I Am the Mother
I remember the very first time I felt like a mother.
It wasn’t when I held a slim white stick with two pink lines, or when I saw a teensy little foot flicker on the sonogram screen.
It wasn’t when I felt my tummy flutter with kicks, or when I sat, plump and round and flushed, opening gifts at my baby shower.
It was in the hospital, about two hours after I delivered my first son, Joey. I was asleep, and through my daze I heard a squeaking sound, like a wheel coming off of a cart.
It was a cart. And inside the cart, or rather, on top of it, was a newborn baby all swaddled in a striped blanket. He looked vaguely familiar, like someone I’d seen before but I couldn’t quite place.
“Are you his mother?” the nurse asked sweetly. “Because this little darling needs to eat.”
I squinted at her, and then I looked at the clock on the wall. It was 3:00 am in the morning. No one had ever, in my whole life, woken me out of a sound sleep at three in the morning. Six, maybe. Seven o’clock? Sure. But not three.
From that point on, I was the mother.
First the mother of one boy, then two, then three. Eventually, the mother to a daughter, and then, when the urologist was too busy to keep his appointment with my husband, another son.
Finally, a mother of autism.
I checked the box next to mother and I wrote mother on a zillion forms and when I had to make very hard phone calls asking for evaluations and test results and reports, I stood next to the kitchen counter as tall as I could even though no one could see me, and I said, “I am his mother.”
If I had to describe what it’s like to be a mother, I would say it is strange and amazing and exciting and boring and ordinary. It’s like a lifelong song with a lot of different pieces; sweet lullabies and soothing symphonies and chaotic jazz. There are dizzying crescendos, and long solos, and sometimes, we are all out of key.
These are the hardest days of my life.
Not just because of autism—I mean, yes, obviously because of autism—but because of a bunch of other reasons too.
I am making a million small decisions that hopefully add up to decent human beings; decisions about travel soccer and organic peanut butter and dance class and screen time. I am in charge of childhood, and that scares the heck out of me.
On one hand, I don’t always want to be the mother. I know I’m not supposed to say this because I should be hashtag blessed and so happy and grateful and whatever, but it’s true.
I don’t want to be the one who figures out what’s for dinner or the one to schlep them all over town or the one to handle the hard topics like bullying and sex education and why you should cut your toenails at least once a month. Maybe more.
Some days I feel like I’m drowning in a pool without water, like I can’t breathe for the permanency of it all. I will be a mother forever, and this simultaneously delights and depresses me.
Yet on the other hand, my heart explodes with all the colors of the rainbow when I hear them laugh out loud. I guess this is why God gave us two hands. And here I thought it was so I could slice an apple and sign a permission slip for the third grade field trip at the same time.
My second oldest son, Jack, has been trapped inside of autism’s blizzard for an entire season now. It is a cycle of anxiety and anger and aggression that begins anew each day.
Sometimes, the school calls because he is too frantic and hysterical and agitated to take the bus home. When this happens, I go pick him up.
And every time I race down the long hallway and make a right into Room 19, something small and raw and real dies inside of me. Because, you see, I am the mother. And he, my son.
If I had to describe what it’s like to be a mother to a child of autism, I would say it is strange and amazing and exciting and ordinary.
I would say it is never boring.
I would say it’s like watching someone who is perpetually out of rhythm try his hardest to dance with the world.
All this time, I thought if I could just reach inside the storm and grasp his fingers in between my own, I could pull him to safety. I see now that I was wrong.
Lately though, he’s turned the corner just a little, and taken tiny steps forward out of his tempest and into the warm spring air. If I wasn’t watching him so hard, so carefully and vigilantly, I might have missed it altogether.
It wasn’t because of my tireless devotion, or my excellent parenting skills.
It wasn’t my panic, or my desperation, or all of my Google searches.
It wasn’t my magical maternal powers.
It wasn’t my love.
It was medicine.
I had to decide whether or not my son should take more medication to alleviate some of his most challenging autism symptoms, because I am the mother. A bad good confused scared lonely mother.
