George is three. And George is. . . George. He really defies definition. He’s sociable and friendly and has a funny sense of humor (for a 3 year old, anyway). Most people who meet him have a hard time believing that he has an ASD diagnosis. But . . . George.

George holds himself together really well in public or school settings. He very rarely tantrums or has meltdowns where non-family members can see him. At home, though, it’s a different story.

Generally, when he starts throwing a fit about something, we just remove him from the situation, he’ll take a couple of minutes to calm down and then come back completely fine. Logic works amazingly well with him. For example, if he’s insisting on X bowl, but X bowl isn’t available, then you tell him that he either uses Y bowl or doesn’t get breakfast. He’ll bitch about it for a few minutes, then cave. Hey, it works.

The other night, though, things got bad and I think we had a little bit of a breakthrough with him.

It was dinner time and we gave George first pick of which chair he wanted to sit in. He picked and took his spot. Simon sat in the chair next to him. George, who has his feet firmly planted in the “me, too” phase, immediately insisted he wanted Simon’s chair.

Well, George, no, Simon is sitting there. You picked THIS chair. This is George’s chair tonight.

He went ballistic. He knocked his chair over, was picking up toys off the floor and throwing them, and screaming. He stomped out of the room and stood in the hallways just howling. And it wasn’t a typical tantrum scream, either. I’m talking a sustained high-pitched scream like someone was cutting his arm off. It was . . . Intense.

I got a hold of him and took him to the couch, where I held him and patted his back while he kept screaming. Anytime I would speak, he’d scream and kick. He didn’t want to count, which is usually a good way to defuse him. He didn’t want the ABCs. I finally started singing “Puff the Magic Dragon” and he slowly started to calm down.

“I so scared. I so scared.” That was all he would say to me. “I so scared.”

That’s when it occurred to me that his emotions at that point were SO big and SO intense that he was scaring himself. He couldn’t control it and that terrified him.

Unfortunately, he didn’t qualify for ABA therapy at school and, as I’ve mentioned before, private ABA is nearly impossible for us to get for the boys. So, we’re flying solo on this, trying to figure out how best to help him.

He’s only three. That’s a hell of a burden for a little guy.

Recently, I talked about Simon’s apraxia and the challenges it can present sometimes. Play titties! Well, he’s got me stumped again.

This time, I don’t think it’s necessarily apraxia, but rather some connection in his mind that makes perfect sense to him that I’m just not getting. Here we go:

Simon likes yogurt. It got to the point where I was just buying the big tubs of strawberry greek yogurt for the kids since it was cheaper than buying tons of individual one. Right?

Well, a couple of weeks ago, the store had some Chobani yogurts on sale, so I bought some for me. FOR ME. Mine, damn it. I got peach flavor. Back off, kids. “Oh, Mother, you are in such denial. We shall eat all of these yogurts and there will be none left for you.”

At home, Simon immediately grabbed one and handed it to me. “I want water bottle.” Say what now? Here, have a yogurt.

He’s now refusing to eat the yogurt from the big tub and will only eat Chobani yogurts. Whatever, he’s eating. Here’s the thing though…

He can correctly tell you every flavor of yogurt we have, except for peach. Peach Chobani yogurts are “water bottle yogurt”.

For example: “Here, George, you get raspberry. I get water bottle.”

It only happens with peach as far as I can tell. And I’m pretty sure it’s only Chobani brand, although I’ll test that at the store on Friday.

Water bottle yogurt. I have absolutely no idea what the hell this means.

No, really, it is. February sucks, at least around here. Especially this year.

There are 20 weekdays this month.

The boys only go to school on Mondays, Tuesdays, Thursdays, and Fridays. So, that brings us to 16 possible school days.

There is a three-day weekend where they have a Friday off. Down to 15 days of school.

(It also bears mentioning that they had Monday, January 30th, off, too. So there were only 3 school days the week that February began.)

There is a full week off for mid-winter break. Down to 11 days of school.

