Wyatt's Speech...

[Gwenn]

Good luck! That is surprising he's inpatient.

[Robin0472]

I know I'm really emotional about it. I think they are using him as a teaching case to Identify possible Tuberous Sclerosis Complex. Plus now all the Subspecalties come to him. And they will have to work as a team. It's actually an awesome opportunity. Plus no fighting DC traffic or fighting for parking. If they want to use the imaging at 2am they can. Just worried about the boredom factor.

[Robin0472]

Sorry I haven't been around, I am now 32 weeks and super exhausted. About to up my SSRI meds. So much has been going on.

Dec: All imaging/labs from Walter Reed came back normal. Met with neurologist - thinks he will socially and verbally make much improvement by age of 6.
January: took the Wrightslaw home course (IEP Laws), more IEP evaluations, IEP meeting/placement.
Feb: Developmental Optometrist to look at the need for Yoke or Prism Lenses (non-compliant). Feels he is PDD-Nos. Taking Parents as the ABA Tutor workshop, Special Olympics swimming started up again. Talked to Genetists and he said all looked normal but follow up in 6 months. Met with new Developmental Pedi. Focusing back on Childhood Apraxia of Speec (CAS) h, Autism Diagnosis, Referral to SLP at UNC for CAS diagnosis (she feels every strongly this is his main issue), she requested 1 hr extra of SLP/week by a person trained in CAS outside of school. Another Eval w/ Ped Derm at UNC for His Ash Leaf Spots and a new bump that formed on his face. And request for ABA therapy 4 hrs a week. Just got approved by insurance working on all that now. (flipping' referrals).
March: met with Pedi Endocrinology. Growth measured as a 4 year old when he was 2 years 10 months (follow up in 1 year). ****. Here is the NEAT part - Dr. and her resident had attended a genetics conference the week before at the National Institute of Health (NIH) about a new finding on gene 15. They have found polymorphisms (hiccup) (blip) that They have Found children also have DD/LD/Autism type characteristics and Adrenal Issues. Well, Wyatt has this blip on Gene 15 and the resident was really excited because the co free ce was the week before. Genetisist did t bring it up because the Info was released 3 weeks ago.

Lots of paperwork and requesting referrals, plus me and my OB and MFM appointments and therapy. DH was gone for 45 to TX for work and I'm just tired and busy.

Wyatt is now babbling maybe 20% of the day. Still doing great with Sign Language. Developmental Pedi does want him to learn ACC on top of Sign language. He currently gets 1 hr ST. 1.5 PT. 1 hr of OT. Adding on 4 hours ABA and 1 extra hour of ST. And we applied for respite care. Which maybe 20 hours a month.

I have to decide by summer if I want him to stay at his private school in a contracted public school slot or change to the Public Primary School's Spec Ed PreK classroom. I love his private school therapist but the classroom is more daycare than special education. The Primary School will have a Special Ed teacher with visual schedules and a classroom special Ed setting. But the therapists aren't as good.

[Gwenn]

Wow, that's a lot of information! Interesting about the findings on Gene 15.

The recommendation for CAS is a LOT of practice. Therapy 3, 4, even 5 times per week (shorter sessions are fine). It's hard to fit in with a preschool schedule but the research backs that up. So just know that when you are advocating for him.

I'm a huge believer in AAC. Definitely agree about that. I think for kids who are spectrumy it's often more effective than signing, although that isn't always true.

Good luck making the choice between schools. That sounds like a toughie.

[Robin0472]

update!! I've been soooo flipping busy. Baby is due in 3 weeks.

Recent changes: Epson Salts Baths 3x a week, Started him on Floraboost Probiotic (started 1/4 scoop 1x a day now to 1/2 a scoop 2x a day), Changed him to Nordic Naturals Cod Liver Oil (dosage based on age), ABA therapy started 2 weeks ago. Getting ABA therapy 6 hours a week!

HOLY COW THE CHANGES HAVE BEEN FREAKY!!!!! FREAKY SCARY AWESOME!!!!
With the Baths he started physically copying what he was seeing on TV, You Tube, iPad, iPhone, Fav. Movies, ETC.
After one week on the probiotic, Cod liver oil (Had been having the baths for 1 month).
One and a half weeks after the probiotics and Cod Liver Oil he started ABA Therapy, (Focused on Speech Production). His speech has BOOMED!!! Something is clicking and it is clicking fast! FREAKY FAST! Less than one week of ABA therapy.. Sunday, April 15th, Wyatt said "BYE" for the first time Prompted to his Sunday School Nursery staff. Normally he just waves. Monday, April 16, Morning: He had word approximations counting 1-10 with a video (NEVER HAD HE TRIED THIS BEFORE). He said "Bye" to his teachers after being prompted by me. Tuesday, he wouldn't nap, on cot going BYE, Bye, Bye, Bye and Uhhhh, Ohhh.. Trying to copy what people were saying. Wednesday - Babbled most of the day, sounded like copying what people were saying. Thursday - Talked to the OT - She said she was shocked by his improvement and would no longer consider him non-verbal, he is now pre-verbal. Met with school director on Friday, Suggested a meeting with IEP team to discuss Summer school/therapies and possible changes to his IEP. Plus his DX with ASD-PDD-NOS, Severe Expressive Delay, And need to check him out early for school 2x a week for ABA therapy.

