Hey There, Mama
Listen, I don’t like to give a lot of advice when it comes to autism. I mean, I hardly know what I’m doing and it’s all very complicated and every kid is different, right?
But after we chatted for a few minutes in the Target aisle, and I walked away with my cart and you walked away pushing yours while your little guy banged his feet, well, I thought of a few things I wished I’d said.
Maybe you could pretend I’m your much older sister. Like I told you, my son Jack was diagnosed with autism thirteen years ago.
We were on the cusp of a giant bubble that burst wide open—back when the only experience people had with the spectrum disorder was Dustin Hoffman in a movie called Rainman.
It was before IPads and horse therapy and autism support groups on the Internet.
Nowadays, there’s almost too much out there, you know? With the special diets and all the programs and articles about vaccinations.
It feels like if we make one wrong decision—if we choose horseback riding over art classes, or accidentally buy the wrong pretzels, this tender, vulnerable child will sink instead of swim and never get out of the basement or make a life for himself and it will be all our fault.
It won’t though. That’s the thing.
This is a very long road we’re traveling, and I’m telling you right now, you can’t burn yourself out early worrying about horses.
Please, learn from my mistakes.
In the very beginning, after the doctor looked me straight in the eye and announced our diagnosis like he was announcing the weather, all I saw was autism autism autism.
What I’m trying to say is I no longer saw my son. I saw a collection of symptoms and behaviors and things I needed to work on so he would be whole and good and right.
I wish I could tell you it’s getting better now that he’s a teenager, and it is, but still there are days when I look at Jack and I notice the diagnosis before I notice the boy.
Don’t do this.
You asked me if it gets easier, and I know I didn’t really answer you. I didn’t know what to say. I didn’t want to upset you.
No. It doesn’t exactly get easier.
I mean, some days will feel easy-breezy and he’ll eat what you made for dinner and sleep most of the night and you will think, huh. We’ve got this handled.
And other days he might scream through the whole meal and throw his dish to the floor and sleep for maybe a half hour and you’ll think, huh. I can’t go on like this forever.
Autism is forever. But that doesn’t mean it has to be terrible and consume you completely until you can’t think of anything else and you neglect yourself and your marriage and your other kids.
Can I be blunt for just a moment? I hope you can forgive me, because I’m really not a blunt person, but there are a few things I think are important.
First of all, for the love of all things holy, teach that child to sleep.
That’s right. You heard me. Help him get on the family’s sleep schedule.
You need sleep. He needs sleep. You all need sleep to survive autism and be decent human beings and kiss each other good-bye in the morning and smile at one another across the table at night.
You know the deal. Establish a routine. Have him in his own bed in a dark room. Calmly put him back as many times as it takes.
And if none of that works, there is a wonderful thing called Melatonin in the aisle at Walgreens, and normally I would never suggest medication but this stuff is pretty safe and natural and does wonders.
Second, throw away your timeline. Throw away the timeline of middle school dances and drivers licenses and graduations and college applications. They are meaningless in your new world.
You live on autism’s timeline now. It’s different. It’s slower, and the pace is a little more gentle. And if you bring yourself to succumb to it just a little bit, well, you’ll feel like a thousand pound weight has been lifted from your shoulders.
Oh, and another thing. Don’t be all up in the teacher’s grill.
That sounded so gangster, didn’t it? I’ve waited my whole life to use that line and I think I finally found the perfect opportunity.
Don’t be all up in that teacher’s grill.
But, seriously, I mean it. Let the teacher, the para, the occupational therapist, the speech pathologist, the librarian, the person who serves hot lunch, the playground monitor, and the principal do their jobs.
Their job is not to make you feel better that your child has autism or to hold your hand or to promise you that your kid will get the very newest IPad in the whole school. They have a whole bunch of kids exactly like yours and also exactly not like yours and they need to teach each one.
Their job is to grow his world. It’s to introduce him to concepts and learning skills and sliced pears in a plastic cup. It’s their job to make him wait in line for the slide. Stand back, and let them do it.
Your job is to be his mother.
Be his mother. Trust me, at times that will be hard enough. It will be so hard you won’t believe it. It will be so hard that some days you’ll want to open the door and walk right down the driveway and never come back.
But in the middle of the hardness, please. Do all of the things I didn’t do.
Cup his soft head and feel the way his damp hair curls after his bath.
Hold his squishy cheeks in your hands and gently tilt his beautiful face towards yours. For one moment, don’t worry about eye contact, or the next therapy appointment, or if you should stop using Windex because you read somewhere that cleaning products cause autism.
Simply take in the curve of his face—the way his eyelashes gently sweep and his mouth looks like a butterfly when he smiles.
