Monday, September 6, 2010

On translating my child



The really, really good news: Max has been trying to say more stuff lately.

The hard part is that a lot of times, we're not sure what he's saying. Yes, we can dash over to the iPad and try to get him to show us with the Proloquo2Go app, but that's not always practical and sometimes, honestly, I just want to figure it out myself.

Today, we had a bunch of friends over for a barbecue, and Max was standing by the swingset.

"Aaaaaay," he said, pointing to the wooden frame of the set.

We were all stumped.

"Aaaaaay," said Max. "Aaaaaaay! Aaaaaaay! Aaaaaaay!"

These are the moments when I get really frustrated with myself. Shouldn't I be able to get what my own child is saying? Where's that maternal instinct?

It's painful when a child who has so much trouble with speech is trying so, so hard to tell you something, and you're not able to understand. Sometimes, I wing it. "Yes, Max!" or "Oh, wow!" I'll say, hoping he'll repeat himself so the next time I'll catch it. I feel a little bad about pretending, but it feels even worse to not comprehend what Max is attempting to tell me. Once in a while, Sabrina jumps in and translates. She's a little better at it than Dave and I are.

Suddenly, though, I got what Max was saying. And I couldn't stop grinning. The frame of our swingset forms the shape of the letter "a," the second letter in Max's name. He's gotten really into in spelling out his name.


Later, he showed us an "x." Not sure what he's going to do for an "m" but I'll bet he comes up with something.

I'm hoping that, with time, Max's speech gets more intelligible. Years ago, when Max was around three, I asked our pediatric neurologist if he thought Max would talk. He said yes, he would, and that he would sound like a deaf person. That's true, except Max doesn't sound nearly as clear. Manipulating his tongue to say consonants is really hard for him. He has "m" and "r" down pat, and "x" and "g" more or less, and on occasion I've heard a "b" and "d," but there are several consonants I have yet to hear, including "c" and "f" and "p" and "s."

But I have hope. Lots and lots of hope.

How is your child's speech coming along?

26 comments:

  1. So interesting that you would post this now. I have just decided (or realized) that Charlie is actually speaking to us sometimes--I just don't have any idea what he's saying. I heard his friend at school talking and recognized his excited jabbering as something Charlie does. So. . . speech is not going well, but I do think it's in there.

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  2. So amazing how we can interpret our children whether they are delayed or not. I know the difference between Zack's "baba" for book and "baba" for ball. He has a unique way of saying "up" and "mama" is pretty clear to me! Hope to have spelling next! Way to go Max! Hope you can test the new PTPA app!

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  3. ps. of course this is the time that our therapists have decided that he is not longer a candidate for AVT and he is not ready for SLP...when he is showing so much progress and he is developmentally at the age when speech starts (chronologically 3 but developmentally about 12mths).

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  4. My Max speaks fairly clearly, a lot of it is delayed echolalia, but I do think he is using words in context more and more as time goes by. He does have to be pretty motivated to do it, so he mostly talks about food!

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  5. Funny thing is...he said this one clear as day AAAAAAAAAA! Hailey also seams to have her own language or should i say sounds. Lately it seems like she is saying parts of some words, for example if you say car,She will say arrr or if you say slide she will repeat iiiiiiiide. I have just read about something called Apraxia and wonder if Hailey has this, they say when you say a part of a word but not the entire word it could be this. An example of an exercise to help with the letter T is to put a bit of peanut butter on the roof of your childs mouth right behind the front teeth, your child will probably try and get this down with his/her tongue. This is showing them where to put the tongue to learn how to say the letter T. Another good exercise to get the tongue working is to put a small piece of candy on the tip of the tongue,(an m&m works good). encourage them to keep sticking out their tongue for another, etc,etc. nice way to get the tongue working better.May not work for everyone, but worth a try.

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  6. My son is five and his speech is finally coming in. Sometimes he is clear, other times less so. I usually understand him because we spend a lot of time together. But there are times when he is really excited about something and jabbering and I have no clue what he is trying to share. At those times I will usually just nod and say "yes", hoping that's the appropriate response .
    On another note, at the risk of being one of those moms, who asks you about yet another therapy, like you and Max dont have enough on your plate- have you ever tried PROMPT therapy? It's a kind of speech therapy that works on articulation and relies on physical cueing to help a child know how to position his mouth to create certain sounds.
    we have seen amazing results w PROMPT therapy in conjunction with regular speech therapy. One therapist worked on receptive language and concepts, the PROMPT therapist on the specific articulation. Let me know if you are interested in hearing more.

