It’s been almost six months since E was diagnosed. I look back at my life a year ago, and it is completely different. The most noticeable difference? I use a Kindle Paperwhite now vs. the regular Kindle obviously. I will never go back. The less noticeable differences? I live in Ohio, and my baby E was diagnosed with Autism. I didn’t sleep the first few months after the diagnosis and I absorbed every book written on the subject of Autism. I learned a lot, but there are a few things that they didn’t mention in any of my books and I’m talking about them here.
It is impossible to be shy when you have a child with a disability. If you were shy before the diagnosis, it’s put aside immediately. Firstly, dealing with doctor after doctor, therapist after therapist, insurance rep after insurance rep, you have to learn people skills. Secondly, you draw attention everywhere you go. All eyes on you.
When I go to the grocery store with my kids, I go to the grocery store. Everyone knows we are there. E doesn’t stay buckled into the cart anymore. He has mastered the unbuckle himself. While I am proud of his skill and dexterity, it presents quite a few challenges. He also screams like a banshee, happy or sad. Once again, I am happy that he is being vocal, but it’s rough on the ears, and it draws quite a bit of attention. When I bring him to the store, I have two options. 1. Bring the stroller. He can’t get out of the five-point harness, and he will stay buckled in the whole time happy. Usually. But then, I also have to push a cart. So the spectacle I make draws quite a few comments. Mostly sweet, but we make ourselves known. Option number 2. I wear him in the Ergo. He likes this for about five minutes. Then he starts to scream, and claw my face and hit me. I power through, and just put things randomly in the cart as I power walk the aisles and hope that I can make a dinner out of something that I’ve grabbed. Cabbage and Baked Beans. You’d be surprised. This with A at my side, “ Can I have this Mom?” “Can I have that?” “This just has just an eenie meenie minie mo bit of sugar in it” “Mom, watch me do this trick” Like I said spectacle. No way to be shy. I have my manufactured jokes and small talk to respond to every quip thrown at me.
With all these people skills you are forced to learn, you think you’d be the life of the party. But not so much. Hanging out and/or talking with friends kind of feels like you are bringing the water balloon to the party. There is an episode of Friends, where they are playing rock, paper, scissors. Joey tries to trump it with fire, and Phoebe trumps it with water balloon. The water balloon is the trump of trumps. This is me when I talk to my friends or go on playdates. Your problems are always such a downer. 100 times worse. I want to join in the conversation, but it’s the equivalent of someone saying, “Oh I tripped on a rock and stubbed my toe” and you say, “My mom died tripping on a rock” and then its just silent and the conversation is over. They talk about their kids throwing a tantrum, and you say, excited to join in, “Oh yeah, E had one last night and he cut open his head again. All his pajamas are getting blood stained and I am just getting so tired of trying to get it out of clothing. Do you know of any good stain removers for blood?” To me this is so casual, and I think I am adding to the conversation, but to them, they are horrified, and it ends all conversation there. Or worse, people are afraid to vent to you because they don’t feel like they can. They feel like their problems pale by comparison. They apologize before they talk, “I know E is ten times worse, but…”
Keeping friends when you have a kid with a disability is hard. You rarely have any extra time for friends, and also you’re going through the five stages of grief all the time. It really interferes with the carefree positivity you used to have. The stages bounce all over the place too. One day you’re in Acceptance, and you feel great and you text all your friends because you feel so happy and back to yourself again, and then the next day you are whiplashed back into Depression. Then Denial. Then Anger.
However, the friends that stick with you though all this are the keepers. They’re lifers. And if they’re lucky, you can share with them your newly acquired social skills.