Tuesday, September 26, 2006

The Numbers

Eight months after our initial interview, we finally went in today for Bub’s speech therapy reassessment. Since his first appointment, we’ve been through a group class for parents that taught strategies for speech promotion, and this meeting was meant to serve as the gateway to actual one-on-one therapy for Bub. If his sessions begin less than a year after my original phone call, I guess we can count ourselves lucky.

At our first appointment, back in February, I was very aware of my desire for our family to put our best foot forward. The Pie was still breastfeeding, so all four of us went in together, and I nursed while Bub interacted with the therapist, shouting "Pop!" when she blew bubbles at him and displaying no comprehension whatsoever of her instructions for him to "Give bubbles to mama!" A student sat in on our session, jotting down notes in her three-ring notebook, and I kept glancing at our reflection in the two-way mirrors at the back of the room, looking at my family through her eyes and appreciating how charming we seemed. Bub was jumping up and down in delight at the bubbles, and the Pie was at her most flirtatious, cooing eagerly at the adoring masses. For my part, I had done my best to impress the professionals with my attentive parenting, even going so far as to prepare several pages of typewritten notes listing Bub’s vocabulary (all 113 words of it) and his characteristic speech patterns. I could see the therapists exchanging glances, almost hear them thinking "What a nice family!"

Then it was time to leave and I realized I had failed to bring juice or crackers to lure Bub back to the car. And as hubby picked up the now screaming, flailing Bub, I realized that we were leaving a trail through the carpeted lobby, a trail of corn-like bits and pieces that were emerging from Bub’s diaper as he struggled to escape my husband’s vice-like grip. And then I abandoned the baby in the lobby to help pin down the Bub while hubby changed the diaper that had exploded up his back and down both his legs and onto my husband’s coat. And then we retrieved the sobbing baby, grabbed a business card, and escaped, just as the long-suffering janitor arrived to clean the carpet. Finally, we hauled our crying baby and our completely frantic son out to the car as several pretty undergraduates looked on in horror, visibly resolving never to have children of their own.

So I was hoping today’s appointment would go better.

"How have things been going?" Becky asked when we arrived.

"We’ve seen enormous improvements," I replied, "though I don’t know how his progress relates to his age group – whether he is catching up or keeping pace or falling behind."

That is what I’ve been telling myself, and others, for months now, whenever I’ve been asked about Bub’s progress. And I think I even thought I believed it, that I was prepared for anything. But when we sat down to actually score his questionnaire, I received the first shock: the numbers from his last visit. We had been told that he was "below average" (um, yeah – that’s why I brought him in to begin with) and that his receptive language was behind his expressive language (an unusual pattern - usually children understand much more than they can say). Tactfully, the therapist had failed to mention the exact numbers. There it was in black and white: "%ile: Expressive: 23, Receptive: 5." While I was still reeling from that news, she calculated the results of today’s test: in receptive language he’s up to the 18th percentile (a huge improvement, and a relief since it was his low receptive-language score that flagged him for autism assessment), but his expressive language score has dropped back to the 13th percentile.

The therapist became suddenly very urgently optimistic, putting great emphasis on the positives: the two numbers are closer together than they were last February, creating a more "typical" profile. The improvement in receptive language shows that he’s still learning. His therapy sessions will focus on boosting his expressive language score, getting him to use language more functionally.

But all that hasn’t stopped the tape-recorder in my head that keeps saying, "But he’s smart! He can count to 39!"

I’ve gotten used to referring to Bub as "speech-delayed." It’s a factual description, and nicely optimistic as well, as if his speech were wandering around Heathrow airport waiting for a connecting flight, as if there were a voice on the loudspeaker saying, "The arrival of your son’s speech has been unavoidably delayed. Please remain seated and it will be here shortly."

I know that the numbers do not define who Bub is, that he’s still the intense, quirky, gentle, joyous boy he was this morning.

So why do I feel like someone just punched me in the gut and I need to go to bed for a week?