Then, to make matters oh-so-much-better, we just had two snow days earlier this week. Down to nine days of school.

Just nine days of school for the boys this month, barring any further illness or weather related closures. (By the way, I’m still counting the day last week where I had to pick them up early because George was sick.)

Nine days of school for Simon who is so routine driven that this is throwing him into a tailspin.

Nine days of school in this month that simply will not end.

 

ninetimestext

Fun With Apraxia

I had originally planned to title this posting something completely different, but was afraid that search engines might lead some unsavory individuals to this blog. You’ll see what I mean in a moment. For now, we’ll just call this ‘Fun With Apraxia’.

With his apraxia, as I’ve mentioned, it’s sometimes very difficult to understand what Simon is saying. He’s very deliberate with his speech, but he just can’t get the words to come out properly.

For example, over the summer, he was walking around saying, “I want trainsick. I want trainsick.” It was very obviously ‘trainsick’ and he would get really frustrated and cry when we didn’t give him ‘trainsick’. It wasn’t until weeks later when he grabbed my hand, pulled me over to the snack cabinet, said “I want trainsick”, and pointed at a box of… Triscuits. Trainsick = Triscuit. Alrighty then. Gotcha. Have a Triscuit, my son.

Fast forward to shortly after the school year started. Eleanor brought home one of those Scholastic book order forms. Remember those? I loved those as a kid!

Anyway, Simon was sitting on my desk looking through the catalog and started pointing at random things and saying…

Okay, folks bear with me here…

I’m still laughing about this…

“Play titties.”

He was very excited about the ‘play titties’. He kept repeating it over and over again as I rolled on the floor howling with laughter. Finally, he moved on to other things and I began to breathe again.

This continued to happen periodically, but not always with Scholastic book orders. He’d be reading something and would suddenly burst out with “play titties”. We never could figure it out. I even asked George’s speech therapist if she had any ideas and she was baffled, too.

Until a week or so ago. He was, once again, looking at a Scholastic order form and started pointing at something. “Play titties! Play titties!” I looked at what he was pointing at and something finally clicked for me. I grabbed a notebook and wrote a word. I showed it to him and he beamed. “Titty!”

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Activity = titty.

Play titties = play activities

I cracked the code. I figured it out. I spent the next couple of days charging around the house, screaming “play titties!” at random times.

It has become my new battle cry.

“PLAY TITTIES!”

 

I love buying things for my kids. Like, really, REALLY love it. And right now is an especially fun time, because not only is Christmas coming (we celebrate secular Christmas), but we also have George’s birthday in early January. Lots of opportunities to give gifts to my kiddos, right?

Not so much.

Eleanor is not a problem. I can find tons of things to get for my girl who loves dolls and geology and space and reading and, well, LIFE. I’ve already gotten her so much for Christmas that I am going to have to keep some of it back and save it for her birthday in May. And, oh, she is going to be so butt-hurt when she doesn’t get the giant Elsa doll!

The boys, however, are a different story. I never know what to get them for Christmas or birthdays.

The train table and car ramp last year was a big hit, but I am thoroughly stumped by what to get them this year. I’d love to get them a sensory swing, but we live in a rental house, so hanging things from the ceiling joists would probably be frowned upon. We already have a trampoline.

And that brings up another point: the guilt that I feel in always thinking about sensory or therapy gifts for them, instead of just toys.

Which then leads to the guilt that they don’t even understand Christmas and will probably find it pretty overwhelming (at least Simon will), so why I am stressing so much over this?

Because I’m a mom, that’s why. That’s what I do. I stress.

And I still have no idea what to get them for Christmas.

 

(Side note: I’ve finally started my author web page at allisonwaltersluther.com. You should go check it out.)

When we first moved up to Washington, Simon had already been in Early Intervention in San Diego for a couple of months (I’m actually still in touch with his speech therapist from  back then). Within a week of arriving here, I was on the phone with a new Early Intervention provider and had Simon started with his first evaluations in September of 2014. He had just turned two and George was just eight months old.

