Found out more information about the woman in the SLP in the school age system that doesn't agree that CAS is actually a real issue, this is another reason EI is trying to get Wyatt into the Private Developmental Day School. I hate he'll have to leave Ms. Tania. But I know it will be a great opportunity for him.
Very good update! That's great he can stay in the same center for EI and pre-K services - we don't have anything like that here other than private services.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
The school was founded by the parents in the county before EI existed. Many Daycares could not provide the level of care some of these children needed and some Daycares refused children with severe disabilities. So the parents and the community got together to raise money for the Sandhills Children's Center. They raise most of their operating budget from community Fundraisers. They operate the non profit developmental day school and they have some slots for Main streamed children for regular daycare hours.
It looks like there is a Childhood Apraxia of Speech Workshop/Conference in Baltimore on April 15. DH said I could go.
That is very cool - about the center and about the conference. Are you going?
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
I think I am. I'd have to drive up that Thursday Before. But Anything I can get my hands on at this point.
Hope you enjoy it! Wish I could join you but the timing is terrible.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
There is going to be a PROMPT workshop in Smithfield NC in June or July. There is also the CAS annual Conference in San Diego this summer.
Gwenn is there a difference between an Apraxia dx from a SLP vs a Physisian diagnosis? One at the parents in our support group said their Dr. Wouldn't dx their son till he was 5 for apraxia. This kid was so sweet. He came up and waved to me just like Wyatt. He sat beside me and we were going over story board pictures and we were having fun making the sounds back and forth. Then they had Voel Animal cards for AEIOU. He was leaning on me by the end of the night. His little sister turns 2 in June and makes more sounds than his brother. He had surgery on his throat and I didn't get the answer if he was talking before the surgery or if the surgery was to help the talking.
We had a SLP guest speaker who does the PROMPT work and some other stuff. She was fantastic! I loved watching the video. I'm hoping Wyatt's SLP can go to the PROMPT training this summer. That would be awesome! There were 3 other Programs she used, the Kaufman cards Swannie told me about in a previous post, Prompt and something else that had to do with picture/sound cards. The main woman, is trying to get her son to have AaC training on his iPod, but the school won't approve it. It is sad that UNC is one of the best SLP schools yet the state's school system is not up to date on current technology. I'm interested in finding out more about this SLP in the School age system. I may talk to his case manager for more info. I need to star looking at local law yes too.
Gwenn what is your area's regulations if a mother wanted to hold her child back another year before going into K? Are services still allowed for that child?
I'm not exactly up on how a dr makes their diagnosis but the easiest way to describe how I work is that I diagnose function - so I can diagnose something like stuttering because I am looking at the speech outcome. I can diagnose CAS through looking at speech outcomes and I look closely at error patterns, consistency, and motor productions. A doctor looks more at structure and the physical movements without paying as close attention to the speech outcomes as I do, if that makes sense. That said, to get a child to cooperate with the tasks I would give to explore consistency, rate and rhythm of speech production would require an older child than Wyatt and although I wouldn't make 5 a magic cut off I would feel a little uncertain about diagnosing a child under 2 ... that said, everything you've said about his diagnosis and response to treatment sounds consistent with CAS so I'm not questioning Wyatt's diagnosis in any way.Originally Posted by Robin0472
The iPod/AAC issues is a BIG one ... a lot has to do with the medicaid reimbursement guidelines as they will only approve dedicated devices. Meaning they would rather use taxpayer money to buy a $5,000 device that can only be used to generate voice output than spend $500 for an iPad and software that might be used for other purposes. It's insane. The big device companies actually make ones that run on Windows and can email/access the internet but they have to sell that feature "locked" and the user can chose to purchase it later and "unlock" it if they want it. So I don't know that any state is purchasing iPads yet. But I understand what you are saying. The program I went to here was #6 in the country while I was there, now #4, and our state services are pathetic.
Not certain about holding a student back ... we are required to provide special ed and related services and I think for something like a child who got speech by appointment they wouldn't care if he didn't enter Kindergarten as it wouldn't affect class sizes or the service provider's caseload. I suspect my district wouldn't offer a special education preschool class to a 5 year old, they would instead suggest resource support from the teachers in Kindergarten or a self-contained class if necessary. But they are required to provide services to all children through age 21 so it would simply be the details those services were provided in you would be arguing over. If worse came to worse a parent could "homeschool" for that year and be entitled to support services from the district (possibly not academic but definitely speech/OT/PT) and then enroll in Kindergarten at 6 - but again, it wouldn't be in the special class. This is all just guesswork as I haven't been confronted with that exact situation yet.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
Thank you, one of the dads seemed put out that I was calling Wyatt Apraxic when Duke MD wouldn't diagnose his son until 4.
