What Not to Say to the Parents of a Special Needs Child
When I sat down to put pen to paper, I found it very hard to start. My son is 25 and has low-functioning autism. We spend an inordinate amount of energy trying to appear to fit in and give the general public a positive view of autism, both for Zackary’s benefit and for the autism community at large. I cry when I read these statements and hope they will engender some compassion from the community at large.
“It’s such a shame that you didn’t know he had autism when he was born so you could have put him in an institution before you bonded with him.”
My neighbor said this to me one day completely out of the blue. I felt as if I had been punched in the stomach. I actually couldn't even respond; I was so hurt and dumbstruck.
To this day I still tear up when I think about this and it was over 20 years ago. I loved my son before he was born. I dreamed of what he would look like, what his personality would be, of how much fun we would have together, of how joyous it would be to watch him grow. I bonded with him well before he was born. My love for him was not diminished by his having autism but my world was rocked in ways that I could never have anticipated.
Sadly, I regarded the woman who made this comment as a friend. We had regular play dates, went to the beach, the children's museum and the park. To this day I still don't understand what prompted her to say this but I'm hoping it was a moment where her filter was down. Unfortunately, words do wound.
“There are special schools for children like him.”
When my son was 4, we lived in a small town in the suburbs surrounding Chicago. We had just moved there in May and since school would not start until September, I thought it would be nice if he went to a summer preschool to be around other children and play with them. It was run by our city's park district and was two hours a day. The facility was new and lovely. There was a large playground as well as a zero depth pool the children got to use. The staff to student supervision was high and I was extremely excited for him to join with other children in our community. I was also looking forward to meeting other moms and hopefully making friends.
I called the director of the program to explain our special circumstances and I had barely gotten the word autism out of my mouth when I was unceremoniously told "no", he was not welcome. Autism is a spectrum disorder. Abilities and challenges vary widely. I was floored that someone, who works with children, could be so dismissive. In retrospect, I'm not sure any child would have been well served by this woman. I certainly wouldn't have been happy having my "typical" child be in that kind of environment. Bullet dodged.
“I’m sorry but your son makes my daughter feel uncomfortable so I have to disinvite him to her graduation party.”
We were invited to the graduation celebration of a daughter of friends from college. We saw these people, including their daughter, about twice a month. The mom and I had regular breakfast "dates." We had picnics together, stayed at their vacation home with them and attended the bar and bat mitzvahs of both their children. We had known them for 20 years.
When we received the invitation to the daughter's graduation, my son, Zackary, was so excited. They were having a backyard picnic with Popeye's chicken (yum) and a steel drum band. Guests were going to be able to give the drums a try. My son loves drumming and was really looking forward to it.
Two days before the graduation we went shopping downtown Chicago to look for the perfect gift. We got her two Victoria's Secret sweatpants and matching hoodies. We thought for sure she would make good use of them when she started college in the fall.
The day before the party my friend called to disinvite my son. I had, again, that feeling as if I'd been punched in the stomach, and in disbelief, was struck mute. I spent the day crying and lied to my son as to the reason we weren't attending the party. I couldn't bring myself to tell him the truth. Sadly, that incident damaged our relationship beyond repair.
Myth: Autism is a mental health disorder.
Autism is actually a neurological disorder. Brain scans of people with autism show brain abnormalities and altered neurotransmitter levels.
So, you're thinking of having another baby. Maybe you should find out its gender before it's born and abort it if it's a boy.”
Well over 90% of all children born with autism are male. My husband and I loved kids and wanted more. When I mentioned this fact to my sister-in-law, who I'm sure thought she was helping, she suggested I find out the gender and then kill my baby if it turned out it was a boy.
I completely support a woman's right to choose. That doesn't mean that I would interject and tell them what their choice should be. Does this mean she thought her nephew should have never been born? Abortion is an emotionally charged subject that is best left discussed with the parents and doctor. Please don't make the mistake of interjecting your opinion when it isn't asked for. The only thing it will do is cause problems amongst relatives. Answer when asked, otherwise, keep a lid on it.
“I worry one of my children will have a child with autism. I hope they have a prenatal test for it by then. I would definitely tell them to have an abortion."
Should I have taken that to mean that she thought my child should have never been born? Or that possibly he should have some unfortunate incident which results in his death? Would it be for the best? Would it mean that he was in a better place? Who tells people their child shouldn't exist?
I can't help you with your worries or calm your fears. Though it is widely believed that genetically susceptible people come into contact with an environmental trigger that develops into autism, there really are more questions than answers at this point. I will, however, be more than happy to share with you how despite everything, we choose to be happy and have crafted a meaningful life despite your feelings to the contrary.
Myth: Only boys have autism.
While most people affected by autism are male, girls can also be affected. They usually are diagnosed at an older age than boys due to their ability to “mask” their symptoms with better social skills.
“I believe disabled people should live, work and play together. Don't you? That way they can be with their own kind."
You mean like how black people should be with their own kind? And the Jews? Don't they live in tight-knit little communities where they don't even see anyone who isn't their "kind" unless it's the UPS man?
I believe people should grow where they are planted. Choose occupations that make their heart sing. Love with abandon and welcome everyone. No one benefits from exclusion. No one enjoys being excluded. People huddle together with their own "kind" for safety, not necessarily satisfaction. Live with your arms wide open.
“You are such a saint.”
Actually, I'm not. I lose my temper sometimes. I feel overwhelmed often. One minute I hope for a cure and the next I'm despondent that one will never come. My house is dirty more often than it is clean. My garden needs weeding and the grass is too long. I'm often envious of your perfect life even though I know that it's not as perfect as it seems. Please don't try to put emotional distance between us by making me seem like I'm something I'm not. I wasn't chosen by God for this job and if you were in my shoes, you would do the same. We're more alike then we are dissimilar.
On a happy note
How sad it is that the most painful memories are the ones that stand out. So I'd like to take a moment to thank all the wonderful people out there who have made being a human here on planet earth a tremendous joy. Thank you to:
- My husband, whose joy and optimism make every day a pleasure.
- My sister who, in my opinion, is the best aunt anyone could ask for.
- My parents, for all their love and support through the good and the bad.
- Kasie, for being the best pal anyone with autism could ask for and just an all-around wonderful human being.
- Our doctor at Mayo Clinic, who helped us when no one else would.
- Our religious community, who welcomed us with open arms.
- The complete stranger who helped me when I was crying at the health club when my son was "having a moment."
There are many more I have missed and if I didn't thank you enough at the time, let me say "thank you" now. With you, our lives have been a little brighter.
© 2018 Chantelle Porter