Hello all!
My developmental pediatrician appt moved up to this coming Tueday(originally posted for Oct 31 for Carson, and Nov 14th for Cooper). I am SO nervous, and need some insight. What will I expect? Are there any specific questions I should ask besides the obvious (is he on the spectrum?, what form of therapies does he recommend?, what is our next step?, etc).

I have been watching both of my boys closely for almost a year now--they will be 2 in late Nov and have shown signs for quite some time(eye contact was minimal, but has gotten ALOT better, self stimming patterns/arm flapping when excited, no joint attention, no words, etc). My stomach is in knots-and as all of you can relate, I am just petrified. There are so many different directions to go, and not knowing what will work for my children, not to mention what insurance will cover-I am just so nervous about the entire process (did I mention that I was nervous? LOL).

They have been receiving Behavioral, Developmental, OT, and Speech thru our local ECI. I am looking into some sensory integration therapy--and would honestly love to put them into ABA therapy, but my insurance company does not show coverage of it. I have been reluctant to pursue anything just yet--#1 because I pray that we will just have a delay diagnosis (but my gut says otherwise), and #2 I have been told that once you mention the word autism to the insurance company, you are red flagged! So, with all of this in respect, I have a few questions for you experienced mummies.
#1 What sorts of questions beyond the typical should I ask the pediatrician while I am there? Anything you wished you would have asked had you had more information?
#2 How do I navigate my insurance company (self-funded Aetna POS)?
#3 Do I want a diagnosis at age 2? Will this hinder us in any way? Can labels change--or will this label follow my boys for the rest of their lives?
#4 How do you deal as a parent-I know that must be a popular question, but I don't even had a diagnosis yet and I am just at a loss sometimes.
#5 What direction did you take with your child/children in the form of therapy? Which works best for u?
#6 I have checked out local ABA therapies, and I am looking at $8000 a month for 2 kids at 20-25 hours per week--I obviously cannot afford that. Any insight--any loopholes?
Thank you so much for the advice in advance. I know many of you probably answer these same questions over and over, but please know that we who are asking them feel truly blessed to have a place of refuge. Thank you....
Amber
BBG 22 months

Hi Amber. I am sorry you are having to go through all this. The beginning of this whole process is so draining!! I will try to answer what I can. I have a dd who is on the spectrum (and another with no official dx, but probably is too) and we did have her diagnosed at 2 1/2 years old......although I knew right at age 2 when she stopped talking, it just took time to get someone to listen. We have only been dealing with all this for about 1 1/2 years, but so far I am very glad I had her dx. so young. The main reason is we were able to get help with funding. We have been able to get them in lots of therapy and early intervention and they have come so far. We could not have afforded ABA out of pocket, no way. One of the girls is on the MR waiver in our state and has Medicaid as a back up insurance. So once our regular insurance ran out for therapies the medicaid took over and has covered it. We started with ABA everyday M-F with 2, 3 hour sessions a day. We now do preschool in the am and an ABA session for 3 hours a day.
ABA has been so awesome, I am totally amazed at the changes we have seen in just a year.

Email me anytime!! katengarry@yahoo.com

Katie

"

Hi Amber
I may not be much help here but I did want to reply and mention something I know another Mom is doing. I know her is son is diagnosed with autism and she uses this to her advantage in the school system to get him the therapy he needs. The private therapy she uses does not use the autism diagnosis when filing insurance. Her sensory based speech therapist works with her because of her financial situation. I know this sounds like she is abusing the system but technically her son suffers from other issues that were caused by oxygen depravation as a result of poor nursing care at birth. Maybe you can explain your financial situation to your therapists and see if they will work with you, maybe dev. delay diagnosis would be a better way to get things paid for with private therapy.
I have had good luck with the dietary changes and supplements so far. I also had my kids IgG allergy tested recently and removed allergens from their diets. This has helped a lot.
As far as dealing with things as a parent, I guess for me, it has been reading everything I can get my hands on regarding autism, allergies, etc.
I am reading Healing the New Childhood Epidemics by Bock right now.
My kids have come a long way and I am willing to bet yours will too with time. Most people would not guess that I have a child on the spectrum these days. She is thriving on the GFCF diet and keeping up just fine with her peers in Pre-K. She could use a little articulation work with her speech but she is already so much better since April of this past year.
HTH and best of luck with your appt. Keep us posted.
Tracey
GGG 2/04