51 comments:

Anonymous said...

My nephew was also speech delayed. He finally started to speak well at about age four. You would never know it now and he is a very bright child.

You're doing everything right. You're a good mom (snacks or not).

Anonymous said...

Woops? Spell much? (GAK!)

Terri B. said...

What a wonderful picture of Bub!

I enjoyed your description of speech delay at the airport. I'm a huge fan of British humor and your words started a magnificent little "video" running through my head that would rival Monty Python!

T. said...

Bub is beautiful!

Secondly, I know first hand what it to raise a child with a "speech delay." My youngest had some neurological issues and was unable to speak. At all. On top of that, he couldn't move any muscle in his face or his tongue. So I couldn't even tell when he was mad.

We spent a lot of time with speech therapists, right up till he died. He had no expressive language. 0 percentile and his receptive language hovered around 9 percentile when he was tested a month before his passing.

And I too, would say, NO. He gets it. He understands more than that. He just didn't do well at that particular office. He didn't test well.

In the end, it didn't matter. He and I developed mommy ESP and some how it worked. His brother and sisters could read him like a book and the kids at school got used to his quiet ways. He was the cool kid with the shades.

I understand the frustration you must feel. I wanted so desperately to hear my boy talk, to know what was going on in his brain. To hear him tell me he loved me. To make sure he wouldn't be left behind in school or society.

Just love Bub. And keep practising. Because any improvement is wonderful!

bubandpie said...

The fist around my heart is starting to unclench a little, with your words. Thanks, guys.

Minnehaha Mama said...

I felt nervous for you just reading that.

But those numbers don't seem that awful, especially for a little boy. I can already see how much faster my girl is aquiring language compared to her brother. And like you said, he can count to 39! I was going to comment yesterday how advanced that is.

Blog Antagonist said...

First, he is a gorgeous kid. Second, remember that his speech delays have very little to do with intelligence. In fact, many children who are cognitively very advanced, experience delays in other areas. There is a strong link between above average intelligence and learning disabilities and developmental delays.

Diminutive One did not speak until he was 3 years old, though he had a very extensive "language" of hand signals, gestures and odd guttural pseudo-words. Hard to describe but he would say things like gnnnnsh, instead of juice. Or khnnnn khnnnn for choo-choo. I can't really explain it well phonetically. It was very strange. He never formed even rudimentary sentences.

Obviously, there was some concern.

One day, at his big brother's birthday party, he opened his mouth and said, quite clearly..."MMMMM. I want summa dat." I burst into tears on the spot, I was so shocked and relieved. From there on, he rapidly made up for lost time.

He still has a couple of speech quirks. But they fall within the parameters of age appropriate articulation.

I don't know if that helps you at all. But it *will* arrive shortly.

Pieces said...

He has to be the cutest thing I've laid eyes on in quite awhile. Listen to the positives. Repeat them over and over in your mind. He is making progress and you are a fabulous mom!

Em said...

I understand completely... as you know I'm on this journey myself and its ups and downs are almost more than one can bear at times. It is scary and overwhelming and sad.

It does sound like Bub is making good progress and the fact that he can count to 39 blows me away. I'm sure everything will click into place in time... but that doesn't make the journey any easier. My thoughts are with you.

Em

PS Georgia's receptive language trails significantly behind her expressive...

owlhaven said...

Sorry, that's tough...I am just beginning to start a teeny bit to wonder about the academic ability of one of my younger ones, compared to most of my other children. Several of mine are gifted. This one may be 'just' average...I don't know. And I can see some strengths that this child has...so I don't know... But the little niggling concerns are tough....

Hugs

Mary

Mouse said...

B&P--The similarities between our sons continue. I haven't had my son tested--I think he's below average but close enough to average that doctors and other professionals don't think it's warranted (but I have no numbers for that)--but I've had enough experiences that create the "punched in the gut" feeling. And I've got that tape recording too; for me it's remembering his original daycare provider calling him a savant (she spoke French)--she recognized that my son was special, and she's worked with many, many kids.

