Schedule the eval now, so if you decide later you want it you don't have to wait 4-6 months from that time. If he doesn't need it in 4-6 months, cancel.Originally Posted by Robin0472
Meanwhile, talk to your physician and case manager. It would help to gather evidence and be specific in what you are objecting to and why you feel he requires speech therapy now rather than later.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
Yes Gwenn, he's already on the list. They said his paperwork will just catch up on him on the list, When we get a physician referral it will get attached to his name where he is. I'm not sure if Early-in counts 4 months from when he got tested or when services started. He was tested in October, so maybe I can push the 4 month thing too.
Oh my gosh Thank You, Thank You, Thank You ladies!!! I don't know why I thought this would be harder than it is. I called Wyatt's Case Manager today and told her my concerns. Today was his 3rd day of CBRS and I met her at the Daycare. It was HORRIBLE, well maybe not "HORRIBLE", but just It hurts me so much to see Wyatt's difference between the other children. It hurts me so much. Part of me is honestly worried there maybe something else going on. And I"m crying as I type this. I called his Case Manager and told her whats going on and my opinions and his day care teacher's options and everyone else's opinions. And she was so awesome and nice, the woman that did his part of the Speech Evaluation is out today and and will be back on Monday. They will talk on Monday and his Case Manager will express her concerns for him him in CBRS and request to be in Speech and she said "it will happen". She already can think of a woman at the Children's Center that would be great to work with him. I'm so relieved.... Thank you for giving me the courage.
My DH is deployed so if some of you don't know (I know Gwenn does) so I'm dealing with this all alone, and you guys have been a positive support for me. Thank you!
Any time, Robin. Deployment is rotten enough ... I cannot imagine what you are going through. I know you mentioned Wyatt had difficulties with eye contact. Please keep his doctor up to date on that as it can be an indicator of something else. Trust your instincts.
Ilm so glad your case manager is on top of this.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
She also did say, since Wyatt didn't have any birth issues or prematurity issues that is why they put them in CBRS to begin with. If he would have had the above they would have put him right into speech. "It was the College try" and I did the right thing by calling her with my concerns. With what I told her she did agree he needed speech.
Thanks you guys again!
Thank you for the recommendation for It Takes Two to Talk. I got to Chapter 2 and started to cry. He does try to communicate with us, and the book is helping me understand his personality and my parenting personality.
I've only read to Ch 3 and skimmed through the rest. Thank you for your suggestions.
I found out our state doesn't want to start Speech until they are 2. That is why they push the CBRS. I just got off the phone with his Case Manager, He has a speech evaluation for Feb 8th, So he'll be 2 by then.
Plus his 2 year appointment is on Feb 4th and we're suppose to go over everything with his Doctor at that appointment and get the referral for his Hearing Test.
His Case Manager pissed me off a bit today and when I let her know he's learning more signs, she's still pushing me to make him use his words. If I hadn't read the It Takes Two to Talk, I'd just be discouraged again. I know Wyatt is trying to communicate with me, we just have to break through with each other.
This morning he signed "bath" and made his Animal "agg Agg" sound. I stopped and listened (thanks to the book), I thought he wanted to take a bath, but then realized he was trying to sign Monkey and brought me the Hand, Hand, Finger, Thumb book (Which has the Monkey on the front).
I'm so glad things are going so well with Wyatt and that you got It Takes Two to Talk!
I have to say I'm less than impressed with your case manager - but the Eval you have scheduled will be here soon and he'll be 2 by then, so hopefully it won't matter and he will get the services he needs. Good luck!
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
First off I want to give you *hugs*. Secondly, I've been there. And there is hope. I got Jonathan evaluated by infants and toddlers when he was 27 months old because he wasn't talking. He'd scream, not make eye contact, line stuff up etc. etc. They put him in a 'school' program that's 1 hour a day, three days a week. I go with him and participate. He also gets speech therapy on Thursday mornings.
Let me tell you, in the few months he's been in the program his improvement has been MASSIVE. The important thing is that you're doing what's best for your child, which it sounds like you are. Stay strong, things will improve
Megan (28) and Jayson (31) Happily married 8 years
Well, Wyatt has a diagnosis. He has Childhood Apraxia of Speech (CAS), that currently seems to be stand alone with no other issues. They are stopping CBRS (Community Based Rehabilitation Services; AKA Play Therapy), and they are going to try to get him into the only (GREAT)speech therapist in our area that works with CAS.
I'll have to go onto the Military Base and enroll him in the EFMP (Exceptional Family Member's Program) to gain access and get information for more services for us.
