It’s been over a year since my youngest son, Julian, was diagnosed with autism. The doctor’s decision didn’t come as much of a surprise. Julian has several autistic characteristics, including being nonverbal.
Even though I wasn’t shocked to hear the diagnosis, I still felt a rush of panic throughout my body. So many thoughts ran through my mind in that instant.
How am I going to fix this? Should I have been more aggressive with his early intervention plan? What do I do now?
The doctor offered very little help in terms of an action plan for Julian. He gave me a few pamphlets, and tried to send me on my way.
Luckily, in anticipation of the results, I already had a few questions prepared. But it wasn’t enough. After the appointment I felt more lost than ever.
I didn’t know where to start getting help for my little guy. The doctor gave me a list of ABA therapy providers, so I began making calls. I wasted 3 days talking to different agencies. I was beyond frustrated.
By a stroke of luck, someone in my twin-mommy Facebook group directed me to a local organization that could help. This mom, who lives across the country, saved me a great deal of time and frustration.
So in an effort to pay-it-forward, I want to let other moms know what organizations have helped me along my journey.
1. The Autism Society of America (ASA)
My Facebook-mom-friend directed me to the Autism Society of America (ASA). I looked up my local chapter online. (You can find your local chapter here.) They offered a free ‘Autism 101’ course for parents new to the world of autism.
I learned the ins-and-outs of autism in my area. She gave me helpful information, resources, and insider advice. I left her office with a plan – a roadmap. I was no longer lost. I felt empowered.
Our ASA has parent meet-ups and family events regularly. After a few months, I started participating in some of them. It’s been great to meet other families in my area.
2. Julian’s ABA Provider
Once Julian started ABA services, a team from the agency came out to meet with me. They have their own wealth of knowledge about private insurances and Medicaid.
They were able to navigate through roadblocks and connect me with an organization who would help me in I needed it. My ABA team continues to offer me support whenever I need it.
3. Medicaid Advocacy Groups
These organizations help parents acquire services for their little ones. Individual states have their own groups. Local ASA chapters can provide information about groups in your state.
In Virginia, I’ve been working with Moms in Motion. I remember hearing about them from the ASA coordinator, but I never thought I’d need them… That is until Julian was denied for a service I requested.
Our ABA therapist put me in contact with a MiM service facilitator. I feel like I have my own lawyer when I talk to my MiM rep. He not only helps me find resources I never knew were there, he has no problem fighting the battles I’m not comfortable fighting.
I’m still a newcomer to the autism community, but I feel much more knowledgable than I did just starting out. My journey has certainly been bumpier than I described here, but these 3 resources helped me tremendously.
What organizations helped you? Where did you find the most help?