Sit with him. Take five minutes and sit with him on the floor and watch what he watches. See what he sees.
I didn’t do any of these things. Can you believe it? I didn’t cradle his head in my hands or feel his chubby cheeks or even play with him on the floor. I was too worried about scheduling appointments and researching programs and countless other stupid, meaningless tasks.
Do them for me. And try to remember the two things it took me thirteen years to realize.
He is whole and good and right.
And so are you.
August 21, 2018 @ 12:06 am
Carrie, you always, always move me! Tears today, as I looked back on 21 years with this kid- 21 long, make a mama crazy years. My daughter is the 7th of 8. Less than 2 years in I quit homeschooling the kids. Twenty-one years ago we didn’t even know what autism was, we only knew that this kid was different from all the rest. A she neared 3, we heard about sensory integration, and the diagnoses began, strings of names and letters with a special code that we soon came to know, although we really didn’t understand. ADD, ADHD, PPD-NOS, Dyspraxia, Major Depressive Disorder, Autism Spectrum Disorder- I can’t even remember them all. It doesn’t matter. They were just grasping at straws, trying to figure out what made this kid tick. Then by middle school, epilepsy. Detentions. Medications. Placements. Hospitalizations for suicidal ideations. Finally, at around 18, one astute psychiatrist finally put a name to it: Borderline Personality Disorder. On top of autism spectrum. At least we knew what we were dealing with. This stuff consumes your life. One day when she was in middle school, an older daughter, who was in school in FL, wanted us to come for her pinning, after her first year of nursing school. I wasn’t sure we could do it. Middle school was really rough. And she said to me: “Mom, you have other kids. I want you to be here.” Immediately, I told her we would be there. And that is my point. You can’t let yourself be consumed by this. I know- it’s all day, every day. Oh, and I forgot to mention the Advanced Phase Sleep Disorder, which means that she is up for the day in the wee hours of the morning and so by late afternoon she is just done. Since birth. Carrie, you are so right. It’s hard to look at them as children, as people in their own right, because we are so concerned with the diagnosis, and for me, it’s always been about making her better, recovering from this unknown, life-sucking territory. She was probably 12 years old before I finally realized that she wasn’t going to make a miraculous recovery and be “normal”. And today, reading this- “He is whole and good and right.” I cried, because I’m not there yet, and I know that that is what I need to convey to her. But she won’t believe it, because that’s how BPD is- you never accept what anyone else says. You must always counter it, be contrary. My daughter can be quite articulate, when she’s not perseverating. Or in conversation, because BPD says you must always be negative, always contradict, and you are always right. And autism doesn’t allow you to reliably interpret facial expressions or body language, so you always read something negative into everything people say. Especially your mother, since she is the safe place, because Mom never gives up, never rejects, and almost never loses it. By the grace of God. So how do I look at her as whole and good and right when I know she is unhappy and confused about herself, that she does suffer from depression and sees the world through dark glasses. She is high enough functioning that she sees the differences between herself and her sisters, and she cries, wondering why she has this disorder, why can’t she be normal? I trust God. I understand and get this on a number of different levels. But she has rejected God. Why, I don’t know. But how on earth can I answer her? I say I don’t know, and try to pep talk her with stories of people with disabilities who are overcomers, who somehow made their disability work for them, rather than against them. I tell her no one is “normal”, that we all have strengths and weaknesses and gifts and inabilities. But it doesn’t matter. She only sees herself from her self-centered point of view, and she doesn’t like what she sees. And maybe she is sensing that I don’t like what I see, because I haven’t accepted that she is whole and good and right. I can only pray that God helps me to really see her as whole and good and right, and that He will somehow show her that truth herself. Thank you for sharing your life, Carrie!
August 21, 2018 @ 5:25 am
I hardly believe that you didn’t cradle his head, or squish his chubby cheeks, or play with him on the floor. I just don’t believe it.
August 22, 2018 @ 10:47 pm
I had a brother, Now deceased, a son and a grandson with this in varying degrees… It is so different for each one, and how it impacts the family. I can remember crying so often, but my son has managed to get a job, a girlfriend, and their own place, thanks to God. My grandson is struggling with it now, and school and the normal things in life like showers, and sleeping, but he is a good kid, too! It can be SO hard, but they are ours and deserve all we can give! Good Luck, AND MANY PRAYERS!
August 25, 2018 @ 3:05 pm
I really enjoyed your article. I have a friend whose 28 yr old son is and has been very close to me for most of his life-he is severe,non-verbal but a wonderful person in his own right. He is a great guy. I have 2 grandchildren a 12 yr old boy who is not severe and an 11 yr old girl who is severe but slightly verbal and each of them is really great but different.