Sunday, January 29, 2012

Train Book Breakthrough

Garrett's favorite book is The Train by David McPhail. We bought it for $.10 at a Library book sale.

We've read it to him every night for months. It's the book that I was so discouraged about after reading it to him the first night after his evaluation.

John and I vary who puts Garrett to bed and who reads to him so that he gets time with both of us. Friday night, after another full day of modeling pronouns, interactive play and going out to the store to buy him some fake food for him to play with and a Buzz Lightyear to encourage him to talk for his toys, it was time for bed. John took him upstairs and Garrett started asking for "Train Book" which means he wants to be read The Train.

John had gone through one of the Read Together, Talk Together books about fire engines on Wednesday night and I went through the Read Together, Talk Together guidelines while reading The Train on Thursday night. It took 45 frustrating minutes of interactive questions, explanations and work that I wasn't even sure was getting through. But I used the guidelines given to me by the pathologist and tried my best to shed new understanding on the story.

When John picked up the book and started reading it to Garrett I was happy to hear John immediately start in on the Read Together, Talk Together interactions and even more amazed to find that Garrett seemed much more in tune to the story.

The Train is a very small book about a little boy named Matthew who loves trains. Matthew lets his baby brother operate his toy train and his baby brother runs it too fast. It falls off the tracks and breaks. Matthew wants to fix the train but his father tells him it's time for bed and he'll have to fix it in the morning. They go to sleep and that night Matthew dreams about fixing and running a real train.

John had not been there when I went through the reading guidelines with Garrett while reading The Train so he wouldn't know what questions I asked or prompts I'd given. This was a perfect way to see what genuine information Garrett had gleaned from our going through it with the new guidelines in place.

Immediately we saw amazing results! I was so amazed I had to stand back with my mouth open in astonishment as I saw John and Garrett interacted while reading the book.

"Who is that?" John asked.

"Matthew!" said Garrett.

"What is Matthew doing?"

"On the bed!"

"Right! Matthew's sitting on the bed. What is he doing?"

"What he doing?"

Knowing echolalia means Garrett doesn't understand, John took another approach. "Is Matthew reading?"


John read a few pages of the book where it talks about Matthew and his love for trains and letting his baby brother run his train and breaking it.

"Crash!" Garrett said.

"Yes!" Replied John, "Crash. His baby brother broke the train. What did Matthew say?"

"I can fix it!"

My mouth fell open. "That right," said John. "Matthew said, 'I can fix it!'"

He turned the page to where Matthew's father comes in and tells Matthew the repairs will have to wait until morning. Matthew asks if they can read a book before bed and Matthew's father agrees to read one book.

"What was the book about?" John asks.

"Trains!" says Garrett.

I am in complete astonishment at this point. This is the most interactive I have seen my son regarding a book, EVER!

John turned the page and asked Garrett what was happening.

"Mommy turn on light."

Garrett gets his off and on mixed up but it was still pretty darned amazing as this was the part in the story where Matthew's mother says goodnight and turns off the light.

When Matthew's dream about fixing the train begins it's a picture of Matthew working on a wheel with a wrench. When asked what was going on Garrett said Matthew was working on the wheel. Matthew then cleans a headlight and when asked what Matthew was cleaning Garrett again answered correctly with, "Light!"

Garrett went on to tell us that Matthew helped load the baggage car, passed out pillows and punched tickets. He identified the water tower in the picture where the train takes on water and talked about Matthew helping to drive the train. By the time it got to the end of the story and Garrett said, "Good night!" I was nearly in tears.

Later, after John went back downstairs and Garrett was asleep, I crept into his room, knelt beside his bed and I did cry. I thanked God for such a precious little boy. I thanked Him for giving him to us. I thanked Him for the progress Garrett's made and asked for help for Garrett and for myself and for John. I asked for patience and for wisdom and grace. I watched Garrett sleep, combing his hair with my finger and just wept in gratitude and love.

