It Gets Better – The Anniversary Edition

Today is an anniversary, but not the kind of anniversary one usually celebrates.  Today, November 8, is the 7th anniversary of SB’s diagnosis of autism.  SB has come SO far since then.  He has made significantly more progress than the Developmental Pediatrician predicted he would on that gloomy day in 2006.  Also significant is how far I have come as a parent.  Seven years ago I was a depressed, emotional, miserable, incessant worrier who thought that nothing in my life would ever be happy again.  Kind of selfish, really, since this diagnosis didn’t actually happen to me!  Since then, I have become a confident and knowledgeable advocate for my children and sometimes even a giver of advice and comfort to other parents.  I have made huge changes in my attitude, and in fact, my entire worldview.  But it didn’t happen overnight.

I kept a journal during the period after SB’s diagnosis.  I was pregnant and had gestational diabetes, and therefore I couldn’t turn to alcohol OR sugar to feed my depression, so I turned to writing.  (And LOTS of bubble baths!)  The journal is an ordinary-looking  notebook full of deep darkness and despair.  Reading through it last night, 7 years later, was sobering and confusing.  I remember that time.  I remember that sad, dazed, miserable woman who wrote those words.  I remember how frustrating our life was then.  But I don’t feel like I am the same person who scribbled all of that stuff down on paper.  SB is certainly not the same person being described in the journal.  Everything is so much different now.  And better.  Absolutely BETTER.  I thought I would share with you a few quotes from the journal and explain how they reminded me how much progress SB and I have both made since then.

1 – Proof that I definitely needed Ambien:  11/19/06 – “Every single time I wake up in the night (which is a lot of times) it hits me again like a ton of bricks – Oh, God!  We have an autistic child.  It wasn’t a dream – this is really happening.  And Oh, God!  We’re also having another baby.  Then I can’t get back to sleep.”

2 – Reminder that the beginning of an autism diagnosis is very time-consuming, but that it isn’t always like this:  11/20/06 – “I am also very busy with paperwork about him – Tricare, preschool, etc.  Lots of forms to fill out and copies to give to this or that person.  And taking him to the doctors takes a lot of time, too.”

3 – Proof that I definitely needed Prozac:  11/23/06 – “And getting through the day is hard.  Taking my next breath is hard.  Getting up off the couch is hard.  Being with SB is hard, especially when I am alone with him, because I am reminded constantly about all the things he cannot do that he should be doing at his age.  But somehow I keep taking breaths.  Somehow, I keep getting out of bed and getting up off the couch.  I really don’t know how, but I do.”

4 – Reminder how distant and solitary SB was at this age, and how much he’s changed since then.  Now I actually refer to him as my Autistic Extrovert:  12/3/06 – “Is it always going to be like this?  Is he always going to be frustrating?  Is he ever going to want me in his life?  As it is now, when you put him in his bed, he wants to be alone.  If you try to read him a story, he cries.  If you try to sing him to sleep, he pushes on you to make you leave the room.  He doesn’t want his mother.  He would rather be alone, and that makes me terribly sad.”

5 – More Prozac proof, I think, because the joy DID come back:  12/15/06 – “I feel like I’ve been cheated out of experiencing what parenting is supposed to be like.  Children are supposed to be fun at SB’s age (21 months).  They are supposed to be learning and experiencing life and sharing what they learn with their parents.  They are supposed to give their parents joy.  All I get from SB is anxiety, worry, and frustration.  When will I get joy from him again?”

6 – Reminder that Christmas, and all holidays, have improved SO much:  12/23/06 – “…for a lot of the day he seemed very distant and disengaged.  It is so hard to get him interested in anything – he just wants to wander from room to room and stare at the lights.  It’s a little creepy and very sad.  I am just so sad.  Opening Christmas present was again very sad.  SB just has no interest in any toys whatsoever.  Charlie wanted to play SB’s favorite CD to keep him in the room with us, which worked, but I couldn’t interest him in opening anything.  He just stared at the CD player the whole time we opened gifts.  Will we ever be able to bring him out of this dazed state?”

7 – Reminder that toys and books have gotten so much better, and that he really is interested in other children now.  (See above: Autistic Extrovert!):  12/24/06 – “We tried to interest him in toys, but we couldn’t seem to interest him in anything at all.  No toy or book, new or old, would grab his attention.  I just can’t express in words how sad it makes me feel that my child doesn’t know how to play.  He doesn’t understand what to do with toys or with other children.”

8 – Reminder that SB’s attention span is so much better now:  12/30/06 – “SB sat at the art table for 10 whole minutes!  He doesn’t do anything for that long! Normally no single task or activity lasts more than 1-2 minutes.  And he was not strapped in – just sitting on the bench.  He scribbled on plain paper with crayons.”

9 – Reminder that SB’s diet is better now:  I can’t give you just one quote about this.  Every single page of the journal discusses what SB did or did not eat that day.  Why was I so obsessed about that?  He was a terribly picky eater as a toddler, and it seemed to distress me at every meal.  SB’s diet has expanded drastically in the last 7 years.  Just last night I made a burrito bake casserole for dinner, and SB cleaned his plate with minimal complaining.  (What are we having for dinner?  Burrito bake casserole.  Is that what *I’M* having?  Yes.  Do I *HAVE* to eat that?  Yes.  Sigh.)  But there was no more arguing after that!

Of course there is other stuff in the journal that is NEVER going to see the internet.  Dark, embarrassing, scary stuff.  But that’s what a journal is for, I guess:  to let out all the crazy, scary thoughts so that they don’t drive you mad.  And no one ever has to see them if you don’t want them to.

So now I need to explain the meaning behind the “It Gets Better” title.  About a year ago, I bought the latest album by the band Fun. and put it on my iPod to listen to when I work out.  (I find the punctuation in their band name annoying, but am trying to honor the name they have chosen and use the period!)  When I heard the song “It Gets Better,” I immediately applied it to my own life and thought about what a great theme song it would make for autism parents.  Then I did a little research and learned that the song is actually an anthem for the support of gay rights, and the message is for homosexual teens and young adults: Coming out is hard, but it gets better.  When I realized that it was someone else’s theme song, I let it go and stopped thinking about it.

Then last month, I heard the song again on my iPod during a run, and thought, “Why not?”  Why can’t it be an anthem for more than one cause?  Of course the gay rights movement is important, and it is certainly necessary to support young adults learning to embrace their homosexuality, but why can’t we autism parents use the song, too? 

So today I celebrate this anniversary.  I celebrate that this road is hard, but it gets easier the longer you travel it.  I celebrate the changes in myself – that I am a more compassionate person, and a BETTER person, because of the experiences I’ve had these last 7 years.  I celebrate the fabulous people that have come into our lives that we never would have met if we had never been put on this autism path.  I celebrate both of my sons, their unique, quirky, brilliant little minds, and ALL of their successes, no matter how big or small.

I celebrate because it gets better.

Spiders, the Stinky Cheese Man, and a Magic Pebble

          This post is a follow-up to one I wrote over a year ago called Dum ditty dum ditty dum dum dum.  To briefly summarize, kids with autism often don’t want to be read to and have little interest in books.  This was particularly true for SB, and it absolutely broke my heart.  When you love children’s books like I do, and want to read to your child, it hurts more than I can describe when that child will not tolerate being read to.  Thankfully, with a lot of patience, both guys have gradually become a little bit more interested in reading and in listening to a book.

          Although this area has slowly improved over the years, it has certainly never been “normal” in either of my guys.  A long time ago, my husband and I established that reading one book was part of the bedtime routine, so that one book is generally tolerated and usually enjoyed.  But if I try to read to them or ask them to read to me at some other point during the day, it is usually met with resistance, particularly from SB.  AB went through a period where he liked to be read to, but only if it was a book about Thomas the Train.  Both my husband and I will freely admit to falling asleep mid-sentence during Thomas books on multiple occasions.  Those Thomas books are just so damn DULL!  And all of those personified trains act like bratty toddlers!

          Today I’d like to share a few victories we’ve had recently in the reading department that make me happy.

          A big improvement in the “willingness to read” territory came last summer when I enrolled both guys in the summer reading program at our public library, where kids could earn a coupon book after reading at least 15 books.  Neither of my kids fully understood what a “coupon book” was, but they decided to embrace the challenge!  SB was in the middle of a weird obsession with insects of all kinds, particularly spiders, so I decided to introduce him to some nonfiction books about bugs.  He was thrilled to have facts and statistics to memorize and detailed, gross pictures to look at.  It literally took the entire summer, but they both finally read 15 books.  In the moments where they didn’t really feel like reading, I could tell that both were motivated by a desire to get to 15, and also by wanting to get to 15 before the other one did!

Like most kids with autism, my guys tend to fall in love with one book, movie, or TV show, and then are not interested in branching out at ALL.  To prevent myself from dying of boredom, a lot of nights I go into one of their rooms to read a bedtime story and say, “Hey!  We’ve never read this!  It’s one of my favorite books!  Let’s read this tonight!”  I am ALWAYS met with resistance.  “No!  I want to read (insert title here of the story that has been read every night for the previous 4 weeks straight.)”  Some nights, because I am tired, I give in.  Some nights I fight it, insist on reading a new story, and end up reading to a fidgeting, stimming, complaining child that isn’t paying a damn bit of attention to me at all.  But because I am a glutton for punishment, I keep trying.  One night last week, on a whim, I pulled off of the bookshelf “The Stinky Cheese Man and Other Fairly Stupid Tales” by Jon Scieszka.  This is a special book, because it is signed to SB by the author and was given to him years ago by a friend of my husband’s who loved reading the story to his own son.  I convinced AB that we should read this, and although he whined and complained, he settled down when I began to read.  And then, he started to get into it.  And he started to laugh.  By the time I got to, “Well, as it turned out, he was just a really ugly duckling.  And he grew up to be just a really ugly duck.  The End,” AB was laughing so hard he fell out of bed!  I felt triumphant!

