I have been a long-time member (but can't sign into my original account MM379). I don't get to post too often, but do keep up on all the posts. I have really enjoyed this forum and all the great advice.
My 4 yo DS just got diagnosed on the autism spectrum - high functioning PDD-NOS. We aren't shocked, but also thought it might be more of a sensory integration issue as he does have a reasonable amount of social skills (has friends, can play interactively, shows empathy) although admittedly, those aren't consistent all the time and seem a little less developed than his same-age peers. He does have a fair amount of sensory processing issues and some expressive language difficulty, so we have begun speech and OT at a reputable specialty agency in our area. We went through one round of evaluations (minimal) with our public school system when our concerns started as DS was too old for EI (hit all his milestones before age 3, no major concerns before 3 except for poor sleep and hyperactivity, but now in hindsight, I do see a few more subtle ones). The public school didn't evaluatate on all fronts (only speech/cognitive, no psych or OT) and my pedi redirected us to other specialists. It has been a long process but now that we have a dx we are regrouping with our public schools.
My concerns are many. My self-funded employer insurance does not cover autism treatment like speech, aba therapy, etc. Right now, we are paying out of pocket for speech and somehow managed to get OT covered b/c of some of the physical aspects. He is in full-time private pre-school (childcare center based) that we love, he does have some friends, and his teachers have been willing to be creative and try anything the OTs suggest in terms of his sensory needs, which we have already seen slight progress around in terms of his concentration, hyperactivity, etc. He will be pre-school age for another year. My dilemma is we are in a small town that only has a part-time preschool program to deliver special ed to this age group. And, our IEP meeting is in two weeks, they may order more evaluations, and the summer does not "count" toward timeframe allowances they have for response. So, he may not be involved in services with them until the fall (?). Not sure yet. I am very torn. I don't want to pull him out of his pre-school completely b/c it has been a source of consistency and friendship, but I also feel like people think we are crazy to question "free pre-school" with the therapies included, when they don't understand it would be a major transition for him PLUS it is not full-day, so he would then have to be shipped off to a sitter or another childcare center midday. DH and I have pretty hectic full-time careers. I know his dx would likely qualify him for transportation, but i don't know if that could be to his current pre-school (different town) and frankly the idea of someone driving him who is a stranger (as a little guy at 4) makes me ill. Obviously we still have a lot to figure out and need to examine our own lifestyles, jobs, and what would be the best for DS. We aren't opposed to privately paying for some services for this next year either in lieu of or in conjunction with the public school services, and then when he is kindergarten ready definitely going full swing with the public school services. We even spoke with a great ABA therapist who is willing to go to our current preschool (and they are willing to allow her in). But again, this would be private pay. Also, my understanding is thatt while there are many awesome OTs in the public school system, not all have sensory processing disorder certification, so we may want to supplement his therapies at the speciality agency regardless for quite some time. I am currently appealing the insurance coverage through my employer. DH's open enrollment passed recently, but before we knew all this, and his is self-funded as well... not sure about the coverage but can look into it. Switching employers, one of us taking a step back, moving, have all been on the table... just need to not make any rash decisions until we know a little more. It is hard though - his diagnosis has been called "fluid" with a good prognosis if interventions are started early at this ripe developmental age, so we certainly feel an anxiety to get more of the ball rolling here.
Just wanted to put all this out there and see if there are any similar situations in the forum community and if anyone has any insight to share. I have done my google duty and I have been feverishly combing the various ASD support websites, but did want to put this out for feedback, advice, guidance, on this forum since it has been so helpful in the past.