I’m Back!

May 18, 2008

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 😛

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Communication Aid

October 16, 2007

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!

June 20, 2007

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.

Is It Friday YET?

May 31, 2007

(blink-blink)

Where’s the coffee? (yawn)

Yes, I’m tired.  It’s been a busy couple of days and it seems my mind just won’t settle down at night.  Too much to do!  Too much to do!

Adrian’s commuication device arrived Tuesday evening.    I’m dying to dive in and get him talking but yesterday was booked with dental appointments and a meeting. I’ve hardly had two minutes to look at the device. My mind continues to churn all night thinking about layouts and vocabulary.

I’ve got to get the 4th quarter reports and annual assessments prepared for the school.  Most of it is copy and paste and I know it’s unlikely that anyone is even looking at the stuff but for some reason it remains a log on my stress fire until it’s completed.

I’m helping out with VBS this year.  I’ve got about a month to figure out costumes, room decorations, lesson plans, purchase supplies and be ready to teach.  By itself, I don’t think it would be such a big deal.  Might even be fun. But right now, you guessed it, it’s fuel for the fire.  I lie awake at night and wonder, “Can I make a covered wagon out of some chairs, fabric and couple of pool noodles?”

With all the distractions, somehow the laundry has gotten out of hand.  The litter pan needs cleaning. The downstairs bathroom is out of toilet paper. The whole house needs a good vacuum. Hubby’s Father’s Day gift is supposed to arrive today.  I purchased something that needs to be assembled… because I don’t have enough to do already, right?

After approximately half an hour sleep last night, I got up at 5 am with hubby this morning.  Mostly he works from home, but today he’s gone to the city so he had to leave early.  I wasn’t sleeping anyhow.

I ask again, “WHERE’S THE COFFEE?”

Never mind, too late.  Time to rouse 4 children, dress them and pack them in the car with a lunch, a book bag and that permission slip I still haven’t signed…. uh, where did I put that?

First Words

May 2, 2007

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?

I turned in the last of the paperwork today for my son to recieve a device to allow him to ‘speak.’  It reminded me of something I’d written a few weeks back so I thought I’d post it.  Having the paperwork in simply means we’ve several more months to wait. 😦

Some call it assistive technology (AT). Others say it’s augmentative and alternative communication (AAC).  Hearing either term causes me to experience of flood of mixed emotions.  On the one hand, the technologies these terms refer to have the potential to offer my non-verbal, autistic son a voice. On the other hand, I’ve had enough experience with trying to obtain and use these technologies to know that that potential is thwarted by the industries, professionals and funding systems that control them. It’s not that they mean to. It’s just the way things have developed. AT is expensive, which is to say it requires funding. The industries that sell the AT know that funding is required and therefore set their prices according to what the funding sources will pay. Since most parents with small children don’t have money coming out their ears, that funding most often comes from the government.  You might think it’s nice of them to fund it, until you remember that government funding involves a lot of red tape.  Enough red tape to run for years and years.  The red tape leads to the next group of people who get involved –   the professionals.  In order to justify spending the money on AT, the government requires lots and lots of documentation.  There are AT experts, speech therapists, teachers and doctors involved. There are evaluations, trials, prescriptions and reports.  It’s not that these are bad people; they’re doing what they can to help your child get AT in the system that exists.  But ultimately this whole process leaves out the most important experts in respect to the child, the parents.