Mutterings Of A Mindless Mommy » Asperger’s

Asperger’s Syndrome, Transitions, and Meltdowns

Melissa — Sun, 14 Mar 2010 21:11:48 +0000

It has been a long time since my son has had a meltdown. He’s 8 years old now and has been diagnosed with either PDD-NOS or Asperger’s Syndrome. There are mild nuances between the two diagnoses but we just say “Asperger” or Aspie because more people understand that than they do PDD. Anyhow, yesterday during a big transition Alex had an equally big meltdown.

Yesterday, all four of us went to the store to buy bikes. Alex received a bike when he was 3 or 4 and didn’t have much interest in it. He has enjoyed his scooter and Ava enjoys her. However, I’ve been thinking about how much I enjoyed running around the neighborhood on my bike as a child. I don’t want the kids to miss out on that so it was bicycle buying time – for all four of us!

Thanks to an emergency trip to the store by my dad (I woefully underestimated the space that bikes would take up in our vehicle), we made it home with bikes in tact. I had not been on a bike in over a decade and hopped on it and tooled up the road and back real quick. You really don’t forget.

Alexander hopped on his bike, yes it has training wheels, and was right behind me. Before he had a difficult time coordinating all the various movements to ride a bike but he had it down. Ava hopped on her very first bike, ever, and quickly got the hang of it. Daddy took up the rear and we were off.

After about 1.5 hours and with the sun about to set, it was time to go in the house. I had given Alex a bit of a warning but evidently that wasn’t enough. Transitioning out of a super fun activity into the nighttime routine is huge for him and he quickly entered a full-blown meltdown.

I felt bad for the lil guy and we eventually calmed him down (gotta love showers). Surprisingly, about an hour later, Alex came up and apologized to both Dave and I for his meltdown. This is huge! Not that I felt he needed to apologize to me, but the fact that he felt that his actions weren’t productive and he acted on his feelings. I

I’ve never been the type to force apologies from my kids. If you tell your child “Say you’re sorry” but they aren’t sorry, then it is a worthless apology. Instead, when I hear my kids say, “I’m sorry”, I know that they truly are.

Alex has grown a lot in the past few years, so much so that I forgot about the rough transitions we’ve dealt with in the past. This was a quick reminder that Alex still has a wee bit of trouble with transitions and I know that next time we go from having fun riding our bikes to coming in for a shower, we’ll both be better prepared for the event.

Ohio State ASAN Chapter Trying to Get off the Ground

Melissa — Fri, 01 May 2009 04:38:03 +0000

The Ohio State chapter of the Autistic Self-Advocacy Network (ASAN) was originally formed in late 2008 but the group is trying to get the organization off the ground and up and running. An article appeared in today’s edition of The Lattern – Autistic students self-represent.

A big difference between ASAN and similar organizations is that it is a self-supporting organization where autistic members holding power.

“We’re an alternative organization. We’re especially concerned with self-advocacy and issues of representation, and issues of speaking for versus speaking as or speaking with,” Yergeau said.

Perhaps the group’s biggest break from the norm of other autism organizations is its anti-cure stance.

Read the entire article on The Lantern.

Summer Plans for Children with Autism

Melissa — Wed, 29 Apr 2009 03:45:10 +0000

So summer is nearing and I’m dreading the transition. I know that all kids can have a rough transition from school to summer (and then again from summer to school) but my kids have some major issues. My daughter graduates from preschool next week – it is so great to see where she was when she first started preschool three years ago and where she is at now. She has been in the same classroom, with the same teacher and the same paraprofessionals for all three years of preschool. Next year she will be at a different school and she’s nervous. She told me last week she didn’t want to go to kindergarten. She knows that once preschool is over, she has summer break and then she knows new school, new teacher, new classmates, etc.

My son is who is most affected by transitions. School doesn’t let out until May 21 and I’m trying to come up with some ways to make the transition easy for him. One of his compulsive behaviors is picking a spot on his scalp. He’s done this for about a year and a half and has avoided infection all this time – until this weekend. Sunday evening it hurt and was a little red. It turns out that he has a MRSA infection. The good news is that because it is super tender, he isn’t picking at it. The bad news is, once school lets out he is likely to go to town on it. I’m hoping that I can come up with a way to ease his transition and maybe give him something else to do besides pic his scalp.

