Monthly Archives: April 2012

Saying the wrong thing

It’s not an easy thing to talk to someone right after they have a death in their family, but at least there is an accepted script to follow.  “I’m very sorry for your loss,” or “You are in my thoughts and prayers.”  It may be an awkward conversation, but everyone knows where to start.  There are also some acceptable things to say when you learn someone has cancer, like “You’re a fighter.  You can beat this.”  I am still struggling to come up with the right thing to say to a parent who has just learned that their child has autism.  You can’t say, “I’m sorry for your loss” because a child with autism is not dead, nor is he in any danger of dying of autism.  Yet the parent is definitely going through a variation of the grieving process.  You can’t say, “You can beat this.”  Autism is not something that goes into remission.  That child will always have autism.  You can’t say, “I’m sure he’ll be fine” because you don’t know that.  No one does.  What can you say to this parent that will be supportive and kind, yet won’t offend them or make them feel bad? 

After SB’s diagnosis, I told everyone I knew.  There was no way I could avoid talking about it.  It became the only thing in my life, the only thing that I thought about all day long and all night, too.  If you know me, you know that I’m not very good at hiding my emotions and feelings on a normal day.  So there was no way I was going to be able to go about my day without talking about this huge thing that was happening in my life.  Everyone I told had a response that I’m sure they thought was kind and supportive, but I got offended a lot.  No one seemed to know the right thing to say.  Everyone said things that made me either sad or angry.  Why was everyone saying the wrong thing?

The answer is that I was so irrational, so sad, and so overwhelmed that there was literally NOTHING anyone could say that would make me feel better, until I read a certain book.

Do you have a favorite book?   Not just one that you read a lot, but one that you have paper-clipped your favorite pages and underlined your favorite passages because they speak to you so clearly?  I do, and it’s called Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life.  This book is authored by two women.  The first is Lynn Kern Koegel, who is an expert on autism treatment and one of the founders of the Autism Research Center at the University of California, Santa Barbara.  The second is Claire LaZebnik, who is an author of fiction and the mother of a child with autism who was treated by Lynn Kern Koegel.  All of the advice in the entire book is excellent, but it is the segments of the book written by Claire that I really love.  Everything she writes in this book makes me want to jump up and down and scream, “Yes!  That is exactly how I felt!”  

One of my favorite sections of the book is where she describes how she got offended by everything people said to her in response to her news.  I’m probably quoting way too much of her book here, but I just feel like it all needs to be said:

I know I said I was glad I told people, but I have to admit that I was horrible about judging everything said to me in response back then.  I was hurting all over, and however calm and rational I may have sounded, inside I was quivering with the expectation of being hurt more.  Let me give you some examples of the innocuous things people said and how I overreacted to them.

There were the people who jumped a little too eagerly at the news, in my opinion – “Oh, well, THAT explains it.  I mean, it was clear something was going on…”  That reaction always pissed me off.  Are you telling me my kid always looked and acted weird to you?  You never said anything to me, but now you’re telling me you were sitting there JUDGING us all the time?

(Remember, I wasn’t being rational – I was being emotional.  Also remember that I didn’t say any of this out loud.  Thank goodness.)

Another group went for reassurance.  “Oh, really?  Well, I’m sure in a few years he’ll be fine.”  Yeah?  How do you know that?  The experts we’re consulting don’t know what lies in Andrew’s future, but you’re so incredibly clairvoyant you do?  Give me a break.

Sometimes people would try to act like it was no big deal, that they themselves went through something similar with their totally normal kids and came out the other side.  “The early years are hard for all kids,” they’d say.  “We were so worried when our kid was three and didn’t play catch, and now look – he’s captain of the softball team!”  Wait a second – was your kid diagnosed with autism?  Excuse me, but was your kid diagnosed with autism?  WAS HE DIAGNOSED WITH AUTISM?  Because, if he wasn’t, I don’t really want to hear about your experiences.

I knew that those who expressed sympathy meant well – “Oh, how awful!  I’m so sorry for you.  You must be overwhelmed,” etc.  The problem was that, at that emotional point in my life, they only made me feel worse.  My son – my gorgeous, bright, loving little boy – had turned into something so awful that people pitied me for having him.  That sucked.  (Later, I grew to kind of enjoy the pity and sympathy.  But that was later.)

