Autism Is

I am autistic. I was diagnosed late in life, but it made the past more comprehensible, how I was and am and how the world was and is with me.

What is autism?

Weird question, really.

Autism is a diagnosis. A disorder. A condition. An explanation. A description.

Experiencing autism is like experiencing depression or genius or dyslexia: different for everyone, but inseparable from the person.

It isn't something you can tease out from everything else about a person. Is isn't like diabetes or arthritis or autoimmune disorders, where there is a fairly clear line between the person and the problems. It isn't something that can be sorted into negative effects versus underlying health. It can't be treated like a disease, because the symptoms can be gifts, or burdens.
Things about autism that make problems for the people in my life are often the things I treasure about how I am. The things I do to cope, to fit in, to make it easier to be a part of the world, those are the things that make me feel artificial and alien. 

For me, autism is extremes. Contrasts.

It is not noticing or reacting to a fractured bone in any visible way, but being driven to hysterical screams by the loose seam threads rubbing my skin where the tag has been removed from my clothes.
It is being able to tune out everything around me, but a tiny buzz at the wrong frequency is impossible to ignore or to bear.
It is noticing tiny details of the patterns in shadows, but walking into a tree because I didn't notice it was there.
It is remembering verbatim songs and locker combinations and conversations from my teen years, but unable to process the words of someone speaking to me in time to react appropriately.
It is being able to repeat back long strings of numbers, but unable to remember if I took my meds or brushed my teeth this morning.
It is breaking down with sorrow for strangers because I can imagine their pain so vividly, but unable to read the tone or expression in their voices or their faces.
It is feeling emotions so profound I can't hold still, sensations so intense that I can't contain myself, but must keep myself calm through self stimulation rituals and movements.
It is being unable to talk to people, then unable to stop talking.

It is so different for each person who is autistic, yet with a thread of understanding and shared experience that runs through us when we discuss how it is together. 

It is understanding why sometimes, but being unable to express it to someone who doesn't experience the world and our bodies the way we do.
It is my heart breaking for my children, because I know how it is. It is frustration and dismay that I can't always do anything to help.

It is wishing I could just be boring and typical and normal for a change.
It is wishing everyone could feel things the way I do.

It is being who I am, without letting it limit my ability to live in the world.
It just IS.

Autism travels (poorly) part one

We went on a trip to my niece's wedding this weekend. It was a short trip; we flew in on Friday, back on Sunday. It being report card and IPP time for the husband, we couldn't take a lot of vacation time.

I had the usual anxiety attack while packing, but breathed through it, took my meds, and got it done. We had a friend stay at the house to keep the pets company. We were ready.

Except, as it turned out, I was not.

Hubs got off work, we headed for the airport. We parked in long term parking. We did not take a pic of where our car was, or make a written note of it. (This would bite us in the ass when we got home of course, but that will have to wait for part 2)

Got our checked baggage done, got to the ridiculously long security line and went to the front to see if we could used the expedited lane, given we are travelling with two special needs kids.

And we got attitude, big time, from the security guy.
Apparently, we should have got some kind of notification put on our boarding pass that our kids are autistic and will go batshit if we have to wait in line. He was snarky and condescending, but fine, whatever, we got our little lecture and were grudgingly permitted to go through the shorter line reserved for people with small children. (Six and nine are apparently not small enough, as a rule.)

It still took time, but the kids were better with it than usual, and managed to get through with minimal fuss. Monkey was even calm when he was randomly chosen to have his hands scanned (what are they scanning for? Gunpowder residue? Drugs? the kid is nine and autistic, for f*cks sake, what do they think he would be doing?) Fine. It was done. They kept trying to have Hubs step aside for Kitten to go through the body scanner, even after we explained that if Daddy was not in full view, she was not going to go to the other side no matter how much they insisted. That was finally accepted, Daddy was permitted to wait in front of the arch,  and we made it through.

We were running late at this point, because hubs had misread the itinerary and we were taking off half an hour earlier than he'd thought. We got to the gate, and were asked to show ID.

This is where my stupidity comes in. As it turns out, I had forgotten to get my driver's license renewed on my birthday in September. I needed 2 other pieces of government issued ID to get on the plane.

