ESY Is Different Down Here

Posted on May 27, 2014 by simpleijustdo

ESY, or Extended School Year, has been a mainstay of The Boy’s summer experience since he was six years old. I have written about some of his experiences in the past, and he always looked forward to it when we lived up north. Last year, he struggled with adapting to a summer day camp which did not include computers, and was not like school very much at all, although he ended up enjoying the experience and meeting some new (and long-lasting) friends.

Before we moved here, I asked some parents with whom I had connected in advance, through the autism society’s local chapter whether or not they knew anything about the local ESY program. They had no idea what I was talking about…

“Uh-oh”, I thought.

When we went through the IEP process this year, the assistant director for special education for the school district was involved (because I was trying to get The Boy into his current program, and being the warrior mom that I need to be to get things done from time to time), and she indicated then that ESY for this summer would be a long-shot. We would have to prove he needed it with data. “I’ve got six years of data backing me up,” I thought.

And this year’s IEP rolled around and his special ed teacher for language arts and math basically explained that even if he did qualify, which she clearly didn’t believe he did, it was very different from what we had experienced up north. Down here, it was basically one-on-one tutoring with an aide for a few hours a week.

“Oh crap,” I thought.

I immediately began to devise activities with which I could supplement his summer camp – was there a computer camp or cartooning lessons I could find somewhere (and could I even afford it)?

The Boy’s program teacher called about two weeks later to let me know that they had determined that The Boy would qualify for ESY this year, because he had had it for so many years, and that they would continue to collect data next school year to determine whether or not he would qualify for the following year.

“Yay… kind of,” I thought.

Now we need to determine where this “ESY” experience will occur, and how often and for how long. Luckily he will have his program teacher, which helps with the continuity. But it remains to be seen how effective this brand of summer enrichment will be toward maintaining the structure and routine that most kids on the spectrum need through the summer months.

Autism and Progress

Posted on April 15, 2014 by simpleijustdo

The Boy earned all A’s this quarter, and I was so proud. I was over the moon, though, when I read his program teacher’s comment that he has made great strides with his social communication over the past two quarters (ever since he has started at his current school).

You see, report cards don’t tell you much about neuro-typical kids, let alone those on the spectrum. Traditional report cards, anyway. They don’t tell you about improvement and progress, they are simply a snapshot made up of a bunch of other snapshots about whether or not your kid knows what the female reproductive part of the flower is, or what an Egyptian dynasty is. Those snapshots do not tell you whether or not your child is making friends, able to initiate a conversation, or independently pack his own backpack. Report cards most definitely don’t tell you those things.

And in an autism household, where we take every day as it comes, and don’t think too long or hard about where The Boy will be and what he will be doing in 10 years, because there is no way to predict, and therefore little practical use in worrying/dreaming about it, I really don’t care if he knows what an acute angle is, or what the word “illuminate” means. I’m very glad he has access to the 6th grade curriculum (and would be fighting the system tooth and nail if he didn’t), but I know how little of it he will actually use in his day-to-day life (because no one really uses any of it in their day-to-day lives, neurotypical nor on-the-spectrum). I am much more interested in that IEP progress report that tells me how he’s doing in terms of counting change, and flexibility with his schedule. That set of stapled sheets that is a report on the defined goals that the people who know him best have set for him for the year is way more important to me. Because the more he succeeds at making progress toward those goals, the more I can plan for his future. Because those skills, the being-able-to-make-a-joke-that-cracks-up-the-entire-band-class-including-the-teacher skills? Those are the ones he’s gonna need when he’s done with school. And those are the ones I care about.

Baby Steps with Showering & Autism

Posted on March 24, 2014 by simpleijustdo

The Boy hates to shower. Well, like most kids he actually loves it once he’s in the water, but absolutely hates the idea of a shower or bath. Compound that with the fact that he is super-sensitive about his body (i.e. can’t take a shirt off in front of me, and wears hoodies like they’re going out of style, even when it’s warm), and we have a constant battle on our hands to get clean. And when puberty has hit, it is imperative for a boy his age to get clean, let me tell you.

