Point of View

I've been stressing over Micah's lack of speech all summer. I'm grateful that it doesn't seem to bother him, but it sure bothers me. I mean, he's 5 and non-verbal. I need to know why. If it's just Downs and he'll eventually get there on his own all by himself that's fine. But what if there's something else going on that we could help with, and don't? I'd feel like the worst parent ever.

So with that kind of driving force behind me I've been relentless in butting my head against every wall that I can find. After much research, many phone calls and a few consultations we've decided that apraxia is most likely thrown into the mix. Turns out his speech therapist specializes in that, but you can't therapize for it until he can say his long vowel sounds. He can't. Back to the beginning.

I really wanted a speaking device for him to start school with and called everyone and their specialist about that. I won't bore you with those details, but it seems that it's a very long and winding road and we haven't even made it to the first bend. I haven't given up on that, and someday he will have a device of his very own. But in the meantime I'm taking other steps.

He needs evaluated at the Child Development Center to try to rule out (or in) anything else hindering words from forming, but they won't see him without direct permission from the Downs Clinic. They're not returning my phone calls.

Just today I was given a number for a special clinic dealing only in AAC devices. They will evaluate him and match him with the best piece of equipment for his needs. I'm super excited about this but am hesitant to call. I know the routine; the referrals, the run-around, the phone tag...

Bang, bang, bang goes my head against these walls.

But I just read recently that toddlers understand 10x more words than they can verbalize. This shed a whole new light on things for me and I adjusted my thinking accordingly. Micah isn't slow or behind at all. Zero words times ten is zero. Trust me, he can understand a whole lot more than that!

In light of this new line of thinking, Micah certainly isn't behind the curve. In fact, he's on the genius end.

30 comments:

Andrea said...

He is just too cute. And I think he is right on cue, he can do the "L" on his forehead then he definatly gets what is going on!! LOL!!

Call and see what they say!! You can do it!!

Karen said...

Andrea - I will, I just need time to mentally prepare myself.

LaskiGal said...

I have no doubt he totally GETS IT. He knows what's going on . . .

With you as his momma, he can do anything. Have faith . . .

BTW, have you ever visited CC at http://ifonlyihadsuperpowers.blogspot.com/? She may have some helpful insight.

Michelle said...

Ugh, I didn't realize it was still so slow to get the assistive device for Micah. I can't imagine your frustration (so pales in comparison to "what preschool is Little Miss going to" dilemma). Have a nice long drink of wine for me, will you?

Good luck!

Burgh Baby said...

I have no doubt whatsoever that Micah understands far more about what is going on than anyone gives him credit for knowing. I watched him very effectively avoid Sam on the swing set and he was obviously seeing right through all the lies Sam was saying to get him down. No. Doubt. About. It. The fact that he immediately jumped down the second I told Alexis it was time to eat tells me he was paying attention to everything everyone was saying.

Go get 'em, Karen. You can do it.

Tranny Head said...

I'm convinced sometimes kids just don't speak because they feel like they don't have to or want to for whatever reason. I mean ... the kid we used to share our nanny with? Well ... he said basically nothing. Well, not quite nothing - he'd say a word here or there and then never say it again. But he was like Micah with the "L" loser thing. He would clearly understand lots of words people were saying. I have to believe Micah knows words he doesn't say. I just have to.

Anyway, I reiterate Burgh's comment. You go, Karen. You rawck.

Pam said...

I hope you soon get some answers and less run around. That is the greatest picture ever! Micah is such a handsome guy!

CC said...

Hi there. Laskigal sent me here.

I have specialty training in AAC and work in a Lifeskills class with several kids with Downs. I have worked with quite a few kids with Downs who were non-verbal at 5. And all have developed some (if not lots) of speech, but in their own time.

I have not yet had a lot of luck with high-technology AAC devices with a students with Downs for a variety of reasons. Although I love the device that you linked to, that would probably be a waste of money until he has gotten very good at other lower level technology. I'm glad he's going to a clinic soon. That should be very helpful. And make sure it is all addressed in his IEP as well.

I talked about apraxia (briefly) in my last Therapy Thursday post.

Karen MEG said...

What a beautiful picture of Micah.

I don't doubt that he gets a lot more than he can verbalize. I'm so sorry that things aren't moving along as quickly as you need them to be. But Micah is so lucky to have you for his mommy, so lucky.

Flea said...

Based on everything you've said about Micah so far, he seems extremely bright. Brighter than his siblings at times. Hmmm. What does that say about his siblings? ;)

Rachel said...

That face!!! He is so gorgeous. He just glows!!

Yippee for him being on the genius end. No matter what level, special needs or not, as a parent you will always freak and 'over' worry and analyze your children and their behavior. It's part of the whole having your heart living outside of your body thing.

I just want to hug that beautiful boy.

Melissa said...

It truly is horrible how hard you have to fight to advocate for your son. How come things just can't be easier when it comes to our/our loved ones health?

Here's sending you fighting vibes~~~ and lots of good wishes and prayers.

I'm sure looking in that beautiful face helps, LOTS!!

My boys are Army Brats said...

