Last night, after a weird day at the pool and a huge rainstorm, we decided to go to Downtown Disney. A lovely time was had, wrapped up at T-Rex, which does a great job of catering to special diets. (The chef actually comes to the table!)
Afterwards, we head home and we get about a few yards from our hotel when there is a dead stop for a nasty accident. After the officer couldn’t be bothered to help us find a way around, we found an alternate route and made a u-turn.
Now, you probably know that children with autism don’t like u-turns. Zoe generally melts down but it’s often brief, however, she already knew the route to our hotel and didn’t undertstand why we weren’t going there. It was not a meltdown, it was pure anxiety and the further we got, the more anxious she got. It. Broke. My. Heart. I did everything I could to comfort her, but she was stuck in not understanding why we went this way, or what was happening
And that’s it, then, that’s the real truth of autism. It’s not a gift. No, it’s a burden for my child who suffered terribly this evening, with no relief, no matter how tight I held her, how much I stroked her arm, how I prayed or comforted her. Nothing helped, and all I could think is how is she going to cope in life with this albatross around her neck. It’s not prejudice. All that happened was she whimpered as we left the car and then she put herself to bed and was asleep in about 2 minutes.
For a refresher course in what autism “means” to us, here is a list of the on-again off-again disabilities my baby has had to deal with:
- inability to sleep
- years of diarrhea. YEARS.
- inability to potty train
- inability to control emotions
- inability to communicate
- inability to wait for anything
- food sensitivities
- inability to socialize enough to have friends at age 7
I don’t need anyone to tell me how “great” autism is, or what a blessing the added intelligence that my kid may or may not have that she is unable to express anyway, and if you meet me, please oh PLEASE do not refer to her as an “autistic” child. She is a human FIRST, and this, to her, is nothing but a burden that will make life somewhere between challenging to impossible.
Meanwhile, we ARE enjoying vacation and she IS making strides and we are DEEP into behavioral rewind, but all else is well. See you on Monday…
Suzanne says
((Hugs)) Gina. That poor kid. My girls really loved playing with Zoe and Amelia the other day. I wish we lived closer so they could play more than once a year.
Gina B says
Thank you Suzanne! I was really proud of how they played with your kids, it’s something that may not have happened some years back. Glad they had fun 🙂
Jolene says
Gina, i am a HUGE fan! And i feel your pain having a child with autism myself. Maybe its just with my guy but i usually see regression right before huge advancements. I know its hard but hang in there!!
Gina B says
Thank you Jolene. I hope that’s true! We’ve seen plenty of regression / rewind and yet great leaps forward too. It’s very confusing 🙂
Melissa Long says
Thank you for talking about the fact that autism is NOT a gift. The only people who say that do not deal with autism or , if they have a child with autism, they are delusional. Its interesting that you describe autism as an albatross around your daughters neck. What a fantastic way to describe autism! I truly feel for our kids and I wish I could take the worry, pain, etc. away. You keep it real in your blog and I really appreciate that. Thank you form of sugar coating the life that those of us with children who have autism deal with. I hope the rest of your vacation isn’t too stressful!
Gina B says
Thanks Melissa, that’s encouraging! No, the rest has been ok, well, mostly 🙂
Diana Gaines says
But you know what the problem is here? I’m autistic and I’m nothing like Rain Man. I’m now an adult great with verbal communication, I’m not as good in math and the differences keep piling up. You see, autism is very broad. No one diagnosis is the same and therefore when we think of Rain Man we must think of Rain Man as ONLY Rain Man. He is one symbol of the countless symbols of real people out there that have autism. I think that’s what makes our autism community great. We all are unique in our own way and we all have the opportunity to have our “voices” heard. Sometimes that voice is not a verbal one, sometimes it is heard through our art or music or some other skill or talent we have or simply a smile at our family members. Each and every individual with autism is a new and unique symbol of what autism is today and will be for our future.
Gina B says
Because of your link and the fact that you discussed something I didn’t bring up at all, I’m wondering if this is spam. I’ve never mentioned Rain Man, and I certainly advocate to support and appreciate people with autism. Zoe does have wonderful gifts, I’m not saying she doesn’t. She’s unique and wonderful and a great kid, but her struggles weigh her down. I don’t even have a good gage if she can live on her own or hold a job or actually live out her dreams – which I’m sure she has, even if she can’t communicate that yet. Anyone who can self-advocate is blessed, and truly I wish that for my own children – but I have to help them get there is they can and to prepare for the possibility that they can’t
Hach Rose says
Children with this condition, I would like to refer them as special and gifted not that word “autistic” because as you’ve said they are still human with feeling although they find it hard to control them or show them. I adore you for being a strong parent, wish you still enjoy your vacation. Thanks for sharing you experiences, it was worthy of my time reading.
Gina B says
Thanks, Hach! “Gifted” is a term for a certain set of skills that I don’t believe my daughter has at this point, but certainly many kids do qualify. They are special to me, so I’m good with that, lol 🙂