My Name is Carrie, and I Medicate My Son
My 10-year old son has autism. And we give him anti-anxiety medicine every day.
If someone had told me fifteen years ago—back when I was a smart, chic, kind of fit twenty-something newlywed—that my new husband Joe and I would one day give our child a tiny white pill every night, well, I might have laughed.
I mean, people who medicate their children are lazy. Everyone knows that.
They turn to pills and syrupy liquids because they don’t feel like trying anything else first.
We live in a society that is dependent on pharmaceuticals, and parents who give their kids medicine are one more step in the pill-popping downfall of our culture.
It is the easy way out.
Well, I can tell you that it wasn’t easy. But it was a way out.
Here is what I know about anxiety: it is interruption and interference. It is intrusion.
It is an insidious, slithering snake.
It is barking dogs and static on the radio and nighttime waking and middle-of-the-day wetting.
It is fear. It is irrational. And it ruthlessly stalks my son.
Jack’s anxiety first started in the spring of 2011, when he was six. It was like being hit with a ton of bricks–he was here one day and gone the next.
One day, we had a mildly repetitive, somewhat obsessive little boy, and then he woke up the next morning and started talking to himself and mumbling about wanting to eat his friends and screaming that the wind chill factor was going to make him die. He kept saying babies were going to paint him blue.
He was afraid to go to the bathroom. He was afraid to go outside. He was afraid of dogs and stop signs and things that were orange.
He stopped sleeping and he never, ever smiled or laughed.
Joe and I were completely blindsided. We had no idea that anxiety is autism’s sneaky sidekick; that the two travel in pairs like partners in crime. But then again, we thought Jack would outgrow his spectrum disorder diagnosis by kindergarten, so really, what do we know?
We bought a weighted blanket because all the research said weighted blankets are great for reducing anxiety.
It didn’t work.
We re-painted the room he shares with his three brothers a deep, rich navy because we hoped it would calm him, and make him feel as though he was in a soothing cocoon during the night.
It didn’t work.
We tried the Wilbarger brushing technique. We bought a huge box of these white, soft brushes that fit in the palm of your hand, and a dozen times a day we would lightly stroke his limbs and his torso. He loved it.
But it didn’t work. And after a few weeks his younger brother, Henry, started using the brushes to comb his hair.
We did joint compression and massages, breathing techniques and a low-sugar diet.
None of it worked.
Still Jack was terrified of the wind chill and babies painting him blue. Still, he talked to himself and asked to eat his friends and lurked around the corners of the house like a stranger within our own family.
Maybe the worst part was Jack couldn’t even explain what was happening. Over and over we begged him to tell us who he was talking to, why he was so afraid, how to make him feel better, but he could not ask for help.
It was as though he was locked in his own psychological prison, without so much as a file in a cake to break out.
I wept every day.
After two months, the doctor gently suggested it was time to try medication, and so we did.
And it worked. Slowly, Jack returned to us. Slowly, he smiled when he saw his favorite cartoon and stopped having accidents because he was afraid of the water in the toilet. He didn’t shriek and cover his ears when he saw a baby in a stroller.
That was four years ago. And since then, we never once changed the prescription or the dosage, even though Jack is a good forty pounds heavier and at least a foot taller. Then last summer we decided to stop it altogether.
But over the past two months, Joe and I have noticed some changes; some differences in Jack’s demeanor and his movements and his sleeping.
You know when you’re wearing a shirt that doesn’t fit quite right? Maybe the sleeves are too short or the fabric is too scratchy or the collar is stiff. But you’ve already left for school or work or your meeting or the gym and it’s too late to go back and change, so you just stick it out for the day.
And for the entire day, this shirt nags at you. You tug at the sleeves and pull at the collar. You can’t concentrate. You feel irritated and all you can think about is taking it off the second you get home.
That’s exactly how Jack looks. He looks like his shirt doesn’t fit quite right. Only instead of a shirt, it’s his skin. And he can’t go home at the end of the day and take it off; he has to wear it for his whole life.
He talks incessantly about getting stuck in a time machine. He’s afraid he’ll be transported back to colonial times and the time machine will break or he’ll forget how to work it and he’ll have to stay there without us.
