At the Start

We were back at the language lab on Thursday. We had a chance to review the evaluation with his speech therapist. She stood firm on the “below first percentile” bit. Before I even got a chance to ask, she answered the only question that really matters to me right now. “I still consider us to be in the diagnostic phase.”

I didn’t know it until I heard it, but that was exactly what I wanted.

Of course I want to know WHY. WHAT IS THE PROBLEM?! More, though, I want to be sure Elliot is given a lot of careful consideration, rather than just run through a battery of tests and pasted with a label. There are general truths, and there is my individual kid. (Who can certainly communicate he hates the shower his father is giving him at the moment.)

I think this is the right time to get down where we are, before my memory of the details gets hazy and my horrendous sense of time starts me down the road of, “Wait, did he start talking before or after prom?”

I looked at his chart at the lab. It says he has the receptive language of a 9-month-old and expressive of a 6-month-old. This isn’t right. I can’t totally deny denial. And I appreciate being called out on it. But he is not that delayed. His therapist did agree that he was much more communicative that day, and that some of his results come from non-compliance with the test. Which were administered by strangers in a strange place. Non-compliance comes up quite a bit in little Elli’s reports. If there are any parents of highly compliant 18-month-old babies out there, please speak up. I would like to meet you and shake your hand. I also might let the air out of your tires. But in a really admiring way.

So, eye contact was much better. I was glad to hear that, as I’d spent a good part of Wednesday staring him down like a snake charmer. Trying to gauge, you know.

I know he knows his name. Whether he will always answer to it or not is different. I guess we will have to measure that with the “Is Your Baby Being a Jerk?” test.

A few outlying details I want to capture:
— Elliot has some minor sensory issues. They all relate to his feet. He’ll eat anything. He’ll stick his hands in anything. He did not, however, like walking on a soft-surface playground that undulated a little bit. Moreso he did not like walking on a highly polished marble floor in a hotel we visited. The biggest reaction, though, was to sand. He could not tolerate on toe touching one grain of sand on the beach.
— He’s lost a few words. Overall his vocabulary is slowly growing, but he stopped saying “woof woof” when he saw a dog. That has reemerged recently. He said “boon” for balloon for at least a week around his birthday, and then stopped saying it. The therapist got him to say “boon” once on Thursday, which caused me to furiously whack Damon on the leg in excitement.
— As far as he can be tested (He’s non-compliant, you know) his hearing is fine. The pediatric ENT wants to measure a few more tones when he’s around two. But what we can know at this point is all coming up fine.
— He uses “look!” compulsively. It was his first word, learned after a week of “Look! Fireworks! Look! Mickey Mouse!” at Disney World. We were so charmed. Little did we know how often we’d get to hear it. He says it 100 times a day. You can hear it in the last video I posted of him. It’s super cute and strange.

Elliot is super cute and strange. Like every other parent of a kid with an “issue,” I don’t want that issue to define him. What I’m writing about makes up such a fractional part of his existence. I’m part of the problem.

And yet, soon I want to write about the most common causes of speech delays and my thoughts on whether any of those things are what we’re facing. Maybe we can start a pool!

I also want to synthesize all the fantastic advice and support that has come in via the link from my friend Katie. She is, as always, using her powers for good. Our good in this case. Her kindness and yours are so appreciated.

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22 responses to this post.

  1. Posted by Ally on April 9, 2011 at 12:57 pm

    Hi, I stumbled on this blog through Katie Granju’s. I am a speech therapist and of course I don’t know your son. Please remember you know your son best!! 18 month olds are still so little and they certainly don’t always test well…it’s just a moment in time and a place from which to set goals for therapy! From what you said he is saying words, playing with his brother and imitating. These are fabulous things. You might also look into a Hanen Program. Good luck and hang in there.

    Reply

  2. Posted by Artemisia on April 9, 2011 at 2:35 pm

    Hi Jaye, I came through Katie Granju’s blog too.

    Speaking from the finish line, I *was* the mother of a highly-compliant 18 month old! But you wouldn’t want to let the air out of my tires, he was compliant for all the wrong reasons, all relating to his disability. He wasn’t so compliant by the time they were testing him at 3, but that was a good sign, that he was connected enough to the world to have opinions and say “hell no” to some strange adult’s agenda.

