Monthly Archives: November 2013

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!