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!  😀

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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 19, 2015

Holidays

Already we’re nearing the end of October and it’s time to schedule visits with Adrian for the holidays.

This will be Adrian’s 3rd Thanksgiving and Christmas living at his residential school.  The past two years we’ve had Adrian home for both these holidays.  Christmas seems to work out ok.  Thanksgiving?  Not so much.

I guess a lot of that has to do with the different schedules of these two holidays.  Christmas we always have a big breakfast, clean up and then settle in to open our gifts one by one.  It’s a process that takes a while but Adrian is usually happy to play on the X-box or computer during that time.  He occasionally drops by to see what’s up and we give him a gift or two to open himself.  Then he’s back to his games.  We always make sure he has a new game or movie to open early and the novelty of those keep him occupied.

Contrast that with Thanksgiving.  The main meal is served late in the day.  Unlike the Christmas morning feast, not everything can be make-ahead-and-bake.  Even though my husband handles the turkey and gravy, all the side dishes are mine to prepare.  And it never fails that Adrian is bored and starting to flip out the exact time that I need to finish my part to get dinner on the table.  Last year I anticipated it and prepared almost everything ahead of time… and it was still rough.  Just as everyone is ready to set down to eat, Adrian and I are walking out the door for a ride to calm him down. No one wants to eat without me so it throws everything off.  We eat and around the time dessert is ready to be served I have to take him up and put him in the shower to calm down again.

He doesn’t understand why we can’t go to the mall like we always do on his home visits.  He doesn’t like that all the visitors are taking my attention when he wants it.  He’s bored with all the entertainment choices by the afternoon.  And to make it worse, he really isn’t even into the turkey dinner we’re all trying to enjoy!

So I’ve make the difficult decision to not bring Adrian home for Thanksgiving this year.  I call it a ‘difficult’ decision even though reading through the paragraphs above it seems like the obvious thing to do.  Adrian is my boy and he’s always been with us for Thanksgiving.  It isn’t an easy thing to intentionally change that …even if it is the better choice for us both.

Instead of bringing him home for Thanksgiving this year I’m making plans to take him the weekend afterward.  We’ll go walk his favorite malls and eat his favorite meals – just the two of us.  Just the way he likes it.

And I’ll have a very peaceful, but slightly lonely, Thanksgiving this year.

February 26, 2015

Doing Disney Differently: Using a Wheelchair

From that very first trip to Disney World with Adrian, we learned a very important lesson that not only changed our vacation strategy but also our life at home.  Adrian could quickly become overstimulated (and then aggressive) in certain environments, especially Disney. But when he was seated and buckled into the stroller it worked like magic to help him be calmer and enjoy it all without being overwhelmed.  When he outgrew the stroller we switched to the wheelchair and found it had the same positive effect.

Ever since, we’ve owned a wheelchair for Adrian and we always use it traveling with him. Besides helping keep Adrian calm and patient, it makes it easy for others to recognize he has a disability.  Autism is invisible except for the behaviors.  Adrian looks just like any other 18 year old young man.  The wheelchair immediately let’s others know he has a disability which makes them more likely to give us a break.  No one is surprised when they see him act in strange ways.  People around us are more accommodating, understanding and patient.

Now I know some would say that he should walk if he can walk.  But if the point of the vacation is for us all to relax and enjoy it, then it makes sense to do what we know works.   The couple of times we did let Adrian walk around this time just confirmed for me that it is the right choice for us.

Adrian has no sense of personal space and when he’s walking around he often plows through groups of people, bumping them as he goes.  At nearly 6 feet tall and a hefty build, I’ve seen him nearly knock people down just passing them.  His size makes it very hard for me to guide and steer him.  I’m only just over 5 feet tall and no match for his momentum.  In stimulating environments Adrian has a hard time hearing and following verbal directions.  So you’ve basically got an out of control tank in a very crowded place.

Besides the benefit to parental stress levels and everyone around us, Adrian just seems happier using the chair as well.  You can see his body relax and his energy become calmer as soon as he clips that buckle in his chair.  He takes it all in and enjoys the ride.  He’s not overcome by a need to constantly stim like when he walks.

Fortunately Disney World is very easy to navigate with a wheelchair.  Most of the queues are wheelchair accessible and cast members are very helpful.  Using the wheelchair for Adrian is one way we do Disney a little differently.

September 17, 2014

Return to Disney World?

