This past week, I joined hundreds of autism advocates at the Autism Speaks to Washington National Autism Summit in Washington, D.C. For the first time, I was surrounded for three days by people in all walks of life who all walk one path together: raising a child with autism. We spoke with each other about our children: their challenges AND their abilities. We talked about how hard some things are – like not being able to hug our children. Not knowing what it is they need despite our every attempt to aid them in communication. We discussed the efforts being made within our states to help our children by securing services for them that would enable them to learn to communicate, to learn coping skills in order not to hurt themselves or others, and to be able to function as independently as possible as they grow into adults. I heard over and over that parents were not out to “normalize”, “fix”, or even “cure” their kid. We all just want our children to experience life to its fullest, however they are able.We recognize autism in our child, and while autism certainly challenges us and our children, we celebrate the children we have been blessed to raise.
My heart was greatly saddened when I read Suzanne Wright’s blog post called “A Call to Action” on the Autism Speaks website the night before the summit. Suzanne and Bob Wright founded Autism Speaks in 2005. The article aptly describes what many, if not the majority, of families living with autism face every day:
“Maybe they have been up all night caring for their teenage child who’s having a seizure.
Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.
Maybe their child has been trying to bite them or themselves.
Maybe they can’t afford the trip to a doctor specializing in autism.
Maybe there is a waiting-list for ABA, speech and OT.
Maybe their insurance won’t pay.
Maybe they don’t have the money to pay a special lawyer to fight for school services.”
Of these descriptions, she says, “This is autism.”
She says that these families are not living. They are existing. Breathing. Eating. Maybe sleeping. Working 24/7. But not living.
“Life is lived moment-to-moment.
In anticipation of the child’s next move.
In despair.
In fear of the future.”
I cannot truthfully write that these statements are completely untrue. I know families who live the above every day. BUT, it is not the whole truth. Nor does it have to be the only truth for any parent.
When we first learned about my son’s autism, there was a point of devastation. There was a period of despair and fear. There was a time when I was barely existing. I lived with a thousand unanswered questions every single day. But this is NOT autism.
No. My autistic son is not a devastation. His autism does not devastate him, nor us.
“For you formed my inward parts;
You knit me together in my mother’s womb.”
“I am fearfully and wonderfully made.”
Psalm 139:13-14
I no longer fear for his future. Wonder? Yes. Have some anxious thoughts? Sure. Plan? Absolutely.
“‘For I know the plans I have for you’, declares the Lord,
plans for welfare and NOT for calamity to give you a
FUTURE AND A HOPE.'”
Jeremiah 2911
“For this reason I say to you,
do not be anxious for your life.
Look at the birds of the air, that they do not sow,
neither do they reap nor gather into barns
and yet your heavenly Father feeds them.
Are you not worth much more than they?”
Matthew 6:26
Fear and anxiety are natural parts of the lives of parents – ALL PARENTS. These emotions are elevated for those caring for children with ANY disability, autism included.
But it does not mean that parents don’t see any good in their children. It doesn’t mean we wish our children dead. It doesn’t mean we wish we had never had them. It doesn’t mean we want to eradicate our children with autism. Experiencing these feelings mean that we want the very best for our children and that we recognize that we don’t always have the control to secure the very best, whatever that means, for them.
The parents I met at the Autism Summit, hosted by Autism Speaks and founded by the woman whose article has set the autism world aflutter, ARE living. So are thousands of other families across the country. And so are autistic individuals themselves. Both children and adults.
Parents are loving their children. They are fighting to give their children what they deserve – a fair shot at living life to the fullest –
however that is defined for that child when they are young and unable to define it for themselves
, and however that child defines his/her life as an adult with autism. I love what Kerry Magro says in his book,
Defining Autism From the Heart, “Autism can’t define me.
I define autism.”
We define things by how we experience them. Autism is experienced differently, even radically so, in every person affected by it. It is therefore defined by the person experiencing autism. And parents with autistic children define their own lives by how they experience their child with autism. All are valid experiences because they are true for each person. One cannot tell another they are wrong for defining autism a certain way. But we need to be careful when expressing our own experiences with autism that we do not impose our experience on the lives of others touched by it and speak for them in doing so.
Suzanne is right on many counts regarding the struggles parents face. But she is wrong when she stops short of showing the joy, the hope and the LIFE that families are living, even as they change bedsheets every day. Even as they wake up at 5am (or earlier) every day. Even as they struggle to communicate with their child. Maybe she doesn’t have joy or hope, and all she sees are the hardships. Maybe she does see the joy and hope, but is choosing to focus on the hardship to show the necessity for help and change. She has every right to express her own personal feelings. But it’s not fair to generalize her own experience to such a large organization made up of all kinds of people with a variety of experiences with autism.
For those who are short of hope – take heart. You may not be able to control your child’s behavior. You may fear for his future when you are gone and he is old. You may be depleted of mental, physical and emotional capabilities. But there is life with autism.
“I came that they might have life, and have life abundantly.”
John 10:10
Because this is my blog and I am telling my story, the hope with which we are living is founded not in Autism Speaks, but in the person and work of Jesus Christ. He is the one who has already defeated the brokenness of man and is making all things new. He is the one on whom my son’s future rests. He is the one who breathes life into us. He is the one who grants immeasurable joy in the son whose challenges with autism would seemingly command the opposite.
I support most of the work that Autism Speaks is doing in fighting for the needs of children with autism. I fought with them on Capitol Hill speaking to Congressmen and senators. But Autism Speaks – through the words of its founder Suzanne Wright – does not speak for me. I bow to Jesus Christ who has spoken:
“These things I have spoken to you, so that in Me you may have peace.
In the world you have tribulation, but take courage;
I have overcome the world.”
John 16:33
May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.
Romans 15:13
~ Sarah Broady ~
Well spoken. Maybe you should forward it to Suzanne …
I'm so glad that there are summits like these where people in similar situations can come together and share their experiences. I'm really happy that you were able to attend.
I'm a new follower (found you through the new SITS fb group).
~Kim
http://www.2justByou.com
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