Wednesday, May 19, 2010

Autism remission?

I breathe Autism.
I eat Autism.
I drink Autism.
I live to fight it and to win the battle.

So why am I so speechless? I should be celebrating today's news and jumping up and down with joy. Why do I feel so confused when we've kicked Autism in the butt so early in the game?

Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this life-long journey. Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (pervasive developmental disorder-not otherwise specified) we also got the news that he was no longer considered Autistic, per say. In order to explain this better, we were told that if our kid had cancer, he would now be in remission - so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place but for now, it's all good... It's all too good.

So, if this analogy is right, does that make Frankie an Autism survivor?

Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie's Autism and brainwashing myself to deal with it for life....Ever since we contemplated the possibility that our youngest son had Autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn't be scared to take on the fight. I've always believed that ignorance holds you back and that knowledge is power - so that's what I did: I learned. Autism became my thing - I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations - everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snow storms, hail and rain - not a minute went to waste. The efforts paid off but the reward was more than we bargained for.

Then...why on earth am I so shocked at what I heard today?
Perhaps I'm shocked because I never really expected to win the battle?
Perhaps because now I'm left without a purpose, without a mission?
Maybe because at one point this became more about me than about Frankie?
Is it because I feel that we belong in the Autism community and we will have no identity left once we are out?

I'm not sure of the reasons of why I feel so surprised at what the future holds for Frankie...The truth is that I just wished for him to survive and now I'm told that he can thrive and this is hard to process. I am, once again, scared but this time I'm scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can't this be the outcome of every family living with Autism? What is that magic ingredient we found without knowing?

So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel...Our tunnel was shorter than other families' tunnels but it was indeed a tunnel and it was very dark...but the light at the end is so bright, I might need to wear my shades all day long!

"It takes a Village to raise a child!"
Thank you, UW Intervention Team,
You made all the difference in the world for us!


amakeupartist said...

Hi Orfa,

Thank you for your beautifully written blog. My son was also diagnosed with ASD, at 2.5 yrs. It has been a long haul. In 2003, there was not a lot of info or belief of recovery. Now, in 2010 the info on ABA therapy, GFCF diet, all the great sites and bloggers, there is a plethora of information, recovery is possible. My son is also recovering. I have not had him diagnosed again, but I can see his advancement, he is integrated into 2nd, his speech has improved immesureably-he holds conversations, looks at you, loves to socialize, all the things "normal" kids do. There is hope, there is recovery. It takes a lot of work, perseverance and faith. Each child will advance to his capacity if the above in put into place.
God bless you and your family.

ORFA said...

Thank you so much for your comment - I am so glad you were able to relate...Recovery is indeed possible and there is a lot of hope for our kiddos!

Anonymous said...


I read your post on my Facebook through Autism Speaks and I was so uplifted to hear such wonderful news. Our son was diagnosed with ASD in August of 09, (26 months old) but I knew it much sooner than the official diagnosis. I immediately contacted the UW Autism Center and he has been seeing them since Oct of 2009. We have a long road ahead of us but Keith is making tremendous progress and he just celebrated his 3rd birthday. Thank you again for sharing your experience, you made this moms day!

ORFA said...

Keith's mom,
it was a surprise to me to see my blog posted on the Autism Speaks site and it was thanks to your comment here that I figured it out - thanks for your kind words, after the posting,it all has not been so easy to handle as some people have been very jugdmental of my blog entry. I can only speak for my particular case and my own experience with Autism but I can tell you that Keith will have a bright future because he has a mom who is alredy working to build it for him. Many blessings to you and to your family as you begin your personal journey.

Anonymous said...

so happy to see you giving 'props' to the UW Autism Center and this study (which my son is also a member of, on year behind your son). It is an exceptional approach to the treatment of autism in very young children and the UW research staff involved are phenomenal. I am so happy to hear of your son's successes. we just have to take it bird-by-bird and realize whatever remains of ASD in our children and their ability to live with us in the 'typical world' makes them extraordinary.