Wednesday, June 22, 2011

Game Changer

Where do I even begin?  How in the world do I describe the progress that Michael has made in just 12 short weeks?  And how do I even attempt to put into words how grateful I am that Michael had the  opportunity to attend the Early Childhood Partial Hospitalization Program at UCLA?  It's taken me over two months to write this post, so I guess I'll just have to give it my best shot.

First, I'll try to describe Michael and our family before UCLA.  At school, Michael was completely reserved.  I called him my Little Turtle because he looked like he was shrinking into a shell when he sat at a table with his peers - shoulders hunched, head down, trying to shield himself from the world.  He barely talked at school.  He never greeted his teachers or peers when he arrived in the morning.  He was always the last kid sitting at the snack table, the last kid in line to wash hands, and the kid who shied away from the others during playtime.

At home he released all the stress of "holding it together" while he was out.  He could have up to 20-30 tantrums a day, some lasting up to 90 minutes of screaming and flailing around on the floor.  Things as simple as his waffle falling off his fork would send him into hysterics.  His rigidity was out of control - if anything happened differently than how he wanted it to it resulted into yet another tantrum.  If his fork was too close to his plate, if his sister made a toy car fly instead of drive, or if I gave him a red gummy vitamin instead of an orange one, we were in for a doosy of a fit.  He was even starting to get aggressive towards his 2 year old sister, and me - lashing out by hitting, kicking and clawing when he didn't get his way.  In general, life at home was exhausting.  Don't get me wrong, Michael has always been a wonderful kid - he's cute, funny, and has amazing vocabulary.  But the tough times were definitely starting to outweigh the happy times.  I even realized we'd stopped going out.  If we were invited to a friend's home, or wanted to go to an unfamiliar museum or store, I tended to decline the invitations and avoid the outings knowing that we'd likely spend much of the time "taking breaks" in a back room or heading to the car early.  The stress on Michael and on me to go out made it such that I'd rather just avoid it and stay home.

Fast forward to our life after the UCLA program...

At school, Michael now greets his teachers and peers.  He engages in play (sometimes, but we'll take it!).  He answers questions during circle time.  He's still the last one to finish his snack and the last one in line, but we're working on that.  His teachers describe him as "a completely new kid".

At home, his tantrums are down to less than 10 per week (maybe up to 3 on a bad day).  He's much more tolerant of things that are not in his control.  For example, he can deal with a dropped waffle (with some prompting), he's learning to share with his sister and tolerate different ways that she plays, and he even sits in different seats at the kitchen table.  We now have a full social calendar on the weekends.  We can have playdates at home and friends' houses without major meltdowns or hours of hiding under a table.  We've even managed to attend several birthday parties!  We can go on outings to new places (though not always without challenges, as I'll talk about in a future post about a recent trip to the Aquarium).  And we're going to attempt our first ever trip to the movies to see Cars 2 next weekend, which is something I never would have done before UCLA.

Michael has real friends now - actual connections with a few kids his own age.  I'll say it again because this was something I was afraid he might never really have: Michael has FRIENDS.  To put this into Michael's own words, I have to outline a conversation we had in the car one morning on our way to UCLA, a conversation that will forever be engrained in my memory:
me: "Michael, you know pretty soon you're going to be done at UCLA and you'll go back to your old school."
Michael: "No, I don't want to be done at UCLA.  They are my REAL friends."
me: "What do you mean, REAL friends?"
Michael: "They KNOW me.  And I like them."
This was the first time I had ever heard Michael talk about friends.  And the fact that he recognized the connection that he had made with his peers was enough to put me over the edge to tears.  At UCLA, they trained our kids on some of the basic building blocks of social skills - the kind that come naturally to typical kids.  Things like facing a peer when they're talking to you, or answering a simple question like "Do you like ketchup" with "Yes I do, do you?"  After hours and hours of this type of training, Michael had learned to come out of his shell and relate to his peers, and as a result he has been able to form true friendships.

