Monday, February 21, 2011

Why Autism Awareness Matters: When Ignorance Hurts

Let me start this article by telling you this true little story which happened to me recently. It's a pretty typical example of the level of awareness that most people have regarding families who are raising kids with special needs. The fact that I have special needs kids is not usually discussed when I meet someone for the first time, so I cannot even remember why in the world it came up during the situation I'm about to describe, but it did. I was at a social event in honor of a cherished friend and was simply making conversation with a couple of ladies who didn't know anyone. My mom and dad always taught us to look for people who seem alone in the room and make them feel comfortable. So basically that's what I was doing and the topic of kids and school came up. For some reason I explained that two of my children have special needs. One of the ladies (who was very nice, by the way) replied, "All kids have special needs." As I just explained, this event was all about honoring one fine lady, so I felt it was neither the time nor the place to try and educate a total stranger and create even a hint of awkwardness. Because of this I very politely smiled and said, "Well, yes, that's true. Every child does have very unique and individual needs," and then changed the subject. Inside my heart was breaking.

You see, that mindset completely demeans and dismisses the extreme effort made on the part of parents whose children really do have special needs. Even more than this, it devalues the courage and immeasurable work on the part of the kids themselves. Before I had kids with special needs I was so completely ignorant of this. Because of our situation I am now intimately aware of how many everyday, mundane, "simple" things in life most of us take for granted because they come naturally to neuro-typical children. While most parents are signing their kids up for every sport or activity under the sun, parents of kids with special needs are having specialists come into their home for 2+ hours each day so their kids can learn to use a button, a toothbrush, pretend, use a single word, on and on and on. Did you know that there are 17 steps taken for using the toilet? Each of which must be taught one by one, over a period of months, to a 4/5/6 year old child with special needs who doesn't just pick up on it the way most two-year-olds can? Most kids are able to learn the rules of baseball or soccer at age 7, but kids with special needs are trying to learn the most basic social rules so they can tolerate being in public walking into a grocery store with mom.

We are currently facing some behavioral issues with our 10 year old that we have no problem resolving with our 5 year old who is neuro-typical. Even though we've had lots of parent training in the past, it has become necessary to again reach out for professional support. In order to access a behavioral therapist we need to attend this parent training (which we've done before) because of some new requirements that have been enacted. The class took three weeks and lasted 4 hours each week. After this, a teacher will spend an hour in our home to consult with us on a customized behavior plan, and then we will be placed on a waiting list for the specialist we originally requested. All of this investment because verbal communication is simply that difficult between us and our child with special needs. Every ounce of your time and energy as a parent of a child with special needs is spent learning how to communicate with them. Imagine your own child speaking a completely different language than you. In addition the rules of social engagement are entirely different in each of your minds, so the risk of misunderstanding is multiplied exponentially.

In 2009 this was our routine for three months (3x per week). I would awaken my 1 and 3 year old from their nap to pick up my 7 and 9 year old about 10 minutes early from school. The five of us would drive one hour to drop off the 7 year old at her socialization program, then the rest of us would cross town to drop of the 9 year old at her program. Both programs were conducted in older parts of little towns so the parking was always difficult and it's no thrill to keep getting little ones in and out of car seats. The two little ones and I would find somewhere to spend about 45 minutes before crossing town to pick up the 7 year old, then back across to get the 9 year old, and then we would end up at home about 4 hours after leaving the house. Was I glad to do it? Absolutely! But keep in mind I was not going to all this effort so that my kids could participate in some sort of elite sporting, academic or artistic endeavor. We did this so that they could develop basic skills in hopes of having success relating to peers on a playground or at a birthday party. Our efforts were rewarded when their teacher reported tremendous improvement in their ability to interact with not only peers, but also the teachers and aids. This is but one of many, many examples of what it means to have special needs.

My goal here is not to make you feel sorry for any parent, spouse, or child of a person with special needs. I'm so happy that my girls have us for parents. We love them more than life and we wouldn't trade them for the world! We are the very best parents for them that exist on the planet! And we are happy and eager to do whatever it takes to build a relationship with them and set them up for success in every area of life.

So what's my point?

All I'm trying to convey is this. Don't devalue the definition of "Special Needs" because of a lack of awareness of what that implies. Unless someone is raising a child of their own with special needs, they cannot possibly understand the meaning of the phrase. And I wouldn't want or expect them to! But if the next time you meet a parent of a special needs child an enormous amount of awestruck admiration for them rises up in your heart, then my goal in writing this will have been met.

This is a lesson for all of us. As a pastor people come to me with all kinds of problems and I'll be honest, when we started out in the ministry I used to hear what some people considered to be a problem or a trial and I would think it was the emotional equivalent of a hangnail. It would just frustrate me and I would think they were such a wimp. (And that was back in the days before I knew what a real trial was myself!) But I had to learn that I am in no position to judge the trial or pain of another human being. Even now, with all we've been through, when someone comes to me with a problem that seems heavy to them but by comparison not as major as some things I've faced, I genuinely take it to heart and offer up my most empathetic prayer and embrace. I believe in doing so that's loving people with a generous heart. And a generous heart will never withhold compassion, support, encouragement, or empathy. There's no problem too small for God to care about. If it matters to you, it matters to Him! Healing will flow through a generous heart. And the same healing that flows through me to others, will flow to me and my children.

A Special Note for Special Parents:
If we get offended by someone's ignorance then we are blocking the very healing process God is working out in our family. Turn that pain over to Jesus. He ALONE is acquainted with every pain of humanity. When He hung on that cross He actually took on Himself the very pain I felt in that room with that lady. So when I give it over to Him, He literally knows what I'm talking about because He experienced the actual event Himself, on my behalf! He did that so that I CAN give it to him (if I choose to). Why would I bear it in my own soul if He bore it for me? If we harbor those hurts, then we hurt the healing process.

Psalm 56:8-9
You number my wanderings; Put my tears into Your bottle; Are they not in Your book? When I cry out to You, Then my enemies will turn back; This I know, because God is for me.

Christa Proctor is writing a book about what her family has done to recover 2 girls from Autism. It is called Deception of Disease and will be ready for release early 2011. For information about the book go to: For inspirational resources from Christa go to:

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