I nearly had a breakdown.

I really don't understand why identification that has expired by a few months is such an issue. The picture is still me. The birth date, vital statistics, name and address are all correct and current. My Driver's licence is expired, but my identity has not. It's ridiculous.

After hunting through my wallet and purse for several minutes, I finally found my birth certificate and my government issued health care card. Except, they don't match. My birth certificate is, of course in my maiden name, and my AHC is in my married name. The two alternate pieces need to match.  They called a supervisor to the gate.

At this point, it is taking all my control not to burst into tears, scream, and otherwise make a fool of myself and get us missing the flight they apparently weren't going to let me on anyway. Monkey was picking up on my anxiety and starting to freak out a bit himself, so I did my best to keep calm enough to keep him calm.

I dug through the mess in my purse one more time, and finally, I found my SIN card, also in my maiden name, and so matched the birth certificate.

Which was fine, except that my boarding pass and booking were in my married name.

The gate person managed to change the name on the ticket in the computer, while the supervisor lectured me on having proper, matching, up to date ID when boarding a plane.

I did not tell him to go f*ck himself. I feel I should get some credit for that.

We boarded at the last possible minute, dragging our carry-on luggage, of which there was a lot. The kids have flown before, but not recently, so we tried to prepare as best we could. I packed snacks, iPads, and drinks. Hubs bought the kids new headphones that they liked (!) and we made sure to pack lots of cords and chargers. Both kids had toys and stuffies. Diapers and wipes were stowed in every piece of luggage except Monkey's backpack.
For economy flights, there is an extra charge to have any checked baggage, so we kept it to one suitcase for the lot of us. But we were on the plane. I did not burst into tears, pass out, or say anything I would regret.

We plugged the kids' devices into the seat consoles, and the flight went more or less smoothly. Kitten was entranced by the view during take off, Monkey was absorbed in his iPad. Other than a few difficult moments with Monkey and the pressure changes (he can't really blow his nose, or follow any kind of direction on how to make his ears "pop") the flight went smoothly.

We got ourselves to the rental car desk, picked up the car with minimal hassle, and were off to our hotel.

That little misadventure will be in the next part, as this is already way too long a story. Stay tuned for part 2.

Runner

The Kitten has upped her elopement game, and I can't run worth a damn.

I have plantar fasciitis and am about as non-athletic as you can get.

She has bolted into traffic when I release her car seat, when I have turned to hang up my keys before locking the deadbolt on the front door, and, memorably, out the gate, down the alley and up to ring a neighbour's doorbell before I caught up to her.

Any lapse holding her hand or task that requires me to let go for even a second results in her bolting off with no awareness of personal safety, no response to my calling her name or saying stop! or chasing her down. She shows no particular anger or distress before or after these incidents. She doesn't have a problem with holding my hand, but as soon as she sees an opportunity to run, she does.

The constant vigilance required is draining my energy and taking the fun out a lot of the activities I like to do with her, like the playground, or shopping. I want to let her play with the other kids when we go to pick up the Monkey at school, or even to just run around the field, but I can't. There isn't a fence around the schoolyard, and she is just so fast.

I am terrified she will get hit by a car, or fall into a ditch or hole, or get out of my sight and disappear.

I'm not looking for advice. We have had lots of input, asked for, and not. I just wish more people understood the pressures of caring for a child who is functionally non-verbal, non-responsive, and with no danger sense, who wanders and bolts without warning. We are never off duty, never able to just let her do her own thing in a public place. Add the pica and her penchant for random digging and dumping of stuff, and it is a miracle she hasn't had a choking incident or got hurt badly.

I have had the parental duties of taking care of a toddler for four years, since she was actually 2 years old.

So, please don't ask me why she runs. We have been trying to figure it out for years. If I knew why, it would solve half the problem right there. Please don't suggest that she is running to, or from something. Much of the time, she just runs in whatever direction is clear, and when she tires of running, she stops, and I can catch up to her. Don't accuse me, or her dad, or her brother, of being abusive or neglectful, because whatever my inadequacies as a parent, I do not, and my family does not, abuse our Kitten. I am just so tired of fearing for her. Of fearing that the tiniest lapse on my part will lead to tragic endings.

