If You Had a Son Like Mine
Sometimes, when I’m bored, or irritated, or just kind of noodling around, I like to think about what it would be like if more people had a child like my son Jack.
You know, a great big tall 13-year old who wears heavy black boots from November until May.
A teenager who dumps ice in the sink all day, and takes medication to soothe the slithering snake of anxiety that wraps around his soul.
A child with a body in the throes of adolescence, but a mind that is cognitively a little stuck—who watches Disney movies and bakes cakes and thinks cars cost around five dollars.
A boy with autism.
Lawmakers, policy writers, teachers, the guy at the deli counter, scientists, the clergy.
The woman who frosts the cakes at our favorite bakery, and the man in charge of deciding where the stop signs go around town.
If more people had a child like Jack, we wouldn’t need words like awareness or advocacy, and no one, in a bazillion years, would use the word retard.
April would just be a regular old month for spring flowers and budding green leaves on the trees, instead of blue lightbulbs and puzzle-piece ribbons.
Science would come up with a way to invent the silent ice cube, one that drops to the bottom of the sink without a sound.
Group homes would cost a nickel.
Marriage counseling would be a required activity for all couples, followed by dinner and drinks at a great restaurant.
Genetic testing would be performed in-office.
Life skills would be a part of mainstream education. Every kid in high school would learn how to change a tire and shop for groceries and make grilled cheese sandwiches.
Jack knows how to make a grilled cheese sandwich.
Don’t get me wrong. I am not wishing for more autism. Oh, believe me you, I have had enough autism to last a lifetime. I guess I’m just wishing other people could enjoy the, uh, perspective that invariably accompanies this diagnosis.
I mean, imagine! Imagine if people in the college admissions office had a child like my boy Jack. I promise you, the application process would be much different. Not only the application process, but the attitude about college in general–the worries about Ivy League schools and who goes to Harvard and what your SAT scores should be.
After all, it is not where you go, but who you are that counts.
Jack is not going to Harvard.
He’ll never take the SAT’s.
Still, he is whole. He is smart. He is important.
Then there are the folks who work at an airport. I know for a fact, that if one of them had a kid who stood in line and struggled to take his shoes off and then hesitated before walking into that big scanner thingy, well, things would change.
Maybe they would offer a small, discreet card when we got our tickets.
Traveling with autism.
Maybe they would offer training to the employees in the security department so they would be patient and instead of that little chin lift they do to let people know it’s their turn for the big scanner thingy, they would call the next person forward in a strong, loud voice.
Yes, you, buddy! It’s your turn.
They would learn that we live in a non-verbal society, and sometimes a non-verbal society is very, very confusing for people like Jack, who work hard to decipher chin lifts and hand waves. It’s like sitting in French class without understanding one word of the language.
Oui, vous, Buddy! C’est à votre tour.
And how about the church? Can we talk about the church?
Don’t get me wrong. I love our church. Here in New Hampshire, our parish has gone out of its way to accommodate Jack—a boy who jumps and shrieks when the bells ring during Mass, who absorbs scripture so literally that he was afraid to eat the host during Communion because he, and I quote, did not want Jesus inside of him.
When I mention the church, I am speaking about Catholicism as a whole—an ancient religion steeped in tradition and ritual and history.
Autism has no tradition, and its history is unfolding as we speak. There is ritual, of course, but that has to do more with hand washing and lining a zillion Matchbox cars up in a row than genuflecting.
I ask you this: Where is autism’s place within faith?
I mean, it’s not like the Pope is going to have a bunch of kids and have to sit through an IEP meeting and listen to his son ask nine hundred and forty-two thousand times a day if there’s rain in the forecast.
Yet, at the same time, Jack’s complicated, mysterious mind deserves a chance to know God. In fact, he may be closer to the divine than any one of us. He is pure, and unguarded. He is willing to see things others can’t.
What if, somewhere in the many offices of the Catholic church, one person had a child like my son Jack?
The thing is, I am not trying to change our world. That would be silly. I am but a drop of water in an endless sea. I am one person, sitting at home in a mint green fleece from the clearance rack at Old Navy, trying—trying—not to scream because my 13-year old son with autism has just stomped down the stairs to asked Mom, where are you for the hundredth time and he really needs to go to bed before I lose my mind.
For real, people.
I know I can’t do this by myself. I am scared, and lonely, and worried.
But you. I keep coming back to you.
I feel like I know you.
I know you are good, and whole, and kind, and tender.
I know you will watch for him, and think of him, and remember the snake and the lost smile the next time you stop at the pharmacy.
I know if you ever get the chance to meet my boy, you will welcome him as if he was your own.
I have to think these things, you see, or I will go stark raving mad like a lunatic in mint green. I have to know there is a safety net beyond my raindrop—a great open sea of forgiveness, and pride, and patience, and progress.
Please, do me a favor. Take a second today, and ask yourself what you could do differently.
Be colorful.
Be creative.
Be fearless.
Help me make room for him.
February 12, 2018 @ 12:08 pm
I really enjoy your weekly email. I have son who is 12 non verbal and feel exactly as you have written. I can tell you one thing this world would be in a much better place with more children like Jack and my son Matthew. My son has taught more about whats really important about life than I could ever teach him.
February 12, 2018 @ 12:14 pm
I know it is hard not to take it personal when your child tells you to “shut up” while humming (as you mentioned on your facebook post today). In our case, it has helped me to remember three things when my child says something like that:
1. What sounds rude to many of us, may just be a problem with communication. I think the difference here is intent. We are currently helping her learn how to “soften” what she says.