He has also not had the skills to wash his own hair, which can be quite the challenge when he does everything in his power to hide his body from you. For a few months, he would take his shower, and then I would wash his hair in the kitchen sink with the sprayer. This became quite the production.

A few weeks ago, I finally decided to show him how to do this, embarrassment about his body be damned. And I can tell you, he is learning. The hardest part is getting him to back up far enough in the shower to get his entire head wet prior to applying the shampoo, and again to get the shampoo out. I stand at one end of the shower, with the curtain held up so I “can’t see anything,” shouting out directions. “Back up! Tilt your head back! Now turn your head to the right!” I’m sure The Man is just shaking his head in the family room listening to it all, but it’s a learning process, and how the heck else are we going to do it? I’ve thought about having him put his swim trunks on so I can climb in with him in my bathing suit, but… Well, I’m not usually up for that after a long day at work, to be honest. And besides, I think this is working.

I’ve also told him he needs to start taking more showers a week, because that’s what you have to do when you turn 12-and-a-quarter…

We’re getting there with baby steps, like usual.

Instruction Manual

Posted on March 17, 2014 by simpleijustdo

By Mestigoit

Whenever the ex re-enters The Boy’s life, I feel like he needs a new instruction manual. He doesn’t communicate all that regularly with him, and even then asks open-ended questions, which are difficult for those in the spectrum. I had to interrupt, get on the phone and remind him that yes or no questions work better and to keep trying when he spoke to The Boy this weekend, because I could hear the frustration in his voice, and could tell he was getting ready to quit trying to engage him in conversation.

When he goes to visit him in April, what will they talk about? He has no idea what The Boy’s interests are, or his friend’s names, or how he likes to spend his time.

Does he remember that he needs time for transitions? Does he remember that raising your voice is risky? Does he have any idea what he likes to eat?

No, he doesn’t. Because that’s what happens when you don’t see your kid for an entire year, and only attempt to talk to him every six weeks or so. That is what happens when you don’t have a relationship with someone on the spectrum.

I worry, but there’s not much I can do. There’s no instruction manual for any of us. Much of parenting is figuring it all out as you go along. Some of us have figured out that building a strong relationship with our kiddos makes things so much easier. Others of us haven’t figured that out yet.

A Peek Into Their World

Posted on February 7, 2014 by simpleijustdo

Yesterday, we had an informal parent meeting with the teacher of The Boy’s program and the county autism specialist to check in, and give some feedback about the program so they can satisfy their grant requirements. Everyone was very pleased, and remarked at what a haven they have created for our boys, and how thankful we were for the program’s existence. The teacher then told us we could look at our kids’ binders where they keep their journal writing related to their social skills class. The Boy hasn’t done much of this because he is the only 6th grader in the program, and therefore doesn’t have much of a social skills class, but the other parents were like little children on Christmas, “Can we really look in their binders??” I watched as they read the entries, pointing out certain phrases to their spouses, all the while reading like they wanted to get to the end of the book before lights out. For parents who don’t often get verbal communication from our kiddos, this opportunity was an incredibly valuable peek into their world.

I’m so thankful for special education teachers who know what their doing, programs that provide what our kiddos need, and opportunities to connect with our boys, even indirectly.

Celebrities and Autism

Posted on January 6, 2014 by simpleijustdo

Jenny McCarthy was all over social media this weekend, because somebody reprinted an old interview, and everyone had something to say about it. I haven’t touched this issue on this blog, and I call it an “issue” because just the mention of Jenny McCarthy divides people in the autism community into very disparate camps. I’ve said before that I think this kind of division can not only hurt our kids, but also any progress we are making in enlightening society, and changing the world for our kiddos.

And truthfully, celebrities can say whatever they choose, not because it’s a first amendment right (because that is not what the first amendment is actually about), but because media and all of society expect them to have something to say on everything, and even if they don’t seek it out (although I’m pretty sure Ms. McCarthy did), sometimes they are pushed to voice their opinions.

