jaysaint Getting it all down on paper…

A few weeks ago I reported that Elliot broke new and important ground.

“Mama” rode in on a wave of words. We’ve left behind parsing every syllable: “Was that ‘mmm’ for moo? I think he’s trying to say moo! We just drove past some cows. Seriously, I think he’s trying to say ‘Moo’!.” Now it’s more like: “Did I tell you he’s saying hippo? Well, hubbo anyway. He started a few days ago. Show him a Sandra Boynton book and he’ll do it. Super cute.”

Less, exciting, but still a relief.

I suppose I expected that when I told his therapist about this change she would proclaim him “normal.” I even fretted a little bit that he wouldn’t continue to qualify for services.

You parents who have been there may be thinking, “Oh dude, you are so kidding yourself.” Or maybe just, “I remember that.”

It’s a new phase, not for Elliot but for me. Denial and unrealistic expectations. I was hoping, perhaps all along, to be rewarded for my ready acceptance and can-do attitude by a complete reprieve within just months of our first diagnostic appointment.

I burbled out all my news about Elliot’s progress. After just a moment of happy response his therapist moved right into how quickly we could get him up to two appointments a week. Have you ever blurted out, “I think we should get married!” right as your beloved said, “We need to spend some time apart.” I have not (Thank you Baby Jesus.) but that’s about how far apart we were. I was disoriented, and it took a few minutes for my brain to catch up with my mouth.

I understand now (or rather I admit the possibility to myself) that Elliot isn’t going to progess in a linear way until he rings a bell and gets his pass to Normal Talker Town. Or maybe he will. I guess I can continue to admit that possibility too. I might also suffer some reversals, mis-perceive the process, throw out my gratitude for all our excellent help and instead stamp my feet about how we never wanted it in the first place

Good session with the speech therapist today. We spent a little time on the “Why” of it all. The bad news is that she can’t tell me instantly and comprehensively what the problem is, and then fix it five minutes later. Your tax dollars NOT at work, people.

The good news is that she didn’t tell me after the first few session that she was pretty sure he was autistic. She told me that today, and that as she’s gotten to know him her feeling has changed. Autism isn’t the end of the world, and of course we would deal. But that’s a loaded word, and I’m grateful she didn’t make me deal with it at the same time I was digesting the fact that my baby needs intervention on the scale of 3x a week.

He’s getting great help. I love his speech therapist, in particular. Whatever the problem is, he’s making progress. But eventually we’re going to have to decide what the cause of the delay is, as his ongoing treatment will need to be more customized as he gets older.

While Elliot’s therapist is only available to me a few hours a week, Dr. Google is on call 24/7. I’ve been doing a lot of research. I’ve also gotten lots of great comments and notes from wise mothers and therapists (thank you so, so much!) with valuable information.

The most common causes of speech delays (combined info from multiple sources) and my take on whether that’s what we’re living with.

Mental Retardation/Intellectual Disability

Marked by delays in language, auditory comprehension and gestures. He definitely has language delays. He tested poorly on comprehension, but I think there was a lot of “won’t” in that “can’t.” It’s my feeling that he understands us most of the time, inclusive of times when I’m talking about something conceptual or referring to something not visible. He’s a gesturing fool. If this is the reason, it’s a mild case. I think it’s unlikely.

Hearing Loss

He passed his hearing tests as well as a baby his age can. They won’t be able to test him in more detail for about a year. We’ve already got our apointment set with the pediatric ENT for that time. If he has hearing loss, it’s mild. He can clearly hear. Theoretically possible there’s a distortion issue, but I doubt it.

Maturation Delay

This is when the central neurologic process required to produce speech matures late. Most common in boys, and often runs in families. We’ve got no family history of this, but last time I checked he IS a boy. Certainly possible. This is my favorite option.

Expressive Language Disorder/Apraxia

I think these are two different things, but I haven’t been able to tease them apart. ELD seems so widely defined that I feel like apraxia can fit in there. Someone smarter than I am will have to explain it to me. The hallmark here is that children have normal intelligence and hearing, but a brain disfunction makes it difficult to translate ideas into speech. When I asked about it today, his therapist said apraxia is definitely a possibility. He does not, however, show a physical groping for words with his mouth that is apparently common with apraxia. That’s one strike against, but not enough to put this in the unlikely camp. These kids are more likely to deal with things like dyslexia when they’re older. Entirely possible.

Receptive Aphasia/Auditory Processing Disorder

This a receptive (no kidding) language issue. The desriptions I’ve read of aphasia sound too severe to fit. In general, he understands us. I don’t think this is it.

Autism

The many variants and severities of autism would require me to write a book. I know autism can have a late onset, and it’s possible that we’ll see more as he grows that takes us back to this path. But if he’s autistic, it’s not profound. (I have heard about severe, profound late-onset autism, but I’m going to call that a unicorn for now and leave it alone.) He doesn’t display unusually repetitive behaviors or express extreme focus on things or actions. He’s very attached, demonstrates eye contact, responds to his name, etc. He is slow to warm up with strangers, which is why he set off alarm bells by refusing to demonstrate those things in his initial evaluations. So, he’s still in the common diagnosis window (up to 36 months) but I don’t think this is it.

I’ve left off my list other common causes of speech delays that I know are not possible. Those include cerebral palsy, selective mutism, psychosocial deprivation, bilingualism, structural problems and prematurity.

I also read about something called Einstein Syndrome. Aside from the fact that it seems to have been made up by some dude with a book to sell, I think this is an excellent option for us to consider. Or at least for me to contemplate along with my fantasies about finding out that I am Oprah Winfrey’s lost half sister.

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.