My autism is not my son’s autism. Or is it?

When I was in college, I became friends with a fellow student who was diagnosed with Asperger’s Syndrome. I started reading about Asperger’s and was struck by how much it sounded like …. me. I’d been searching for years, my whole life really, for some kind of explanation as to why I felt so different from everyone around me, had so much trouble making friends, and was always offending people without understanding what I’d done wrong – and here was the first explanation that really seemed to fit. It also fit with the sensory challenges I’d had all my life, with my intense obsessions, my physical awkwardness and clumsiness, my need for routine, and the various self-soothing behaviors that I now know are forms of “stimming.”

I told my parents and they said “No way.” Then they read some books about Asperger’s, called me back and said, “Never mind, you definitely have it.” They consulted my old psychiatrist, who said something along the lines of “Oh, that explains a lot!” And so I embraced the notion that I was indeed on the spectrum.

Until I got a job working with autistic adults.

These adults were at the other end of the spectrum from me, to the extent that the spectrum has “ends.” (I think of it more as a scatter plot.) All the scariest-sounding behaviors people think of when they think autism, these folks displayed. They needed 24/7 supervision and maximum support. I liked them; I liked working with them. But it put my own challenges in perspective.

And then the DSM V came along and Asperger’s was no more. I continued to think of myself as having some autistic traits, but not really actual autism. I didn’t dare lay claim to the same label that, for my clients, was so encompassing, so disabling. In some ways, I related to them and felt that I understood them. At the same time, there was plenty that I didn’t understand; and my own great privilege in having a husband, a job, and the ability to more or less communicate my thoughts, was very very evident to me.

Then I had a baby. And that baby had all sorts of medical problems and delays. And then my baby grew into a little boy and was diagnosed with autism.

Around that same time, my therapist suggested that I’m also on the spectrum, and I had to confront, again, from a new perspective, just what exactly that means.

Only time will tell the level of support that my son needs long-term, but I know this much: he has challenges that I never had as a child. I was not delayed in speech or self-help skills. I didn’t leave buildings by myself, bolt in front of cars or wander into bodies of water. I was sufficiently aware of my body’s boundaries not to injure myself and others on a regular basis. I didn’t lose skills, become so anxious I’d stop eating or drinking for days, or have insomnia and GI problems that required medical management. On the other hand, my son already at the age of 3 has more language than my adult clients had, and many other skills are incipient or emerging.

Some people, often parents of individuals with severe autism (i.e. those that need maximum support), feel that we need different names for the mild and severe ends of the spectrum. I completely understand where they’re coming from; I feel the same way at times. The problem is all the people, like my son, who are somewhere in between those ends. Not only are they in between the extremes, but they are all over the map in that in-between area. That’s why I think of it more as a scatter plot than a spectrum. And if that’s the case, if there are points all over the map, then where do you draw the dividing line?

I do believe that autism is an umbrella term. There are autisms. Similar behavioral profiles with various etiologies and various degrees of disability. Genetic causes (including some known chromosomal anomalies), environmental causes, combinations of the two. Comorbidity is characteristic of autism, which adds further variation.

Rett Syndrome used to be grouped together with autism spectrum disorders; now it’s understood to be a distinct disorder. That may very well happen with other developmental disabilities that are now grouped under “autism.” But until it does, until we can scientifically sort this stuff out, it seems better that instead of fighting with each other, we use our commonalities as a starting point and try to learn from the huge variety of experiences on what is currently the spectrum.

That goes for both parents and autistic individuals. Autistic adults who need only some minor accommodations to live independently, and who want to dispute that autism is a disability in any but a socially constructed sense, need to pay attention to those who are undeniably disabled by their autism. (None of that “It’s not the autism that’s disabling, it’s the comorbidities.” That’s a cop-out.) And parents of nonverbal autistics need to listen to those at various points on the scatter plot who are able to communicate verbally (not necessarily vocally!), and have their assumptions about their child’s inner life continually challenged. (No, I’m not saying that inside every autistic person is a hidden genius. But there are parts of every person that are unknown to their parents and caregivers. Profoundly disabled people are no exception to that.) Most of us, whether we’re autistic or parents of autistics, are hurting, which makes it hard to be open to others. Even so, let’s try to listen to one another’s experience without discounting it.

It’s OK to make distinctions between severity of symptoms and levels of support needed, as long as we don’t use those distinctions to set up opposing camps. Lines can divide, but they can also connect and become beautifully complex shapes.

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Dear medical staff: can we have the stickers without the gendered assumptions, please?