Recently a friend posted on Facebook a list of “50 Books Every Parent Should Read to Their Child.”  As someone currently studying to be a children’s librarian, I was mortified to realize that I had only read about half of them, so I promptly went to my public library to check out a few.  Last Saturday morning, the guys were doing their usual weird, stimmy play that they always do when left to themselves, and I decided to engage them.  “Hey!  Let’s read a story!”  We don’t read stories in the morning.  We read them at bedtime.  This is not our normal routine.  The resistance and complaining started immediately.  “Do we HAVE to read a story?  I don’t wanna read a book!  I just wanna play now!”  Etc., etc., etc.  I’m not sure why, but in this moment, I decided to push.  “Yes,” I said.  “We are reading a story right now.  Then we can play a game.  But first I am going to read you a story.”  They grumbled, but joined me on the sofa.  I grabbed “Sylvester and the Magic Pebble” by William Steig from the pile of library books and began to read.  I didn’t know this book at all, and hoped that this scenario I had created wouldn’t turn into a disaster.  SB stuck his head under a pillow, so I reminded him to “listen with your whole body.” (Thank you, Social Thinking!)  He sighed, removed the pillow, and began to listen.

By the time we got to the part where Sylvester’s parents were eating a nice picnic lunch on top of Sylvester the rock, both guys were intrigued.  SB started to pull on the pages of the book to look ahead.  “Is he gonna turn back into a donkey?” he wanted to know.  (Spolier alert: he does.)  I was thrilled that we made it through the entire book, which is not short, and that by the end they seemed to like it.  We went on to play a board game as promised, and Sylvester wasn’t mentioned anymore.

At bedtime, I asked SB, “What book do you want to read tonight?”  He immediately answered, “Sylvester and the Magic Pebble!”  YES!!!!  Not only did he like a new book well enough to let me finish it, but he also requested it again later.  It’s so HARD to introduce new things to these guys, because the resisting and complaining is so persistent and annoying.  But when a new thing sticks, it’s so incredibly satisfying!

Later I asked SB, “If you had a magic pebble and could wish for anything in the world, what would you wish for?”  He thought about it for a while, and then said, “I’m thinking…I would like my own Kindle.”  Now, I know that he is thinking that he would use his Kindle to play Angry Birds, Cut the Rope, and Plants vs. Zombies, but I can hope that he would also use it…to read new books.  Hey, a girl can dream!

Hana, Dul, Set, Net, Dasot

In the spring of 2011, I found myself browsing flyers and websites, trying to come up with some productive things for the guys to do over the summer.  SB was 6 at the time, and had been receiving ABA therapy for 4 years and was making good progress.  He was finishing up his kindergarten year in a mainstream classroom, and it had gone fairly well, much to my relief.  AB was 4, and did not yet have a diagnosis.  He was doing great in preschool, and at this time we had no suspicions that an autism diagnosis was yet to come for him.  I heard about an Adapted Tae Kwon Do program in our area for kids with special needs, and decided that might be a cool activity to try.

I enrolled SB in the Adapted class, and asked if his younger brother could join the class, too.  I didn’t think he needed the accommodation at the time, but he was so little that I was hoping it would be OK.  Thankfully, the Tae Kwon Do studio obliged.  I remember thinking at the time, “Well, SB did so fabulously in a regular kindergarten class, I bet he won’t need the Adapted Tae Kwon Do class for very long.  We’ll do the Adapted class over the summer, and by the time school starts, he’ll be doing so well that we’ll be able to move him to a regular Tae Kwon Do class.”

HA HA HA HA HA HA HA HA HA HA HA HA HA HA!!!!!!!!!!!!!!!!!!!!!!!!

Boy, was I naïve and stupid.  Two and a half years later, both boys are still enrolled in the Adapted class.  And it has been absolutely wonderful for them.

The first person that I met at our initial Tae Kwon Do class in May of 2011 was RM, who has a triple-whammy of credentials for teaching this class: She is a Tae Kwon Do instructor, she is a Board Certified ABA therapist, and she also has a son with autism.  I immediately knew that the guys would be in good hands.  I sat down to watch the class, and slowly became horrified by what unfolded.  Neither of my guys seemed to be able to participate or pay attention at all to what was going on in the class.  Both needed constant redirection, could not focus on anything, and were repeatedly wandering the room and having to be led back to the group.  My heart sank.  This was not the first time we had tried an activity that had failed, but it WAS the first time that an activity specifically for special needs children was a bust.  The other kids in the class needed occasional redirection, but not like my two.  I think I probably frowned and sighed a lot, and was ready to tell RM, “thanks anyway for trying” at the end of the class.

She came straight to me when the class was over and said, “They did great!”  Huh?  Did she forget which kids were mine?  She assured me that none of the kids in the Adapted class participate well the first day, and that it takes all of them time to figure out the routine.  “Bring them back next week!  I promise, they’ll get better.  And in a few months, another new kid will come to the class and will be unfocused and wander off a lot.  Then you’ll realize that yours looked like that at first and you’ll see how much better they are doing.”  She gave me a copy of a visual schedule of the structure of the class, which SB was thrilled to have, and sent us on our way.

We decided to come back.  And like ALL things with my children, the progress was so slow that we didn’t really notice it at first.  But RM was right.  As the months rolled on, new kids joined the class, and it reminded me that mine were not wandering off so much anymore.  My guys were actually starting to participate a good portion of the time.  They had good days and bad days, but they were generally engaged in the class.  And most importantly, they LIKED it!  So we kept going.

Time went on and both guys continued to make progress in Tae Kwon Do.  Painfully slow progress, but by now we were used to that.  That’s the only kind of progress we get here at the Burts house!  AB got his diagnosis, and I realized that he had been fitting right in with the other students in the class all along.

In the Adapted program, students earn new belts after attending a certain number of lessons.  They don’t have to do anything special to earn their belts like the students do in the regular Tae Kwon Do classes.  The belts look different (striped rather than solid) but my guys didn’t know the difference, and were happy every time they got a new one.  We slowly went through the entire set of Adapted belts, and then about 6 months ago, (2 years after our first class) RM approached me about putting them into the regular belt track.  They could keep coming to the Adapted classes, but would start earning the same belts that the regular students were earning.  There were already several Adapted students doing this, so we decided to give it a try.

This meant that the guys would have to stay after class for a few minutes each week and work one-on-one with an instructor to see if they had mastered certain skills.  When the skills were mastered, they got a piece of tape on their belt.  When they got three stripes of tape, they could try for the next belt at a formal belt testing ceremony held only once a month.  At first, staying after class didn’t go well at ALL.  Both guys were so enthralled by watching the next class that they just could not focus on what their instructor was asking them to do.  (In hindsight, this is somewhat my fault.  I should have explained to them better what was going on, since this was new to them and they didn’t understand why they had to keep working after the class was over.)  I was starting to wonder if we had made a mistake to even try this, when I finally asked if the instructor could take them into a different room to evaluate them.  I thought that maybe if they weren’t so distracted by the next class, they might be able to show what they had learned.  This made a huge difference, and they both eventually earned their 3 stripes of tape, a half-stripe at a time every couple of weeks.  It was incredibly tedious.  But with 3 full stripes earned for each of them, they finally got to participate in Belt Testing Day!

In addition to showing off several punches and kicks, the guys also had to memorize a few terms and definitions.  My smart husband made up songs to help the guys remember the definitions by putting them to the tune of Happy Birthday and Frere Jacques.  This worked brilliantly, and the memorizing was easy.  Our only worry was that they would sing the answers during the belt test.  And then I thought that might not be so terrible!

On the day of the test, there were 7 kids lined up on the mat to test for the Advanced White Belt – 6 boys and one very dedicated, Type-A little girl who did everything perfectly.  I’d guess that they were all between 6 and 8 years old, except for one adorable, short little guy who couldn’t have been more than 4.  My guys were the only ones wearing Adapted belts, which were white with a red stripe down the middle.  Everyone else was wearing the standard plain, white belt.  Knowing that this test was now out of my hands and that I couldn’t help them anymore was a scary feeling.  I have played the clarinet in front of thousands of people on many, many occasions, yet I really can’t remember ever being this nervous before.  I stood in the corner of the room with my camera, wondering if I should even be taking pictures of this.  What if they didn’t pass?  Would I want to delete all the pictures?  Or worse, what if one passed and one didn’t?  What kind of drama would THAT create in my house?  As I was thinking all of these things, I heard someone say, “Breathe!”  “What?” I asked.  “Are you talking to me?”  “Yes!” exclaimed one of the instructors.  “You looked like you had stopped breathing!”  Oh.  Maybe I had.

Did they perform perfectly for the test?  Oh, HELL no!  But none of the kids did.  (Except for Miss Type-A – she nailed it!)  I think that AB kicked with the wrong leg every single time.  Both of them kept forgetting to look in the direction of their punches, even after being reminded repeatedly.  I think I was still not really breathing regularly until I saw Master L cut off 7 pieces of tape.  He was going to pass them all!  I was so relieved.  And the guys were thrilled!  SB showed his excitement the way he always does – by jumping up and down and shouting loudly at inappropriate moments.  “I got my fourth stripe!  I got my fourth stripe!”  This didn’t seem like the time to remind him to use an indoor voice.  I noticed later when I looked at their score sheets that they didn’t get stellar grades – SB got a B- and AB got a C.  But they passed!

I also learned from their score sheets that we had sewn the Korean flag patch on both of their uniforms upside-down.  Oops.  I need to get out my needle and thread and fix have my Mom fix that the next time I see her.  (Who am I kidding?  I can’t sew!)

