Wyatt's Speech...

[Robin0472]

That's awesome about the preschool!!! I'm very excited for you.

And my head hurts just trying to make sense of the part about bringing in/printing out the form. Yikes...

Someone at work told me yesterday she didn't know how to cut and paste. Maybe we could put the two of them together?

I don't think Wyatt is severe enough to qualify fir the Sandhills Childrns Center, but they have their own team of O.T.'s, P.T.'s, SLPs and all sorts of acronymn people under the moon. Wyatt's home day-care center is about 2 miles down the road from the Children's Center. So the SLP will go to Mrs. tania's house to work with him. I may look into seeing if he qualifies for the SCC. I do love Ms. Tania though. Oh and get this... One of our friend's in TX that heads a non-profit... Her nephew had CAS!!!!!!!!!!! She asked me if I as sure because she was told it is so rare she thought it was crazy Wyatt had it too. But her Nephew had upper body muscle weakness along with it. INTERESTING!

[Luna]

You're such a lovely mama Way to advocate for your kiddo. Off to bed, but just wanted to say you're making great strides to helping Wyatt.

[Robin0472]

You're such a lovely mama Way to advocate for your kiddo. Off to bed, but just wanted to say you're making great strides to helping Wyatt.

Thanks Luna!

[Robin0472]

He signed "water" today!!!!!!! He signed water. I haven't seen it yet but the Day Care Teacher told DH. I could cry! I am so happy!

[Gwenn]

[Robin0472]

He just signed "book", I've never seen him do that before either! He signed "book" for my iPad!

[Gwenn]

So incredibly cool! I'm so happy, Robin.

[Robin0472]

Wow, just got off the phone with DH's old O.T. From Walter Reed Army Med Center. I wanted to fill her in on Wyatt and realized I probably haven't talked to her in a year. She got her PHD last year in OT and wanted to pick her brain. She is meeting with a friend of hers that is about to finish up her PHD in SLP and goes to the school with the recent former director of the American SLP Association. She's going to talk with her about Wyatt and pick her brain. I'm hoping someone will have a contact at UNC to have Wyatt followed as a case study. But maybe something better might happen. I ordered Signing time because one of the mom's in our Feb 09 group is deaf and works at a school with children that have Apraxia and she told me to get the videos and sign with him as much as possible and try to start engaging him in back and forth conversation. Who knew I'd get so much accomplished on a Saturday before noon. I did get, The Big Book of Exclamations and Sammy Learns to Talk, which has a snake and Wyatt can kind of make a T/S sound for the snake on Letter Factory.

[Gwenn]

That's great, Robin! You are such a great advocate.

I found the website for UNC's speech department and here is a listing of current research projects. I didn't see that anyone was researching Apraxia right now. Unfortunate - I know there's a guy at University of Arizona who would snap Wyatt up for a study he's working on (if he's still recruiting subjects - he was a year or two ago) but faculty research interests can vary widely. I tried looking up the same info for Duke and didn't get very far. All I found was general information.

[Robin0472]

That's great, Robin! You are such a great advocate.

I found the website for UNC's speech department and here is a listing of current research projects. I didn't see that anyone was researching Apraxia right now. Unfortunate - I know there's a guy at University of Arizona who would snap Wyatt up for a study he's working on (if he's still recruiting subjects - he was a year or two ago) but faculty research interests can vary widely. I tried looking up the same info for Duke and didn't get very far. All I found was general information.

Is he a PHD? Maybe a grad. Student here could be a go-between? I don't know how all the medical works like that.

[Gwenn]

Is he a PHD? Maybe a grad. Student here could be a go-between? I don't know how all the medical works like that.

He is a PhD. I don't think so, though - it was a specific study where they were giving direct therapy and evaluating the effectiveness of the treatment. I don't think they could do it long distance because there would be no way to verify the treatment was being given according the the standards of the study. Also if I remember right the study he was working on last was for children 3-10. But let me ask around for you. I don't know him as he's new on the faculty there but I know one of his co-investigators who is also a PhD and CAS is her particular interest. She actually came in and delivered the lecture on CAS in several of my courses in grad school because she knew more about it than my professors although she was a PhD student at the time. She might have information for you that I don't have.

[Robin0472]

I followed the Links that Swannie gave me (Thanks Swannie) and ordered a few books to educate myself on CAS. I've also looked at a few groups online, but so many of the kids have other physical issues I know I shouldn't compare Wyatt to them. Hopefully the books will be here on Monday.
I did order two e-books about a son that was late talking as a stand alone condition. They were the only ones I could get my hands on ASAP.
Both by Thomas Sowell.
I really wish Pam Marshall had her CAS book on Kindle format. And I wish more authors had their books in electronic format.