Jack doesn’t have the wherewithal to weigh the pros and cons of the long-term effects of an SSRI against the short—and possibly long—term effects of deregulation and tantrums at school and bone-crushing anxiety.
I had to make a decision for him that he cannot make himself. And it’s kind of a big decision, one with lots of controversy and judgment and research, one with a somewhat unknown ending.
We have decided. And so, every night, right before he scoots under the covers and surround himself with his six pillows and cradles his favorite bunny in his left hand, I call him over to me. I say softly, “Jack, it’s time for your medicine.”
Now, on top of the small white anti-anxiety pill, I give him an even smaller green pill to swallow. He does it without question. Perhaps this is what hurts the most.
I am the mother.
Actually, he did have one question. While we waited at the drive-through for the pharmacist to send the small orange vial through the stainless steel window, he asked me, “Is this to take. The autism out of me.”
I leaned over the car’s center console and I took one of his hands in both of mine.
“No, buddy. No. You will have autism forever.” For a second, I couldn’t breathe, for the permanency of it all, the unfairness of it all, and the delightfulness of it all.
It’s been a week now since he first started the medication. His body is just the slightest bit calmer, his movements a little less spontaneous and jagged.
During dinner one night, he turned his gaze to his sister Rose and looked her right in the eye and asked, “How was it. How was for your day. At school.”
I caught Joe’s eye, and we smiled quietly at one another.
And Saturday morning, he slept until after 8:00. Not 5:45, or 6:02, but 8:19 am. In his almost twelve years, this has never once happened—not a single time.
He stumbled downstairs to the kitchen where Joe and I sat, drinking coffee.
“I sleeped. Until so late.”
“I know, Jack! How do you feel?”
“Good. It is for good.”
It is for good. Because of this little green pill, my son is starting to take back some ground, despite autism’s willful, dogged determination. The cycle is not broken exactly, but for the time being, there is blissful interruption.
We aren’t done yet. We still have a long road ahead of us, trying to untangle the sticky spectrum knot inside of my Jack-a-boo.
The next step is a neuropsychological exam, and I have already begun the process—checking boxes and filling out forms and attending intake exams, trying to describe the everlasting music that plays deep within my son.
Last week was my first appointment, on the third floor of an office building.
I was sitting on a low brown couch, and when I looked up, a young woman was standing in the doorway. She was holding a folder in both hands.
“Are you here about Jack?”
“Yes,” I said, rising from my seat. “Yes, I am his mother.
May 2, 2016 @ 11:04 am
I think you’re so very brave for sharing your autism story through writing. I love, love reading all of your posts and hearing your perspective on being the mother. So simple yet extraordinary, really! Thanks for sharing.
May 2, 2016 @ 11:16 am
PTL! You, the mother, are great!
May 2, 2016 @ 11:39 am
Throughout my very long teaching career I have watched hundreds of well-meaning, dedicated parents go through the heart-wrenching decision of whether or not to try “drugs” – usually for ADHD. Nobody makes that decision easily and without a lot of soul searching. But…sometimes there are “end of the rope” situations that leave us no other option. I believe that might be the case for you and Joe. I know you aren’t looking for an “atta-girl” affirmation, but I’m going to give it anyway. Sometimes we simply have to take the road less traveled (and eat a little crow) in order to save our child.
I Am the Mother — Carrie Cariello | oshriradhekrishnabole
May 2, 2016 @ 11:42 am
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May 2, 2016 @ 11:43 am
Really awesome blog!!!
May 2, 2016 @ 11:43 am
Ok, I consider myself a tough cookie, but this one opened the flood gates. Nobody should judge you negatively for giving your child medications. We all need the proper amount of serotonin. It helps us regulate emotions, helps us sleep (melatonin is a metabolite of serotonin), and it is a neurotrophic factor that allows the brain to develop proper synapses (even at 12; plasticity is a marvelous thing). If certain symptoms indicate a lack of optimal serotonin, we have to at least try to optimize serotonin with medication and see how well it works for a particular child since we cannot check a level (yet). If a child has diabetes and needs insulin, we do not deny the child insulin. Anybody who would judge you negatively for allowing your child to get the medicine he needs, simply would seem ignorant and cruel. Those parents would be the ones who take credit for their child’s neurotypical neurology and who think that is their parenting skills that allow the child to do well. Such folks need to be ignored. No need to waste positive energy and time on them. Starting a medication is not something that can never be stopped or tweaked anyway. One day at time! -Yes, you are his mother and you deserve to “stand tall” because you are allowing your son a chance to feel good about every day life and above all, a chance to feel good about himself and to value himself. That, afterall, is such a big and wonderful part of being a mother!
