of abuse, he finally broke the last duct taped pair.

And I can’t help but wish that duct tape could fix all of this too.

September 10, 2011

SCD: Today’s Baking

In the time it took my husband to prepare yummy pasta and shrimp in a lovely cream sauce for the rest of the family, I did my baking for Adrian’s SCD.  I made….

1.Peanut Butter Brownies (I double the recipe so I can use the whole 16 oz jar of peanut butter at once.  It bakes up perfect in my 9X9 silicone pan.)

2.Ginger Cookies (you can probably guess we didn’t roll and cut them out cause, yeah, I’m too lazy LOL)

3. Lemon cake  

6 eggs
1/4 cup lemon juice
1/2 cup honey
1 tsp vanilla
1/4 cup plain yogurt
3/4 cup coconut flour
1 tsp baking soda
1 tsp lemon extract
1/2 tsp sea salt

The recipe I derived this from is found here and is for orange cake.  We made it as orange cake a few times and it was good.  I was curious what it would taste like if I substituted lemon for the orange.  Answer?  Super yummy cake that everyone loves.  We tried that marshmallow frosting a couple of times and found it was too sweet for our tastes no matter how little honey we added.  The cake is better all on it’s own.

4. Flatbread

WET INGREDIENTS:
12 eggs
¾ C oil
¼ C coconut milk
1t lemon juice

DRY INGREDIENTS:
1 C coconut flour
1 C almond flour
1 t baking soda
1 t salt

I found this recipe here but it looks like the webpage has expired so I’m recording the recipe here in case it suddenly disappears.

That was my baking for the day.  We had the lemon cake for dessert.  Everything else was sliced and stocked in the freezer.  One more baking session tomorrow should leave me in good shape to start the week.

Meanwhile, we’ve gone 3 days now with no ’emergency’ behavior meds.  He’s been calm and happy. Even the doctor noticed the difference when Adrian was there for a checkup last week. I’m usually doing an octopus impression while speaking to the doctor, getting pinched and pushed all the while.  This time Adrian waited calmly for 30 minutes in a packed waiting room (not the norm for this doc but they all have bad days I guess) and then sat quietly while I spoke with the doctor.

Over the course of the summer, the teacher was happy if they could keep the aggressive behaviors to less than 4 per day.  It didn’t usually happen.  Adrian’s already had 3 days of school without any aggressive behaviors. 

The difference is huge.  So much so that my husband and I are just sorta waiting for something bad to happen.  To think that it can stay this good would be a dream come true.  As my husband puts it, we’re cautiously optimistic.  We don’t want to risk disappointment if the spell is somehow broken here at one point.

But that doesn’t mean I’m not going to enjoy every minute.  🙂

 

September 5, 2011

Diet Update

We’ve been doing the Specific Carbohydrate Diet (SCD) with Adrian now for 3 weeks now. 

It’s been the best 3 weeks in … well, a very long time.   These behavioral problems with Adrian stem back a good year and a half, if not more.  I’ve spent the better part of those 18 months feeling very stressed and helpless.  Not much of what we tried really helped much. 

I think it’s working. 

It feels better and, as I said before, that’s really the only thing I can base my opinion on.  No matter how subjective it may be.

Within that first week we had far fewer outbursts.  He was calmer.  We were able to get into a daily rhythm that was productive and satisfying for us both. 

This diet does not remove his OCD behaviors.  But it did significantly help the OCD over food.  That makes me wonder if it never was OCD but actual hunger brought on by the overabundance of sugar and carbohydrates in his diet.  Duh!  That alone makes this diet worth continuing.  That was a HUGE point of frustration in my life.  Gone.

We’ve had a few opportunities at this point to gain further evidence that there is a true reaction to starches and sugars.  The first did not come from food at all.  Adrian ate the sheet rock from a hole he made in his wall. The next day was horrible. 

I didn’t make the connection at first but his behavior was so different from what it had been that I kept thinking on what might have made the difference.  A quick search on the internet brought to light that sheet rock has starch in it!  I filed that in the ‘sounds strange but maybe possible’ explanations.

The next bad spell was this past weekend.  Adrian was terribly, terribly out of control Saturday and Sunday.  He was full on punching me, pinching and also attacking my husband. He destroyed cardboard that’s hung on the walls, untouched,  for weeks now.   It was abosultely devistating and very, very scary.  And that was after tripling the medication we’d had been using while on the diet!

The behavior started Saturday around 11am.  We’d already made the decision to get pizza, a big diet no-no, on Sunday.  First, because it’s the one food I haven’t been able to reproduce to his standard and he misses it.   We also wanted to do a ‘test’ before we send him back to school on Wednesday to see if there was a reaction.  We got our answer.  Heck, yeah, there is!

But that still didn’t explain why he was also nuts on Saturday.  I racked my brain and finally realized this afternoon that we gave him bacon on Saturday morning!  It’s supposedly legal on SCD in small amounts on rare occasions.  But I bought the wrong kind.  It was higher in sugar than it should have been.   I figured it couldn’t matter that much.  I was soooo wrong.

That means that every bad episode we’ve had in the past 3 weeks can be accounted for by his consumption of something not legal on the diet.  Sceptics will have to bear with me.  Come live my life for a bit and then you’re welcome to tell me I’m dead wrong.

