We have COMMUNICATION!

[2boyzmama]

I just am in such a good place with Connor's communication successes lately that I have to share!!!

Background real quick: Connor has 22q deletion (DiGeorge, Velocardiofacial Syndrome). He has numerous physical malformations that make speech delayed. He also has hearing loss that isn't correctable (we've corrected it as much as we can). 22q kids are known to have severe speech delays, it's not uncommon for intelligible speech to be delayed until age 8 even.

We got Connor into the Regional Infant Hearing Program when he was 11 months old. It's a program in our state designed for children that have hearing loss. They send someone to your house as often as once a week to explain all about hearing loss, help with hearing aids, help decide about cochlear implants, accompany you to audiologist appts, decipher audiograms, etc. If you choose sign language for your child (not all parents of hard of hearing kids choose sign language, some want their children only oral) then RIHP will help you implement it.

We chose sign language because we knew his oral speech would be delayed, and we wanted something in the mean time.

Boy am I glad we did!!!

Connor had a session this week, and is working hard on learning his letters both in sign and verbally. As he learns more signs, his verbal attempts are increasing too. 2 years ago he was a fully non-verbal child, as sign language was introduced more and more, it's like it "unlocked" his brain and he slowly started attempting more and more vocalizations, which slowly became verbal attempts, and now are becoming words!!! He signs in full sentences now and attempts to SAY the signs too!!! Without the signs we wouldn't understand probably 90% of what he's attempting to say verbally, but HE IS ATTEMPTING!!! And because he has the signs, we UNDERSTAND HIM!!!

Sign has given him a language. It has given him confidence. It has actually INCREASED the progression of his verbal skills. It's impact on his overall development has been huge! Socially it helps him...he now can play with other signing kids like any typical almost 3 year old. Without sign he'd be "left out" of the verbal world and the signing world, and his social development would no doubt be more delayed than it is. With the confidence sign has given him, he's reaching out in the verbal world more now.

He knows his colors, he's learning his letters, he knows a bunch of animals, he knows a bunch of verbs, he's adding to his adjective list (hot, cold, big, little, even loud and quiet).

As he's getting ready to transition out of EI and into public schools, his RIHP teacher has been doing more evaluations of his signing and she said at her last visit, "his overall communication is basically age appropriate now." WOW. Just wow. He had a profound delay in receptive and expressive when we started with RIHP. A year in he still had a severe delay. Now he only has a mild delay in oral receptive and a moderate delay in oral expressive. When you count his signs, there's no delay. At all.

Also, there's no behavioral issues. 22q is known to cause severe behaviors. Some kids are diagnosed (I think mis-diagnosed) as having Autism. Not Connor. Did we jsut get lucky in that? Maybe. But I think that his ability to effectively communicate is a huge part of it.

I'm just SO SO SO happy that we chose sign, and that it WORKED for him, that he responded to it, that we stuck with it even though it was so slow at first. I know that not every kid will show this kind of success with any therapy method, but wow it is working for Connor!!!

[clicksab]

Ok, maybe it's just the pregnancy hormones, but the waterworks started about halfway through your post! I am so happy for you and Connor! I could just picture you beaming from ear to ear as you wrote this. So often it feels like we are just making educated guesses on what will help our kids, and we just have to wait and see if it works...what a wonderful relief when we find out that our guesses and instincts led us to the right thing!

[didelphus]

That is just awesome!! I'm so happy for him and your family!

[laohaire]

[BookGoddess]

That's so wonderful! Way to go, Connor!

[askew]

I am so happy for you and Connor!

[queencarr]

I'm so happy for you! I can hear the joy in your words. Also, when I am working, I will remember your story and encourage parents of kids with 22q to choose sign. What a positive success story and way to go Connor!!! Way to go Mom, too

[2boyzmama]

Originally Posted by queencarr

I'm so happy for you! I can hear the joy in your words. Also, when I am working, I will remember your story and encourage parents of kids with 22q to choose sign. What a positive success story and way to go Connor!!! Way to go Mom, too

Yes, please do keep it in mind. Like I said, it won't work with everyone, but in most cases it won't harm anything so it's worth a try. And by "try" I mean intensive use of sign language for at least a year.

My only caution, and this is only from what I've been told by momtoalexsarah whose daughter Megan has a clinical diagnosis of 22q, she had a regression in her swallowing because Megan used sign instead of verbal and stopped all attempts at vocalizing when she signed which weakened her muscles and she started aspirating again (I hope I have the details right, you can ask her).

