Tuesday, 11 April 2017


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.

Thursday, 12 January 2017

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?

Tuesday, 22 November 2016

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.

Thursday, 10 November 2016

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.

Friday, 15 April 2016

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. 

Tuesday, 5 April 2016

On awareness

Last week at the bus stop, I talked to another mom as we stood there waiting for the first child to make it off the bus. That child is autistic, with what is clearly SPD and is always crying and throwing his backpack, noise cancelling headphones, and finally himself at his mom as he exits the bus. She is likely trying to break him of the habit of expecting her to carry him off the bus, and I feel for her. He is probably 60+ pounds and nearly 5 feet tall, and she is quite tiny.

The mom I was chatting with looked slightly appalled as the usual routine crying and screaming took place. I noted that it could be hard sometimes as our children get older and bigger. That was when she replied, "Well, there is obviously something wrong with him. She should drive him to and from school in her car."

My son stumbled off the bus (his coordination is still problematic), and I commented, calmly, "He is autistic," as I steadied my son.

She replied, "Well, yes, you can see that he has problems. His poor mother."

I replied, "My son is autistic too."

She was nonplussed. I don't know what she was thinking. She did not, to her credit, tell me she was sorry for me or my son. She finally said, "Well, okay, I see." Then, "I know now. Good."

Her daughters jumped off the bus, giggling like mad, and we parted ways, but it left me a bit out of sorts.

This was the same lady who tried to talk to my daughter earlier that week, and when I told her Kitten is non-verbal, gave me a blank stare, then babbled a bit about how some children are shy and only talk to their parents, and I just let it go because I didn't want to get into it, and the bus was arriving.

This isn't the worst kind of person I have dealt with. My "favourite" is still the woman at Monkey's gym and swim who, upon learning that my son was autistic, asked, "Your son has autism? Are you sure that he should be in a class with kids who don't have autism?"

It isn't that folks are deliberately mean. It is just so discouraging that "awareness" is still lacking with most people.

I have to remember that most people, while they might know someone with an autistic child, or be related to someone who does, they are not immersed in non-optional autism awareness 24 hours a day. I forget that the terminology, the jargon of autism isn't common knowledge. For most people, autism awareness is barely on their radar, if at all.

That is why I don't agree when people say that the message should be "autism acceptance" or "embracing autism" rather than "autism awareness". For the parents, caregivers, teachers and professionals who are involved with autistics, we need to go beyond awareness, certainly, but the general public really does still need that basic education about autism that we find so familiar and simple. It is hard to accept, embrace or celebrate what you barely understand.

Tuesday, 1 March 2016

Social Worker's Month

It is, I am told, Social Work Month.

A lot of special needs parents and adults have had interactions with this group of overworked, underappreciated professionals. This is one of mine.
My son was 4 when we started him in an early intervention program. At that time, he was non-verbal, had a lot of SIBs, was inclined to dump everything in the kitchen into large, disgusting piles, and he was a frequent fecal smearer.
As I have mentioned before, all government funded therapies for early intervention are in-home.
We had a few rough spots with our first service provider, although at the time I mostly blamed myself. My housekeeping was never up to their standards. (see I have failed)
We bought, with my mother-in-law's help, a small carpet cleaner, used disinfectant wipes, swept, vacuumed and mopped multiple times a day, and I was hopeful that it was enough.

It wasn't.

One day I got a knock on the door, and a pleasant middle aged man was at the door. He presented identification, and told me that there had been a call to child services about conditions in our home. That he was there to investigate this.

I honestly don't remember whether the house was at its best that day or not. Probably not. It was in the afternoon, while the Monkey was at his preschool, and Kitten was still a baby. I must have been polite, let him in, spoken at least somewhat coherently.

He went to each of the rooms in the house. The bedroom where Monkey had only the night before defecated and played with his toys in the feces. The bathroom where we cleaned him up. The living room with its hand-me-down cat scratched furniture and scattering of random toys, clothes and baby stuff. The kitchen, which I still hadn't managed to entirely rid of the soya sauce/formula/coffee stink from the Monkey's latest successful infiltration of the pantry.

The social services worker was quiet, patient, and pretty thorough in his inspection. I was in a state of shocked panic. All my doubts about what kind of parent I was were slamming through my brain. I remember trying to apologize for the mess, when I mentioned Monkey was autistic, and admitting that he smeared, and that I tried to get everything cleaned up but I didn't know, I might have missed something.

And then he stopped me and asked, sounding irritated, but not with me, "Hold on. Your son has autism?"

"Yes. He is at his special needs preschool right now."

"Somehow the reporter failed to mention that." And he sat down, and talked to me.

He said that even not knowing my son was autistic, he had found no grounds for concern in our house. The fact that there was a bit of a mess of toys and household stuff just told him that we cared about our kids and gave them an enriched environment. The report had mentioned the smell of feces and unpleasant food smells, but he couldn't smell any fecal odors, so we must have done a very good job of cleaning up, and the food smells didn't smell like rot or garbage, and there were no insect problems present, so there was no concern on his part there.
In fact, he had no concerns at all about the fitness of our home for our kids. He was clearly annoyed on our behalf as well as his own, that someone had called about this, without informing the office that we had a child with autism. He offered to give us a list of services available and help us find assistance for Monkey, but when I told him what we were doing and what we had applied for so far, he told me we were doing everything he would recommend, and it looked like we were doing a great job.
He still had to get my husband to come in with Monkey for a brief interview, but he saw no reason that when that was done, that they wouldn't be closing the case with no further action required.
He told me we were doing a great job.
It was the first time anyone had ever said that about my parenting.
That I wasn't failing.

Since then, I have met, online and offline, a lot of social workers. I have been delighted to discover that the worker we dealt with was not an exception, but one of many good, compassionate people who do a job that is not in any way easy.
Their clients include lot of people who have been put down, marginalized, and abused until they lash out at these front line workers who are there to help. Social workers handle these attacks with compassion, humour and astonishing grace under pressure.
They are criticised for not being perfect, for the flaws in the system that make their jobs insanely complicated and sometimes nearly impossible. 
They get frustrated and upset and angry, but they are professionals, and handle themselves as professionals.
The majority of social workers that I have known are dedicated, caring, and determined people who are genuinely interested in helping.

I want to say thank you, to the worker who investigated the call against us, and made it an ultimately positive experience. To all of the workers who deal with terrible situations and difficult people and still retain compassion. Thank you.