Thursday 13 November 2008

Severe

Everyone things that their child is a genius. Smart, at the very least.

So when I brought Sacha to be formally assessed by an SLP, I was expecting to hear things like "His non-verbal communication is making up for his lack of words" or "He's just a little behind. It's nothing to worry about."

I was not expecting to read a diagnosis of:

  • Severely Delayed Expressive Language

  • Severe Phonological Delay


During the assessment, Sacha scored an age-appropriate standard score for receptive language. His expressive language, however, scored him in the second percentile. As in 2nd. As in 98% of children his age scored higher than him. His expressive language is the equivalent to that of a child aged 1 year 3 months. Sacha's chronological age is 2 years 3 months.

It's difficult, to say the least. To us, Sacha is a very smart boy. Seeing the words "severely delayed" when relating to our son is heart wrenching. I am asking myself how I could let this happen. Tony wants to know why Sacha is not vocalizing many phonemes. We read to him all the time. We speak to him all the time. He communicates with us in his round-about way. He has a fantastic memory, especially for details. He loves telling stories about things he sees, things he hears, games he plays, or crafts he makes. The only catch is that these stories are largely gestural and minimally vocal.

He can't say oo, ay, aye (long i), eh, oh, or make any sounds that end in a consonant, or say his own name, his brother's name, or the simplest words, such as eat or no, that he makes us guess in our eternal game of charades.

So we now play the waiting game for a block of speech therapy sessions to open up, always wondering what we could have done differently.

13 comments:

  1. Whenever I read about speech therapists and what not in regards to little kids, I think "What would they have said about ME at that age?". (Talia and I voted for a diagnosis of autistic for my toddler self. Heh.)
    Or even about Jay, who didn't really talk until he was 3?....
    I wonder about the possibility of overdiagnosing kids with problems that may not actually exist.
    I also wonder if mine and Jay's kids will perhaps not talk until they are 5!! Or perhaps the exact opposite, they will never shut up....

    ReplyDelete
  2. A friend of mine had a two-and-a-half year old who never talked. He didn't even make a sound; he was completely mute (except for crying, of course).
    A speech therapist gave a possible diagnosis of autism. 9 months later, and he's speaking full sentences. No problem now, just prattles on endlessly like any toddler.

    ReplyDelete
  3. Sacha is an extremely smart boy. And when he grows up, I have no doubt you'll have the hardest time shutting him up. I love you.

    ReplyDelete
  4. Stephanie brings up a good point. Sacha knows how to communicate what he wants, right? Then perhaps you shouldn't worry so much about his development. I mean kids really do develop at their own pace.
    I knew a family (4 kids) that had their own language. They quite literally talked in all vowels. I A I(short) U-E-A stood for My name is Louisa. It was like the first one started it and passed it on to the others. They are all grown up now and totally normal!
    On the other hand, I don't think speech therapy ever hurt anyone! Just don't stress about it! :)

    ReplyDelete
  5. Oh honey, no. Now is not the time to ask what you could have done differently; it's the time to look forward to what you CAN do and WILL do to help him bridge the gap. That baby is barely 2 for goodness sakes - He will be fine, you will be fine, it will ALL be fine. Promise.

    Hang in there.

    ReplyDelete
  6. Ditto everyone!

    Thinking of you.

    ReplyDelete
  7. Sarah, I have never heard Sacha in person, so I'm not an expert here, but do keep in mind that bilingual children quite commonly speak later, even though they understand everything they hear. This doesn't happen to everyone, but it happens often enough that we forewarned our pediatrician so she wouldn't freak out on us (thus freaking us out).

    I hope everything is ok.

    ReplyDelete
  8. Wow Sara, I can imagine that all this is hard on you guys. You are great parents, we've seen it and I think Sacha is a brilliant kid, we've seen that too. Being in the field and having seen this before, I think that you will all pull through!

    Giving you strength.....

    ReplyDelete
  9. I was going to also say that perhaps bilingual children speak a little later but it was mentioned above. That is not a bad thing though, because it will be so good for him in the long run.
    Don't beat yourselves up about it, you two are such great parents and everyone knows you always have done what's best for your boys. Everything will turn out.
    I have also thought about Evan's speech and been concerned, because he doesn't say any words so I kind-of get where you're coming from. He has never said mama or dada (intentionally at least) or anything. He only speaks animal (meow, woof, quack, hoo hoo [owl], etc) and he's 1 year 3 mos. I think we pay too much attention to numbers on a scale. I'm going to keep doing what I'm doing and you just keep doing what you're doing, you are great parents! :)

    ReplyDelete
  10. You can drive yourself crazy thinking about what it is you did, but I highly doubt that anything you've done has caused him to be a late speaker. Like you say, you read to him, talk to him, play with him - you've done everything right on that front. I think you'll just have to wait and see what happens - even though that's extremely hard to do. He's still so young - I'm sure he'll catch up. And as I told you by e-mail a few days ago - this is not a reflection of intelligence. He IS a smart cookie. :)

    ReplyDelete
  11. I have never commented on a blog before but I just cannot help myself. I want to tell you that you are not alone and I know EXACTLY what you are feeling. It is so very hard to hear those words about your precious child so near to your heart. Especially when you know that he is a smart little guy. I have an almost 3 year old who can verbalize at a 1 year and 8 month level. He understands everything we say to him and yet has not quite made the connection to speak himself. My son Nick has been in speech therapy for one year now and it has helped but it is hard to see the progress because it is very slow and frustrating. I just wanted you to know that there are others out there where it is just a verbal delay and could be so much worse, and yet this is all still so new and sometimes scary. Please if you ever would like someone to talk to, even if I don't know the right thing to say or do, it may be nice to know another person going through the same thing.

    ReplyDelete
  12. Hi Sarah,
    I'm not sure that my response will be helpful or calming but I really wanted to comment on this as well, from a personal point of view. I was born over two months prematurely and my mother had several complications while she was pregnant with me. When I was born at just over 4 lbs and physically quite underdeveloped, all of the experts said that I would always be "below average". Below average development, below average intelligence, below average size. When I was an infant, my parents had a physical therapist come to work with my limbs because I would not move. I did not walk until I was two years old, and I did not speak until I was three years old. But once I started walking and talking, my dad told me that he couldn't get me to slow down or to shut-up :o) And NOW, I like to think that I'm "above average". You know... being almost 6 feet tall, completing my pharmacy degree... and so on. The point I'm trying to make is that upon first observation, many professionals will generalize. I've never met Sacha, but I've read about him since he was born, I've seen the pictures and videos you've posted, and I KNOW that you and Tony are amazing parents. Sacha is obviously bright, and he will come around to speak on his own time. And I'm sure that when he does, you will be surprised by all the great things he will have to say.
    Hope all is well,
    Elena

    ReplyDelete
  13. [...] Sacha-ism for your Tuesday morning September 17, 2009 Remember when Sacha was severely delayed in his [...]

    ReplyDelete

Thoughts? Comments? Questions?