My Letter to Scott Sloan and Jennifer– People with autism are not “retards.”

 

 

 

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The day before I wrote this, I was listening to a radio program that was discussing some changes that were happening at King’s Island, an amusement park, here in Cincinnati. A caller, a woman named Jennifer, called people with autism “retarded.” I wrote this hoping someone would read it. I never imagined Scott Sloan would on the air.

From: Rebecca Date: June 13, 2013, 5:10:28 PM  EDT To: “sloanie@700wlw.com” < sloanie@700wlw.com> Subject: Listener Email from  http://www.700wlw.com

Hello,
Honestly, this morning was the first time I have ever listened  to your show. My husband listens daily, and he text to say, “Hey Babe, turn the  radio on 700 AM. The topic is about autism. I am on hold to comment.” So I  turned it on. I tuned in to hear Jennifer.
Before I comment on Jennifer,  here’s a little background. I am mommy to Liam, a five year old, little boy. He  has blue eyes, blonde hair, and is completely adorable. Looking at my son, you  would not know he has a disability. This is true for many children on the  spectrum. However, Liam has moderate functioning autism, expressive receptive  language disorder, and encephalopathy. Liam is also a 90 pound, almost 4 foot  tall, five year old. He’s a really big kiddo. He is not overweight because of  his diet. Aside from autism, Liam has hypothyroidism. He was 8 pounds 12 ounces  at birth, 22 pounds at 6 weeks, 45 pounds by 1. He was breastfed most of this  time. He has metabolic issues that prevent him from processing calories  correctly. People see him, and assume he eats junk food all day. He is on a  gluten free/casein free/soy free/ Specific Carbohydrate Diet. He can’t have  sugar, fast food, processed foods. He eats better than most children.
Originally, I was on hold to tell you about our King’s Island adventure two  years ago. We were participating in the JDRF walk for the cure. We have another  son who has juvenile diabetes, and wears an insulin pump. Liam was newly  diagnosed–just a couple of weeks. I was in overdrive learning about autism,  implementing his new diet, processing everything that was happening to our  family. Truly, I was heartbroken. My beautiful baby, my son– I felt like he had  been stolen from me. There’s no other way to say it, but I was devastated.  Anyway, in my head I assumed, we will go, we’ll wait like everyone else, someone  will get sunburned, someone may get a scrape, we’ll play hard, the kids will  fall asleep on the way home, and wake up tomorrow begging to go back.  Boy,…
A day at King’s Island for a special needs family,…
Traveling with our children is never easy. Dietary restrictions limit eating away from home, which means we have to pack every snack and meal before  we leave the house. We have diaper bags, diabetes kits with emergency supplies,  extra changes of clothes just in case, medicines, our go to tricks to get the  medicines down, special needs stroller, and all the other typical family stuff.  We look like we’re going on a camp out everywhere we go. A few years into it, it  doesn’t bother me. It has become our normal, but back then, it was all new.  Honestly, I was self-conscious. When you are put into difficult situations,  you’re forced to evaluate yourself. What matters? What doesn’t? How shallow are  you? What needs to change within yourself to make a situation work?  So  back to our day, we participate in the walk, and enter the park.  We make  our way to the little kids part, and immediately my little guy’s interest is  sparked when he spots the train. Of course, the older two kids had their own  plans, and the train was not part of it. So my husband took the older two, and  Liam and I stayed behind to chug along. Are line passes important for special  needs families? You can decide. Luckily, there was no line when we stepped up to  board the kiddy train. He loved the train. He completely relaxed, and enjoyed  the trees and scenery. I used to be able to tell you, exactly to the second, how  long that train ride was, that info has left me, but it was around two minutes.  We rode the train 38 times. Every two minutes, my son would have a complete  meltdown. He would scream and cry. He would fight me and the worker. In a  hundred degree weather, I’m wrestling a 55 pound, three year old (at that time)  every two minutes, 38 times in a row. Well,…it wasn’t exactly every two  minutes. A line had begun to form. So after every ride, we would go to the end  of the line, where my son would scream to the top of his lungs, gouge my eyes,  pull my hair out in patches, scratch my face until we were back on the train.   Is he a horrible, mean tyrant? No. No, he’s not. Expressive receptive  language disorder means a person does not understand what your are saying, and  they can not verbally communicate their needs. When your only means to  communicate anger and frustration is through action, how do you do it? Remember,  you are three. I will tell you how, you beat the crap out of something or  someone until they release you. The whispers and stares were so crushing.  Remember, a few weeks prior to this, my son only had a speech delay, and in my  mind, I was very much like the parents who were staring at me. After what felt  like an emotional eternity for me, I can only imagine how confused and upset my  kiddo was, Liam spotted a mini, race car ride. On the train, I had been able to  ride with him. On this ride, I could not. I tried to explain to the operator, my  son has autism, and he may have to stop the ride if Liam could not tolerate it.  It’s not like a typical, scared child, who is able to calm, self-sooth, and move  on fairly quickly. Three or four minutes of over-stimulation may take hours and  hours for my son to get over. On top of that, he would be so traumatized, he  would never attempt another ride like that again, ever. Example, a lap dog  snapped at him when he was 18 months old. He has an alarming anxiety and fear of  dogs to this day.  