[Robin0472]

Yesterday we went to Wyatt's Dr 's appointment for his Follow up and get his referral and his appointment was really on Monday. They wanted to reschedule to Thursday, but I'm having my gallbladder removed. So now we have to wait until next Tuesday. I feel like such an idiot!!!

[Gwenn]

Yikes! Well, at least you don't have to wait too long before they are able to get you in again.

[Robin0472]

Gallbladder surgery went fine for me today. Wyatt is at a friends house with their three kids and I know they will be getting him to scream like never before! They have a ZhuZhu pet that he loves and starts him self and he squeals so loud he has everyone cracking up. He makes so many more and new sounds when he's being played with in a rougher manner and chased by our older kids.
His 1st session with the SLP is Monday at 10:15 at our house. I need to start my chart soon before she comes.
Did I mention that there is a woman in our Church married to an Army guy that use to be a sign language interpreter? She actually use to work on the same campus 12 years ago that our Feb09 Mom (who's deaf) works at now. The Feb 09 Mom is the one that suggested that I sign with him and then I went to talk to Joanna at church and she want to work with me, Dh and Wyatt and start teaching us simple back and forth communication dialogs. Such as What's your Name, what color is this, what shape is this, what is this, what animal is this.
DH talked to his old CoWorker in San Diego and knew a friend's child that had CAS. He didn't talk until he was 12 but signed great. And my sign language intrepreter friend's youngest daughter is 2.5 and has a summer birthday so Wyatt and Alyessa will start Kindergarten at the same time! As long the husband doesn't go to the PT school in San Antonio. But Wyatt can have a little friend to talk to and now I think the mom realizes she is going to work with her 3 kids more in signing.
I just feel like things are slowly coming together.

[Robin0472]

I'm making a chart of sounds/signs/meanings for Wyatt's SLP meeting on Monday. So far I've come up with 42 Sounds and/or Signs he uses to communicate with us!!! FORTY TWO!!!

[Gwenn]

Awesome!

[swannie]

He makes so many more and new sounds when he's being played with in a rougher manner and chased by our older kids.

E's current SLP is in a practice that also has an OT on staff, and a mini OT gym, and he also is more vocal when using the equipment (climbing, jumping, swinging, etc). Might be something to investigate for Wyatt too? Gwenn?

[Gwenn]

E's current SLP is in a practice that also has an OT on staff, and a mini OT gym, and he also is more vocal when using the equipment (climbing, jumping, swinging, etc). Might be something to investigate for Wyatt too? Gwenn?

Worth looking into. Robin, you're taking him to the neurologist, right? I think the neuro will make a referral for OT if he thinks it's appropriate.

[Robin0472]

I missed his FOLLOW-UP pedi appointment last week. With my surgery It was delayed until Tuesday. Monday, I'll meet with the SLP. and ask about the Developmental Neurologist. I plan in getting a referral for ENT/Auditory Evaluation,, Ophthalmology and still working on Dental (no referral needed). Is there anything Else I'm missing out on?

I've read
It Takes Two to Talk
Becoming Verbal with Childhood Apraxia, Pam Marshalla
currently reading Late Talking Children - Thomas Sowell (on Kindle)
Then The Einstein Syndrome - Thomas Sowell (on Kindle)
Any other books that are a must read? The Late Talking Children book has examples of how the school districts have tried to put late talkers on the Autism spectrum to increase their funding and follows different stories of different late talking children. mostly around the early-mid 90's

Also got The Big Book Of Explanations
Sammy Learns to Talk
Neither one seems to.interest Wyatt. Probably because he knows what I'm up to.
Everyone just loves him so much and tells me he's a joy to be around and just likes to do his own thing and never causes problems.

He did attempt to cut his own hair with a pair of dull tipped scissors. Any more advice or books please!!!! Give me any suggestions. I'll ask about OT. I'll also ask the SLP if Wyatt may benefit to going to the Sandhills Children's Center.

on a Sad Note, it looks like the Sign Language Interpreter friend will be moving away from the area if her DH gets PT school in San Antonio or not.

[Robin0472]

Everyone could save a ton of money if the SLP just shadowed Wyatt around with two families of ours that have older kids that both LOVE having Wyatt around and making him laugh! No special OT equipment needed. But I'll ask. (Said in Jest).

[Robin0472]

Wyatt's SLP and Case Manager told us today to apply to enroll Wyatt into the Sandhills Children's Center. I have mixed emotions. DH and I are on our way now. I
Didn't think he was that severe....... Reality check? I need a hug.

