Monthly Archives: February 2012

I’m not an ABA therapist…but I play one on TV

SB was diagnosed with autism when he was 20 months old.  Only a few months later, we started him in ABA therapy at home and also in a special education preschool program that is based in ABA.  I feel that both preschool and therapy together had a huge impact on the amazing progress SB made in his early years.

SB’s delays were very considerable, so there were many different areas that needed work.  His teachers and therapists tackled things like noncompliant and tantrum behaviors, receptive language, expressive language, fine motor skills, and countless other things.  All of these things were important, and his school and therapy schedule kept him very busy.  By the time he was 3, my husband and I were thrilled with the significant progress he had made in all of these areas.  But as his Mommy, not his therapist, there were some areas of his development that also seemed important to me that just weren’t being targeted.  The most obvious one was that my son did not know how to play with toys.

I have tried to explain this to many of my friends who have typical children, and they usually look at me like I am nuts.  “What do you mean?  He doesn’t know how to play with toys?  All kids know how to play with toys!”  No, they really don’t.  When SB was 17 months old, and not yet diagnosed, he really had no interest in most of his toys.  I was starting to wonder when that was going to happen.  Instead of using his toys, one of his favorite ways to pass the time was to repeatedly open and close the bathroom door.  He didn’t know how to work the doorknob, but he would violently throw the door until it hit the frame without latching, and then violently throw it open again.  Over and over and over.  He actually broke 2 hinges on the door doing this.  Another favorite pastime was to take the welcome mat by the front door and flip it over, and then flip it back again.  He could do either of these things for hours if we let him.  He had a few toys that he liked, but only the ones which had buttons that caused a light and sound when pushed.  He would hold these toys very close to his face and push the buttons repeatedly, also for unusually long periods of time.  The one exception was a yellow toy taxi cab with a happy, smiling face on it.  We could get him to interact with us occasionally by pushing the taxi back and forth in our kitchen.  Because he had loving parents and grandparents who wanted to spoil him, SB already had quite an arsenal of appropriate toys.  Blocks, balls, cars and trucks, puzzles, and pretty much any toy you can imagine.  But they mostly collected dust, waiting to be played with while their owner turned over the welcome mat for the 8000th time.  (I should mention that I went through a terrible stage of guilt when I learned that SB was not “playing by himself” when I let him open and close a door all afternoon, but was in fact participating in behaviors that were actually hindering his development.  What a terrible mother I must be, letting him do these weird, repetitive things all day!  But I covered plenty of guilt in last week’s post, so I’ll move on.)

During this period, we went to a child’s birthday party at someone’s house, and I was lamenting to a friend how sad it made me that SB didn’t understand how to play with toys.  She looked into the playroom where a dozen or so children were playing happily.  “What are you talking about?” she exclaimed.  “He’s playing with the pretend kitchen right now!”  At a casual glance, it did look that way.  A few girls were dressing some princess dolls, a few boys were playing with cars, and SB was playing in the pretend kitchen.  But I knew what was really happening, because I watched him longer than anyone else did.  What he was actually doing was this: He went to the microwave in the pretend kitchen, and opened the door.  Then he closed it.  Then he opened the microwave door.  Then he closed it.  Then he opened the microwave door.  Then he closed it.  And do you know what he did after that?  That’s right – he opened the microwave door, and then he closed it.  He was not pretending to cook chicken nuggets.  He was not preparing lunch for his friends.  He was not even being silly and pretending to cook the toy cars.  He was just opening the microwave door, and then closing it.

When SB was doing these repetitive things, he was not playing.  In the autism world, this is called stimming, which is an abbreviated way to say “participating in self-stimulatory behaviors.”  Just like the word “smurf,” the word “stim” can be used as just about any part of speech you want.  Noun – “That girl has a lot of vocal stims.”  Verb – “He is stimming with his toys a lot today.”  Adjective – “We need to try to curb some of her stimmy behaviors.”  A stim is simply any repetitive behavior.  Some common stimming behaviors in autistic people are rocking back and forth, making vocal sounds, and moving objects past their eyes, but there are an infinite number of repetitive behaviors a person can use to stim.  This is actually something that we all do.  Do you know anyone who twirls their hair, bites their nails, chews on a pencil, or bounces their leg?  They are stimming.  The difference between a typical person and a person with autism is that the autistic person can get so absorbed in the stim and can get so much gratification from it that it drowns out the rest of the world, being more satisfying than contact with other people.  Also, an autistic person does not understand when it is socially appropriate to stim, and when it is not.  I could write an entire blog entry just about stimming.  In fact, I probably will someday.  But for now, I’m going to get back to toys.

Our public school program here in Fairfax County has a lot of great resources.  Every once in a while, the special education teachers will hold free lectures for parents on a variety of topics.  When SB was 3 1/2, I noticed one of these upcoming lectures was about the use of toys, and I knew I had to check it out.  The seminar was a good one, and it gave me a lot of ideas about how to teach SB to use toys.  The first suggestion was to have the child sit at a table for your toy-teaching session, as though it was time to do school work.  This made sense to me, because I knew that following SB around the room with different toys and saying, “Hey!  Look at this!  Isn’t this cool?  See what it does?” had absolutely no impact on him at all.  It was like I wasn’t even there.  The next suggestion was to use the same principles of ABA therapy.  This meant to demand a simple, manageable task from the child, and then provide the child with a reward when the task was accomplished.  This also made sense, because I had seen his teachers and therapists doing this with him for over a year.  And the final suggestion was to go back to the basics.  It doesn’t matter if your child is 3 or 4 or 7.  If they don’t understand how to play with basic baby toys, they certainly can’t understand how to play with age-appropriate toys.  They won’t be able to do developmental step 5 if they can’t do developmental step 1.  Although I felt sad that I was going to have to pull the baby toys back out of storage, this made sense to me as well.  The instructor suggested that we start with a 20 minute session and slowly build up to a longer amount of time.   This is when I rudely laughed at loud!  The looks I got from around the room were a mixture of contempt at my rudeness and nodding with understanding.  I told the instructor that I had not been able to get my child to play appropriately with toys for one minute, let alone 20.  She told me I should start wherever my child needed to start.  Fair enough.