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  7. Oh that darn "f" sound. My little guy's names starts with and "f" and he struggles to make the sound....

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  8. It's so interesting to read this as we have the very same struggles (and are currently looking into what communication devices will work for our almost 2 year old!) My husband said we need to write down all of Jack's words - I'm sure he says 40-50 by now, but they all sound like the same 6 or so. He has some of the same consonants as Max, but others are different, like NO r sounds at all, but great for b and d (cookie and cracker both sound like dada, as does jack-jack and ju-ju (his sister Julia)) we know there is just so much inside trying to get out, and are thankful that in most contexts we can understand what he's saying...but no one else could even begin to! Keep up the great work Max!!

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  9. I was on the verge of getting a speech eval soon, but my therapists have been pretty relaxed about it, saying that a child who puts a lot of effort into motor skills will always develop speech more slowly. My Hannah is so far behind where her typically developing sister was at this age that I am concerned and yet, its so clear that the receptive language is there, I've been avoiding having yet one more set of therapists to see - I am already pretty well demented with our schedule as it is. And then, just in the last two weeks, she has said maybe five new words, and is ready to try new ones on request, even if they are not clear it is obvious she is trying and so I am going to wait a bit longer and see where things go. I swear, hippotherapy has changed everything for us - I want you all to get your kids up on those horses!! It costs a fortune, and my insurance doesn't, as of yet, cover it - but it seems to have spurred enormous growth in motor skills, confidence and daring, and speech. I'll keep you posted.

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  10. Max! Fabulous!!

    Summer has been amazing for noticing development in Mikey's speech. He says 'wowee' so brilliantly! He's trying to imitate so much more and has the pattern and tune right but, like Max, it's lots of open vowel sounds. Every now and then we get a real word like 'hello', 'zip', or 'off' and we stand there in amazement! It's all in there somewhere...

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  11. Can't get any clearer than AAAAAAY for A! I dunno if you want to get into potty humor (I have never met a kid who doesn't laugh hysterically over poops and farts) but you might get the f and s sound with some fuh-fuh-fuhing (and then the really strong "classic" fart sound, with the mouth held as if to make the F sound) followed by the questions--Whose "FFFFF"aaaaart"Sssssss" were those? Were those YOUR FFFFFartSSSSSS???? Then you can run around to all the stuffed toys and action figures and puppets and accuse them all of farting, and ask the question again--encouraging Max to participate with lots of Pee You, hysterical giggling, and nose holding. If you have a pooping pet (cat, dog, hamster) you can do the same thing with their little turds...aka... "P"ooooooooo"P""sssss"!!!!!

    I'm sure a speech therapist would kill me for suggesting this lowest common denominator approach, but hey, it worked here. Be prepared for more poop and fart ha-ha's and ho-ho's than you can stand for a good long while if you go this route, and warn people of the poop/fart phase because it will get play far and wide! There is something very satisfying about "fuffing" the air through your teeth and it IS fun to do in a goofy-guilty way. "Hey, I'm teaching him the F sound, and this is the only thing that holds his attention!" FFFFFFFFFFFFFFFFFFT!!!

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  12. Great to hear that so many of your kids are making good sounds/words! Katy, excited jabbering IS meaningful! It's babbling! That's the start of speech. Max never babbled until this year.

    Ruchi: One of our therapists uses PROMPT! It's definitely been helpful for Max.

    Felicia: Game to try that! No speech therapist would kill you for suggesting that—whatever works, works. That's the approach of all the therapists in our lives.

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  13. Emily is only 2 (she will be 3 next month). She makes sounds, but no actual words yet - that we know of. She says mostly AAAH, but I hear an occasional GAAA. The funny thing is, she gets very "chatty" after she has pooped - guess it is very freeing. haha I love to hear about what Max is doing. It gives me hope that Emily will be doing similar things when she is his age!

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  14. I love PROMPT and the P2G on the ipod. My son is getting a lot of sounds, but I think even in the 3 weeks between summer school and the regular school year, there's been some regression in his desire to communicate with speech. School starts today so I am expecting him to catch up rapidly. It's good to see any progress!

