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.)

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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.

I’m a writer. That’s what I do. I write. Stories. Blogs. Grocery lists.

I started this blog in, what, January 2015? More than a year and a half ago now? Wow. Okay.

Anyway, I started this blog for lots of reasons, really. We were just a few months into Simon’s diagnosis and I was trying to come to terms with that. I probably still am, truth be told. I had also just had a run-in with someone in an on-line group regarding autism and I was needing to vent. I was hoping to share our story and maybe help educate people. But I what I was really needing was just to find a way to process my own feelings about what his diagnosis meant for our family. So I wrote it all down.

And you know what? It helped me. Tremendously. I pissed off a bunch of people in the beginning. I lost a few on-line and real-life friends because of how I remembered events happening and how it made me feel. Whatever. I wasn’t writing for them. I was writing for me. And it made me feel better. Putting it all out there helped to lift some of the weight off my shoulders and off my heart.

But, even though this blog is about Simon, and now George, I never really stopped to consider the effect it might have on them when they’re older. Not really. I mean, I took down the photos of Simon after reading a horrifying story about assholes stealing pictures from blogs. But that was the extent of it.

Until I read this:

Why I Decided to Stop Writing About My Children

Now I’m wondering if someday my boys might feel violated because of the things I’ve shared here. If they might be embarrassed. If they might resent me for it.

So, I’m not sure what to do right now. I’m seriously considering ending Simon Doesn’t Say. I don’t post very often these days and it’s likely to become more sporadic as I devote more of my writing time to my novel and other projects. I don’t have a big following here, unlike other parent-written autism blogs, so it’s not like leaving will create a giant void.

But, most importantly, this has to be about the boys. Maybe I should leave these stories for them to share when they are older, if they want. Maybe I shouldn’t make that decision for them. Yes, I talk a lot about MY feelings, but, ultimately, these are their stories (*cue Law & Order music*). Not mine.

Maybe it’s not my place to tell them.

 

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There’s always one meme or another floating around Facebook that says something to the effect of “you’ll miss the shit your kids are doing now when they get older” or “the hardest part of parenthood is the kids growing up” or whatever. You get the idea. I saw one the other day and I rolled my eyes so hard that I think they hit the wall. It’s hard to tell, though, because of all the oatmeal that’s still there from breakfast three days ago.

No, I don’t think I’ll miss having young kids when they’re older. I really don’t. Some aspects of them, sure. The baby snuggles, the hilarious things they say, the current obsession with naked tabletop dancing to the Hamilton soundtrack (it’s a thing, really).

But the rest of it? You can keep that shit.

I’m serious. I’m tired of it. Adam’s tired of it.

Sitting here tonight, I started listing all of the things I’m tired of, but then I realized that that’s not really the point.

The point is this: Telling stressed-out, exhausted, scared, worried parents that they need to treasure these days of hell because they’ll miss them when the kids are grown up totally diminishes and dismisses what these parents are going through. It totally glosses over their struggles as unimportant. You’re saying that they are wrong for feeling how they do.

When you dismiss someone’s feeling or struggles like that, they will eventually begin to feel GUILTY for feeling the way they do. I know I do. I feel like a shitty mom every single day because I am constantly being told/shown that I should be cherishing these fucking precious moments. I do not cherish them. People tell me that I am amazing and I feel guilty for that, too, because how can I be amazing when I am struggling so? I feel guilty because our day-to-day life is chaotic and messy and loud with lots of tantrums and yelling. I feel guilty because it seems like I must be letting my kids down or somehow damaging them because I am not this smiling, laughing, happy Mom-type person who can manage to take everyone to the zoo and then come home to make cupcakes and precious memories while keeping my hair and nails perfect.

I have three very young children, two of them with special needs and the third is showing signs of an anxiety problem. My house is a wreck. I am a wreck, emotionally and physically. I cry frequently throughout the day. I yell at my kids. Two of the kids wake up at the ass-crack of dawn every day; the other kid can’t fall asleep at night. We’re all exhausted and on edge. We have no local friends. No local family. No babysitter. No help.