So I decided to set up a time each afternoon when SB and I would work on nothing but playing with toys, and I called it “Activity Time.”  Before starting, I needed to come up with a good reward, or as they call it in ABA, a strong reinforcer.  Since one of SB’s earliest words was “bubble,” (well, it sounded more like “buh-buh”) I bought a battery-powered bubble machine, hoping that it would do the trick.  The toys I chose to begin with were a Fisher Price shape sorter with 4 different shapes (for ages 6 months – 3 years), a Fisher Price ring stacker with 4 rings (6 months – 2 years), and a wooden puzzle with 3 chunky pieces that had handles on each piece (1 – 3 years.)  On the first day, I told SB to sit at the table with me, and I set a kitchen timer for 2 minutes.  I put the shape sorter in front of him, and used the circle to demonstrate how to play with it.  (The circle is the easiest shape, because there is no need for it to be oriented a certain way to fit into the hole.)  Using the simplest language possible, I said “put in,” and then put the circle in the hole.  He was, of course, not impressed.  I then put the circle in front of him and gave him the same direction: “Put in.”  Not surprisingly, he did nothing.  I gave him the direction again, and again he did nothing.  Now it was time for what is called “hand over hand,” which means that I placed my hand on top of his hand and forced it to follow my command.  Together we picked up the circle and put it in the shape sorter as I again said “put in.”  Even though he didn’t really accomplish the task on his own, it was time for the reward.  I yelled and cheered!  “You did it!  Good job!”  And then I turned on the bubble machine for 10 seconds.  Finally, something impressed him.  “Buh-buhs!  Buh-buhs!” he shouted.  He clearly wanted more.  I went through this ritual 4 or 5 times using hand over hand.  (I wish I had kept notes when I was doing this, so I could remember the details more clearly.)  And finally, one of the times I instructed him to “put in,” he did it on his own.  Now it was time for unabashed clapping and cheering, and 20 seconds of the bubble machine.  “Hooray!  Hooray!  Hooray!” I shouted.  He grinned at me and laughed at the bubbles.  And then, the timer went off.  We were only at the table for 2 minutes, but we had a successful moment, and that meant everything.  I had promised him a Thomas the Train video when the timer went off, so he excitedly ran to the den to watch his show.  Yes, I gave him a 30 minute reward for 2 minutes of work.  You have to start somewhere.  As my husband set up the DVD in the player, I slumped over at the table.  I was exhausted!  How could 2 minutes of work leave me feeling so spent?

Over the next year, I was able to increase the time we spent at the table to 15 minutes.  More importantly, I continuously rotated the toys that I used.  When SB demonstrated that he could use a certain toy appropriately and with ease, I put it back into his play area and pulled out a different, more advanced toy.  It usually took about 1 – 2 months for him to get this proficient and independent on each toy.  Occasionally I would introduce a toy that just did not seem to interest him, no matter how many times I tried.  I decided that he was allowed to have a few toys he didn’t care for, and would move on to something else.  Believe it or not, this process actually worked to teach him how to play with toys!  During play time, he started to choose toys that he had learned to use in “Activity Time” instead of choosing repetitive activities, at least for small periods of time each day.  And he would not use these toys in a stimmy way, but would use them correctly.  Don’t get me wrong, he still spent plenty of his free time stimming, but slowly we began to see him playing with toys for more and more of his day.  It happened very gradually, but it did happen.

I am proud of how this process played out.  But before I toot my own horn too loudly, I must admit that when I started, the hardest work had already been done.  Getting a withdrawn, autistic toddler to simply sit in a chair and follow a direction is more challenging than you can possibly imagine.  Instead of describing how this went for SB, I thought I would quote an excerpt from the book Let Me Hear Your Voice by Catherine Maurice, because she tells it better than I could.  In this passage, her 2-year-old daughter Anne-Marie is having her first ABA session with her therapist, Bridget.  It was 1988, and ABA was not a standard therapy for autistic children the way it is now, especially not for children this young.

I led Anne-Marie into the bedroom for her first session with Bridget.  I was very nervous.  An assault, yes.  A radical approach, OK.  But by me.  Not by some stranger.  Not with this “behavior modification” business.

Anne-Marie was whimpering and crying already.  Bridget was very serious.  She was scaring me.  Unlike Robin, (the speech therapist) she did not try to woo Anne-Marie and charm her with fun bubbles and laughing peek-a-boo games.  She had work to do.  About her there was an urgent sense of time speeding by.  We had to get going.  No time for chitchat or hand-holding sessions with Mother.  There was not a minute to be wasted.

On the table she placed the reinforcers: apple juice, goldfish crackers, broken bits of chocolate cookie.  She set out her notebook and her pens.  She took off her watch and laid it face up on the table in front of her.  She placed two chairs – one for her, one for Anne-Marie – close together, facing each other.

As soon as Bridget placed Anne-Marie in the opposite chair the crying broke out in earnest.  Anne-Marie tried to get out of the chair; Bridget kept placing her firmly back in.  She collapsed on the floor; Bridget picked her up and put her back in the chair.  She tried to put her hands in front of her face; Bridget took them down and held them in her lap.