Today we went back to the strict diet and, over the course of the day, Adrian returned to his calm SCD self.  It was strange to watch.  He tried to speak again – something he’s been doing a lot of on this diet.  He wrote and typed out a couple of messages for me.  Peace slowly returned.

Numerous times this evening we hugged and I told him how glad I was that he was feeling better.  This diet doesn’t fix everything but it absolutely IS the light at the end of the tunnel.  It’s making life livable again.  Praise the Lord!

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.

May 7, 2011

Mid-Year Review

Thankfully, this really has been a much better year than last year’s nightmare.

Better.  I didn’t say awesome.  😛

We’ve still got new holes appearing in our walls too frequently.  We’re still looking at OCD that rarely takes a break.  We still have those moments of frustration and exhaustion.  But we’re surviving.

Besides the meds (which have been absolutely key), we’ve also developed a few new strategies to deal with Adrian’s behaviors.  For unacceptable behaviors such as banging on the house or hurting people, we’ve been asking him to lie down.  If he’s calm enough we can take him to his bed.  If not, he lies right on the floor.  We apply pressure to his back and shoulders.  He finds this calming and most times he’s able to get up in a few minutes and get himself back under control.  This position also allows me apply pressure,  hold him and avoid getting hurt if he’s really out of control.

If OCD is playing a part in the outburst I’ve been asking him to complete a simple 25 piece puzzle before going back downstairs.  It’s enough of a distraction for his mind that he usually calms down by the time it’s finished. 

We’ve also had success breaking an outburst by taking him for a ride in the car.  But this can backfire though if he assumes we’re going somewhere we’re not.  I’m waiting for the day he pounds a car window and it finally gives way.  It’ll happen.

The warmer weather means we can encourage him to go outside where he can OCD on picking leaves endlessly.  He finds this very calming… even if it kills every tree and bush we own.  *sigh*

For now, we’ve completely given up trying to repair the walls.  He simply destroys the repair within days.  Instead, we’ve taken to screwing pieces of cardboard to the walls to cover the holes.  No kidding.  This keeps him from eating the broken bits of walls, tearing at the holes to make them bigger and serves to take the beating he insists on giving certain locations over and over. 

We figure eventually our whole house will actually be made out of cardboard.  Everyone looking to make a quick buck should buy stock in drywall in about 4 years because that’s when Adrian will move out and we’ll likely be replacing every single wall of our house. 

Oh, and kitchen cabinets too.

December 11, 2010

Meds… That’s What

We’ve always approached medications for Adrian with caution.  Less is always better.  Except when it’s worse.

Thanks to medications, we’re now able to have lights on at night.  Suppose you can’t imagine what a blessing that is until you try to live with Adrian shutting off every. single. light.  all night long.

Thanks to medications, he’s no longer endlessly walking in circles, bumping specific points here and there.  Over and over and over again.   It’s a relief for us and I can’t imagine how much better he must feel not being compelled to do that.

And now, thanks to medications, we have answer to, “Now what?”

I can’t express how much better it feels to know that when all our other strategies fail, we have something we can do to help him calm down and keep everyone safe. 

Scary, man-sized temper tantrums?  You’re not welcome here any more.

November 3, 2010

But THEN What?

Over the years our worst case scenarios haven’t really been all that bad.  Reading about the struggles some other parents have typically reinforced my gratitude for all the areas we don’t struggle. 

…he’s always been a good sleeper, with modifications we can take him into the community, he’s got a great sense of humor, his charms have won the hearts of so many who work with him, my husband and I make a good parental team, he listens, he helps out around the house, he gives great hugs, he’s good about going into school, ….

No matter what the difficulty, we’ve always just faced it and moved on.  I’m not the type to give up.  We always find a way.  I’ve got pretty good intuition when it comes to Adrian and I know how to use behavior modification techniques to come up with creative solutions.  In nearly 14 years of parenting Adrian, we’ve never faced a challenge we couldn’t meet. 

 That’s not to say we always get it right on the first try.  I’m a planner and besides the current strategy I typically have a backup idea or two to fall back on if things don’t go well with plan A.  I’ve always enjoyed having the luxury of that security… until now.

The aggression that’s cropped up this past year has been a huge, overwhelming, life-sucking, distressing, frustrating monster.  At this point I feel like I’ve thrown every trick in my bag at it – twice.  And still we find it there.

Most of the challenges from our past could easily be endured.  But this aggression, it’s different.  Adrian’s been a pincher for years.  We’re no strangers to black and blue marks up and down our arms.  But this is a whole other ball game.

In this past year I’ve genuinely feared for our safety more times than I can count.  Mine, his, siblings, my husband, teachers, grandma and friends who visit.  He’s putting his fist through walls and windows on a regular basis and in a true rage, he doesn’t think twice about extending that hand to one of us.  It’s difficult to admit, but the situation can be downright dangerous.

We’ve met with all the experts and picked their brains.  We’ve got meds going and strategies to deal with his behavior… all the right stuff.  And it’s helped.  But still there are those times when nothing helps.  And THEN WHAT?

When I ask the experts this question, they raise their eyebrows,  take that deep breath and exhale and say, “Well…” 

And they’ve got nothing.  Nothing.

« Newer PostsOlder Posts »

Create a free website or blog at WordPress.com.