Say Something

Say Something

Given this family’s penchant for chat, I thought the next natural topic would be speech. 

In the early days, pre-Leukemia and pre-Autism, Coleman didn’t say a lot.  He was around a year old when we realized something wasn’t quite right.  At first we thought he might have a hearing problem, but after a test at Children’s Hospital (where remarkably they tested his hearing after they put him to sleep) we knew his hearing wasn’t the problem.  By 15 months, he had lost a few of the words he had been saying, and with the onset of Leukemia and the harsh treatments that followed, he lost the rest.  He didn’t say anything.  In a tiny way, it was a relief during treatment.  I remember one night in the hospital, and we were sharing a room with a 6 year old little boy and his mom.  The poor boy cried and cried, saying over and over again “Mommy, it hurts.  Make the hurt stop.”  I lie in the bed next to them, Coleman at my side, asleep for a rare moment, and cried for them both.  Coleman never could tell me how much it hurt, never ask me to stop a pain I wasn’t able to stop, and never asked to please leave the place we had to stay.  There was some relief in that, to be honest.  

When Coleman’s treatment for Leukemia ended, he was four years old and he was completely non-verbal.  I remember the packet and pages of questions Children’s Hospital had sent ahead of the testing for Autism.  Some of the questions were geared at understanding Coleman’s expressive language.  The first question was “About how many words can your child say?” and there were boxes beside to be checked:  0-10 words, 11-20 words, 21-50 words, 51-100 words, more than 100 words.  I stared at the question for a long time, before I put the packet down.  I went back to it later and stared some more.  I stayed on that first question for a long time.  I couldn’t come to 5 words, let along 10 or 20 or 100.  I had never thought of Coleman’s lack of speech in terms of numbers.  I thought, well, he doesn’t say a lot but he can talk.  He says some things.  But I couldn’t come up with 5 words and suddenly his lack of speech was startling.  I followed Coleman around like a shadow after that, hoping I would hear some words, something I had forgotten, so I could run to the sheet and proudly check the higher number, sneering in my mind “Ha! I knew it!”.  But that moment never came, and I had to check the first box, and felt deflated.  The testing seemed over before it even began. 

Living with a child without language has to be one of the most difficult trials of Autism for parents.  Imagine not ever hearing your child simply say “Mom”.  Having them stare at you lovingly with no sound.  It is devastating.   You want to plead it out of them.  You speak slowly and purposefully to them.  Just a word.  Say something.  Say anything.  But the silence is deafening.  I had a younger sister whose handicap was not defined back years ago, but she was largely non-verbal.  She had some words, but for the most part she could not talk.  She helped our family learn how to communicate without words, how to ask, answer, entertain, satisfy, and comfort without language.  You pick up on gestures, signs, sounds to help you navigate the quiet world they live in.  But it can be sad as hell.  So give your friend with the non-verbal child an extra hug today.  She probably needs it. 

Lucky for us, Coleman’s speech slowly and steadily improved.  I could check the last box now, with more words than I can possibly count.  For this, I am forever grateful.  His language, however, is not functional or conversational.  Approximately 80% of his speech is echolalia. Echolalia is literally the repetition of words and sounds a person has heard either recently or some time ago.  Many children with Autism who are verbal are echolalic which means that they do use words (and sometimes use those words appropriately) but their word choice is based on a memorized pattern.  Coleman's pattern is most often in the form of his favorite t.v. shows.  He can repeat the entire episode, verbatim, word-for-word, with expert character impersonations.  Everything including the sighs.  He also finds phrases he loves, that are somehow extraordinarily soothing to him, and says them over and over again.  Sometimes the phrases seem appropriately timed.  For example, when he is angry, he usually repeats a particular episode of the Nick Jr. show Ni-Hao Kai Lan.  In the episode, Tollee hits Rintoo because he is really mad, so Coleman will focus on and repeat this section of the show.   Sometimes the phrases make no sense to us, just random ramblings he is unable to stop.  Coleman’s language is interesting.  In his echolalia he says full sentences with words I am sure he does not even understand.  We all know the phrases too, and can bring them up to him in more useful situations. For example, he loves a phrase from the Max and Ruby Safari episode:  “Some exotic creatures have colorful markings.  So keep an alert eye out for bright colors.”  We’ll use that phrase when we go for walks outside and he smiles when we say it.  But he has no idea what exotic creatures means and is certainly not keeping an alert eye open for them.   

