Jack, Where Did You Go?
Oh, Jack. I don’t know where to begin. You’re so different lately. You’re angry and irritable, and for the life of me I can’t figure out what’s wrong.
You’ve always been a bit on the cranky side—you’re what someone might call a curmudgeon, which is a big fancy word that describes a person who complains a lot. You’re not exactly a glass half full kind of guy.
You know, like if one of your turtlenecks isn’t clean or there isn’t any ice cream after dinner or we have a party that runs a little late and you miss bedtime, you get aggravated. That kind of thing.
But this, well, this is different. You’re so negative, so unhappy. Nothing anyone says or does can make you smile. You’ve lost all interest in any of the things that used to bring you joy.
When you were about four years old, you had a toy that looked like a kazoo, except instead of blowing into it to make noise, you had to blow as hard as you could to keep a small orange ball afloat on the top. I think an occupational therapist gave it to us to help you improve some kind of motor function. You loved it.
That’s how I feel these days. I feel like I’m blowing big huge gulps of air just to keep you afloat. I am singing and dancing and clapping and joke-telling, but after a while you sink back down again, like a balloon that is leaking air through a tiny, invisible pinhole.
Is it depression? Or some kind of early pre-teen hormones? Or anxiety?
Is it the holidays? Is all the gaiety and chaos and festivities too much for you?
I mean, you used to love Christmas. As in no-you-cannot-start-putting-decorations-up-Jack-it’s-only-October kind of love, but not this year.
This year, you could care less about your favorite ornaments and red and green pillows. You hide in your room, alone. You sit on the couch, alone, and if someone walks into the room you get up and leave. If we’d let you, you would eat alone.
In fact, that’s your favorite thing to say, “Leave me. For ALONE.”
You’ve bitten your fingernails down until there’s nothing left, and you’ve been picking at your face and chewing on your clothes until your sleeves have big wet spots. It’s like you’ve turned your anger inward, and you’re trying to erase yourself one cuticle at a time.
You toss and turn in your bed all night long.
Your obsessions have returned with a vengeance—every day you watch the same Mickey Mouse clip over and over, you wear the same two shirts, you ask me what time it is fifty million four-hundred times a day.
You talk to yourself.
And underneath there is a tenacious, slippery rage, like a hot volcano that might explode and swear and scream any second.
Then the other day: eruption.
The school called around 3:15 because you wouldn’t get on the bus for some reason. Then you tried to run away into the parking lot. I jumped in the car and raced over, and my heart was beating so fast. When I got there, you were pacing in the hall and kicking the chairs. Your face was red and tear-stained.
On the short drive home you told me you hated yourself.
You called yourself stupid.
You said I never listen to anything you say.
You cried and sobbed and threatened to open the door and jump out of the moving car.
I thought my heart would shatter, watching you twist your jacket and rub our fists into your eyes. I wish someone would tell me what to do. I don’t know what to do.
Just a few days ago I was talking with someone who is dear and special and wise, and I was telling him how distant and angry you’ve been. He listened for a moment and then he said, “Let me ask you something.”
Jack, when people say the words let me ask you something, they are serious. They want a thoughtful answer.
So I stood very still and I listened. I figured he was going to ask the same hard, ugly questions I ask myself at 4:00 am when I hear you rocking in your bed; is someone hurting him what is wrong is he depressed is this his anxiety could it be hormones what is wrong.
But he didn’t ask me any of that. Instead, he asked, “What is this like for you?”
Right away, my eyes welled up with salty hot spicy tears.
What is it like to watch you spiral away from me?
What’s it like to orbit you the way the moon orbits the Earth; waiting and circling and hoping and praying, all while regular life swirls around us both like a sandstorm on Mars—ear infections and book fairs and dinner plans and geography bees?
It feels like I am standing on the other side of a window from you and it is closed. I can see you perfectly, but I can’t hear you and you can’t hear me and we are both trapped inside some weird silent bubble.
It makes me feel broken inside, as though I am failing at a fundamental piece of motherhood. It makes me ache.
It makes me feel tired. I am tired of Mickey Mouse. I am tired of reminding you to stop biting your fingernails and chewing on your shirt. I am tired of the searing hot, painful fight.
I am tired of autism’s unending game of cat and mouse, hide and seek, cloak and dagger.
Where did you go, Jack-a-boo? Where are you?
Come back to me. Come back to us. Come back home.
