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Showing posts from October, 2013

Avaz: Terrific Communication App for iPad

I was given a month's use of Avaz for the iPad to trial and blog about.

We have used Proloquo2Go for over a year now, so I'll compare it to that, since that is what I know.

I thought it was pretty terrific overall.  Very easy to use.  Just the right number of bells and whistles but not so many that you get lost.

Pros:

   1. Cost.  At $99 it's almost half the cost of Proloquo2Go.  While it's more than others, I think it's much more useful and powerful than most of the entry level AAC apps.  If you are truly in the market for an AAC app for the iPad, I think this is an excellent one to get. If you are just getting your feet wet, perhaps a cheapo one is a good place to start.  When you move up, consider this one.

   2. Ease of use.  It's easy.  It's REALLY easy to use.  I was able to talk my oldest boy through configuring it just hours after I first used the app.  It really is THAT easy.

   3. It's powerful.  You can use words, pics or the cartoons pictur…

Worse than Autism?

There is a boy at one of the places that we commonly take Isaac. 

I don't like him.

He's difficult.  He can be hateful and rude.  He says and does things to hurt Isaac and other boys deliberately. 

He is the kind of kid about whom people say "He just needs a good whupping."  "Where was his mother when he did that?"  "If I had done that when I was a kid...."

His mom tries constantly to correct him.  She looks tired and discouraged.  She does all the right things.  She seems embarrassed and overwhelmed.

I'm pretty sure he has ODD. 

Like my boy, he is wired differently.

But unlike my boy, his mom can't say "He has autism."  He's not awkward.  He doesn't talk in that stilted way.  He's not in special ed. 

But he can't stop what he does without a lot of intervention.

But meanwhile he and his mom are constantly judged and found lacking.  Bad parenting.  Bad kid.  Bad genes.  Bad seed. 

Different wiring.  No understandi…

Problems Across the Spectrum

I've blogged before about how the perspective having kids that span the spectrum gives me.  Each of them has their own unique problem set, while sharing difficulties that are the base of the spectrum.

The interesting thing is, our oldest is showing us what this is like on his own.

When Sam started out, he was nonverbal.  He did not talk until after 6.  He did not potty train until after 7.  Then he started developing speech, but he never paid much attention to other kids.  He liked having people to tell his stories to, and discuss things (ie. he talked and you nodded and agreed, because interjecting a question or differing opinion was not on the game plan.)  However, he never really had or seemed to want friends.  It didn't seem to bother him that others never invited him to birthday parties or out on group trips.

When he was 12 or 13 he went to a summer day camp at a local church.  It seems a number of kids who went there had their own issues.  When he was told that kids woul…

I'm Getting Angry Now

As an activist for many causes - feminism, people with disabilities, GLBT equality, and adequate medical care for all - it never fails to raise my blood pressure when people say "See!  You're getting angry again.  How can we resolve this if you keep getting angry."

But, you know what?  Anger is a cue that something is going wrong.

And it may not be with wrong with you.

When people are getting fucked over.  If YOU are getting fucked over.  If your child or loved one is getting fucked over.  You get angry.  And you should.

And you should NOT calm down just because those who have the power are telling you to.

You can calm down when wrongs are righted.  When people's rights are not being trampled.  When people are not being fucked over.

You need to call a congressperson.  You need to schedule a sit down with a teacher.  You need to send money to a cause.  You need to put in sweat equity.

You NEED to stop sitting on your duff letting things that make you angry keep happen…

Perspective

So the Lithium hasn't really worked out.  We started decreasing the dose yesterday even before I contacted his doctor.  She had us take the dose down even farther.

Today was better.  He was much more in control through the day.  Less of that crazy cycling in and out of anxiety and agitation.  Tonight, not so much.  He's upstairs screaming and pounding the walls while his dad tries to convince him it's time for bed.  An hour ago.