Of course, when you do voice your opinions, one must understand that others may disagree with you. And because you are a celebrity, and therefore so removed from real life, they may do so in a less than charming fashion. Even founders of large nonprofits are not immune… ahem…

I’m going to tell you right now that I have not read Jenny’s books (does she have more than one?), nor have I read any entire interviews. I know that she claims to have had her words misconstrued, and misreported. I have heard that she claimed her son had been “cured” of autism, and that now he may have not had autism at all. I have heard that her book contained some outlandish theories about children with autism, something having to do with crystals… (??)… As I said, I haven’t read it. But I’m beginning to think I should.

I will tell you that I believe in science. I believe in the many, many, many scientific studies that have repeatedly found no link between autism and vaccines, regardless of the schedule. I believe that anyone urging parents to forgo vaccines for their children is dangerous to society*, and I believe the CDC, the WHO, and the NIH.

(*Vaccines protect those who cannot be vaccinated, but only if all who can, do: from the CDC website, “Immunizing individual children also helps to protect the health of our community, especially those people who cannot be immunized. These include children who are too young to be vaccinated (for example, children less than a year old cannot receive the measles vaccine but can be infected by the measles virus), those who cannot be vaccinated for medical reasons (for example, children with leukemia), and those who cannot make an adequate response to vaccination.”)

Autism has no cure. It is a neurological disorder, not a disease, and not an epidemic. It is not something from which you “recover”.

Autism is my son, and my son is autism. I cannot separate them, nor would I want to. Many adults with autism feel this same way, and they are much more entitled to be experts in our community than anyone else.

I believe we need to be more careful to whom we give credence.

I believe we shouldn’t allow anyone to divide us as a community.

I believe we need to understand and support good science rather than anecdotal evidence.

I believe that we should be suspicious of anyone making money off of autism.

Custom Built Bed for my Hypo-sensitive Boy

Posted on December 26, 2013 by simpleijustdo

The Boy is often hypo-sensitive, meaning he needs more sensory input than is typical. He rubs his shoulder on the wall as he walks down the hall, loves big hugs, and could spend all day in the water if we let him. He needs that extra input on his skin to be able to tell where it ends. Part of this is that he likes to be under blankets, and in enclosed spaces, as many on the spectrum do, and has taken to hanging out in his closet to achieve the desired effect. No problem except that he is getting bigger every day, and his closet is not.

I mentioned the other day that The Man had designed and was custom-building a bed modeled after the Captain’s bed style, so that The Boy could have an enclosed space under it in which to hang out. Here is the (semi-) final result:

I say “semi” because, as you can see, the shutter door has yet to be attached on the end. The Boy chose the color, and would like the door to be painted the same color, but alas, it is made of plastic, requiring special paint, and well, there’s only so much time in the day. Some of you IKEA fans, may recognize the dark long piece with drawers that acts as a step and added storage that can be accessed from both underneath and the front of the bed. It is from the Expedit line, and we used it for sorting the recycling at our old house. It provides much needed additional storage in The Boy’s new room design. We got rid of the box spring, and his mattress sits on top of slats, allowing for extra head room underneath.

The best part is that The Boy loves it. It really is nice to have a husband that fulfills his promises and is incredibly handy.

Is it Time to Call a Spade a Spade?

Posted on December 19, 2013 by simpleijustdo

I described the ex’s latest cancellation the other day, and The Boy’s reaction. I am always the one who has to relay the news to The Boy, and I am the one left to field questions to which I have no answers. I am the one to deal with the acting out that quite often happens after one of these cancellations.

The ex will never change, but does that mean I shouldn’t try to show him what he’s missing, and what he is doing to our son?

English: : A mirror, reflecting a vase. Españo...