Worst of all were the people who questioned the diagnosis without any medical or neurological information to back up their challenge: “Are they sure?  Because he looks fine to me.  Sometimes doctors just SAY these things because it’s what they like to say.  I just don’t believe it.”  You don’t, huh?  Did it ever occur to you that we didn’t particularly want to believe it, either?  That we ran home to read everything we could about autism only to discover, with a sick stomach and heart, that Andrew had pretty much EVERY SINGLE SYMPTOM of your basic classic autism?  Self-stimulation?  Check.  Social delays?  Check.  Language delays?  Check.  Inability to make eye contact?  Check.  Inability to point to something he wants?  Check.  Inability to follow simple instructions?  Check.  And so on.  We’re telling you our kid has autism because we’ve done the research and know it’s true.  So please don’t start second-guessing us or the experts we trust. 

I realize I’ve gone on kind of at length about how easily I slipped into feeling offended at that time, but it’s for a reason: I want to make it clear how incredibly fragile and wounded the diagnosis had left me.

The truth was, of course, that every friend and relative I spoke to was kind and sympathetic.  They all offered help and support.  I just couldn’t see it, because I was one raw gaping wound, an exposed nerve, a total wreck.

You are, you know, when you get that diagnosis.  You’re a wreck.  There’s this huge thing in your life that wasn’t there before.  It sits there looking at you, and you try not to spend all your time thinking about it, but it just takes up too much space.  You can’t not think about it all the time.

Reading this passage of the book felt like someone was reading the thoughts out of my mind and writing them down more neatly and concisely than I ever could.  And not just reading my thoughts, but reading things out of my subconscious that I didn’t even know were there.  It was actually kind of eerie.  Before I read this, I just thought that no one in my circle of friends and family knew what I wanted or needed to hear.  But after reading this, I suddenly realized that the problem was ME.  Of course people were saying nice and supportive things to me.  I was just too wounded, too irrational, to comprehend it.  I recognized that I needed to stop judging everything people said and just accept their words.  This was so much harder than it sounds. 

(This is not the only passage of the book that I really identified with.  There are many others.  And all of the advice in the book is practical, logical, and positive.  If you have a child with autism, this is a MUST READ!)

There were a few other types of responses that we received that Claire does not mention.  Many people replied by complimenting our parenting.  “Oh, you and Charlie are such wonderful parents!  I’m sure you’ll do all of the right things for him.”  Of course, this is a kind thing to say, and it should have made me feel better.  But it really didn’t, because I had no frame of reference for parenting in a situation like THIS.  How could I know that I was going to do a good job parenting this child with special needs?  I didn’t know a thing about autism!  I once assumed that I knew how to be a good mother, but everything that I thought I knew about parenting had just been thrown out the window.  Another thing people said to me that didn’t help at all was, “God only gives you what you can handle.”  I do believe in God, yet this phrase gives me no comfort.  I think there are plenty of people in this world who are dealing with more than they can handle.  Again, I recognize that these thoughts were meant to be caring and supportive, and people were trying to be helpful, but I just couldn’t see it or accept the support because I was in this constant state of despair.

The only thing I liked hearing about in the time right after SB’s diagnosis was success stories.  “Oh, my neighbor’s kid has autism!  He’s in third grade now and doing really well in school.”  “My nephew has autism, and he is so sweet and kind.”  I clung to stories like these.  I thought about these children often, even though they were children that I had never met.  I needed to believe that it was possible that my child could maybe, someday, be just like them.  Very recently a friend said to me, “Sometimes it’s difficult to imagine your children being different than they are today.  But they will be.”  So true.  When SB was 20 months old, it was almost impossible for me to imagine that he would ever be different from the nonverbal, completely distant toddler who could not communicate with us or understand what we were saying, so he just cried and threw tantrums all day long.

My goal with this essay was to give the reader advice on what to say to a parent who has just learned that their child has autism.  And now that I’m in the concluding paragraph, I’m not sure that I’ve done a very good job.  In the “definitely what NOT to say” category, I can tell you that all comparisons to Dustin Hoffman’s character in the movie Rain Man made me cringe.  The phrase, “you are in my thoughts and prayers” is always good, I guess.  Be a good listener, and know that there may not be anything you can say that can make this painful time go away any faster.  But most importantly, give the parents success stories.  Tell them about real children with autism that you know that are thriving under the care of the right therapists.  And if you don’t have any success stories to tell because you don’t know any children with autism personally, then you can tell them about mine.

