Can I join you?

Hi everyone,

I mostly hangout on the parenting / FHF / and now pregnancy boards. But I find I lurk more over here. I can use all the advice / support I can get. Here is DS's story.

I started really noticing some thing weren't right at around 16 months. He still was not speaking at all, he didn't play with his toys correctly, basically threw them or hit them together etc. He had a fixation with slamming any open doors he saw and he would get over excited with the ceiling fans, and wheels on his cars. Of course thanks to google, I start reading and think my child is Autistic.
I called EI. They said that they would evaluate at 18 months (but since he was 5 weeks premature they came at 20 months.)
He qualified for speech 2x a week, OT 2x a week and a SE teacher 2x week. They started early December.
It's just about been 3 months. While I started seeing some improvement it now seems to me we are going backwards. He does now make a lot more sounds like he is trying to talk. He even started playing with toys correctly when shown hand over hand. He does have sensory issues that the OT is working on. But this last week or so he is back to throwing his stuff, spinning wheels, etc. And I personally do not think he understands. I don't believe he understands the word no. Is this possible?
The speech therapist suggested last week that we have a psychological exam done on him cause although he is showing some progress it is not as much as they would like. I brought it up to the OT as well and she don't think it would be a bad idea. She says then at least we will have a diagnosis. So I am going to call my coordinator tomorrow and request having him tested.

This has really taken a toll on me. I work full time (2 days from home) and I am 6 months pregnant. I am trying to do the best I can with DS but I just see him so much behind other kids his age. He will be 2 next month. This gets me so upset. I guess I am just looking for advice / support on what to do from here. Also can anyone recommend any books I can read to help me more understand developmental issues, sensory issues, etc.

If you got to the end of this thank you and sorry it is long.

Re: Can I join you?

Feel free to FM me anytime

My dd is in EI right now as well. The best progress has come from a lot of structure/therapy. We currently have our entire mornings booked with therapy. I would most definitely push for ABA and for OT, get a sensory gym included. Make sure the OT has a great sensory base. ABA if nothing else will help your son attend and be less self directed. If you get ABA, you will get a team leader and team meetings. It will help if all the therapists were on the same page.

Out of Sync Child
Out of Sync Child Has Fun
Raising a Sensory Smart Child
Sensational Kids
Any book by Dr. Stanley Greenspan
And the dvd -Autistic Like-Graham's Story

Re: Can I join you?

welcome


AJ aged out of EI in August, but he began this journey at 15 months old and similiar to you they wanted to wait for the psych to be done, at 18 months old he was formally diagnosed.

i was 2 months pregnant with DD when his official diagnosis was given... i will be honest it was rough, but i thought about the services he was recieving through EI and it did help. he showed such great improvement.

i never thought he would come so far in such a short amount of time. he is 3.5 years old now.

FM me if you ever just want to ask specific questions.

as for books, let me take a look at which ones i have and will tell you which ones are worth reading.

Andrea

Re: Can I join you?

This morning the teacher said she will call the EI coordinator today and recommend the clinical testing. She says that she is not convinced that he is full blown autistic, because he does show good progress with certain tasks. She said if she were to have to say right now she would think maybe PDD? I am going to have to start researching!
She also said something about maybe Auditory Processing Disorder?? I am so lost.
Thanks for the book rec's. I am going to go to Barnes & Noble later to check some out!

Re: Can I join you?

Hi - Welcome! You're story is exactly the same as ours - down to the pregnancy, sensory issues and auditory processing. It's hard for me to get much computer time, but Id be happy to give you my phone number so we can chat anytime. Cole is a 6 year old success story!

Re: Can I join you?

I would definitely get the psych exam. Once you have that, hopefully you can rule out certain things and if you do get a diagnosis, you will have access to more services than what he currently has. My DS was receiving services and it was his PT that recommended a psych exam. Some of the therapists are experienced with working with kids on the spectrum and pick up on things others might miss. Sometimes, before 3, it's hard to notice qualities of a child on the spectrum, but some of our therapists were really good at noting things that were not typical behavior.

It's a little overwhelming at first, but keep asking questions - on here and IRL, and that will help a lot, IMO.

Message edited 2/18/2011 1:29:35 PM.

Re: Can I join you?

Your story sounds a bit like mine.
My DS was a late crawler, a late walker, a late talker, HATED play dough and all sensory related things.
I called EI around 18 months and it was the best call I could have made.

We had in home services every day. His therapists didn't think he had autism.
They weren't sure though. DS threw them all for a loop.
He also did the spinning wheels, loved ceiling fans, etc.

I started him in an EI group in a local school 3x a week, 90 mins a day, when he was 27 months old. Best thing I could have done! Now, not only did he have home services through his school/agency, but, he was getting the social experience as well.

It wasn't until his Pre-K eval at school that he was diagnosed with PDD-NOS (by the school psychologist)... (Yep, I was pregnant as well)..
We stuck with this school/agency and he has come a LONG way! He now goes there for pre-k (he just turned 4) and will be there through next summer (thank you january birthday) when he starts Kindergarten in 2012. He gets ALL his services at school (PT, OT, Speech) and its great because they have the sensory gyms and all.

If you have any questions at all, please don't hesitate to FM!

Message edited 2/18/2011 10:27:12 PM.

Re: Can I join you?

What about having him evaluated by a developmental pediatrician?

Re: Can I join you?

Welcome!

Re: Can I join you?

Hey there!
I'm fairly new to this board also. DS is 2.5 and only started getting services in Jaunuary. We got our diagnosis very quickly and have started ABA therapy for him also.

Lots of luck!! I know there are probably alot of moms reaching out to you right now through FM and on here. I'd suggest clicking "Like" on the Autism Speaks Facebook page also - they have many helpful articles and resources that I've found to be pretty wonderful in our beginning stages of this journey

Re: Can I join you?

Welcome! I am an ABA therapist, feel free to fm me with any questions

Re: Can I join you?

Thank you everyone for all your reply's & advice. I will definately be contacting you with more questions. This is a crazy week for us cause we have a death in the family but again I appreciate your advice etc.