All my frustrations and guilt for the day were gone and I was so happy and thankful to have see him understanding and enjoying his favorite book with his Daddy.


People who meet Garrett for the first time often ask the question, "What's he like?" meaning, what's his personality like.

I'm often stumped by this question because I feel, sometimes, like his personality is locked behind this communication barrier. I know he loves trains and cartoons. He's pretty easy going except when he's tired but he has not yet started to show truly distinct personality traits, especially around other kids.

He is a personality copycat right now. He mimics children around him. If one kid is screaming, he will scream. If one kid starts throwing a ball, he will throw a ball. If one kid hits, he will hit. If the other children are laughing, he will laugh. And if you look at his face it is as though he is confused but eager to follow and keep up with the other children. He performs all actions with a look of, "I don't know why I'm doing this, but everyone else is doing it so I will, too."

When children take things from him (except for trains) instead of looking hurt or angry he looks confused and then resigned almost like, "Oh, I guess I wasn't supposed to have that." He doesn't fight or argue and when the other child is corrected and told to give the toy back or to apologize it is almost always Garrett who is saying, "Sorry" and receiving the toy back with a look like, "Oh, I guess it's my turn again."

I've even seen him get bitten so hard he was nearly bleeding and just look at the little girl like, "What sort of game is this?" When the little girl (who is almost a year younger than Garrett) was told to apologize to Garrett she refused. Her mother, mortified by what happened said, "You say your sorry and give him a hug." Her daughter said, "NO!" while Garrett leaned over, gave her a hug and said, "Sorry." Later that day he started biting himself and coming to show me the bite marks. Thankfully that didn't last long.

This is not to say he doesn't have fun because often, once one child he's been mimicking has stopped a particular style of play he will continue it on his own and continue laughing in seemingly genuine enjoyment at having learned something new and fun. Unfortunately, the same thing goes for "unwanted" behavior that he learns from playmates as well.

Watching him play with other children is a little like watching perpetual deja vu. Unless, of course, there is a train around, then he's perfectly content to sit by himself and play with said train and ignore anyone and anything else.

Perhaps it's all been part of his echolalia. He doesn't understand what's going on so in order to feel like he is participating and interacting he just echos the actions of other children like he echos the words of adults when he doesn't understand.

Other than with toy trains he has expressed no real interest in branching out to new toys and forms of play. I have been trying to introduce him to new toys and games through puzzles, match games, drawing and other pretend play. Lately, I've actually been trying to keep him away from his trains just a bit to help him branch out and discover what else he might like.

That being said, I've been waiting for his personality to develop and to see him have some original ideas, feelings and expressions.

He goes to two play groups and a children's library group every week and lately I have been seeing him getting a little more belligerent with other kids. This encourages me because it means he's starting to form differing opinions about what they are doing.

While he has yet to hit or push or bite out of anger (as opposed to out of simply copying what he's seen) I'm finding he has a very strong, "STOP!" and the cutest little scrunched up angry face.

I never thought I'd be happy to see my kid finally screaming "STOP!" at other kids and I'm trying to somehow express to him that letting his opinion be known is perfectly acceptable but perhaps not at that volume. Right now I'm a little inclined just to let him keep it up.

Thursday, January 26, 2012

Speech 101: The First 24 Hours

Life is communication.

The better one can communicate the easier life will be. Of course, the opposite is true and the more difficult it is for someone to communicate the harder life will be.

I failed to realize just how hard life is for Garrett right now and to be honest (and to put more miles on my guilt trip) we have failed him in our communication with him. We've come to a place that is "comfortable" for all of us and it has left Garrett at a stalemate.

We did everything that we thought good parents do (played, interacted, played games, didn't let him watch too much TV, read him books, gave him snuggles) but until yesterday we didn't have much in the way of ideas on how to work with him and figure out whether or not he was understanding our communication with him. In honesty, our "play" with Garrett was more of us sitting on the floor and watching him play or running our trains behind his trains or tickle fights or simple interactions that don't require much language.