Anne-Marie was terribly fearful and distraught.  She turned and looked directly at me, for the first time in weeks.  Her mouth was trembling.

I was cold and clammy with tension.  Was this right?  Was I doing the right thing?  But I had wanted an assault.  Hadn’t I decided that we were going to “drag” Anne-Marie out of autism?  Oh, God, what did I want?

It went against everything I had ever thought about child-rearing to physically force a child against her will, especially one who seemed not defiant, but terror-stricken.  What kind of message was I sending to Anne-Marie?  She was looking at me for help.  How could I refuse?  I let out a long breath and held myself back, by force of all the reason I could muster, from rescuing her.

The first program was a simple one: “Look at me.”

Bridget said it ten times in a row, holding a reinforcer at eye level, putting her other hand under Anne-Marie’s chin to lift her head up.  Each of the “discrete trials” was to be given a mark in the notebook.  A plus if Anne-Marie looked spontaneously, a minus if she didn’t look at all, and a “plus with prompt” if she looked with the physical promptings and the food reinforcers.  I kept pacing in and out of the room.  Staying there and watching was too hard, staying outside was too hard.  I couldn’t stand seeing Anne-Marie so upset and not being able to pick her up.  But I had made a pact with myself to give this therapy a try, and if I was going to give it a try I had to at least let Bridget finish the session.

Bridget seemed completely unfazed by Anne-Marie’s sobbing.  How could she be so calm?  She must not have a heart.  She just kept prompting Anne-Marie through the trials, as though all this terror and distress were not happening.  After each trial of “Look at me,” she offered Anne-Marie a goldfish, and praised her.  “Good looking, Anne-Marie!” or “I like that good looking!”  Anne-Marie refused to accept the reinforcer.  Bridget wasn’t bothered by that rejection, either, but still offered her food and praise, even though it was Bridget who was prompting the looking, not Anne-Marie doing it voluntarily.

“Poor child,” said Patsy (the nanny).  Anne-Marie had been sobbing for close to an hour.

“I know, Patsy.  But we have to…there’s nothing else…Bridget’s not hurting her; she’s just making her sit in the chair…”

Yes, it felt exactly like that.  For months.

When I started doing Activity Time, SB already had a year and a half of ABA under his belt.  He had already been “broken in.”  He was used to sitting at a table and being given a direction to follow.  In fact, it was the only place he was willing to try new things.  The other bonus is that doing Activity Time consistently for several years led to a smooth transition to homework when he got to school.  Yes, they assign homework in kindergarten these days!  Getting him to cooperate when the assignment is challenging continues to be hard, even now in first grade.  But getting him to come to the table willingly to start homework is usually not a problem.

The one area where I feel I never achieved the success I had hoped is pretending.  Pretending is very hard for kids with autism, because their minds are so literal.  I once sat at the table with SB and some plastic fruit and tried to get him to pretend to eat it.  I held an apple to my mouth and said, “Oh, yummy, yummy!  This apple is so tasty!  Yum yum yum yum yum!”  He looked at me like I was nuts, and even though he didn’t have the language yet to say it, I could read in his face what he was thinking: “What the hell are you doing, Mommy?  That’s not an apple.  That’s a piece of plastic.”  One of the things I learned in that seminar was the difference between open-ended activities and close-ended activities.  A close-ended activity is something that has a very definite ending, like a puzzle or a board game.  There is no question when the activity is finished.  SB got very good at these.  An open-ended activity has no clear goal or ending, such as playing house, or pirates, or any other pretend game.  I tried many different ways to try to get SB to enjoy open-ended activities, but never really had a lot of success.  I finally decided that the most important thing was to get him to use his free time using toys appropriately instead of stimming, and that if he never learned to pretend, well, so what?  There is nothing wrong with doing jigsaw puzzles with your free time.  Years later, when his brother got older, they started to create pretend games together.  Weird games, but pretend games nonetheless.  The first time they did this I found them in SB’s bedroom, where he has 2 closets with metal folding doors.  They were going in and out of the closets, pretending that they were entering and exiting elevators in some large skyscraper, and announcing what floor they had arrived on each time they exited.  A little strange, but also kind of cute.  Soon after that, they used magnetic letters to label the closets “men” and “women,” and pretended to use the closets as public restrooms.  I decided that this was perfectly fine, as long as they weren’t actually peeing in the closets.

A few months after I started Activity Time, I told SB’s ABA therapist about what I was doing, excited about the progress I felt I had seen.  He was completely appalled!  “What!?!?!” he exclaimed.  “You’re not taking any DATA?!?!?!”  No, I had not been taking data.  I had kind of been winging it.  He made it very clear that he did not approve of my methods, and did not support what I had been doing.  Since I felt I had seen success, I continued my procedures without his blessing.  (For a number of different reasons, we have since changed therapists.)

I want to make clear a few things that I am NOT trying to say in this essay:

1 – I do NOT think that as a parent you can tackle all of your child’s issues on your own.  If you have a child who has a diagnosis of autism, you should ABSOLUTELY have a trained, licensed ABA therapist working with your child.  In fact, you can avoid some of the mistakes I made by involving your therapist in your plan.  Your therapist should be able to give you good ideas and tips to help you and also instructions on how to implement the plan and how to take data.

2 – I do NOT think that taking data is stupid.  Your ABA therapist should DEFINITELY be taking data.  It’s the only way to really see which programs are helping and which ones are not.  If your ABA therapist is not taking data, you should certainly be asking them “why not?”

Here is the point that I AM trying to make:  You do not need a degree in special education or behavioral science to help your child.  Using a few simple principles of ABA, you can supplement your child’s therapy.  Nobody knows your child better than you do, so follow your instincts and keep trying things.  Lord knows I’ve used plenty of trial and error, with an emphasis on the error.  The only way you can help your child is to try.

