My Child Has Autism, Now What?
Updated: Apr 13, 2022
I've decided to document all of the hoops that I'm having to leap through in order to get Josh into the correct programs, therapies, specialists and schools since getting his diagnosis four days ago. Maybe I can help someone else in the future figuring all of this out.
Let's start at the beginning of this whirlwind (four days ago)...
On Friday we got the diagnosis. Before the therapist gave us the results, I was expecting her to say he wasn't on the spectrum and was simply quirky and extremely particular. Upon hearing her say "Your son is on the spectrum", it took me a minute to process what she said. I was expecting to hear the opposite, not that. It hit me like a freight train. I held my emotions in. I was in the middle of making dinner while I had been on the phone with her; my in-laws were over and I have to be careful about letting Josh see me cry because he'll get very upset if he sees me upset.
I wasn't upset about him, I was upset for him. I was (and am) worried about how others will perceive him. Will they be accepting? Will he be bullied? Will they be understanding about how he acts? What will our life look like now? What does this mean for Matt's career? What does this mean for how often and where we move? Will I still be able to homeschool? Will I have to hand him over to public school education (which is the one thing I was never going to do). So many questions as soon as she said his diagnosis.
I cried that night. I held it together until my in-laws had gone home and the boys had gone to bed. I then read the entire pamphlet from Autism Speaks https://www.autismspeaks.org/newly-diagnosed for the families on newly diagnosed kids (tells you about Autism Spectrum Disorder and what you can expect now) while crying. I then cried some more on the couch while Matt held me, drank some alcohol and ate lots of junk food and candy.
I decided I wasn't going to do anything through the weekend. I wanted to enjoy my family and take some time to process before diving into phone calls and inquiries.
Now that we're into the week, it's go time.
I joined the San Diego Autism Support Group on Facebook and started asking questions and you know what? I got answers! Everyone who has been in my shoes understands the overwhelming feelings as I try to navigate through this because they have already done the beginnings of navigation.
I called the EFMP San Diego to start the enrollment process into that. The director explained exactly how I return the application, to where I return and where to go for any other questions along with returning to her for those questions.
My neighbor came over and helped me figure out the San Diego Unified School District to get his IEP and application for Special Education Preschool Assessment https://docs.google.com/forms/u/0/d/e/1FAIpQLSeCOUNslln8qH4lprbADiYyegeO7IMnTrUeT0hhxx9f8wHxRw/formResponse. She helped me fill out the application (I always misread those and had some questions about the application in itself) and chatted with me while the boys napped.
I have to wait for the San Diego Regional Center to get back to me to continue the process with them since Josh now has a diagnosis.
I spent a bit of money on books: The Reason I Jump, Positive Parenting for Autism, A Parent's Guide to High Functioning Autism Spectrum Disorder, An Early Start for Your Child with Autism, Forever Boy, Connecting with the Autism Spectrum, and Uniquely Human: A Different Way of Seeing Autism.
I'm curious to which books will be the most helpful and/or eye opening.
We are now in the waiting stage for everything. I was told to start everything as soon as possible because it truly is a process to get it all going so I feel moderately accomplished. Now I just need to be patient while waiting.
I ordered notebooks, pens and folders to keep track of programs, therapists, phone numbers, emails, addresses, what does and doesn't work, and thoughts in general about all of this. There is just so much happening all at once that I know I'll need to be as organized as possible to try to keep my sanity.
I'm so happy I decided to be open about all of this. This is too much for someone to try to hold in and not talk to anyone about. You really need to be open. Ask questions and be open to all of the help offered. The first thing I've learned about our new world is that everyone is extremely nice and helpful and we are certainly not alone.