I ment to sat iPod touch not iPad. The main person's 4 year old son can order his own chicken nuggets and fries at McDonalds. But the school system won't authorize the device for school or provide someone to train the child how to use the divide in school. He was DX before 2 and has other major issues other than CAS.
That Makes sense about the K. I couldn't understand why she just didn't do 2 years of K. But not sure if they have been pushing the Special Ed Programs.
PROMPT can only be taken by SLP. I think that is a little unfair. But a $700 class. Wow, I think Wyatt would benefit from PROMPT therapy a lot. I had no idea what it really was, but I saw clip videos last night and it was WOW!
Robin, you might find this interesting. This is the American Speech-Language Hearing Association's position statement on diagnosis of CAS. They feel that it is the SLP who is the one to appropriately diagnose CAS, not the doctor (where the doctor would be the one to appropriately diagnose oral apraxia or limb apraxia as non-speech tasks). It also talks about the age at diagnosis issue.
And the communication software on iPod Touch/iPad is the same. It's a big issue and actually the ASHA AAC journal just dedicated an entire volume of their journal to iPads/iPods. Just got it in my email today and am looking forward to reading it. But yes, most schools use medicaids funding guidelines and medicaid refuses to consider those "medical" devices because someone might play a game on them. That said, my school district is attempting to make some available within their budget. I had two kids on the waiting list last September and they never did get one.It is the policy of ASHA that the diagnosis and treatment of CAS are the proper purview of certified speech-language pathologists with specialized knowledge in motor learning theory, skills in differential diagnosis of childhood motor speech disorders, and experience with a variety of intervention techniques that may include augmentative and alternative communication and assistive technology. It is the certified speech-language pathologist who is responsible for making the primary diagnosis of CAS, for designing and implementing the individualized and intensive speech-language treatment programs needed to make optimum improvement, and for closely monitoring progress. Children with developmental disabilities and disorders with high rates of comorbid conditions present a significant challenge for differential diagnosis of CAS, particularly in children under 3 years of age. Care is needed to document coexisting conditions and to describe children’s developmental skills and communication profiles. When research of the type called for below yields the appropriate level of evidence-based support for specific clinical recommendations and guidelines, including information on the youngest age at which CAS can be diagnosed, this information will be made available in ASHA’s policy documents (i.e., knowledge and skills statement and practice guidelines). Until such resources are available, differential diagnosis of CAS in very young children and in the context of neurological and complex neurobehavioral disorders may require provisional diagnostic classifications, such as CAS cannot be ruled out, signs are consistent with CAS, or suspected to have CAS.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
This is also interesting. From this site:
Neurologists Should Not Diagnose Apraxia
It feels as if every time I turn around there is another non-verbal 2 year old getting this diagnosis from a well meaning Neurologist. There seems to be many Neurologists who will diagnose any child who has a normal neurological exam at age 2 and is not talking with Childhood Apraxia of Speech.
I am not blaming the Neurologists for this. Most of the time, they are put in this position by Speech Language Pathologists who don’t feel comfortable giving the diagnosis themselves.
Unfortunately diagnosing this severe speech disorder is not easy. In fact there is no one agreed upon assessment tool within the field to make the diagnosis. Because of this many Speech Language Pathologists do not feel as if it is their role to make this call when in fact it is.
Expertise Matters
Of course the Speech Language Pathologist should have extensive knowledge of childhood motor speech disorders to properly diagnose and to treat Childhood Apraxia of Speech. If they don’t, a referral to Speech Language Pathologist who does is the more appropriate next step.
While the person who makes the diagnosis may seem unimportant, it really is extremely important.
A neurologist can rule out any other neurological causes for a severe speech disorder; however they should not be asked to make the diagnosis of Childhood Apraxia of Speech. They are not experts in speech and language disorders, only Speech Language Pathologists are. Neurologists have plenty of other areas in which they are the experts; this is not one of them.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
Thank You so much for your info. The Children's Center Called and I talked to them yesterday. The Admissions Director and the b-3 floater teacher will come to the house Monday to see Wyatt in his natural Environment. I Let his SLP know about the Prompt Class and she shared the info with the SLPs at the Children's Center. She's Contracted but her office is at the Children's Center. I still have mixed emotions about him leaving his Daycare. He loves it there! I'm wondering if he can still go to her house after school. The more people he trusts and interacts with the better he'll be socially. (in my opinion). The teacher from the school will let me know about Sign language instruction to the rest of the class.
We went camping last weekend with our church group and an incident happened with Wyatt and another little girl. They were sitting face to face in the hammock and she kept popping him in the face. I was telling her it wasn't nice to hit and then Wyatt goes "Owwwwww". Really loud, then started to laugh. It was the funniest thing to have Another 2.5 y/o as Wyatt's Speech Therapist. It is really hard not to notice he plays different than the other kids. But he is the youngest and the other 2.5 y/o is really ahead in speech. I met the other Woman's CAS son, and she was surprised in all the new thoughts on Apraxia. The oldest son is In college but is just now being tested for ASD. The other son's aren't Apraxic they have all received Speech because the oldest son taught the little brothers to talk. So they followed his model of speech production.