Inside the thoughts of a crazy woman

When something bad happens to you, like your child being diagnosed with a neurological disorder that has no cure, sometimes your mind thinks weird thoughts.  Irrational, strange, bizarre, and peculiar thoughts.  There are a lot of emotions going on in your mind as well, such as sadness, fear, anxiety, despair, jealousy, and anger, among others.  One of the biggest (and most irrational) of my emotions when my first child was diagnosed with autism was guilt.

What causes autism?  No one really knows for sure.  Most scientists agree that genetics are involved, but are not certain if other factors are involved as well.  In the middle of my most irrational, guilty period after SB’s diagnosis, I was certain that I had somehow caused this to happen in my child.  Please know in advance that I DO NOT actually believe that any of the things on this list caused autism in either of my children.  I’m just letting you inside the thoughts of a crazy woman (me.)  I’m warning you, it may not be pretty…

1. In the second trimester of my first pregnancy, I fell down the stairs.  Not a head-over-heels tumble, but just a slide down on my backside, my tailbone hitting each step with a “bump, bump, bump.”  I was carrying some bottles of soda to store in the refrigerator we have in the basement.  (More on soda later.)  I was more stunned than anything, so I got up and brushed myself off.  I continued to feel the baby move, so I didn’t think much of it.  The next day I had to speak to my Gynecologist’s office about my Gestational Diabetes (more on that later as well), and when I mentioned the fall, the nurse really let me have it!  She scolded me for not coming in right after the fall, and demanded that I put down the phone, grab my purse, and head to the hospital immediately for a stress test.  I was shocked and terrified, not realizing that I may have put my baby in jeopardy.  Turns out everything was fine as far as they could tell.  But later I wondered – could falling down the stairs and not going to the hospital immediately have caused my son’s autism?

2. I had Gestational Diabetes in both pregnancies.  It was a major pain in the ass! Thankfully I was able to control it with diet alone, and didn’t need insulin.  I had to prick my finger four times a day to check my blood sugar (as a clarinetist, this was especially annoying because I had sore fingers all the time) and had to keep my blood sugar between 80 and 120.  Being the Type-A person that I am, I was pretty good about eating what I was supposed to and following all of the doctor’s directions.  My doctor always seemed pleased when she saw my blood sugar numbers at my check-ups.  But I may have strayed a few times, occasionally eating a small piece of cake or a serving of rice that was a little too big.  Once in a while, my blood sugar may have reached 145. (gasp!)  If you know anything about diabetes, 145 is not really that high, especially when I think it happened less than 5 times in 3 months.  But later I wondered – could that piece of cake I ate that caused my blood sugar to go up have caused my son’s autism?

3. When you have Diabetes of any kind, sugar and carbohydrates make your blood sugar go up quickly. This is why you have to limit those things.  Protein does not have this effect, however, so you can eat lots and lots of protein and still keep your blood sugar in check.  The diet I was supposed to follow required me to eat protein 6 times a day.  Who eats that much meat?  So I found myself eating tons of peanut butter.  I put it on ice cream, in oatmeal, and on all sorts of stuff that might make a non-pregnant person’s stomach churn.  And I later wondered – could all of that peanut butter I ate have caused my son’s autism?  (Okay, really, there is no logic to this one at all.  I know.)

4. I am addicted to soda.  I always have been.  My parents laugh that one of my first phrases as a toddler was “Dink of bop.”  (Drink of pop – I am from the Midwest, you know!)  I drank regular soda until I was in my late 20’s and realized I needed to lose some weight.  So I joined Weight Watchers, and switched to diet soda.  Yes, I know it’s full of chemicals that are very bad for you.  Yes, I know that it peels paint off of cars.  I’ve read all those articles, too.  Like a smoker addicted to nicotine, I just can’t stop.  I really think that if someone told me I could never drink alcohol again, I would be disappointed, but I could do it.  But if someone told me that I could never drink soda again, I don’t think I would be able to handle it.  I could try, but I would probably be like the alcoholic who goes to the bar for a drink right after my AA meeting.  I drank diet soda during both of my pregnancies.  My doctor said it was fine.  My doctor and I actually discussed different artificial sweeteners at length since I had Gestational Diabetes and sugar was mostly forbidden.  Even though I had my doctor’s blessing, and even though I never consumed more than 12 ounces in a day, I still noticed the dirty looks I was getting from strangers and even friends who saw me with my can of Diet Dr. Pepper.  And later I wondered – could drinking diet soda with aspartame have caused my son’s autism?

5. Before SB was born, I read tons and tons of books, including several about breastfeeding.  I was incredibly determined to breastfeed my baby.  It was the very best thing to do – everything I read told me so.  And everything I read also told me that you should absolutely, positively, NEVER give a newborn baby a bottle before they learn to latch on to the breast, or they will get lazy and never learn how to latch on.  So when I brought SB home from the hospital, I put him to my breast every 60-90 minutes like I was supposed to, even though he slept almost constantly and hardly ever woke up to eat.  “Is he latching on?  I can’t tell!  How are you supposed to tell?  Does it look like he’s sucking?  How the hell am I supposed to know?  Is he peeing?  Is this diaper wet?  I’m not sure!”  After 4 days of this, I was starting to get nervous, and my baby was starting to look yellow.  But we got hit by a big snowstorm, and couldn’t go anywhere until day 5.  When I finally showed up at the hospital, they took one look at my baby and started to panic.  Apparently, he had not been getting nearly enough milk, and he was incredibly jaundiced with a bilirubin level of 25.  (Anything over 10 gets a diagnosis of jaundice.)  He was immediately admitted to the NICU and placed under phototherapy lights, and was also given a strict schedule of round-the-clock bottle feedings every 90 minutes.  I was crushed, and very afraid.  Not only was my baby being bottle-fed with formula (Oh no!  Everything I had read told me that this was the most terrible thing you could do!), but my own stupidity about babies and stubbornness to breastfeed had put my child in danger.  I overheard one of the NICU nurses say when she thought I wasn’t listening, “Bilirubin of 25!  That could cause brain damage!”  I can’t put into words the horror I felt.  And later I wondered – could my son’s very bad jaundice have caused his autism?  This question leads me directly to number 6:

