All the Things I Do Not Know
Dear Jack,
When you were about three years old, a woman suggested to me gently that I shouldn’t talk about your autism.
“Maybe it should be, you know,” she leaned in so close I could smell the spearmint gum she was chewing. “A secret.”
I almost laughed out loud. A secret! Which part of you and your autism was I supposed to keep a secret? The part where you didn’t even look up if someone talked to you?
Or how you insisted on carrying a flashlight around with you wherever we went?
Maybe the year or so when you did something called echolalia, and you mimicked every single thing I said at least eight times.
Jack put your coat on Jack put your coat on coat on coat on on on on.
How would I go about hiding it? I supposed I could have told people I had a teeny-tiny parrot in my pocket, but that seemed kind of weird.
Or that you spoke a foreign language and you didn’t understand the woman in the post office who said, “Hello Jack! How are you today?”
So I told them the truth. I said I didn’t know.
I don’t know why he repeats everything I say forty-nine thousand times.
I don’t know why he goes crazy if we tell him to put the flashlight away.
I don’t know why he won’t answer you.
Then the doctor told us your big huge official autism diagnosis and it was stamped all over a million forms, and so once again I said the truth.
He has autism. That’s why he says things over and over.
He feels comfortable when he holds certain objects.
Just keep talking, he can hear you even if he doesn’t say anything.
I can’t think of any other diagnosis that is shrouded in secrecy the way autism is. They all live and breathe out in the open like sunbathers on a warm, sandy beach.
Yet people want autism to wear some sort of fancy cover-up and stay out of the sun. For whatever reason, they are scared of it, in a way they aren’t scared of wheelchairs or hearing aids or extra chromosomes.
It’s is clouded in a murky swirl of stigma and shame and fear, and at the center of it all, pulsing like a raging heart, is blame.
The thing is, even if I tried to keep your autism a secret, people would label you anyway. People like the librarian and the kids at school and the cashier at TCBY who saw you dump the entire container of rainbow sprinkles into your huge cup of frozen yogurt.
Rude.
Disrespectful.
Impulsive.
Dumb.
Greedy.
Honestly? I’ll take autism spectrum disorder over that bunch of words any day.
In fact, when I mouth autism over your head, I can almost see the words changing—rearranging, like letters in a big hot bowl of alphabet soup.
Scared.
Overwhelmed.
Anxious.
Hungry.
Brave.
The first few times I told people about your autism wasn’t easy, Jack. I felt vulnerable, like I had forgotten to put any clothes on and I was walking around naked, or as though I had been trying to make a beautiful, shiny bowl out of clay, but the best I could do was a misshapen mug with a cracked handle.
Although we are having one of the warmest winters on record here in New Hampshire, it is still snowing inside our house. For almost two months now, I have been trying to find you in the middle of autism’s cold, harsh blizzard.
You don’t sleep. You are nasty and mean and angry and remote and far, far away. Your body is in a constant state of deregulation and you bit your fingernails down to the quick.
You are scaring me.
Last Thursday afternoon, the school called. I could hear you screaming in the background, but I could barely concentrate because your crying was all mixed up with hot alphabet soup sentences like he’s very upset and throwing things and not safe to ride the bus.
For the second time in a month, I raced out the door to pick you up.
When I got there, you were huddled in the corner of the empty classroom, sobbing big huge empty gulps of air. Your cheeks were as red as if you’d spent the day outside.
The alphabet soup letters shifted and swirled and spun into place.
Broken.
I walked slowly toward you, as if you were a rare delicate bird who would fly off into the clouds if I moved too fast. When I reached you, you stood up. I folded you in my mother-wings, careful, so careful, not to wrap too tight.
You laid your head on my shoulder and we swayed together lightly like leaves in the soft breeze. You wept, and I wept, too. I wept because of you and for you and with you.
“Take me. Home.”
I’ve had a lot of low moments when it comes to autism, but this one, Jack-a-boo, was the lowest.
Walking into school and seeing people bustling around with walkie-talkies in their hands and saying things like we had to clear the room to keep everyone safe and thinking the bright white hot thought in my brain that they were talking about you—they had to keep everyone safe from you; my gentle giant, my cake-baker, my turtleneck-wearer, my son.
All the way home you screamed you were never, ever going back. As soon as we pulled into the garage you jumped out of the car, but I stayed behind and pretended to read something on my phone.
Really, I was just crying stupid tears and I didn’t want you to see because I hate to have anyone see me cry.
When I walked inside I tried to talk to you, balancing along the familiar tightrope of cause and effect, heartbreak and discipline. You sat at the counter and chewed on your fingernails. You wouldn’t look at me.
