To the Mom who Just Heard the Word "Autism"

Hearing the word autism thrown into a conversation describing your child, was not on your bingo card this year. It wasn't ever on mine either. You just sat through the most unusual 30 minute evaluation of your life, where they scored your child on all the things they couldn't do. You're feeling so foreign in your own body, and you can feel a subtle rage building. You will stay polite and respectful, but you will silently burn. Remember this energy, it's going to be important down the road. That's the Mama Bear, the Lioness, the Tigress. You will soon get to know her very well, if you haven't already. Right now she is angry, but you remain steadfast... for now. You will make it to your car without killing anyone, I promise. The unexpected, and short lived relief comes. Deep down you knew, because Mom always knows.

The Relief Ends

As quickly as it comes, it ends. You were handed a 15 page packet on all the "resources" you have available to you. It isn't much. You have about 5-8 appointments that you need to schedule, and you still need to google, "What happens if they incorrectly diagnosed my kid with Autism." Oh, and don't forget to pencil in some time to cry. You barely get showers these days, so you might need to find a closet or fake doing some laundry.

I wish I could sit with you. I would say hug, but I am not all that crazy about physical touch myself, so just sitting would have been what I needed. I would tell you to breathe; to cry, to grieve, to sulk, but deep breaths. We have to quiet your brain that is sounding every single alarm right now. It's loud in there. But your brain needs oxygen, so that we can start rewiring it. The parent you were is no longer with us babe. She burned up in that evaluation room. I am just going to sit here with you in the ashes, until you are ready to rise.

Do Moms ever Get to Rest Long?

Let me help you up. It's okay if you feel weak, I got you. It's time. I need you to look in the mirror. You are now staring at an "Advocate".

You maybe weren't super inviting of another title. But it's yours. I mean shit, add it to the list. Executive Custodian, VP of Crisis Management, Snack Bitch.... and now Advocate. We are going to have to give that one a name it deserves, as we have to stick with the dark humor theme over here. I don't know, I am kind of living for, "President of the TRY ME club". We will see if it sticks.

That energy I told you to remember in the evaluation room, that fire, that burn. This is the energy you will harness as your child's advocate. (or should I say Prez of the TRY ME club) You are going to fight tooth and nail to get your child every single fucking thing they need and deserve. You know your child best. Yes, a complete stranger just diagnosed them with this foreign term, but your child is still, YOUR child. You changed in that room, but they did not. They remain exactly as they are, untouched by the realization you have had to face today. Keep that fire for them mom, they need you now more than ever.

Lets Make a Plan

Most of this information is going to be state (area) dependent. Every state has its own rules and office titles. For reference I live in New York! We have what they call the OPWDD. (Office for People With Developmental Disabilities)

You will want to get started on getting as many resources for this disability as possible. This can be all kinds of things like activity classes, museum passes, sensory toys, community hubs, diapers, safety equipment, or respite (hired caretaking) etc. They don't provide these items/services, but can sometimes offer reimbursements up to a certain yearly amount. They can also direct you to the facilities in your community that might have special opportunities for kids with Autism.

Next, start looking at special education school programs. Do this as soon as you can, as in NY, there can be long waitlists. If you were in Early Intervention, most likely still are, your EI Coordinator should be able to give you all of this information and list the Special Ed schools near you. This is of course if you want them in a program or a type of school at all. That is personal preference, and like I have always said, mama knows best! Julian made amazing progress his first year in our special ed school program.

Keep up on those therapies mom! I know having therapists in your house all day every day can be so rough! It never felt like it was ever working either. But that is the name of the game with Autism. SLOW PROGRESS. You might question if it is there, but it will show up later. Promise! And fight for the therapies you think they need, outside of the OT/PT & Speech, there is Feeding Therapy, Music Therapy, and of course ABA Therapy.

Start the safety protocol overhaul. You are going to be exactly one step ahead at all times. This will be super individual depending on your sweet angel! But think about security systems, door alarms, locks on chemicals, safety beds, AngelSense Safety Tracker, put up a fence, sensory safe materials and toys, etc.

You decide if and when you want to share their diagnosis. I waited 2+ years to share. And I would be lying if I didn't say it was because I felt embarrassed. It took me educating myself, and rewiring my brain to understand Autism for what it is, for me to have the confidence to tell people. There are many theories about Autism, and many define it differently. Make sure you pick what resonates with you and your family. The Autism Spectrum is large, and our diagnosis realities can differ widely.

Out of pure transparency I want to share what resonates with me and my family. We define Autism as a different way of experiencing the world. Not broken. Not less. Just wired uniquely.

We see them as simply having a brain type. This type is known as neurodivergent. So they of course are going to learn at their own pace, as well as find very unique things they will love or hate! They won't be "typical" because they are not like the current majority! We have learned to follow their lead, listen differently, and communicate with energy.

Truly in a world that is lacking, they are transcendent.

So here is the actionable plan:

(I must have bulleted lists, as they are the only way my brain goes forward) 'Tism?

• Sign up with your local disability agency

• Look into special ed specific schools in your area- get on the lists

• Keep up with or even amp up your in home therapies- fight for more

• Implement safety protocols in your home

  
  

FIND YOUR COMMUNITY

Don't wait like I did. I know the term is typically a village, but we aren't typical over here. I defined village as family, and I didn't have much help in that department. I roughed it with minimal help for 3+ years. I did all the research alone, I put all the fires out alone, and I suffered doing it alone. Most of you won't have family members with experience in Autism, or friend groups, or neighbors that just so happen to be in the same boat. I hate to say it because social media can be a blessing and a curse, but it helped me find my community. And I am such a better Autism Mom for it!

I am here cheering for you. We celebrate the small stuff on this side.

Welcome to the club Mom, that you didn't really want to be in. The club where we are all just Orbiting Autism.