Questions I’ve been pondering (originally written 7/26/07)

Where is the balance between helping Nate to be “normal” and accepting him for who he is? I am glad he is getting so many kinds of therapy and seems to be doing well with it. But is there a point where we are pushing him too much, not allowing him to be his own person?

No parent wants to hear their child has something “wrong.” We want our children’s lives to be easy, happy, so when we hear they have a condition that means things will be more difficult for them, it’s heartbreaking. But do I really know what’s going to make Nate happy when he’s older, or am I projecting what I would want for him (to have friends, to do well in school, to speak eloquently, to get married and have children)?

Estee Klar-Wolfond, a mother of a child with autism and an activist, writes,

“We do not hear about research that seeks to help autistic people be the best autistic people they can be. We need to redirect our attention to merging help (with the more disabling aspects of autism) with respect (respecting the autistic person’s right to exist) and realize that there is life beyond an over-simplified ‘cure.’ Further, helping the more disabling aspects of autism (anxiety, sensory issues) can exist outside of a ‘cure’ for autism.

I urge every parent (but for those who visit this blog, I bet I’m preaching to the choir), to actively seek out the alternatives and become proactive in not accepting strategies that change your child to ‘appear normal’ because they will ultimately be very damaging to their self-image as teenagers and adults, and we will have greater problems to contend with later.”

I don’t necessarily agree completely with the author (e.g., “self image” and self esteem often encourage us to look inside ourselves for our identity, when really our identity is in Christ), but she did make me think. I don’t want Nate to think we believe there’s something wrong with who he is. He does need therapy, because we want him to be able to communicate effectively and function in the world. But beyond his learning to talk and at least identify (if not understand) social mores, I don’t want to push him too much. (But what is too much? I don’t want to waste his most formative years when therapy and behavior “modification” and discipline and proactive parenting have the most impact! I don’t want to say, “Nate is just going to be this way,” just because it’s easier not to take action. As you can see, I haven’t worked this all out in my head, which is why this post is titled, “Questions.”)

I guess what I really need to keep my focus on is fostering Nate’s spiritual growth. I want him to become a believer in Christ, and I want him to be happy, however that happens. I want him to know we love him no matter what, that we enjoy his personality and want him to pursue his interests.