    It’s fantastic that you are having him tested now – as you probably know, the earlier he gets help, whatEVER the reasons for the delay, the more progress he’s likely to make. I would kill to have had a diagnosis at 18 months. But even starting later, it’s turned out fine, my formerly silent kiddie is now heading to college with no shortage of friends, interests, and things to say.

    Feel free to email if you like. Thinking of you. This part isn’t that much fun for anyone.

    Reply

  3. Posted by Shari on April 9, 2011 at 3:16 pm

    Hi:
    I hopped over from Katie’s blog. We, too, have a son with significant “issues”. One of them being speech and he’s 8 years old. I can relate to all you are talking about. It seems that the “pros” always define a kid by their labels they attach to the child. That gets me every time. Our sons are not what their labels say they are. They are individuals with feelings and emotions.

    You know your son best. All we can do is keep advocating for our children.

    Shari

    Reply

  4. Posted by jennyjen on April 9, 2011 at 3:31 pm

    Hey, I too came across your blog for the first time today. I know that I will be hooked, and have to come back everyday. I will be very curious to see how your journey with your son will play out.
    My son was just a little older then yours when our journey started and I had no idea where we would end up. He was barely 2 and not talking at all, and barely any eye contact. He also was charted below the 1st percentile.
    We hardly use our video camera ( I really need to get better at using it), but we used it a lot on our trip to Disney right after he turned 2. We just watched that dvd the other night, its hard for me to believe that it is the same child that is on that tape, now 4 years later.
    Good Luck!

    Reply

  5. I am here through Katie and glad to be. It’s good to hear about a child getting whatever help he needs so soon…so many parents are not willing to do this.

    Reply

  6. Posted by Kim on April 9, 2011 at 11:18 pm

    I commented yesterday, wishing your speech evaluation report had been more positive. I’m sorry, but I find it very hard to believe he is at a 6 month level in expressive language. If you’d like to see some sample questions from an evaluation I use, just to get a peek at one of the tools out there and what the criteria is for his age, please e-mail. (I think you can see it somehow through my comment registration?) It does sound like he is delayed in that area, but at a 6 month old level???? I am doubting that.

    Reply

  7. Posted by Kay on April 10, 2011 at 2:38 am

    Not sure if you are looking for this kind of reassirance but just wanted to chime in to let you know that my daughter was also evaluated at approximately 18 months for her speech delay and was diagnosed as having expressive language in the 6-9 month range. She had less than half a dozen words at that point, none of which would be recognizable to a stranger She spent approximately 9 months in twice weekly speech therapy and then “graduated.” Now, at three, she talks constantly and her preschool teachers assure us they would not have know she had speech issues if we had not told them. I tell you this not to crow about how quickly and wonderfully her speech therapy went but just to reassure you that despite how hard the 6-9 month comment in her evaluation was to take, in the end it all worked out.

    Reply

  8. Posted by Traci on April 10, 2011 at 11:21 am

    I came over from Katie Granju’s blog as well. I don’t know a lot about kids with this kind of developmental stumbling block (my son had trouble with reading not talking, he was always asking why) but I do work with two little boys, twins, and we have been doing baby sign language with them (they can hear just fine by the way). It is such a nice way to be able to understand them and their needs more and it helps them not get so frustrated in trying to tell you what they want or need. The suggested time to start with sign language is around 6 to 8 months with you seeing results around 8 to 10 months, but that doesn’t mean you can’t start it at a later time. Sign language is considered an official language and I don’t see how it could hurt to give it a try. Not saying that you have to, but just an idea. Good luck. I hope it all works out for the best.

    Reply

    • We’re totally trying baby sign language. Elliot’s developmental teacher taught us a few signs and he’s already picked up two. Well, really, one and a half. But I’m very interested in this. Thanks!

