Mountains of Paperwork

On Friday I spent five and a half hours at an evaluation for my three sons at an ABA clinic. Over the past eight years I have probably attended 30 or more of these.  For those that aren’t familiar with special needs evaluations, I’ll fill you in on the fun way we get our kids the services they need.  Your children have to be with you, and you hardly ever get the paperwork before the appointment.  Anytime your child needs services for their exceptionalities for school or private therapy an evaluation is necessary.  This is not just a sheet of paper, it’s usually 800 pieces of papers that you have to fill out to determine your child’s deficits.

Prepare for the Evaluation

See in the beginning I thought, it was just like an hour appointment, turns out to be a soul sucking event that seems never ending.  When the boys were first getting diagnosed with Autism I was so naïve and I would just bring them with me, no snacks, no toys, just me and my three kids.  They almost always seem to be in a small room that barely fits the four of us plus the evaluator, and the temperature is right at about hell level.

My lack of preparedness and the Agency’s lack telling me what an evaluation entails would lead to absolute chaos.  One evaluation we were at, the workers keep popping their heads in to see why it was so noisy. Then they would smile and leave.  How can a parent focus when a child on the spectrum is -A) In a new environment B) does not have snacks C) in a tiny space with his other two hyperactive brothers D) you can’t prime them because you don’t know what’s going on E) it’s hotter than the sun- it is almost as if they are torturing you on purpose?  Like a test to see if your children really need services or if you are trying to work the system.

Self Esteem

Over the years I have learned to prepare the boys and my self for these appointments and no matter how prepared I am someone still melts down. It’s an extremely stressful event.  Think about the actual reason that you are there.  It is to talk about all of your child’s deficits.  Listing off every-single-damn-thing they can not do like their peers.

This is not how I think of my children, I like to focus on what they can do, not can’t do.  To sit in a room for hours on end and discuss what is wrong with my beautiful, wild, funny, smelly little boys is emotionally taxing.  To top it off, they are sitting there listening to you talk about what they can’t do for hours!  How does this raise their self-esteem?

Why aren’t they allowed to be in another room so you can talk openly about what needs to be worked on?  I regularly have talks with my boys about why they are in therapy and why it’s important, however I don’t start off with- “It’s because all these things are wrong with you and without therapy you are worthless!”  Imagine how that feels as a child to sit there and hear all of the things you are not capable of.  I’m an adult with very thick skin and I couldn’t handle it.

Change

This process needs to change.  I understand the need for an evaluator to see the child and see for themselves the issues, however it should be that the child is not present for the listing of abilities.  Even when a child is nonverbal they can tell that you are talking about them.  My kids can hear even with headphones on and will now correct me if I mix up one of them.  I worry about their internal vision of themselves.  I myself feel like a failure by the end of the appointment, I can only imagine what my children feel. Do any other parents feel this way?