The Speed of Dark

This evening our son came over to the house around 7 pm.    I was polishing silver.  He said “Hi” and I said “Hi” and he wandered around in a vague sort of way.  I asked if he’d eaten supper yet and he said yes, he’d had spaghetti and meatballs.  I finished the spoons I was working on, put them away, and went back to my study to get some work done until Richard came in from the land, since M- hadn’t said he wanted anything and he often uses Richard’s computer (it has broadband.  His house doesn’t.)

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This was originally a post over at my LiveJournal, but generated so many comments that I thought it might be of even more interest here.  I copied & pasted, which seems to have preserved the LJ font size (and I haven’t a clue what to do about it…or why, when I posted this and then looked at it, only one paragraph is “that” size…)  Over there (for anyone who wants to go look and read the comments) the title is Language and Autism.   I have invited the people commenting there to consider coming here and continuing the discussion.

Our son did not learn to talk early, and for years after he said his first word (many years) his syntax was odd enough to make his speech barely intelligible to most people.   Though it has improved a lot, he still gets “tangled’ sometimes, and often “mazes” (repeating parts of a sentence several times.)   It’s clear to me that he’s constructing the sentences in chunks, and has to repeat every chunk to get the whole thing out at the end (like those songs where you have to repeat a key part of previous verses–Old MacDonald’s Farm, for instance.)

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When our son was just beginning to be verbal, and able to say words with a consonant on each end,  one of his therapists suggested we introduce him to rhyming words as a way of training his ear and his speech…extending the consonants he could say,  and so on.

This certainly helped, and he began to try out combinations himself (which was good) except for one little problem.   If you start rhyming one-syllable words in English…starting from harmless familiar words like for instance “bit” and “pit” and “sit”….you end up with words that are considered inappropriate for small children to say.   The child may never have heard those words, the ones that rhyme with “sit” and “bird” and so on, and have no idea what they mean…but if your larger-than-average, older-than-average-when-learning-to-talk autistic child says them,  social disapproval rains down all over the scene.   And autistic kids don’t need any more social disapproval than they get already.

So the day came when our bright-eyed little guy very proudly (and it was an accomplishment–he had just managed the /sh/ sound the week before)  went through his “–it” words and added “sh*t.”

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Uneven development across various cognitive domains is more common than most people realize, but people with autism usually show extreme unevenness.    Anyone working with autistic children needs to be aware of these extremes–and mapping developmental levels in each domain can help target interventions to that particular child’s actual needs.    These interventions should not be aimed at raising the child’s gaps to equal his talents–or stifling the talents to the level of the gaps.  Instead, the goal should be to scaffold progress in each domain from where the child actually is, at the best rate that the child can manage in each.

I learned this first as a tutor, coming in to rescue a child who had started failing in a subject or had some other problem.   To do my job, I needed to find out what the child knew, what the child thought he/she knew, and what had gone wrong–as fast as possible and while building a working relationship with that child.

How do you approach this problem?   It starts with careful, precise observation of the child’s current behaviors in each domain.  Big sheets of graph paper help both the mapping and charting progress.   An ordinary “baby book” that gives general information about normal development allows parents to do at least a rough approximation themselves.

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Thirty years ago,  children with disabilities were not guaranteed education in public schools.    My state had residential schools in the state capital for deaf children and for blind children, but nothing for children who had other disabilities.     I remember the mother of a childhood friend fighting with the school board so her daughter–with severe hearing impairment–could attend regular classes.   (Her daughter is now a professor of chemistry.)    If they weren’t institutionalized,  disabled children were home-schooled, usually by tutors, like Helen Keller.

But now that federal law requires schools to educate all children, why would a parent choose homeschooling?  And why are the advantages–and challenges–of doing so?    Here are some things to think about, from someone who did it.

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When you have a child with disabilities–especially developmental disabilities, whether autism or something else–you want to do the absolute most for that child you can.    That child, you feel–or I felt–deserves–needs–a perfect parent.    That child, of all children, shouldn’t have to deal with parental imperfections–he has enough problems already.   He/she is so fragile, so vulnerable, that any mistakes parents make are likely to be the tipping point that makes it impossible for the child to have a happy life.

Then comes the day…you know the day.  The day you lose your temper.  The day you forget something vital.   The day you aren’t perfectly controlled, calm, supportive, firm enough and flexible enough,  diligent in getting through his/her therapies, the house isn’t clean enough, the vital paperwork goes missing.  That day.

Here’s the story of the day I contributed to stunting our son’s initiative.

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