May 2, 2016 @ 11:49 am
Oh my goodness. TEARS. What a beautiful piece, captures every bit of the responsibility, joy and fear that we manage everyday. The decision to medicate is a HUGE one that we just went through ourselves. I swore I’d never do it, but one little blue pill has taken the edge off our sweet boy. We just have no clue the level of anxiety they endure! Blessings to you.
May 2, 2016 @ 12:36 pm
Medication has been our only calm in the storm. Anxiety is central to how our sons autism affects his ability to function. Calm that anxiety with the right prescription and level, and his life is changed and our families as well. Reader, make an appointment with a child psychiatrist who is an expert in this area as soon as you can. Do not waste your time talking to your pediatrician.
May 2, 2016 @ 1:27 pm
Carrie,
Thank you for sharing your journey with us. This makes me feel so much better about decisions we have made for two of our boys who are on the spectrum. I love your writing style and I am a huge fan of Jack:-).
May 2, 2016 @ 1:41 pm
As someone who has suffered from anxiety and panic attacks,let me reassure you that as a rational adult I was unable to cope with it….so I cannot imagine how scary it must be for a child.In my humble opinion,you have one hundred per cent totally and utterly made the correct decision.I have sensed your growing pain and worry over the last while and am so glad that you are beginning to see signs of the old Jack coming back.Your decision has made your sons life easier….that is all we can do.x
May 2, 2016 @ 10:53 pm
I have seen medication work wonders for some children. You will know if it is having a positive or negative effect. It’s worth giving it a try, for when it is the right stuff, it can make a big difference. I hope it works well for Jack and the family. Happy Mothers Day!
May 3, 2016 @ 12:07 am
I’m so glad to see the new med is helping a tiny little bit. I pray you will start to see even more changes and glimpses into the “old” Jack.
Your blogs are always so insightful, truthful, and “right on.”
Praying for your whole family as you travel through these rough times.
God Bless.
May 3, 2016 @ 12:50 am
Carrie I am so glad to hear that you have found something that is working for Jack. Another beautifully written piece. You are an amazing mother!
May 3, 2016 @ 1:08 pm
Thank you for taking the time to share your experiences. I look forward to reading your blog every Monday. I admire your courage your ability to be very honest and real.
Happy Mother’s Day!
May 5, 2016 @ 7:30 pm
You are a fantastic mother, as well as an amazing author. Your post brought back long forgotten memories of how I felt when faced with this decision. But medication and therapy have saved my son from a life filled with gripping anxiety and self-doubt. He is a grown man now but somewhere deep inside he is my little boy struggling to conform to society’s expectations. We all do the best we can – these guys don’t come with an instruction manual! I hope you have a very happy Mother’s Day – you certainly deserve to! Hang in there and keep writing.
May 7, 2016 @ 3:29 pm
Reading your post this past week brings me back to when my grandson was four. He is now seventeen and his mother is still working on his anxiety issues, At four when the rest of the family did not see the problem, My daughters insides told her something was wrong. A true Mother’s instinct. I understand they can now test how the different medicines being given effect individual children. By moving slowly the study shows the plus and minus of certain meds and how they affect the serotonin levels in the brain. It is a start and hopefully will help with treating our children. In the meantime we have to try giving them some hope and if medicine is the answer so be it. You are a wonderful mother and a constant inspiration for all mothers with children on the spectrum. Happy Mothers Day to each and everyone of you. They are all God’s perfect children and I am blessed to be part of my grandsons life and will continue to search, pray and have hope there will come an answer. Thank-you again for all your input.