Last night - Being prompted said "Mom, I, Love (blah), You, Dad (Da), I, Love (Luaa), You (Blu). Monday (Today) Spontaneously said "Bye, Bye, Bye" on the way out of the classroom. After a girl at the front desk said "Bye Wyatt", He said "bye" without being prompted to say it!

He isn't napping, but babbling on his cot during nap time. And still trying to copy things verbally what he sees/hears on videos.
Something is clicking and it is happening FAST!!! I'm so excited, Sorry if that makes little sense. BUT SOOO EXCITING for us right now!
It took my son 3 years and 2 months to say "bye" for the first time ever!!

[Gwenn]

SUCH an awesome update. Glad to hear it.

[Robin0472]

Today at nap time, he said "light on" three times!!!

[Gwenn]

So awesome.

[Robin0472]

I know I am hardly ever on here anymore. Megan Elizabeth was born May 23rd, 8lbs 3 oz. Wyatt has been an amazing big brother. He signs baby and then say "ba-be", and will sign want and say "oll" for hold. ABA therapy has proven to be awesome!!! No offense to gwenn but ABA has shown the most and fastest improvement. I cant even tell yu how many sounds, sentences he knows. He is showing the autistic chaining of words. Some words or sentences he is adding a "haa haa haa". because he is use to us laughing at him after he says something we understand. He has been at his school for one year now. I've seen improvements, but I think he would be better off at the public primary special ed classroom in the fall. But I go back and forth from putting him in there. He would be with the same teacher for two years before Kindergarten.
Right now he is getting ABA 4 days a week for 2.5 hours a day. Outside of school and we may be picking up Mondays.
He has started swimming again and we added a salt cell system to our pool. He started swimming this past weekend again. And Monday I was informed his eye contact has been amazing. On Monday he responded 10 out of 10 times with eye contact to his name being called. Last week it was 1-2 out of 10.
I'm still trying to learn as much as possible. My husband has really stepped up to the plate with the new baby. I'm so much more relaxed than I was with Wyatt.
We also now qualify for 23 hours of respite care a month. And we got his OT's daughter hired through our agency. She is home from college, going to be an OT and use to be a certified life guard. She went with us to the lake yesterday with all of Wyatt's quirky school friends. Thank the heavens I have her. There is no way Wyatt would be able to do all this with me being 4 weeks postpartum.
Our next goals are potty training and then trying different foods. His only meat he eats are chicken nuggets, fish sticks and tamales. I'm hoping to go back to real meats.
Eventually we will do the Great Plains Labs with the hair, stool, blood, urine testing. And eventually a DAN (Defeat Autism Now) Doctor. (They maybe called something else now).
I've gotten used to the Autism word. But the PDD-NOS definitely explains his behavior more than classical Autism. I love him and he is awesome.
He started his "NO" phase a few weeks ago and it is funny. In some ways I feel lucky i'm getting it 2 years late. I wouldn't trade him for anything.

And Moms.... please, if you are overwhelmed. Getting on some meds to help was the BEST decision I have ever done! Especially now that i have two. The stress levels are almost non-existent compared to what I went through after I had Wyatt. The ABA techniques that I am learning are making me become a better and more confident mother.
WARNING: There are not good ABA therapist so stick with your gut. I am blessed the supervisor and the two therapist under her, I LOVE, Wyatt LOVES!! They have a connection. And I have friends that have had a horrible experience (in Florida) and Mommy gut really kicked in. So ABA therapists may vary a TON. I'm learning every day.

We have just started a new Chinese Herbal tonic from my acupuncturist. Will let you know how that goes. ((HUGS)) to everyone who reads this. Bless you all. It is a long road. it has its ups and downs...but I have to take it day by day.

[April1975]

I am happy that everything is falling into place. I hope you don't mind if I ask a couple questions. My 3yo appears to be on the autism spectrum. Regarding the lab tests, what are they testing for? And how is a DAN doc different from a Dev Pedi?