But I'm grateful for the day.  It's like it was given back to us.  Even with the trouble tonight, I still was able to take him to Costco and Goodwill and out to eat by myself and give Paul time off.

So much of the time I feel sorry for me and sorry for him and sorry for us.  Autism makes our lives so different compared to other people.  There are places we can't go, things we can't do.

Most of the time I don't talk to people about him except in vague terms ("Nathan's doing better (ie. he's not breaking the skin when…

Another Med, Another Failure

It's like dating.  Every time we try a new med on the boys, I think 'Maybe THIS one will help us break through.  Maybe this is THE one.' Not a miracle.  A way to move forward faster.  More communication.  More steadiness of emotional state. 

We've had two med changes recently, one for each of the older boys.

As I've mentioned before, Sam tried a few meds in the past.  None were THE one.  It was just lots of work, time to mature.  He's made so much progress.  But still lots to go.  We do have him on Adderall, to try to help him to pay attention in class.  It works...some.  Really, no big problem behaviors to address so we just keep plugging along.  He's had some more distractability recently, so Dr. Bernie increased his dose when we saw him yesterday.  Sam's grown a lot, time for his dose to grow too. It's hard to tell if it's a summer of too much computer, puberty, meds, or all three.  We've made adjustments to the computer time as well.

Na…

Mom, Get Out of My Way

I am a fixer.  I am overbearing.  I have to hold myself back.  I am a pusher at the same time.  I think I always know how things might be better and tell people.  Especially my kids.

I get on my last fucking nerve.

And I get on my kids' nerves too.

And Sam told me off.

I am SO HAPPY.

Sam was working on a paper the other day and asked a question.  I pulled out a sheet of paper to help him organize his thoughts.

"What is that for?"

I thought it might help.

"Put it back in your book, it's not for me."

But if you organize your thoughts it will be easier.

"Mom, leave me alone I'm doing my homework."

I'm just trying to help.

"Why don't you just stop and be quiet!"  (He really got quite hateful and hurtful at this point.)

You really hurt my feelings and I don't like that.

Time went by.

"Mom, I just want to do this independently."

Sam, I am so proud of you.  Thank you for telling me that.

Looking for a miracle. Still.

Way back in the day, starting when Sam (now 15) was diagnosed, and continuing for about 7 years, we looked for a way to fix our boys.

I know.  I've blogged this to death.

But we tried DAN! - vitamins, supplements.  Avoided gluten and casein and foods with phenols.  I rubbed them with pink cream (B12).  I went to gazillions of meetings and spent thousands of dollars.

We did ABA, VB, RDI.  Bought Floortime videos.  Bought books.  Lordy, I still buy books.  Too many for any one person to read.  Unless I dropped out of the rest of my life.

"Hun, keep the kids alive for the next couple months while I read all these books, mkay?"

Then I turned to conventional medicine.  We thought maybe Sam did his pacing and stimming because he was nervous, so we started Prozac.  Lordy, turns out that was a mistake.  Then stimulants.  Okay, that helped some.  Pacing and stimming go on, because they serve a purpose - they center him and calm him.

Nathan we started on stimulants too.  Because a…

When does it end?

As a parent of a child with autism I find myself wondering "When does this end?"
He's nearly 13. When does he start sleeping?  When does he stop wetting the bed?  When does he start telling us when he needs to pee?  When does he stop flushing washcloths down the toilet? When can we stop locking knives and pills and sweets and tools and powdered everything in the basement?  When can we have more couple time?  When do I get to take time away without feeling that my husband is being put upon?  When does he get time away without me feeling overwhelmed?
Autism often feels like a perpetual toddlerhood with increasingly large kids. I am grateful our sons have learned to use the toilet, because so many I know haven't. But I want so much more. 
I admit much of it is for selfish reasons. 
Although much of it is for our boys too. I want Sam to achieve his goal of driving. Of getting his own apartment. I want Nathan to be able to declare his goals so that we can work to achieve them…