As I looked around the studio at all the families, I thought about something a friend said to me a few months back.  I was talking with him about how jealous I still get of other parents with their typical kids doing typical activities in a seemingly effortless manner.  I wish I didn’t get so jealous, but I do.  I see others posting pictures on Facebook of their kids being successful at soccer, or baseball, or piano, or gymnastics, or whatever.  And I just wish that things weren’t so damned HARD for my kids.  And he said, “But doesn’t that make their successes that much sweeter?”  As I looked around at all the kids testing for new belts, and at their parents who had brought them, I realized that yes, this success WAS sweeter for my guys than it was for any of them.  I’m not saying that those other kids didn’t work hard and deserve their success, and I’m not saying that their parents aren’t proud of them.  But those parents didn’t have to wait 2 and a half YEARS for their kids to earn the first belt.  And when it takes that long, and when you have to overcome all the things my guys have had to overcome, it really does feel pretty freakin’ sweet.

I hope this story will inspire others with autism (or others who parent someone with autism) that children with ASD really can do anything if they work hard and have the right supports.  However, it’s going to be on their own timetable, because that kind of sweetness just can’t be rushed!

Stretching before the test began
Stretching before the test began

 

Taking our test!
Taking our test!

 

SB getting his score sheet from Master L
SB getting his score sheet from Master L

 

AB getting his 4th stripe from Master L
AB getting his 4th stripe from Master L

 

 

SB mid-punch during the graduation ceremony performance
SB mid-punch during the graduation ceremony performance

 

SB coming to receive his new Advanced White belt.  He got sent back to his seat to try again because he forgot to say "Yes, Ma'am!" when his name was called.  He wasn't the only one!
SB coming to receive his new Advanced White belt. He got sent back to his seat to try again because he forgot to say “Yes, Ma’am!” when his name was called. Don’t worry – he wasn’t the only one!

 

Group shot of all the graduates.  I like the slogan on the wall.
Group shot of all the graduates. I like the slogan on the wall.

 

If you are in the Northern Virginia area and want to check out the Tae Kwon Do studio we go to, here is their link:

http://www.leadbyexampletaekwondo.com/

Conference Time

Let’s face it – much of the time, people go to professional conferences to see old friends and drink beer, right?  That’s the reason I go to music conferences!  But last week I actually went to a professional conference in the hopes that I would learn something.  (Crazy, I know!)  And I wasn’t disappointed.

Several months ago, I saw that there was going to be a Future Horizons Autism Conference in Richmond, Virginia, and that Dr. Temple Grandin was going to be the keynote speaker.  If you are reading this blog (and have NOT been living under a rock for the last few years) then you probably already know who Temple Grandin is.  But just in case you don’t, she is the first person with autism to become an accomplished professional, and to become famous because of it.  She has a PhD in animal science and is a professor at Colorado State University.She is also a bestselling author, autistic activist, and consultant to the livestock industry on animal behavior.  In 2010, HBO made a movie about her life starring Claire Danes.  The movie is very well-done, and if you haven’t seen it, you absolutely need to.  And I mean today.

When I realized that Temple Grandin was going to be speaking at a conference a 90 minute drive away from where I live, I knew that I needed to try to go, because hearing her speak might be a once-in-a-lifetime experience.  Thankfully, I had no performances or rehearsals that day, so getting the day off of work was easy.  It probably have been more fun to go with a friend (see paragraph #1 above about going to conferences and hanging out with friends and drinking beer) but I couldn’t find anyone else that was available that day.  So I set my alarm clock for 4:30 am (UGH!!!!) to get in the car by myself and head south on I-95 toward Richmond.

The drive to Richmond was fairly smooth, which is a good thing, since I was barely awake.  Although at one point, a rock flew up and hit the windshield of my minivan, leaving a big crack.  (Here’s hoping the crack doesn’t get any bigger.)  I arrived at the conference almost an hour before it started, which left me both relieved that I didn’t hit much traffic and annoyed that I could have slept a whole hour longer. 

Temple Grandin was the big draw to the conference, but she only spoke for about one-fourth of the day.  The other three-fourths of the day were filled by a speaker named Dr. Jed Baker, who is the director of the Social Skills Training Project, a private organization serving individuals with autism and social communication problems. He also directs social skills training for Millburn Public Schools in New Jersey.  He has authored several books about developing social skills and handling problem behaviors in children with autism.  I was pleasantly surprised by how much practical advice I got from hearing his presentation, and I intend to buy several of his books.  (That I will definitely read.  In my free time.  Ha ha ha ha ha!!!!)  OK, I’ll TRY to find time to read them.  But until I get the chance to read his stuff, I thought I would list here some of the insights that I got from both speakers.

From Dr. Baker:

1) Always have hope.

I have attended a lot of conferences, workshops, and lectures about autism, some that were full of practical advice and some that were not, but I don’t think I’ve ever heard a clinician say this before.  He talked about how important it is to always have hope that you can make a bad situation better by trying new strategies and applying them consistently.  And if one strategy doesn’t work, you can always try another one.  Never lose hope that something will help.  He stressed that high expectations always lead to better outcomes.  This was his first point of the day, and I liked the positive start to the conference.

2) You will not be judged by how you control other people, but by how you control yourself.

Dr. Baker told a story about how embarrassed he was when his own children were acting out in a grocery store, since he is a nationally-known behavior expert!  And this story led him to explain that people generally will not be judging you out in public when your children are having a tantrum or are being bratty.  Oh, there will always be a few jerks out there who may judge you, but the general population is remembering when their own children were that age and are just glad they don’t have to deal with tantrums anymore.  What people will definitely remember, however, is if you lose your cool and get angry.  All kids have tantrums.  So stop worrying about what other people are thinking when your kid flops on the ground screaming in Wal-Mart, and remember to keep calm as you deal with the situation. 

3) Helping someone with social skills can usually be boiled down to one question: What is this person doing too little of, or too much of, to prevent his success in a social situation?

Sometimes I feel overwhelmed by how many things I need to teach my boys.  Have you seen the 2009 movie “Adam” starring Hugh Dancy and Rose Byrne?  (If not, you absolutely need to.  And I mean today.  Unless you STILL haven’t seen the HBO movie about Temple Grandin.  Then see that one today, and watch “Adam” tomorrow.)  “Adam” is about a 29-year-old man with autism and his first attempts at dating.  The movie is very well-written and well-acted, but it left me with horrible knots in my stomach.  When the movie was over, I started to panic about how much I still need to teach my guys about interacting with others, particularly the opposite sex, knowing that so much of the social world will not come naturally to them like it will to everyone around them.  Thinking about teaching social skills the way that Dr. Baker phrased it here makes it seem a lot less overwhelming.

These few points only scratch the surface of all of the great stuff I learned from his presentation.  He gave a lot of good advice about many other topics as well, such as how to motivate children who just aren’t interested in being helped, and also about how to give peer sensitivity training to typical kids who are around children with autism.  But I need to move on to a few of my favorite key points from Dr. Grandin’s presentation:

1) Stretch your kids with autism.

Dr. Grandin said this several times in her presentation, and then said it again during the Q&A session when someone asked her what was the one thing her mother did for her that helped her the most.  “She stretched me.”  Dr. Grandin talked a lot about how her mother pushed her to learn to play turn-taking games as a child, pushed her to learn manners, and pushed her to get a job as a teenager to learn job skills.  It made me happy to hear her say this, because sometimes I wonder if I push my kids a little too hard.  Some autism advocates insist that we parents should accept our kids for who they are and stop trying to make them into something they’re not.  I struggle with this concept every single day – how much should I accept my children for who they are and how much should I push them to be and do more?  If I simply accept them for who they are, how in the world will they develop the skills to create a meaningful life for themselves as adults?  Hearing Dr. Grandin repeatedly say that we need to be stretching our autistic children beyond their comfort zones made me feel like I just might be doing something right as a Mom.

2) Make your kids get a job.

She stressed how important it is to learn job skills.  She strongly encouraged parents to make their kids do something as teenagers – a paper route, dog walking, cleaning, etc. – that will teach them the value of working and how to be a good employee.  She said that she has seen far too many smart and capable 20-year-olds with autism who sit in their parents’ basement all day playing video games because they don’t have any job skills or work experience and never learned how to work.  Since my kids are only 6 and 8, this advice isn’t really relevant – yet!  I will store it away for a few years and find some jobs for them to do when they hit the teenage years.  Won’t they be thrilled? 

3) Develop and encourage shared interests.

Dr. Grandin talked about how much being involved in clubs relating to her interests helped her socially.  For example, she loved horses, and when she was in the barn and around others who loved horses, she wasn’t teased nearly as much as she was during the school day.  This is something I already try to do, and plan to continue to do, with my own kids.  It was nice to hear her say it, though, to again make me feel like I’m doing the right things as a parent.

Mostly what I got out of Dr. Grandin’s presentation was inspiration.  Here is someone who has the same debilitating condition as my children, and look at what she has accomplished!  If she can create a successful and happy life for herself, than so can my guys.  I’m so glad that I go to attend this conference and also that she was willing to take some time to sign books.  I got her to sign my copy of her latest book, “The Autistic Brain,” and also got a picture with her.  It was a very valuable and memorable day, even without friends and beer!

grandin

Trying to understand

I know that many who heard the story Thursday of Kelli Stapleton and her autistic daughter Issy will not understand.  I can just hear the thoughts.  “How could someone DO that?  How could someone try to kill their own child?”  I don’t know Kelli or Issy, but I think that I do understand.  And it’s not about love, or parenting, or right and wrong.  I think it’s about depression.

