Utter Autism

December 28, 2012

The Difference a Year Makes

“He’s being medicated multiple times a day and put in the shower (our ‘safe-room’ when he’s out of control) multiple times a day. I must take him out for a drive at least once a day.  Some days when he’s particularly out of sorts and he’s already had more meds and another shower we’re driving multiple trips totalling an hour or two.”

That’s what I wrote here just a year ago.  When I wrote it I could not have even imagined where we are today.

Adrian has been in his residential school placement since April and doing very well there.  He’s always happy to go back.  He seems comfortable and happy.  We love the staff and they seem to love him.

We’re still playing with the medications, looking for just the right combination… the biggest impact for the least amount.  This last one we tried seems to be helping quite a bit.  We were able to have Adrian home for 2+ days at both Thanksgiving and Christmas.   He was pretty calm and we had no major incidents.  It was a relief considering that we’d had single night visits before which hadn’t gone that well.

 

There’s still much to be said about this whole process.  I often think about how I need to sit down and write about it all.  Part of the problem is finding words to describe the complicated reality of it all.  The other part is the fear of being misunderstood.  A year ago, I’m not sure I could have understood myself.

But the more time goes on, the more confident I feel that we made the right choice for Adrian… and for us.  The change has been overwhelmingly positive for everyone.   I’ll start the new year remembering what a difference a year can make… and with hope things will continue to get better and better.

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July 13, 2012

Phone Home

Thanks to the miracle of technology we’re able to video call with Adrian in his new home.  Skype allows us to see and hear him as well as send typed messages.  The staff today helped Adrian call us and type some questions and answers.  Here’s the conversation:

 Adrian: hi mommy

Carol: hi Adrian!

Adrian: how are you

Carol: We are good.

Adrian : how was your day

Carol: we had a great day.  How was your day?

Carol: school?

Adrian: tis today

Carol: nice haircut!

Adrian: i had a fun day in school

Carol: it’s hot outside

Adrian: i went swimming

Carol: yay! swimming is fun

Adrian: we are eating pizza tonight

Carol: you LOVE pizza!

Carol: what kind of pizza?

Adrian: pepperoni

Carol: cool! yummy

Adrian: what are you guys eating tonight

Carol: echiladas – I know you don’t like those haha

Adrian: i,m going go play outside

Carol: goodbye

Carol: We love you!  Have fun!

Adrian: i love you

 

We’re so glad we can keep in touch with him this way 🙂

June 10, 2012

Vexing Visits

It’s another home visit weekend and Adrian’s here hanging out with us.   But I wish I could know exactly how he feels about that.  Before he moved out, it was just what we did.  There wasn’t another option.  Now there is.

When the alarm went off Saturday morning for me to go pick him up, I was having a bit of a nightmare.  In my dream our family drove to Adrian’s residence to pick him up but he wasn’t there.  He was with his housemates and classmates at a theatre.  So we drove over there and I ran in to get him.

But it was the dress rehearsal and Adrian was in the show.  Adrian was calm and happy, participating and following the instructions staff gave him.  Was I going to take him away from that?

As dreams do, I skipped to the next scene where they were having a dinner after the rehearsal.  I remember trying to use my phone to call my husband and let him know what was happening.  They were all waiting in the car.  But Adrian was enjoying his dinner, interacting with staff and having a good time.  How was I going to take him away from that?

Turns out real life isn’t that far off from my dream.  This Saturday Adrian’s house had plans to go to the zoo.  He was coming to our house instead … but is that what he would have preferred?  We just don’t know.  Adrian isn’t at all reliable about answering such questions.

At his residence he’s calmer.  He uses far less medication than when he lived here with us.  When we go there to take him out for a few hours, he’s always good.  It’s not until he’s back here at home for a while that the aggression pops up again.  Why?  I don’t know for certain.

What I do know is that we’ve somehow got to balance our visits with the other opportunities Adrian has now.  We need to find ways to spend time with him that minimize the aggression and stress and maximize everyone’s enjoyment.  One possibility is that we could pick him up on a Friday night for home visits and bring him back Saturday early.  That would reduce the ‘down’ time at home that seems to breed the behavior problems and also make sure he’s home to go on whatever weekend excursions his house has planned.

It may take us some time and experimentation to figure out that perfect timing, schedule and frequency of visits.  But I’m confident we’ll eventually find a way to regularly enjoy visits with him.  🙂

 

May 6, 2012

Speaking of Adrian…

It’s been over a month since Adrian moved into his new residence.  And for over a month now I’ve been thinking I need to write something about it.  But each time I tried I failed to find words.  There’s so much to say and I don’t know how to say it all.

This weekend is Adrian’s first visit home since he moved.  Somehow the familiar chaotic rhythm of having him here makes it easier to sit down and start typing. Go figure 😛

In general, the move went very well.  I don’t know that we could have asked for better.   His first few days were a bit rough as he learned the new routines and how to communicate with the staff.  But that all worked itself out very quickly and he was soon back to the baseline he had here at home…  Perhaps even better in some ways.

I could go into detail about how well the staff deals with things when he does present them with a bit of a challenge or I could report how Adrian has won hearts by sticking up for the staff when other students present challenging behaviors.  I could tell how Adrian’s already eating and drinking things there – of his own free will – that he would never eat or drink here at home or how the staff tells us all about all the sign language Adrian’s taught them.  I could go on with the cute stories of how he and his new roommate connect over xbox games or explain how incredibly calm and happy he was when we went there and took him out for dinner.

But really, to me, the thing that says it all best is how Adrian behaves when we leave him there at his house.   In the past, when we’ve had issues at school, Adrian doesn’t hesitate to let me know things are not well there with his body language and vocalizations at drop off.

When we drop him back off at his house, he’s comfortable and happy.  He’s made himself at home.   He kisses me and vocalizes a ‘bye’ and then goes off to do his thing… not even caring to watch us leave.

So yeah, Adrian is doing great.  And that means the rest of us are doing pretty well too.  🙂

April 1, 2012

But Why

“But why does Adrian have to go?  Why can’t he just live with us?”

That’s the question the 8 year old asked me yesterday.  I gave him the answer he’s heard me give a hundred times now, to practically everyone I talk to.

He needs more structure.  He’s wearing poor Mom out.  They’ll help him with his behavior and learning new things.

And all those things are true.  But as I thought about it, I realized there’s still lots of why questions under all those answers.

Why don’t I have enough time, energy and patience to keep this up?

Why is he built to need more structure, attention, activity and intervention than I can provide?

 

I don’t have answers for these.  Only God knows.  But honestly, I’m satisfied with that. 🙂

 

March 25, 2012

Moving.

After the usual red-tape roller coaster, we’ve got a move in date for Adrian at his new residential school less than 2 weeks from today.

I think my daughter said it best when she told me about a discussion she had with someone about Adrian’s move.  “Mom, I was smiling and crying at the same time.” Yeah, that about sums it up for all of us here.

It’s happy.  We really think Adrian will appreciate all the extra activity, attention and structure of his new home.  We think that having a new set of folks look at him through fresh eyes is going to mean gains in academic, self-care and behavioral skills.  We think that the change it’s going to make in our household, especially for the other kids, is going to be life changing.

But it’s also sad.  We will miss Adrian.  We feel badly that we couldn’t single-handedly provide everything he needs to be as successful as he can be.  It’s a decision you wish you never had to make, even if you know it’s the right one.

We realize that neither the smiles nor tears are going anywhere any time soon.  In fact, I’m fairly certain that this transition will be easier for Adrian than any of the rest of us.  It’s going to take us months to reimagine a different way of living – without Adrian here.

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.

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.  🙂

 

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