Gwenn, I showed the book, It Takes Two To talk to his Case Manager and his SLP today and they were saying they were going to order some for their office. Thank you SOOOO MUCH!
Any information anyone can give me will be very helpful. It feels good to finally have a diagnosis. I'm glad this group is on here! Thank you so much ladies!
I'm surprised they diagnosed him so young. Elliott has an expressive delay that's presenting as apraxia, but they say he is still too young for an accurate diagnosis. And from what I remember (maybe from Gwenn?) CAS is actually quite rare, and often there are other issues at play (phonological or motor or whatever). But I may be wrong.
Either way, it's great that he is getting to see a skilled therapist! Elliott has been getting private speech as well as EI (but also from a speech therapist) and he has been making good progress. We go back for another private re-eval next week actually.
There are some great books out there on apraxia, and varying techniques/approaches to treatment. I'll dig up my titles (and maybe Gwenn has some too) to see if they might help.
Yes the SLP said it was rare to see CAS as a stand alone cause. His lack of baby babble, the lack of any babble. The few sounds he does make, Lack of words, His knowledge of vocabulary for signs (which shows he knows Language) and he even has created Cat Fish (Which he signs "Cat" "Fish" and says "Mea + -sh") And he'll sign "bird and "Eat" (with no sounds) for bird food when we fill the bird feeders. He's never said Hi or Bye Bye. He attempts to make the shape with his mouth and tries to howl like a wolf during one of his story books, but the sound just doesn't come out. The same with with a phone or a microphone, he gets this really excited look on his face and nothing comes out of his mouth.
His 2 year appointment was last Friday and Wyatt had a bad head cold, we will follow up with him on the 18th and then the Dr. will put in an evaluation for pedi-ENT and a full work up audiology assessment.
-I did mention when Wyatt was born he failed his hearing test, but then 2 weeks later they said he passed, but I was in such a pregnancy haze I couldn't even focus to ask a question.
-I did mention when Wyatt was a baby if he cried for 5 minutes he would throw up. I could never stay at the gym longer than 10 minutes before they came to get me.
-I also mentioned when he was born he had enlarge buccal (fat pads) pads on the inside of him mouth. So when he opened his mouth it looked like his cheeks were about to touch. His CA pediatrician thought it was because he sucked too hard. He still has them. The current Dr. examined him and said he thought he felt scar tissue.
-I has also told the Dr. about my concern for his lack of babble as a baby and lack of speaking and requested. Which also let to the ENT/Audiology appt.
Whew that was a lot.
Robin, nice to see you on here!
I actually have to give credit to Luna for recommending It Takes Two to Talk. I've heard of it but not actually used the Hanen materials myself but based on your experiences and those of some others I've heard/seen recently I'm thinking about laying out the money to go to some of their professional trainings! So thanks, Katie and Robin!
CAS is actually quite rare and back in grad school I was taught that it's existence as a stand-alone condition is somewhat controversial. Meaning that it is most frequently seen in children with other neurological issues. I have seen cases that presented to me as stand-alone CAS, though, so I do think it happens although it's rare. It is also a complex diagnosis to make. But lack of babbling is a huge indicator for CAS.
ETA: This website: http://www.apraxia-kids.org/ is a great starting point.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
Peaking in - So glad he got the diagnosis - and that EFMP is going to get involved! It'll be a lot easier to work with things now that SOMETHING is on paper. (And if it turns otu to not be CAS - at least he is diagnosed with something - so that TriCare will cover!)
Oh and the update with the husband.... He wasn't communicating with me in a healthy manner and his behavior had me concerned and that lead me to contact his command. He was hyper focusing on Wyatt's issues and was causing him to not focus properly on work. He was sent home two weeks ago, to "work on our marriage" then attend a school. I love his bosses, they are amazing! DH was here at the house when the SLP evaluated Wyatt, and we are both relieved.
Gwenn, thanks for the website, his SLP gave it to me today and I was able to look it up a little later after the post. This is exactly what Wyatt has. They are amazed that he made up the word Bird Food (as a form of signs) and made up the word Cat Fish, for a fish he sees with wiskers. He'll signe Milke More Please and will sign Please for something he wants us to give him.
There is just NOTHING coming out of his mouth that sounds anything like talking. He's never sang a song, never said, "hi" or "bye bye" He doesn't call anything by their "word", he may use a sign or use it's sound. Such as "mea" for cat, actually "ish" is the closest word he has for fish. He signs "Dog" and when I tell him to call the dogs inside.. he stands in the door and signs "dog". Loki's name use to be "do di" and Jack use to be "daaa", but he stopped using those when we moved from San Diego.