I know you’re in there, my tender, sweet, funny, fragile boy. I miss you. I miss having you with me in the grocery store and I miss your lopsided cakes and your golden pancakes.
I miss your surprise one-armed hugs, like the time I was carrying a basket of laundry down the hallway and we passed each other and all at once, out of nowhere, you wrapped your arm around my waist.
You leaned into me and you almost knocked me over because I wasn’t expecting it and we laughed big deep belly laughs because we were so surprised.
I miss your laugh.
Jack, a lot of people like to take the chance this time of year to talk about how grateful they are for big important shiny things like health and happiness and faith and family.
Lately, these things feel too big for me. They feel like giant fluffy clouds floating high above my head, and every time I try to catch one of them and hold it in my arms, it vanishes into thin air.
I think when it comes to gratitude, sometimes it is better to start small.
I am grateful for the treadmill, and David Sedaris, and sugar cookies with lots of frosting.
I am grateful for your unflappable Daddy, and your laughing, joke-telling, silly dancing brothers.
I am grateful for every mother and aunt and grandfather and teacher and neighbor and sister who read what I write.
I am grateful for the way people can follow the colorful threads of our story, and weave it into their own. Together, we are building autism’s brilliant, mysterious tapestry.
I am grateful to know I am not standing alone on this battlefield.
I am grateful for an 8-year old girl who always knows how to make her Jackie smile.
I am grateful for windows that open.
Jack, right after I finished writing this letter to you, I heard a song on the radio that I haven’t heard in a long time, and I thought it was the most perfect-est song in the world to describe the autism in our lives right now.
So I looked through all of our pictures from the last two months or so and picked the ones who look like you used to be and who you are; ones where you are sad and laughing and mad and distant and happy.
When I watched them all together, I thought one thing: I know you’re in there. And I will wait for you.
December 28, 2015 @ 12:00 pm
I’m sorry! I recently felt this way with my son (on the spectrum, anxiety, adhd) and it’s so hard to figure out. We’re on the other side and he’s doing great now. I hope that your little guy is happy again soon!
December 28, 2015 @ 12:11 pm
Oh Carrie, I am right here with you – feeling lost and alone, feeling like a failure as a Mom, wondering what happened to my dude. I know he will come back, I just wish I could make it happen faster, I wish I didn’t have to wait on autism. Thank you for writing these words and reminding us all that we are not alone in this.
December 28, 2015 @ 12:11 pm
My kiddo endured a 6-month migraine and the entire time, it was like this. My girl who loves to hug EVERYONE didn’t want hugs. My girl who is smiley (most of the time….hormones are hormones) and talking alllll the time wanted to do nothing but sit in silence in a quiet room because sound hurt. No music, Mom. Go away, Mom. I can’t go to homeschool co-op, Mom, it’s too loud and crazy. I can’t imagine what it was like for her, but it was definitely crushing for us to see her just….a shell of herself. We of course had to drag her to various docs, which meant anxiety and anger through the roof and so many doses of ativan. When the headache finally lifted and she came back….wow. And every time a headache comes back, she goes right back to “that place” and it breaks my heart all over again–avoiding that is absolutely worth the insanity of the elimination diet we’re facing. I feel for you and will be praying.
December 28, 2015 @ 12:12 pm
You have a beautiful way of expressing your feelings about Jack!
December 28, 2015 @ 12:52 pm
I recently went through this exact same thing with my oldest daughter (age 22). We know she has ASD, OCD, and anxiety but she was taking meds and had previously been doing so good!! Finally, the doctor recommended changing her OCD/anxiety meds… thinking her body might have become ‘used to’ the meds/dosage. It took about five different tries/meds before we found the right one and this took about 6-7 months, but I am SO happy to say I have my beautiful daughter back!! I am praying for you and your family!! It is so hard to go through and I wouldn’t wish it on anyone!!!
December 28, 2015 @ 1:23 pm
Oh Carrie my heart goes out to you and your dear Jack. Never loose sight of the fact that you are a wonderful caring mum to Jack and all your family. Sending love xx
December 28, 2015 @ 1:30 pm
As moms, we grieve when we cannot reach our child. The emotional toil I have seen in my son is agony. It is present in his countenance, his posture, his eyes. My language does not communicate with him. How do you stop a volcano from erupting when it’s been boiling all day and home is the safe place? It will boil over, so you try to pardon the rejection, mean words, disregard for your love. “Do not hug me, do not talk to me, do not have any expectations of me.” What is hard is you try to understand, but that doesn’t mean it won’t negatively effect you. For them it’s like a bad day that never ends. They wake up each morning and they do not feel better, their brain is still stuck. So what I do is I hold onto our past history; the past history of my son and I and the rollercoaster of life we ride. We have rolled through valleys before; and for us those valleys feel so deep and long. When it’s bad it’s VERY BAD. But I also always remember the coming out of it, the awakening, the return to happy that has happened before. Everytime we go through the valley, it feels like we are starting all over again. But remember, you have been there before, just in a different way and you are the best mom for Jack. I really appreciate how you open your heart and reveal your life. It is encouraging to me.