6. After SB got over his jaundice and was released from the hospital, I worked very closely with a lactation consultant, still determined to breastfeed this baby.  Here was her schedule for me: feed him every 90 minutes day and night for at least 20 minutes per side, then feed him a specified number of ounces of previously pumped milk in a bottle to make sure he was getting enough, and then pump out the rest to keep the supply going.  So this usually left me with 30 minutes or less before I had to start the cycle over again.  During this small window of time, I could choose to eat, shower, or sleep in between feedings, but I never had time to do more than one of those three things.  I rarely showered.  I took him to the doctor for weigh-ins at least once a week, but he usually did not gain what the lactation consultant considered was enough.  And I kept up this ludicrous schedule until he was six weeks old!  I have no real memories between weeks 2 and 6 of his life.  At some point in his 6th week, I finally snapped.  I went to my husband in the middle of the night and sobbed, “I can’t do it anymore!  I’m a terrible mother!”  I was absolutely certain that everyone in the world would look at me and see me as a failure for quitting breastfeeding.  I was unable to see that hormones and sleep deprivation were probably causing me to be less than rational.  My husband later confessed that he had never been happier that I had finally decided to stop this madness.  So my baby drank formula.  And he gained weight and got fat.  And he was fine.  When AB was born, I tried again.  But by day 3, I started to notice the same symptoms – not really latching on, not much urine, etc.  So I gave up more quickly.  I was NOT going through that again!  But later I wondered – could being formula-fed have caused my child’s autism?

7. The American Academy of Pediatrics began its “Back to Sleep, Tummy to Play” campaign in 1992.  Since they began recommending this sleep position, the AAP reports that the annual rate of Sudden Infant Death Syndrome (SIDS) has declined more than 50 percent.  So of course I complied and always put my new baby to sleep on his back, despite my mother’s insistence that a baby put to sleep on its back will choke on its own spit-up.  (This never happened to my children, but it’s what she was taught when she was a new mommy.)  When SB was around 3 months, however, I started to notice that he always slept with his head turned to the left, never to the right, and it was causing his soft little head to become misshapen.  A trip to the pediatrician got him a diagnosis of Torticollis, which is the result of injury to the muscle that connects the breastbone, head, and neck.  The injury can occur during birth, but it also can occur while the baby is still in the womb.  It is not a serious condition, and we were referred to a physical therapist to correct it.  The “flat head syndrome” also has an official name, which is Positional Plagiocephaly.  The pediatrician gave me some information about purchasing a helmet for him to wear to correct the misshapen head, but insisted that it was optional, and not necessary.  The physical therapist also confirmed that she did not think the helmet was necessary.  But as a paranoid, possibly (probably) hormonal new mommy, I started researching this treatment.  It would require him to wear a fiberglass helmet for 23 hours a day for possibly several months.  Even though this seemed like an excessive treatment, we considered it.  (Well, I don’t think my husband actually considered it.  I think he was just humoring me.)  In the end, we decided to skip the helmet after I spoke to my aunt, who is a Gynecologist and whose opinion I trust.  Her advice was to keep doing the physical therapy for the Torticollis, but that the helmet was not necessary because his head would reshape itself as he grew.  And she was right, for the most part.  SB is now 6 years old, and if he is in the bathtub with his hair wet and slicked back, and the light is just right, and I squint just so, I can see the asymmetry in his head.  But I am pretty sure no one can see it if they aren’t really looking for it.  Every medical professional and therapist I have spoken to has insisted to me that that Positional Plagiocephaly is purely cosmetic, and has no impact on brain development.  But it did cross my mind – could my son’s asymmetric head have caused his autism?

8. I lived in Lima, Ohio from age 12 until I graduated from high school in a house that was less than 3 miles from a 650-acre petroleum refinery.  This refinery has been owned by a number of companies over the years, but during my time in Lima it was owned by Sohio, then British Petroleum.  There was a flame that burned on top of a tall tower at the refinery 24 hours a day, 7 days a week, lighting up the night sky.  The night sky was so bright, in fact, that the only thing I could see with my telescope at my house was the moon.  If I wanted to actually look at the stars, I had to drive somewhere else.  There was a constant cloud of white smoke being puffed into the air from several different places on the refinery’s huge campus.  I have read a little bit about the magnitude of pollution that an oil refinery produces.  I am certain that I was exposed to some amount of pollution in the air, water, and soil during my teenage years in Lima.  And later I wondered – could exposure to this pollution when I was young have caused my child’s autism?