He won’t go outside because he’s afraid he will fall down in the snow and not be able to get up. And when we tell him he will be able to get up himself, and if he isn’t he can call us and we will help him, he insists we won’t be able to hear him.
He can’t perform the simplest, every day task—things he used to do easily, like brushing his teeth, pouring his own cereal, taking his homework out of his red backpack—without screeching about how he can’t do it, it’s too hard for him, he is scared.
He fidgets and he twitches and he wrings his hands all day long. If he’s sitting, he bends over at the waist and rubs his palms down the length of his thighs.
He doesn’t smile easily, but every so often he laughs maniacally at a joke no one in the room has told.
He talks to himself.
He is not sleeping.
He is afraid.
His prison is back.
This time, there are no more rooms to paint. Jack can’t stop jumping and flapping long enough for us to use the brushes, and he complains the weighted blanket is too hot.
When you live alongside autism, there are a lot of firsts–momentous milestones we never thought we’d reach. And every once in a while, I like take them out and hold them up to the light like rare, precious jewels.
His first word.
His first sentence.
His first real two-armed hug, and the first time he ate a piece of salmon.
The first time he lost his smile.
The first day he got it back.
And then, about a week ago, the first time he asked me for help.
“Please be next to me. In this bed. I can’t stop it for thinking about the time machines.”
If I had my own time machine, I would travel back to my young newlywed self. I would loop my arm through hers and bend my head close. And I would ask her not to judge her future, because she has yet to walk in her own shoes.
She has yet to meet a tender, precious, funny boy named Jack.
She has yet to imagine the rich, dusty purple of a Saturday or Sunday morning’s brilliant yellow.
She has not yet held the fate of a child’s joy in the palm of her hand like the most fragile, breathtaking butterfly.
She has yet to hear the softest, saddest whisper in the silence of a navy blue room.
“My brain. My brain. It is moving fast. It feels not right.”
She has yet to try and melt his snow.
We have refilled the prescription. And two nights ago, I shook the small amber vial and gave Jack his first tiny white pill. I watched him drink it down with a mouthful of water. And then I prayed.
I prayed it would help to bring him home, just like it did the first time.
April 13, 2015 @ 12:29 pm
Oh friend, that sneaky sidekick to Autism doesn’t have a chance. You and Joe are wise and wide-eyed. And you teach us all to remember that we cannot judge what we do not yet know.
Praying with you- and resting in the hope that Your Jack will be back sooner than soon.
April 13, 2015 @ 12:39 pm
Praying too. Anxiety is ugly, Benjamin started up around the age of 7 and we struggle. Thank you for sharing and being honest and raw – it helps me on my own journey.
April 13, 2015 @ 12:53 pm
Praying for your family and for Jack. We haven’t tried meds yet bc our son won’t put anything in his mouth that he hasn’t been eating since he was a toddler but we’ve been fighting a recent upswing in anxiety again too. I hope this helps and brings you and Jack some peace.
April 13, 2015 @ 12:58 pm
Praying that the medicine helps again. My son takes risperdone. In the fall the psychiatrist took him off that and tried several other medications that made him very angry and aggressive. So I went back to the pediatrician and we are back on risperdone. I feel like I have my son back. I hope you get yours back quickly too.
April 13, 2015 @ 1:12 pm
Your child asked you to help him and you are….that is all there is to it.The meds will work and he will be himself again.xxx
April 13, 2015 @ 1:13 pm
I am feeling every word….Autism, ADHD, ADD, Anxiety…all are a struggle, always wondering whether we are doing the very best, always at the grace of others (or our own) comments, opinions, suggestions. If nothing more I will share with you what was told me me by my beloved Grandmother who passed last December at the age of 105 years (she had 5 children, 12 grandchildren, 26 great grandchildren and always welcomed any child in need into her home). “Every child is perfect in their own way, they all have their strengths and weaknesses, no child should be expected to be like another…all are just as perfect in the Lord’s eyes”! If you truly know your child you should be at peace with the decisions you make and no one else’s judgement should hold you back or stop you from doing what in your mind and heart you know is best…..you wouldn’t withhold insulin from a diabetic and expect him/her to live at their very best and you shouldn’t let others decide what your child needs to live to be his/her best”.
