From Being Weary to Seeing Clearly

Adrian’s been out of control for about 3 weeks now.  It’s been a rough. We think hormones are partly to blame. It’s been severe enough that we made the appointment to speak with the doctor about options.  He’s very unhappy and his compulsive behaviors are preventing him from enjoying the things he usually finds calming and relaxing. 

I was feeling awful weary from it all this afternoon when I picked Adrian up from school.  Then, through the mirror, I watched as Zee and Adrian played.  They shared a few cookies, they laughed and giggled.  They played games where only the two of them understood the rules.  Adrian’s communication device lay lifeless on the seat next to me, defeated by the blow Adrian gave it when he threw it through the air earlier today. Just another in the long line of things he’s broken in the past few weeks.

But these two brothers didn’t need words.  They played and laughed and understood one another perfectly.  They put their foreheads together and giggled at one another. It was a sight to behold and brought tears to my eyes. 

See, despite the shattered window, broken baskets, cracked cabinets, the destroyed faucet and the constant slamming of doors and drawers… despite all the difficulties of the past few weeks, I was reminded that it’s really not all bad.  Adrian is part of our family and we love him.  The essence of Adrian is still in there, even when it’s hidden by a storm of rage and sadness.

Hopefully we can find a way to help him through this rough spot.  But regardless what lies ahead, I won’t soon forget the image of brotherly love or the reminder about how lucky we are to have him.

I’m Back!

Ok, so I really never left.  But things have been absolutely insane around here lately.

First, I was helping my husband get the websites up for our company.  The prototype of our software is close to being ready and we’re anxious to get it out there to the non-verbal kids we hope it will help. The one site is our company site, www.AutisTech.com    The other is a community site where we hope to bring together resources and infomation for parents of autistic children.  We’re hooking up with professionals we know to pick their brains about everything from IEPs to speech therapy.  Those articles should be out soon at www.EverydayAutism.com

Then there was the everyday stuff….

Monday my sister, for whom I advocate, came to discuss some things I’ll need to work on for her.  Then I had to go back to the doctor for a silly cyst on my back that’s been giving me grief for several weeks.  Ouch.  I closed the night out by hosting another Mom’s Night Out. 

Tuesday was a tag team doctor’s appointment for the boys.  Three shots total. 

Wednesday we picked my Mother-In-Law from the airport.  She’ll be staying with us indefinetly. 

Thursday I was asked to participate in a presentation at the NY Governor’s Expo on Assistive Technology.  It’s been a while since I’ve done public speaking of that magnitude so that consumed much of my time and energy the past few weeks.  My mother-in-law took care of the kids so my husband and I could go together.  It’s been many, many years since my husband and I have been out together, alone, in the light of day.  The presentation when off without a hitch and we had a great time.

I spent Friday doing approximately five hours of homework for a class on leading effective discussions. Yesterday I drove the 2+ hours to attend the class and drive the 2+ hours home.  The class was well done and I was glad I attended.

But now I’m tired.  I’ll spend today figuring out what I’ll need to do next week and trying to get some much needed downtime.  Oh, and catching up on all that laundry that’s piled up while I was busy doing everything else

Getting Back To Normal

Normal for us, I should say. 

Things have steadily been improving at Adrian’s school.  A draft behavior plan has been drawn up and implemented.  As a result, he’s much calmer and the aggressive behaviors have decreased significantly.  Relationships between Adrian and the team have improved and they seem to understand him much better now.

My job as Adrian’s advocate is never finished, but it seems that at least for the moment I can take a breath.

Consumed

I have been consumed lately by the situation at Adrian’s school.  It’s consumed my time, my energy, my sleep, my thoughts, my conversations, ….

I knew that things were not ‘right’.  I saw Adrian begin to resist going to school.  I knew the classroom was experiencing a lot of ‘aggressive behaviors’.  So I tried to talk to the staff.  I went in for a 3 hour meeting.  I spoke to someone from the classroom everyday.

Still things were getting worse.  Then I found out they were regularly using the safe room.  It’s a padded room with nothing in it and the most common way to use it is to lock the kids in until they calm down.  I understand that with this population, it may be necessary at some point to use such a room to keep people safe.  My son is getting big and strong and it’s possible that in a rage he could seriously hurt someone. 