Blog Antagonist--"There is a strong link between above average intelligence and learning disabilities and developmental delays." That's something I find interesting and would like to read about this. Any suggestions of where to start?

Veronica Mitchell said...

It sounds like you were proud of his progress until you saw the numbers. So forget the numbers. He has still made the same progress, and you have still accomplished just as much.

What a beautiful little boy. Of course you are proud and fearful and hopeful and anxious all at once. I hope your heart settles into the good stuff, and the bad stuff drifts away.

metro mama said...

I don't have any personal experience or knowledge in this area to share, but I do know, with a wonderful mom like you behind him, he'll go far.

Hang in there. Hugs.

Julie

Anonymous said...

Oh, my heart clenched at the description of your FIRST visit..yep yep yep.

Don't worry about your wee man.....he sounds amazing and wonderful and is just his own little person.

We have had our pre school teacher..also a 'Becky' suggest that we test Adam for ADD.

Caity doesn't speak in a language most people understand....

Isn't it great when the pressures of the outside world crush are little bubble of love and family?

marian said...

Hi. I'm a new B & P reader. I have 4 children, one of whom has developmental delays,h.f. autism, learning disabilities... and little points of precocity sprinkled here and there. He's now nearly 10, it's been a long road, and I'll spare you the details of what we're going through now. But know that this simple advice is fresh from much experience: take one day at a time. So often the unspoken "what ifs" and our mind's vague projections of any length into the future are what can eat at us the most. TODAY is the only day you can love him, celebrate him, and do everything you can to nurture him in his abailities so that tomorrow is the best it possibly can be! So give your all today. Whatever his "numbers", he is precious, and there are full and beautiful possibilities for his life.

Kristen said...

Man, I have such mixed feelings about the numbers. I'm glad they're there as a milestone and a starting point for understanding extreme cases, but for some of us they create a lot of stress and worry, ultimately for nothing. You're doing all the right things, whether Bub is truly "delayed" or not. We thought Quinn was delayed for quite a while, but now we just laugh through tears of pain and deafness when we remember those days, because the kid never stops talking now. Bub will get it in his time. He's making progress, and he will continue to. His intensity reminds me of Bryce, who also had some "delays" (more fine motor, but not really speech), and that kid does things when and only when HE decides to do them. All the therapy in the world didn't get him to eat solid food. He just made up his mind that he was ready for it one day - months after it was considered "normal"...

Julie Pippert said...

Hey you are clenched because who wants to think there is something wrong with her child that might not be fixed, or easily fixed. We all know life presents challenges and collateral damage, so to know your child starts with a challenge? Anxiety inducing. Facing the exact numerical assessment of your child? Lung squeezing.

From one of my friends and authors (the autism book one, on my blog currently) I learned a lot about tests and results. And still more from two friends raising super-preemies with developmental delays.

Did they talk at all to you about one skill falling back while another advances?

How well does Bub know the testers? Two visits, a year apart? Familiarity can affect the results.

Anyway, the key here is you are addressing it. And he is improving.

Is he happy? Does he have fun? Giggle, smile, find enjoyment?

The rest will work out. One day at a time. Hang in there.

crazymumma said...

There are so many speech delayed kids I have met. And now, well, they are up to speed. You are doing so much that is right.
After you haul yourself out of bed, get him counting up to 50. maybe he just has so many #'s in his head?

By the way, he is beautiful.....

Aliki2006 said...

Some kids just march to a different drummer--the problem with numbers,I think, is that when some kids fall outside the "norm"--(our society's penchant for measuring everything with scores is a little alarming) we rush to feel guilt/worry/fear--we're told there's something "wrong" when, in fact, the opposite is usually true.

By the way, Liam has "sensory issues" and I've fought the labels with him--yes, he falls "outside the norm" as far as some of his sensory behaviors go (especially with respect to food and smells), but so do a lot of us, too. And of course Tessa has always been measured by numbers--ugh.

