Tuesday, July 19, 2011

He's Not Retarded!

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.

12 comments:

Bean said...

Praying for you, I can only imagine how wounding the remarks are to a mothers tender heart. I don't think people mean to come across as rude, and I know that doesn't make it less hurtful, but try not to take it personally and keep educating people about autism.

Peace be with you,

Rita Mosquita said...

I have found that the world is full of self-righteous, know it all, judgemental, narcissistic people. I know too many. I have read that there is a growing epidemic of this problem in people due to the American culture. I try to avoid them, stay away from them, be quiet around them, not show anger. I don't think it makes any difference to them. I think it makes them more the way they are. What are the options? I wish I knew. Sometimes I want to tell these people off. One of these types, my 60 year old brother, laughs hysterically when he gets me upset. He likes to pick at people. At this time, if he and I were to be in the same room, I would slug him. The people who are like this don't have a clue about Micah. They just think they do. They are as ignorant as the day is long and think they know it all.

LizBeth said...

Paula, I'm so sorry for the hurt you suffer. Times like these it doesn't even help much to know you aren't alone. It still hurts. Sounds like you are making plenty of time for Abbie and how she experiences autism, too. That's great. Someone did a study of siblings of special needs children several years ago. Most people assume they will not be well adjusted. Actually, they proved to be just a bit better adjusted than kids from so-called "normal" families. God bless, Liz

Scarlett said...

I am so sorry you face such meanness. I find it awful that people in our society find it so easy to be mean. I deal with it at my job. Yes, I get paid to deal with it, but no one likes to get bullied. I see it as being bullied what you are describing with your son. Your sweet wonderful daughter sounds awesome! She may be your best advocate for education and understanding. Hang in there, my prayers are with you. Don't be afraid to vent here to us when you need to!

Angela said...

I thank the Lord that Micah has been born into a loving family who are really caring for him. I am a pastor's wife here in the UK. We have two families with autistic children in our church, and also people from a nearby residential home for people with various similar impairments who worship with us regularly.
I am constantly humbled by the support and love shown to these folk by their carers - and grateful that our felowship is so welcoming.
You have a long road ahead of you - I pray that you will find supporting friends on the journey, and that God will continue to give you [and your little daughter] words of grace and wisdom as you seek to help others understand the challenges Micah and the family face each day.
God bless you x x

[stumbled across you thru LizBeth http://timetostartanewblog.blogspot.com/ ]

Carrie said...

Paula,

I am so sorry...You post was beautiful...
C~

Lanita said...

Have you heard of Temple Grandin? If not, here is her web site: http://www.templegrandin.com/

You are doing an awesome job raising your special son. I am going to share your article on my blog. I have some friends with autistic children.

Thank you for your transparency. I know it is not easy to share like you do.

Jan said...

Paula, you and your family are beautiful people, it is nobody's 'fault' that Micah has autism - its just life. He's a beautiful intelligent child who has some extra needs and needs extra care. You all are examples of how although things can be very difficult; how love, support, education and understanding can make very very difficult circumstances feel a bit better.
well that's just my view. Please never reproach yourselves - enjoy him and all your times together.

The Craftivist said...

I've really enjoyed reading your blog and I think that this is a particularly important post. I can understand some of what you're going through, not from the perspective of a parent with an autistic child, but from the perspective of the child of a parent with cerebral palsy.

My mother was physically disabled, she couldn't walk and her hands hand the distinctive CP curl to them. She went everywhere in a scooter or a wheelchair, she suffered excruciating spasms among other physical difficulties.

I grew up dealing regularly with the stares, the questions, the snap judgements. I can remember being put through a battery of intelligence tests myself as a child because everyone assumed that the child of a handicapped person would also be handicapped in some way and since I was clearly fine physically these experts assumed I had to be "deficient" mentally. People always felt sorry for my mother and for myself but really I look back at it now as a blessing. I learned things from my mother and from being subjected to those snap judgements from other people that I wouldn't have learned otherwise, including a deeper sense of compassion.

I wish I could tell you that it gets better but I can't do that for sure. But I can tell you that dealing with these things will likely make you, your husband, your daughter AND your son stronger.

Gill - That British Woman said...

well said, I popped by from LizBeth's blog who pointed out your post.

There are such a lot of people who just don't understand these things so label people wrongly......

Gill in Canada

Anonymous said...

I am sorry you had to go through that. I have been very lucky in my community. Everyone has been understanding of my daughters autism. More than once, I have had to leave with her screaming in my arms. As she has grown, these incidents have become few and far between. She grows everyday. Everyday, I see new lights in her and everyday she communicates just a little better. I know it will be the same for you son. There are a lot of us who know all that you are feeling. You are not alone. Blessings
Jeanette

Anonymous said...

When my oldest was in the midst of various tests to find out what was "wrong" with him, we had an incident with a cashier at a supercenter. We had just spent about an hour or two in the store stocking up on necessities, and our oldest was just finally getting anxious. He had behaved so well throughout. The cashier told me I should put him on Ritalin.

I just saw red at that point. I told him I'd be happy to leave and not purchase our two cartfuls of groceries and began to take the kids out. Our friend was the manager and apologized profusely to us, and told the cashier to leave and he would handle our order. I was still insistent on not purchasing anything, but my husband advised me to leave for a minute.

I still have issues with my youngest boy as well. I've learned to just respond with "Ignorance is bliss...I wish I was as happy as you." No, it isn't nice, but the frustration of having the same conversations and disagreements for the last 10 years that I've been aware of Asperger's or Autism had just driven me to these comments.