Mom's of special needs kids understand and know more about their kids than anyone else could ever understand. We have a special bond with those kiddos that need us to advocate for them all the time. We can't just trust that they will get things in their own time sometimes. Usually they will but sometimes we have to turn over every stone just to make sure we aren't missing something that might make life a little bit easier for our little guys! Micah is adorable! Hooray for smiling kids!

Good luck!

Diane said...

Good luck and have courage. He is so beautiful.

My boys are Army Brats said...

Oh and by the way, did you check with the school to see what they will provide for him? With the IEP they should provide any assistive devices that would help mainstream him like the one you linked to in your blog!

JennyH said...

I love his eyes (just like his brothers)!

It is a LONG road to get stuff done. I hope you find everything you need to help him out. How cool is that about his SLP!!? I'm sure Aprixia plays a role. It is such a struggle to get the right sounds out. However, once they seem to "get it" the sounds stays.

AZ Chapman said...

I think a good product for speech is tango it was devolved by a dad who son has CP instead of a computerized voice it is a kid voice how cool is that

Debbie Yost said...

Peanut's receptive language is so good it surprises people. She has not trouble understanding anything you tell her. Actually listing to you is another story. She's quite stubborn. Of course, we know how fun that can be!

I'll be interested to hear how Micah progresses with the apraxia diagnosis. I haven't been told that yet, but I haven't been told for sure she has apraxia.

Poltzie said...

I found (at least in Canada, I assume that the States are the same) that anything to do with social services is crisis driven. When advocating for clients I would always create a "crisis", it seems to work.
Luckily, Micah is high functioning and he has a really really great mom, who won't give up! Can I be your kid next please!

Colleen said...

First, you need a biiiiiiig ol' hug.

I'm sorry all of this is sooo slow and bureaucratic and full of weird red tape and people that have absolutely NO sense of urgency. It truly stinks. We've battled similar stuff so we have a good idea what a mess it is, but I know yours is definitely harder and I wish I could help more with that besides hugs and long distance moral support.

And like others of us who've been privileged enough to meet Micah in person, we know that that boy KNOWS. Plus, he's incredibly friendly and was so sweet to share his prized toys with Gavin...I know that is a big step for any child. And he is so incredibly blessed to have a mama like you and such a loving family. Don't worry, it may not be now, but soon that boy will be talking so much you'll wish he'd shush-up. ;)
{{{{{{hugs}}}}}}}

ALF said...

I've said it before and I'll say it again - you are such a strong person. I really admire you.

Tootsie Farklepants said...

Micah has got the most beautiful eyes! I've no doubt that you'll make happen what needs to happen.

Aimee said...

I'm with you.

Loathe, loathe, loathe the beauracracy and the papers and the red tape.

And the head-banging.

carrielt said...

He is so cute. Actually all your kids are very cute.

One of these days he's gonna decide he's ready to talk then he'll never be quiet.

caramama said...

Oh, he's totally a supergenius. You can just see it in the eyes!

How frustrating all that red tape is! I think it's ridiculous that you have to go through so much to get help for someone who needs it. Micah is very lucky to have you as his mama bear who will fight for him!

Caution Flag said...

Apraxia stinks. There, I can say that 9 years after my boy's diagnosis! But those apraxic kids are fantastic at accommodating! I am still praying for you all and that you will be directed to the right source who will makes things happen for Micah :)

mommaof4wife2r said...

micah is so lovely...and so sweet from his pics. he just beams. in his head, there are so many words and you can see his love in his sweet smile. i have 2 kiddos in speech...#3 wouldn't talk either for 2 years. how you made it this long amazes me! i thought i would lose my mind with worry. my prayers will continue for you guys...i just love ur little family (ok its not so little). :)

Romans 15:13 is my prayer for u:
"May God, the source of hope, fill you with joy and peace through your faith in him. Then you will overflow with hope by the power of the Holy Spirit"

imbeingheldhostage said...

Karen, you have four beautiful, happy, healthy children. Three of them talk your ear off and one is absorbing-- how does that make you a failure? You're much too hard on yourself. I think you're doing a bang up job in the persistence dept. when it comes to getting Micah what he needs.

Personally, I'm thinking if you're that cute, do you need words to get what you what?

Karen Deborah said...

Just look at him, he's so bright! A radiant happy child. Medicine has devolved into nothing but technology and tests. Go with what you see. Try sign language. Get some appropriate video instruction and let him watch it on TV. You can make it into a game, you sign to him and let him sign back. One day he may start talking in whole sentences. Some kids wait until they have language figured out to talk at all.
No need to give yourself brain damage (banging) over it. He is what you see, and what you believe. GO with THAT!
Debbie in CA at Wisteria and Roses had twin boys that the medical staff encouraged them to put into institutions and forget about. She refused. Her one son who also never spoke with words anyway, was very very bright and he learned to communicate in his own ways! We are all different. Micah is a gorgeous lovely child and a delight. You teach him, make it into fun. You can do this.
Debbie used to come home crying when "therapists" or anybody else treated her son like an "eggplant." He would act like an eggplant for them and give them just what they expected and no more. I was his nurse and can tell you for a fact there was much much more. He loved books on tapes, movies, music, singing, and, opera! He laughed, and hooted and had a wicked sense of humour at times. He was all boy! He was himself and we who knew him loved him.

just jamie said...

He's SHINING! He's absolutely SHINING!

(Hope you get the device.)