One for the Specialists...

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A few of you might remember my son was born with a severe cranial facial anomaly that is called a Complete bilateral-wide Cleft of the lip, hard palate, soft palate and gumline. In non-medical terms, that means his upper lip was in 3 pieces though the nostrals, his gums were in 3 pieces and he had no roof to his mouth on the inside.

He has had 2 surgeries to fully repair his cleft. The average is 7. The local physicians said 30+ surgeries to fully repair his cleft. I took him out of our state of residence for the surgeries due to what I felt was... Our local surgeon's Incompetance.

My issue is this...

Kevin is enrolled in Head Start at the age of 3 years and 1 month old. He has been there for 2 weeks, next monday.

For some reason, Speech therapists, Early intervention specialists seem to think.. I'm a moron and have no idea what I am talking about. When I tell them precisely the issue with his speech (hypo nasal with issues on glides and Fricitives) and his Oral Defenciveness due to a Therapist who happend to be an 80 year old idiot forcibly manually manipulated his freshly repaired tissues with a rubber glove, and refused to reward any speech attempts he made in speech therapy because it wasnt the "buh" sound.

Sorry for the rant but it makes me furious!

Anyway, I am tired of being treated like I have no clue about what is going on. I am tired of people assuming because I didn't go to collage that I haven't taken the time to learn about my son's condition and that I wouldn't be involved in my children's education.

Are parents of children with "conditions" that... I don't know.. obtuse to not be involved? I mean do they blindly allow "professionals" guide their and their children's lives with out question? Is the fact that I am a "advocate" for my child really that special?? Or different Or unique??

I'm just so tired of banging my head against the wall just so he can have the services he so desperately needs.

BTW www.widesmiles.org is a website dedicated to clefts if people want to know more about what I'm talking about. Kevin's was Bilateral.. meaning both sides of the lip was split.

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Gen, it's the nature of the beast. I have a TON of experience with that, from all sort of different directions. Myself, as an advocate for others, etc., etc.

What are your options for shopping around and finding someone else? I don't know what your monetary situation is, but you shouldn't have to put up with that.

This is gonna sound bad, and there are of course many, many exceptions, but as an extremely general rule of thumb, you will usually have better experience with someone younger/ closer to graduation from their accredation program. (i.e. it doesn't have to be someone chronologically young, if for example they went back to school late in life.)

Oh and don't assume that it is because you haven't gone to college. I have a Master's degree and they've tried it with me. (I have a certain flared-nostril haughty glare that often works wonders, especially when coupled with multi-syllabic words. Wink

)

It's just a type you find way too often in the "helping" professions, especially those that deal with people with disabilities.

Stick to your guns, see what your options are. Good luck!

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Gen- Please don't put up with that kind of treatment. I agree with Soz. Look around until you find someone with whom you can be comfortable, whom YOU can respect!

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Gen--

Sozobe is right. There are a number of bullies in the "caring" professions who react to informed (and uninformed parents) with lofty superiority.

The trick is to work around them--and to avoid threatening them while still making Kevin's welfare paramount for you both.

You say Kevin is finishing up his second week at Head Start. Have you talked with the speech therapist? You have every right to request conferences with the speech therapist and with any other adults who work with Kevin.

Don't forget that you catch more flies with honey than you do with vinegar. Remember, you have good reason to be protective of Kevin, but your maternal solicitude may come across to a stranger as hostility.

Also, remember that rugged individualists like Kevin are not always cooperative with requirements and standards imposed by authority figures.

Remember, early childhood people are trained in reflective listening. They frequently feel letting a parent vent is all that is necessary. Go to the conference with the goal of listening more than you talk. You may not learn anything "new" but you'll get an idea where the teachers and therapists are coming from.

Have you seen progress at all? Even an itty-bit? If so, say so. Is Keven less frightened/more cooperative with the present therapist than the former sadist? If so, say so.

Are there exercises that Kevin can do at home? What sounds will the therapist and Kevin be working on next week? How can you help? Are the Head Start people familiar with the website you cited? Can they suggest any other resources on or off the internet? Are there audio or video tapes available?

Having a souped up, highly confident kid like Kevin (who has a complicated but correctable handicap) can be exhausting.

We're on your side.

Hold your dominion.

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My friend's daughter has a speech therapist through Head Start -- the daughter is hearing but both of her parents are deaf, and her speech is delayed.

(Brief off-topic rant -- her parents are deaf but discourage her from signing, which makes me batty. Studies show that hearing kids who learn sign early have linguistic gains, which has certainly been the case with the sozlet. The daughter is 4 months older than the sozlet, and there was a point at which my friend was all, "Oooh, my kid's talking and yours is just signing... aren't you concerned?" Now the sozlet is talking at a level far beyond her peers -- she's super grammatical, for some reason, for example. [Much more so than I am with sentences like that one.])

ANYWAY -- the speech therapist they have sounds just wonderful, and the daughter really looks forward to her "class" every week. Lots of toys, games, snacks, etc. So even through Head Start, there are definitely options.

Good luck!

Oooh ooh oooh off topic may be on topic... how much does Kevin talk? Does he have a hard time expressing himself? If so, teaching him sign might be a GREAT tool. I am the signing guru of a parenting board I post to and you would not believe how many people say "my kid's a little hellion", start teaching the kiddo sign language, and then report drastic improvements. This only works when communication is the specific issue, so just-turned-3 is kind of late for that, but if Kevin finds verbal/ voice communication difficult...

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Gen
Some really good advise here.

Stick-In there!

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Hey Gen - come back - tell us what's going on - you've got some super resources already here - and more around the corner.

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One for the Specialists...

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