Monday, July 2, 2012

The Glory of Words

When M was a baby, once I had realized and accepted that I was parenting a child with special needs, I joined an online support group for parents like me raising kids like M.  The group became a lifeline that has carried me through some of my darkest times.

Recently another parent posted about her need for support in coping with her daughter's significant speech delays.  Her worry and sadness struck me. During the past seven years I have seen posts such as these many times. I too had shared my fear and worry about M's speech with the group.

For years, M was silent.

At his one year check up, the pediatrician went through the obligatory list of questions regarding infant development.

"Does he have any words?" the pediatrician asked.
"Not really." I responded.
He pressed on. "Does he say, 'mama?'"
"No."  I sighed.  "But he will try to make an "mm" sound sometimes."

When M began preschool at the age of three, he had but a handful of words and signs.  He was still unable to verbally put two words together, although he could create short 2-3 word sentences with his signs.  Most of M's words were approximations, only discernable when heard within the context of what he wanted. For example, "ba" could mean "ball" or "bottle".  You had to see what M was gesturing to in order to know what he wanted.

M was delayed in all areas and this was by far the hardest one for me to swallow.  I wanted to hear my son's voice.  I wanted to know what he wanted, what he was feeling, what hurt him if he was sick, what scared him, what made him happy. The silence ached within me.

It had been so different with Miss J. When she was an infant, she spoke her first word at seven months old.  By one year she was speaking in sentences.  By the age of two she was reciting poems and children's prayers in two languages.  When most toddlers were naming colors and counting, Miss J was reciting the correct names of all the bones in the human body.

I had Miss J...precocious and witty and so very chatty.  And I had M....a little boy whom I spent many hours trying to coax a single word from his lips.

In M's three year old preschool, he received Speech Therapy in a group of ten.  Not one single minute was given to him for individual or even small group therapy.  This contradicted everything I had been told and had researched about children with profound speech delays. I went toe to toe with the school and plead my case that M should receive individual therapy; that being serviced in a group of ten was not in M's best interest.

I was told that three years old was far too young to receive individual therapy and reap any benefit.
I was told that in this school, the only way they did it was in a group.
I was told that if M received individual time that it would "throw off the schedule" since everyone had the same minutes/group.

I was told no.

When M was four and it was time for his IEP (Individualized Education Plan) meeting, I made the same argument.  This time I did not back down.  This time I came armed with literature and statements from his private therapists and statistics.  This time I insisted that M receive some individual therapy minutes.

He was granted 15 minutes per week. Not much, but something to start with.

The next day I was picking M up from school and the Speech Therapist approached me.  She looked me straight in the eye and said,

"You need to understand that your son will never have true speach.  He won't speak in sentences.  He will not have speech that is intelligible outside the family.  His fine motor skills and vision are so poor that I don't think he could even use an augmentative communication device or type on a computer. You need to accept this."

She spit the words at me.  I might have gotten my 15 minutes of speech for M, but was clear in telling me what a waste of her time she thought that was.  It was clear that little was to come from M's individual 15 minutes since the therapist had already made up her mind about M.

I was angry.

I was afraid she was right...what if everything she said was true?  Was M never going to be able to communicate?  Was all the private speech therapy a waste of money?  Had all those hours of practice at home been a waste of time?

I despaired.
I cried.

And then I kept on.  And we sold our home and moved M out of that school and another one that offered M all the tools and help he needed to succeed.  A school that set high goals and worked with him to reach them.

M will be turning eight soon.  His speech is still quite delayed, but he speaks much more than many people thought he might.  He does speak in sentences.  Most often, strangers can understand him.  His vocabulary is extensive.  He is learning to read.  He does not use any sort of communication device and no longer uses sign.  He is always improving on his ability to tell me what he wants, what he is feeling, what he is thinking.  He is funny and clever.

A few days ago, I we were in the car.  Miss J and M were arguing about something in the back seat and, in frustration, Miss J smacked M. A very upset M cried out,  "Mama!  J hit me!  Call the police! Take me to the hospital!"

And while I should have made an attempt to stop my children's fighting, I could not help but revel in the glory of those words I thought may never come.

1 comment:

  1. thank you friend, this post is so beautiful and inspiring. GG