9. Having been in the autism world now for over 5 years, I have read a lot of books about autism and met a lot of people who also have children with autism.  And when you talk about autism, you just can’t avoid the topic of vaccines.  Even though every recent scientific study published concludes that vaccines do not cause autism, there are thousands of people in this country who truly believe that their child’s autism was caused by a vaccine.  Most people who believe this report that their child had been developing normally until they received a vaccine.  Then, the child started to regress in development or lose the ability to speak.  We did not experience regression with either of our children.  I actually feel that SB’s development was behind the norm his entire life, getting more and more behind until finally the pediatrician told me that we couldn’t ignore it anymore.  I never noticed any regression in skills in either of my children.  But reading about this topic and hearing about it on the news all the time can make a parent a little bit paranoid.  What if those parents are right?  What if vaccines DID cause their child’s autism?  And if so, could vaccinating my child have also caused his autism?
Like I said, I don’t truly believe that ANY of these things caused autism in my children.  This is just a list of things that crossed my crazy mind.  In fact, now that both of my sons have a diagnosis, I can certainly rule out things like falling down the stairs while pregnant, SB’s flat head as a baby, and SB’s bad jaundice.  And having a diagnosis for both of them makes an even stronger case for just plain genetics.  It was hard, but a while back I made a conscious decision to stop worrying about ALL of these things.  There is just no point in spending mental energy on things that have no basis in scientific fact.  I guess my advice to other parents in this situation is this: if you are also having crazy thoughts, you are not alone.  It’s normal.  (I think.)

It’s easy to focus on the “why?”  Why did this happen?  Why do my children have autism?  And I do think that those are important questions, but they are not for me to answer.  Those questions are for people who are much smarter than me and have PhD’s in science.  I am happy to give money and participate in fund raisers for organizations who support autism research.  I really hope that someday scientists will figure out exactly what causes autism.  But I have decided to stop focusing on the “why,” because it can really make a person crazy.  My time and energy is better spent on figuring out how to help my two children.  I am constantly reading, going to lectures, and trying new things to try to help my guys.  The most important thing for me to do is figure out what is going to help SB and AB become independent, happy, healthy members of society who have positive personal relationships in their lives and feel that they have a sense of purpose.

My hair is moving!

Saturday, April 2, 2011 started like any other day.  SB woke at 5:30 am (Yes, he has always been an early riser.  I do think it will be the death of me!)  He woke his brother at 6:20 am, and they played independently (if not quietly) in SB’s room.  When I drug my butt out of bed at 7, SB seemed happy and energetic as always.  I fixed Eggo waffles with maple syrup and bananas, which is a favorite breakfast for both of them, and when I told him it was ready around 7:30 am, SB came running quickly.  He dug into his breakfast enthusiastically.

At 7:40 am, he stopped eating and began complaining that his hair was moving.  “Dude, you have a buzz cut,” I said.  “There is not a single hair on your head longer than 1/8 of an inch.  I’m pretty sure none of your hairs are moving.”  But he was clearly agitated, and he kept saying it.  “My hair is moving!  My hair is STILL moving!”  He started to shake his head back and forth and rubbed his hands all over his head while continuing to complain that his hair was moving.  I had never heard him use this expression before, so I tried to figure out what he meant. “Do you think your hair is too long?” I asked.  “Do you think you need a haircut?” He answered both questions with a “yes,” but seemed distracted and was not really paying attention to me or what I was saying.  I assured him that his hair was fine and encouraged him to keep eating.

Around 7:45 am, he seemed to just space out.  He was completely catatonic.  He looked straight ahead, tilted his head slightly to the left, and also leaned his body slightly to the left.  I continued to talk to him, asking him if he was alright, if something hurt, if he felt sick, etc.  At this point he did not answer any of my questions, or even look at me or act like he heard me at all.  No amount of yelling, poking, or prodding had any effect on him.  His eyes were open and he was breathing, but he did not respond to me.  I became worried, because I had never seen him act like this before.  We have certainly seen him briefly space out or lose focus, but in the past we have always been able to get his attention by calling his name.

This lasted for about 5 minutes, and then he finally started to move and shift in his chair.  I decided that he didn’t feel well and was not going to eat any more, so I told him he could get down from the table.  He didn’t budge.  So I lifted him out of his chair, and he immediately fell to the floor, right next to the dining room table.  I asked him if he wanted to move to the couch, but he didn’t answer.  So I asked again more firmly, “Do you want to move to the couch?”  He answered, “Yes,” and I realized that this was the first word he had spoken in at least 5 minutes.  He didn’t move on his own, so I picked him up and carried him to the couch.  I asked him a few questions, like “Does your tummy hurt?  Does your mouth hurt?”  (I had a sore throat that day, and wondered if he did, too, but didn’t know how to express it.)  He mumbled something incoherent, and then fell asleep on the couch.

He slept there for an hour.   Like I said, SB has always been an early riser and very energetic, and I have not seen him take a morning nap since he was an infant.  I didn’t understand what had just happened, but my husband and I agreed that it was weird.  Thankfully, the doctor’s office where we take the kids has Saturday hours, so we made him an appointment.  The doctor listened to our story, gave SB a thorough check, couldn’t find anything abnormal, and sent him home.  Although I was glad that the doctor couldn’t find anything apparently wrong, my husband and I both felt uneasy.

About an hour later, I got an unexpected phone call at the house.  It was the doctor, and he was very apologetic.  He told me that after thinking about SB’s story a little more and discussing it with a colleague, he decided that he had missed something.  He said, “I think that what you saw was a seizure.”

Something immediately clicked in my brain.  “OH!!!!!!!!!  Of course!  That’s what it was!”  I couldn’t believe I hadn’t thought of that.  I had certainly read that seizures are common in children with autism.  There are actually many different kinds of seizures, and what SB experienced is called a Petit Mal Seizure, or sometimes called an Absence Seizure.  He did not experience any of the jerky muscle convulsions of a Grand Mal seizure, which is the kind that most people think of when they hear the word “seizure.”  Although this was not great news, I felt better that at least we knew what had happened that morning.  The next step was a referral to a pediatric neurologist.