Go!

When SB was diagnosed with autism at 20 months old, he still had no words.  Nada.  None.  Zilch.  Zero.  Oh, he made plenty of vocal sounds.  He said things like, “Ti-ka-ti-ka-ti-ka” and “Eee-eee-eee” all of the time.  We pointed this out to the Developmental Pediatrician that diagnosed him, desperately trying to convince her that our little boy was talking a little bit, and did not really have a language delay.  She called these sounds “gibberish,” and informed us that, sadly, they were not actual words. 

By the time he was 22 months, SB could say 3 words.  For some reason, they all started with the letter “B.”  They were “bye,” “ball,” and “baby.”  “Bye” was first.  As we were leaving a family gathering at Christmastime, lots of people were saying “Bye!” to each other all at once.  SB chimed right in.  “Bye!” he yelled.  We were thrilled!  “Ball” and “baby” followed soon after.  Little did I know how hard it would be to get a real, functional word.

Mimicking “bye” was a good first step, but he wasn’t really communicating with us.  He was just copying us like a parrot.  The much more challenging step was to get SB to speak a word that truly showed he was trying to tell us something, share something, or get something from us that he wanted.  You see, children with autism often do not understand that vocal sounds (words) actually have meaning.  Typical children seem to understand this intuitively without being taught.  For children with autism, this is a pre-talking concept that you have to teach them before you can begin to teach them to talk.  And boy is it tedious!

To help you understand what I mean, here is an excerpt from an essay by Jim Sinclair called Bridging the Gaps: An Insidie-Out View of Autism.”  Sinclair has autism and is a co-founder of Autism Network International, an autistic-run self-help and advocacy organization for autistic people. 

“Because I didn’t use speech to communicate until I was twelve, there was considerable doubt about whether I would ever be able to learn to function independently.  No one guessed how much I understood, because I couldn’t say what I knew.  And no one guessed the critical thing I didn’t know, the one missing connection that so much else depended on: I didn’t communicate by talking, not because I was incapable of learning to use language, but because I simply didn’t know that that was what talking was for.  Learning how to talk follows from knowing why to talk–and until I learned that words have meanings, there was no reason to go to the trouble of learning to pronounce them as sounds.  Speech therapy was just a lot of meaningless drills in repeating meaningless sounds for incomprehensible reasons.  I had no idea that this could be a way to exchange meaning with other minds.

As I mentioned in my last post, SB’s first therapist was called an Infant Educator, who was a combination speech therapist/occupational therapist specifically for babies and toddlers.  When he was around 20 months, she created a game for us to play with him that she called “Blanket Swing.”  We put a large blanket on the floor and placed SB on the blanket on his back.  Then my husband and I would each pick up one side of the blanket and swing him back and forth.  He loved it!  Because we are both musicians and wanted this to be somewhat entertaining for ourselves, we also made up a little song that we sang while we swung him.  The song required us to insert a new phrase every time we sang it, and then take turns rhyming back and forth.  Like I said, the song was just to entertain ourselves.  When the song was finished, we stopped swinging SB and put him back onto the floor.  Of course, he wanted more!  The therapist wanted us to encourage him to say, “Go!” to ask us to swing him some more.  Not surprisingly, he said nothing.  But there we stood, trying to get him to say “Go!”  We looked right at him and spoke the word that we wanted to hear, over and over again.  “Go!  Go!  Go!”  Nothing.  The therapist encouraged us to keep trying, and since we were at Phase One of this process, she said that we should do more swinging as soon as we heard ANY vocal sound coming from his mouth.  After a couple minutes of laying there on the floor, all of us getting frustrated, he grunted something that sounded like “Unh!”  We cheered, we praised him, and then we swung him in the blanket more while we sang our silly song.

