Program Reviews, Spitting and Another Tearful Night: "I don't want to go to school"

Quick redesign which I think is hopefully better.  And I have been neglectful to this blog, YET AGAIN, but Lord has life been busy!  Had a bad week, to say the least.

Leading up to this awful day, I got a note home from the teacher a week or so prior (a "behavior" note).  Two things were indicated.  One, "cannot complete individual work independently" (hello, have you heard of say, AUTISM?!?).  Second, "can't get along with peers" (or something to that effect).  My gut reaction to both of these is (1) is my child being punished for a having a disability (mild or not)?  and (2) what do they want me to do about it?!?  Welcome to the world of JIMMY!

Jimmy a few weeks ago watching his cousin at a football game.
He enjoyed himself tremendously!

The worst was the note I opened a couple hours ago (another "behavior" note).  This one was a little bit more of a legitimate behavior--spitting at a classmate.  The teacher also included with this note a sentence about how Jimmy has been very defensive and not "cooperative" with classmates.  Jimmy was upset that I read the note, and the already tense situation with his homework he'd been working on just got even worse. (It didn't help that is was homework he should have done on Thursday).

He can have very severe mood swings which have tendency to get me moody, too, despite the fact I'm trying to help him cope with homework and the emotions.  Anyways, he had a little meltdown.  It seems to be me that his brain and hands quite often don't seem to "connect well" and he writes what he doesn't mean to and when he's really agitated, he'll correct things over and over again).

Anyways, he blurted out to me something like "nothing works!"  And I asked if he meant his homework, and he said in effect no, everything is that way (he said this with tears and was very upset).  Needless to say I choked right up and for almost two minutes I had to hold back tears and swallowed hard, because I hate to see him so sad and couldn't at the moment provide him any real comfort.

The dragon "Toothless" from
How to Train Your Dragon and this is from a scene
that Jimmy just LOVES

We got the homework done, so we settled down to watch "How to Train Your Dragon" for the gazillionth time!  The one dragon, Toothless, reminds both of us as a big adorable cat, and it's something we bond over (I love dragons and sci fi so it's no wonder why I love it!) for a couple weeks now since it came out on DVD.

Thankfully he fell asleep pretty early (rather one time due to the time change).  The last two months have been pretty hard on him.  Not only is he coping with change (I think most people understand how much routine and sameness are so important to autistic kids), he has two teeth starting to come in, although no fevers, etc.

I have a parent teacher conference in two weeks and a program review (GULP) the same week.  He is due for a triennial review.  I always get real real nervous before these things, and while I mostly get the results I expect, and I also get reaffirmation that Jimmy is indeed different.

Communication for kids with mild disabilities can be hard

Jimmy on the first day of third grade.

Jimmy said the most interesting thing to me tonight.  He was really frustrated. Frustrated in writing a simple word in his social studies homework and had a meltdown.  Finally, he blurted out "everything is different!"  I asked, "what exactly is different?" And he replied "everything around me is different!!"  He said this with tears in his eyes.  I asked if it was that things were "different" or that things were "hard"...he admitted that things were hard. We took a break from homework and then came back after a spell, and he felt better and got it done, although he wanted me to be there with him when he did it.  But this was a real moment of true communication for him. Third grade is hard. Difference is hard.  Transitions are hardest of all. 

New National Autism Clearinghouse In The Works

As reported in Disability Scoop:

"A handful of disability organizations are joining forces to establish a national resource center to assist people dealing with autism and other developmental disabilities, a new initiative known as Autism NOW: The National Autism Resource and Information Center will be established by The Arc in collaboration with the Autistic Self Advocacy Network and Self Advocates Becoming Empowered with the help of $1.87 million awarded by the Department of Health and Human Services this week. Autism NOW will be tasked with helping people connect with services and interventions in their own communities. A key feature of the new center, organizers say, is that self-advocates will be integral in forming and operating it.
“People with ASD and other developmental disabilities face significant challenges in accessing the supports they need,” said Commissioner Sharon Lewis of the Administration on Developmental Disabilities, a division of the Department of Health and Human Services which approved the funding. “This new center will serve to connect people with ASD and their families to services and activities that promote self-determination, independence and inclusion in the community.”
SOURCE:  Disability Scoop

When Autistics Grow Up.... Why Not Ask Them?

Why not ask autistic people
 what their lives are like?

I just read a great post on the FWD blog: "Today in Journalism:  Autistic Adults Need Not Comment." 

In this entry, s.e. smith writes about what is really a concern today:  there are many conversations today about autistic children growing up and how parents need help to cope.  Doesn't every parent need to cope?  But she quite appropriately points out, this is just another example of talking about someone (autistic adults and their lives) and instead focusing on what autistics have to say.

Granted, some autistic people can't communicate in the way that some people can (some use different modalities--for one great example see Amanda Baggs' video "In My Language." Excellent), does that mean their opinions, voices, etc. don't count?

Another blog, after a Google search, writes about her son's struggles from her perspective as a mom, she talks a bit more realistically, but would like to find a blog by an autistic adult talking about these things and share that instead.

In closing, I did a quick Google Search for "autistic people talk about growing up" and there were 176,000 results, but the first results don't appear to be written by an autistic person, although a link to WrongPlanet.net came up as the second result, but after clicking on this link, nothing specific appeared just their home page.

Of course every parent may have something to say about their child's life, autistic or not, but as they age, shouldn't their perspectives become more important?

Struggling to write a description..

...but I came up with this really neat Wordle:



Okay, "Wordles" are not very accessible to screen readers, but it is a neat idea to take a series of words and represent them graphically.  My purpose in creating this was to describe what the posts will be on this blog.  Feel free to share, repost, etc.

What the heck do I mean by "Scarlet Letter Mommy"?

Scarlet Letter Mommy refers to Autistic Motherhood which is actually more like motherhood of an autistic child.  Another meaning of Scarlet Letter Mommy refers to the connotations of having a child “labeled” mildly autistic.

Autism, like any other part of the human condition, is experienced in different ways by different people.  Some people are “high-functioning” and are able to function (or "pass") in the neurotypical world.  Many of these people are saying that this is the way they are and neurodiversity must be more accepted and understood.  Others are more profoundly autistic.

While some of what I experience with my son is just plain old motherhood (I am the mother of an only child), so I have to stop and think more about some of things that my son does or says—is it autism or is it a normal little boy revolting (“I want a new mom!”)?  How do I know the difference?

Well, I’m getting better and better at recognizing it.

Diving right in

For as long as I can remember, I've been a collector of all things autistic/autism. I helped my dear friend Nan Songer organize the huge amounts of information she had (several large size 3-ring binders) and now as I am the mother of a HFA child, I keep my eyes peeled for new things, good or bad.

One of my latest endeavors was to start a Google Scholar alert for "autistic culture" and this entry arrived in my email today:

http://www.statemaster.com/encyclopedia/Aspergian

Talk about expansive! But really, how serious can I take any page that has a block ad for DirecTV (highlighting the NFL no less) right after the header "Prevalence."

And I really wanted to see what Hans Asperger looked like (this page had an outdated link I guess). So a quick Google check and I found him! See picture at right.  Knew the name but never saw the face!  Now if I can just figure out how to add captions to photos or at least alt text in this blog, things will get better.