I re-read this almost every morning and somehow it gives me encouragement and strength. Thanks for all you share!
April 13, 2015 @ 1:26 pm
Oh Carrie, this just breaks my heart. It is such an intimate look into the realities of living with autism. I am a mother; I can feel your pain. Jack needs this medication to live his life. You and Joe make great decisions! Thank you for sharing. Joyce
April 13, 2015 @ 1:28 pm
Carrie you are a voice to all of us who struggle with this. It’s hard for the world to understand but I am so comforted by everything you wrote. I live this too. Blessings to you and your family.
April 13, 2015 @ 1:45 pm
My heart hurts so much for you and for Jack. I suffer from anxiety and have taken medication for a long time. I would not wish it on ANYONE let alone a precious child like Jack. But my son has it too. Along with a host of other illnesses and every time we needed to resort to medication, I felt that little thorn. I mean, I did EVERYTHING right during pregnancy, I had a homebirth. I breastfed him for 2 years. And STILL. We are fighting a new battle and the standard treatment is an antidepressant. And I want to run the other way and try everything…..but I probably won’t. Because my baby boy (who is 13) has been so ill he’s missed 6 weeks of school this year. Sorry to tack onto your beautiful heart rendering post. I pray Jack comes back and anxiety goes AWAY. Hang in there mama.
April 13, 2015 @ 1:48 pm
Thank you so much for opening a window into your world, and giving us a better understanding!
April 13, 2015 @ 2:44 pm
I know exactly how you feel. I have a son who just turned 16 on the Autism Spectrum and we did put him on medicine when he went to Kindergarten. He would just run and you just could not stop him, that was the main reason we medicated our son. Yes, we have had to make medication adjustments over the years. I thought the same thing you did that every year it would get better and would no longer need it. But, he is still on it. He definitely has improved, but still needs the medication. Thanks for your story!
April 13, 2015 @ 4:34 pm
“My brain. My brain. It is moving fast. It feels not right.” Jack is right on with his description of what persistent anxiety feels like to those of us who live with this insidious monster which does not allow us to live our lives. I am a retired teacher. I spent 20 years teaching children with various physical, emotional and mental challenges that required them to receive support services. I understand how chronic anxiety steals joy. Personally, I have taken anti anxiety meds for many years. Everyone in my family has some degree of persistent anxiety. Everyone of us has reclaimed our ability to live our life with joy and anticipation of the future because of the meds. I believe each one of us will take these wonderful medications for the rest of our lives. I am so happy they are available to us. As one of my daughters said, ” taking the medication means I can take time to catch my breath and think. I can truly relax”. Persistent anxiety means I can never relax or catch my breath. My mind is always running-way too fast. No guilt needed. No regrets. Do what is best for Jack. Blessings to you and yours.
April 13, 2015 @ 6:18 pm
Like Angie my son is 22 and is on meds since Kindergarten. He may need them forever. I still keep looking and adjusting as we go. I need him to face the world as schooling is coming to an end. Another scary story.
Thanks for putting your words for all to share. It is very brave of all of us to share along with you.
April 13, 2015 @ 3:36 pm
I just needed to say that very recently I saw you blog and began looking at your past post! I am so moved and touched and can’t really find the right words… It’s not very often, if ever that I find another mother who I can identify with so much. My son is 15 and he is autistic. Some what high functioning, very verbal, a lot of perseverating, a lot of fears, very smart, but not a lot of common sense. Most people fall in love with him instantly. He is funny and charming and adorable! But he doesn’t fit into a specific category… He has many different traits and kind of falls through the cracks a bit! I did early intervention and he has had to be on meds since he was 4! He has had 4 hospital stays and I finally had to make the most difficult decision of my life and put him in a residential school. He comes home on weekends and the hope is that the intense structure will help him so he can eventually come home and stay out of group homes in the future. I’ve been told it was a unselfish decision but it sure doesn’t feel that way. Anyway… I could go on forever… I love my son more than life itself but this has been the hardest thing I’ve ever dealt with. I find it very comforting to read your words and know sombody else out there feels like I do… The good and the bad and the crazy!
Thank you!