For example, instead of saying a harsh “no” when being offered a food that she does not like, my child is learning to say “no thanks” with a friendly sounding intonation. It took a lot of practice, but she is getting there. I know that she is not rude when she sounds rude because true rudeness implies that the rude person is showing disdain for the other person. Our children are not disliking us, they are just trying to communicate, albeit in a way that might trigger others.
To say “shut up” may have been the fastest, most efficient way for your son to get you to stop humming. My child often sounds rude because she has a tendency to speak in sentences that are “short and succinct.”
2. Sensory sensitivities: Why would innocent humming result in such a harsh response? I recently read a blog by an autistic adult who stated that she heard all sounds in the room with the same intensity, unable to filter them. As a result, she had a hard time following what was being said and also focusing on her own thoughts. I have also seen that some sounds are really uncomfortable for some individuals, perhaps to those with hyperacute hearing or perfect recognition of pitch. We know a child on the spectrum who gets extremely distressed when others around him sing. He tends to yell to stop singing and complains that the singing sounds awful. I often wondered if it was because amateur singing tends to deviate from the perfect versions that may be heard on the radio, etc.
3. Anxiety: I suspect that at baseline, when my child is not showing overt signs of anxiety, she may still be anxious. There is so much unpredictability in every-day life, so much to get wrong socially and in terms of emotional regulation that she may constantly worry about it. And we do not punish her for her disability, but obviously there are natural consequences in every-day social interactions. In addition, sensory sensitivities may contribute to baseline anxiety. Anxiety makes it harder to access the right words and the right tone of voice. I think that may be true for most of us.
I suspect that when my child seems rude, she may already be anxious, may be distressed by sensory inputs, and unable to find the right words. It is not easy, but I feel that my child has been learning, slowly but surely, when we consistently, calmly model a “softer”, kinder way of communicating what she needs.
February 12, 2018 @ 12:39 pm
I’m in.
February 12, 2018 @ 1:01 pm
Thanks for sharing your family’s life with Jack. It is comforting to know your feelings of love, frustration, mis-adventures, etc., etc., are the same experienced by oso many parents with children on the Spectrum.
February 12, 2018 @ 1:02 pm
Also, there is the talk that possibly Barron Trump is on the autism spectrum. If he is and they are trying to hide it, that is their right but … I don’t even know what to say so I won’t say it.
Eunice Kennedy Shriver helped start Special Olympics in part as a response to the lack of empathy and respect for people with intellectual handicaps – like her sister Rosemary. A legacy. For sure.
February 12, 2018 @ 6:04 pm
My heart breaks that this seemed somewhat political.
February 12, 2018 @ 7:50 pm
I have to agree with Joanna. I am not highly educated in the Autism Spectrum but know that no one, even we ‘normal’, want or should have to deal with others judging our souls by what they want to believe they are seeing. Especially those with problems who are capable of knowing what their differences are…why torment them? I do believe that Eunice Kennedy did NOT advertise her child’s health. The public became aware, probably due to the Press, but… who needed to know WHY someone wants to help the weaker member of society? It’s the doing that matters.
February 13, 2018 @ 7:31 am
I promise you, Joanna, it’s not! I don’t write from that point of view.
February 15, 2018 @ 7:38 pm
Hi Carrie, I don’t want to confuse things, but I think that Joanna was commenting on someone else’s comments that seemed ‘political’. I feel sure she was just sad about that. Me too.
February 12, 2018 @ 3:11 pm
You both need a hug. 🙂 It works for me!
February 12, 2018 @ 4:37 pm
Hi Carrie, Once again, your words bring tears to my eyes. I don’t have a child with autism but I have you who is teaching me so much about it. I know I would like Jack, you and your whole family. Maybe someday I will see you and I will say “hello” to a friend who shares from her heart but whom I have never met in person but only in your blog.. You are authentic. You put all of yourself out there. I have compassion for you, Jack and your family. You take me into your life and I see the pain and the joy.
I do think it would help if some other people read this blog. The security people at the airport, the congregation at your church and other churches, parents and grandparents could all benefit.. Many of us just don’t know how to act or what to say to help but you are teaching us.. However, even before your blog, I have been aware of recognizing some children with autism.
Thank you.
February 12, 2018 @ 6:02 pm
Thank you for your thoughts and words. They help others so much.
February 12, 2018 @ 6:39 pm
Dear Carrie and Jack, I recently met a young man bagging groceries at Publix in Naples, FL. When he learned I was from Cleveland, we had a great conversation about LeBron James and the Cleveland Cavaliers and whether they will make it to the play-offs — as well as a quick discussion of why I was not a Cleveland Browns fan and why I did not care who won the Super Bowl. Yes, my sense was that he has autism, but my first reaction was that he really knew a lot about sports and was fun to talk to. Thanks for the weekly reminder to focus on the person not the labels!
February 12, 2018 @ 7:39 pm
Jack has a place in my heart.
February 12, 2018 @ 11:20 pm
❤️
February 12, 2018 @ 11:23 pm
What a heart felt post. I love every one of your posts, but, today especially struck home. I so admire your honesty and a look into Jack’s life. I have never met Jack and probably never will, but, I know others very similar to him and pray that people will open their hearts and welcome all of these kids (adults) in. God Bless.
February 15, 2018 @ 11:34 am
I have huge hopes that younger generations are growing up more understanding and that there will be a point where everyone is different, and everyone accepts that. Idealistic maybe, but I have to hang on to that hope x