December 28, 2015 @ 1:42 pm
Thank you for sharing your journey and heart. I have been on the autism journey almost 35 years and have traveled your path. Jack will be back. Anxiety, depression, and hormones may have brewed a “perfect storm.” There are good phases and horrible phases: repeat, repeat, repeat. You are a fantastic mom, and Jack knows that and loves you. Wishing you special blessings in the new year.
December 28, 2015 @ 1:42 pm
I also have an 11 yr old son who is similar to Jack in many ways. Glad I’m home by myself right now as I’m crying big fat ugly tears. We struggle with similar issues and it kills me that I don’t know how to fix it. Thanks for sharing your beautiful words.
December 28, 2015 @ 2:01 pm
Thank you for sharing with us. I’m sorry that Jack is going through this and that you are too. Very difficult. We are all with you and hoping and praying for this to end soon, and for strength for everyone until then.
December 28, 2015 @ 2:23 pm
Wow, I cannot believe it, but when my now 11-year-old daughter (with Asperger’s) was half-way through 4th grade (2 years ago), she went through exactly the same thing! She went from being outgoing, cheerful, loving, and enjoying her pets, school, scouts, reading, Disney, Christmas, and so much more to suddenly being irritated, losing interest in all these things, and angry. She started having lots of meltdowns again at school. Obsessive behaviors came back, too. We also wondered if it was depression, anxiety, and/or hormones. It seemed like it was all of the above. School had become so much more demanding socially for her. She wanted to play tag, while the other girls liked to talk. At first, she could still be friends with the boys (they lost interest in playing a bit later). Also, teachers were less accomodating. She started saying she did not want to go to school, that she wish she did not exist. Also, threatened to jump out of our car once. In her case, her anxiety had gone through the roof and she got depressed. I was told by a child psychiatrist that the obsessive behaviors were an attempt to relieve anxiety. We decided to homeschool her for now (2nd year now), and she has started on an SSRI for depression and anxiety. She has much improved, but many of her interests are still not the same (maybe it’s because she is a tween now). However, our quality of life is soooo much better and she does not have this constant anxiety anymore. Plus, I get to work with her on a curriculum just tailored to her needs (which are constantly evolving). At least, she does not get this constant negative feedback at school anymore. At school, she had become known for her meltdowns which in the end affected how she was treated by peers and the teachers. Her meltdowns were a sign that she could no longer cope. No, more meltdowns now and belly laughs are back, too! And she is doing well academically. Hope everything will get better for Jack soon! Life can be so hard for our kiddos.
December 28, 2015 @ 2:26 pm
My daughter was never easy but when she hit eleven she became violent towards me and others. I attribute it to puberty. She’s 23 now and her poor brain is still stuck in anxious mood. It breaks my heart everyday. I’m sorry. Not much help am I?
December 28, 2015 @ 5:16 pm
Thank you so much for your posts. They resonate with my life so much and I’m so grateful that I’m not walking the path on my own.
December 28, 2015 @ 5:50 pm
Carrie, I hear you. I hope life gets easier for you and Jack and your family.
December 28, 2015 @ 7:01 pm
My daughter is eleven and while she doesn’t have autism,she does have dyslexia which brings anxiety and ocd.It is heartbreaking to see her carry out her rituals and they take up a lot of her time.Yesterday she asked me to close the door for her as it takes so long with her tipping everything four times…as her mother,when she says things like that,it causes a twist in my stomach,I just want her to be carefree.I have noticed that the behaviour definately gets worse during holidays and during times when she feels overwhelmed at school.I suppose the only thing that you can do Carrie is be calm and constant…it’s very difficult.
December 28, 2015 @ 8:52 pm
Just wanted to let you know that I am praying for your sweet Jack and you, too.