Thomas’s Mom
Kim ❤️
April 13, 2015 @ 9:39 pm
I agree with the other adults on the anxiety. I always had some kind of anxiety my whole life. Then I broke my foot when my daughter was in fifth grade. I had my first anxiety attack in the er. This was in the spring. By the first day of school in the fall I was a wreck. I felt like my insides lived independtly from the exterior of my body. I finally consented to meds and felt better. Unfortunately, my primary caregiver was not willing to work and adjust my meds. I can remember being on the way to the beach, me driving with my family in the vehicle, 70 miles per hour on a six lane highway and telling my husband I was having an attack. The family started digging for meds. My insides felt like electrified jello, but my outward appearance looked normal. Eventually, I got a caregiver that LISTENS to my needs and helps me be comfortable. I know my triggers and I still always have that little voice in my head, but most of the time with some deep breaths I can calm the voice. If not, I feel hot all over instantly. Like somebody has lit my body fluids with fire and I can’t control the heat. The meds are the fire hose calming my insides.
I hope by explaining in such detail how my anxiety makes me feel you can have an understanding of what jack may be feeling too. I wouldn’t trade my meds for anything. I would have no life without them. I also talk freely about my anxiety because most people won’t. If I can help one person, then my story is worth it! And the things that jack thinks, they aren’t special to autism. Anxiety brain can take a simple object and can direct it to a horrible scenario. Sleep is not easy for me either. My mind wanders and can come up with all kinds of bizarre things to keep my brain running on high speed. So autism may not get all the credit for anxiety, being human is a big factor!
April 13, 2015 @ 11:20 pm
You are added to my prayer list. We all know you are doing all that you can for your son.
April 14, 2015 @ 12:07 am
After 7 years of counseling, group therapy, PT, speech therapy, and everything we could throw at our now 10 year olds Autism, meds were the best thing we ever did for him and us. The key is to go straight to a psychiatrist, and skip your pediatric doctor and psychologist entirely, as everyone else in his life was just guessing at a proper prescription. Our pediatric doctor first tried a stimulant, which failed, and we almost gave up, until the psychiatrist quickly realized that anxiety was at the root of our son’s issues, so an anti anxiety drug is what she prescribed. In 2 sessions, our psychiatrist got his prescription level nailed, and now he can do his homework virtually unassisted, the meltdowns have melted away, he speaks in a calm voice, and has found new strength that courage that otherwise would not exist. After only two weeks, the changes became real and all of the fear and anxiety began to bleed away from our son’s being—every week he now amazes us with is progress. After 6 months on meds, we regret not pursuing it sooner. Check your preconceptions and judgments at the door, and if you want to see real change, get in to see the best psychiatrist you can ASAP and open your arms to modern medicine!
April 14, 2015 @ 1:04 am
We use meds in our family for our 9 year old Nash. Meds brought Nash to us, then they made him violent, then we got meds for that too. Today, we have changed the meds…and now Nash giggles…all the time. We are a work in progress with the help of meds. I don’t judge those that use meds or those that don’t…but I know, in my family, we use meds. I love reading your blog….it makes me feel normal because our family is not the only one. Thank you
April 14, 2015 @ 1:27 am
Normal is overrated! I don’t ever want that label lol
April 14, 2015 @ 3:42 am
Reblogged this on oshriradhekrishnabole.
April 14, 2015 @ 5:50 am
Reblogged this on Eyes Wide Open and commented:
A vulnerable and accurate description of watching one’s child suffer from an anxiety disorder.
April 14, 2015 @ 9:06 am
Thank you so much for this!! My daughter does not have autism, but she has anxiety disorder and sensory processing disorder. She has been on medication for almost two years. I tried recently to ween her off of it and it was a disaster. I have sine increased it back up a couple of steps because it is what she needs to function. She is six. Again, thank you so very much!!
~Johanna
April 14, 2015 @ 9:28 am
“If I had my own time machine, I would travel back to my young newlywed self. I would loop my arm through hers and bend my head close. And I would ask her not to judge her future, because she has yet to walk in her own shoes.”