      Reply

  9. Posted by Sara Dassance on April 10, 2011 at 9:03 pm

    How lucky Elliott and Alden are to have you both as parents. I am keeping you and Grandma Jodi in my most positive thoughts. Sara

    Reply

  10. I also have a son who was in speech and physical therapy at 18 mos old. He always had low muscle tone, which still affects him I believe, but he’s 6 years old now and he just got released from speech therapy (woo hoo!). He had tubes in his ears and a partial adnoidectomy when he was 3 years old. He had major fluid buildup in his ears which was part of his speech problems (he could’t hear!).

    I know how scary those first few months are, when you’re trying to figure out what’s up and what’s down. The only advice I can give is to stay on top of the doctors – you know your son, so if you don’t feel right about the treatment either get another opinion or insist on further tests and treatment. If you have a worthwhile doctor they will listen to your concerns.

    Also, this is kind of an odd upside, but my son (a twin) always did and still loves to go to the doctor. I always make it special and he has his own time with mommy. You will be surprised how much he gets used to it and even looks forward to it one day!

    Reply

  11. Posted by Ingrid on April 12, 2011 at 7:13 am

    Hi Jaye, I also found you through Katie’s blog. I’m glad to find someone else at the beginning of the process– we’re only slightly farther along (my daughter is almost 2.5, we had the initial evaluation at 22 months) but I’m also in that “how is this all going to play out” stage of worrying, feeling buoyed by progress, worrying again, etc. Right now we’re dealing with low-tone and the gross motor and articulation challenges that come with it, but I suspect she’ll need speech therapy when they re-evaluate that in a month. Like you, I also feel like these things don’t and CAN’T define my kid who is completely amazing and bold and smart and loving. I try to show her that I believe in her and tell her that effort is like a muscle, the more you use it the stronger it gets.

    The most helpful book I found for general info is Debbie Feit’s “Parent’s Guide to Speech and Language Problems.”

    Thanks for blogging your journey through this for those of us who feel pretty isolated out here.

    Reply

    • Your daughter is clearly in great hands. I wouldn’t wish our problem on anyone, but it is nice to feel less alone.

      I hear/read a lot about low muscle tone. Maybe I need to consult with Dr. Google on this.

      Reply

  12. Posted by Kate on April 20, 2011 at 9:34 pm

    My 21 month old son just had his early intervention evaluation for speech delays today, so I’ve been reading your blog with interest ever since I found the link on Katie’s blog. My son sounds a lot like Elliot — loves to laugh and play, makes good eye contact, etc. but just doesn’t have many words and some that he used to have he no longer uses. Anyway, the therapist said that his expressive language was at the level of an 8 month old, but explained that the reason he tested that way is that he doesn’t imitate sounds or speech, which is something they would expect at 8 months. So even though he has some verbal skills that are beyond 8 months, that’s where he hit the first major stumbling block on their assessment. Of course to see him, you would say that he is clearly delayed with language (not so much in other areas) but has much more speech than an 8 month old, so you have to take that into consideration when you interpret the test results. I’m just wondering if that might be the explanation for why Elliot’s expressive language tested at 6 months.

    Anyway, best of luck with this journey that we’re on. I’ll look forward to reading more!

    Reply

    • Right! The therapist told me the same thing. It’s about initiation and consonant/vowel combinations and babbling/jargoning. Somehow I lost that detail, and it’s a really important one. Thank you.

      Reply

  13. Hi there.

    I have a nephew who was adding more words to his vocabulary and saying mommy dada and more words but suddenly and unxplicably he stopped talking at 2 years old.

    After many doctor visits, many evaluations much heartache for the parents when he was four it was found out it was all gluten related. Gluten caused some sort of reaction (I don’t know the medical term for it) that impeded his speech. He stopped eating gluten and like a miracle started talking within a couple weeks!

    Not sure if this is relevant to your son but thought to share it here 🙂 .

    You are great parents to take care of this issue now and not wait till it’s too late.

    Reply

    • That’s fascinating. I am a big believer that food is medicine.

      My best friend does not eat gluten and she talks a mile a minute. Perhaps I will tell her about this. 🙂

      Reply

  14. […] work up a battle plan, research resources. I asked her if she thought it might be apraxia. “Maybe,” was all she would say. In the meantime, we treated the symptoms without knowing the source. She was right, of course. Even […]

    Reply

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