You can read the news story here: http://record-eagle.com/local/x312422563/Charges-loom-for-Benzie-woman-in-murder-suicide-attempt

 After SB’s diagnosis, I fell into a fairly deep depression.  (This was not the first time I had dealt with depression, but it was definitely the worst.)  I was pregnant and diagnosed with gestational diabetes that my doctor told me would become permanent.  (It didn’t.)  I worried endlessly about what life held for my 2-year-old son, and was drowning in paperwork and insurance red tape to get him help.  I also worried endlessly about my unborn baby, and whether or not he would have autism as well.  (He does.)  As if all of that wasn’t enough, we also had a cat that was very ill and was vomiting daily.  (Always on the carpet.  Never on the linoleum.)  Eventually we had to put her down.  This also just happened to be the time that we had decided to remodel our kitchen, so my home was under construction and the kitchen was not functional at all.  SB was refusing to eat pretty much everything at this point except for chicken nuggets and Goldfish crackers.  We wanted to encourage him to try new things, but there was nowhere to prepare food, and his behaviors were too turbulent for us to eat in a restaurant at all.  As you can imagine, adding a newborn to the mix really didn’t make life any easier, so things just got even worse after AB was born.  So yeah, it kind of felt like life was kicking me in the ass from all directions.

When it felt like I just couldn’t handle one more minute, I formulated a plan.  Thankfully, my plan was not as violent as Kelli’s.  And also thankfully, I never carried it out.  I was going to pack a bag and leave.  Just go.  I was going to do it when my family was at work/school/daycare, and not tell anyone where I was going.  I was going to move into a hotel, where there would be no children, no autism, no paperwork, no other people at all, minimal furniture, no demands of me, and I would never need to get out of bed.  I went so far as to plan what clothes and toiletries I would pack, which suitcase I would use, and which hotel I would go to, but I never actually packed.  I don’t know why I didn’t do it, but it’s probably because it was not a very practical plan.  I am an enlisted member of the military, so A) I have to show up for work, or I’ll get arrested, and B) I don’t make enough money to actually live in a hotel very long.

The weird thing about depression is that when you are in the middle of it, you can’t see it.  Everything seems so dark, but it also seems right, like this is how life is supposed to be.  And things make sense that really shouldn’t, like leaving my family and moving to a hotel and never coming out of my room.  With the support of my husband, I was able to realize that moving out was not what I needed.  What I actually needed was Prozac to get through the day, Ambien to get through the night, and a good therapist to help me sort everything out. 

There are so many things about having a child with autism that can make a parent sad.  I bet that there is something that makes me sad just about every day.  And yet, the line between sad and depressed is very gray.  If Kelli was so sad about her recent struggles (you can read her last blog post before the incident here: http://thestatuswoe.wordpress.com/2013/09/03/when-a-power-player-takes-you-down/) that she was deep in depression, then I can kind of understand why she would make a decision that seemed to make sense to her at the time, but doesn’t make any sense to you or me.  Of course I am not condoning her actions, and I do believe that she needs to be held accountable.  But I can be sympathetic.  And I can also be hopeful that other autism parents get help like I did before things escalate to the unthinkable.

Where the Hell did Summer Go?

Last June, right before school let out, I had a great idea for a post.  I was going to call it “How to have a successful year in kindergarten, ASD-style.”  I was going to talk about the things AB’s teachers and therapists did with him at the beginning of the year that really set him up for success.  I planned to convey what a fabulous time he had in kindergarten, and how he really came out of his shell throughout the year.  But then I took a summer class for my master of library science program, and that was really intense.  (A full semester crammed into 6 weeks.  Yikes!)  Then I got busy at work.  (I played a clarinet feature on one concert and was the announcer on another concert, both in the same week.)  Then I had 2 weeks of vacation.  (Some time at the beach, some time with family in Chicago, and some time painting the boys rooms.)  After vacation was over, I fell back into the work routine, and all of the sudden, it’s time to go back to school!  Really?!?!  Already?!?!  Where the hell did summer go?  I never got around to writing that post, and now so much time has passed that I’m afraid even my loyal readers may have forgotten that I have a blog at all!

So I’ll start with a shortened version of that post about AB’s great year in kindergarten.  He had a tough time with the morning routine at first.  He was supposed to unpack his backpack, hang it up, and then complete his morning work that was pre-placed on his desk each day.  For the first few days, he went straight to his desk, skipping all of the parts of the routine.  He then sat down and spent all of his time stimming with his fingers in front of his face, leaving the morning work untouched.  So, our ABA therapist created a simple visual chart for him containing 5 small cards attached with Velcro.  The cards were pictures of a folder, a lunch box, a snack bag, a backpack, and a worksheet.  When he completed each step of the routine, he was allowed to remove the card and put it in a pocket on the chart.  When all of the cards were gone, he was then allowed to have what the therapist called “AB time,” which meant that if his things were unpacked, his backpack was hung up, and his work was compete, he was allowed to stim with his fingers until the class began.  This worked amazingly well for AB.  He understood right away what to do, and this visual aid motivated him to unpack quickly and finish his morning work with time to spare.  He used this chart for about a month, and then the teacher took it away because he didn’t need it anymore.  She told me that after a month or so, he didn’t even need the stimming time as a reward anymore, because just accomplishing the morning routine was reward enough.  (Boy, I wish SB was that easily motivated!)  Several months into school, he saw the chart in his desk and told the teacher, “I don’t even use that anymore because I know what to do!”

AB's kindergarten visual aid
AB’s kindergarten visual aid

The classroom teacher did a few other things to help AB throughout the year.  He had a habit of zoning out during circle time activities, so she put an “X” on the floor close to her, and made that his special place to sit.  Sitting close to the teacher helped him to listen better and stay engaged.  The teacher also told me that she kept a timer in the classroom, and always gave the class a one-minute warning when the activity was about to change.  She noticed that knowing how much time was left in an activity helped AB a lot, and that he would often remind her when the one minute was almost up.  Probably the thing that helped him come out of his shell the most were the social skills that our ABA therapists introduced.  These are things like practicing conversation skills with peers, asking other children to play and share, and how to express with words when he was upset and why.  Again, I’d like to say how thankful I am that our school and our ABA therapists have such a positive relationship.  I know first-hand that not all schools are welcoming to outside therapists, and that we are very lucky to have teachers and a principal who are willing to listen to and try the new things that our therapists suggest.  At the beginning of the year AB was extremely and shy only played by himself, but by spring, he was teaching his friends how to play Pop the Pig on game day!

Making sure everyone follows the rules!
Making sure everyone follows the rules!

The boys have really had a great summer, filled with some camps and activities, and also some general down time, mostly used to play video games.  Since my husband is a teacher, he gets to be “Mr. Mom” in the summertime, spending lots of quality time with the guys.  (And we get to avoid day care costs!  Yay!)  We started the summer by joining the “Minis” program that is part of the swim team at our neighborhood pool.  My husband calls it the “Farm Team” for the swim team.  It’s for the kids who are too young for the swim team or aren’t experienced enough at swimming to be on the team.  The guys participated well enough at practice each morning, but are still not yet ready to be swim team members.  AB became more confident in the water throughout the summer, taking his first trips off the diving board and the down the slide in July.  At the last swim meet of the season, the Minis were invited to make one lap across the deep end of the pool before the meet began.  They were both pretty nervous about it, because they wouldn’t be able to touch the bottom.  But with a kickboard, they both did it!  My Mom was visiting that day, and she was on a swim team growing up, so she was happy to stay and watch a little bit of the meet with us.  SB was thrilled!  He cheered exuberantly for each swimmer, never losing interest with the experience, even though the swimmers were mostly strangers to him.  AB and I got bored after a while, so we went to check out the options at the snack table.  I really do hope they get good enough at swimming to join the team someday.  It looks like a very positive social experience, and the kids on the team all seem really close.  We will keep plugging away with swimming lessons at the local rec center!

AB's first trip off the diving board!
AB’s first trip off the diving board!

The first camp the guys went to this summer was at a place called “Life Changing Fitness,” a gym facility with the goal to promote physical fitness specifically in special needs kids.  After watching our guys and the other campers, we came to a happy realization.  When looking at a room full of special needs children, our guys don’t really “fit in” anymore.  They’ve made so much progress in language, behaviors, and social skills that they are starting to fit in a little better in a room full of typical kids.  (When SB was 2 and was in the Preschool Autism Class, he DEFINITELY fit in with the other kids in the class.)  We are so glad to be able to see this kind of progress.  As I told a friend on Facebook recently, I wish that I could go back in time and talk to 2007 Mindy to tell her what 2013 SB will be like, how much progress he will make over the years, and how smart and interesting he will turn out to be.  Then maybe 2007 Mindy wouldn’t have to be so miserable with all of her useless worrying!

The next activity was Vacation Bible School at our church.  To make sure we had maximum participation from them, one of our ABA therapists was there every day, bopping back and forth between SB’s and AB’s classes.  I would not have predicted that the guys would change roles on us – SB was a mostly model camper, while AB became the defiant, non-compliant one!  AB’s bad attitude and refusal to participate kept Ms. R very busy.  Thursday evening they did a Family Night presentation, with each class singing one song.  Right as SB’s group was climbing the risers to sing their number, SB yelled for the entire sanctuary to hear, “Hey Mommy!  Get your camera!”  Not shy, this one!  On Friday morning, SB said, “Aw!  I’m a little bit sad VBS is almost over!”  AB grumpily replied, “Well, *I’M* not sad!”  “Didn’t you have fun at VBS?” I asked him.  “No!  Because Ms. R was always telling me NOT to do things!”  Well, she’s an ABA therapist, kiddo.  That’s kind of her job!