Michael and one of his friends from UCLA
Another key for us that we learned at UCLA was that Michael was really struggling with anxiety.  Until it was brought to my attention, I didn't see it.  But once they told me what they saw it was so clear.  The poor kids was a wreck with nerves and negative behaviors as a result of that anxiety.  With the help of medication as well as some other coping skills they taught us, Michael isn't a little turtle anymore staying in his shell away from the unfamiliar world.  Which is the only way we can now venture out into the wonderful world of preschool birthday parties and even through the aisles of the new Target store.

This post would turn into a book if I tried to explain all of the skills and techniques they taught us during our 3 month stay.  But I would be remiss if I didn't talk about my Tuesdays there.  Yes, MY Tuesdays.  This program wasn't just for Michael, but for our WHOLE FAMILY.  On Tuesday mornings we had a family intervention session with the behaviorist where we brought Maya and Michael, plus me, their dad and even their nanny so we could replicate some of the situations we were struggling with at home and learn new techniques to help cope.  After that, I went to the parent support group - my favorite time of my week!  We learned from each other, made each other laugh, cried on each others' shoulders, and made some friends for life.  It was an amazing experience going through this program - sometimes overwhelmingly difficult, sometimes triumphant, and always educational.  Getting to share all that with a handful of other moms (and dads) going through the exact same thing at the exact same time was an experience I will treasure for the rest of my life.  (Thank you Laura!)  After parent group, I had time reserved to observe Michael through a one-way mirror.  During that observation time I was able to see how Michael was without me in the room, how he responded to certain things the teachers did with him, how he responded (or didn't respond) to his peers.  It was time for me to reflect on the progress he was making, and the areas we had yet to work on.  I wish every classroom from now until graduation had an observation room :-)

So, all in all the ECPHP program was a godsend for Michael and our family.  But I have to say it isn't a cure for autism.  One of the "veteran" moms told our Tuesday group this very thing on my first day.  She said, "You have to realize that this program is amazing, but you won't be leaving autism behind when you leave here."  Won't be leaving autism behind.  Those words hit me surprisingly hard.  I hadn't realized until I heard her say them that deep down I was hoping that we would.  But the reality is that autism is a journey, a marathon, a long-term commitment.  Call it what you will, the point is that it can't be erased during a magical 12 week period.  No matter how much we wish it to be so.  No matter how much it may seem possible since the whole staff at ECPHP seem to be miracle workers.  But in the end, we walked out of there with the education, encouragement, enlightenment, confidence and skills we would need to continue on our journey.  And we are all forever changed for the better for it.  It's been a true game changer for all of us.

Good luck, and all my love to every family in the program now, and every family who will be fortunate enough to participate in the future.  And thank you from the bottom of my heart to everyone at ECPHP.   I miss you all!


  1. Christy,
    That was a beautiful post. It brought back so many wonderful memories of ECPHP. I wish you and Michael the very best as you move on. We left 2 years ago, and still think it was the best thing that we did for our son, Marc, at age 2. Thank you for sharing this wonderful experience. UCLA ECPHP will always hold a special place in our hearts. They formed the foundation for everything (parent training and support, obtaining services and mostly for changing our son's life!).
    Warm Regards,
    Anya (Parent of the Crystals Room 2009)

  2. Christy,
    I am so very proud of you and all that you have accomplished for the Love of Michael! I can only begin to understand the road you are travelling as a Family. As your Mom and Michael's 'Grammy', I am here to share in all your joy, all your sorrow, all your triumphs, and all your tears. Wherever this journey leads, know that you are never alone. Although I may be across the miles, I am only a heartbeat away. My Love and Admiration to you Always,


  3. My son is recently diagnosed (Oct 13 2011) and he's almost 4. I'm querying our insurance coverage for this program. I've heard so many glowing reviews and I can't afford to waste him anymore time. Thank you for sharing your experience!

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