I’m in a few Facebook groups for parents of children that are on the Autism spectrum or are otherwise neurodivergent.
One of the things about being a parent of a neurodivergent child is that after you are informed of your kids’ diagnosis is there is nothing. It’s like, “Here is the diagnosis. Thanks for your co-pay… NEXT!!”
Typically, doctors and other clinicians don’t offer you resources, support, or give you any information. Sometimes you have to fight to get a copy of the diagnostic report.
In my Facebook groups, parents of newly diagnosed children come and ask, “What now?” or “How do I get my kid help and services?” After typing the same response literally hundreds of times in the past 5 years trying to help parents and guardians (because I had no help and had to google and claw and find help for my child and family), here are a few resources that have helped my family:
If you suspect your child may be neurodivergent, contact their pediatrician. Ask for an assessment. You may receive a referral to a psychologist. The intake process is lengthy. There are typically 2-3 appointments, plus lots of paperwork to complete. If you receive any pushback, keep pressing forward. If your doctor says no, call your insurance provider directly and ask for help. If you live in San Diego County, you can also contact the San Diego Regional Center directly for help getting an assessment.
Once you receive a diagnosis, request a copy of the paperwork for your files. You will need a copy of the diagnosis paperwork to access services.
Important side notes: Start a file/binder (I use this one) for all of your paperwork. There will be a lot of it. I also have heavy-duty page protectors and folders in the three-ring binder. I keep his IEP (Individual Education Plan), IHSS paperwork, Regional Center paperwork, a list of his doctors (including their phone numbers and addresses), and copies of the medication inserts/directions that come with the prescriptions.
If you are in San Diego County, contact the San Diego Regional Center. Any resident of San Diego or Imperial County believed to have a developmental disability may receive intake services through the San Diego Regional Center. The Regional Center can help you access services such as respite care, Medi-cal Waiver, and access to community services. For most families, Regional Center services are free or very inexpensive. The intake paperwork will go over income requirements for payment for being a Regional Center Client. Our kiddo has been a Regional Center client for 5 years, and they have been a great resource.
Once you get in touch with the Regional Center and your child becomes a client, you want to get your child on Medi-cal. This will allow them to receive the most services and can help your family access IHSS (In Home Support Services- Someone to help provide care for your child, as their special needs may mean that they require extra care or support above and beyond what a neurotypical child their age may require).
If your family makes too much money annually to qualify your child through Medi-Cal, ask for a Medi-cal Development Disability Waiver. Having this waiver for your child is really important, as it will open up so many services and programs.
Some neurodivergent children require services to help better their quality of life. Some of these services include:
- OT (Occupational Therapy)
- Speech Therapy
- Behavioral or Mental Health Therapy
- Feeding Therapies
The Regional Center Case Worker assigned to your child can help you navigate what services they can help with, and provide resources.
Note about Medi-cal: Just because your kid has it, doesn’t mean that you have to use it as their primary health insurance. For our family, we use Medi-cal to cover the gaps that we’ve found in our primary insurance. Covering co-pays for medication that relates to his diagnosis, and in the past, a few other therapies that we no longer utilize.
There are a lot of support groups online to help parents navigate life with Neurodivergent kiddos. It’s worth a Facebook or Reddit search, using your city, state, or geographic area.
There are also a lot of non-profits that are all about helping Neurodivergent people. I love NFAR (the National Federation for Autism Research), they are local to San Diego, and they have programs for parents, kids, and teens, and adults.
The Autism Tree Project Foundation is another NPO I love. They have all sorts of great playgroups, events, and resources for families of Neurodivergent people.
MOST IMPORTANT: Regardless of your child’s diagnosis, they are still your kid. Nothing changes your love for them and their love for you. If you are uncomfortable or if your child is uncomfortable with any therapies that they take part in, listen to your gut, and listen to your kid. There are some therapies that are commonly accepted that older Autists (people on the autism spectrum) recount as having negative mental or physical impacts on them.
Please seek out support- There are a lot of people who have gone through what you are going through. Lots of parents, friends, allies who can share their resources, and offer you a shoulder to cry on when you are frustrated, and hugs when you need them. I count myself among those supporters. When you need help or support, don’t hesitate to email me or DM/PM me on any of my socials.