This week I started watching on ROKU** a show my sister had been recommending to me for months – Parenthood. (It’s loosely based on the 1989 film of the same name with Steve Martin.) I watched the pilot episode with my Mom and now I am hooked. A big reason why I am is the reason my sister recommended it in the first place. One of the couples has a children recently diagnosed with autism. She said I would see Ward and I in the parent characters. She was right.
What this show best depicts about families with special needs children is the all encompassing demands and single focused devotion your life becomes to that person. And – how your life now includes about fifteen – twenty other people, from varying professions, who all have an opinion on how you should raise your special needs child and they are not afraid to tell you exactly that. (Some of this information is solicited by you and some isn’t.)
Imagine if every educational decision you made about your child involved the input of at least 12 -13 other people? (This is not an exaggeration.) Also – imagine that maybe three people agree with you, one conditionally, seven people all agree with each other but not you and one or two people have their own individual theories that don’t include yours. The ones that don’t agree with you think you are ruining your child’s life. Some may actually say something to that effect and some may imply it. The ones that merely imply it say things like, “You have to do what feels right.” (No concept here you are capable of making rational decisions based on careful information gathering. You are a parent and by definition irrational.)
I am a reformed social worker. I know what that statement means. It means, “If you want to ruin your life there is nothing I can do.” I am finding that pay back is a bitch.
This phenomenon is ever more present right now because Ward and I are in the midst of a trying to figure out what is the next best step for Thorin educationally. Actually, Ward has decided what he wants for Thorin and is waiting for me to catch up or throw out another idea for consideration.
He will be patient because the shoe has been on the other foot before. We know not to pressure the other person.
We have learned for the most part when to proceed with caution and when to storm the gates. We know more than any-of-the-others-in-our-life that these decisions we make are ours alone and the consequences are ours and Thorin’s to live with.
If you talk to a parent of a child with special needs you will hear a familiar refrain, “You’re not in this to make friends.”
True dat – for the most part you are here to “Take names and kick ass.”
* This is the first in a series of posts about parenting children with special needs and some of what that entails. (Needless to say, part of what it entails is really mixed feelings about your service providers and the complicated relationships. I am trying to figure it out as I go folks.)
**If you don’t know what ROKU is Goggle it. You won’t be sorry.