Sometimes I Forget
Sometimes I forget that my daughter has autism. This may sound strange because of all the private therapies we do, the targeted activities at home to encourage her development, her specialized preschool, and more.
It is as if our whole world revolves around autism, and yet the autism fades because all we see is our daughter.
Sometimes I Forget She is Behind
Ruby has been doing so well with her school and therapies. Just in the last 9 months she has made tremendous growth.
She went from saying 1-2 word sentences that didn’t really communicate her needs to now some 4-5 word sentences that really communicates! She directs play, she requests things, she is even starting to answer yes and no questions!
Honestly my family will be blown away when they see her next. It is like she is a new person with the world opening up to her.
I get so caught up in the progress she is making that I forget she is still so behind other children her age in speech, fine motor skills, and social skills.
Ruby will be going into kindergarten next year and part of me was thinking, oh she may be able to go into a regular classroom with some support. Look at all the progress she has made this year!
Then reality hits.
Even with all of the progress she still isn’t ready for that. And really I need to let go of the thought that if she is ready for a regular classroom that means that her future is secure, that she will be able to live on her own, hold down a job, and make meaningful relationships.
When I think about her right now, and I see where other children are, yes she does still need to be in a specialized classroom and that is more than okay.
By giving her what she needs instead of what I want her to have (a normal school experience) she will be able to continue to thrive rather than get lost in the crowd.
Sometimes I Forget Others Don’t Have the Same Struggles
Making accommodations for Ruby has become second nature. She has a tendency to wander off and not come back when called.
So at the store I just put her in the basket of the cart. No big deal, she is safe and I don’t have to worry about her wandering off while I am inspecting apples.
I remember a moment at Costco where an older child walking by us turned to his mother and asked, “why is she in the cart?”
Oh right, other families don’t have to put their 5 year old child in the cart to ensure they don’t run away…Right.
Or when some families can leave their 5 and 3 year old in the backyard alone together to play with minimal monitoring and know they will be safe. I think, what people can do that?!
When I have tried this (with maximum monitoring) so I can do the dishes, Ruby will suddenly get on top of Brandon, pull him back by the hair and poke his eyes.
Oh yes, she has always been fascinated with eyes. Then Brandon begins to scream. He doesn’t try to get away, just screams, so I rush out there and break it up. Ruby doesn’t understand what she has done was wrong, or that it hurt Brandon, and just goes on playing.
Needless to say I cannot leave Ruby alone with her siblings or pets for any length of time. She doesn’t hurt others on purpose, or even all the time, they come at random moments when she is curious to see what will happen.
Then I remember that other families don’t have this same worry and are able to get the dishes done while their children are playing together. What a distant dream that is.
Sometimes I Forget to Worry About the Future
Ruby’s future has always been uncertain.
I have heard so many stories about children who were non-verbal that go onto accomplish amazing things. They are able to not only live on their own, but to thrive and to have families of their own.
I have also heard stories of children who made great progress when they were young then went through a regression and never seemed to get back to where they were.
They lost the connection to the world and will stay with their families forever.
It is impossible to know what Ruby’s future holds, if there is great progression or regression in store for her.
When I thought about it too much I started to become anxious. So I have decided to forget.
I am forgetting to worry about her future because I have her now.
I have her sweet smiles, her adventures, her excitement, her tears, I have all of her now. So no matter what her future holds, I know it will hold her.
Written by, Amanda Gray
My name is Amanda and I am the mother of an amazing daughter with autism. I recently started my blog to help other parents through this journey, to help my extended family get to know Ruby, and for myself, to help encourage me to stay intentional with her development. You can follow our journey on my blog Developing Intentionally, and on Facebook or Instagram.
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