I am, quite literally, counting the days until they go back to school so I can maybe actually sit down for five minutes without someone crawling all over me. So I can maybe get some work done (my book ain’t gonna revise itself, yo). So I can clean. So I can rest. So I can breathe and work on figuring out WHO I am besides this broken, tired creature called ‘Mom’.

And what happens if this is as good as it gets? We don’t know what the boys’ diagnoses will mean for them in the future. What if it never gets better than this?

Most days I feel like I am screaming into the abyss and getting nothing back except for a smirking reminder that I am supposed to be enjoying all of this somehow, because, hey, I’ll miss it someday.

I highly doubt it. But I give you all full permission to call me out if I start complaining in five or ten years about my babies being all grown up.

Just do me a favor while we’re waiting for that to happen, okay? Don’t tell me I’m supposed to be enjoying this. I don’t need that added guilt.

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“But he looks so normal.”

I’ve been hearing this a lot lately. Not about Simon, although it does happen from time to time, especially now that he’s talking more.

No, I keep hearing this about George.

To be fair, George is an odd-case, even in the world of autism. Multiple doctors and therapists all agree that he doesn’t present like most ASD cases and no one is 100% sure that he has autism.

But none of that really matters. He has the diagnosis. I have the reports. Medicaid has been notified. (Which reminds me, I need to call them, because they can help apply for DDA assistance for both boys. I must find time to do that. Yeah, right.) His pediatrician has been notified. All his therapists know, and here in a few months we’ll start talking with the school district about his transfer into the developmental preschool.

Regardless of how he looks or how he acts, he IS autistic.

I run into a lady a couple of times a week. Her daughter is slightly older than George and is also autistic, and more impacted than George, although not severely so. She’s a nice lady and her daughter is very sweet, but it seems like every time I see her, she says something like:

“He looks so normal.”

“Will he even get into developmental preschool? He doesn’t seem like he would need it.”

“He doesn’t look autistic.”

For my own sanity, I have to believe that she really thinks she’s being kind by saying these things. That she thinks it’s a compliment. And she’s probably looking at a kid who has more social and communication skills than her child and is feeling wistful, if not jealous. I get that. I’ve been there. I’m still there when I see typical kids my boys’ age. I get it.

But it’s driving me crazy. I worry that maybe everyone else is going to decide that he’s “normal” and pull him from the services that he so desperately needs. I worry that the asshole doctor I yelled at a year ago was right (and, man, wouldn’t that just piss me off?). I worry that if George doesn’t have autism, then what is going on with him? What if it is something worse, like a tumor or some weird neurological disease? It’s gotten to the point where I feel like I need to carry his diagnostic report with me so she can read it.

Mostly, though, it makes me sad. Because, yes, in a lot of ways, George does seem “normal”. He’s a sweet little boy who loves to climb and do flips and snuggle. He loves to color and watch ‘Super Why’. He dances and tries to sing. He thinks farts are the funniest things ever and will be the first one to tell you “Simon pooped”, even if he’s the one that did.

This lady, though, doesn’t see the rest of it. She doesn’t see the little boy who feels things so deeply that he almost hyperventilates if you raise your voice to him. Whose emotions are so big that he will slam his head onto the floor, wall, table, hard enough to leave bruises on his forehead, whenever he gets upset or mad. She doesn’t see him pinch himself. She doesn’t see him stim. She doesn’t see him spin plates and bowls or turn tricycles over so he can spin the tires. She doesn’t get to see that part of him. Adam and I do. We deal with that. We try to teach him to bang his fists instead of his head or how to count until he calms down. That’s on us, and his therapists, and his teachers. This lady, she doesn’t get to see that part.

She just sees that he looks “normal” to her.

What is “normal” anyway?

I often tell people that we speak ‘Simon-ese’ around here and they look at me like I’m crazy.

