Son w/ Delayed Speech...possibly Autistic.

[blessed.mommy]

I just thought I'd stop by and introduce myself.

I'm Maria...the SAHM to Jack (2) and Ben (almost 10 months). Jack has delayed speech and other "signs" of Autism. He was evaluated by a developmental specialist at the end of August. The specialist said that he has the verbal skills of a 10 month old (which seems to be improving, little by little). They wanted us to have the ADOS testing done. We havent had it done yet, because we wanted a 2nd opinion. After our pediatrician (specialist in Autism) looked at the report and interacted with Jack, she said we should have the ADOS done or have her evaluate him.

Has anyone else had the ADOS done?
For those of you who live in VA...did insurance pay for the it?

[Linda on the move]

What does ADOS stand for?

[blessed.mommy]

Originally Posted by Linda on the move

What does ADOS stand for?

Autism Diagnostic Observation Schedule

[sbgrace]

I think (I'm nearly positive but I lost the records) they did an ADOS on my son in the evaluation process. I don't remember the specifics. He received a PDD-NOS (autism spectrum) diagnosis at 2.5. We got a second opinion because the grandparents were skeptical and she agreed.

Are you doing ok? I think this point (is he/he might be/etc.) is very difficult for most people in the process and it was the hardest point here.

[blessed.mommy]

Originally Posted by sbgrace

Are you doing ok? I think this point (is he/he might be/etc.) is very difficult for most people in the process and it was the hardest point here.

I think I'm driving myself crazy! I go up and down from thinking "It'll be ok, it'll be ok..." to "Why us? Why HIM?" I'm trying to think positively and to just get whatever needs to be done, DONE. So we can move on to the next step...Autism or no Autism. I think DH may be in a bit of denial about the whole thing. We are kicking ourselves in the butts right now, because we had the ADOS scheduled and they ended up moving it up on us, before we could get the 2nd opinion...so it was cancelled. Now they're telling us that EI won't pay for whatever insurance doesn't cover and we've got an evaluation for services (Speech therapy, OT ect) through the public school (along with preschool) and they're saying that when he gets into that program, he'll no longer be eligible for EI stuffs. The confusing part is...when we were at at the meeting with the public school people, they told us that they work with EI services.

We are hoping that not only will be able to schedule the ADOS soon, but get everything paid for. I have to call our insurance on Monday (hopefully anyway, if I can find someone to give me this "code" I need to see if ins. covers the ADOS), so they can tell me if it's covered or not. It should be, because VA sta†e law states that insurance companies in VA have to cover anything "mental health" including Autism screenings/treatments.

Thanks for the reply/support SBGrace, I appreciate it. It's all a bit overwhelming.

[kme]

I live in VA and my son had the ADOS done as part of his testing through the school. It was done by the school psychologist when he was being evaluated for services. The ADOS would be done as part of an evaluation - I'm not sure it would be coded separately. It was not done in isolation but rather was one piece of the total eval.

[Linda on the move]

Originally Posted by blessed.mommy

I have to call our insurance on Monday (hopefully anyway, if I can find someone to give me this "code" I need to see if ins. covers the ADOS), so they can tell me if it's covered or not.

Get the name and ext. # of the person you speak to.

Our out of pocket for my DD's full neuro-psych eval last year was only $50, which I thought was great. But talk to your insurance company and jump through any hoops they have.

I'm trying to think positively and to just get whatever needs to be done, DONE. So we can move on to the next step...Autism or no Autism.

It may not be that clear cut. Autism is a spectrum, and with some kids it isn't clear what is exactly go on with them, or exactly what it means for their future.

I think that part of having a special needs child is making peace with the unknown.

I think DH may be in a bit of denial about the whole thing.

That's normal. My DD is 14 years old and it amazes me how much denial my DH is capable of!

Is your son currently in EI?

[Kristine233]

The ADOS wasn't bad, it took about 2 hours and was mostly the child Psychiatrist (who specialized in Autism) observing and playing with him and questioning us. We also had sent all his past medical evals and history ahead of time for her to review as well. Our insurance did cover it all too.

[beachcomber]

Hugs to you, Mama. Your last post really resonated with me. This is basically the process we went through this year from Jan-Aug getting our DD dx'd with ASD. All the appts, meetings, observations, evaluations, assessments, over and over by agency after agency and all the while reading up on this symptom and that sensitivity or delay trying to figure out what on earth was going on with her. When we finally got the diagnosis, I was relieved. Right up until the psychologist said the word "disability" and then my stomach fell out.

It's hard not knowing. Then it's hard knowing. All I can tell you is that knowing and getting a label means some supports come your way. Money, services, specialists and the knowledge that now - finally - you have a direction. But it is still hard some days.