[Robin0472]

The head of the SLP at the Sandhills Children's center is a woman we know. Her husband was on my Husband's military team in 2004 during an IED explosion. Her DH was in the Turret of the Humvee my DH was driving. But We didn't know she worked there until today.
Remember, we just moved to this area in Aug/Sept and was in San Diego for 2 years before that. We haven't seen her or her husband in years! SMALL WORLD!!!

[Gwenn]

WHOA, small world!

Since your asking for hugs, then you can have one but look at it this way. This will get him around other children (as you described) and with skilled help while there. It's not a matter of how severe he is, it's a matter of what best fits his needs.

[Robin0472]

The population of our whole county is 85,280. It is a small! That is why it's so crazy.

-We got the Baby Signing Time DVDs and CD's today! I'm excited for when Wyatt gets home.
-I got a call from the Early-In SLP that evaluated/DX'd Wyatt and told us about another 3 year old in the
county with Childhood Apraxia of Speech and has offered to talk with us.
-I'm excited, but I feel like I have so much to learn.
-We had Wyatt's follow up today. He'll get the Referral for a Full ENT Evaluation, FULL Audiology Screening and Referral to an Optomologist.
-We were given the name of a Dentist in Chapel Hill that knows sign language and works with Sensory Impaired and Autistic Children and suggested we take Wyatt there, for dental work. We have to pay out of pocket first and then get reimbursed from our Dental Insurance, they don't bill directly. So some of it would be out of pocket.

[Gwenn]

Wow! That's great! Too bad you have to pay out of pocket for the dentist but he sounds like a great resource.

[Robin0472]

E's current SLP is in a practice that also has an OT on staff, and a mini OT gym, and he also is more vocal when using the equipment (climbing, jumping, swinging, etc). Might be something to investigate for Wyatt too? Gwenn?

I thought of you when I saw the gym and PT room at the SCC. We are truly blessed we moved to this county! Everything may not be going as fast as I'd like, but it's not up to me. I just have to give it up and realize I can't control it. One of the older rooms had a hammock/thing for one of the kids for nap time. DH and I were talking about it and we have to look close at our finances and I may have to get a part time job.

Another q: for you ladies.... When can a child be dx w/ aspergers? What is the difference between normal 2 y/o behavior and not normal. I've been saying Wyatt is just being an active boy, but for example in the church nursery, everyone was sitting doing a craft project and Wyatt just crawled around following his shadow (he had never done it before and has never done it since). But now after talking about my niece in my other thread, DH and I realize we have odd behaviors on both sides of the family. What is NORMAL?
Or am I thinking too much?

[Gwenn]

Well, NOBODY is normal. And everyone has odd behaviors - I certainly wouldn't worry about chasing his shadow (once) at 2 years old. But if he's obsessively chasing his shadow as an alternative to interacting with people, then I'm more concerned about it. What concerned me about your niece and would be a concern for autism spectrum disorders is difficulty with social relatedness (i.e. a teenager not realizing that licking her hands in public will affect how others think of her). A 2 year old doing that? totally normal. But if you see a pattern in your family and are concerned, you can get it checked out. You're already going to see a neurologist about the apraxia, right? As the neuro what he/she thinks about it. It's not too early to test for autism spectrum disorders, although Asperger's might not show up at this age.

[Robin0472]

Well, NOBODY is normal. And everyone has odd behaviors - I certainly wouldn't worry about chasing his shadow (once) at 2 years old. But if he's obsessively chasing his shadow as an alternative to interacting with people, then I'm more concerned about it. What concerned me about your niece and would be a concern for autism spectrum disorders is difficulty with social relatedness (i.e. a teenager not realizing that licking her hands in public will affect how others think of her). A 2 year old doing that? totally normal. But if you see a pattern in your family and are concerned, you can get it checked out. You're already going to see a neurologist about the apraxia, right? As the neuro what he/she thinks about it. It's not too early to test for autism spectrum disorders, although Asperger's might not show up at this age.

Thanks Gwenn, our Primary is going to wait for the ENT eval before Neurology. Hope to get the referrals next week.

[Robin0472]

We got the approval for Audiology Exam yesterday, and I got his appointment for Audiology & ENT for the 21st of March. Hoping the ENT approval will arrive today or tomorrow in the mail.
Yesterday was our first day of Speech here at the house. She said he did 100 x better here than at the daycare last Wends. She did mention the eye contact.
We set Wyatt's table outside and she kept his attention with Fruit Loops. They explored the yard and the pool area and he enjoyed showing off his silliness. I really like her a lot, they just seem like a wonderful fit. She is going to try the daycare again on Wednesday and if he doesn't cooperate then we'll do both days of therapy at the house.