We went to several baseball games as a family this summer, and SB’s interest in baseball has really taken off.  He can sit in the heat of a July afternoon in Washington, DC for 3 straight hours, and is just as excited about the last pitch of the game as he was about the first.  Baseball is full of numbers and statistics, so I’m not surprised that it has piqued his interest.  AB is less excited about sitting in the heat and watching the game, but thank goodness the Nationals stadium has a cool playground we can visit when things start to get boring!  During one game, we were sitting right above the visiting team’s (the Rockies) bullpen, and the Nats were getting creamed.  The stadium had emptied out considerably, but we were still there because SB was still enjoying himself.  At one point a Rockies player looked up at us (the only people left in the entire section), made eye contact with me, pointed to SB, and then tossed us a ball!  I caught it and gave it right to him, and boy, was he thrilled!  He carried that ball with him everywhere he went for at least a week, and he still takes it to bed with him most nights.

SB playing Plants vs. Zombies while his major league baseball watches intently.
SB playing Plants vs. Zombies while his major league baseball watches intently.

Next they went to soccer camp, which was a huge success compared to previous years.  I shared this photo on my Facebook page, and the caption explains it all:

soccercamp

“Burts Soccer Camp history:
2009: Simon went to soccer camp, age 4.  Wandered field aimlessly, did not participate, left early every day except Friday, because on Friday we didn’t even bother to show up.
2012: Both boys went to soccer camp.  This time I got smarter and enlisted the help of our ABA therapists and an aide provided by the county.  Both had some participation issues, but generally stayed involved throughout most of the week.
2013: Both boys went to soccer camp.  No ABA therapists were involved, and the county-provided aide only came for the first 2 days.  Both actively participated most of the time with minimal assistance.
PROGRESS! It takes YEARS, but it does happen!”

Even though they did pretty well at the 3-hour a day, 5-day long camp, my husband and I decided not to enroll them in a soccer team this fall.  We discussed the pros and cons at length, and came to the conclusion that neither one of them would really enjoy or get much out of doing a soccer team again.  (If you want to read about how painful soccer was last year, check out: The Soccer Mom Goes Back to School.)  During the camp, they did great during the drills and the silly games the coaches made up, but when it came time to play an actual game of soccer, my guys kind of tanked at it.  Neither one is aggressive enough to really get in there and try to get the ball from the other players, so they just follow the other players around until they get bored, and then wander the field kind of aimlessly.  During one of the games, AB complained to my husband that, “None of the other kids are sharing the ball!”  Sorry, dude – you are kind of missing the point!

After last year’s big trip to Disney World, we decided to keep this year’s vacation somewhat low-key and visit my parents in Chicago, where there is plenty to do, plus a free place to stay.  My parents spoiled them rotten, of course!  They got matching Plants vs. Zombies T-shirts that they wanted to wear every day.  My parents also took them “camping,” which was really just sleeping outdoors in tents in the backyard.  They were so excited about their first camping experience that before we even left, SB announced, “I want to sleep in a tent ALL the nights!”  I really thought they would get too scared and want to go back inside, but they made it through the night – twice!

Not sure I'd trust that kid with a hammer.  And how much "help" is he actually providing?
Not sure I’d trust that kid with a hammer. And how much “help” is he actually providing?

The best time was the day we spent downtown, visiting the Navy Pier, going on a Lake Michigan cruise, and going up to the top of the Sears Tower.  (Well, now it’s officially called the “Willis Tower,” but I’m going to keep calling it the Sears Tower in my mind.)  When we got to the small glass enclosures that allow you to look straight down 103 stories to the ground, AB got scared and immediately turned and left.  So did my husband!  SB, however, became completely mesmerized by the view.  He almost went into a sort of trance, laid face down on the glass, and just stared.  There was a line to get into the glass enclosures, so after a few minutes, I told him to get up.  He ignored me.  I don’t think he even heard me.  I told him several times to get up, and finally just gave up, picked him up, and carried him out.  Surprisingly, he didn’t get upset.  The effect the view had on him was pretty weird.  Here is the picture:

SB in a trance, enjoying the crazy view.
SB in a trance, enjoying the crazy view.

The last camp of the summer was Dinosaur Days camp.  It was a very well run camp and the boys had a fantastic time.  The ABA therapists only came for the first day, and thought things were going so well that they didn’t need to come anymore.  The guys made dinosaur-themed crafts every day, played games, went for hikes, dug for “dinosaur bones,” and learned all sorts of facts about dinosaurs.  My favorite craft was the Stegosaurus vest.

ROAR!!!!!!
ROAR!!!!!!

Last spring I got embarrassed when I realized that I was working on a degree to become a librarian, yet my guys didn’t really know how to use a public library.  So I decided to spend this summer teaching the guys how to use the library catalog and how to find books in the library by taking them once a week and giving them several tasks to complete.  If you know my guys at all, you know that his was a pretty ambitious idea.  (I get LOTS of ambitious ideas that I don’t have the time or resources to complete.  Just ask my husband.)  We didn’t make it to the library every single week, but we did go 5 times throughout the 10 weeks of summer.  Each trip had a theme, such as “bugs” or “baseball.”  I chose an appropriate book in advance, and then taught them how to find that book by typing the title or author in the catalog, writing down the Dewey Decimal number, and searching for it on the shelves.  Then they had to choose 1-2 appropriate fiction books and use the self-checkout station to check out their books by themselves.   The whole experience took about 20 minutes, yet always left me exhausted and frazzled.  The cool thing is that our public library has a summer reading program that gives each kid a coupon book for local restaurants and entertainment after reading 15 books.  It took all summer, but they did it.  And they were jumping up and down with excitement when they received their coupon books, even though they had no idea what a coupon book actually was!  We immediately went to Bob Evans to redeem the Free Kids Meal coupon to have pancakes for lunch.

Very heavy on the topic of bugs, and also on Henry and Mudge.
Very heavy on the topic of bugs, and also on Henry and Mudge.

Last year about this time, we experienced a lot of moodiness and meltdowns from SB that seemed random at first, but I soon realized that they were probably related to anxiety about going back to school.  So far this year (knock on wood!) we haven’t noticed anything like that.  School doesn’t start here in Virginia until September 3rd.  (We usually go until mid or late June, so it works out to be the same as everywhere else in the end.)  My husband has to go back this Monday for teacher work days, so the guys will start back to day care.  And then they will begin first and third grades.  Ready or not, here they come!

Splinters, Wine, Cake & Kites, and Pink

I could have titled this post “Memorial Day Weekend at the Beach,” but that seemed like such a boring title.  This one is a lot more interesting, don’t you think?

The entire Burts family has been spending every Memorial Day weekend on the beach at Oak Island, North Carolina since 1990, making 2013 the 24th year of the tradition.  My first trip was in 1997, when Charlie and I were still dating.  Since we have been married, I have missed a few of the gatherings due to my work schedule.  (Memorial Day is often a busy work day for military bands.)  However, my children have gone on this trip every year since 2007, when SB was 2 and AB was just a little newborn at only 1 month old.  So for AB’s entire life and for as long as SB can remember, this has been a regular, annual trip, and I love that they will always have these fond memories from their childhood of this family tradition.

My in-laws rent the same beachfront house every year for the 2 weeks surrounding Memorial Day, and invite any family members to make the trip for us much as they can.  As you can imagine, the house gets pretty crowded from Friday to Sunday of the holiday weekend!  You can walk out the back door of the house and take a 50-yard wooden walkway right down to the sand of a peaceful, quiet beach that is mostly residential.  The vibe is relaxed and carefree.  Nobody cares if you wear your bathing suit all day, or even your pajamas.  And shoes?  Well, shoes are most definitely optional!

This year the shoe laziness turned into a nightmare.  We first noticed them in the bottom of AB’s feet – 3 splinters!  We borrowed my mother-in-law’s nifty lighted tweezers and went to work.  Of course he cried and fought us, but my husband and I working together were eventually able to get them out.  Later that evening we were distraught to discover FIVE splinters in SB’s feet.  Boy, removing those was a terrible experience!He is so incredibly irrational about this sort of thing that there is really no reasoning with him or calming him down.  You just have to DO IT!!!  It took 3 adults (thanks to my sister-in-law for her restraining help) and about 15 minutes that seemed like hours.  When we were finally finished, I felt like I had just completed a Jillian Michaels workout tape.  Strangely, the splinters seemed to be contagious during this trip.  My mother-in-law ended up with one in her foot, and my father-in-law got two!  I left their splinter removal up to them, since I felt pretty drained from what I had already accomplished, and went straight for another glass of wine.

Speaking of wine, this is my favorite piece of décor in the beach house.

wine30
If anyone ever sees this sign in a store somewhere, buy it for me. I’ll pay you back.

One of the things that I love about the Burts family is that it’s ALWAYS wine-thirty!  They have perfected the art of relaxing on vacation better than my side of the family ever could.  (Sorry Millers.)

Another thing that I look forward to at the beach is flying a kite.  I never had much luck getting a kite in the air during my childhood.  It really takes a lot of wind, and in small-town Ohio, you can never be guaranteed a windy day.  But it’s ALWAYS windy at the beach, so my chances of success are much greater.  Last year I left the beach incredibly frustrated that I just could not get that stupid kite to fly, no matter how hard I tried.  So this year I did what any red-blooded American would do – I bought a more expensive kite!  I just like kites.

I’m not sure why I like kites so much, but I think it has something to do with a Raggedy Ann and Andy book I had as a child.  It’s called Raggedy Ann and Andy: Five Birthday Parties in a Row.  In the story, it’s Boy Doll’s birthday.  (He certainly needs a better name, doesn’t he?)  He has a fabulous time at his birthday party, playing games, eating cake, and receiving a kite as a gift.  For his birthday wish, he wishes for…you guessed it…five birthday parties in a row.  But each successive party seems less fun, and the cake seems less tasty.  Boy Doll realizes that there is no one to play with him or help him fly his kites, because all of the other dolls are busy planning his next party.  On the fifth day, he asks Raggedy Ann to not give him another party, because he has learned that what makes a birthday party special is that it only happens once a year.