Armed with some new information from the pathologist John and I wasted no time diving in with our interactive play with Garrett centering more on language.

Right away when we got home I started modeling pronouns. I listened closely for his echolalia and tried to figure out new ways to phrase questions so that he understood. I also spent most of the day figuring out ways to take all of the negative commands I've given him over time into positives. Since he's also potty training, a lot of our time was spent in the bathroom communicating with words like "pee," "potty," and "YEAH!!"

When John got home we jumped right into working on his two-step commands. We got out some toys for Garrett and took turns telling him to take one or two of those toys to Mommy or Daddy. We then went on to interactive pretend play by breaking out pots and pans and setting up a makeshift kitchen in the living room.

It was then we really started to grasp how little he really is listening to us.

We brought out a cup full of colored marbles that he was "cooking" for us and I asked him to give me all of the red marbles. He didn't even register that I was talking to him. John tried to tell him to give me the red marbles and we might as well have been talking to the wall. I started to take all of the red marbles while saying, "I am taking all of the red marbles," and he finally realized that this was something that required both listening and a response and through a series of fights over whether or not I was stealing his marbles he finally started to give me marbles of specific colors or put marbles of specific colors into certain dishes or cups.

That small battle over with we did our homework by watching the "Read Together, Talk Together" video about dialogic reading and asking and responding to questions that expand language.

It was about bed time so John took the first Read Together, Talk Together book upstairs and read him his book and put him to bed.

The next morning started a new wave of challenges for me.

I'm very used to making him breakfast and letting him play on his own while I clean the kitchen and other household chores.

I started collecting laundry after the morning potty rituals and stopped in his room for some interactive play.

The pathologist said it was important for him to incorporate play that includes him having to "talk" for a toy like a doll or animal. She said not to press the issue with him but to model that kind of play for him and see what happens. So, here I am, a woman who has not "talked" for a toy in probably twenty years, on the floor in his bedroom with Woody the cowboy and a stuffed kitty trying to model both sides of a conversation. It was very awkward at first. I'll admit.

Garrett thought this was hilarious and laughed at me and threw blankets at me but I wasn't deterred. After a while I was throwing the kitty into "jail" in the laundry basket and asking Thomas the train to take Woody to the Sheriff's office. When I put the toys down to pick up my screaming 2 month-old I was so happy to see Garrett pick up where I left off and at least try to mimic my play and talk with his kitty, Woody, monkey and goofy bird.

Soon Olivia forced us downstairs for some diaper and potty time and then we were right back to pretend kitchen play in the living room. Garrett expressed to me that he wanted to cook me eggs and that they were hot!

Instead of leaving Garrett upstairs play on his own while I did laundry I let him come downstairs and help with feeding the cats while I did laundry.

Upstairs I modeled pronouns and actions by explaining and trying to get Garrett to help me fold towels.

"I am folding the towel. I fold it in half. Then I fold it in half again."

One of his issues is that it seems like he's listening but he's really only listening for key words that indicate what is going on and skipping over the rest. For instance, when I say, "I am folding the laundry," he knows this means I fold clothes up and put them in piles so if I ask him to help he just wads up clothing and puts it in piles but does not listen or understand the language behind actually folding or putting clothes in specific places.

I worked with him through those steps and then we went upstairs and I had him help me put clothes away.

"I am putting my clothes away. Garrett, where does Daddy's pants go? Daddy's pants go in the dresser. Daddy's pants go in the dresser drawer. Can you open the dresser drawer? Can you put Daddy's pants in the dresser drawer? Can you put Mommy's socks away? Where do Mommy's socks go?"

It was a long but fruitful process.

Then came lunch and the whole process started over again for cleaning the kitchen and doing dishes.

Garrett expressed to me that he wanted to help and instead of telling him no and that this was Mommy's job I figured this could be another opportunity to communicate with him.

