Update on Evan's Progress and Condition: A Specialist's Evaluation

[KellyTheChef]

I just wanted to update everyone on Evan's (DS, almost 3 yrs) progress and condition.

I took him into Akron Children's Hospital yesterday for an appointment with a Childrens Neurological Developmental Specialist. The Dr. was with us for about 45 minutes and asked lots of questions (about some things in Evan's behavior that I didn't even think were related to Autism!) and watched Evan playing and interacting with me during the appointment.

His evalutation at the end of the appointment: right now he is calling it Apraxia (which is a speech disorder where Evan WANTS to communicate, has a lot of comprehension and intellegence, but it's almost like the program that can tell his mouth muscles etc. to move and make the needed sounds to SAY what he want isn't there. This will come as it is "built up" through speech theapy and integrated preschool where he will be involved with other kids who are performing where they should be vocally.) He is also saying that Evan has Autistic traits. A lot of what Evan does fits with the Autism, but some things are NOT what an autistic child would do. He is a mixed bag!!

We have our next appointment at the end of May. He feels that what we are doing now (speech thearapy, and working with him at home, looking into an integrated preschool) are all of the things he would have us do right now. I feel good now, knowing that a specialist thinks we are on the right track.

I just wanted to give everyone an update so you know where we are at with that specific situation!


Kelly

 

[JAE]

I'm glad you were able to get some more good information.

 

[dianevill]

Thank you for keeping us updated. I'm glad you're on the right track! I'll continue to keep your family in my prayers.

 

[mpkegley]

Kelly, I am kind of dealing with what you are. My son's pediatrician is sending him to an Occupational Therapist. At his last appt, she didn't say that she thought he was autistic, but all of the questions that she asked me points to that direction. He is not showing normal "behavior" for a 3 yr old and he has some texture issues. He "freaks" out in certain environments and when he hears certain sounds. She even told me that the preschool that I have him signed up to go to in the fall is probably not the best place for him to go. I am not sure what to do at this point. I guess I need to see what the Occupational Therapist says about him next week and go from there.

I will keep you in my prayers that everything goes well with Evan.

 

[yummybytes]

Kelly -- Lots of prayers for you and Evan!! I'm glad that you're on the right path!

 

[daniellemorgan]

Have you every thought about bringing him to a DAN doctor?? I have a friend who has an autistic son and she said after all the specialists that was the one person who really helped her. Also, in Jenny McCarthy's book "Louder Than Words," she also speaks highly about the DAN doctor.

 

[KellyTheChef]

Mary~

I would ask why she thinks that preschool isn't for him. Evan may be showing fewer autistic signs, but they really thought he would do BETTER around other kids his age that are fully functional. I would check into that further. I certainly hope you are able to get more info on your little guy. Are you able to take him to a neurological specialist to get further evaluation?

 

[KellyTheChef]

Have you every thought about bringing him to a DAN doctor?? I have a friend who has an autistic son and she said after all the specialists that was the one person who really helped her. Also, in Jenny McCarthy's book "Louder Than Words," she also speaks highly about the DAN doctor.

I will look into that. There is a Mom at my church that is supposed to be letting me borrow Jenny McCarthy's book!

 

[riggs62]

Hi Kelly,
My son is turning 2 this month and has tested into the Autism spectrum under what they call PPD-NOS (Pervasive Developmental Disorder - Not otherwise specified) How's that for vague, eh?
He sounds a lot like your DS, his tests very well for his physical gross and fine motor development, no seizures, no stims, but his speech is just not there.
He says Momma, Dadda, appropriately and uses a few signs for different things. I can see him trying to hard to say words and he gets so frustrated. When we read his "Puppies" book he says "Puh, puh, puh" like he just can't get it out.
I'm glad you'll be reading Jenny McCarthy's book. Every mother I know read it in one sitting, including me.
We have eliminated dairy and put him on soy milk. I have seen improvement with this. I just can't do the gluten free yet. We are in a special playgroup once a week where he was tested. They help us, help him, during play. Showing us what to do and how to encourage pretend play with him. He is also starting in-home speech therapy next week (once a week to start).
This is a learning experience for us all. Hang in there, keep things in perspective, and we'll be praying for your family.
Email me anytime if you need to talk. [hugs}
Michelle

 

[pamperedlinda]

Kelly, I had no idea! You and your family are definately in my prayers.

