"When one door of happiness closes, another opens;
but often we look so long at the closed door that we do not see the one which has opened for us."
Helen Keller

Tuesday, June 29, 2010

Instead of a link to this "essay", I chose to copy it over to the blog so that it was more accessible to all the readers. The Autism speaks blog is always posting such wonderful essays like this written by parents and others affected by autism...sometimes by children themselves that are on the spectrum. This specific essay should empower all of us to know that it is possible...there can be a "remission" for children with autism...it comes at different times for different children, and may not be possible for all, but like this mother said "Ignorance holds you back, knowledge is power."
Many of you have questioned over the last year either to me or to others when I take the time "to breathe" and I typically answer with all the things that we do as a family, as a couple, by myself...but honestly, what I really want to answer is "I will take time to breathe when my child can talk, communicate, and play just like yours." So, next time you question when I breathe, please remember the difference between my life and yours, between my personality and yours, between my personal experiences and yours...and I can promise you that I know you also have obstacles you are facing, and I will never question you!

In Their Own Words – Autism Remission?
June 28, 2010


This “In Their Own Words” essay was submitted by Orfa De armas of Seattle, Wash. who has a son with autism.


"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 lifelong 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 se. 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 snowstorms, 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!"

No comments:

Post a Comment

Autism and Our Family

"Autism"----It's one word that can change the life of a child and family in so many ways. Autism Spectrum Disorders are being diagnosed at a rate of 1 in 68 children currently. If you do not already know someone that has been diagnosed, the statistics say it won't be long before you do.

Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!

Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.

We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.

Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.