In a few hours, my family, plus my brother’s in-laws, will be gathering to celebrate the birthdays of my two beautiful nieces, Lacey and Anna. I want to go. I want to see everyone and I want to have fun. But, as an autism mom, family dinners are something to be enjoyed – and worried about.
In my head, I know it’s silly to even worry about it. I know that everyone who will be there loves and understands Casey and Rob. I know everyone will help me watch them (the party is at a campground and close to a river). I know that Casey is so excited about celebrating their birthdays she can’t stop giggling about it. (Casey loves birthdays and firmly believes everyone’s birthday needs to have cake, presents and balloons – whether the birthday person wants them or not.)
Rob isn’t as excited about going. He’ll go and he’ll be excited to see Uncle Jeff and Grandpa Mack. But he probably won’t enjoy it like Casey will. He will be in a strange place, with people he doesn’t know well. If the campground is busy, there will be lots of strangers around. He won’t want to eat anything and he won’t want to sit for long.
So, autism mom’s head is racing with crazy thoughts. Should I take his iPad, even without WiFi? Don’t forget his spinners and his fidget cube. Don’t forget chairs. Will he yell when he is stressed? Will she try to eat before it’s time? Will she grab at people’s shoes to see their socks? Don’t forget their birthday cards. Maybe I should have asked Tracie to go, just to have someone else.
What’s the weather going to do? The crazy storms of the last few days have not been good to him. (and the fact he is STILL asking for the van!) Will Casey be careful on the playground with smaller children running around? And on and on and on. Anyone with a child with autism knows exactly how I’m feeling. I want to go to the party. Everyone loves the kids so if they do have issues, it won’t be any big deal. I want to see everyone and I want to relax.
But… there’s always a “but” isn’t there? Sometimes, it just seems like too much work to go new places. I know they need to do it – I know they will probably be fine. And I know I get so tired of worrying about it. Sometimes, autism is not my friend. Sometimes, I just want to toss chairs in the car, grab birthday cards and go. Especially to a family function – what easier place is there to go than with people who love you?
No place, but sometimes, it’s still hard. I’m lucky – my family has always been supportive of the kids. I’ve never had to deal with family members who say autism isn’t real or that if I spanked them enough, the autism would disappear. I’ve heard stories from other families. It’s insane, but true.
If Rob yells, others will help him calm down. It won’t have to be me. But I feel guilty and autism guilt sucks worse than plain mom guilt. If Casey grabs at socks, she will be reminded she needs to ask first. I may not remind her, but someone will. They are both loved.
We could stay home tonight. I could just put my comfy clothes on, pick up my book and kick back. I could tell Casey the party was canceled. If I write cancel on her calendar, she’ll be ok with it. The sky is getting cloudy. Rob is a little loud. We’ll just stay home.
But – I miss my brother and want to celebrate with my nieces. I don’t want autism to rule our lives. So, we’ll go. And Casey will grab socks and sneak food. Rob will rock and squeal. I’ll sit close and try to relax. Jeff will tell me to chill out.
Decisions like this may sound silly to anyone who doesn’t have a child with autism, but they are all too real to our family. Staying home isn’t fair to Casey, but Rob may not enjoy it. Every day, little decisions that other families make without a thought are major decisions. Whether to go. What to eat. Whether to attempt a trip to the store. Believe me, I understand your thoughts.
So here is my advice. Go. Take whatever you think you may need and ignore people who say you are coddling to your child. Do what you need. Take food they like – if the hostess doesn’t like it, too bad. Take their fidgets. Take their headphones, security blankets and whatever else they need. Don’t let what might happen keep you from experiencing life beyond your home.
Really – what’s the worse that can happen? A meltdown? Been there, done that – and you know what? I’m still here. The kids are still here. They are happy. We all survived. I may have had a crying meltdown when we got home, but no one had to deal with that but me. Meltdowns may never go away – mine or theirs!
So grab your supports. Take a deep breath and go. Experience the world and help your child do the same. If it doesn’t go well, have a cry and move on. I need to go pack a big bag of tricks – we’ve got a birthday party to go to!