Right now, I’m not sure if we’re going to do anything organized for the summer. The problem with camps and other activities like that, especially for Alex, is that he is a nervous wreck prior to the start of the program and then he has a hard time transitioning out. If we just have laid back summer of fun with family then there aren’t additional transitions. However, he doesn’t always do well with unstructured time.

Sooooo, what are you all planning this summer for your kiddos that are on the spectrum?

Photo by Dan4th

Brushing His Teeth, Tying His Shoes!

Melissa — Thu, 16 Apr 2009 01:19:27 +0000

It has been a very hectic several weeks in the Mindless Mommy household. My sweet little guy is growing up! He’s 7.5 and has started to brush his teeth on his own (I don’t care how well he does it, but he’s doing it on his own!) and he can tie his shoes now! I’m proud of you Alex!

Cale from Spectrum Siblings’ Message to Parents

Melissa — Mon, 23 Feb 2009 00:05:21 +0000

I have had the fortunate opportunity to virtually meet a rather charming young man, Cale Irwin, via Twitter. Cale blogs at Spectrum Siblings about how he copes, loves and thrives as an Aspergic teen. I asked Cale if he would submit a guest post for my blog and what he has written is a great message for parents and perhaps a glimpse into the future for many of us.

I sat down to talk to a professor lately about doing some summer research. Here were her requirements for lab assistants:

1) A complete devotion to the topic. A willingness to devote 4-6 hours daily to combing the literature and taking copious notes.
2) A willingness to forsake Friday and Saturday night parties to come to the lab to work.
3) An ability to spend work periods isolated from social interaction; i.e. not texting, calling, or inviting over others while working.
4) An acute memory for detail; an ability to notice slight changes in the appearance or behavior of the rats.
5) A strong sense of cleanliness and a need to return everything to its proper place when research is completed.
6) An ability to convey information in a factual and direct manner.

Why is this relevant to you? Because the professor could have said “I want an autistic student” and would have conveyed the same needs.

Many autistic characteristics seem to stand in your son or daughter’s way when attending preschool through high school. You worry about things like, How can I help him broaden his interests? and How do I get her interested in her peers? and When will he stop fixating on that pendulum and look at how cool the clock is as a whole? And these are problems in a school which offers 9 different classes a day, including one specifically devoted to interacting with peers (i.e. recess).

But in college, and the world of research, these traits stop being deficiencies and become advantages. Employers will scour the applicant pool looking for kids just like yours; kids with their unique blend of talents and idiosyncrasies that will perfectly match the need of the company or institution.

When the diagnosis of autism first comes down, many parents are crushed. But that’s partially because they’re only looking at the here and now, at how their child is different from most and how that creates a chasm between them and their peers. But with time, they’ll begin to see that this separation runs both ways; that what the autistic child might be lacking in social graces the neurotypical child is lacking in perceptive ability and dedication.

One of the keys to understanding autism is to look at the world from a new perspective. And when examining the capabilities of your autistic child, this change in perspective is exactly what’s called for.

Cale can be found on Twitter @Frogger11758.

ASAN’s Recommendations to President-Elect Obama

Melissa — Fri, 09 Jan 2009 08:49:52 +0000

Although I am not on the autism spectrum myself, I am a fan of the work done by the Autistic Self Advocacy Network (ASAN). On Friday, January 2 members of the Autistic Self Advocacy Network met with members of the Office of the President-Elect on Autism Policy to discuss autism policy priorities for the coming year.

The top three priorities listed in ASAN documents are:

1. Supporting and empowering autistic adults
2. Ending school abuse and ensuring a free and appropriate public education for every student
3. Balancing the research agenda in support of quality of life

While I agree with all three of these priorities, I am elated to see the call for balanced research on the list. There were many other ASAN recommendations made in the four page document.

Other organizations represented at the meeting include Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America.

Is a Mostly Liquid Diet Really That Bad?

Melissa — Wed, 07 Jan 2009 02:12:37 +0000

So Alexander is taking in mor calories – in the way of a nutritional drink. It’s calories though, right?