[blessed.mommy]

Originally Posted by Linda on the move

Is your son currently in EI?

Yes. He's been in EI since June.

[Emmeline II]

Former NFL quarterback Rodney Peete wrote a book called 'Not My Boy!: A Father, a Son, and One Family's Journey with Autism' that may be helpful with your dh; I'd look at it first.

Ds is 6yo and had a horrid year in K pre-diagnosis (ADHD, possible Asperger's). This year he is on medication and therapy, and yesterday we had a parent teacher conference where we talked as much about our cell phones as ds, because ds is doing so well!

[blessed.mommy]

Originally Posted by Emmeline II

Former NFL quarterback Rodney Peete wrote a book called 'Not My Boy!: A Father, a Son, and One Family's Journey with Autism' that may be helpful with your dh; I'd look at it first.

Ds is 6yo and had a horrid year in K pre-diagnosis (ADHD, possible Asperger's). This year he is on medication and therapy, and yesterday we had a parent teacher conference where we talked as much about our cell phones as ds, because ds is doing so well!

Thanks for the recommendation! I'll look it up!
That's great about your DS! So happy for him! and go you for getting him all the help/support he needs.

[Fay]

We did the ADI-ADOS when DS1 was 3 years old. ADI-ADOS is widely considered the most thorough and accurate diagnostic protocol in the USA. The advantage is that it rules out other possible conditions, because it is so detailed and thorough. The disadvantages are that it is not necessarily covered by insurance, very expensive (about $3000 for the full testing) and time-consuming (we did 9 hours spread over 3 days, but the clinicians needed several weeks to go through the data and write everything up for us). If you get an autism diagnosis using ADOS, then your child is guaranteed services through the school district and possibly through your county's mental health center. My DS1 received about $100,000 worth of services from the school district in the first year after his formal medical diagnosis using the ADI-ADOS protocol...and he's now mainstreamed in a typical elementary school classroom...so I think the tests were worthwhile for my family.

If 2 physicians have already recommended ADOS tests for your child, then you probably already know what will happen. I know it's a shock -- I've been there. We are all here for you.

[blessed.mommy]

Originally Posted by Fay

If 2 physicians have already recommended ADOS tests for your child, then you probably already know what will happen. I know it's a shock -- I've been there. We are all here for you.

Yeah. I hear you. I don't know if I'm "in shock" at this point...he's not been tested yet. I think the shock will come when I hear those words come out of a physicians mouth, "Autistic..." I think this has been the most stressful year of my life. I am so tired, so worried, so stressed!

DS1 has been having these screaming fits after naps for the past several days. He's had them before (before DS2 was born in Dec 09) then they stopped...What's the deal? I can offer him food/drink/cuddles but he doesn't want it.
We went to the park today and I noticed how almost oblivious he was to other kids that were playing...is this normal for Autism kids?

[Linda on the move]

Originally Posted by blessed.mommy

I think this has been the most stressful year of my life. I am so tired, so worried, so stressed!

What's the deal? I can offer him food/drink/cuddles but he doesn't want it.

it's hard to say. My DD does great for a while, and then things are really horrid for a while, and then she is fine again.

We went to the park today and I noticed how almost oblivious he was to other kids that were playing...is this normal for Autism kids?

yes, but was he happy? What did he enjoy? Focus on the good parts while you go through this process, because there ARE good parts. Focus on what is amazing and wonderful about your sweet baby.

[blessed.mommy]

Originally Posted by Linda on the move

yes, but was he happy? What did he enjoy? Focus on the good parts while you go through this process, because there ARE good parts. Focus on what is amazing and wonderful about your sweet baby.

He was very happy, no whining, crying or any kind of complaining. He had fun swinging with his brother, going down the slide over and over and running away from me (I think he thought it was funny). He also did really well climbing this lil rock wall thing, he climbed up and attempted going over the other side to climb down.

Oh, I forgot to mention earlier...he's been saying, "No", and "What" recently! Yay for vocal progress!

[Linda on the move]

Originally Posted by blessed.mommy

He was very happy, no whining, crying or any kind of complaining. He had fun swinging with his brother, going down the slide over and over and running away from me (I think he thought it was funny). He also did really well climbing this lil rock wall thing, he climbed up and attempted going over the other side to climb down.

Oh, I forgot to mention earlier...he's been saying, "No", and "What" recently! Yay for vocal progress!

This is good stuff.

[blessed.mommy]

He has his evaluation for speech therapy/OT/Preschool today...I can't say I'm looking forward to it.

[Linda on the move]

My DD likes evaluations.

[blessed.mommy]

Originally Posted by Linda on the move

My DD likes evaluations.

Hee hee That's cute!

My DS seems to do really well in the beginning and then act out towards the end. I think it could be an issue with overstimulation or boredom.