Monkey’s favorite show right now is “Sofia the First.” He loves the flying horses and the woolly wombeast. He particularly loves Cedric the evil sorcerer, and the dude with the magic show who kidnaps Clover and renames him Mr. Cuddles. (Monkey’s stuffed bunny is now named “Mr Cuddles” and is forced into servitude multiple times a day.) He got really excited a few days ago when he saw Sofia in her purple dress on a puzzle at the library. He also loves to watch the songs from the movie “Moana” (he has a name for each song: “How Far I’ll Go” is “the pig”; “You’re Welcome” is “the big rock”).

So it bugs me when, as this morning, we are at a doctor’s appointment and the doctor or nurse, who is kindly fanning out a handful of stickers for Monkey to choose from, shuffles rapidly past the Sofia and Moana stickers and go straight to Ninja Turtles and Spiderman.

OK, maybe it’s not a big deal. They’re just stickers, right? But you know what, screw that, it IS a big deal. My 3 year old just went through an uncomfortable and scary procedure (which happens to him A LOT) and he should get to pick a sticker that he really wants, not what YOU (well meaning adult) think he should want. I mean, at least let him LOOK at the stickers you would show if he were a girl. Just show all the kids the same stickers! I’m sure there’s a little girl out there somewhere who loves Ninja Turtles and would be thrilled to have the sticker Monkey somewhat reluctantly took for lack of options.

I’m trying to come up with a quick, polite way of letting these medical professionals know that they need to show him the “girl” stickers too. I’m just not sure how to phrase it. I did speak up once, and Monkey delightedly chose, from a full drawer of stickers, one with Dora on it, which was his favorite show at the time.

This is 2017, folks. It’s not even about gender identity or sexuality at this point, it’s about acknowledging that human taste doesn’t fall into neat stereotypical boxes along arbitrary gender lines.

When I was little, I loved dinosaurs (still do). I put bows on my dinosaurs and made them marry each other. I played with a “boy” thing (dinosaurs) in a “girl” kind of way (weddings), just like Monkey enjoys a “girl” thing (Sofia) in a “boy” kind of way (evil magician). (Even these designations are arbitrary; I love a good evil magician as much as the next person.) But it doesn’t occur to companies to sell shirts with dinosaurs wearing bows in the girls’ section of the store, or with Cedric and his evil crow in the boys’. I can’t decide if this is prejudice, or capitalism, or a lack of imagination. Maybe all of the above.

Circles

Parents of children with disabilities/special needs/whatever will often relate their experience to the well-known five stages of grief. Personally, I don’t find that these stages express my own experience well. I’ve never gone through denial or bargaining with regard to Monkey’s challenges. As for the other three – anger, depression, and acceptance – I go through all of those, but not in any kind of orderly sequence. They are all sort of jumbled up together. One will predominate for a while, then another for a while, and they move in circles, overlapping, mingling.

I don’t grieve for “the child I expected to have” or “the parent I thought I would be” or any of those things that people often mention. I’m not neurotypical, I never expected to have a neurotypical child, and if anything I’m probably a better parent than I thought I would be (I had low expectations). Monkey is so much awesomer than any child I could possibly have conjured up in my imagination. In my darkest moments I don’t wish for a different child.

No, what I wish for is a different world.

It’s the world that I grieve over. Sometimes – often – Monkey is the catalyst for that grief.

For instance, while we were on vacation, we took Monkey to the park. There was a little boy there who was the same age as him – their birthdays were a week apart. The boy was zipping around on a little scooter thing; he offered Monkey a turn. Monkey tried, but couldn’t figure it out. The boy kept talking, and Monkey couldn’t keep up with him verbally. Then the boy started literally riding in circles around Monkey, who stood in the middle, bewildered, still, uncertain.

I grieved over this incident for the rest of the day. It was just too perfectly symbolic of what I see so often, and what I know will often happen in Monkey’s life – that others will run circles around him.

I had a two hour meeting with therapists and school officials earlier this week in which we all talked about all the things he isn’t doing, all the things he struggles with and needs. He will be in a special needs preschool classroom. He will get physical therapy, occupational therapy, speech therapy. He is behind his peers. He is developmentally delayed.

But that’s not how I see it. That is, I see the difference from his peers, and I see his struggles, but I don’t see those things in light of the value judgments that the world makes. I grieve because the world values people who are FAST, and people who are STRONG. People who are loud and flashy and attractive, who know how to lie and manipulate others. Those who can run circles. Meanwhile, the world overlooks, or disdains, those who are standing in the middle of the circle – quiet, thoughtful, slow, observant – the center, the gravity that makes the orbit.