 

[KellyTheChef]

Michelle and Mary~ Your sons sound similar to Evan! We need to catch each other on the phone sometime!! PM me your number and a good time to reach you!! (I am EST time...)

 

[janetupnorth]

Kelly - I am sorry to admit I forgot your son's appointment was coming up - time flew by!

So glad to hear you are on the "right track". I hope he continues to progress as he is in school, with you and other things.

I'm sure Evan will continue to do well!

 

[mommyhugz1978]

I am glad the appointment went well for you Kelly... I kind of went through the same thing with DD.....She is now in First grade... still behind her peers on things.. But is catching up rather quickly. She going to a speech therapy and such at school. Long story short......Be persistent with the schools and Evan's learning. I had to be in order to find out that my DD has a learning disability that I knew she had but the was dismissed. That is just one of her many problems... I will keep you guys in my prayers as well.....

 

[Gina M]

Kelly,

Good luck with everything with your son! I have a nephew, Luke, who's 6 1/2 - he's autistic and also has oral apraxia - he has been doing speech therapy and occupation therapy since he was very young and is currently in all day kindergarten with an aide in the morning and another in the afternoon. He just recently (within the last few months) started talking - let me say it's music to our ears! He can finally say our names and tell us that he loves us - he does continue to have daily struggles but he has improved so much over the years. It's hard on my sister and her family (and us too) but we see him only getting better and better with time. And he does great in school - the kids all like him and want to sit with him at lunch - he's quite a little sweetheart. You're definitely doing the right things - getting him help at an early age definitely is an advantage - I wish you and your family all the best

 

[mpkegley]

Mary~

I would ask why she thinks that preschool isn't for him. Evan may be showing fewer autistic signs, but they really thought he would do BETTER around other kids his age that are fully functional. I would check into that further. I certainly hope you are able to get more info on your little guy. Are you able to take him to a neurological specialist to get further evaluation?

The preschool that we were planning on sending him to is a private one and does not have Occupational/speech therapies offered. She wants him to go to a public school where he can get the therapy that she thinks that he needs. She has not suggested taking him to a neurological specialist yet. She has set us up to see an occupational therapist. We have an appt for next week, although they called yesterday and wanted to try to reschedule, so not sure when we will be going. I am hoping they call today and we keep the appt. My little one talks great - I would never think that he would be autistic in any way, but I have been checking and I guess there is a broad spectrum of the disease. We have a really hard time taking him some places, because we don't know what is going to trigger the "breakdown."

 

[stacywhitlow]

At least you caught these signs early. When my son was that age everyone was diagnosed with ADHD including him. After 9 years of different medications, interventions, etc. we went to see a DAN doctor. I have a cousin with Asperger's & noticed that Miken had a lot of the same traits throughout the years. He is now on a gluten free/casein free diet with limited soy. What a huge difference! His dr. is still not sure about the Asperger's diagnosis yet but says he definitely is "autictic like". We are still working on things. I just pulled him out of the public school (they were NO help) and started homeschooling. He is also dyslexic & severely asthmatic. So you can see my struggles for quite some time. He is now 13 & I am finally seeing the boy that I had for a few years. It has taken me over 9 years but at least we are making progress.

Sorry so long, just wanted to let you know not to give up even if it takes years. It will be worth it in the end. May God bless you & your family during this and keep you headed in the right direction for your son.