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  15. My son has apraxia and this post really hit home. There are so many times when my poor kid is trying to tell us what he wants and we Just. Can't. Understand. Him. So frustrating for all of us. It was really worrying me because I was afraid he'd stop trying to speak--why bother if no one can understand you, you know? But recently he had a developmental leap and it's gotten way better, thank goodness.

    But yeah, it's hard when the speech therapist understands your kid better than you do. It's like, but I'm his mom! I should has some special instinct about these things, shouldn't I? Well, no. We're not trained professionals, just parents doing the best we can. And it's better if we don't lay that guilt trip on ourselves.

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  16. See this is why I will have so much trouble...I would have instantly thought Bennett was trying a Fonzie impression.

    But in all seriousness, your post fits into something that Katy touched on too...they are all (our kids) saying things and communicating things, just in a language that does not officially 'exist' yet, so we have to figure it out as we go.

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  17. We have been mostly able to understand our girl's words. The most interesting part to us is that he younger sister is now speaking with the same [mis]pronunciations. And it tickles us!

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  18. Oh, this one is the MOST frustrating of all delays for us. By far. We connect by communicating and it's heartbreaking when you simply can not understand what your child is tell you. Oia does talk some but we still say she is more vocal than verbal. At last assessment a month ago, she was noted as having roughly 36 words and she just turned 3. One problem is that may of her words have to be paired and understood with her gestures and utterances have to occur within context or we REALLY have no clue what she is telling us. We often just say "show me" so we can figure out what she is saying. Then, she leads us to her subject in another room and then we generally understand exactly what she is trying to tell us. Words are still single, maybe one or two word phrases, but we're making slow progress in the right direction. Sloooooow....

    Another good post! Thanks!

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  19. I love this post... I was thrilled about the 'A'! Lizzy will soon be 17 months; she says 'goo' and 'gaa' and once or thrice 'dah' but in between a lot of noise. She has done that for a very long time... I thought maybe I heard 'hi' or 'yeah' in there, but probably just me wanting. Yep, with you on the hope part! Our 3 year old - he is still hard to understand and he has never seen a neurologist... I feel the same way about not being able to understand sometimes - that I should. The preschool teacher says he is pretty normal for a 3 yr old but that we can make a referral for speech services later if we need to. Great. More services... But I loved reading about Max's letters!

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  20. I got all stoked that not only did Max clearly day AAAAY, but the kid identified it in an abstract way in his environment--pretty spatially intelligent, wouldn't you say. Go MAX!

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  21. Smart boy!!! Of course...he was showing you the letter Aaaaaaay! As always I enjoy reading all of these comments. It is so true- all the times you're asked, "How many words does your child have?" and you don't know whether to answer, "Well, do you mean how many words *I* understand, or how many words a stranger understands?" My son has apraxia and there were times I thought he'd never speak. He is talking now, but the progress was stop-and-start (still is). It is such hard work- soooo much (PROMPT) therapy and worry and stress every single day, and you don't know if/when to expect any progress. It is such a leap of faith every single day. Kudos to all the moms here for staying strong.

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  22. good job kiddo I enjoy reading your blog keep that talking up!
    lifeofthedifferentlyabled.wordpress.com

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  23. Skyler says a lot, but unfortunately most of it sounds the same! Anything that starts with a hard C or a k sound ends up as "cuck" or worse. Even sock is "c*ck" he has the "ock" down, but I don't know why he starts with a "k" sound. He can make the "s" sound, but he doesn't use it in words. He only does it when we say "Sheesh" or "the mommy on the bus says shh shh shh".

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  24. I pride myself on being good at understanding my campers. Three specifically. My loves. The kids that light up my day.

    It's like a weird badge of pride for me to understand them. But I have a feeling you know what I mean.

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  25. Siblings do seem to be able to understand their siblings more than anyone else, dont they? My 13 year old daughter has Down Syndrome and delayed speech due to it.I am very happy to say that her speech is getting better but sometimes I still dont understand her.The other night at dinner she said,"Caappim"over and over with a big smile.I was puzzled but my 10 year old son Logan said,"Mom,Laura's saying she loves to swim at summer camp."I had no idea how he figured that out.Then he said,"laura, do you love to swim at camp?and she responded"YES(blows kisses)lak boot ilan eep ag caap go go noow?(lake,boat,island(there is a little island where they camp out), sleeping bag,camp can i go now?) It made me tear up now i only have to convince her to wait a month wish me luck :)

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Thanks for sharing!



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