Things that go bump in the night (weighted lap pads, health care bills)

Well, I’m back. Back from a refreshing, wonderful, not-long-enough vacation to – whatever this is. “Real life”?

Monkey did much better on this trip than the last one we took (which involved self-injurious meltdowns, regression and dehydration). This time, we were prepared. We brought a binder full of visual supports, headphones, an iPad with his favorite games and videos, fidgets, a weighted lap pad with farm animals on it.

The lap pad was very calming for him on the plane. Unfortunately, it had the opposite effect on the TSA agents. On our flight out, they searched my carry on, questioned me about it and then tested the lap pad for explosives. On our flight back, I removed it from the carry on before sending it through the scanner. They still questioned me and tested it for explosives. (Behold the terrifying object: Find Me Lap Pads) Despite the hassle, I will definitely bring it the next time we fly, because aside from lowering his stress level, it’s the ONLY thing that keeps Monkey from continually kicking the seat of the person in front of him.

I tried hard to avoid thinking about Monkey’s doctor’s appointments, therapies, etc, while on my vacation. However, I have been following the progress of the AHCA in the Senate and have been continuing my healthcare advocacy on and offline, contacting legislators, speaking with human rights organizations. I saw the footage of protestors being dragged out of their wheelchairs and carried away by police. That’s our future if we don’t fight back – except that, eventually, the cameras won’t be there. So, once again …

CALL YOUR SENATORS! Especially if they are Republicans. Tell them to vote NO on the AHCA.

I need a vacation.

Like, really really bad.

I’m beyond burned out. It feels kind of like depression, but it’s not, because if I spend a whole day sleeping I actually feel better afterwards. I keep starting things and then stopping them because I don’t have the energy to see them through. I don’t even have the energy to be effectively angry about the AHCA and all the other garbage the GOP is inflicting, or trying to inflict, on us.

Half the time I can’t remember what I’m doing. I know I’ve done some hilariously silly things lately – of the putting your keys in the refrigerator variety – but I can’t remember the specifics of what I did. So that’s not very funny.

What I know I’ve been doing – taking Monkey to doctor’s appointments and therapy and school evaluations, making complaints to the school district, scheduling more appointments, rescheduling them, grocery shopping and cooking (why do our bodies require so food so frequently? WHY???), deep cleaning the apartment (I seriously need a maid – I can pay exactly $0 per hour, anyone interested?) and of course making sure Monkey is washed, fed, medicated, clothed, intellectually stimulated etc. He just got his first pair of eye glasses, which look incredibly cute on him. We had a last-minute trip to the pediatrician today to try to decipher this cough he’s had for a while – to figure out which of his conditions might be causing it and whether it’s a serious one or not so much. He’s got a sedated MRI coming up. I can do all that stuff, I just have nothing left over. I’ve been dealing with my own health issues as well.

Fortunately, Monkey and his dad and I are going on a trip, very soon, to visit family. This means that for a while someone else will prepare my food and play with my child. It’s going to be fantastic. Maybe when I get back, I’ll have the mental energy to write a blog post about something other than how tired I am.

In the meantime, if you’re reading this and you DO have energy, PLEASE tell everyone you know how horrible the AHCA is. I’m not sure why the GOP is so determined to deprive kids like my son of decent medical care by segregating them into under-funded “high risk” pools; I suspect it has something to do with those big corporate tax cuts they’re handing out. Whatever the motivation, it’s not OK. It’s evil, actually.

So tell your senators, especially if they’re moderate Republicans. Yell at them for me, because I’m too tired right now to yell.

Life, laminated

The most exciting thing that’s happened this week is that I came up with a new way to organize our growing collection of picture cards for Monkey’s visual supports. Ta da!

picture cards organizer 2

I had previously tried organizing them with paper clips or rubber bands, and sorting them in envelopes. They have velcro on the back, so they don’t stack nicely, and both of these methods, at their most functional, created too much clutter. I considered something like a binder but then I came up with this lovely system, which is more readily accessible and better suited to what we are using them for. The stickers can be easily peeled off to change categories as needed, and there’s plenty of room for more cards. Yay!

We first started using picture cards with Monkey about a year ago, maybe a little more than a year. He was around 18 months. We started with photographs of different foods that he would eat and a choice board. At the time, he had basically no speech that we could understand, so we used the board and pictures like a rudimentary PECS system that allowed him to tell us what he wanted to eat or drink.

Fast forward to now. Monkey is HIGHLY verbal, and we are steadily increasing our use of visual supports. But why is that needed, if he can talk?

