Utter Autism

February 7, 2010

Hospital Adventure: Routine

Filed under: Forgot to pick a category — Carol @ 5:04 am

With the major procedures done, today was all about adjusting to the new routines.  Regular checks of his blood pressure and temperature, administration of the antibiotics and pain medications, checks by nurses and doctors, scheduled meals and the complicated logistics of restroom use. 

He passed the time between napping, watching TV and movies, listening to music, playing with some figures I brought from home, taking very slow wheelchair rides around the small unit.  

He seemed relaxed, generally comfortable and in good spirits.  There were no outbursts and no incidents of aggression.  Under the circumstances I don’t think I could really ask for more.

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December 14, 2009

A Year Later….

It’s been a whole year since I last posted here.  It’s been a very difficult year.  With puberty in full swing we’ve had issues with increased aggression and changes in medications.  At 5’7″ and 180 lbs. he now towers over me and can easily out muscle me.  There have been more broken windows, broken appliances, broken doors, broken beds… 

And yet the news isn’t all bad.  He continues to type words on the computer and in his Dynavox.  He’s discovered Google and YouTube and regularly types in long lists of keywords to find things to watch and see.   He’s picked up a few more chores (aka living skills) including filling the dishwasher, putting away his own clothing and even becoming independent in toileting. 

The latest report from his speech therapist:

I also wanted to fill you in on the reading and writing program that I started him this year.  Both myself and his reading teacher have been working with him on it and it’s been a huge success.  I put together a literacy binder that has pictures of functional every day objects and corresponding words.  Some of the categories include; food, leisure activities, numbers, shapes, household objects, appliances, etc.  We have been gradually increasing pages since the beginning of the school year.
He began by using his keyboard to type in a word, listen and match it to the corresponding picture.  We then moved to showing him the word and having him match to the picture.  He is now able to type many of the words when shown only  the picture.  In many cases, he is able to type in just the beginning part of the word.  This has given me a great opportunity to work with him on using the word predictor feature on his device.  He’s really starting to catch on! 

All good news.  After a rough time at camp this summer we were thrilled to find that his return to school went spectacularly.  The staff seems to be a perfect match, clearly ‘getting him’ from the first day.  It’s awesome to see the looks on their faces when we drop him off at school.  You can tell that they’re genuinely happy to see him and his eyes twinkle with reciprocal affection.

I’m grateful to have made it through what I hope will be the worst of this transition period into manhood.  And I’m looking forward to the coming year and all the progress he’ll make.

October 23, 2008

Where the Dynvox Can’t Go

Filed under: Forgot to pick a category — Carol @ 11:53 am

Even at 11 years old,  Adrian still requires some assistance in the bathroom.  For obvious reasons, we don’t want him to bring the Dynavox V into the bathroom with him.  And clearly we can’t see his ‘help’ sign through the closed door. Communicating his need for help while in the bathroom is one of those areas we hadn’t figured out a good solution for…until now.

We’ve installed a wireless doorbell in our main bathroom.  The button just sticks on the wall with double sided tape.  The receiver that makes the sound is powered by batteries and even comes with a handy belt clip.  We can take it or put it where ever we need to so we can hear it.

I thought we’d have to teach Adrian to use it.  It only took one explaination and he quickly understood.  Now he no longer needs to wander the house half naked to show us the help sign or engage in other less desirable behavior (like flushing the toilet non-stop or slamming the bathroom door repeatedly) in order to communicate his message.  One push of a button and help arrives 🙂

October 12, 2008

More Surprises

Filed under: Forgot to pick a category — Carol @ 2:06 am

After another brief episode of malfunction, Adrian’s back to surprising us with his Dynavox V.

The other day he made creative use of some programmed vocabulary.  Adrian was ready for dinner (when isn’t he?) but we were waiting on Dad to bring the pizza home.  I explained over and over that the food was coming and he needed to wait.  He wasn’t satisfied with my answer and went into the page with phrases intended for the use of the microwave.  He asked, “How much time?”  He asked over and over.  I finally set the timer so he could see the time counting down.  He seemed happy with that and waited patiently for the pizza to arrive.

Then tonight he was trying to get my attention.  He surprised me by going into his keyboard screen and typing the word ‘mom’.  He’s never called me using my name before.  It was pretty cool! 🙂

May 18, 2008

Governor’s Expo on Assistive Technology

Filed under: Forgot to pick a category — Carol @ 10:02 am

This past week I had the opportunity to participate in a presentation at the NY Governor’s Expo on Assistive Technology.  With my Mother-In-Law in town, my husband and I were able to spend the day there.