I found out tonight the Commander's wife is going back to school to be a SLP and that their second son had to go to Speech because of reverse pressure on his eardrums.
I'm still interested in what the ENT and Audiologist Testings will find. Something in my gut is telling me there is something physical going on too. With his ears and/or mouth.. So It may not be stand alone.
It takes Two to Talk, had a TON of good information. Enough to calm a freaked out parent down and realize the different ways your kids could be trying to communicate with you. The Case Manager continues to piss me off, with her comments when we don't have a witness. Now she wants me to put all of Wyatt's toys away in a toy box so he has to take out what he wants and then put it away before he takes another toy and that the way we have his toys arranged on a shelf could be overly-stimulating. That makes my head hurt. I'm sorry I just needed to vent about that.
Thank you so much... I know I haven't been around much.
I went to a retreat last month with Wyatt and then the stuff with DH's work and then they sent him home. It's been a busy 2.5 weeks.. But I think you guys are caught up.
OH YEA, I foud out they had used a "chair" for Wyatt at one of his play therapy appointments and I told the case manager and the SLP about it today and THEY ABOUT FLIPPED!!! I guess they aren't suppose to be using the "chair". But play therapy is about to stop... so YEAAA!!!!, they were just taking him away from the fun he was having with the other kids. I guess yesterday after his play therapist left, he just went to Ms. Tania and wanted her to hold him. Poor kid.
Last edited by Robin0472; 02-08-2011 at 09:14 PM.
Gwenn, you want to fly out to NC and evaluate him yourself? We can give you a tour of Fort Bragg and Pope AFB. ;-) You know you want a NC vacation....
I'd LOVE to but I'm not licensed in NC ... but we could solve that by you coming here!
But honestly, I don't think I need to eval him. From what you've said I think they hit the nail on the head with CAS. Funny, as I wouldn't have predicted that but it's a good dx based on what you described. That's awesome that he's signing so much. CAS is actually a physically based condition, unlike say a general problem with developing speech sounds. Not the mouth exactly but the way the brain talks to the muscles in the mouth. So in a way it IS something physical. But you might be interested in consulting a neurologist to see if the apraxia affects other systems.
Oh, and that play therapy woman is giving me the creeps. Sounds like she does more harm than good! I wonder she still has a job?
I'd actually love to see Ft Bragg as DH has quite a few memories there. Come to think of it, perhaps an ex or two as well! But chances are very, very good we'll be moving to Benning this winter. So maybe we'll take a road trip!
And I'm glad to hear things are going well with DH. That was a hard decision on your part but if his mind wasn't on the job it was the right one. I'm glad he got to be there to see Wyatt's eval.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
I wasn't asking as a professional but as a friend that might be curious to poke the controversial CAS kid and get your opinion as an interested friend and 3rd party? which schools in NC are the front liners on speech? Should I contact UNC or Duke SLP program about Wyatt? I found out there is one other child in this county that the Early-in SLP diagnosed with CAS with a (another issue) but the schools SLP won't acknowledge that CAS is what is really wrong with her. I don't want that to happen to Wyatt, he'll start school age services at 3 or 4 and If CAS is what he has then I want the world to know it is a real thing!
We are 1hr and 30 mins or less from either school. I would think a Grad student or professor would love to follow Wyatt during his therapy. What's you opinion on that?
Robin, E's been getting PROMPT therapy from an experienced, certified therapist for the past few months and it has definitely been helping. There are different levels of certification and training though.
Also, Nancy Kaufman and Pam Marshalla are two well-respected apraxia experts, and they have info and local resource links on their web sites too.
We have a follow-up in April with the pedi neuro we saw last year as well as a second opinion with a different one next month. For us, this is in large part about documenting medical necessity to have our insurance cover his speech therapy, since they are really picky about what they cover.
I look forward to hearing about how he does going forward! I know you must be relieved to finally be able to be proactive for him.
OMG!! Yes! I've had people tell me not to use sign language and make him talk. I have been given so many mixed things to do with my kids it has been heart wrenching. Now I have been given a doggy door of an opening and by GOD I will squeeze my way through any way I possibly can, even if I need to buy a chain saw. I'm going to start bringing out the big guns. OH YEA!! It's ON! Gotta call DH's Case Manager and make a call to some important people in Tampa. I'm up for this challenge!
I've just been told I can request a developmental neurologist referral to Duke and then once he gets evaluated I can request continuity of care, so his therapy would be all through Duke. We're moving in the right direction and I'm arming myself with more information for Wyatt's Dr. appointment on the 18th.