Functional schooling

When my daughter was first diagnosed, it wasn't much of a surprise. She was 4, not talking, not playing with peers or adults, not toilet trained, repetitive actions and behaviours, PICA, elopement... Still, it hurt to know that both of our children were going to have similar struggles, require similar time, effort and (oh ye gods) more flippin' paperwork.

We dealt with it, moved on, got her the placement in an early intervention preschool program. Her January birthday meant we could wait an extra year to start kindergarten, and we arranged for her to stay in her preschool setting for her "kindergarten" year. Her publicly funded therapies have been a bit of a bust, but we continue to try.

My son has made leaps and bound of progress, even starting to overcome the speech impediment that has made language acquisition so much harder. He has learned to read, mastered more fine motor skills, and has some friends at school.

I have hopes for Kitten. She has time to learn.

Fast forward to 2017. Kitten turns 6 in less than a week. At this age, Monkey was talking and mostly toilet trained. We took a bit of a chance putting him in an integrated classroom, and for the most part, he flourished. This year he is in a new school and is thriving with his new teacher and aide.

Kitten talks a little more, but very little of it is functional. Plays with adults, if still not other children. She is still not toilet trained, but she is SO close to being ready. Her stims are more pronounced, but not generally obtrusive. Her PICA is worse, but we are better at keeping preferred non-food items out of her way. Her self-harm and aggressive behaviours come and go. Her elopements have become fewer, though perhaps not by her own desires, but our efforts to keep her safer.

Now we are starting to work on Grade 1 placement for Kitten.

Her evaluations are not a surprise. Her receptive language is estimated to be at age level. Her responsive/expressive language is 18 months. Self care is 2.5 years. Socially, 2 years. She is suspected of having ADHD as well, but can't really be formally evaluated as yet. Her IQ is probably average, but it is very hard to evaluate, as she has very low functional communication.

She is not a candidate for an integrated classroom. This is fair. She needs more time and therapies than a regular class can provide, and I don't want her to be left behind or neglected.

My husband teaches a classroom full of kids who are severely affected by ASD, low cognitive, and high incidence of co-morbid conditions, like Fragile X, CP, ADHD, learning disabilities, and other disorders.

This week at the placement meetings, Kitten's name was on the list. They are trying to decide if she should be placed in the same program at the local school where her dad teaches. He wouldn't be her teacher, but would be in the other classroom in this program. The other option is a class for "higher functioning" autistics, but with her low communication (a few words, a few PECS, a few signs) it seems that there would be a similar issue as with an integrated classroom.

I should be okay with this, her going into the "lower functioning" special needs classroom. It isn't as though I don't see all the reasons. My husband knows and highly recommends her prospective teacher and aides. She will get the help, therapies, and attention she needs.

But somehow, this is hard. Harder than expected.

There is nothing wrong with getting Kitten what she needs to thrive. There is nothing wrong with needing different kinds of help than most. There is nothing wrong with being different.

So why am I so sad about this?

Decor by Crazy

Watching interior decorating shows always makes me wonder what the designers would make of our little palace in the suburbs.

We went with a theme of "easy to clean" and "not likely to break" with a colour palette of "doesn't show dirt".

The furniture is classic "hand me downs from the parents" with Ikea accents, professionally distressed by pets and children. Window treatments in the "came with the house" style and flooring in "we can redo it when the kids are older".

Family room decor is mainly "children's arts and crafts" with accents of "put it on a high shelf" and vintage heirloom  "OMG if you go near that I will take away your iPad for a month".

The children's bedrooms, are of course, individually decorated with a carpeting of Lego, naked dolls, broken toys and food scraps, with the TVs we swore (before we had kids) that we would never put in our child's room. Loose clothing and unidentified smears and stains add a lively joie de vivre to the walls and furniture.

The master bedroom is carefully arranged to give a restful "I will fold the goddam laundry tomorrow"  vibe, and scattered books, half empty cups and cat vomit give a bit of  casual personality to the room.

The bathrooms are equipped with modern fixtures in the "chipped, stained, and cheap contractor installed" motif, with mildew accents and "WTF is that smell?" throughout. Toothpaste, wet towels, dirty clothes, handprints in "please don't let that be what I think it is" on the doorknobs and walls liberally scattered to give it that homey, "whose turn is it to clean" feel.