Years ago I described this book to Charlie, and he found the story very sweet.  Referencing it became one of our little inside jokes.  When one of us was really excited about something and wanted it to come sooner or happen again, the other would joke, “Now remember – you can’t have cake and kites EVERY day.”  My own copy of this book is long gone, but a few years ago my sweet husband bought me one on eBay.

fiveparties1
Here is Boy Doll, realizing that his fourth party is not as fun as his first. But look at all those kites!!!

 

fiveparties2
Or as my husband and I would say, “You can’t have cake and kites EVERY day!”

 

kite1
Got that kite in the air! Hell, yeah!

 

kite2
Double butterfly shot.

 

SBkite
SB was interested in flying the kite for about 2 minutes, then he was done.

 

ABkite
Unable to stand still, AB did some cool Ninja-type moves during his kite-flying time.

 

There is also cake every year on the beach trip, because my father-in-law’s birthday is May 22, so naturally we celebrate his birthday while we are all there.  (Coincidentally, my own father’s birthday is also May 22.  What are the odds of that?)  So with wine, cake, and kites, I’m a pretty darn happy girl!

My children were also very happy on this trip, partly because we let them have much longer periods of time with our Kindles and our iPods than they normally get.  (What the heck, it’s vacation!)  Listening to music on either mine or my husband’s iPods has become a new favorite pastime for both kids.  They have both always liked music, but they both also really like watching the numbers on the counter as they listen.  I realize that this a pretty stimmy thing for them to do, but I have made peace with the fact that I will never completely eliminate their stimmy behaviors, and just let it happen in controlled doses.  Unfortunately, it also drains the battery on my iPod thousands of times faster than when I am listening to it during a run, because they keep the screen lit up the whole time.  And, when you are trying to teach your children the difference between an “indoor voice” and an “outdoor voice,” you probably shouldn’t let them use an iPod and a pair of Bose headphones.  Letting them listen to music this way gives me periods of blissful quiet time interspersed with the occasional “HEY MOMMY!!!!!!  I AM LISTENING TO A RUSH SONG RIGHT NOW!!!!!!!!!!!!!!!!!”

Ever since they have outgrown toddler music like the Wiggles (who we saw live three times, thank you very much) my husband and I have been trying to brainwash our children introduce our children to our favorite 70’s and 80’s pop musicians.  They know and love the Beatles, the Monkees, Chicago, Michael Jackson, Journey, Huey Lewis and the News, Hall and Oates, the Bangles (SB has a great big crush on Susanna Hoffs), the Go-Gos, and recently my husband has turned them into little Rush fans, much to his delight.  It didn’t take them long at all to learn how to use an iPod.  At first, they just wanted to listen to music they already knew.  Then, I noticed that SB was branching out and trying new music from my iPod when he asked me some of his typical questions about a new pop artist: How many CDs does Maroon 5 have?  (I don’t know.  I only have one.)  How many songs do they have?  (I don’t remember.)  How many minutes is their longest song?  (I have no idea.)  How many people are in Maroon 5?  (Probably five, but since Ben Folds Five only has three members, I decided to look that one up on the internet for him to be sure.  Yep, it’s five.)  What’s the name of the man singing?  (His name is Adam.  He has lots of tattoos and is really, really, hot.  Oh, OK, I left that last part out.)

I didn’t think much about his branching out until he started asking me the same questions about Pink.  I answered a few questions before I realized, “Oh, shit!  Pink uses a LOT of profanity!”  So now I am undecided about what to do.  I could tell them that they are not allowed to listen to certain albums, but I would have no way of policing my rule, since I am not going to hover over them and take note of every single song that they listen to.  And wouldn’t that just make those albums more enticing, anyway?  (Why did my husband and his sister watch the original Halloween movie and get nightmares for weeks when they were kids?  Because their Mom specifically told them NOT to, that’s why!)  Should I remove all of the music with profanity from my iPod?  But I LIKE Pink!  I like her bad-ass attitude, and I like to work out to her music.  I could keep certain albums off the iPod when the kids are using it and then put them on when I am using it, but that doesn’t seem very practical, as we all use iPods several times a day.  Like I wondered in my last post, is it time to get the kids their own devices?  Is 8 too young to own an iTouch?  Is 6?  I certainly can’t buy just one – I am not willing to deal with the fighting THAT would create!  At this point, I am just going to assume that they don’t really understand what the lyrics are actually saying anyway until I figure out how to handle this one!

Other highlights from this trip were many swims in the ocean, lots of writing in the sand, a dip in a pool colder than a polar bear’s toenails, a visit to a souvenir shop to buy 2 toy motorcycles, and a trip to a miniature golf course/arcade.  Special highlights for the grown-ups only included not just one, but TWO meals out for Mommy and Daddy (there may have been some wine), a trip to Dairy Queen, and one movie for me and TWO movies for my husband.  (This Sci-Fi Nerd Girl couldn’t WAIT to see Star Trek: Into Darkness, but decided to pass on The Hangover Part III.)  My favorite time was spent all by myself, reading and sipping wine by the ocean.  All in all it was a great trip, despite the splinters, and we look forward to going back next year.  But next year, NO ONE leaves the house without sandals or flip-flops!!!!

 

feedingbirds
SB and AB feeding bread to the seagulls with their grandmother. Note that NO ONE IS WEARING SHOES!

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No beach trip is complete without a trip to a tacky souvenir shop. AB does not seem at all terrified by the fact that he is about to get eaten by a shark!

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Although SB enjoyed miniature golf, Tiger Woods he is not.

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Out of the blue, AB looked at his 15-year-old cousin and yelled, “Chase me!!!” Then he took off. Thankfully, she obliged.

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I love capturing the kids mid-jump.

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Just two brothers, awed by the vastness of the ocean.

 

Stop already with the cutting of the ropes and the opening of the boxes and the eating of the donuts!

I think that all autistic kids have quirky, unusual obsessions, and mine are certainly no exception.  Even when SB was very small, he would spend hours doing things like opening and closing the bathroom door and pushing the buttons on this toy telephone that lit up and made beeping and blipping sounds.  He has always had an obsession with elevators, and therefore we have never been able to walk past an elevator in any shopping mall, parking garage, or medical building without riding it.  Birthdays were another obsession.  By the time he was in kindergarten, SB asked everyone he met, “What’s your birthday?” usually even before he said “hello!”  Then he talked incessantly about whose birthday was when, showing off his fantastic memory.  More recently, he and his brother went through a “Dead End” obsession.  They both spent countless hours talking about dead ends and drawing dead end signs and drawing roads that dead ended into dead end signs.  (That was one obsession that was particularly grating on my nerves!)

The latest, greatest obsession for both of my boys is a game app called Cut the Rope.  It’s a nice, sweet game starring a fat, big-eyed, hungry frog named Om Nom.  The background music is a catchy little tune interspersed with a cool, synthesized tuba line and also nifty synthesized, arpeggiated clarinet licks.  The game starts very simple but gradually gets more challenging as it requires the player to use their best problem-solving skills to get the candy (or, in later levels, the donut or the cupcake) into the mouth of the frog.  The player also collects stars along the way, and after collecting a specified number of stars, more levels (that are called “boxes”) are opened.  Here is a little video of a few of the levels.  Take special note of the disappointed sound Om Nom makes when he fails to eat the candy and pass the level.  That will come up again later.

Om Nom is pretty cute, and as the game gets more complicated, it gets kind of addictive, even for adults.  It sounds harmless, right?  What’s not to like, you ask?  Well, I’ll tell you:  IT WILL MAKE YOU WANT TO BUST SOMEONE’S SKULL IF YOU HAVE TO HEAR YOUR CHILDREN TALK ABOUT CUT THE ROPE ALL THE DAMN TIME!!!!!    

Sorry.  Lost it there for a minute. 

Both my husband and I each received a Kindle Fire as a gift from my parents a few Christmases ago.  At first we kept our new gadgets to ourselves, doing grown-up things with them like reading ebooks and checking Facebook.  But it didn’t take long for us to discover that there is a whole world out there of apps for children that would keep our kids happily occupied while we could do other grown-up things, like have conversations and drink wine.  So while my kids played Angry Birds, Where’s My Water,  and Fruit Ninja, and my husband and I enjoyed some uninterrupted time, I told myself that I was doing the kids a favor.   I was introducing them to age-appropriate games that their peers were also playing, which would help them fit in socially by giving them appropriate conversation topics around other kids.  Parenting WIN!!!!  But then our ABA therapist, who is awesome at her job so we will forgive her for this, introduced us to Cut the Rope.

Very quickly, both boys became completely obsessed with playing Cut the Rope, and my husband and I had to put strict limits on “Kindle Time,” or they would truly never stop.  Oh, they still sometimes play Fruit Ninja or Hangman, but Cut the Rope is definitely the shit right now.  They want to be playing Cut the Rope ALL THE TIME, but we only let them have Kindle Time for certain periods of the day, which they have to earn.  Therefore, they spend a good portion of the rest of their day doing this:

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If I can’t be playing it every waking moment, the next best thing is to draw pictures of it and PRETEND to play it, right?  To make it even more awesome for me, AB found a collection of Sharpies in a kitchen drawer, and decided that he could ONLY draw Cut the Rope pictures with a Sharpie.  Being a tired, working Mom who is also going to grad school, I didn’t think much about this until I had to scrub Sharpie marker off of the hardwood floors in the kitchen AND we had to throw away a dry-erase calendar that now displayed the birthdays of his classmates for the month of March – forever.  He was intensely disappointed when I handed him a pack of Crayola markers and told him that the Sharpies were off-limits from now on.

