Overdosing on Therapy (the real cost behind it)

Diagnosis: the identification of the nature of an illness or other problem by examination of the symptoms.

So from the get-go, the doctors have been telling me my son has an illness or problem.  Hmm….. 

It’s been just over a week now since we parted ways with our in-home ABA therapists.

I feel like I can breathe again.

I have my family back.  I didn’t realize just how toxic the situation had gotten until my husband said the other day, “Do you realize how much calmer you are now?  Big C and Little C too.  Everyone just seems…happy.”

He’s so right.

My little guys and I are sponges.  If one is stressed out, the rest are.  Now that the poorly implemented ABA therapy is gone (I have to say poorly implemented because I know there are some amazing ABA therapists out there), I feel normal again, or at least our family’s version of normal.

With a sense of normalcy came an epiphany last week: I need to stop trying to fix my kid.

He doesn’t need fixing.  He just needs my help.  Shame on you medical community for making me think otherwise.

He needs help learning to cope with his sensory overload.  He needs help learning how to express himself more clearly to others to avoid his own feelings of frustration. He needs help learning how to use his words rather than his fists when his emotions overtake him.

I don’t give a shit if he likes to line up his toys and his Cheerios.  I don’t give a shit if he likes to suck on turkey lunch meat to calm himself.  I don’t give a shit he has to run his hands along the surfaces of a new room.  I don’t give a shit he has to smell everything.  I don’t give a shit that he echoes back what people say.  I don’t give a shit he talks about subjects out of context.  I don’t give a shit that he expresses himself through leaping, jumping, and spinning.

I don’t give a shit that he doesn’t meet the doctors’ definition of “normal” or what I’ve come to know as “neuro-typical.”

I think that my son is awesome.  I think that my son’s quirks are adorable (most days).

Why do I need to try and eradicate that behavior?

Shame on you medical community, hell, shame on you society as a whole, for making me think I need to.

What I’ve come to realize is that two separate medical communities gave my son an unhealthy dosage of therapy recommendations.  The doctors that diagnosed Big C spent all of an hour with him, then doled out pages upon pages of therapy recommendations: 40 hours of intensive ABA therapy, social skills training, parent training, speech therapy, occupational therapy, physical therapy, genetics testing, all sandwiched between paragraphs of text about our role as parents and what we should be doing.

As a parent new to this world of autism diagnosis, I was terrified.   These doctors, these professionals, made me feel like if I didn’t get my son access to all of these therapies immediately, I would be failing him as a parent.

And failing is something I do not do.

Where was the counseling, the medical guidance, through all of this?  After a diagnosis and a twenty-plus page report, we were sent on our way with a list of websites and books to check out.  That was it.

There was never any discussion of, “This therapy list is simply that.  A list.  A list of all the possible options you might pursue.  It’s a generic list we provide all children diagnosed with autism.  Your son is on the mild end of the spectrum, so some of this is a little extreme for him.”

Why wasn’t that said to me?  Did anyone ever consider the toll it would take on us as parents?  The emotional burden placed on my family because of a therapy overdose?  To me, it is the highest form of lethargy.   No one took the time to really talk to us.  They gave us their diagnosis, derived rather quickly, then sent us packing.

Shame on you, medical community.

But here’s the good news.

I’m over it.  I’m putting my trust in my own gut and inclination to research and study a subject until I am an expert in it.

So when the social worker finally calls me back from the first medical community we met with, I can happily tell her to piss off.

I just worry about the other parents, like me, who are going to be unnecessarily overwhelmed by a diagnosis that, let’s face it, is explained piss-poor by the professionals.  I’ve learned more from my new community of bloggers than I have from any doctor.

To those parents, remember you know your child best.  It may seem like obvious advice, but you start to doubt yourself when a doctor and a diagnosis tell you otherwise.


ep_jhu / Foter / CC BY-NC-ND

 


~Chaos Contemplated (for now)

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4 thoughts on “Overdosing on Therapy (the real cost behind it)

  1. Good for you! 40 hours of anything per week is a big chunk of time, a full time job for an adult, more than teenagers spend at school, I could see how that would be overwhelming for a 3 year old (and his family).

    When we were first getting our head around the concept of “your son might be on the autistic spectrum” (and we still don’t know if he is or not) I had a chat with two friends of mine in the park. One (soon to be mother of 4, ex secondary school teacher and has a psychology degree) thought there was no point in diagnosis. She thought that the world should just accept him as he is because that is how it should be, everyone is different and we should all accommodate each other. Nice idea, but a little idealistic perhaps as not everyone meets up to her standards.

    The other (mother of 2, primary school teacher, sister diagnosed with Aspergers as an adult) said that it was important to get a diagnosis as it was a Signpost, to get him access to the support he needed, to help those around him understand that he’s not just naughty.

    But what both were saying, was not that he needed to change, more that the people around him needed to change.

    That’s what I see as the goal for him. Helping others (including us) understand how we can challenge our assumptions about how things should be so that he fits in better how he is. And also to help him to have strategies to deal with the world around him. Oh, and to help him understand, as he grows, why he feels different, why some things are hard for him that others seem to do without trying, that it’s not his fault, that there is a community of similar people out there if he wants to be part of it.

    (As I write this I’m aware that we have a son whose probably somewhere on the borderlands of ASC, a child who “seems normal” to those who first meet him and that if he had a stronger cluster of ASC traits and different needs then my approach to diagnosis and support would probably be vastly different.)

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    • Thank you so much for sharing your insight. Good stuff!

      I really relate to what both of your friends said to you. I find myself agreeing with both of them. With my son’s diagnosis did come some positives: our school system’s guidance. The label allowed him to get access to a special needs preschool we have, and it has been incredible. So, annoying doctors and all, we at least reaped some benefits.

      Thank you so much for reading. It really does help me wrap my head around this stuff! 🙂

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  2. Good for you! My families life has improved drastically since I hit this point, too. I want do everything I can to help my son succeed. That means giving him time to decompress and just be at home. My son is “nuero-diverse.” If people can’t except his quirks, then they can suck it!

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