“What a brat.” (eyeroll)
“Oh my gosh, why would she bring him out in public?”
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.
I once had a woman pass us, and then back up her cart, so she could get an extra long look at my son with autism, Noah, melting down and pulling my hair. I sincerely needed help. None was offered.
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. People do not know what we endure.
By virtue of our life experience, we are in a great position to help them overcome their ignorance.
I thought of a way to help educate our local community and I hope this may serve as template for you, too.
It is general enough that with some tweaking, it could be used for educators, church leadership, camp counselors, restaurants, etc.
Dear Store Management Team,
My name is *** and I am a regular shopper in your store.
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. Sadly, this affects the central nervous system profoundly causing poor impulse control, verbal aggression and acting out.
There are no physical characteristics associated with this condition, so **** looks like any other kid.
To an outsider, this looks like extremely bratty behavior and poor parenting. For many years, I ensured **** was cared for so I could shop at your store.
Yet, on recent visits with my son, we have been the subject of many stares, eyerolls 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 eight 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?” He cannot articulate his emotions, but, he still has them.
As 1 in 29 boys now suffer with autism, behavior like this is going to be more and more common.
So, I am writing to ask you to lead by example. When you and members of your staff encounter my son and others like him, please ignore the undesirable behavior.
While it seems counterintuitive, it shows these children that their wants/needs will not be met when they act out. Also, 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. These parents have been through so much already.
Perhaps, if your team can demonstrate compassion in these situations, patrons will 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.
Happy letter sending!