This group has been an awesome resource, thank you to all of you for your info and your support.
Last edited by Robin0472; 04-05-2011 at 05:59 AM.
My OT friends said that Wyatt has Sensory Seeking behaviors. He's make snow angels, carpet angels, rock angels. He'll get down and sniff rocks and put his mouth on them. He LOVES to swing. Which could have been a connection with Our friend and him in the Hammock.
He's signing butterfly for butterfly, bugs and bugs that fly.
His Case MAnager and the Children's Center staff came to the house Momday. I think it went well. I'll know more in May. The year will start June-Aug.
Today I had about a 45 second back and forth dialog with Wyatt with eye contact. It was roaring and his fish sound. But it was a dialog with turn taking. So cool!
Yay for turn taking!
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
We are doing great! Well as great as can be. I've relaxed a lot. And I'm able to enjoy my boy a lot more and just enjoy his uniqueness.
I found out two weeks ago, he's been accepted to the Children's Center Developmental Day School. We got the call yesterday that they want him to start early since he is the only child that has his packet and medical evaluations and he's already in child care. He has 10 children in his class, 3 with developmental delays and 3 teachers, not including the PT, OT, SLP Staff. I think we may have mentioned that we know we found out we know the head SLP for the school and my Acupuncturist sends her kids there in the traditional Day Care Program.
So the Developmental Day School only goes until 2:30 and then there is Mainstream Traditional Daycare. They may be having little playgroups with Wyatt and other Hearing impaired kids from different classes to allow Wyatt to learn more Sign Language.
DH and I have talked about it, and I talked to the lead SLP at the center, and we have agreed to donate the PROMPT Workshop Fees to the school for his SLP to become trained in PROMPT Therapy. The June 6th workshop is full, but there is another Workshop in NC in August. We really want Wyatt to get PROMPT and we figure what we would pay out of pocket would be more than $700 for private therapy, which he will now get in this school until he starts Kindergarten.
On a strange note. DH is military as some of you know and the Head SLP at the school her husband use to work with DH years ago. Out of the 10 guys that use to work together. Our child has CAS, their child has a genetic mutation that has only been seen in Japan after Hiroshima, and there is another guy who had a daughter born without proper nerve ending to her bowels and had to have her colon reconstructed and that is only seen in children with Downs Syndrome. I've been poking my nose and stirring the pot in case this stuff might be connected with the Military service. I contacted the IVF clinic (which is through the military hospital) and an article on Heavy Metal Exposure in Iraq, Afghanistan and Kuwait, came out out two weeks ago from a Navy Study, and sent it onto the IVF staff and they seemed VERY VERY interested. They also said they could do genetic testing if we needed it. Definitely things that make you go HUMMMM...
I want to catch up with everyone, but we are on our way to an Apraxia Support Playgroup Meetup about an hour away. **HUGS** I hope all is doing well!
Last edited by Robin0472; 06-06-2011 at 09:05 AM.
Thanks for the update! The program sounds excellent. Now you've got me totally creeped out about the heavy metal exposure (and I was already creeped out about that after doing a research project on lead poisoning in grad school).
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
Also, as Wyatt has gotten a little older, there are definate soft markers for some other issues. The lack of eye contact and the sensory seeking behavior is still there. He will disappear and we'll find him face down in a bed of rocks, smelling them and rolling them with his nose. It's just one of his quirks. Looking forward to him starting the school because they can introduce weighted vests and compression garments to see if he can concentrate more. I've been researching Developmental Pediatricians at Duke and UNC and think I've found one I like.
Our SLP friend also suggested that I get Wyatt tested for Allergies, since he still does not have firm poops.
Keep us posted...
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
Amazing changes going on here. I've started giving him Multivitamins with fish oil and no artificial colors. I've been cutting back on the artificial colors all together as much as I possibly can. WE have been swimming in our pool every night for about a week. And I really think there is a swimming connection not sure if it is exhaustion/pressure of water on his body/deeper sleep from being exhausted/etc. In the pool he uses more eye contact, and every day he's been making more sounds. He made noises about 50% of the drive to his daycare today.
Tomorrow we go to the Children's Developmental Day School for an intro to the SLP room and he gets to play with everything. Then Wednesday Morning, he gets to go to his classroom and meet his teachers. DH and I go back Wednesday afternoon for our meeting with Admin, Teachers, SLP, and CDSA. Case Manager.
Swimming can be a great thing. Glad you're seeing progress!