We saw a lot of the devices and technologies I’d heard or seen online.  It was cool.  But I can’t tell you how my heart sunk each time we asked about pricing.  Most responded, “Medicaid Standard.” 

Medicaid standard.  Yes, they’ll charge every penny that Medicaid will pay for it. 

My heart goes out to all the kids and families who are still waiting for the government to push that Medicaid paperwork from desk to desk, still waiting for their appointment with someone who can evaluate their child for assitive technology, still waiting for teachers and speech therapists and pediatricians and school districts to contribute their approval, still waiting for the device to arrive, ….still waiting to get a voice.

April 14, 2008

Cabin Fever

Filed under: Forgot to pick a category — Carol @ 3:48 pm

The end of last week we had some illness run through the house and Adrian missed school Thursday and Friday.   This week is vacation week.  I’m thrilled to skip the daily driving.  Adrian is less than thrilled.

It’s only Monday and he’s already begging to go out – anywhere.  It’s gonna be a long week!

July 18, 2007

Back to Disney World!

Hubby bought the tickets today…. we’re going back to Disney World!

Adrian is 10 and he’s already been 7 times before.  We usually take one, if not two, trips each year.  Adrian loves going and for the most part we’d worked out all the kinks. Or so I thought …till our last trip.

We went to Disney about a year ago and it was by far one of the most difficult trips.  I was caught off guard by Adrian’s behavior.  Each day around midday, he’d melt down.  By the end of the week we got into the habit of returning to the cabin and hanging out till evening when we were able to go out without much trouble.  Being unable to tell us specifically what the problem was, all we could do was make guesses about why he was melting down.  Was it the heat, the food (or lack of acceptable fare), was it simply that he wanted to go somewhere specific and couldn’t tell us? 

I guess we’ll never know.  But I am revisiting those theories as we plan for this trip. 

July 2, 2007

To Camp and Back Again…. and To Camp and Back Again

Filed under: Forgot to pick a category — Carol @ 9:13 pm

Adrian was very happy to go to camp this morning.  He fussed a bit when I brought the backpack out, but when I mentioned camp he laughed.  He got in the car, smiling from ear to ear.

My mind wandered a bit as we drove and I missed the turn.  Adrian quickly let me know with a vocalization and we made a u-turn.  I thought about how pleasant the drive was.  We take the back roads there, winding through trees, beautiful views of the mountains, through a quaint little town and then up, up, up the mountain. 

We arrived just in time. The morning had gone so well.

So I thought.  I turned around to talk to Adrian and realized in his excitement he’d forgotten to put shoes on.  I checked to make sure we didn’t have a spare pair of flip-flops or something but no luck.

We had to drive all the way back home to get the shoes.  Sure, it’s a plesant drive.  But I’d rather not do it twice in an hour!

May 10, 2007

How our communication journey began

Filed under: Forgot to pick a category — Carol @ 9:32 pm

 Our journey into augmentative and alternative communication (AAC) began in earnest when our son was just 4.  It was clear to me that his difficulties with motor planning and fine motor skill would make it impossible for sign language to be an effective means of communication. We needed an alternative method. 

PECS were big right then and his preschool program used them regularly.  While they helped him communicate in school, we didn’t have an extensive library of PECS at our disposal at home.  Such systems were costly.

Speaking with Adrian’s teacher and speech therapist about my frustration they suggested the speech therapist could make a communication book for him which could go between school and home covering a range of topics applicable to both locations.  “Wow! This is gonna be great!”, I thought. 

Months later the speech therapist presented me with her finished product.  It took everything in me not to laugh or cry or both.  It amounted to a spiral bound notebook with laminated cardstock pages and a total of 5 laminated PECS attached with Velcro.  I had waited months for her to put this together for us and it was worthless. 

There have been several moments since my son’s diagnosis where I’ve realized that it was up to me, not the ‘experts’, to change things.  This was one. I went home and immediately began work on a communication book.  I used digital photos and simple drawings instead of fancy PECS. 

In the end I had a book which covered important, daily requests such as diaper changes and potty breaks.  It gave him a range of activities to choose from including blocks, figures, trains and animals. Other pages gave him choices for computer games, movies, arts and craft materials, foods and drinks.  Wanting to expand his ability to communicate more than just needs and wants, I included pages with pictures of family members so he could ‘start’ conversations about them.  A page of ‘feelings’ gave him the ability to say he was angry, sad, happy or surprised. 

 It’s true, Adrian used the book independently mostly to ask for things he wanted but he would participate with us when we looked at the family and feelings page.  It was a beginning.

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