The problem is that if things are going the way they should be at school, he shouldn’t ever be in a rage.  He’s been in this school for the last two years.  They used the saferoom a total of 9 times, after all other calming strategies were used and for at least the last 3 of those times (and I suspect many more)  Adrian himself sought a moment in the saferoom in order to escape a noisy classroom.  The teacher and I had agreed early on that a ‘lock-him-in’ strategy was not in his best interest, nor should it be necessary.

Two meetings later, I’m still not confident we’re on the same page.  Blogging is on the back burner till that happens.

Communication Aid

A few months ago Adrian got his communication device. I keep a blog at UtterAutism.com that talks about some of the ways he’s been using it. 

But there’s other perks to having this system in the house.  Zee has been playing around with it when Adrian’s busy elsewhere.  The pages are heavy in PECS making it easy for Zee to navigate through the pages.  I have several pages of educational activities and Zee’s been playing with those a lot.  He’s been matching animal pictures and words, started to sight read colors and done counting and number recognition activities.

By far, his favorite activity is typing words.  He’s already learned to type his first name, Mom, Dad and the first part of Adrian.  He can also identify the first letters of the girls names.  We’ve typed color words and animal names too.  The fact that the machine will ’speak’ what he types is highly motivating. 

Adrian has also been watching Zee type and I hope he’ll be inspired by his little brother’s progress and give it a go too.

Busy, Busy, Busy!

Not a lot of time these days.  I’ve stayed up way to late, way too many nights programming Adrian’s device…. and I’ve still got a list of things I still want to add. It never ceases to be a work in progress, but after waiting all this time for it, the urge to keep at it is strong.  Adrian encourages my efforts by making good use of it all.

The girls are wrapping up their projects.  Friday will be the big presentation day.  The last hoorah of third grade.  Next week is our one and only scheduled vacation week of the year.  I’ll need it to prepare our first unit study of forth grade and get Adrian ready to start camp.

This week has been particularly hard for Zee. Most parents agree, there’s no such thing as the terrible twos – it’s all in the threes!  Aparently it’s been ‘Fight the Power of the Parents Week’ and no one warned me.  I remember when the girls when through a similar period when they were three.  Right now I’m just glad there’s only one three year old in the house and not two.  Still, he’s a fast learner and already I see signs that he’s getting the idea that no matter what he does, Mom’s in charge, the rules apply to him and consequences follow bad choices.  Only a few more months till we move into the fabulous fours!

So, I’m going back to programming now.  The speech therapist comes tomorrow to talk about Adrian’s new communication device.  I want to get as much done as I can in preparation for her visit.

Warm weather and a bucket of cold water… perfect!

One of the few things that will calm Adrian down when he’s done off in a tizzy is water.  In the winter we’re left with little choice but to put him in the shower till he calms down.  He’s always had a preference for cold water, especially when he’s upset.  It seems that somehow it helps him.  When he’s in the shower upset, I’ll often fill a cup with cold water and splash him.  It always stops a tantrum in it’s tracks and brings on the giggles instead.

Now that the weather has warmed up we don’t need to tax our indoor plumbing anymore.  I simply put him outside and throw a bucket of cold water on him.  It’s interesting he’ll immediately quit the tantrum and start giggling even before the bucket is filled.

This year I’ve stumbled on a great way to keep the giggles going.  I saved an empty laundry detergent container (the kind with the spout) and filled that with water.  Adrian’s tantrum ended with the first bucket I threw on him but he and Bee have been out there playing with cups and water guns for an hour now, laughing the whole time.

First Words

We’re waiting for our new communication device (ACC) to arrive.  Adrian is 10 years old now and still non-verbal.  We had a device a few years ago but because it belonged to the school district and we moved, we don’t have it any more. 

When we first got the device we saw Adrian comunicate so many cool things.  Some of the things he ’said’ were surprising considering all the ‘evaluations’ which questioned his ability to use such ‘complex’ equipment.  Of course, we knew better.  Here are some of the cool ways he used the device:

· While at Grandma’s house for the third day in a row, Adrian used the questions screen to ask “When do we go home?”

· At home, Adrian independently put together an entire sentence to indicate what he wanted.  He said “I want to go downstairs, please.”  He did such a great job I had to let him go even though going down to the electronics part of the house is usually against the rules on school days.