He climbed up on a chair next to me and started going nuts. He was throwing dishes here and there and for a moment I didn't think this was a good idea.

I told him to stop and to listen and to put dishes in the water one at a time.

The pronoun modeling started and it was, "I am washing the plate. I am washing the bowl. I am washing the spoon. I am putting the plate on the drying rack. Do you want to help Mommy dry?"

Garrett said, "Yes," so I gave him a plate and he promptly threw it right back in the dish water.

"No, Garrett. That is washing the plate. What do we need to dry a plate?"

Out came his echolalia, "Dry a plate?"

"We need a towel to dry a plate."

"Towel to dry plate."

I took out a towel and started to dry.

"I am drying the plate. I am drying the plate with a towel. We need a towel to dry a plate."

I gave the plate and towel to Garrett and he did well. And step by step I directed him in putting it away.

Then he climbed back on his chair and I gave him the next plate. He promptly threw it into the dish water.

We started the whole process over again.

After about the third or forth try he was starting to realize that drying was not the same as washing and that dishes to be dried did not go in the water. I was even more encouraged when I started to ask him, "What do we need to dry the plate?" he started looking around and thinking about it and finally said, "Towel!"

And it wasn't echolalia. He understood. It was like music to my ears!

We even got to the point where he was following two-step commands like "Give me the towel and put that plate away."

The rest of the day was like this, even down to bath time where I sat there with three trains trying to come up with conversation for the three trains as I mimicked them talking to one another in the bath.

After a few minutes playing trains it was time for bed and it was sweet to have him climb up in my arms and not want to let go, asking to "Snuggle Mommy." 

For bed time I read one of the Read Together, Talk Together books and then he wanted to read his train book.

Now, we've read this book to him almost every night for probably a whole year. You would think he would know what was going on in the story. But using the Read Together, Talk Together guidelines for interaction and the pathologists guidelines for ques as to whether or not he was understanding I got a big slap in the face to how little of the book he actually understands. To him, the book is about trains and that's all that matters.

Almost every question I asked him about what was going on was answered with echolalia. It made me feel like I was being kicked in the gut. Months of reading to him and it seems as though absolutely nothing was getting through. I went through the Read Together, Talk Together guidelines through the book as though we were reading it for the first time. A book that typically took us three minutes to read took almost forty-five minutes.

To sum up my feelings of the day: I am exhausted.

I am encouraged. I am humbled. I am chastised. I am frustrated. I am hopeful. I am mad. I am unsure. I am determined. I feel bad that Olivia is kind of getting a back seat to Garrett as other than feeding and changing her I've been propping her up on pillows and putting her in the swing or just sitting her in my lap to play and interact with Garrett. I feel torn about my responsibilities to him, my daughter and my home. I'm feeling a bit overwhelmed and it's just the first day.

 And now it's off to bed to rest up for day two.

Wednesday, January 25, 2012

The Boy's Speech

For as extraverted as I am, I'm a pretty private person. I don't like or feel comfortable sharing anything too personal, be it positive or negative.

Most of the stories and posts I make to blogs or Facebook are impersonal or personal in a very impersonal way (if that makes any sense).

I keep those closest to me up to date, asking for advice, prayers and help when I feel it appropriate but I rarely vent or just "talk" about certain things that are currently happening with myself or my family.

Today, however, I feel compelled to write about something that can be considered small in the grand scheme of thing but has become pretty big in our household: My son's speech.

This story really begins about a year ago, maybe more.

To put it simply, our son just didn't talk.

He smiled, he laughed, he played, but words, if any, were few and far between.

All around us I saw 2 year-olds who could speak in full sentences and had very developed language while my own 2 year-old remained silent.

When I expressed concerned I was always told, "Oh, every child is different and develops at their own rate," or "Girls talk earlier than boys," etc.

Of course there may be some truth to that but there are benchmarks that all children should be achieving and while my son was making those benchmarks they were the minimum requirements.