It’s not – I just really enjoy laminating stuff.

Just kidding. Although Monkey can offer up such complete sentences as “I wasn’t exactly expecting to see a dragon in my backyard today”*, he often can’t answer the question of whether he wants milk or juice. He has a delay in processing other people’s language. If you offer him a picture of milk and a picture of juice, then he is able to process what his options are, make a choice, and tell you (or point to the picture, but he usually also says the word).

He is much better able to process visual information than auditory information. (His hearing has been tested and is great, by the way. He loves the sound of birds outside.) The more words you use and the more complicated what you are saying (eg. a sequence of steps or events, two-part commands), the less likely he is to understand. And since he has anxiety around transitions, we started using picture schedules shortly after his second birthday, to let him know what’s coming and what’s expected, and to give structure to his day.

Right now, there’s a corner of our living room that is basically a shrine to visual supports. In addition to my lovely organizer pictured above, there’s a daytime schedule and a bedtime routine schedule, both with velcro so we can change them. Then there’s an activity schedule for structured play-time, an activity choice board for unstructured play time, a first-then board (“first wash hands, then snack”), and I am in the process of making a very simple token board. I’m also considering making some cards to put on a key-ring and carry in the diaper bag – for instance, one that says we’re “leaving soon”.

The activity schedules are fairly new and it’s amazing how his play has changed already. The bedtime schedule has been particularly helpful with his anxiety about bath-time. He was getting hysterical every time we put him in the bath, to the point that we couldn’t wash him at all. Apparently, this was because he never knew if we were going to wash his hair or not. If I told him “We are NOT going to wash your hair,” he didn’t understand, especially since he was already upset. But now he knows that if the picture of a bathtub on his schedule is replaced with a picture of a kid having his hair washed, it’s Hair Washing Night. That takes out the element of uncertainty, and now he climbs happily into the tub himself.

Every time I add a new system like this, there’s a part of me that thinks “Aren’t you taking this therapy mom geekdom a bit far? Your son is smart and verbal, do you really need a gazillion laminated pictures to communicate with him?”

But the more we use the pictures, the more it’s clear that, yes, we do. His ability, or inability, to understand and process spoken language at a certain speed has nothing to do with how smart he is. He is a picture kind of guy, and I’m learning to embrace that.

Besides. Anything that makes my life feel more organized and manageable right now is very, very, very welcome.

 

*This is from a TV show and is called delayed echolalia.

Note- I use LessonPix.com to make my cards. It’s a great website, user friendly, allows you to use your own photos, and the pictures they provide are nice – definitely recommend.

Bubbles in the sun

I write a lot of angry posts, because I’m angry a lot. I have reasons to be angry. But there are reasons to be happy, too, and this is a happy post. Today I watched my son and a little girl who’s spent most of her life fighting for it, play outside together.

I’ll back up for a moment. Earlier in the day, I took Monkey to a group activity with other children his age. During the hour we were there, he did not talk to any other children and none of them tried to talk to him. He spent a large chunk of his time waving a stick in front of his face and scripting, which is his favorite activity right now. At one point another little boy ran into his stick and decided that Monkey was “mean.” I then got to hear his mother’s comments about how my son shouldn’t be waving a stick around (probably true, but good luck stopping him).

This is pretty typical of our social interactions lately. Monkey hasn’t had a play date in months, since my last mom friend left the area and then (for bonus points) told me she didn’t want a friend who talked about her kid’s health problems all the time. When he is around other children, he doesn’t know what to do, and they don’t “get” him.

Anyway, we ran some errands and went home. Monkey relaxed with his favorite TV episodes and waved his stick without constraint. It warmed up outside, sort of; it was sunny enough to pretend it was warm. We went out into the courtyard of our apartment complex to play with the giant bubble wand, and were joined by a little girl who lives in another apartment with her grandmother. We’ve run into them several times before.

Monkey and the little girl took turns with the bubble wand for a while. Then I made bubbles, and they chased them. Then they chased each other. While they ran around, I learned from her grandmother that, although her hair has recently grown back in, the girl has been battling cancer since she was a year old. I then shared Monkey’s medical history, as best I could with the language barrier we were dancing around. We watched our children, both of whom have spent too much of their short lives in hospitals, and in pain, and isolated, and hooked up to medical equipment, run and scream and laugh together on the sunlit grass.

Soon they had to leave, although the girl didn’t want to. The moment broke like one of Monkey’s bubbles, but that unexpected human connection, so close to home, stayed with me. Monkey kept telling me, excitedly, that the girl had played with him. He felt it too.

I hope they’ll get to play together again.