He's gorgeous--he's probably just sorting out what to do with language at this point.

Momish said...

I too am a new B&P reader. Your post brought tears to my eyes. You're son is beautiful and counting to 39 is pretty impressive in my book. When I studied psychology in college, every "test" that was outlined in every textbook came with huge disclaimers that those tests were just guides. Try not to get hooked on the numbers. Your son is unique and no structured tests could possible capture that, least of all predict his potential. So much depends on the environment and conditions. Sounds to me like your son has everything going his way with you as his mom.

Jennifer said...

Oh, you feel (felt, I hope) like someone punched you in the gut because you love your son with all of your heart and you know how amazingly wonderful and perfect he is.

Keep in mind - numbers do NOT tell a complete story and numbers do NOT define a person. In the end, it's just a number.

All of that said, my daughter went through speech therapy and I could not believe the progress she made in a very short time. Even casual friends commented. Keep us posted on how it goes for that ADORABLE Bub.

Red Rollerskate said...

I don't have much experience with verbal delays, other than my own son was practically wordless at 23 months and talking up a storm at 25 months... But I just wanted to say that I love your writing! I shall be back...
Andrea

nonlineargirl said...

All parents want their children to be advanced in all areas - it is natural. When we worry that something is not what we'd hope, we are afraid for the child and for ourselves (our hopes for our child are about them and us, of course). From your writing I know how much you love and take care of both of your children. Here's hoping that the speech therapy helps Bub advance, along with your continuing love and support.

Mommy off the Record said...

Wasn't it Einstein who didn't talk until he was three? I agree with the others - focus on the positive and keep on loving your little guy.

Sending good thoughts to you and Bub for lots of new words in the coming months.

Mommy off the Record said...

p.s. Coincidentally, I just clicked over to another blogger I read who's daughter was born the SAME day that my Little Guy was born. She was posting about how many words her daughter can say (25). Little Guy has 5 so far. Yikes.

Mary-LUE said...

There's nothing I can add to this conversation. Just wanted to let you know I read this post and agree with the chatter here. You are a great mom. Bub is a great kid and beautiful, but I think I've commented on those gorgeous eyes before. I don't know what the future holds but I think you and your husband are going to handle it all with grace and wisdom.

lynsalyns said...

A lovely boy, from a lovely family. A friend of mine experienced speech delay with her first boy and he is verbal as can be now. It is clear Bub is an intelligent person. Take a breath and try to go along for the ride.

Terrible advice, I know. You have friends here, I hope that helps you rest a little easier.

bubandpie said...

You guys ROCK.

I know sometimes it seems in situations like these that words are inadequate, but they really do help (which is why I posted about this - I knew you guys would help patch up my heart).

I'm feeling more optimistic today, like the elephant got up off my chest and the air is starting to come back into my lungs.

Thanks.

cinnamon gurl said...

Bub's so adorable! This must be really challenging for you as a parent.My little one is too little for me to have anything valuable to contriubte (we're still focused on his apparent sleep delay). But may I say: I love imagining Bub's speech flapping around Heathrow trying to get another flight. And I love the trail he left after the first appointment. I swear they have some kind of radar for the worst times to have blowouts.

penelopeto said...

He is a beauty. Percentiles be damned - maybe he is just the strong, silent type. Nothing wrong with that.

It's not easy to be told that your child is not perfect. Bee's first visit to the doctor, post-midwives was a shocker for us. Previously, our loving caregivers had described our baby in only positive, not alarming terms. Even when they suggested that she get a more advanced hearing test than they could administer, we did not worry.
But then, hello doctor and - BAM! all of a sudden our previously perfect baby had crossed eyes, a small head and a very small soft spot and we had to go see a specialist and an eye doctor.

So we worried for the 4 months it took to see anybody, got the news that all was fine, appreciated that our doctor had used a 'better safe than sorry' approach, but decided to go back to seeing our baby only as perfect.