Simon is talking up a storm these days. He’s coming out with new words and phrases almost every day. He’s also branching out in his sentences. Until recently, he was all about the “I want/I don’t want” which is very typical for his stage of language development. However, he’s also now doing “You should” and “This is” sentences, which is all very cool.  He’s trying to sing songs and can now count (and read) up to one hundred.

However, it doesn’t mean it’s easy to understand what he’s saying.

A lot of times, he’ll be asking or telling us something and we just don’t understand, at which point one of three things will happen: 1) He’ll throw a fit, 2) We’ll eventually figure it out before he throws a fit, or 3) We’ll try to distract him with something else like a book or a toy.

That’s his apraxia talking (pun intended). The signal doesn’t get from his brain to his mouth correctly, so the words can come out garbled or he’ll use the wrong words altogether. Sometimes it’s situational. For example, one of his therapists will tell him to sit with his legs crossed and he’ll repeat “criss-cross applesauce” and it will be clear as day, but when he is asking for an applesauce pouch? It comes out “apple boss”.

With Simon, ‘puzzles’ and ‘pretzels’ sound pretty much the same, and we keep them in roughly the same area (puzzles on top of the fridge, pretzels in the cabinet next to the fridge), so him pointing isn’t particularly helpful. We have just offer both and see what he wants. Usually it’s the pretzels.

Today at lunch, he wanted blueberries with his chicken nuggets. (Don’t get me started on the chicken nuggets. I hate those things, but he won’t eat much else.) But he couldn’t quite say ‘blueberries’, so he was just dancing around the kitchen asking for “chicken and boobies, please.” Hey, at least he’s polite, right?

In addition to apraxia, Simon is also dealing with echolalia. Sometimes, he will repeat what you say if he’s not sure what he’s supposed to say; i.e., you say ‘hi, Simon’ and he’ll say ‘hi, Simon’ right back to you. He knows he’s supposed to say something, he just can’t figure out what.

Sometimes, he uses a word that he associates with an object, even though it may not make sense to anyone else. What do you say when someone is taking a picture of you (in theory, roll with me here, people)? “Cheese!”, right? Then what happens? The flash goes off and there’s a bright light in your eyes, yes? Okay, keep all that in mind. Simon brought home head lice from school. No big deal, we dealt with it, and he was the only one of our kids affected. (I say that very calmly now, but I was in hysterics when I pulled one out of my waist-length hair.) Anyway, I’ve been combing his hair out with the nit comb 3-4 times a day for over a week now, and I use a flashlight to look at his scalp. He really enjoys me doing that, especially since he gets to play with my phone while we do it. One day, he grabbed the comb and yelled “Cheese!” with a big grin on his face. Took me forever to realize that he was talking about the flashlight. He associates bright lights with saying ‘cheese’ and the flashlight is a bright light. So now if you ask him to go find the cheese, he comes back with a flashlight.

(On a side note: During his two lice treatments, he had to wear a shower cap for an hour while the goo did it’s stuff. That’s hard for any little kid to handle, especially an ASD kiddo, so we lifted the TV embargo during those times. He actually handled it really well and was able to transition away from it without issue. Still doesn’t mean he gets to watch it all the time, though.)

He has a set routine of things he’s supposed to say in certain situations. If Adam or I leaves the room, he’ll say “bye-bye, have fun, see you soon” or “daddy go pee. have fun.” He’s also really fond of saying “Damn it, Simon” when he does something he knows he’s not supposed to do.

When he wants to listen to music, he’ll ask for “song in car”, because he knows he gets to pick songs on the way to and from school. His current faves are ‘Toxic’ by Britney Spears (“toxin”) and ‘Rapunzel’ by DMB (“unzel”), although he also appreciates “machie man” (‘Macho Man’ by the Village People) and “whoo!” (‘My Sharona’ by The Knack).

This is what I mean by speaking Simon-ese. It’s a whole different language sometimes and you never know when it’s going to change.

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