No one ever in a million years would think this could happen to their child. But it did . To mine. And let me tell you something else! I had so called “friends” that abandoned me when they found out my son was diagnosed. He’s not contagious you morons. He is different. He is loving, caring, funny… he is just…Jack.
I’ve learned to navigate, ask questions , be a parent member for both CPSE (committee for preschool special education ) and CSE ( committee for special education) for many years with my school district. I’m grateful for what that has taught me. But I still had no one who I could talk to who actually “got it”. I want you to know that if you’re reading this and you feel this way please contact me. I do not want anyone to feel alone. This is a judgement free zone. Not all special needs kids are the same of course and every parent thinks they’re doing the very best for their own child.
I had no “special mom” friends 15 years ago. There was no special sensory play gyms, or places to get together or even mom groups. It is so important to find your tribe. There are resources now that I wish I had back then. Facebook was just coming out, there was no instagram.
Now there are a bunch of resources right here on Long Island ! I recently attended a fundraiser for a local sensory gym and was a sponsor for the raffle. What an amazing place it is and I wish it was around back when Jack was little I probably would have been there every week. There’s a local movie theater that has special needs movie times. ( so what, it’s OK if your child stims, gets up, or has an outburst!) you can even rent a small room in the theater for a party or a special viewing.
I was so scared to venture out of my home. Honest. I didn’t know what to expect, two special needs little ones could have meltdowns at any minute …. but then I realized years later that was so ridiculous of me to think that way because any typical child could have an outburst at any time. Is it overwhelming ? YES. I know. Sometimes it’s just easier to stay home. (Which I did a lot) and I was ALONE. No one “got it”. There was no getting a babysitter for the night and going out with my husband because first of all: how do I know that they were going to understand him, second of all: I don’t trust people so the only people that I could rely on was my parents and sometimes his home teacher.
Fast forward 15 years and life for special needs kids has changed for the better. My older one is totally fine ( special preschool and OT for sensory needs , went to Montessori a few years and then a private school and he is thriving in college) My son with autism who was completely non verbal is talking. Not like you and I in relation to sentence structure, but he is talking. He is really a funny boy and loves to go shopping. He absolutely loves walking around the Hall of science in queens ( did you know that on sundays from 10-11 admission is FREE?!!!) He’s come very far. He actually had his very first play date (at 17 and yes I was emotional) to Target and McDonald’s. I had his birthday party at that movie theater with popcorn, drinks and I was not invited. He said only friends. I respect that, it’s typical I guess. So he went on a field trip with his class and they had a great time. He is happy, and I am happy too. It took so many years to understand how this impacts his life. And mind you I will NOT use the word disability. I look at all the amazing things these kids and adults are capable of. Things that you and I could never comprehend or understand with our brains. Here’s an example…. one day I was writing the number 8. I said to my son” what is this?” He turned the paper on it’s side and said “eyes”.
They see things we can’t. It’s amazing. There’s so much inside their heads I wish I knew it all. I’m really very proud of him and all of the kids that have special needs. They work harder than we ever will in our entire lives. They go to therapy they go to school, some have therapy after school. These kids are exhausted but it’s the only life that they know if you think about it. So yes, I get it, moms.It’s hard AF. Do I worry about him all the time? Absolutely. Do I sit here and think about his future when I’m not here? Every damn day. There’s a lot of preparing to do when it comes to that. Do I question a lot of the things that I do still to this day? Yes-every day. All I know is that I am doing what is best for my child just like you are.
Use the resources available now. Message me. You’re not alone. I’m not a therapist. I’m just a special needs mom extending a huge hug and an ear to you. You’re a ninja. A warrior. This is my motto and has been all along: Fight for them because you are their only voice and time is not their friend.
Amy is the Mom behind Blonndi’s Naturals: Soaps and Bath Luxuries. You can find her on instagram at: https://www.instagram.com/blonndisnaturals/