We only had a therapist for one hour a week back then, which left just my husband and me to work with him for the other 6 days.  She gave us assignments each week that she wrote down in a notebook.  We played Blanket Swing every day.  At first his success was random.  Sometimes he made the grunting sound, and sometimes he just stared at us, and then cried when we didn’t swing him more.  Over time, he got more consistent, and after about 3-4 weeks of daily games of Blanket Swing, he seemed to finally understand that when he said “Unh,” he got more swinging.  At that time, the therapist felt that he seemed to get the concept, and decided to up the ante.  “Unh!” was no longer acceptable.  Now he had to say “Guh,” or some form of the letter G sound. 

It felt like we were starting all over again.  Every day, we would play Blanket Swing.  We would start by swinging him (still singing our silly song,) giving him a freebie before we started demanding sounds from him.  He would lay there on the floor, shouting “Unh!  Unh!  Unh!” and get more and more frustrated that we weren’t swinging him.  We stood over him, saying, “Guh!  Guh!  Guh!” and got more and more frustrated because what seemed to be such a simple concept to us was just so hard for him.  After a couple of days, he finally copied our “Guh!”  There was much praise and cheering!  And of course, more swinging.  (And more silly singing.)  After about 2 weeks of accepting “Guh!” as a request for more swinging, the demand was increased yet again.  Now, his therapist insisted that we make him say “Go!” before we give him more swinging. 

And again, it felt like we were starting all over.  It was frustrating, but we kept at it, because we so desperately wanted our child to talk.  And again, after several days of not getting it, he finally did.  “Go!”  And go we did.  Two months after our very first game of Blanket Swing, our son finally understood that if he used his mouth to form the word “Go!” then his parents would swing him in the blanket some more.  He finally knew that he could use vocal sounds to get something that he wanted.

I remember sitting on the couch and staring out the window one rainy afternoon during this time.  I should have been happy about this breakthrough, but instead I was feeling sad.  Was every single word going to be this tedious and frustrating?  At this rate, how long was it going to take before SB could actually communicate?  If we had to teach him every word like this, he would be in 20’s before he could put together a simple sentence.

Thankfully, we did not have to teach every single word like this.  We encouraged every new word with enthusiasm, and the concept finally did stick.  One Saturday morning, I got out some pretend fruit, and I held up each piece and told him what it was.   “Orange,” I said.  “Banana.”  “Plum.”  “Apple.”  Then, unexpectedly, he said it back to me.  “Apple.”  I was so excited!  “Yes!  Apple!”  I replied.  I had to think quickly.  How could I reinforce this, right now?  I grabbed his hand and pulled him to the kitchen with me and took an apple out of the fridge.  I showed it to him and said it again.  “Apple.”  Then I grabbed a knife, cut off a piece, and gave it to him.  This was during his pickiest eating phase, so I wasn’t sure if he was even going to eat it.  He turned it over in his hand a few times, and then put it in his mouth.  “Apple!” I said.  “Apple,” he replied while chewing.  Every time he said the word “Apple,” I gave him another piece.  We did this all weekend.  My husband and I were thrilled!  Here was another word that he was appropriately using to get something from us.  On Sunday night I spoke to my mother-in-law on the phone, and told her about our Apple Breakthrough.  She expressed concern that if we gave him too much apple to eat in such a short time, it might give him diarrhea.  I really didn’t care.  He was TALKING TO US!

Probably the most humorous lesson here is this: Be careful what you wish for!  If you met SB today at age 7, you might have trouble believing this story.  The little dude never STOPS talking!  Just this afternoon, our whole family went to Panera Bread for lunch.  He stopped every person he saw to tell them, “Welcome to Panera Bread!”  He’s our little unpaid greeter at every store and restaurant.  He talked about how he was going to order a peanut butter sandwich.  He talked about going to the restroom.  He talked about how the milk boxes they sold at Panera Bread were the same as the ones sold by the Noodles and Company restaurant.  He was fascinated by the little pagers that light up and buzz when your order is ready.  Whenever a pager would go off at another table, he would point and yell, “Yay!  Your food is ready!”  (Thankfully, most strangers seem to find his quirks endearing.)  The most ironic thing of all is that one of his current therapy programs is called “Silent Play.”  Last fall we started to notice that he was truly, literally, ALWAYS talking or making some sort of vocal sound, and it was distracting in certain places, like in school and in church.  So now one of the things he has to work on in his therapy sessions is to do an activity, such as a puzzle or a page in a workbook, while being completely silent.  He started with one minute, and can currently do 2 minute intervals.  But it’s REALLY hard for him!  Some days, when it seems like his little mouth hasn’t stopped all day, I think I just might scream if I have to hear, “Hey Mommy!  Watch this!” one more time.  Whenever I’m feeling like screaming, and wishing he would just be quiet for a minute, I try to remind myself how far he’s come.  I make myself think about the Blanket Swing game, and how long it took to hear the word “Go!”  And then I’m happy to hear his voice.