In Connor's case, he was fully non-verbal when we started using sign, as in he didn't even babble, so the signing did not cause any regression in anything oral-motor.

I have been wanting to write to Dr Shprintzen (the "expert" in 22q) because he is very against using sign with 22q kids. He sees it as a "handicap", which I *FULLY* disagree with, particularly when sign is used to supplement oral speech therapy. But, that aside, I really think that Connor having language has helped us avoid the severe behavioral problems frquently seen in 22q. Also, a cognitive delay is sometimes apparent at this age, and again Connor shows none. I wonder if the cognitive delay is only apparent in testing because of the severe communication delay. So I've been thinking of how to present this to him as an example of success with Connor and hope that it may make Dr Shprintzen more open to recommending it for more 22q kids.

I'd be curious what your colleagues and/or professors think about it, queencarr.

[sbgrace]

Yay! What a joy to read.

[KimPM]

[queencarr]

Originally Posted by 2boyzmama

Yes, please do keep it in mind. Like I said, it won't work with everyone, but in most cases it won't harm anything so it's worth a try. And by "try" I mean intensive use of sign language for at least a year.

My only caution, and this is only from what I've been told by momtoalexsarah whose daughter Megan has a clinical diagnosis of 22q, she had a regression in her swallowing because Megan used sign instead of verbal and stopped all attempts at vocalizing when she signed which weakened her muscles and she started aspirating again (I hope I have the details right, you can ask her).

In Connor's case, he was fully non-verbal when we started using sign, as in he didn't even babble, so the signing did not cause any regression in anything oral-motor.

I have been wanting to write to Dr Shprintzen (the "expert" in 22q) because he is very against using sign with 22q kids. He sees it as a "handicap", which I *FULLY* disagree with, particularly when sign is used to supplement oral speech therapy. But, that aside, I really think that Connor having language has helped us avoid the severe behavioral problems frquently seen in 22q. Also, a cognitive delay is sometimes apparent at this age, and again Connor shows none. I wonder if the cognitive delay is only apparent in testing because of the severe communication delay. So I've been thinking of how to present this to him as an example of success with Connor and hope that it may make Dr Shprintzen more open to recommending it for more 22q kids.

I'd be curious what your colleagues and/or professors think about it, queencarr.

When I talked to them this past summer, they were all for encouraging signing, despite Dr. Sprintzen. I got the impression they thought he was just very "old school" in the thought that sign delays verbal speech, despite the research that shows it doesn't. But this program is very sign friendly--the on campus students have access to (and may be required to take, can't remember) excellent sign classes. Do you know if there is something unique to kids with 22q deletion that would supposedly make sign not a good option? Although affecting swallowing in your friend's child...I wonder if that was a fluke or if it would be typical? As far as I know, the research about signing helping oral language should apply...so kids shouldn't usually give up the oral, just supplement as Connor has done.

[kme]

Yea! What a great post.

[momtoalexsarah]

Congradulations - that is fantastic the speech will get clearer - and the sign will definatly help you understand what he is saying.
The reason that sign for Megan was not a good option was because of a couple things -
- the degree of clefting - it was quite severe, a grade 2 cleft of the soft palate and a moderate sized submucus cleft of the hard. We knew that there was muscular involvement - and the doctors where hopeing that they would be able to buy time to assese it further and posibly wait on repair untill she was 4-5 with a P-flap.
In order to but that time - we needed to keep the muscles working, even though they where not where they should be placed.
Whe she started Sign she stoped all verbal communication and the muscles where atrophieing - this was evident by the swallowing issues.
Megans personality plays a HUGE roll in this - if another way is easer she will take it. We are contemplating cancelling her next 10 week set of ST because she is refusing to do any of the articulation work - which is what we not have to work on.
I can understand about 75% of what she says, on a good day. Last week she had a cold, an irritated throut from vomiting, and bronchitis (broncial spasms included). She wasn't hearing well either -her left tube is pluged and she has fluid and is having reocurring actute ear infctions - fun eh.
Last week I understood maybe 10% of what she said - it was awful, she was saying basic words and I still wasn't getting it.
Sign I think should be started - if it works out and the resourses are available then thats wonderfull. I think that were it may need to be used with caution is incased where the clefting is possibly severe.