Here’s a copy/paste of a response I left on the Weight Loss Crisis thread:

Right now our interim solution is something called Boost Plus. He likes the vanilla and says it tastes like chocolate. They are 360 calories, have 14g of protein and a host of vitamins. He’s drinking one at breakfast and one at dinner now so we’re guaranteed 720 calories.

He was drinking them alongside a normal meal but now he’s dropping food and basically doing a liquid diet except for lunch. He’s regained a few pounds though – so we’ll cross the “eat more food, drink less Boost” bridge when he gets a few more pounds on him.

I’m also awaiting a referral to a pediatric GI doc for him. Which reminds me, I have to go to the lab to get the stool sample kit – that is so going to be daddy’s job!

We Are in a Weight Loss Crisis

Melissa — Fri, 26 Dec 2008 04:54:59 +0000

Alexander’s weight is plummeting. He lost four pounds in three weeks so we went to the pediatrician last week. Since then he’s lost another pound. He’s not hungry and when he eats he says his stomach hurts so the doctor wants us to try Zantac for 1.5 weeks to see if it gets rid of the stomach pain and ultimately allows him to eat more.

We have an order for blood tests including a complete blood count, comprehensive metabolic panel and two different thyroid levels. I didn’t want to taint his first week of Winter break with the trip to the lab so we’ll go next week, probably on Tuesday. Last time we had bloodwork done he was OK until shortly after the tech called his name. He walked halfway to the doorway and then freaked and turned around and sprinted into the parking lot.

I was able to catch up with him and we got him into the room. As soon as the tech placed the little butterfly needle he immediately calmed down, giggled and said “Oh, that’s it?” I reminded him of that so hopefully next week won’t be as rough.

As of this morning, he is 40 pounds and 47 inches tall. He’s seven. According to the CDC BMI Calculator, this puts his BMI at 12.7% which is under the 1st percentile for boys his age. When Alexander turned five, he was 38 lbs. He was about the same at six. At seven he was 43 lbs and a month and a half ago he finally reached 45 lbs.

What we’re faced with now is constantly asking him to eat, drink a smoothie, drink a Boost, etc. If we don’t say anything, he just will not eat. Not only is he not eating much, but he’s started to cut out what were once acceptable foods. He used to love smoothies with fresh fruit, now the texture of the fruits drive him crazy. He no longer eats strawberries, cheese and some nuts. He has started to turn down my offers of a trip to the ice cream parlor even – this boy loves ice cream, especially strawberry ice cream with bananas mixed in. Not any longer.

I’m starting to worry about my little guy…really worry about him.

Denis Leary – Our Kids Aren’t Autistic, Just Stupid

Melissa — Wed, 15 Oct 2008 15:56:52 +0000

Denis Leary is, and has always been, an ass in my book. He’s not a funny ass – he’s just an ass. In his new book, he is evidently trying to speed up his rise to the throne as the King of Asses.

“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a what these crackerjack whack jobs tell you – yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

Okay so my autistic son with a gifted IQ is stupid? My autistic son who’s lowest score on his 1st quarter report card was a 94% is stupid? My autistic son who hasn’t missed a spelling word since spelling tests started over a year ago is stupid? No Mr. Leary – your negative ass is stupid.

Hyperlexia: A Literary Journal Celebrating the Autistic Spectrum

Melissa — Thu, 24 Jul 2008 04:20:55 +0000

Hyperlexia: A Literary Journal Celebrating the Autistic Spectrum is looking for your fiction, poetry, and personal essays. Our inaugural issue is planned for October 2008. Send submissions to submissions@hyperlexiajournal.com and please include the full text of your writing in the email if you send a PDF or a Word file. Deadline for submissions is August 31, 2008.

Hyperlexia is interested in honest, thoughtful, well-written poetry and prose about being autistic, and loving someone with autism. Our journal is a celebration of real life with autism, both the good and the bad. We want genuine and truthful writing about autism. You can be serious, sad, or funny. We believe in respecting the diversity of the human mind and discriminatory writing or hatred of any kind will not be published. Submissions should be 1500 words or less.