Dum ditty dum ditty dum dum dum

Today’s post is somewhat of a follow-up to my post on February 27, 2012.  That essay, titled, “I’m not an ABA therapist…but I play one on TV” was about teaching SB how to play with toys when he was a toddler.  Young children with autism often have no interest in toys, or don’t understand what to do with toys.  This is also true of today’s topic, which is books.

Most children love to be read to.  They love sitting close to their parent, they love hearing a story, they love looking at the pictures, and most importantly, they love getting their parent’s undivided attention.  This is often not true for children with autism.  As a toddler, SB had no interest in books and absolutely no desire to be read to.  I would try, of course.  I would sit next to him and start to read a book, and he would simply get up and walk away.  If I tried to hold him onto my lap so that he couldn’t walk away, he would cry and yell and hit me until I let him go.  Sometimes I would go to where he was playing (or more likely, stimming with some object that was not even a toy, like the welcome mat by the front door) and I would sit somewhere in the same room and start reading.  I tried reading loudly, I tried reading softly, I tried acting out the story with dramatic gestures, but the result was always the same.  He paid no attention to me, and would often leave the room before I was finished.  But I did this because it made me feel a little bit better to know that I was at least trying to read to him.  Maybe, on some level, he was listening.  There are many things about my children having autism that make me sad.  But I think that the saddest I ever felt was when I wanted to read to my son, and he wanted nothing to do with me.

The very first therapist who worked with SB was called an “Infant Educator,” and was provided by Fairfax County’s Early Intervention Program.  Prior to his official autism diagnosis, the county had evaluated him as “Developmentally Delayed” when he was 18 months old, and sent this therapist to come to our house to work with him for one hour each week.  She was sort of a speech therapist and occupational therapist all rolled into one, specifically for babies and toddlers.  Although she had some good ideas, SB did not make much progress with her, simply because he needed a LOT more intervention than one hour a week at that time.   Once he turned 2, he started going to the full-day special ed preschool program offered by our county, and started making progress much more rapidly.  However, I have the Infant Educator to thank for opening a door to books.

One afternoon during a session with SB, this therapist began to read aloud a shortened, board book version of a children’s book called Hand, Hand, Fingers, Thumb by Al Perkins and Eric Gurney.  The text of this book rhymes and is very repetitive.  She read it loudly and rhythmically, and even tapped the pages aggressively with her fingers in rhythm as she said, “Dum ditty dum ditty dum dum dum.”  (A phrase which is on almost every page.)  SB started to watch her.  He even sat down beside her and paid attention to the book for a couple of minutes.  It didn’t hold his attention long enough for her to finish the entire book, but since it was the first time I had seen him take an interest in ANY book, I was delighted.  He seemed to be intrigued not by stories, but instead by rhymes, rhythms, and repetition.  After she left that day, I poured through our bookshelves and pulled out every children’s book that we owned that rhymed.

I started to try to read to him every chance that I could.  At first he only liked Hand, Hand, Fingers, Thumb, and wouldn’t listen to anything else.  Once it became more familiar to him, he would actually sit and listen to the whole thing.  I tried to introduce new books, but even the ones that rhymed were hit and miss.  I soon realized that if there was more than one sentence on a page, he lost interest.  As much as I love Dr. Seuss, his books were just too wordy for SB at this time.  I only had a few books that he seemed to like, so I went to the library to search for more.

