Sunday, June 26, 2011

Curebie

Last week I finished reading one of the books on my summer reading list, autism mom Kim Stagliano’s memoir, All I Can Handle: I’m No Mother Teresa: A Life Raising Three Daughters with Autism. As the mother of only one child with autism, I marveled at how well she juggles all the responsibilities of dealing with three children on the spectrum along with working as an autism advocate through her writing. Moreover, her positive attitude and sense of humor impressed me, especially considering some of the difficult times her family encountered along the way. At one point in the book, she describes herself as a “curebie,” and I identify with this label, as well. She explains that a curebie is “an autism parent who believes that, in our lifetime, we will be able to bring these kids to a point where they blend in with their peers and can live full, independent lives—through a combination of medical treatment, therapy, schooling, and a rosary that stretches from Connecticut to California.” Even though autism is typically characterized as a “lifelong disorder,” many parents like us pursue various therapies and interventions with the hope of curing our kids.

While one would think that wanting to cure children from a condition that impairs their ability to interact with other people, as well as often affecting their physical health, would be a positive goal, being a curebie makes one the target of some critics. This week I read a blog entry by an autism mom who asserted that she didn’t want to cure her child because she loves him just as he is. She believes that removing his autism would take away his personality and deny him of his true self. I noticed that her child is only three years old and wondered if she might feel differently about her position after dealing with autism for several years, especially during the turbulent teen years, when children on the spectrum may become aggressive as a result of hormonal changes. Perhaps she, indeed, thinks that her child’s behavior is part of his natural temperament and not the result of food sensitivities, toxic metal poisoning, yeast overgrowth, or other physical ailments. With Alex, we know that all of these conditions have affected him; therefore, we don’t believe that taking away the autism and all its accompanying symptoms would rob him of his identity; we know that when he’s feeling well, he’s an easygoing, happy, cooperative young man. That’s his true personality. Aside from autism parents who don’t want to change their children, some adults on the autism spectrum who are able to convey their feelings have asserted that wanting to cure autism is wrong. They tout neurodiversity, the acceptance of people who are not neuro-typical and eschew the term “normal” for those who are not on the autism spectrum. Certainly, parents of children with autism want acceptance for our children as they are, but we curebies want something better for our children: we want them to be the best they can be, so we keep searching for ways to make their lives easier. Like all parents, we love our children as they are, but we always want what’s best for them and are willing to move heaven and earth to help them attain that goal.

Last week, I watched an old rerun of Little House on the Prairie in which Mary thought she was overcoming blindness because she perceived images of light. After a doctor explained to her that she was not actually regaining her sight but sensing the warmth of sunlight that caused her brain to imagine that she saw light, she was devastated. She said that she wanted to see so that she could help her husband, who was also blind. Her father finally made her admit that she was also disappointed because she wanted to be able to see, as she confessed, “I wanted to see for me!” Similarly, I confess that I want Alex to be cured of autism because it would make life easier for me. Aside from the everyday responsibilities of overseeing his self care and making certain that he stays safe, I would welcome the relief of not having to worry that he can live independently if something happened to Ed and me. So, yes, I want Alex to be cured for me. However, I also unselfishly want Alex to be cured so that he can enjoy life to the fullest without physical ailments that he has dealt with through the years and without the sensory, communication, and social difficulties that make interacting with other people a struggle for him. At this point, I can’t see how that will happen and must rely on faith that God will take care of Alex. As I was reflecting on these thoughts the other night, one of my favorite country songs was playing in the background, “The Impossible” by Joe Nichols. The last few lines of this song offered me encouragement about our situation: “ 'Cause there’s no such thing as hopeless if you believe. Unsinkable ships sink; unbreakable walls break. Sometimes the things you think would never happen, happen just like that. Unbendable steel bends if the fury of the wind is unstoppable. I’ve learned to never underestimate the impossible.” Although a cure for autism seems impossible right now, as a curebie, I keep hoping and praying that one day Alex and all others affected by autism will overcome the obstacles, as the “unbreakable walls break,” and know that with God, nothing is impossible.

“The moon will be as bright as the sun, and the sun will be seven times brighter—like the light of seven days in one! So it will be when the Lord begins to heal His people and cure the wounds He gave them.” Isaiah 30:26

3 comments:

farmwifetwo said...

I have a 12yr old that has gone from mild non-verbal PDD to mild, passing for normal, will be independant NLD.

I have a nearly 10yr old on the severe end of the spectrum that is proving that just b/c it's severe doesn't mean you can't learn to speak or read. He will never be without care.

I get very, very tired of the "it'll change his personality". Having "cured" one that just makes me roll my eyes. Our "personalities" change btwn the age of 3 and 21. Children grow, learn, change... even those with autism.

Now... if I could only cure the other...

K. C. said...

I agree with farmwifetwo. Children change from day to day, those with autism and those without. Adults change, too, though usually not as drastically as children. I know I'm not the same person I was five years ago. I think the hard thing, the unfair thing, is not having the choice or the ability to change oneself or to grow in different ways.

As always, I love this post, Pam. XOXOXOXOXO

Pam Byrne said...

I totally agree with both of you! Our experiences in life shape our personalities. I've had to become more assertive to get Alex what he needs, which goes against my natural shyness. Farmwifetwo, we just keep praying for a cure for your youngest and my only so that they can live life to the fullest--and we can, too! Thanks, fellow moms, for your insightful comments!
Take care,
Pam