Time to hold up a mirror so he can self-reflect?…

I’m thinking of sending him a text (he doesn’t even access his email, and I don’t want to get into it with him on the phone) to point out that he hasn’t seen his son in eight months, and to ask him to imagine not having his own dad around for that long a time period. Explain that I understand money is tight, and that he has a hard time taking work off, but that if he saved a bit out of every paycheck, and told his boss months in advance (instead of days), he might be able to swing it. Ask him to stop “trying” to make plans and only tell The Boy he will see him when he is sure he can. Point out that his son is sad and angry at him, and that he deals with this by acting out, often at school.

He will undoubtedly get angry and not speak to The Boy for months after I send it, because that is his MO. But I feel I have the right to ask someone who continually hurts my son to take a moment to realize he is doing it, and to please stop.

I know he won’t change, but there’s a chance he has simply not given a thought to the effect of his absence and broken promises on his son. And if there’s a chance, it’s worth trying, right?

Some Autism Lessons in ‘Frozen’

Posted on December 16, 2013 by simpleijustdo

Yesterday, I took The Boy and one of his buddies to see the latest Disney movie, “Frozen.” (***SPOILER ALERT: If you haven’t seen it yet, this post does contain spoilers, so come back and read after you’ve seen it***) While I watched, and endured the entire row of middle school girls who decided to sit behind us (*gag*), I realized Elsa was going through very similar experiences to many kids on the spectrum.

She wanted to be around people, and to be close to her sister, but knew they wouldn’t understand, and didn’t want to hurt anyone.
When she finally allowed her emotion to show, there were some people who actually were hurt (more than once), because she couldn’t control it.
When she was able to get away from the castle (and other people), she was able to see how beautifully her powers could transform her surroundings.
Through her sister’s love, she was able to realize how to use her powers for good.

And I thought what a great message this movie had, and how powerful for our kids on the spectrum to see it, and possibly identify with the “bad girl” who wasn’t really bad, just misunderstood. Evolved fairy tales are my favorite. Girls who save boys, people who solve problems using minds not weapons, and the replacement of an “evil ice queen” with a young misunderstood girl with special powers both dangerous and beautiful. Yep, this is the kind of fairy tale I want The Boy to experience.

Use Your Words

Posted on December 9, 2013 by simpleijustdo

Tomorrow is The Boy’s birthday (Just FYI – there will be another birthday related post tomorrow. Birthdays are a big deal). Today’s post is about verbalizing. The Boy is verbal. In fact, if he is speaking about interior dome lights in cars, he is downright verbose. But he is not always verbal about what he wants and needs, nor is he verbose when asked direct questions. This is fairly common with autistic kids. They can tell you every plot point of the latest Disney movie, but ask them to make up a story and you are met with complete silence.

The Boy has always been this way. When he was younger and Webkinz were a thing, he would receive a new one for his birthday or Christmas, and could not come up with a name. They were often named whatever the first suggestion I offered was.

Tails added to “the list”

He will tell you what he wants (in terms of toys, games, etc.) while in the store, when they are staring him in the face. This is why we came up with the strategy of taking pictures of them with my phone and putting them on “his list”. This helps us get out of the store without having a meltdown about not purchasing what he wants then and there. And you may be thinking, “Great! Then you know exactly what he wants when it comes to birthdays and Christmas, because you have pictures of them right there on your phone!” But often, he never speaks about those things again, and I am left to wonder whether he really wants those things, or whether he was just attracted to them at the time. Was it true love or was it just lust?

Therefore, I did a mental double-take last week when we were at the store last week, and he saw some fleecy sleep pants he liked. He pronounced, “Mom, you could get these for my birthday! I want these for my birthday! Take a picture!” He repeated some variation of these three phrases for a couple of minutes, and I think he was as excited as I was that he had verbalized his want for something specific for his birthday.

A couple of says later, I casually asked, “Do you still play with your Bionicles?” He said, “Yes, I do. You could get me a Bionicle for my birthday, too.”

It may seem like a small distinction, but it was huge to me. He has never before asked for something specific for his birthday, and he continually amazes me by making these small (but huge) steps toward independence.