Warning this is depressing & humourless. I advise you not to read it, unless you are interested in Autism &/or Depression.
A year ago I convinced my two youngest not to buy the expensive glossy calendars because the school produced calendars would be more useful & I would reward them by getting nicer pictures of their interests. The two eldest wanted in. The school didn’t produce a calendar, apparently it was a one off; the first year we were there. But I ran off personalised calendar pages from Google calendar. It went well!
I forgot I’d promised to do it again. Plus Cat was annoyed that I had gotten lots of the dates wrong (i.e. I had not foreseen last minute schedule changes months in advance) and in her advent calendar I had used faces not helmets; which I had done wrong in reverse the year before.
It took 3 days to make the calendars this year with the kids having final decision over the pictures. I hurt my hand and back making them. A printer malfunction drove the cost from about $85 to over $250. And they weren’t exactly what the kids wanted.
Stop! My kids are not ungrateful, they were very grateful. But I could tell. The whole reason I make this stuff is because of their autism. Their obsessive interests not catered to by changing fads and fashions, but they also have a need for things to be just so. Distorted pictures, fan pics, the individual in their favourite series who is just wrong so they prefer for him not to exist so he can’t be in their room, etcetera. Decision making is extremely stressful for Tab & Alex hence 2 double picture calendars each.
But the kids and their problems aren’t the whole issue. I am autistic, I am a perfectionist, not for others just in judging my own work. I believe this insane waste of my time & family money stems from an overwhelming sense of guilt.
Guilt that I bore 4 children with a serious disability. Guilt that I am an unproductive parasite on society. Guilt at the hell I put my family & husband through. Guilt that my children don’t seem to respond to treatment properly.
I sang to my kids to force myself to remember to speak. I memorized parenting books to make up for my emotional deficiencies. By the way before conceiving my first child the latest in a long line of psychiatrists told me I was cured and that my condition was not hereditary or likely to recur. I was a basket case by the end of my first trimester.
I started along the track of craft as compensation because my two eldest weren’t responding to therapy, speech & OT, so I helped by customizing therapy tools with the therapists’ suggestions. This became making toys or books of the things my kids became obsessed with that we couldn’t find at stores. Poetry and song books had to be made carefully because if a piece was too complicated it could turn them off the whole process (I used singing and then poetry for speech therapy & singing for stress).
As they progressed at school I had to pre-read books for anxiety triggers. When they volunteered to do a project on something obscure they had heard me talking about; I would feel I had to create a reference book for them because they couldn’t tell the teacher ‘No”. The reference books or verbal instructions for activities like chess and debating upset them, I created reference books for them. I created reference books rather than help them directly because we all had a strong belief that it is wrong for a parent to do the child’s work for them. So instead I would create references at their level, free from anxiety triggers for subjects that didn’t have such reference books; the teachers were consulted. But my child would have to use my book like a reference book not copying and with a certain amount of interesting material not directly related to their project so as not to make it too easy.
When they were finally diagnosed with Autism Cat was 13; she was embarrassed at the “Social Stories” she was given. So I took over writing “Social Story”ish things that were more mature & in tune with their individual needs & interests. This did not always go down well with teachers. When Cat was emotionally forced out of school I designed curriculum & mini text books to help her prepare for reentering school. When they started Riding for the Disabled I got involved; writing with my Occupational Therapist’s approval pamphlets for volunteers & “Social Stories” & other resources for kids and parents. There was a change in management & my amateur efforts were no longer considered appropriate; one of the new coaches was a nurse and knew all about Autism. A year later & the focus changed to younger disabled kids who could really benefit from the program. My girls were weight limited out as the newer horses were smaller & better for young children. I was told I didn’t understand the despair felt by mothers of profoundly disabled children; children who couldn’t walk. Special Olympics’ medal winners two years running, then no you are no longer in our target group the next; bye bye horses.
But with all this extra effort and all the free/cheap therapy I have been extorting out of our government my children are failing. Cat & Alex get a little better; therapy is withdrawn and they collapse. They are not living they are existing; sleeping or gaming through most of their days. They have no hope for the future; they are only not suicidal if the demands on them are so little that they can drowse through a haze.
Tabitha the one child that was doing well has hit a wall. She can only cope when the material she is working on is not too harrowing. So great, if I pulled her out of English and Humanities subjects in Year 11 and 12 she could go back to 100%s and straight A’s. But she wants to be an actress. If she doesn’t learn emotional resilience now she will not be able to cope with acting school let alone a career in performance. So she is doomed, I don’t see any way forward.
Natasha’s dyslexia, ADD, autism combination has completely destroyed her school career and self esteem. She was only given the dyslexia diagnosis last year despite our knowing for years. ADD we didn’t even guess. The only hope is intense retraining on new devices over the next year. The current funding model doesn’t work that way.
My doctor applied for a shower chair so I could shower independently in Feb. last year, it didn’t fit the funding model either, & I have just wasted $89 on myself so I can shave & wash my hair regularly. What a waste; it’s been 4 years why is it urgent now?
If I followed through with their therapy, if I wrote up their joblists every night and gave them the prompts they needed.
If I kept up with the “Zone” Chart & remember to update the calendars on time.
If I didn’t sleep so much and waste so much time on crafts and blogging. Maybe if I did these things consistently my children would have a decent chance at life. But I don’t so I make them things to assuage my guilt.
I am just so fucking tired all the time, I ache all over all the time. At night I can’t sleep through the pain so I only sleep when exhaustion overwhelms pain. I don’t like to drink but their is the added benefit of dehydration that it is the only thing that reduces the diarrhea & vomiting; trying to juggle that with the fainting is really hard.
But my kids are exhausted too. Natasha had to have 4 not 2 sessions of dyslexia tests because the effort of reading & writing put her to sleep.
When I sleep I wake up & my husband and 2 eldest are almost always sleeping (they all need prompts to stay awake). If I could stay awake & on track maybe we could get somewhere & stop being a useless black hole of need.
Autism; high functioning is not what its cracked up to be.