Tuesday, May 16, 2006

EughGrrrrSigh and Eugh some more

I was reading some posts at a site today I visit every now and then but not as often as I should considering I know how much they read our site and comment to boot.

Anyway, they have a child that is not talking. This is a weird experience. I am going to lay out mine, and how I reacted and that is all this is, mine.

The first early intervention specialist we worked with was a legend. She was also a speechie and was part of a govt service that did home visits. If properly funded and resourced it would have been a kick-arse service. Instead she left because she was overworked, underpaid and stressed - her replacement was a first-year-out-of-uni speechie who was as useless as tits on a bull. Anyhow, I digress. A lot.

This speechie gave me a two-sided info sheet just before she left. As she gave it to me she said, "it is way too early to tell but just keep this in the back of your mind. It is a worst case senario, but it just may be something you have to contend with." Oscar was about a year old at this stage. She'd worked with him since he was 8 months old. I trusted her. It was a leaflet on developmental verbal dyspraxia.

Oscar has profound developmental verbal dyspraxia. If there is a God - which I believe there is and probably more because it is what I grew up with and was indoctrinated with than any other really good reason - dvd is a cruel cruel trick. A mean spirited syndrome that traps its prey and torments them for life.

I hate developmental verbal dyspraxia.

It became patently obvious by the time he was about 2 that he had every single symptom of dvd. Of course, all the professionals we were working with at the time scoffed - "It's way too early to put that definition on him," "you can only determine the presence of dvd at age 7" etc. it strikes me as bizarre and dumb to say that. I mean, if a parent can tick every.single.box. in a "here are some of the symptoms of this condition" senario, you might as well say the kid has the condition surely? Particularly if you know kids with this condition respond to some forms of therapy far more successfully than others. I mean, DERRRRR.

Anyway, over the years I've endured the following:
- oh, he'll talk when he's good and ready
- my sister/brother/aunt/uncle/long lost relative now in an institution didn't talk until they were 8 and they're fine
- don't worry
- he'll be fine
- won't teaching him sign mean he'll never talk?
- you just need to talk to him constantly
- do you think he'll ever talk?
- how will he get by with so little language?
- he's very communicative isn't he.
- gee, you don't want for understaning what he wants or needs do you
and so on and so forth

There were days I wanted to drive a stake through the eyes of people saying these things. Other days it was just water off a ducks back, but man, it confirms JUST HOW STUPID people can be doesn't it.

If Oscar has taught me anything, it's to think before I speak, consider my phraseology and just stop before asking something that might seem innocent to me, but is laden to someone else.

Because here's the gig:
- everything is not fine
- I have no fucking idea if he will ever speak normally, and at this stage I suspect not
- Yes, he communicates because speech is only one small part of how we make ourselves understood in the world
- If I talk anymore to anyone my head may well fall off
- and NO he will not talk when he is good and ready because he CAN'T

What we found that worked for us was:
- therapy in as least-stressful-a-setting as possible, particularly when he was younger (ie pre- school age). That meant either with a therapist working from their own home, or a therapist coming to you. It meant speech therapy involving his brother and involving games and play. As soon as there was any attempt to make him say sounds or words on demand, he'd just shut-down.
- someone said, "you will hit a therapy wall somewhere between 3 and 4". And man, did we hit that wall. It was the hardest decision to make - to step back from speech therapy for a child with obviously significant speech issues, but his development was going backwards if anywhere at all, my happy only-wanting-to-please child became difficult and non-compliant only in therapy sessions and I was a complete haggard, strung-out mess.
- Makaton signing was the best thing we ever did.
- It takes two to talk - a program out of Canada - was the next best.
- The Nuffield System is STUPID, DUMB, antiquated, and doesn't work. AT ALL. EVER. At least it didn't for our child.
- create other avenues for your child to communicate - one of the new polaroid cameras worked a treat for him in documenting what he did during the day.
- compile books/reference dictionaries for preschool/daycare/school as to what some of their word approximations are and the signs that they use
- back-off on the sound repetitions and focus on the fun stuff - all the activitites that build up their mouth muscles and the like
- never give up hope
- but sometimes, it just really really sucks.


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