December 28, 2015 @ 9:15 pm
Thanks for sharing Carrie, my beautiful son is the same since Christmas. As a Mum your heart aches so much and I am sending love and hugs to all of you out there fighting for our kids x
December 28, 2015 @ 9:34 pm
You could be writing about my Zachary. Heis 29 and is functional non verbal. He went through a really bad time last spring . He is just now beginning to find himself again. It is so hard to see him so upset and not to know what is going on with him. Thank you so much for sharing your life with your guy!
December 29, 2015 @ 1:22 am
I too can relate to not knowing what to do when your son seems withdrawn and depressed. Mine is 23 and is living at home trying to pass his classes at college. He escapes to his room to be on his computer by himself.
My husband and I want to help him, but we’ve tried everything and things aren’t getting better.
Soon he will be back in the college chamber singers choir and life will be alrighr again. When he sings, he finds his voice/happiness.
Thankyou Carrie for your honesty and beautiful writings.
Stay strong.
December 29, 2015 @ 1:40 am
I feel that ache too. We’ve gone through similar changes, ups and downs, since my boy was about 10. He’s almost 17 now, and I still don’t really know what else to do but wait, and remind him that I’m here, His anxiety breaks my heart, I so wish I could help. I hope you find some solutions that will work for Jack.
December 29, 2015 @ 5:05 am
Thank you for writing about an experience that many of us are going through. My 16-year-old, who is “high functioning” has actually not been functioning well at all in the real world for two years. Adding anxiety and OCD to the ASD and ADHD mix has been EXTREMELY trying for our family, particularly because the anxiety often manifests itself as anger. All of our children are different and I hope that most do not travel a difficult path during puberty. The good news is that our son has improved with time and medication, and I do see a light at the end of the tunnel.
December 29, 2015 @ 12:37 pm
Waiting too.
December 29, 2015 @ 3:01 pm
I’m right here with you and I’m so sorry. Keep going, keep listening. Like everything else with our guys with autism, it may take longer but I still believe we will get there. I’m watching my son experience the same thing over the past year, but I think we’re moving in the right direction. We’ve worked on helping him find words like, “I feel nervous!” and “I need help.” Sometimes it’s like throwing mud at the wall until something sticks, “is it CCD?” “is it something at school?” “is it the party next week?” “Is it a noise, a light….??” Keep it up; you are doing a good job!
December 30, 2015 @ 7:03 am
My Jack is still on the same side of the glass. I am going to give him an extra hug. The song that plays as my background score is Time After Time:
If you’re lost and you can look and you will find me
Time after time
If you fall I will catch you I will be waiting
Time after time
December 31, 2015 @ 8:23 am
I pray Jack will be back soon. It hurts for all of us. My almost 31 yo daughter has another syndrome, completely non-verbal and communicates only with sporadic head movements and gestures, but with a pervasive movement disorder and functionally severe developmental delays too, none of it can not be counted on for accuracy. Also has an extremely high tolerance for pain, so when she has something wrong, won’t show it except for becoming more lethargic than she usually is. I try to figure her out every day, as a smile might mean she had to go potty, etc., or not!
God bless us all.
Scott
December 31, 2015 @ 3:48 pm
Your writing is spot on every time! My 13 yr old son on the spectrum touches my heart and emotions like Jack does to yours- thank you for not letting us moms feel alone any more.
January 1, 2016 @ 3:55 am
Thank-You so much for living your life for all to see, I often feel alone with the same issues that face my son until I read your letter. I feel you’re writing this for me/us as well.
Thank you.
February 1, 2016 @ 1:36 pm
Carrie – I have several friends with kids in the spectrum . . .
I have shed a few tears this morning reading your eloquent words. Sharing your and Jack’s journey is so helpful to so many. I can honestly say, in my humble opinion, it is certainly not something that should be kept secret . . . no one did anything wrong, though as a parent I know it would be a natural instinct to think you are at fault. That’s what we do as parents. I will be sharing your blog with many of my friends. I will also keep your family in my prayers. Here’s to more good days, than bad <3
And thanks for breaking the silence!
September 4, 2016 @ 6:12 pm
I’m crying because I identify with your situation.
My son is 10 and he goes through the same behavior, he bites his nails, he has these episodes of rage and uncontrollably crying( like
The one he had today because he deleted a game from his Nintendo Ds) I don’t know what to do, so I wait. I go upstairs to help my 4 year old girl take a shower and I cry, because I feel like a failure, like I can’t and will never be able to help him fit in.