Welcome! I’ve been a member for probably all of a minute in the Internet world. I’m no where near a veteran of this fight, but this is what I recall feeling from the start to now.
1. Take a breath.
The moment E’s speech therapist mentioned having her evaluated for autism, my mind went into hyperdrive. There were so many steps to accomplish, so much to research. Where do I start?! Those words were just the start of a very long road with many months long wait lists to see specialists. I hurried to get things done to sit around for months waiting for the next step. There’s time. Breath.
2. Confusion is normal.
When the Developmental Psychologist confirmed the diagnosis months later, I just sort of hit pause for the day. People would ask, “how do you feel about it?” And I didn’t have a response. It was a relief to finally get to the end of this leg of the journey. It was worrying to consider the future. I still have a hard time imagining E’s life past kindergarten. It was numbing to acknowledge that this is real, this is our normal. Not speaking, sensory adversions, sensory seeking, meltdowns, it’s not just a stage she’ll grow out of. Maybe, or maybe she will. Nothing is guaranteed.
3. Accept help. Ask for help.
It’s easy to feel isolated from your friends. They aren’t living your day to day. Some may not get it. But I promise many will try to. Open up to them. Talk about those emotions you can’t define, voice your concerns. They are here for you. Don’t distance yourself. Accept when they offer to take the kids for the day. Meet them for those play dates. You don’t need to be an island. Take the hand they are holding out.
4. The Internet is a double edge sword.
There are so many resources and support groups. I find the special needs parenting groups on Facebook to be helpful communities for bonding, venting, and information. There is also the other side of the coin. Some communities are not helpful. Internet trolls are vicious. Inaccurate, but vemenately assured of themselves articles make you feel like a failure or that the future is hopeless. The Internet takes weeding out to find the good. But once you find it, you’ve found your new home away from reality. It’s worth wading into.
5. Remember to enjoy life.
When we first started E in therapies we were in and out of doctors offices and seeing one therapist or another four times a week. Even when we cut down to two hour long sessions a week and an inclusion preschool, it was still exhausting to maintain with all the other planned activities. At one point, I had to stop. We reduced the therapies and stopped the scheduled activities. I was exhausted. E and A spent far too much time participating in structured play. I forgot how to just enjoy sitting still. It had probably been eight months since I’d last read a book for entertainment purposes only.
Now that we’re keeping a more realistic schedule, everyone is happier. Better still, E has been developing into her own person and growing her linguistic skills at the same time. Every time she acts out a movie scene my heart soars. Who ever said tv doesn’t teach you anything has never experienced a limited verbal child yell “go!” along with Frozen.
6. It gets better.
Sometimes I would wonder what will happen. I can’t predict the future, which is frustrating as I prefer to plan everything. Each time a friend of mine sees E after a month or two of not, she always comments on how amazingly far E has gotten. “She just said hi!”, “she’s playing with the other kids!”, “she is doing so great!”
I am with E every day. It’s difficult to celebrate the small growths as sometimes I just don’t notice them until someone else points them out. When I stop and actually look back at life before we started this journey to now, I can’t help but feel joy. Absolute joy at the resilience and determination of my little girl. She’s already come far and she’s just going to go further.
So welcome, welcome to this wonderful and unique world. Remember to enjoy the view.