 

[krzymomof4]

Kelly,
I will definately be praying for Evan and your family.
Leslie

 

[ivykeep]

My daughter isn't on the autism spectrum, but she does have speech apraxia... she understands and responds to everything, but has limited speech (only about 75 words and very few combination -- she just added "back 'ome" for wanting to either go back home or wanting her dad to come back home.) She will create elaborate gestures to indicate what she wants and uses her limited vocabulary rather effectively.We are in the infants and toddlers program through the school system (she's almost 35 months old) and will have a transition meeting before Dec. 24th to discuss the plan to transition her out of the I&T program and into special ed for next school year.I've just completed an 8 week training program through I&T on the Hanen (hanen.org) on effective communication techniques with her... it is a program that is very well suited for autistic children as well, so you may want to check it out.While I took the class she was out of service (in a structured playgroup, but not receiving specific speech services). We pick those up again after Thanksgiving. Our therapist did tell me that she will probably need therapy multiple times a week after she turns three... which should be an interesting scheduling challenge since her birthday is at the end of March and I'm now pregnant with twins with an official due date in May (which means I'll be full term for twins the first week in April).

 

[DandyG03]

Kelly, Michelle & Mary my heart and prayers go out to you all, I've been in your shoes before. My son Danny has PDD-NOS and was dx at the age of 4. In April of 2009 he will go post intensive(drops down to less then 10 hours a week from 30-35hours a week) from his waiver slot for in home aba therapy. The best best advice I can give you girls is be the best advocate possible, be the squeaky wheel more often then not, you may have to fight the school systems(depending on your school/district), take advantage of all government support for your child - thats what it is there for, don't loose hope and always always know there are other moms out here like me who will help you hunt down any info anytime because I've been where you are and there is no cliff notes/blue print on what the next step should be etc. So if any of you girls need any help tracking down info please email me and I would be so glad to help, [email protected]. Also remember to believe your all amazing moms, this is something I need to keep reminding myself too because some days I feel like autism has gotten the best of me and my son.

I don't mean to sound pushy and all btdt but like I said you are the best and only advocate for your child, you won't regret being the squeaky wheel if it helps your child to progress and reach goals. My sons in home therapy has paid off he has gone from 98% nonverbal to 92%(some with prompting and some without, he is getting better at it everyday!!). I know it may not look like a lot but it is, he works SO hard for those words. These kids are amazing.
My son stims a lot and likes to shake clutch toys(remote controls to our tv, phone, dvd remotes etc) he also color matches toys in groups of his favorite colors. It's gotten bad lately so we are doing a program to fade this behavior.

Like I said if any of you ever have any questions or need some help of where or what to do next just email me and I'd be more then glad to help.

 

[wcranford]

WOW, so many stories so similar! I have experienced so many of the same things with my son who is now 8.

My Husband was diagnosed with Celiac disease and it is a hereditary disease. He had to go on a gluten-free diet. Through research, I found out what this disease does and how likely my son has it as well. The only true test is a biopsy of the small intestine. We put him on the gluten free diet with my husband to see what happened. He has made remarkable improvement. He is speaking with almost no stuttering and there is no longer times where he seems stuck. He has started gaining weight and has learned to read on a 1st grade level! All just since June. At the end of the school year last year, he could not read a word. Now he reads over 200 words and adds 5 words to his vocabulary every day.

I had to research and understand what gluten does to a celiac and how important nutrician is in those early years. Knowing his body was being robbed of nutrients because of gluten/wheat makes everything make since now. Watch this video part 1 . YouTube - Mystery Diagnosis- Celiac disease 1 of 2 . You should be able to find Part 2 easily.

Not all symptoms are the same but this is what pushed me to try gluten free for my son. There are great gluten free breads and cakes you can buy pre-mixed at your local grocery. They work well in the stones too!


P.S. If you have any Gluten Free recipes, please pass them my way! Thanks

Wendy Cranford
Pampered Chef Consultant

 

[BettieC]

Hi,
I have a son who is 3 1/2. He was dx'ed shortly after his third birthday with ASD.

Anyone wanting to chat pm me

 

[etteluap70PC]

My George (3 1/2) was diagnosed recently with Apraxia as well. Check out this site. It has some good info.

Apraxia-KIDS (a program of The Childhood Apraxia of Speech Association) - Apraxia-KIDS

It is so frustrating to know your child is trying to comunicate but just cannot piece it together. I feel you pain and HOPE!