The kitchen is beautifully outfitted with crusty counters and slightly damaged appliances, "not too breakable" and "cheap to replace" kitchenware and "bought it on sale" accouterments. Whimsical "last holiday's theme" linens add to the playful atmosphere, as do the paper, half eaten art supplies and half finished projects.

In all, a "shabby not so chic" style unifies the whole house with a large amount of pet hair, scratches and bite marks (cat, dog and child), random bits of paper and food wrappers throughout.

We are design savvy.

Weak and weary

Rough week for America.

A man who legitimizes rape culture, homophobia, misogyny, racism, sexism, violence and hatred has been elected to the presidency.

So many Americans that I love are hurting. People wondering if their marriages will be valid tomorrow.  People wondering if their identities will be respected. People afraid that their religious affiliations will lead to loss of citizenship, freedom and safety. People who are disabled in some way are afraid that their basic needs as humans will not be met, that they will not be able to get appropriate health care, education, or housing.  People who are not white, straight, cisgender male, or Christian are afraid for their quality of life, their rights, their very right to exist.

I am a Canadian, so this will not be my leader. I am still traumatized by this election.

I watch as a man who has been accused of sexual predation and assault is put in one of the most powerful positions of leadership in the world.

I watch as a man who is used to coercing, manipulating, bullying and buying prestige, power, and privilege is given exactly what he wants.

I am autistic, as are my children. I am female. I have been bullied most of my life.  I have been the victim of molestation and rape, as a child and an adult. I am not a fighter. I am weak and frightened, and tend to use gentle words and avoidance as my strategies to avoid being hurt. I suppose I am a coward in many ways. My fear tends to paralyse me. I am pretty calm in an emergency, but will break down soon after, and violence terrifies me. I am physically and emotionally weak and vulnerable.

So, according to the kind of man Trump seems to be, I am of little value, a thing to be used should he care to do so (although I suspect I am too fat and old for his tastes), but then discarded, disregarded and degraded.

This is why this election has been so very terrifying, so very triggering for me.

Because I have experienced a great deal of bullying and abuse, and the one thing I had tried to forget about that experience has been shoved into my face again and it is not okay.

That one thing?

That the bullies always win.

Service (or not)

Is it too much to ask that a service provider put my child before their convenience?

Yesterday we finally had a meeting to discuss my daughter's services. They had been put on a 6 month "break" because her home aide was suddenly not working for them anymore. No explanation given, no transition, just a call that she was no longer working there, and that they had no on to replace her. Kitten spent weeks waiting by the door for her after school, crying, "My L---e. My L---e has disappeared!"

At that point, we should have went looking for a new service provider. But then my dad got the news that his cancer is back. Then, just before Christmas, my mother died suddenly of a heart attack. So I let it go. We were reeling with the news, making new plans to drive the 11 hour trip to be with my dad and I just couldn't deal with the paperwork. 

We have already made plans to visit Dad again this summer. Now they are telling us that if we don't start services with them now, they can't guarantee a worker for her in the fall. Plus, they want us to commit to a full summer of 3 hours a day with the worker for the bullshit "family centred" approach, which means I have to be present and involved for every session, and the therapists teach me to administer therapies to my child, essentially. 

Then they gave me their take on why they made us wait that six months, yet won't commit to providing services for Kitten now. They feel that I am not ready to commit to the process, and they don't want to put stress on ME. They keep talking about me being "ready" as if my daughter is just going to stay in stasis while she waits.

She is 5 now. She is going to be in kindergarten in the fall. She has almost no functional language, is not potty trained, is barely tolerant of parallel play with her peers, and is a risk for elopement because classrooms cannot be locked. How is she supposed to develop speech, life skills, safety awareness, social skills, if she can't get therapists because the provider wants to wait until I'M ready? 

No question, I hate the exclusively in-home therapy, family centred approach, but I will endure it for my child to get the help she needs. 

We will now look at a new service provider. Again.Time doesn't stop for us to catch our breath.  I'm still not happy, not optimistic about the prospects, still grieving for my mother, but Kitten can't wait.