We were also a bit encouraged by the fact that a little boy at church who was six months older than Garrett had a more limited vocabulary than he did.

But 2 1/2 came and went and while he continued to add more words he still was not putting together even simple sentences.

I started to think it was time to stop hoping for the best and comparing him to both the best and the worst of examples and get him professionally assessed.

The final straw was, at right around his 3rd birthday, I sat with him in nursery and the little boy who was so far behind him was now talking in sentences, having genuine conversation and my own son was still limited to one or two word back-and-forths that can be considered conversation in only the most primitive of means.

"Purple sippy!"
"Do you want your sippy?"

"Blue train!"
"Do you see a blue train?"

Just after Olivia was born I talked to a mother who's developmentally delayed daughter is in speech therapy and asked her who I needed to contact about getting my son assessed. I also scheduled Garrett for an appointment with his pediatrician who tried to encourage him to converse with her and agreed that he was no longer even making the minimum benchmarks in speech for his age.

Garrett's hearing test
The first step, of course, was a hearing test that he passed that with flying colors.

I was told that the next step was a speech evaluation and that would have to wait until after Christmas.

Over the Christmas and New Years break we tried to work with him more carefully and while he made quick progress with words his language still seemed stalled.

After stalking the early education people for three weeks, they finally got back to me and scheduled Garrett for his speech evaluation.

I can honestly say I wasn't nervous. I knew he wasn't where he was "supposed" to be by the speech benchmarks laid out by people who are in the know about these things but I'd already accepted that this is where we are right now. Because I'm a research fiend I was learning that certain patterns and habits of speech (and other play behaviors) that Garrett is exhibiting can be signs of autism or other developmental delays or disabilities. Yet I wasn't going to put the cart before the horse and think the worst. I had accepted that whatever was, was and there was no point in borrowing trouble from tomorrow though it doesn't hurt to have a little bit of worst-case information just in case. We would take this a step at a time and right now, at this step, we need to find out how far behind he is and if we can identify the problem.

For one whole hour I watched the speech pathologist play and interact with Garrett. We talked about my concerns which she was able to pick up on immediately in her interactions with him.

Through her evaluation she was able to tell me that he has areas wherein he is excelling (even more so than other kids his age) but also areas wherein he is very behind.

The good:
  • He has better-than-average articulation. If given a sound to replicate he can do it and if given any sentence, broken up into one syllable parts, he can say it almost perfectly.
  • He understands simple one-step commands.
  • He can communicate his needs and wants very well through one-word statements. 
  • He can name almost anything you put in front of him and remembers the names of objects very easily.
The bad:
  • He does not understand two-step commands. The pathologist put four toys in front of him (a toy banana, drumstick, fork and french fry), she asked him for the banana and the chicken. He gave them to her but didn't stop there, he also gave her the french fry and the fork. 
  • He does not understand verbal choices such as, "Would you like an apple or banana?"
  • He cannot understand negatives. If told, "Don't touch that," or "Don't throw the ball," all he understands is "touch that," or "throw the ball." 
  • He exhibits a lot of echolalia. Echolalia is when, instead of answering a question such as, "Would you like an apple or banana?" with "apple" or "banana" he echos back part of the question by saying, "apple or banana?"
  • He can not understand the language behind identifying an object's purpose. The pathologist put four pictures in front of him (a pan, a pencil, a sock and a clock). Even though we had gone over these objects and their purposes before hand, when she asked him what Mommy cooked breakfast in he was unable to identify the pan. She asked him what item told the time and instead of pointing to the clock he just grabbed all of the pictures and threw them in the air. According to the pathologist, these are connections he should be able to make by now.
She gave me some homework assignments and some videos to watch along with a couple of books and assessment charts we are supposed to work on over the week. She's going to see him next week and see what progress (if any) he has made and go from there as far as the next step is concerned.