Best quote ever. You have said everything that I can never get out eloquently. My 7 year old has ASD and battle with anxiety and OCD. His ASD gives him some remarkable traits, but if I could take away the fear and frustration from anxiety, I would. For now, medication helps. Thank you
April 15, 2015 @ 9:31 am
no hablo ingles, tengo un hijo con autismo,, le doy intuniv de 1 y 3 mg todos los dias,, esto llevo a mejorale su calidad de vida y nuestra calidad de vida.. estuvimos muy renuentes a darsela pero debido a su alto indice de hipeactividad y desconcentracion experimentamos con la medicina y vimos de inmediato los resultados.. pensamos en su vida diaria en su relaciones en su parendizage y gracias a Dios el neurologo nos dia la opoartunidad de experimentarla y el resultado es maravilloso,, creo firmemente en que es mejor darle calidad de vida para que puedan salir adelante por sus propios medios..
April 16, 2015 @ 11:26 am
So sorry Jack’s anxiety is back. It always gives me hope to hear that medicine really helped someone and I hope it works again for him. We just recently weaned our daughter off of medicine for generalized anxiety disorder after two years because we’ve never felt sure it was helping. There is so much guilt and confusion. She is definitely going through a rough patch now but why. She always had extreme ups and dowsn, so how long do we wait before we decide it is the lack of meds versus one of her low points. We too have watched her be unable to sleep, pack her backpack, do homework, fix a simple snack, take a bath, sit with her feet on the floor, etc. all because the anxiety is too great. She has obsessive thoughts, delusional fears, tics, and tense muscles that make living everday life a nightmare and yet nothing has been the magic bullet, not the 3 meds we’ve tried, not the two years of cognitive behavioral therapy, not the physical/occupational therapy to work on specific activities, not the hippotherapy (although it has made her the happiest). I still hope there is something out there that will make an amazing difference – maybe a drug we’ve never been offered, maybe she’ll mature and be better able to use the coping strategies she’s been taught.
I feel so desparate when I think of her plight but every time I hear that someone else improved through medication or any other means, it gives me renewed hope. Fervently hoping Jack will be loosed from the anxiety bully again! And thank you for sharing this with the world – too few people understand what families are going through when a child has severe anxiety!
April 16, 2015 @ 10:22 pm
My 22 year old daughter suffers from terrible anxiety too. She’s on two antipsychotics but they don’t do much. We’ve tried marijuana which helps a little. What do you use for your son? Thanks.
April 22, 2015 @ 1:50 pm
Thank you so much for this. Going to share it. I am the mother of a son with ADHD, sensory stuff, and anxiety disorder. This is so helpful to have you break against the stigma out there. Thank you! Bonnie Lyn Smith, author of “Not Just on Sundays”.
May 6, 2015 @ 10:02 pm
New reader here. My son is 6 (was micropreemie) has autism/anxiety/adhd/had a brain injury. Great post — it’s so hard. My son started zoloft at age 4.5. It helped him immensely, as you said. I never realized how much he was held back by anxiety until he had his medication. We are considering trying him off it. I’m really nervous. Thanks for sharing your experience. I also never dreamed that he would be taking this so young, it’s hard to know what to do sometimes.
May 6, 2015 @ 10:03 pm
New reader here. My son is 6 (was micropreemie) has autism/anxiety/adhd/had a brain injury. Great post — it’s so hard. My son started zoloft at age 4.5. It helped him immensely, as you said. I never realized how much he was held back by anxiety until he had his medication. We are considering trying him off it. I’m really nervous. Thanks for sharing your experience. I also never dreamed that he would be taking this so young, it’s hard to know what to do sometimes.
May 12, 2015 @ 8:43 pm
Wow. I just found your blog. I only read two posts so far and both sound like I could have written them about my son. Very similar. Looking forward to reading more of your entries. Thanks for sharing.
June 9, 2015 @ 10:50 am
We have mediated our son, who has Aspergers, since he was 5. His developmental pediatrician said his anxiety is 9 on a 1-10 scale. At age 10 we had to add more needs when he became suicidal. We have tried and do so many other things as well. They all have their place, including the meds. We’ve found the perfect combo of meds, and he’s doing so well. Thank you for being so real in your writing. It helps to know others struggle I the same ways I do. Being a mom to my son with autism stretched me like nothing else! But I wouldn’t change him for anything!
March 25, 2017 @ 10:50 am
How is he now?