Thursday, July 21, 2011

"He's Not Retarded!"

(Here is a blog post written by my friend, Paula at "The Life of a Prairie Mom".)

Having a special needs child, I am learning first hand just how judgmental people can be. In their defense, I can only say that it is based on their own lack of knowledge or understanding. It doesn't happen often, but we are faced with it from time to time.

My wonderful husband is a truck driver and away from home for over a month at a time. Even out on the truck, he has been faced with those lacking knowledge.One day when going into a truck stop restaurant to get something to eat, my husband overheard a small group of truckers talking about autism. It was during the Autism Awareness month of April. Joe didn't pay much attention to the conversation until one trucker said that "autism is a label that professionals have put onto kids whose parents practice bad parenting skills." Bless my husband! He is a very quiet and thoughtful man, thinking through his thoughts before speaking. He asked the trucker what punishment a parent should use to correct a child who makes no eye contact? What punishment should a parent use to correct a child who doesn't speak or cannot feed themself? What punishment does a parent use to stop a child from screaming in terror or pain caused by the stimuli around them? As my husband continued asking the questions, going down a list of things we face daily with our son, the truckers got very quiet. Without saying it directly, they began to understand that our child is autistic and we face these things as a reality of autism and not a symptom of bad parenting. By the time my husband was done eating and leaving the restaurant, the outspoken trucker had filled out an Autism Speaks donation card that was available at the cash register.

Many times though, it seems that I am a magnet for the outspoken and the rude. Likely it is due to my nearly always having our son with me. Unfortunately, I am not as "thoughtful" and quick thinking as my dear husband. Most of the time, I am silenced by the sheer nerve of people. I cannot imagine what goes through a person's mind that gives them the idea that their hurtful comments are both wanted and appropriate. Last week, I was faced with likely one of the worst I have had thus far.I took our children to church in Oklahoma City, to the congregation that has become our family. On the way home, I stopped at a Denny's restaurant to get lunch before the 80+ mile trip home. The waiter looked to be in his 40's. Micah was in a "chatty" mood and was very vocal. When in this mood, he will mimic phrases that he has overheard or single syllables. On this day, he kept saying "Da-Da" and giggling. The waiter looked at Micah and said to me, "He talks really good for a retarded kid his age." I was stunned. What do you say to that? It was a very uncomfortable moment. I let him know that Micah was autistic. This waiter then said that I was being snowballed by the doctors. That the term "autism" was just a nicer way for doctors to say that your kid is retarded.

Our 5 yr old daughter was with us and after the waiter left the table, asked me what retarded meant and if Micah is retarded. This was not a conversation that I was prepared for. Our daughter adores her brother and is fully accepting of him as he is. I gave her a very simplistic definition of mental retardation to her and explained the difference between it and autism. I then reassured her that her little brother had autism and is not retarded. She and I have talked before about Micah being different from other kids. She is more than okay with that. In her words, it is okay - he is just being Micah.When the waiter returned to the table, Abbie let him know that her brother has autism. She also informed him that God allowed him to have it because it makes him special so he can help teach us how to have unconditional love for others. (Nice to know that she really does absorb our talks!)

I write of these experiences because there are many who go through this and don't speak up. As a parent to a special little one, I can say in all honesty that it is hurtful to have others judge and condemn without knowledge. Autistic children do not have mental retardation. They are not dumb. They are not useless and without a purpose in life. They are not spoiled brats having a temper tantrum. They are not someone to be hidden away from society.When Micah is in certain types of lighting, such as when a fluorescent light is blinking, it causes a pain reflex reaction. Someone once described it to me as being stung by a wasp inside your head. When you hear the cries, you can literally hear the pain in his voice. Imagine being lost in thought to the point of being unaware of others in the room. Suddenly, you have that pain reflex kick in. Or maybe you think you are alone and suddenly you find yourself in a place where you are in sheer terror. Not simply uneasy, but stark intense terror of your surroundings. Your only means of communication is to cry or scream.

Does this make you a spoiled, undisciplined brat?Imagine you are in a foreign country where you cannot speak or read the language. You literally can only make gestures to try and communicate your needs. Does this make you dumb? Even someone like Einstein would appear to be dumb in that situation! Just because an autistic child or adult cannot communicate in the same way that you do doesn't make them less intelligent.

My heart breaks daily for my son. I am past the stage of blaming myself for his autism due to being 45 yrs old when I had him. I am past the point of second-guessing everything that I did during the pregnancy, the preterm labor issues, and everything. I know in my heart that God would never have allowed Micah to be autistic if it was not something that He could use to show His grace and love. Micah has a purpose in life. If it is God's Will to heal him, it will happen. But, I firmly believe that one day Micah will be able to stand before others and give his testimony of what he has been able to do in his life through God's grace in spite of being autistic.

What I am not past yet is the pain and hurt that I feel when some unthinking person rips into me in the store because Micah is crying. I have literally been told to "shut the f-ing brat up" when he was crying at a store. I have had the snotty comments and judgments made from people who feel it is their duty to tell me how my parenting fails. I have had people, like that waiter, make judgments about my son that are ignorant at best. I thank the Lord that Micah doesn't yet understand the harsh words of others.

posted by Prairie Mom at 10:20 PM on Jul 19, 2011


Prairie Mom said...

Thank you dear one for sharing the post. It was an emotioal one for me to write. I felt the need to do so when I realised just how many times it happens and there is no one speaking out. The Lord blesses us with these special little ones and I truly believe that through loving them, we are getting a glimpse at the unconditional love that our Father in Heaven has for each of us.

Lanita said...

I think it is important to get the message out there that just because someone is different doesn't make them retarded or useless or less of a human. I have a friend with a little boy with autism, I have another friend with a little girl with cerebral palsy and I have another friend who just adopted a little boy with downs syndrome. People can be so cruel when they see these children. I am glad you shared your heart so people can see the impact their unkind words have on others. I am so glad that you are raising your little lady to love her brother unconditionally. She is a great example to others on how you treat those that are different. We ALL have some kind of "disability".