Another funny story happened when we were at my grandparents’ house for Christmas.  SB brought the Kindle to me, somewhat upset, exclaiming, “It won’t work!  It won’t work!”  I stared at the screen for a minute trying to figure out what was going on.  Apparently, the player has the option to buy “Super Powers” for Om Nom to help him get through the levels faster.  These Super Powers can cost anywhere from $0.99 to $7.99.  And SB was not able to purchase any Super Powers because (thank goodness!) my grandparents don’t have Wifi at their house.  I told SB that he was not allowed to buy Super Powers, and then I set the Kindle back to the level he was playing.  Thankfully he didn’t get too upset about it.  Later that night, my husband and I both enabled our Kindles with parental controls that require a password to be entered before ANY purchase.  (There had also been a previous incident where AB unknowingly purchased season 1 of “The Vampire Diaries” on my Kindle and proudly announced, “Look, Daddy!  I’m watching a show!”  Thankfully, my husband was able to cancel the purchase.)  So we realized that it was urgent that we do this before leaving my grandparents’ house and going home, where we DO have Wifi.  THAT’S just what I need – my 8-year-old buying toys, electronics, and furniture from Amazon, having it shipped to the house and charged to my credit card without my knowledge.

The most annoying thing about my children’s Cut the Rope obsession is how much they both talk about it.  Really.  ALL.  THE.  TIME.  Both are good with numbers and like to talk about numbers, so the discussion is almost always about which “boxes” are not yet open on which devices and how many stars it will take to get those boxes open.  “Tool Box is open on Mommy’s Kindle but it needs 16 stars to be opened on Daddy’s Kindle.  Foil Box needs 40 stars on Mommy’s phone and 21 stars on Ms. K’s iPad.  Magic Box needs 62 stars in Daddy’s Kindle and 102 stars on Ms. C’s iPad.  Valentine Box needs 26 stars on Mommy’s phone and 12 stars on Ms. K’s iPad and 4 stars on Mommy’s Kindle.”  And on and on and on……  It both annoys me that they can’t talk about something more interesting and also impresses me that they can store all of this information in their little noggins.  Yet SB couldn’t seem to store any information about Pueblo Indians in his noggin when he had a test at school about THAT!  Hmmm…

No, sorry, I just lied.  Actually, the MOST annoying thing about the Cut the Rope obsession is how SB likes to imitate the disappointed sound Om Nom makes when he fails to complete a level.  Om Nom makes this “Aww” sound during the game when he fails to eat the candy.  SB likes to imitate it by making this strange, guttural sound in his throat that I cannot even try to replicate.  And it’s like fingernails on a chalkboard to both my husband and me!  We actually had to make a “No Cut the Rope Sounds” rule in our house, because we couldn’t stand the sound he was making in his throat.  Over and over and over again. 

I actually considered getting SB an iTouch for his birthday in February.  I thought that he would love having his very own device to play Cut the Rope on, and that his relatives could give him iTunes gift cards for presents on gift-giving occasions so that he could learn to budget his own money for Super Powers.  But I eventually decided against it, because the dynamic we currently have with “Kindle Time” is SOOOO GOOOOOOD!!  You see, Kindle Time is the most valuable, highly-rewarding thing we have right now.  If I want either of them to do something, (or NOT do something) all I have to say is “You will lose Kindle minutes if…” and I usually get the behavior that I want.  At home, Kindle Time is currently the reward for participating appropriately in Tae Kwon Do class and in swimming lessons, and for picking up toys in a timely manner.  Kindle Time minutes can be taken away for pretty much anything – not picking up toys, not participating in activities, talking back, not doing what was asked, hitting your brother, etc.  It also didn’t take long for their teachers to discover how powerful Cut the Rope is as a carrot to dangle over them, so both boys can earn time with their teachers’ iPads to play Cut the Rope at school for doing a good job.  (It feels like the Burts family is the only household in America without an iPad.  We are SO uncool!) 

Cut the Rope gives my children much joy, but brings them sorrow as well.  Just last night, I had to talk AB off of the ledge for a good 5 minutes while he sobbed and sobbed, barely able to breathe through his tears.  It took a while, but I finally got him to explain to me why he was so upset.  Apparently, when he sat down to play, Tool Box only needed a few stars before it could be opened on my husband’s Kindle, and he was certain that he was going to do it before bedtime.  But at 8 pm, the time that they knew that they were required to turn the Kindles off, it still needed 1 more star to be opened.  When he realized that he wasn’t going to open Tool Box that night, well, you might as well just give up on life right there, because clearly, the world was about to end.  After a bedtime story and a few kisses, he was able to calm down, but I’m sure he was still incredibly disappointed as he fell to sleep.

I really shouldn’t be complaining about my kids playing Cut the Rope, though.  Unlike the Dead End obsession, there really are some benefits to this obsession.  Like I’ve already said, Cut the Rope is the most powerful carrot their parents and teachers have right now to motivate them to behave and do what they are supposed to.  And I wasn’t really joking earlier about the social benefits of playing iPad/Kindle apps.  I’ve been to several lectures and workshops about encouraging social interactions in autistic children, and video games are always a hot topic.  The speakers at these workshops always stress how it really is important to introduce autistic children to the video games and apps (along with the TV shows, movies, and music) that their peers like, because they won’t naturally pick up on what is “cool” just by being around other kids.  I also like that this game encourages problem solving.  Back when they played a lot of Fruit Ninja, I thought about how mind-numbing that game is and how it doesn’t really take any thinking skills at all.  (That doesn’t stop ME from playing it, of course!)  SB generally has a pretty short fuse and tends to give up very quickly when something is a little bit challenging for him.  I have been pleasantly surprised at how tenaciously he continues to apply trial and error to pass each Cut the Rope level.  I’ve also talked to them about Om Nom’s terrible diet, explaining that Om Nom is likely going to get very sick eating only candy, donuts, and cupcakes, and that he really needs to eat some fruits and vegetables to be healthy!  I really don’t think this stuck as a nutrition lesson, but it did make them laugh a lot, because they found the thought of Om Nom eating green beans completely hysterical.

One of SB’s latest ABA therapy programs is teaching him to use a “Talk Box.”  The Talk Box is just a small, plastic box big enough to hold index cards.  The therapist chooses a topic that is forbidden for a set amount of time, writes that topic on an index card, and then puts the card into the box and closes the lid.  Now SB is not allowed to talk about that subject until the card is removed from the box.  This will (hopefully) teach him not to perseverate on one particular topic so much, and help him learn how to find new topics to discuss when making conversations with others.  He has been using it successfully in his therapy sessions for a month or so, and next week we are going to start using it at home as well.  What do you think is the first topic Mommy is going to put in the Talk Box?

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Inside the thoughts of a crazy woman, part II

In October of 2010, a friend and coworker learned that her daughter, then age 3, had leukemia.  TM’s daughter was the same age as AB – we had been pregnant at the same time.  I remember feeling that although leukemia and autism are not at all the same thing, we did have something in common, which was that there was a serious issue going on with our child.  I felt that I should reach out to her, and so I sent her this message:

“I heard your news, and wanted to say something. But I’m not quite sure what to say, except that I’m so very sorry. The only frame of reference I have is SB’s diagnosis, which I know is a different thing. But I do remember feeling like my world was falling apart, and his diagnosis was the only thing I could think about all day and all night long. I mulled the word “autism” over and over in my brain like it was some evil, foreign word I was trying to learn to understand. And I felt like no one else in the world could possibly have any problems even close to being as big as mine, and that everyone else should just shut up about their stupid problems and complaints. And even when someone tried to say something nice, I always took it badly, like they were insulting me somehow, because of course, I was completely irrational. I can only imagine that you must be feeling some of those same things.”

I meant every word, of course.  I remember going to a band rehearsal only a few days after SB’s diagnosis, and one of my coworkers was complaining about another coworker being out of tune.  Or maybe he was complaining about ME being out of tune.  I don’t really remember – that time period is pretty foggy in my brain.  But I do clearly remember thinking, “How am I supposed to give a shit about the intonation of my throat tone G?  THERE IS SOMETHING WRONG WITH MY CHILD!!!!!”

(On a side note, I have tried to shift my attitude in recent years, and try not to feel that there is something “wrong” with him.  There is just something different about him, and he needs extra help in areas that are hard for him.  But that’s not what this post is about.)

Of course, I felt a number of emotions upon hearing TM’s news.  Sadness, anger, fear, empathy…all reasonable emotions, right?  And then one emotion hit me by surprise.  Jealousy.

What kind of sick person is jealous of cancer?  Me, apparently.  What that little girl, and her family, was about to go through was going to be horrible.  No one should have to suffer through that, especially not a 3-year-old.  She was about to endure more than 2 years of poisonous chemotherapy treatments, spinal taps, and other uncomfortable procedures, and all of the terrible side effects that go along with them.  Why in the world was I jealous?  Because her treatment had a specific END DATE.

You see, I am not one of those people who believe that autism can be cured.  “Cure” is simply a word I do not use when it comes to autism.  I DO believe that with therapy, hard work, perseverance, and the right supportive therapists and teachers, both of my children will probably be able to navigate this world independently someday.  But they will always have difficulties with certain things, such as interacting appropriately with others.  They will constantly be using strategies to overcome their difficulties, much in the same way that I try to overcome my ridiculous lack of directional ability by using a GPS, studying maps, and keeping a sense of humor.  They may become so good at those strategies that the people around them aren’t even aware of their autism, or they may always present as strange and quirky people.  I think that they will have at least a few friends, but I wonder if they will ever date or marry.  I am fairly hopeful, at this point, that they will both be able to acquire and keep a job that is meaningful to them, and will feel that they have a sense of purpose.  But I do not believe that they will ever be cured of autism.  It is a part of who they are, and always will be.  This makes me terribly sad at times, because no one wants to see their child suffer or struggle.