We've had to go to a few follow-ups, of course, and her head and weight still net low %iles, but whatever. We'll worry about our kids no matter what. Let's not allow some stupid numbers to fuel the fire. Your son is funny, beautiful and perfect.

penelopeto said...

P.S. - you probably already know this, but I just heard that when a child can say 20 words, they can understand 200.

Mayberry said...

I agree with Veronica. YOU know he's made progress and that he's a bright little boy. The numbers are a means to get him some extra help so the rest of the world can get to know him like you do. Glad you're feeling better.

Mrs. Chicky said...

That Bub is one cute kid.

I wish I had advice or just the right words for you but I don't and I'm not going to pretend that I do. I just wanted to tell you that no matter what happens with your son's speech you just have to remind yourself that you're a good mother with a wonderful child who is perfect in his own way.

{{hugs}}

mad_hatter said...

Urgh. I love that the health care system is finally at a place where kids like Bub can recieve help along the way but I hate, hate, hate the way that everything having to do with our children is reduced to #'s and percentiles. Look at that face. It is definitely not the face of a percentile. Any kid who dances to Dexy's Midnight Runners and can count to 39 is gifted as far as I am concerned.

As mommyofftherecord mentioned Einstein couldn't talk until he was 3. This bears repeating.

DaniGirl said...

My brother didn't talk until he was well past his third birthday, which confused the hell out of my parents because I was reading and writing at four. He needed some intervention in grade school to help with his reading skills, too.

Now he's a software engineer and makes way more money than I do.

Go figure!

Jaelithe said...

Oh! The Boy! The Pumpkins! The Cuteness! Why is it not possible to hug through a computer screen?

Three things come to mind:

1.) For there to be an average, some kids have to be above and below it. I know you know this, but it's important to keep in mind. Just because he is below average in his verbal development doesn't mean there aren't lots of kids out there with verbal development at or below his. In fact it's looking like about 13-18% of kids are talking less than Bub. That's one or two out of every ten. That means well over three million people in Canada alone talked less at Bub's age than Bub does. Somehow I doubt all of these people are miserable, lonely, and unemployed.

2.) I know many very intelligent, very verbal adults who have told me they did not speak normally until age four or later. One, as I may have mentioned here before, has a sky-high IQ and is currently getting a PhD in math.

3.) Some people just don't like to talk. And some don't like to listen, even when they are perfectly capable of understanding what is said. You say Bub is very independent and likes to do things himself even when he would do much better with a little help. I don't know if they can somehow scientifically correct for plain stubbornness when they are testing receptive language skills, but something tells me they probably can't . . .

From what you've told me of Bub, I can just see him sitting there silently thinking, "They want me to give bubbles to Mama? Hah! Yeah right. Suckers." It is in fact what I probably would have done at that age ;)

Anyway I hope he keeps getting better and I hope you can stop worrying soon. I can see the expression and intelligence in his gaze. I am sure he will find a way to tell the world exactly what he's thinking soon.

nomotherearth said...

I have nothing to say that hasn't already been said, but I wanted to add my support anyway.

I also have to mention that whenever I read your posts, I am dumbfounded by the depth of intelligence and insight you have to offer. With loving, intelligent parent(s) to back him, Bub is certain of success. I know it. Hang in there!

Ella said...

Both my eldest sons are speech delayed at four and three years old. It's so frustrating for me and for them. Butg my four year old has come on hugely after a very slow start so I would say stay hopeful, the numbers don't give the whole picture, or anything close to it.

Anonymous said...

I didn't see this post until today... I think I may have mentioned in the past that my niece is hf autistic; honestly, I have nothing to add to all the lovely things that have already been said except that his sweet, sweet face looks soooooo much like my baby bro at that age.

Robbin said...

