Never Normal

It was time for our monthly meeting at Michael’s preschool.   To keep tabs on Michael’s progress, his school scheduled family meetings once a month to update the parents on the progress of their special needs child.  It was at these meetings that they would make suggestions about what could be done at home, if there were any suggestions for additions or deletions to the program at school.  We’d had several last school year after Michael started the program, culminating with the Planning and Placement Team meeting, where all of the teachers, therapists and anyone else delivering services to my son would come in with suggestions for his program the next year.  It was at that meeting we discovered that our son would be going to summer school at age three, to make sure his progress would not stall with empty weeks during the summer.

“So it is official then,” I said with a heavy heart to the team assembled today.  “After your suggestion that we should see a neurologist, we booked Michael an appointment with a doctor in New Haven.  It took him about forty minutes to diagnose him as PDD-NOS.”  No need for an explanation of the acronym at this table; they lived every day knowing what all the different words on the spectrum meant.

My husband looked around the table.  “I know you’re not surprised.”

The speech therapist chimed in.  “No, we’re not.  We see it so much, we knew that he was definitely on the spectrum.  But this is a good thing,” she said encouragingly.  “The diagnosis is the first step to addressing his needs.”

The school psychologist nodded.  “So we’ll need the paperwork to put in his file,” she said.  “Can I take it now and get a copy made?”

I hesitated.  “I need you to answer me this question honestly.  Do we need to put the diagnosis in his records?  I mean, your program addresses his needs, not his diagnosis.  So his services won’t change based on putting the label on him.  I just worry so much about the labeling, and what that will do to him later.”

Michael’s classroom teacher spoke up.  “You’re right, his program won’t change.  However, we can be freer to add things to his program if he diagnosis is in his file.  It’s hard sometimes to get services when the budget gets tight; kids who don’t have a diagnosis on file will be the first to be removed from say, a speech therapist’s caseload, if we can’t point to a piece of paper and say this is why this child needs this.”

I nodded.

The speech therapist continued.  “And you’ll find as he gets older, especially when he leaves this preschool and goes into the regular student population, the diagnosis is even more necessary to get your child the services he needs.  We get some other funding for our program here, so we can offer more services to children who may or may not have a diagnosis, but once you get into the regular school, it is much harder when they don’t have a documented need.”

I looked at R.  “Well, I guess then that we should add it into his files,” I said slowly.  He nodded in agreement.

“Plus this will help you get coverage for outside services.  We definitely think that you should consider adding physical therapy and occupational therapy outside of school; Michael’s needs are so great that he needs more than we are able to provide.  Plus there are so many things, especially in the physical therapy, that we don’t do in a school setting that he needs to work on.”

I sighed.  How could there be so much my child needed that I didn’t know he needed?  I felt stupid, lazy, a bad parent for not recognizing it all before.  Michael was nearly four years old and already so far behind his peers.  How would he ever catch up?  “How long do you think,” I began, my voice catching.  “That if we add all of these outside things in, plus with the full day program you’re giving him, will it take for him to catch up to his peers?”

The speech therapist looked at me, very serious.  “I’m so sorry,” she said firmly.  “But your son will never catch up to his peers.  He’ll never be normal.  His brain just isn’t wired the same as theirs.  It’s not a matter of catching up.  The best we can do for your son is to get him to the point where he can maybe live independently.  But you need to prepare yourself.  He will never be normal.”

I wanted to run from the room, but I couldn’t.  This wasn’t a game, this wasn’t an argument. This was my son’s life, and it was time I grew up and started figuring out whatever it took to make the statement I’d just heard patently untrue.

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