So I’ve been toying with the idea of taking Adrian back to Disney World for a couple of months now.  It’s been 5 years since we took him last.   That last was the trip where Adrian reached out and pinched a stranger because he was unhappy waiting for a meal.  I came back from that trip black and blue, beaten down, sad with the realization that we might not be able to bring him back.  His behavior was so out of control he was a danger to himself and everyone around him.

Of course the same was true at home at that time too.  But taking the whole nightmare on the road (or plane) just wasn’t a good plan.

Recently I’ve traveled with Adrian to his favorite malls, gone with him to restaurants and had peaceful home visits. It’s convinced me that it might be feasible to take Adrian back to his favorite vacation destination.  But I’m not taking any chances.  If we go, I want it to be a success we can build on for years to come.

So my planning starts with a novel idea.  We’re only going to take Adrian, not the rest of the family.  A good portion of why our visits have been so good is that, for the short time I’m with Adrian, I can focus completely on him.  The worst experiences we’ve had at Disney World with Adrian have all been linked, in one way or another, to our efforts to accommodate others.  We had 3 other kids who wanted to go on rides and do things Adrian didn’t want to do.  We tried to make everyone happy.  Sometimes Adrian did ok with that.  Sometimes it ended horribly for everyone.

At this point our other kids have had their chance to go to Disney World without Adrian.  It’s his turn to get the trip he wants and needs.  So this trip we will only ride the rides Adrian wants to go on.  We will take breaks when Adrian needs them.  We will eat when and where it works best for Adrian.  It’s all going to be for him.

I still hope that someday family vacations to Disney with Adrian will be possible… but we have to survive this one first!

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.

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.  🙂

December 31, 2011

Christmas Vacation?

What do you call the week between Christmas and New Years?  Well, we used to call it Christmas Vacation around here too.  But these days it’s not feeling much like a vacation at all.

I think it’s safe to say that Adrian and I both have had enough.   This break is no break for either of us.

He’s seeking structure constantly.  He wants to get up in the morning and go.  Preferably to school but if not, then somewhere. He’s bored with his computer by 10 am and resorts to annoying siblings and parents alike to entertain himself.  He walks around the house endlessly in an OCD loop.  Certain places he must walk backwards – we call it doing the moon walk.   Some areas must be rubbed up against or bumped.  This pinball machine doesn’t need quarters.

I’m dreaming of a day, just one, to sleep in.  And stay home and spend my time doing something other than feeding Adrian and showering Adrian and entertaining Adrian and driving Adrian and doing it all over and over and over.

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.

I’ve printed up a calendar and posted it on the wall to count down the days until school starts back up.  We’re both eyeing it carefully.  Tuesday can’t come soon enough for either of us.

November 17, 2011

Out of Breath

I’ve experienced labor twice.  First with Adrian and then with Zee.  The girls were taken by C-section a month before they were due.

Both times I experienced the same phenomenon.  My body doesn’t seem to know the rule is contraction, break, contraction break,…

For some reason, both times it geared up and repeatedly forgot the break.  I’d start out with single contractions and a break in between.  Within hours, it would switch to a peak-peak-break pattern.  Then on to peak-peak-peak-break.  And so on. 

I got up to 6 or 7 consecutive peaks with Adrian before I finally gave in to the epidural.  Not because I couldn’t handle the pain but because the lack of break meant I was just totally out of breath.  I remember thinking, “If only I could get a little break to catch my breath…”

That’s exactly how I feel now.  I just need a break to catch my breath…

Up until a few years ago when Adrian’s aggression really started to take over, I took regular breaks.  My husband is totally awesome and he’d take care of everything while I got away for a few days.   Sometimes I’d go to Florida to visit with my sister.  Sometimes I’d go to a peaceful church retreat.  Sometimes it was just a night out with a mom friend. 

It was all me time.  Time away from my responsibilities here at home.  Time to think, time to talk, time to pray, time to plan, …. just time.

The last time I was gone overnight was to visit my sister right before she had her first child.  He just turned 4 this past summer. 

These days I only leave Adrian at home with my husband when I have no other choice.  I worry the entire time I’m gone, watching the clock and constantly, imagining all that could be going wrong.   It’s not that I’m not paranoid.  I just know there’s a very good chance I’m going to come home to an overly anxious Adrian and a totally stressed husband and 3 siblings who wish they too could make it so Mom could get a break.  There will likely be tears, bruises and property damage to mark the occasion.  Going out without Adrian these days is no break at all.

We’re working on getting respite services so maybe we can get a night here or there without Adrian.   But it’s a long, slow process with no guarantees that it’ll work out in the end.

But I’m hopeful.  Cause I’m so ready for a break… just to catch my breath.

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