At the first appointment, the neurologist listened to my story and confirmed that what I described was almost certainly a seizure.  Some people who have seizures have a distinct feeling or some other warning sign when a seizure is about to happen, and this is called an “aura.”  This is probably what SB was feeling when he said that his hair was moving. The doctor did a number of small, easy tests on SB, such as having him squeeze the doctor’s hands, move his arms up and down in a certain way, and jump on one foot.  These kinds of tests are sometimes called a “soft exam.”  Thankfully, he didn’t find anything worrisome.  The funniest test was when he asked SB to remove his shoes, which he did obediently.  Then, the doctor opened the door to the examining room, tossed the shoes into the hall and said, “Now go get them!”  Poor SB looked at me with a surprised look on his face, as if to say, “Hey!  That was mean!”  But then he did as he was told.  The doctor explained to me that he was watching SB pick up his shoes, checking to see if he used one arm or both arms to pick them up, and if he favored one side of his body over the other.  Thankfully, SB got his shoes back and passed the test.

The doctor decided he wanted SB to come back another day to have an EEG, which is short for electroencephalogram.  This is a test that records the electrical activity of the brain.  He told me that this would require SB to sit still for about 45 minutes while 25 small electrodes attached to wires were glued to his head, and then sit still for another 30 minutes during the test.  I’m pretty sure I laughed out loud, and possibly even snorted!  I assured the doctor that there was absolutely no way this child was going to sit still for 30 whole minutes, but he just chuckled and told me that as a pediatric neurologist, he rarely got perfect data, and that he would be able to analyze whatever data he got.

SB did surprisingly well that day.  He did not panic too badly while the wires were being glued to his head, and although not perfect, he did sit still for large chunks of time.  (Thank God for the portable DVD player!)  Unfortunately, the doctor found some abnormal readings on the EEG.  He told me that the patterns he saw meant that SB would almost definitely have more seizures.  Not what a parent wants to hear.  He also suggested that we do an MRI scan to rule out a brain tumor.  MRI stands for “magnetic resonance imaging,” and it is a test that uses powerful magnets and radio waves to create pictures of the body. Since an MRI does require a person to be perfectly still for 30 minutes, this meant that SB had to be sedated.

This was some SERIOUS sedation, and a long and painful day.  We had to get up and arrive at the hospital ridiculously early (even for SB.)  I explained to him several times that he was going to get some medicine that would make him fall asleep.  They put an IV in his arm (which was a VERY traumatic event in itself), and then hooked him up to the medicine.  He moaned, “But I don’t want to go to….”  And then instantly, he was out cold.  For over 3 hours.  The actual MRI was easy, because he was so drugged.  He didn’t move a muscle.  Waking up from the sedation was another story.  The nurses shook and shook him until he woke, and then asked him to eat some crackers and juice.  He ate a little, then vomited a lot.  Thankfully, I had brought a change of clothes.  They gave him some anti-nausea medicine, and he went back to sleep for another hour.  They woke him again, and again he ate a little, then vomited a lot.  Thankfully, I had brought a change of…oh wait, we already used those.  So the nurses gave him some hospital pajamas to wear.  At this point, it was getting close to 4:30 pm.  We had been at the hospital since some ungodly hour of the morning, and we were the last ones in the sedation center.  The nurse told me that they couldn’t give him any more of the anti-nausea medicine, that the nausea would definitely be gone by bedtime, and then sent us on our way, pushing my still-sleepy boy to the car in a wheelchair.  As soon as the nurse left us in the parking garage, he vomited again.  Two more times in the car.  Oh, and do you remember what time I said it was?  That’s right – WDC rush hour!  It took us over 90 minutes to get home that day due to a car accident on the beltway.  I was glad that he was still so groggy that he just slept soundly and didn’t seem to mind all the vomit.  I felt terrible, but with no clothes or even towels, what could I do?  (Aside from roll the window down, of course.)

Turns out he continued to vomit the entire next day.  I took him back to the doctor, but they couldn’t do anything except wait for the sedation medicine to work its way out of his system.  I knew he was finally feeling better around dinnertime when he asked me if he could have 4 bananas!  I hope we never have to sedate him again, because that was quite an ordeal.  I saved the paper that listed the name of the medication they gave him and how much, so that if we ever need to sedate him again, I can say, “This is what he had last time, and it was WAY too much!”  It’s amazing to me that even 10 months later, SB clearly remembers having the seizure.  He has an extraordinary memory when it comes to dates, and if you ask him, “What day was your hair moving?” he will say, “April 2” with no hesitation. 

Thankfully, the MRI showed no abnormalities.  This was great news, but where did it leave us?  The doctor was still certain from what he saw on the EEG that we will see more seizures in the future, and suggested that we put him on anti-seizure meds.  Charlie and I discussed this, and decided against it.  We decided that dealing with the side effects of medications was just not worth it when SB has only had one seizure.  If he has more, we will consider it.  But for now, we’ll just watch and wait.

Facing an Autism Diagnosis: Getting Started in 3 Easy Steps

            I originally wrote this article about 3 years ago, hoping to get it published in a magazine.  It has since been rejected by at least a dozen autism and general parenting periodicals.  Maybe it will do the most good posted here.  Anyway, the intended audience is the parent who has just recently learned that their child has autism. 

