SLI – Expressive and receptive language disorder: a new road for us.
Speech Language Impairment, expressive and receptive language disorder. Just some of the terms I heard today.
It’s pretty rare that I blog twice in one night, given that sometimes I struggle to write once a week.
Tonight I’ve got a stack of other work to do. Emails to answer, mood boards to quote, items to order.
But I feel sick.
“severe difficulty understanding”…. “well below age level”… “severe receptive and expressive language difficulties”.
These words keep churning over and over and over in my head.
They are talking about MY Sam. My beautiful 5yr old little guy, who is always so eager to please and learn.
When it started….
When Sam was a baby, I noticed signs early on that something wasn’t right. He hated being sung to, read to.
He would cry and get upset if I tried to do any kinds of music or clapping, singing or talking to him too much.
(Yes, it did occur to me that my voice was just really annoying).
The thought that he might be autistic crossed my mind, and I dismissed it.
I remember when he was about 5mths old and my best friend’s mum was holding him up to the bathroom mirror.
All my other babies had LOVED to look at themselves. They were in awe at the person staring back at them, copying them and smiling.
I knew better than to compare, but it was like Sam didn’t see the mirror at all. Or it was too much and he couldn’t quite cope with what it was.
He was a late babbler. A late talker. Early crawler, early walker. He would push trains, trucks and cars but wouldn’t stack things like blocks.
I think I kind of fibbed in my child health check ups. Not really fibbed – he was kind of, sort of doing everything. Just not as much as I thought he should be.
But they’re all different, so I’m sure I’m just being paranoid I would say to the doctor or nurse.
At 2 and a half, I had a speech therapist come to visit Sam. She was great – gave me heaps of tips to encourage his words, going back to basics with sounds.
The term expressive and receptive language disorder wasn’t bantied around once.
I felt confident we were on the right track. But deep down, I also knew that there was more going on.
At 4, I took him to the Child Health Centre for an assessment.
We were told he had Expressive and Receptive Language Disorder (Speech Language Impairment), and referred to ECDP (Early Childhood Development Program). We were lucky to get a place for the last term of his pre-school year.
Expressive and receptive language disorder – flying under the radar
The problem has been is that Sam has developed the most amazing set of coping strategies. It’s both a blessing and a curse, and it’s probably what has made him fly just under the radar for so long.
He is clever, smart and funny. He works things out faster than the older kids when it comes to technology, or anything that doesn’t require interpretation.
You show him the logon for a computer, or something on the xbox, and all of a sudden he’s not only mastered that, he’s reprogrammed it and is developing the next update for Google.
Slight exaggeration, but he is a whiz at stuff like that and was from a very ridiculously early age.
So from the outside, it’s hard to see that there’s any issues.
He has learnt to copy, to watch what others do or say and go along with it.
The thing I find really hard is when people assume that I mean he requires speech therapy to talk properly (which I would have assumed, too).
If only that was it.
Sam’s needs will be ongoing. He won’t “catch up” to his peers. He won’t all of a sudden outgrow this with a bit of extra help.
At the moment, we have to rely on our amazing school to provide his support.
He’ll meet with the Speech-Language Pathologist once a week, and work individually with a teacher aide before school twice a week.
They also visit him in class.
I’ve never felt so guilty and so helpless. I should have persevered with speech therapy when he was 2.
I shouldn’t have dismissed my concerns when he was a baby.
I should have documented stuff that I noticed him doing or not doing.
I should have acted on my instincts. I should have known somehow.
Right now, all I want to do is make it go away for him, to take away the expressive and receptive language disorder. Just so that his bubbly, happy personality doesn’t start to feel the burden of needing extra help to follow instructions, directions, or to provide information and construct sentences.
I don’t want this to crush his spirit.
I have no idea how to parent a child with (invisible) special needs, but I’m about to learn pretty freaking quickly for Sam’s sake.
In the big scheme of things, this isn’t a huge deal. Of course there are far more extreme developmental, mental, emotional and physical needs that families cope with every day.
It’s just that this is new for me, for us. For Sam.
I’m just worried about my little guy.