So on some illogical plane of existence, I felt jealous of this parent who had to watch her child suffer and struggle, but only for a defined period of time, and then it would be over.  Then her daughter could go back to being the normal child she had been before her diagnosis.  Wouldn’t that be better than a lifetime of suffering and struggling?  (Yes, I realize that I am glossing over the very obvious fact that I have never once had to worry that either of my children would lose their life to autism.  This is one of the facts that make autism and cancer very, very different.  But we are inside MY crazy thoughts here, so just roll with it, OK?)

I also felt a (slightly) healthier version of jealousy when I learned that TM’s daughter was admitted to the hospital on the same day as her diagnosis, and began chemotherapy treatments immediately.  That very day!  I wanted to pump my fist in the air and shout, “Yeah!  You get on it!  You kick that cancer’s ass and you do it NOW!”  There was an agonizing FOUR MONTHS in between SB’s diagnosis and his first therapy session, and also four months between his diagnosis and his first day of special ed preschool.  Things that slow the process down are finding a provider, sometimes being put on a waiting list, haggling with insurance, and many, many assessments before school and treatment can begin.  Even when you have a diagnosis of “Classic Autism” from a Developmental Pediatrician, everyone seems to want to do their own assessment, just to be sure.  Those four months seemed to last years to me, because I knew that we needed to be doing SOMETHING, and that we were losing valuable time, but just couldn’t start treatment until all the ducks were in a row.  So to learn that TM’s daughter was starting treatment on the same day of her diagnosis made me delighted for both of them.  I felt a little bit of happy along with my jealousy that they did not have to endure months of waiting for something to start.

I did talk with TM before writing this post, because even though I am not using her name, anyone who knows both of us will know exactly who I am talking about. And I admitted, with a great deal of embarrassment, that I had been jealous of the fact that cancer treatment has an end date, and autism treatment does not.  It turns out that I was somewhat mistaken.  There are a wide variety of late effects of chemotherapy, which are side effects of cancer treatment that can become apparent after treatment has ended, in many cases years later.  She told me that some of her family members are showing more anxiety about the late effects that may or may not show up than they did about the actual chemo treatment.  I suppose this makes sense.  The side effects of chemotherapy are pretty well known and expected, and the unknown is ALWAYS scarier than the known.  And they will forever have the fear, of course, that the cancer may return.  She asked me if any parent, whether their child has issues or not, ever truly stops worrying about their child.  I’m not sure, since I don’t have any children without “issues!”  But I imagine the answer to that question is no.

I realize that I have over-simplified a lot of things about autism and cancer to explain here what I was feeling, and two years later I am certain that those feelings of jealousy have long passed.  What is the point of admitting all of this, anyway?  I guess my point is the same as it was in my original post with the same title, Inside the thoughts of a crazy woman.  If your child has recently received an autism diagnosis, or a diagnosis of any other disease or disorder, you will probably have strange thoughts that go through your mind.  Thoughts that surprise you, scare you, and maybe even thoughts that make you think you are a horrible person for thinking such things.  But you are not a horrible person.  You are a normal person, reacting to something that is very distressing and upsetting.  Your thoughts and feelings may be a bit crazy for a while, and that’s normal.  Well, I think it’s normal.  OK, maybe I’m not sure if it’s normal, but I CAN tell you for certain that you are not alone.

We Love ABA

I have mentioned in this blog many times that ABA therapy (Applied Behavior Analysis) is the only formal therapy that we do for both of our autistic children.  My husband and I whole-heartedly believe that the only reason that SB is able to function in a mainstream classroom at age 8 is because he has been receiving intense ABA therapy since age 2.  After my last post, Stopping the Panic! Terror!  Meltdowns!,  I was really feeling like I just wanted to shout it to the world how positive ABA has been for our family!  Yet I still read criticism of ABA on a somewhat regular basis, and occasionally meet parents who will not do it for their child for one reason or another.  Here are just a few of the criticisms I’ve come across recently either in person, online, or in print, and my attempts to dispel these myths:

1) ABA makes the child robotic in their speech and/or actions.

Yes, maybe SB’s language is a little more rigid and less fluid or natural than his peers.  But HE’S TALKING TO ME!  Isn’t that much better than NOT talking to me?  He did not even begin to speak until after he started therapy, and I believe that if he had never had ABA, he might still be nonverbal today.  And believe me, life got a whole hell of a lot better for ALL of us once he learned to communicate.  Can you imagine how frustrating life would be if you could not tell anyone what you wanted or needed?

2) ABA is brainwashing by reprogramming the child with appropriate responses.

“Brainwashing” is a big scary, word.  Yes, ABA therapy is essentially reprogramming a child to respond differently in certain situations.  But so is giving your child dessert when they finish their meal, letting your child watch TV after they finish their homework, taking away their iTouch when they don’t clean their room like you asked, not to mention giving your employees a paycheck for showing up to work and doing their jobs.  The main principle of ABA is to demand a small, manageable task from the child, and then give them a reward for doing it to increase the likelihood that they will do it again.  Exactly like getting dessert for finishing your vegetables.  Except that the small, manageable task is usually a skill that you would never need to reward a typical child for, such as to say the word “ball” or to put a block into a shape sorter.

3) The therapists use physical violence, such as hitting, slapping, or shocking the child.

If your ABA therapist does this, find a new ABA therapist.  Fast.  Physical violence may have been considered a normal practice in the 1960’s, but it is NOT in 2013.

4) It is a money-making scam for ABA therapists.

There is much scientific evidence that proves that ABA therapy is effective in helping people with autism.  It is not a money-making scam.  There ARE a lot of money-making scams out there that claim to treat autism.  ABA is most absolutely not one of them.  Here are a few links you should check out if you are looking for more information about what ABA is and the evidence that it is effective in the treatment of people with autism.

http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba

My favorite line from this link is, “Effective ABA intervention for autism is not a “one size fits all” approach and should never be viewed as a “canned” set of programs or drills. On the contrary, a skilled therapist customizes the intervention to each learner’s skills, needs, interests, preferences and family situation.”  This individualization of each child’s program is one of the most important aspects of ABA.

My second favorite line is, “Competently delivered ABA intervention can help learners with autism make meaningful changes in many areas. However, changes do not typically occur quickly. Rather, most learners require intensive and ongoing instruction that builds on their step-by-step progress.”  Yes.  It is slow, tedious, and sometimes you don’t even notice the progress for months.  But you just can’t give up.

http://www.rethinkautism.com/AboutAutism/ABAOverview/

Most important line from this link: “ABA is the only treatment for autism whose benefits have been consistently validated by independent scientific research. In fact, ABA has been endorsed as an effective intervention for autism by the American Academy of Pediatrics and the United States Surgeon General.”

http://seab.envmed.rochester.edu/jaba/index.html

This link for the Journal of Applied Behavior Analysis is for those of you who want to read actual scholarly, peer-reviewed articles containing real scientific studies.

http://www.nap.edu/catalog.php?record_id=10017

This is a link to the book Educating Children With Autism.  I have not read this book, but our ABA therapist recommends it if you want more in-depth information about behavior analysis.

5) ABA therapy teaches the child lots of unnecessary skills.

This one someone actually said to me in a Facebook comment.  I thought I would list just some of the things my children are working on right now in their ABA programs, and let you decide if you think these skills are “unnecessary.”

– To learn how to keep an acceptable amount of space between themselves and other people, because walking up to people and placing your hands all over their bodies and in their hair makes them feel uncomfortable.

– To learn how to label the emotions on the facial expressions of others.  This is done using pictures, videos, and in person.

– To learn how to manage their school time efficiently, by being rewarded for staying on task and staying in their seat during work time.

– To learn to imitate peer movements during group activities (such as circle time at school) without adult prompts.

– To learn how to have a conversation with others by taking turns, asking questions, making comments, not talking about the same thing for too long, and staying on topic.

–  To learn how to use the appropriate volume when having a conversation with others by matching the volume others are using.  (SB has a natural tendency to talk MUCH louder than most situations require.)

– To learn how to play with peers by practicing things like turn-taking and the language used during play in play dates.  (What do you want to play?  I’m all done with this for now.  Can I play with you?  Etc.)   Also, to learn to be flexible with peers during play dates, because you can’t ALWAYS play only what you want to play.  (We have weekly play dates at our house with typical peers for both of our children as part of their ABA sessions.)

– To learn how to read a story, and then retell in their own words what happened in the story, either verbally or in writing.

I have to admit that early on, when he was only 2 or 3, some of SB’s therapy goals did seem a little strange to me.  For example, his therapists used a lot of picture cards, laying a group of cards down in front of him and requiring him to match the identical pictures with each other.  Later, when he had mastered that, he had to match similar pictures with each other (such as a big, brown dog with a small, white dog.)  So I asked, “Why is he doing this?”  His therapist explained to me that these matching skills are prerequisites to speech and language.  Since speech doesn’t come naturally to many kids with autism, you have to teach it to them by starting with the developmental skills that come before the talking even starts, such as matching.  Not surprisingly, matching skills don’t come naturally to some of these kids, either, so those skills have to be taught as well.  It turns out that behavior therapists and speech therapists have been studying speech development for years, and know a lot more about it than I do.  So if you don’t understand why your child is learning something in therapy, just ASK!

Of course, there are good ABA therapists and bad ABA therapists out there, just like there are good and bad doctors, teachers, lawyers, and plumbers.  If you find yourself in a situation where you are unhappy with your child’s therapy, please don’t give up!  Find another therapist that makes you and your child feel comfortable.  I am so happy with how SB’s behavior has improved in stressful situations, and it’s because of ABA.  And I just want to tell the world how beneficial ABA can be to autistic children, because I want to see ALL children be the best that they can be.