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?