It should be noted that not only was Einstein a late-talker, but he later turned out to be an incredibly gifted writer in addition to his abilities in physics (NOTE - I say physics, because he actually wasn't a particularly good mathematician - he often required help to put his ideas into mathematical reality). It isn't unheard of for some children to "specialize" in their development - and eventually the rest of the skills just catch up. This doesn't mean speech therapy isn't valuable - it is. It just means that if you are seeing progress, it's progress. When his desire to express himself outstrips his ability to communicate non-verbally (bright kids are often very good at finding nonverbal ways to communicate), he will really take off.

laura said...

Gosh, he's a cutie! My daughter's also playing the catch-up game with language and the most frustrating part is all of the waiting. It's my kid, and I wish that I could snap my fingers and have the professionals we need at her side the next day!

That being said, I hope that B doesn't have to wait so long for the next step in this plan, and I hope that you took a moment to give yourself a pat on the back for contributing to the progress B's made! There are no bonus marks for bringing a snack, anyways :)

kittenpie said...

When I (briefly) worked in daycare, I had a little boy in my class who was well into his third year with NO speech, but you may be happy to hear that within six months after starting with a therapist, he was only somewhat behind the other kids - still a little hazy in his pronunciation, but speaking often and eagerly. I give you my hope and wishes that Bub responds as well adn as quickly too!

Ruth Dynamite said...

Have faith. He'll speak when he's ready. Listen to the "experts," but more importantly, trust your own gut about your son.

sunshine scribe said...

Bub is an amazing little boy and you ARE a nice family lead by a mom with amazing parenting skills. I know that you know he is not about the numbers and that it is right to focus on the positive. But you know what ... his flight will arrive. Or he'll find another fabulous route to get where he is going.

That punched in the gut feeling just shows how fiercely you love him. And he'll love you for it.

My husband's uncle didn't say a word until he was 4 and went on to get a PHD in Engineering and become a millionaire. I know that is a trite thing to say but I just know everything will be okay. It has to be.

Oh and the photo ... he's as gorgeous as his Mama.

Hugs to you both.

Girl con Queso said...

As a fellow book lover, I know you'll like this one...

The Einstein Syndrome: Bright Children Who Talk Late

http://www.amazon.com/exec/obidos/ASIN/0465081401/speechdelay

Girl con Queso said...

I don't think the link posted all the way through, but it's on Amazon and Alibirs.

The Einstein Syndrome: Bright Children Who Talk Late

Also, what a fantastic photo. Bub rocks.

Beanie Baby said...

Centiles, bah.

They drive me crazy.

I'm sure you've heard this a million times before, but Einstein didn't start speaking until he was 3. And people thought he was stupid because of it. I know they say it doesn't hurt to check, but I'm not sure of that; I mean, you're hurt, aren't you?

We never struggled through speech centiles, but as a veteran of the size centile wars, I sympathize.

Nancy said...

((hugs)).

I have a slow-to-talk little one myself. Kind of a shock after having one that talked early. While the others her age can string together several words, she only has about 8 in her vocabulary.

I like to think kids like ours are taking their own sweet time, sitting back to observe the world -- and when they do start speaking it will be with eloquence and panache.

karrie said...

I missed this post when I visited yesterday. My son has an expressive delay and it is incredibly frustrating. He can follow very detailed instructions,and has several unusual words (pigeon, bath pouf) but cannot (will not?) ask for a cup of milk.

We're a highly verbal, bookish household and that makes the delay even more difficult to accept and understand.

Kyla said...

I know how you feel. I look at my KayTar at times and soak in her happy, sweetness, and watch her learn new things, and think "Is there really something wrong?" and then the facts come in and I accept the reality of the situation. And it indeed feels like a punch in the gut.

lildb said...

well, from where I sit, you may be one of the best moms I've ever encountered, and your incredible, acute, quasi-prescient awareness of Bub's needs mean that he will be as successful and well-adapted as he possibly can be. and loved as much as he can be.

and that's all that freaking matters, G.

xoxoxoxoxo