As the ride started, I could tell he was going to lose  it. Sure enough, he started wailing, reaching for me, and trying to find an  escape. I quickly asked the operator to stop the ride. He told me he couldn’t,  and crying wouldn’t hurt Liam. Well, obviously this person knew nothing about  mama bears and their cubs. He probably still remembers me– the mom who ripped  him a new asshole, and climbed over the railing to get my kid. Needless to say,  he stopped the ride. My child was shaking uncontrollably. After quite awhile of  hugs and deep pressure, he saw a water maze. He loves water. So, off we go. This  water maze, my word, what to say? He’s autistic, every bead of water was  amazing. Of course he’s not going to run strait through like a typical child. He  was fascinated. So he’s running back and forth, going in the exit, he won’t go  all the way through. I’m chasing him back and forth, trying to get him because  this operator, another gem, is continually telling me my child is breaking the  rules. Apparently, standing inside the maze, up against a mesh wall, watching  water spray (no one else in the maze) is a big rule breaker. (Laughing) So I  wrestle Liam into my arms, and get my butt whipped again, while getting drenched  to my underwear. By this point, I was ready to have a meltdown of my own. Was it  always going to be this way? Would we never be able to do “normal” stuff? The  day was really a blur. I think I cried the whole way home. The kids slept, but  that was the one and only time we have been to King’s Island. Fast forward to  present day, and I think it is absolutely something we would try again, but we  can’t afford it. Liam has come so far, developmentally, due to great therapist  and biomedical interventions. However, those treatments cost thousands of  dollars, and leave little money for things like passes to King’s Island or  family vacations. Don’t feel sorry for us (smiling), my non verbal son is now  verbal, just one of the many gains he has made. So to this mornings topic,  King’s Island should simply require medical documentation to purchase a pass to  skip line. Kids who have this pass shouldn’t have to come back in an hour. They  should be able to ride, and move on. Should we teach our kids patience? If  possible, of course we should! Trust me, turn-taking, patience, waiting, manners  are all on our skills agenda. It’s not just lines that they have trouble with,  it is every need or want. My son does not relent until he gets what he wants or  needs–or I come up with a damn good substitute. We work on these skills in  various therapies. King’s Island is not the place to teach these skills to  autistic children.
Now to Jennifer…
Dear Jennifer,
As  I listened to you talk, I was giving you a lot of understanding, patience, and  compassion. After all, it was clear you were ignorant to the world of autism.  Most people are unless it effects their life in some way. Mother to mother, if  you weren’t able to communicate verbally with your children, how would you feel?  Some parents never know what their child is feeling, thinking, when they’re  hurt, in pain, sad, happy. The simple act of giving a hug is too much for their  children. We don’t sleep because our children only need an hour or two. When we  do sleep, there’s an overwhelming sense of anxiety and fear. Example, this  morning, in my sleep, my mother’s intuition started talking. Wake up! Get up! I  woke up to see my front door wide open, and my five year old was gone. You can’t  imagine the fear, desperation, helplessness that overwhelms you. Ever lost one  of your kiddos in the store for a minute? Remember how upset you were? Imagine  if that child couldn’t speak, yell for help, or recognize danger. But, the same  child can figure out how to unlock every lock you put on your doors, no matter  how high up you install the locks. Luckily, my son is gifted with an amazing  memory, and as I was running around, barefoot in my pajamas, he came climbing up  the very short, hiking trail behind our house. This morning could have ended a  lot differently. Autistic children die all the time from wandering. Needless to  say, we’re adding yet another lock. How excited were you when your children  potty trained? Yay! No more diapers, right? Wrong. My son is in diapers at five.  I have changed more diapers than a typical mom could even imagine.
Imagine restraining your child every single time you took him to an appointment  where he had to be examined. Imagine hearing him scream, “Mommy help me! I’m a  good boy! Somebody do something.” As hard as you try, you can’t help him  understand why this is happening. While you’re trying to explain to your kids  why special needs kids get to pass them in line, I’m trying to teach my son to  point, look in my eyes, say mommy. Thank God we’ve moved passed this, but we  used to have to restrain my son twice a day to brush his teeth. At one point,  every transition was a meltdown or tantrum. Do you know what a transition is?  It’s moving from one activity to the next. Do you know how many times per day  people change activities? That’s how many meltdowns my son used to experience.  Autistic children’s ability to process their senses and understand the world  around them is often very limited. A mother’s touch could feel like fire, the  buzzing of a dishwasher may send them over the edge because it hurts their ears,  large crowds can cause anxiety. Smelling your perfume could give my son an  instant headache, and make him barf on the back of your legs while we’re  standing in line behind you.
You should count your blessings that your  children are healthy, that going to an amusement park is something your family  enjoys so much, you buy season passes. You should consider the parents watching  their children die, or the parents who worry that they have to live forever so  they can take care of their children. Who else is going to show them love and  compassion? Certainly not a person like you. Google compassion and thankfulness,  you may benefit from a crash course.
As the mother of an autistic child  and a special education teacher, as I listened to you talk, I was reminded how  important autism awareness is for the general public. I didn’t really judge you,  up to the point you called my son and his peers retarded. He is not retarded. In  fact, he is gifted. At that point, the mama bear came out in me, and honestly I  willed horrible things to happen to you. Mainly, because you became a pest  control problem at that point. Set a trap, let her chew off her own leg, maybe  she will hit a main. But, it quickly dawned on me, your attitude toward others  will seal your own fate. There was no reason to wish bad things on you.
I feel so grateful, thankful, and blessed that my beautiful, amazing, smart,  often challenging, little man was given to me, and not one of the Jennifers of  the world.
Sincerely,
Liam’s mommy, Rebecca,
P.S.  In the event our family does make it to King’s Island this year, I hope we see  you there. I will be the one with the “obese retard” passing you and your  children in line, waving. 😉
To the host my husband calls “Sloanie,”  (I’m guessing this is an affectionate mannism, laughing), thank you. Thank you  for covering this topic, for going to bat for these kids, and for reading this  rant.
You are awesome,
Rebecca

 

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