Diagnosis Day… Now What?

Recently a mom contacted me the day her 3-year-old son was diagnosed with autism. She needed an outlet, a virtual shoulder to cry on maybe, and someone to explain where to go next. Talking with this mom put me right back in our own diagnosis day for Thing 1. Honestly, it was difficult to confront those feelings again–stunned at missing red flags sooner; confusion over what services are needed, where to find them, how to afford them; guilt because it must have been something I did or didn’t do that caused this; frustration trying to understand the spectrum; relief to finally have a diagnosis; fear for my children growing up in a cruel world not made for their sensory and communication needs; and anger. Anger at everyone and everything.

So…your child is diagnosed with autism. Now what? Here are my observations and suggestions on your next steps.

First, there is a grieving process, so give yourself time to wrap your head about what ASD means for your child. Talk to your spouse. Talk to your pastor. Find another parent to vent to. Whatever you do, do not wallow and stew in your anger, fear, and sadness. I could not tell anyone about the diagnosis without crying. I made other people cry with my crying, and then I felt guilty for that! But it’s okay to cry. You will go through the range of emotions, and then you’ll pick yourself up and prepare to kick ass.

Second, know your insurance plan inside and out. Figure out what therapies are covered and the coverage amounts. Learn about the autism insurance mandate in your state. Make sure you are taking advantage of all available coverage. Having mandated coverage in our state was a game-changer for our family because it afforded us significantly better services than our county’s early intervention or early childhood special education programs.

Third, learn about Medicaid waivers. In Virginia, we have EDCD and ID/DD waivers. Regardless of where you live, qualifying for waiver services requires tedious screenings (and, more frequently and unfortunately, appeals and more screenings). Your local Autism Society of America chapter is the go-to source for understanding waivers. Most offer workshops and many other resources. A couple weeks after Thing 1’s diagnosis, I called the Autism Society of Central Virginia and left a message asking about waiver workshops. Since I just missed their last one, the ASCV president called back and spent almost two hours with me on the phone, telling me everything I needed to know. That was a huge breakthrough because after that conversation, I had a plan.

Fourth and finally, join a support network. You can find this in a Facebook group, joining the Autism Society, going to a TACA coffee talk. Commiserate with other parents, ask questions, share recommendations, stay connected. Me, I started following blogs, and some of my favorites are:

Our diagnosis and psychological report for Thing 1 came with a massive to-do list. The psychologist recommended we consult with a geneticist, neurologist, and gastrointestinal specialist; increase the frequency of Thing 1’s speech and occupational therapy; and get our son intensive ABA services. We spent time lingering on wait lists, and it took 3 months to increase speech therapy, 10 months to start in-home ABA, and years to visit all the medical specialists. Sometimes it is difficult to see the forest through the trees, but we have much to be grateful for five years into this autism journey, especially the ways our family is loved and accepted.  Yesterday we threw a big birthday party for our older boys, and eleven little kids and their families showed up to party with us.  It was heartwarming to see all these neurotypical kids play with our boys and sing “Happy Birthday.” And that’s what it’s all about, right? Kids enjoying their childhood, making friends, learning, growing, and having fun. It’s difficult to see that light and feel hopeful on diagnosis day, but I promise you will get there. Water_Birthday Find additional resources here:

First 100 Days Kit–Autism Speaks

Handy Handouts

Introduction to Autism–TACA

The Out-of-Sync Child: Great book!

Wrightslaw Special Education Law & Advocacy

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