I wandered into the children’s section of our local public library, wondering how on earth I was going to find exactly what I was looking for.  You can search for books in the database by title, author, or subject.  But there is really no way to search for “books that rhyme but don’t have very many words per page,” so I just started digging in the shelves.  I probably looked at hundreds of books that day, and completely lost track of time because I was having so much fun.  I went home with a stack of books so tall I could barely carry it, and many of them were a hit with SB.  His new favorites from that trip were There Once Was a Puffin by Florence Page Jaques and Shari Halpern, Big Fat Hen by Keith Baker, and Chugga-Chugga Choo-Choo by Kevin Lewis and Daniel Kirk.  If he seemed to like a book, I immediately went to Amazon and ordered it so that we could have a copy to keep. 

Just like “Activity Time” gradually helped SB learn to play with toys, this process seemed to gradually help SB appreciate books.  Thankfully, it kind of fed on itself.  At first, he would only tolerate the one book.  But soon there were 2 or 3 that he would sit and listen to in their entirety.  After a month or so, he had about 10 books in his repertoire that he enjoyed.  Slowly, over many months, his stamina increased, and he became interested enough to listen to longer books.  About 6 months after the first time he showed an interest in Hand, Hand, Fingers, Thumb, I was able to read him Dr. Seuss.  Green Eggs and Ham, Fox in Socks, and of course, The Cat in the Hat are some of my favorite titles, and I was thrilled to finally be reading these books to my son.

This was about the time that SB started attending the full-day special ed preschool.  He rode a school bus to and from school, and although the teacher sent notes home in his backpack and answered my emails, I generally didn’t have a lot of information about what went on during his day at school.  He only had a handful of words, so he couldn’t share anything with me about his day.  As the months went by, his repertoire of words increased pretty rapidly, but his language was still somewhat unusual.  You could not really have a conversation with him, but he could request a few of his favorite things, such as “milk” or “up.”  (As in, pick me up.)  He could also name things that he saw, such as “tree” or “ball.”  Over time, he was able to put words together and say things like, “I want milk” or “green tree.”  One night while we were eating dinner, SB started to recite something in a very sing-song-like manner.  “Red bir, red bir, what you see?  Boo horse, boo horse, what you see?”  His eye contact was still not great at this point in his development, but he was definitely looking at me now.  I immediately recognized what he was reciting.  It was from Brown Bear, Brown Bear, What Do You See? by Bill Martin, Jr. and Eric Carle.  I knew the book, and I also knew that we did not have it at home.  Was my son actually trying to share with me something that he had learned at school?  Yes, I believe that he was.  Since there was a time when I seriously worried that my child may never learn to speak, I can’t put into words that joy I felt when I realized that, for the first time, he was telling me about his day at school.  It’s a moment I’ll never forget.

Several months after that first library trip, I found myself in Bowie, Maryland with about 3 hours to kill before I had to perform a concert with the Air Force Band.  I wondered what the heck I was going to do with this huge chunk of time, which was not enough time to go home and come back in Washington, DC traffic.  I found a shopping center and went straight for the Borders book store.  (Sadly, all Borders retail stores have since gone out of business.)  I headed to the children’s section and started browsing.  I was having a fantastic time just looking at books.  I never left the children’s section, and 3 hours later, I realized that I needed to get something to eat and leave for my concert.  Where did the time go?  It was on this day that I had an epiphany.  I had known for some time that when my 20 years with Air Force Band were up, I wanted to retire and do something completely different, but I hadn’t figured out what.  This was the day that I realized how much I love children’s books.  I never knew this before I had children of my own.  I had about 8 years left of my Air Force career, but on this day I knew that after retiring, I wanted to become an elementary school librarian.  (I now have 5 years left.  And 2 months.  But who’s counting?)

I am thankful to report that AB never had this issue.  He has always loved being read to.  His favorite stories are anything about Thomas the Train, but he likes other books as well.  SB is now 7 and in first grade.  And he still struggles with listening to a story, whether I am reading it just to him, or a teacher is reading it to the entire class, or even when he is watching it on TV.  I think when too many words are going by too quickly, he just can’t comprehend it all, and loses interest.  He still prefers rhyming texts and repetition in his stories.  His weakest area in school is reading comprehension.  He can sound out all the words in any book you give him, but it is so difficult for him to retell you what happened in a story, even immediately after he finishes reading it.  His teachers are working on reading comprehension, his therapists are working on it, and of course, his mom and dad are working on it, too.   I am thrilled and grateful that books are a part of his life, and will always do everything I can to help him appreciate books. 

Dum ditty dum ditty dum dum dum.