Fly baby fly….
Recently, at a doctor’s appointment with Eric, I had mentioned that we were in the midst of looking at colleges for our daughter. Immediately, the doctor said “Oh that’s gonna be so awesome for her. She is really gonna be able to have a chance to spread her wings now.”
It kinda stabbed me in the heart a little bit…
Was she insinuating that life with Eric was holding my daughter back?
Was she implying that our daughter felt in the shadows at home?
Probably.
This doctor is all too familiar with the special needs family dynamic.
She knows that it usually takes two adults to manage doctor’s appointments.
She knows that typical siblings have to usually grow up faster than we would have liked.
She knows that sometimes the siblings aren’t able to do things they want to -because of limitations that their special needs loved one may have.
I have definitely struggled to find balance over the past 10+ years with our daughter. We are quite fortunate that we have an insane amount of help from our family. Someone has always been able to help watch our son, so we could go somewhere with our daughter—but I have resented the fact that there are limitations to what we could do as a family.
Autism affect so many simple every day “family” things that typical families may never give a second thought:
- Vacations: We have taken our daughter on vacation, while our son stays behind with his grandparents. It’s always hard to fully enjoy the trip while also wishing our son was there too. But unless it involves an amusement or water park, it’s probably not going to keep our son happy. There are places we want to visit – and want to be able to visit with our daughter – and just wish that we could do this all together with our son too.
- School and school functions: Our kids ended up going to separate schools. Anna has always wished her brother could go to school with her. A few weeks ago we had to take a shuttle bus somewhere – and it was a school bus — she was SO excited and proudly exclaimed to me that it was their first time on a ‘school bus’ together. It was both adorable and a little sad.
- Family parties: While there are several things Eric can attend; it’s some of the more special ones such as weddings or fancy parties that would involve being quiet, or sitting in one place for an extended period of time that he can’t attend. The extra sting comes when there are family photo opportunities – since the photo’s are always missing a very important member of our family.
- Milestone events: Such as graduations, sacraments or ceremonies; or even his sisters sports events – we always find a sitter for these as we know he won’t enjoy them, and if he comes neither will we. Someone will have to miss part of it anyway and follow him around as he explores; or we have to sit in the car if he is too loud; or we might just end up going home early because he wasn’t able to stay.
- Every day life: Some of the hardest moments are even the simple- daily tasks. Everything takes extra coordination. If I have to run an errand, I could have to battle a meltdown just to get him out of the house unexpectedly.
When people ask how old my kids are, and hear 13 and 16, they start their “things are so easy” for me now speech. They can ‘take care of themselves’. They are ‘independent’. We can ‘leave them home alone’ if we need to. I usually just nod and say “yep, you’re right” because I’m too tired to explain. Too tired to say that I’m not sure life will ever get to the point where I can describe it as being easy. Too exhausted to say even at age 13 my son still causes messes as if he was a toddler.
So for these reasons, and probably a zillion more – the doctor was probably right. We probably have held Anna back in many ways. I’m sure there were several (countless) days and moments where she felt in the shadows at home. I’m so excited for her future. She is destined to do great things.
Right now I can have one foot in both worlds and step out into her world and feel like I get to experience life as a typical mom. I hate to admit it – but picking up my daughter from gymnastics practice counts as a social event for me. And without her around – I won’t have that “excuse” to get out of the house anymore. LOL…. I know lame. But I can’t help feeling that as she spreads her wings to fly, it will feel like my own wings have been clipped.
—-Mrs. B
#autism