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
We had an AWESOME day today! We went to meet with Wyatt's new SLP and they all think he is cute and adorable. They seemed to be stepping on eggshells when they mentioned bringing up an OT evaluation. Wyatt went right into the Speech Therapist's room and made more noises than DH and I have EVER heard him make and more signs he had ever made. The OT came in to say "hi" and we chatted. We talked to her about the swimming/more sounds connection and she said there is some sort of sensory/sound connection with some kids and is definitely interested in evaluating him further. She even asked me if it would be OK to do a PT evaluation. I told them, yes I know something is up with my child. Please don't sugar coat it, do what you feel is needed.
Tomorrow he meets his teacher and had classroom interaction and DH and I go back at Noon for our meeting with the staff without Wyatt. This is such an awesome school. But the catch-22 is, if he does really good, he gets bumped out of the developmental day program. But right now he should be okay until he turns 3.
Sounds like you're in great hands! Awesome news about the OT!
Did you ever get a neurologist referral? I remember you were waiting to hear something from the ENT...
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
Oh and if they do find that he does have Sensory Seeking issues they will start him on what they have as a Sensory Diet and will ask us to follow it at home. THIS IS WHAT I ASKED AT HIS School Physical appointment last week and they didn't have any answers for us!!! UGGGGGG!!! So I'm going to start getting more information! I'm excited. His SLP want to borrow our Baby Signing Time DVDs and I'm going to get her borrow the Pam Marshalla book: Approaching Childhood Apraxia of Speech.
No, his medical staff LPN and MD were going to "discuss it". I'm going to wait until he's at the Center for a few weeks and then they can give me their observations and give me more technical terms for his behavior before I seek a specialist. That way I have professionals backing up and using professional words to describe his behavior.
Excellent about a sensory diet. That's a great thing.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
If they do any formal evaluations ask for a copy (you should have one anyway for your records). That way you can bring the copy directly to your doctor. I unfortunately can't make medical referrals in my position but I will often write specific key words into my evaluations that the doctors will understand.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
Oh and there is a little girl at Church that has the biggest crush on Wyatt. Wyatt is going to be in her class!! Oh her parents will hear all about it tomorrow!!!
Classroom meeting didn't go that great today. He wanted to go back to his SLP's room and play with her train. He kept signing train. He found the classroom's dinosaurs and trains. They were doing group waterplay inside, then we went outside and played on the playground. He'll be in this room until August then he will move with his classmates to the Older 2's room. I kinda think he knows what's going on. When I dropped him off at his Daycare he just snuggled into me and didn't want to let me go.
DH and I went back at noon and met with the CDSA Casemanager, CBRS, SLP, and Administration Director. There has been a change in IFSP, they are going to bring back CBRS 3x a week (Want to do it 5 days a week, but state cuts we'll have to pay a percentage of the cost), SLP 2-3 days a week, and he'll have an OT and PT evaluation for Sensory Issues and Knowledge of Body Awareness. They will observe him for awhile and then let us know who/what/where they would like to send us to a specialist. We'll meet back up in July/August which will go over evaluations for PT, OT and then it will be time for him to be re-evaluated by the psych. Also we'll start going over the the transition from EI ITP (Infant Toddler Program) to Pre-K program. Which will still allow him to stay at this school. With that current State budget cuts we are so lucky to be in this school.
Tell me about budget cuts. We've gone to a sliding scale for EI services here, too, and I've had parents tell me their kids have had no intervention because they made too much money for the cutoff but couldn't afford to pay for it. Drives me crazy.
Sounds like you have a good plan. And don't worry about his reaction to the classroom. This classroom should be set up specifically to help with issues like that. In the meantime, the OT and PT evals should provide a lot more information.
Me (38) DH (45) & furbabies * m/c 7/08 4/12 11/12
NC NOW requires 2 months of pay stubs or a letter from your Employer for proof of income. AND proof of your Social Security Number. If you don't have a SSN then you have to pay 100% of costs. So we got all that information to them today. Should be interesting. Plus the school only takes Military Base Pay, not the extra pays, which is nice. SO we only pay $425 or $475 a month for tuition for the school. So he has 10 kids in the class (3 with delays), 1 lead teacher with at least a Bachelors, and 2 assistant teachers. The CBRS is a floater, SLP has her own room, PT/OT has their own rooms and there is an indoor gym. And the PT room LOOKS FUN! I want to go in there!!Tell me about budget cuts. We've gone to a sliding scale for EI services here, too, and I've had parents tell me their kids have had no intervention because they made too much money for the cutoff but couldn't afford to pay for it. Drives me crazy.
Sounds like you have a good plan. And don't worry about his reaction to the classroom. This classroom should be set up specifically to help with issues like that. In the meantime, the OT and PT evals should provide a lot more information.
Posting Permissions
Reply With Quote
