Monday, April 11, 2011

Children with special needs and speech: "That stinks!" says Max


"I think he's going to have speech. He'll sound like a deaf person." That's Max's neurologist talking, about six years ago. I'd asked if he thought Max would ever be able to talk; at that point, Max had very few sounds and no words.

The doctor's prediction came true: Max's speech does sound like that of a person who is hearing impaired, somewhat slow and slurred, although it's typically less intelligible. Except for the word "no." Of course that would be the one word he has mastered. He likes to use it a lot.

At times, when it's just Max and me without the iPad between us, it can get frustrating to not understand what he's saying. Lately, Max has been trying to talk more and more. Everyone's noticed it: his speech therapists, family, friends. Way back when he first got a communication device (a Dynavox), I was concerned it would make him less motivated to articulate words, but that hasn't been the case. Max has plenty of things he wants to voice to the world.

His favorite things to say lately: "I'm Ur-ul Ah-eh-hee Ax!" ("I'm Purple Spaghetti Max!") and "Ax eyes ah-eh-hee!" ("Max likes spaghetti!"). Lately, the spaghetti obsession is rivaling his purple one; the other night, we went out to a Japanese place for dinner and I brought spaghetti with me in a container. "Sorry, pretty much all he eats is spaghetti," I said to the waitress, who smiled and seemed to understand. "Ah-eh-hee!" Max said to her, happily. I teased him about ordering spaghetti sushi. Yum.

Every once in a while, though, Max says things completely clearly, and I'm suddenly filled with hope that his speech will get sharper.

I was in his room this morning. The Diaper Champ we have is a veritable antique at this point, we need to get a new one.

"That stinks!" I said as I emptied it.

"That stinks!" said Max.

I grinned. Max cracked up, very pleased with himself.

"That stinks!" are two really beautiful words.

21 comments:

  1. There's hope for all of us!!!!!! Nice:))

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  2. Speech - and the development of it - is a wonderful thing. Namine still speaks mostly in vowels, but it was not long ago when she didn't speak at all.

    Every "inchstone," every success, every development - they are all things to celebrate. Even the stinky things. :)

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  3. That's fabulous. We just don't value speech enough until it isn't there. I live in the hope my 12 will say more. Well done Max.

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  4. @Paul I thought I was the only one who used the inchstone term! ;) (OK, not the only one...but it made me smile to see you say it.) This is such a true post. When my kid says anything remotely resembling a clear word, no matter WHAT the word, I rejoice. Love it.

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  5. As a hearing-impaired woman, I found reading your post interesting. Some people can tell I have a hearing impairment, some can't...

    What really helped my speech as an adult was taking singing lessons...

    (I was born with bilateral atresia and a submucous cleft, so I can understand, from a different perspective, how FRUSTRATING trying to communicate can be).

    Don't listen to the naysayers. A lot of the development stuff is still somewhat rooted in older ideas... and sometimes it takes a fresh approach to help.

    If he is trying to speak more, maybe he and his sister can start putting on plays.. because the best thing for him is using his voice... but not necessary in a frustration-inducing way. (and sometimes speech therapy just made me want to go *ARGH*)

    GO MAX!!!!!

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    1. Hearing impaired woman my ass! FYI The proper word nowadays is to say people with a hearing impairment. Hearing issues dont define anyone any more then vision issues do.

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  6. I have a 4 yo son with Down syndrome and speech has been a struggle for him too. He makes progress, albeit slowly, but I have a hard time being patient. I had no idea just how important verbalization is to me until we had our own "that stinks" moment. I opened the curtains in Pacey's room and he looked out at the sunshine, and clear as a bell said "new day."

    Indeed son, a new day.

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  7. understand what you say about the Dynavox. we felt the same about the amount of sign language Ashley was learning. (WE WANT WORDS!) Now, like Max, he is trying SO hard to make words.
    We did a word count (aka a list on the fridge) last week and he has about 20 intelligible words which he uses in context without prompting.
    I know you won't need telling this Ellen but he IS speaking perfectly just without consonants and consonant blends, isn't he?

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  8. Two great words. Congratulations, Max - you go, kiddo! :)

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  9. Speech, and our children, are such awesome, inspiring things!

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  10. Hee hee! Ya take your victories where ya find 'em! Good for Max!

    You should call ahead to the Japanese restaurant and find out if they have rice noodles/soba on the menu--Japanese spaghetti! The Chinese do it too--good stuff!

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  11. Yay Max! I hope its the 1st of many words.

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  12. I also love the phrase inchstone.

    Dave: Awesome about Ashley! Yes, Max is able to talk though has so much trouble with consonants. Damn consonants. I'm not sure how many words he has. I can get him to try repeating things after me when he is in the mood. Oh, and BTW, that is a lovely photo.

    Jaida: "New day" are also awesome words. Wonderful story.

    CatherineMarie: Max gets music therapy once a week, it has been incredible for him. I have heard him sing words before he was ever able to say them. Today, he and the speech therapist made up a song about getting spaghetti at Denny's.

    Felicia, I know soba noodles! But Max loves the spaghetti sauce. It seemed easier to bring 'em both. Next time, maybe I'll just BYOS (bring your own sauce!) and see how it goes with the Japanese noodles!

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  13. How old was Max when he first started using a device? My 2 year old has CP. Crying and shaking her head are the main ways shes communicating. Her speech therepist wants to try a device. Was the Dynovox the first one you tried with Max?

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  14. Max got a Dynavox at five. The speech therapist at the school he was in at the time--the person who was the HEAD of the department--had resisted. She said he wasn't ready. I took him for an augmentative communication evaluation. He WAS ready. Soon after, we left that school.

    Before that, Max was using PECS. We had all the images assembled in a binder, broken down by areas (eating, toys, bedtime, etc.). I think that is a good way to test the waters, but it really depends on your child. I know that at two Max couldn't have handled the dexterity required for the Dynavox, and that it all might have been too much for him.

    Now that the iPad is out, and there are all sorts of communication apps for it (Proloquo2Go, Tap 2 Talk), I would take a look at that before committing to a Dynavox or other device.

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  15. When I read about Max I can't help but think there are so many similarities between Max and my son Nathan. We had something very similar happen the other day too. My husband was holding Nathan and it was quite obvious he had a stinky diaper. I asked Nate if he was stinky and he got this wicked little grin and twinkle in his eyes and pointed to his little brother Stewart. "Dirt (Stewart) Stinks!" It was clear as day, perfectly intoned and pronounced, I did a mental double-take. I don't often hear that "normal" voice and it filled me with well-tempered hope.

    On a side note, before we named Stewart we went through all the potential nicknames, good and bad. We never once considered "Dirt" as a nickname. But Stewart's big brother, Nathan, with his funky speech issues dubbed him "Dirt" and for better or worse, it has stuck.

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Thanks for sharing!



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