            Like all new mothers, I was sure that my perfect baby boy was adorable, sweet, and certainly very smart!  But by the time he was 18 months old, my husband and I were getting very worried about him and his development.  He had not yet spoken a word, and he neglected most of his toys, choosing to pass his time by repeatedly opening and closing the bathroom door.  When he was diagnosed with autism in November of 2006, I felt an enormous range of emotions – sad, angry, frustrated, worried, scared, confused, jealous, and nauseous, just to name a few.  I was also pregnant with my second child at the time, so I am certain that my raging hormones were only making me feel worse.  But the word that best describes how I felt was overwhelmed.  Of course, I wanted to do everything possible to help my child, but there are so many different treatment options for autism out there.  If you simply do an internet search for “autism,” the volume of information you will find is enough to make any well-intentioned Mommy or Daddy feel dizzy trying to sort it all out.  There is so much to do.  What do you do first?

            Looking back on where my journey has taken me so far, I can now identify the three things that helped my son the most in those initial months.  Because I wanted to help him as quickly as possible, I remember wanting to try everything that I read about in that early stage.  Thankfully, I had some smart people working with my son from the start who encouraged me to slow down and be realistic.  It is very important to only try one new thing at a time.  It can take weeks or even months to determine if a treatment is working, and if you introduce a dozen new things into your child’s life at once, you will probably make his or her little head explode!  I am no expert on autism or child development – I am just a Mom.  But here are the first three things that I recommend you do when you learn your child has autism:

1 – Read about autism.

            The more you learn about autism, the more confident you will feel about the decisions you make for your child.  But even this one suggestion can seem overwhelming.  There are more books, journals, and websites on autism than you can shake your proverbial stick at.  You cannot possibly read them all.  There is a lot of great information out there, but a lot of misinformation as well.  Be wary of the internet in the early months, because it is often difficult to determine if the information on an unfamiliar website is accurate.  For your first read, I recommend one of the following books:  Let Me Hear Your Voice: A Family’s Triumph Over Autism by Catherine Maurice (Ballantine Books) or Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life by Lynn Kern Koegel, Ph. D. and Claire LaZebnik (Penguin Books).   Both of these books contain positive and uplifting stories of children who learn to shed the symptoms of autism through hard work and persistence.  Both books also champion the benefits of ABA Therapy, which leads me to suggestion Number 2:

2 – Get ABA Therapy for your child.

            Once you get immersed in the world of special education, you will learn all sorts of new acronyms!  ABA stands for Applied Behavioral Analysis, and is a widely-used, scientifically-proven treatment option for autism.  The fundamental principle of ABA is to shape behavior by breaking down each new skill into the most basic of steps, and then teaching each step to the child, using a system of frequent rewards for motivation.  The process is tedious – but it works.  ABA Therapy can be done in a school setting, in the home, or in a therapist’s office.  My son is lucky enough to have received a combination of all three.

            Unfortunately, you cannot just walk into a therapist’s office and say, “My child needs ABA.  Can you start tomorrow?”  Setting up services takes time, and can be incredibly frustrating.  But do not give up – it is definitely worth it.  Four months passed between my son’s diagnosis and his first ABA session, and they felt like the longest four months of my life.  First, I had to go through the complicated process of figuring out exactly what my insurance covered.  Then, I had to find a therapist with availability.  I got put on a number of waiting lists before I found someone who I liked and had space for my son.  Next, the therapist had to do a number of assessments on my son before he could develop a program that was appropriately tailored for him.  Because my little boy was non-verbal, very non-compliant, and had lots of tantrums at this stage in his life, I remember having to return to the office on three separate occasions before the assessments were completed.  Let me remind you that I was pregnant throughout all of this!  I remember the therapist joking that he was going to make me my own copy of the office restroom key since I was constantly borrowing his.  Just thinking about it now makes me tired, because it was such a difficult time.  But once therapy got started, we began to see positive results very quickly.

            As I stated earlier, there are an endless number of treatment options available for children with autism.  Some may seem normal, and some may seem downright wacky or even dangerous.  Some may promise you a “miracle cure,” and I am sorry to say there are not any miracle cures out there – at least not yet.  However, do not be discouraged from trying different treatments, as long as you are sure they are safe for your child.  I once read that autistic people are like snowflakes – no two are alike, and therefore the same treatment will probably not have the same effect on each individual.  By all means, try new things!  And if you find something that helps your child, then good for you.  But try new things in addition to ABA Therapy, not instead of ABA Therapy.  ABA should be the cornerstone of your child’s treatment plan, because it really does work.  And lastly, only implement one new treatment or therapy at a time, because that is the only way you will be able to tell how well it is really working.

            Step Number 3 is the easiest of all:

3 – Show your child Baby BumbleBee DVDs.

            I promise that I am not getting paid by the Baby BumbleBee Company to endorse their product.  I am just a huge fan.  Watching these shows not only got my son talking, but it got him excited about talking!  I will never forget the day that my little boy was watching a DVD in the den, and in the middle of the show, he ran to me in the kitchen as fast as his little legs could carry him.  He looked me right in the eye and shouted “Hippo!” with more enthusiasm than I had ever seen in his face before.  After sharing his new word with me, he immediately ran back to the den to catch the next word.  Since I had wondered for many, many months if my son would ever learn to speak, “Hippo” became my new favorite word.  Start with the Bee Smart Baby Vocabulary Builder.  There are 5 volumes, so that should be enough to get you going. 

            If the cost of the DVDs is more than you want to invest at first, check to see if your local library has them, or try to pick up used copies online or at consignment sales.  I do not think you will be disappointed.

            My son’s treatment has not stopped with these three steps.  I am still reading, still trying to find new methods and ideas to help him, and am still working with him daily on a variety of skills.  We have faced many challenges together, and I’m sure there are still many more challenges ahead.  Learning that you have a special needs child is hard.  But if you find yourself starting out on this journey, I hope that focusing on these three things will help you feel less overwhelmed than I did when I started.  Then you can feel a bit calmer, more focused and more informed while you figure out what to do next.