There is no diagnosis or prognosis at this point and according to the pathologist there won't be for another couple of weeks. We all (me, John and the pathologist) are going to need to work with him over the next several weeks to see what he is learning and what he's not and that will help her and us decide what exactly is the issue and if it is just a delay or an actual disability. It will help determine what kind of testing, therapy or work he may or may not need and how we should proceed.

I was warned that his echolalia is his way of communicating to me that he doesn't understand what I'm saying and to not punish or correct him when he starts to exhibit it. I was told to inform everyone who might watch him to be careful not to identify his acting out with "naughty behavior" when he doesn't obey because many times its just because he simply doesn't understand. She said it was very clear to her that he does not understand the language that an average 3 year-old would understand. This struck me particularly hard as there have been many times I have punished or corrected him for things and listened to sentence after sentence of his echolalia thinking it was just his way of telling me he DID understand instead of realizing that it was his way of saying he DID NOT understand.

This weekend we will go out and get some more pretend play toys. He pretend plays like crazy with trains but we're supposed to work with him with other objects and toys, too.

We read to him all the time but now we're supposed to go through the worksheets on how to get him more interactive with the stories.

I'm supposed to be very careful not to use negatives with him and find a way to somehow turn, "Don't do that," into "Do this." Turning "don't hit" into "be gentle" or "don't throw" into "put that on the floor." It's a lot harder than I thought. I'm still trying to find a positive way to say, "Don't throw things at the cats."

I'm supposed to model pronouns. "I am putting your train in the box" as I put the train in the box. "I am making you eggs" as I make him eggs. My day is going to become a series of status updates for him.

I'm supposed to work on his two-part simple commands like, "give me the spoon and the fork."

I'm glad we're finally working towards some answers with his speech. As the pathologist said, he does not have a word problem, he has a language problem.

Yeah, I feel guilty as heck that I didn't get the ball rolling on this six months ago, but I guess there's nothing I can do about that now.

This is definitely going to be a step-by-step process. Here's to taking the first steps.

When I'm awfully low....

God bless Frank Sinatra.

Every now and then, when things get a little overbearing and I find myself feelings lonely or frustrated or tired, for some reason I start to hum a little tune.

It's a well known song that has been around for ages and in countless movies.

It goes like:

Some day, when I'm awfully low,
When the world is cold,
I will feel a glow just thinking of you...
And the way you look tonight.

Yes you're lovely, with your smile so warm
And your cheeks so soft,
There is nothing for me but to love you,
And the way you look tonight.

With each word your tenderness grows,
Tearing my fear apart...
And that laugh that wrinkles your nose,
It touches my foolish heart.

Lovely ... Never, ever change.
Keep that breathless charm.
Won't you please arrange it ?
'Cause I love you ... Just the way you look tonight.

Mm, Mm, Mm, Mm,
Just the way you look to-night.

Now, I don't have any particular memories to go along with the song. There's no one standing in a tux in the back of my mind, or even in a pair of whitey-tighties and a toothbrush hanging out of their mouth that brings about feelings of warmth and glee.

It's just a song that makes me happy.

Then again, anyone who doesn't feel better after listening to Frank Sinatra has issues.

DEEP issues.

Things I Don't Understand: Nautical Bathrooms

There are lots of things I don't understand.

As I've said many times before, I am only human.

But some things I don't understand that maybe are understandable if only someone who does understand would impart upon me their understanding.

One such misunderstanding is the nautical bathroom decor.

It seems to be abundant. In fact, there is not a decor store I have been to that does not have nautical-themed bathroom items such as towels, little wall hangings, compass roses, sea shells, etc.

But what is it about the bathroom that makes for a good nautical scene?

Is it that it is a place with more water than other places in the house?

Now, I realize that other rooms can and do have nautical themes. I've seem nautical kids rooms, dens, living rooms and if someone were a sailor or otherwise interested in oceanography or something, then I guess it makes sense, but some people just do nautical bathrooms just because.

I don't think I've ever seen a nautical kitchen.