For the 20% of Coleman’s speech that is functional, it is an enormous help.  He is able now to tell us when he is hungry or thirsty, what show he wants to watch, if he wants to go somewhere, and of course he able to say no, which he says quite often.   It seems like, in fact, he is always talking.  Just like his sisters.  And Father. And Mother.  But the process took time, and we are still working on conversational back-and-forth speech.  Helping a child to learn to speak is intriguing to me.  What we think is natural is actually learned.  Like feeling pain and verbally reacting to it.  But for kids like Coleman, you have to give them the words they need to match up to that feeling.  And you have to do it over and over and over again.  So, when he falls down, or hurts himself, we jump in and say, in an exaggerated manner, “OUCH! THAT HURTS!!”  so he learns that pain and “Ouch, that hurts” go together.  And then he can generalize ouch to other feelings of pain.  For now, if he hurts himself, he does say “Ouch” – although he still doesn’t add “That hurts” so I guess we only get partial credit on this one. 

In trying to help in the taking-turns part of language, we ask him questions he will have an answer for.  I’ll ask “How was school Coleman?” and he’ll say “It was good!” and I’ll ask “Did you have fun?” and he’ll say “It was good!” and I’ll ask “Did you see your friends?” and he’ll say “It was good!”  Baby steps.  But he’s getting better.  I used to ask “Did you have gym today?” and he would exclaim “Yes!” and I would ask “Did you have art today?” and he would exclaim “Yes!”…they only have once special each day so I knew he wasn’t getting it.  So now I ask “What special did you have today” and he will answer it correctly. Usually.   

The more difficult parts of his speech include relaying what bothers him, especially when he is feeling ill – he can’t verbalize what hurts him.  He can’t say “I feel like I’m going to puke” which is why we have been puked on more times than one cares to recall.   But we have made progress here as well - he will now say to me “Want some medicine?” which means something is bothering him, and I can at least give him Tylenol.  This is a HUGE step for us.  The puking part, however, is still not under control.

One of the frustrating but from-the-outside-looking-in funny parts of Coleman’s speech is his need to be repeated. Consistent with his echolalia, Coleman likes for us to repeat certain words back to him.  We’re trying to stop this habit – oh, so much harder than you think.  He is like Chinese water torture.  He keeps saying the word over and over and over and over and over again, standing right in front of you, following you out of the room, up the stairs, down the stairs, into the bathroom….there is no escaping him.  He is on you, pulling at you, to just say the damn word.  This would go on for hours I tell you.  And for the love of God, we end up saying it.  And so this dysfunctional language piece hasn’t changed.  The words are nonsense.  “Ruby’s Picnic.” “Ride a bike.” “Go Sledding.”  “Catch the Bus.”  We have to say these words at random times throughout the day, but mostly when anyone leaves him – say the words before you go please, or leave the one in charge to deal with the sobbing, inconsolable hot mess of a child left behind.   The phrase changes every time.  So when we drop off the kids, they have to turn and say “Ruby’s Picnic” or Billy leaves for work and he has to yell from the car “Max’s birdbath” or I run to the supermarket and have to say “Robot Repairman”.  Five degrees out, storm raging, snowy wind blowing all around – doesn’t matter - there I am,  front door wide open, standing with Coleman in my not-so-Victoria Secret-ish PJs as Billy yells over the storm the words Coleman has requested:  “Go to the Zoo!”  The fun never ends over here I tell you. 

So, in all, we have a very verbal child, who sometimes talks crazy talk, sometimes talks meaningful talk.  But the moments of meaningful speech make it all worthwhile.  Especially for those rare moments when, if all the stars are aligned, the timings is right, and he is focused, I say to him "Coleman I love you” and he looks me right in the eye and says “I love you too.”   Pure Heaven that is.