· At home, Adrian wanted to take a bath.  He tried his usual techniques to indicate he wanted to get in the bath like pointing toward the bathroom and picking his shirt up over his head but I told him no, he’d already had a bath and he couldn’t take another.  So he went to his device and pushed the help button–he’d never used this one spontaneously before so I was curious what he was going to do.  From the submenu he pushed ” I need help in the bathroom.”  I had to laugh at this creative use of the device to say something it couldn’t otherwise say.  I added ’Take a bath’ to the list of special activities in the ‘I want’ menu.

· At school he did something similar with Mrs. Ward.  While discussing his house with her, a toy house caught his eye.  He used the button for ‘Your house’ as a means of asking for it.  Clearly he understands that this device is a versatile and productive means of communication!

· He also used the questions screen at Grandma’s house to reason with me about going to play upstairs.  He kept trying to go upstairs to play but there were people still sleeping up there so I told him he’d have to stay downstairs and play.  He went to the box and went into the “Time For” screen–he looked at it (without pressing any buttons) but when he saw what he was after wasn’t there he  went out into the question screen instead.  He asked “What time is it?”  Hmmm.  I thought for a second–it wasn’t breakfast time yet so I just answered “It’s wake up time.”  He gave me a ‘got ya’ look and marched confidently upstairs.  If it was time to wake up, then those sleepy heads needed to get up anyhow and that meant he could go up and play.   

I really wonder what other kids with communication devices talk about when they first get the device.  Anyone out there have a story for me?

It could have gone either way….

We just got back from a ‘concert’ at Adrian’s school.  When I had picked Adrian up from school, his teacher mentioned that they had just come from practice for the concert and that Adrian had found the noise a little overwhelming.  They gave him headphones to wear to help soften the sound.  But that got me to worrying.  Hubby and I discussed if taking him to the concert tonight would be the smart thing to do.  Being non-verbal, Adrian really doesn’t have a way to tell us whether he wants to go or not.  Given that he’d had trouble just with practice, let alone a whole audience full, I wondered if we’d go to all the trouble only to have him meltdown.  We decided in the end that either Adrian was going to either scream his head off upon arrival or else laugh and giggle.  The truth is it could have gone either way.

Fortunately, it was the latter.  Adrian seemed very happy to be there.  He said ‘Hi’ to lots of people he knew, sat peacefully in his chair waiting his turn, wore his adorable ‘Cat in the Hat’ hat for their song about Dr. Suess and beat his little drum like he meant it.  The staff had his headphones ready for us in case he needed them but even at the height of the cacophony he remained calm and genuinely happy.  Even when we arrived home, I caught him checking out his reflection in his hat, smiling at how he looked.  I wish he had the words to tell us what he enjoyed about the evening.

I’m really glad we made the effort to go.  But I can’t help think about the fact that it really could have gone either way.  So many times in the past similar ventures haven’t turned out well and we’ve simply not found a reliable way to predict his behavior.  How do you decide whether to make a go or not?  How do decide if something is worth a potential meltdown?

When Autism is Your Brother

It’s not easy having an autistic sibling.  I often think about the way the other three experience life and how it’s influenced by Adrian’s autism. There are limitations in where we can go, how long we can stay and what we can do.  They have to deal with Adrian’s pinching and hitting.  They have to listen to his tantrums.  He climbs in their beds after they make it, leaving a pile of blankets.  He sometimes breaks their toys.  He gets first dibs on computers and TVs, seating in the car and at the table.  They envy his wheelchair rides, his ‘alternate’ dinner options and his late bedtime.

Yet, for all it’s burdens, being Adrian’s sibling has so many other upsides that I know the kids don’t fully appreciate yet.  They’re learning first hand that non-verbal doesn’t mean stupid.  They learning every day that despite all the aggressive behaviors, Adrian has much love to give as well.  They’re learning patience and persistence. They’re practicing tolerance and understanding.  Certainly, they’ve more opportunity than most kids to develop valuable traits such as these.  

I could tell tale after tale of precious moments of connection between Adrian and his siblings.  The way Gee reads sign language books with him so they can sign together.  The way Zee begs Adrian to play chasing games with him.  The way Bee invites him to play catch with her.  They are all excited when Adrian learns something new.  They smother him with hugs and kisses each day when we pick him up from school.

Today Gee was pushing Adrian on the swings again. She ran in and out of the house asking about various signs he was making so she could grant his requests.  Seeing her enthusiasm you’d never guess that just yesterday he swung back toward her and knocked her flat on the ground.

In the end, I think they’ll end up feeling the same way I do.  Although living with Adrian isn’t always easy, I love having him in our family.