“Jesus, tell that kid to shut the &^%$ up.”
“What a brat.” (eyeroll)
People somehow believe they do and say these things under the guise of some protective invisible shield. They can see us, but somehow, we cannot hear and see them. I guess they think because our child is impaired, our sensory systems are compromised as well.
Of course, we can feel their stares three aisles over. We can hear their scoffs the way our kids hear their favorite theme song four rooms over with the door closed.
I once had a woman pass us, and then back up her cart, so she could get an extra long look at Noah melting down and pulling my hair. I sincerely needed help to extricate him from my scalp. None would be offered. I considered myself grateful she did not yank out her iphone and start filming.
My daughter recently observed on a drill we’d taken Noah on to condition him to public places that “The teenagers didn’t even look. It was the old people who were so mean.” Our behavioralist commented, “Mads, that is probably because they have a sibling or cousin with autism and they know all about it. Old people didn’t see nearly as much autism as we do today.”
Our silence and acceptance of this public fascination peppered with hostile and fearful undertones toward children with autism has to stop. We have NOTHING to be ashamed of. Everyone has to shop and get gas and go to the DMV and do their lives. While it would be great if we were given a pass when the “a” word entered our lives, it’s just not so. I thought of a way to help educate our local community here in New Lenox and I hope this may serve as a Truth Teller Template for you, should you find yourself in a similar situation with your child.
People do not know what we endure. They don’t know because they are uneducated about autism or are educated by the mainstream media. The media could inform but instead focuses on the many unfortunate, and often avoidable, deaths of children with autism while showcasing persuasive but unfounded theories about mass murders being autistic. By virtue of our life experience we are in a great position to help both the public and the media overcome their ignorance.
Realistically, they will have someone in their family with autism very soon and we want them to be prepared. While this scenario plays out at my local Target, it is general enough that with some tweaking, it could be used for educators, church leadership teams, camp counselors, restaurants, etc. Anyone is a public forum who will interact with our children needs to know this information and make a concerted effort to have successful interactions with them. A little bit of compassionate leadership goes a long way.
Also, I will be offering to hold sensitivity training for these folks. As well as my local police department, fire department, and anyone who wants to listen to me. If you can do this, please do it. When you are visible in your community and you share the truth, you gain the respect of your community and our movement collectively.
Dear Store Management Team,
My name is *** and I am a regular shopper in your store. Upon review of our receipts, since we activated our **** debit card, it appears my family spends about ****** annually at various *** locations. Loving that 5% discount!
Clearly an avid consumer, I’ve often found your (location) staff to be courteous and helpful, which is why I am reaching out to you today.
My son, **** has recently begun accompanying me to your store. He suffers a condition known as iatrogenic metabolic disorder, severe esophagitis and gastroenteritis. He has severe brain and immune system damage as a result of these conditions. Sadly, this affects the central nervous system profoundly causing poor impulse control, verbal aggression (nonsensical yelling) and acting out.
There are no physical characteristics associated with this condition, so *** looks like any other kid.
To an outsider looking in, this looks like extremely bratty behavior and poor parenting. For many years, I ensured *** was cared for so I could shop at your store with my other two children, whose behavior your associates have actually complimented numerous times.
Yet, on recent visits, with my ill son, we have been the subject of many stares, eye rolls, and unkind comments. Mostly by other patrons. Sometimes by staff members.
Of course, as the mom of a special kiddo, I have a pretty thick skin. Not much gets to me, but, my son who has endured prodding from doctors all over the country, medical procedures that show no sign of abatement, years of sleepless nights due to extraordinary pain and inflammation and upwards of 8 hours of therapy a day—is very much aware of what other people are saying.
While I know it may be confusing because he appears to be acting out, he can actually hear very clearly when someone says, “Maybe a good spanking would do him good…” or “God, leave him home, lady, give us all a break. How selfish can you be?” His cognitive functioning, meaning his ability to understand and process language has not been affected by his disorder. He cannot articulate his emotions, but, he still has them. He cannot form the words he wants to say, but he understands what is being said.
For a number of years, he was thought to have “autism”. As 1 in 29 boys now suffer this affliction and the number continues to rise, behavior like this is going to be more and more common in the marketplace.
So, I am writing to ask you to lead by example. When you and members of your staff encounter my son (his picture is attached) and others like him, please do what behavioralists at the masters and doctorate level of their field advise and contribute to the minimization of outbursts by ignoring this undesirable behavior.
While it seems counter-intuitive, it shows these children that their wants/needs will not be met when they act out in this manner. Also, if you could encourage your employees to show compassion toward the parents of these children; most moms and dads live in fear of simple tasks, like picking up routine household items, because of their child’s conduct. What looks like neglectful parenting, is in reality, an incredibly difficult medical condition that most doctors are ill equipped and unqualified to treat. These parents have been through so much already.
Perhaps, if your team can demonstrate strength and compassion in these situations, patrons will learn from them and choose empathy rather than condemnation, when encountering these families.
Thank you for your commitment to provide great service and a pleasant shopping environment for us and all the families of kids with special needs.
Your name here
Happy letter sending! XO The Rev
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