Our son is three, and we have no idea what is “wrong with him.” We have been excused from school and occupational therapy this past year—with an invitation to return once we “figure it out.” We have spent nights in the hospital having not one, but two, EEGs and an MRI. We have had a cancer review, psychological review, been in speech therapy for a year, read endless books about what “it” could be, have had an average of four hours sleep each night, and are still in the same place we were 365 days ago.
You see, our boy is sweet and kind and gentle. He loves music and eats an organic, vegetarian diet with the hunger of a teenager. He likes to play and swing and build—just like most other boys his age. The problem? He is overwhelmed easily. He doesn’t do well with others. He’s got a bad habit of not exactly being gentle to unfamilular adults or children (which makes play dates and group activities nearly impossible). He basically has no friends. He has something called sensory processing disorder. Marry that with his speech delay, and you have one frustrated toddler—and two parents navigating blindly in the wilds of (possible) autism.
After all we have looked into, researched, and showed up for, this is all we have accomplished finding out in an entire year. I am not coming from a place of expert parenting while I write this. I am a mom navigating the very muddy autism (or not) waters in Nashville. It’s been suggested enough times that we can’t ignore the possibility it may be true. We may have an autistic child, and we have no idea what that even means. I deflected this idea for so long. After all, our boy is so affectionate and loves a good snuggle. I held on to that as“proof,” it may have delayed us actually taking on this path as a real possibility.
Today, I am going to share with you what we have done over the course of our discovery process—the cost, the resources we have found, and what’s been beneficial (and not so beneficial) along the way. I want to give you the very best information in an organized and actionable way. Each child with autism has a very different path to take, and there certainly is no “catch-all” plan that fits every family.
We have researched a place in New York—the McCarton Center—which is often referred to as the Gold Standard for autism testing. We have been on a wait list at Vanderbilt for a few months that could take up to a year, and they are unable to tell you exactly where in line you may fall. Frankly, we can’t wait a year. The test is a standard Autism Assessment Test—very thorough—and will take one to two days. It costs $4,350 and does not accept insurance. If you want to stay local, we also researched The Brown Center for Autism here in Nashville. They do a similar test for around $1,000 and have a follow up ABA program. They have a reimbursement program set up for some insurance. Psyche is another local place we found that is also around $1,000 for the test and offers no follow up care, but can perform the Autism Assessment Test. Both Nashville facilities seemed to have opening in the near future.
We struggled with knowing what our next step was once we came to the conclusion something was “wrong,” and we didn’t have the know-how to manage our child in a successful direction. We thought speech therapy and occupational therapy was enough, and he would grow out of it. Then we followed the advice of our pediatrician, and signed up for The Regional Intervention Program—with some hesitation. Our son has never done well in a group environment, and this is exactly that. Parents (or caretakers) go with their child to a two hour group session twice a week to exercise positive strategies for parenting while children learn coping skills and self management techniques. We have heard nothing but amazing things about this program—and it’s free. You “pay it forward” by helping the next round of parent once you have completed the course. We also begin this program soon, and I am very excited to report back.
I am sure anyone interested in this story would benefit from anyone else out there who has taken steps successfully here in Nashville, has advice or resources, or can encourage a next step for someone who’s lost on this journey. Let’s continue the conversations in the comments—until next time.