Contacted Wyatt's case Manager to get them to fill out the EFMP forms for the Military Base and to put this information into Wyatt's Medical Insurance Record and DH's record. That way they can never move us to an area that wouldn't/couldn't provide services for Wyatt.
I actually was going to suggest contacting UNC. I know their SLP graduate program is highly ranked but beyond that I don't know much about it - most of what I know of UNC is through their autism work as part of the UNC school of medicine. I'm sure Duke will provide first-rate care. Both are excellent schools.
As far as therapy goes, one of my colleagues who conducts research on CAS referred me to this article for treatment: http://www.asha.org/Publications/lea...1106/f071106a/ It's not a program but principles that any therapy program for CAS should contain.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
I contacted UNC's Hearing and Communication Center. Told them of what was going on and wanted to know if anyone was interested Professor or Grad Student in following Wyatt's therapy as a case study.
I'm also going to contact the SLP division to find out if Wyatt may qualify for any study with the University.
ECU Eastern Carolina has a good program too, but that is a little too far away.
I found out DH's Orthopedic Case Manager use to work as a Pedi Case Manager and had a child YEARS ago that had CAS as a stand alone issue. She told me to check with EFMP and talk to a Pediatric Case Manager at the Military Hospital and see if I might need to enroll him with the Doctors on the Military base, Currently Wyatt has a civilian primary care manager, it all depends on how they code things and if they code them correctly. So I would be working with the insurance directly through the Dr. and might have an Insurance Case Manager that I would only talk to on the phone.
I also contacted the records department of the Military Hospital in San Diego, where we moved from. They never sent Wyatt's outpatient pedi medical records to his Primary Care Manager and I know they will be wanting all of his medical records They should arrive ASAP.
You are on FIRE! Nice work, mama!
Robin, you and your DH amaze me.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
I'm going to enroll Wyatt into DH's dental program today. It should go into effect on March 1st so I'll have his mouth examined by a Pedi Dentist too. I'm going to ask for an eye exam as well since he has never really heald anything close to his face to study it. Might just be me being paranoid but might as well get everything else checked out too. I'm going to refuse his Hep A shot until he has been healthy for 1 month since he's been off and on sick since October.
I'm going to work on a letter to the Director of the SLP program at Chapel Hill and send it Certified mail to ask if the University or a Grad Student would be interested in following Wyatt's case or request his acceptance into a clinical study.
Plus Wyatt is an IVF baby so not sure if this may fall into an IVF category too. We still have 5 more vials of DH's tissue frozen so what are the odds #2 could have the same issue as #1 from the same tissue collection. Just interesting questions all the way around. And if we do have number 2 and the same issues arise, what therapy could start at birth to diagnose and provide therapy to treat CAS early on.
I don't think the odds of it occurring more than once in the same sample would be greater than that between siblings/non-identical twins. How IVF might affect it I couldn't say.
But as for early detection, CAS is an issue specific to the speech act so could not be detected at birth. Research has shown that the neural pathways for speech and non-speech tasks are different for the same muscle groups, and likewise, practicing non-speech tasks provides no benefit to speech tasks. The presence of oral apraxia does not by itself indicate apraxia of speech (although of course in the case of one you would check much more thoroughly for the other). Also, a good diagnosis of either involves investigating the timing and sequencing of motor movements and requires a child who is old enough to comply with the tasks presented. So it's (unfortunately) a wait-and-see situation. Lack of babbling, as you saw in Wyatt, is going to be your earliest sign.
Last edited by Gwenn; 02-11-2011 at 04:16 PM.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
My son's case manager is an idiot! That is all.
I need gallbladder surgery so all his issues are going to be put on the back burner for about a week.
But I honestly think there should be an age limit for case managers.
How hard it is to google an EFMP form? She wanted me to fax it, I said I could e-mail it to her, she said just to bring it in. But then told her I'd
have to go home and print it out, then she goes, you don't need to go home just bring it in and I can print it out here.
OUCH She made my head hurt. I printed it out at home and took it in. She said she had never filled out that form before. OMG, SERIOUSLY?!?!
I need it filled out by them to enroll Wyatt into the military's EFMP (Exceptionally Family Member Program) and possibly register him for Tricare Echo (which provides a heavier level of insurance coverage for children with long term needs).
I'm taking a nap. Thanks for letting me vent.
Okay. .. so she may not know how to open a PDF file..
But I did find out she got Wyatt the SLP that works at the Children's Center. The private (free) daycare for Special Needs Children that was founded before Early-In ever existed. That is SUCH a relief!!! SUCH a HUGE RELIEF!! So at least we won't have to worry about driving to UNC for speech therapy.
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?
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
Posting Permissions
Reply With Quote