Now, 27 months later, our Early Intervention journey is coming to an end. Simon, of course, aged out when he turned three last year. George will be turning three in early January, so we’re in the process of finalizing his transition from Early Intervention to the developmental preschool through the school district, where Simon is currently enrolled.

It’s all very bittersweet. Between the two boys, we’ve had three speech therapists, three OTs, and more Infant Educators than I can even remember (at least four, maybe five), plus George’s in-home ABA provider and assorted assistants and co-op teachers. Nearly every week except for holiday breaks, we’ve had at least one therapist coming to our house to work with our boys. And now those visits are going to be stopping. (Well, Simon still gets in-home OT, but it’s not through the Early Intervention company and I’m not real thrilled with it anyway, so…)

The thing is is that I would love to have them still be able to have in-home therapies, especially in-home ABA, but because of their insurance (Medicaid), the waitlists are astronomically long. Years long, and I am not exaggerating that at all.

I’m feeling very stressed about the boys’ futures right now in general. I am terrified about what is going to happen to their insurance and their education under the incoming presidential administration. I am scared that I am not going to be able to get them the help and the services that they need in these formative years. I’m just really scared.

As we prepare to move Georgie into preschool, I find I’m surprisingly emotional about leaving the Early Intervention nest once and for all. We are going to miss the therapists a great deal. George, especially, is going to take the loss of his ABA therapist particularly hard. Both boys did so great in EI and Simon is doing great in preschool, but I am worried about how George is going to do away from the EI safety net, because he is such a unique child and hard to categorize.

Anyway, just very worried and emotional right now. It’s a hard transition. George will handle it with all the exuberance and temper tantrums that we’ve come to expect from him. I, however, am not handling it as well.

In a random Facebook post the other day, I stumbled across a phrase that *figuratively* sent me into a tail spin.

Instead of saying “I was diagnosed with autism” (emphasis mine), it said “I was identified as autistic”. That blew my mind.

Think about that for a minute. The word ‘diagnosis’ seems to carry connotations of ‘disease’ and ‘disorder’. That there is something wrong. Something to be fixed. Cured.

To many in the autism community, autism is NOT something to be cured. It is not a disease. It is an intrinsic part of who they are, or who their loved one is. So why do we refer to it as “being diagnosed”?

Now, to be fair, autism is included in the DSM-V as a diagnosis and in the medical and insurance fields it is also referred to as such. This is by necessity, to some extent, as funding for services is often tied to that diagnosis. And it is, after all, called Autism Spectrum Disorder.

But in everyday, idiomatic speech? Why not refer to Simon and George as being identified as being autistic? After all, they’ve been autistic their entire lives, right? It wasn’t until they were two that they were identified as being on the spectrum. That’s a huge breakthrough for me.

(I also want to note that homosexuality also used to be a diagnosis in the DSM. Of course, we now understand that being gay is not an illness or disorder, but is, in fact, just part of who a person is. Maybe someday, autism will also no longer be marked as a disorder.)

There is also the question of are they autistic or do they have autism? Do you see the difference?

People choose to identify differently for different reasons. Some people use “has autism” because they feel that they (or their loved one) are such much more than autism, much like a person with diabetes is so much more than that. Others, including a large number of autistic adults, prefer “I am autistic” or “S/he is autistic”, because it’s an integral part of who they are.  Others prefer “on the spectrum”, although I have found that can be problematic when talking to people who aren’t familiar with that phrase (or familiar with autism at all) and ask ‘what spectrum’ and then you’re back at square one. Other people don’t talk about autism at all in daily conversations.

Personally, I often switch between “Simon is autistic”, “Simon has autism”, or “Simon is on the spectrum” (when talking to educators and medical personnel), depending on who I’m talking to.

But, in reality, autism is not something Simon (or George) HAS. It’s part of who they are.

So, yeah. My boys weren’t diagnosed with autism  They were identified as being autistic.

It’s a world of difference. Semantics can be funny things sometimes.

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