“Jack. Honey—please, stop chewing on your nails, they’re going to bleed again—I want to help you. But we can’t throw things at people.”
“Jack, look at me. Tell me what’s wrong, why you got so upset.”
“Jack, I’m sorry you’re sad, but you will have to write a letter to your teacher and say you are sorry.”
Finally, you looked up and the quickly away from me.
“I hate. It all.”
“Jack, tell me. Tell me what happened.”
“I’m going to. For vandalize the school.”
“Why? What made you so mad?”
“I will. Throw all the books. For down the hall.”
I tried a different tactic; trading actions for feelings.
“Don’t tell me what you’re going to do. Tell me how you feel.”
“I’m going to put it on fire.”
“Don’t tell me what you’re going to do, Jack. Tell me how you feel.”
After five minutes we were screaming at each other, big ugly loud voices that carried through the house and bounced off the walls.
“I will crush. Every COMPUTER.”
“How do you feel right now?”
“I will be rude to all of them.”
“DON’T TELL ME THAT. TELL ME HOW YOU FEEL.”
And your face just crumpled inside of itself. I can’t explain it any other way.
“I don’t know I don’t know how to feel I don’t know what I feel.”
I thought about all the times I said I did not know; when you were a little chubby three-year old and you repeated yourself constantly and when you needed to sleep with that stupid flashlight and when you wouldn’t even raise your head if I called your name.
Jack! Where are you Jack?
I thought about how, strung together, these three words are the strongest and the most powerful anyone has ever said.
I don’t know.
They are purpose and surrender.
The are forgiveness and mercy.
They are the beginning.
See Jack, the label autism spectrum disorder does not give us answers. It is merely the starting point, the place where we gather up the pieces of the broken mug, and glue the handle back together again.
In the meantime I want to tell you all the alphabet-soup words I did not say as we stood, swaying and weeping together in your classroom.
Hold on.
Hold on to me. Hold on to yourself, for just a little while longer.
Spring is coming.
February 1, 2016 @ 10:45 am
My heart aches for you Carrie. As a retired teacher that worked with autistic children I am familiar with the “long winter”. At times it seems like the retreat is so deep that the sweet child you know is lost forever. All I can say is HAVE HOPE and continue to do all the wonderful things that you are doing for Jack. His spring will come.
February 1, 2016 @ 10:46 am
Another post straight from the heart. I look forward to receiving these every Monday, thanks they are very helpful
February 1, 2016 @ 10:51 am
This brought me to tears. I’m still crying as I type this. I remember going through this years ago. Sending hugs and prayers to you all.
February 1, 2016 @ 11:00 am
Carrie:
I feel your pain & sometimes I think it’s just the time of year. My 17 y.o. son Justin has autism also & I so related to today’s post. He doesn’t throw things but he likes to put his hand over people’s mouth if he doesn’t like what they’re saying, which has been more frequent during the gray, cloudy, cold days & we’ve seen a few more meltdowns than usual. I too, have sat behind in the car crying. Being unable to know Why? is the hardest thing for me. And sometimes for a fleeting minute following a huge meltdown & through the tears I might get a word or two to help me see the problem and those are the moments no one else will ever understand than a mother of a child with autism.
I love your weekly posts because you make me feel not as lonely.
Wishing you a better week & Spring is only a month and a half away. 🙂
Beth
February 1, 2016 @ 11:09 am
I’m so sorry. This is tough! Been there…done that. What a world!
February 1, 2016 @ 11:32 am
Sending you my love & prayers Carrie… I have high hopes for your Jack-a-boo. Spring is coming! -from a fellow autism mom
February 1, 2016 @ 12:19 pm
Thanks again for sharing. It’s so difficult. As an autism parent I read your posts because I know you understand. I hope the fact that WE understand is helpful to you, too.
February 1, 2016 @ 12:34 pm
Please please know you are all loved so much. We have never met but we love you. We have never met Jack but we love him. We were there with you in the corner of the classroom hugging you both so tight. I know for sure that spring is coming for you too. Take care.
February 1, 2016 @ 12:44 pm
Your voice will open someone’s ears… your writing brings grace to so many… your love for Jack is just the tool he needs. They all have very strong powers, Carrie. Praying for all of you.
February 1, 2016 @ 12:54 pm
Carrie-I cried through this one. Cried because I understand and because winter brings our own share of challenges in this house with our little guy. I am sending you and Jack a hug. You guys are not alone.
Thanks for being there for us every Monday–through good and bad.
February 1, 2016 @ 1:09 pm
WOW!!!!!!! You are a very talented lady with a very special child…….God bless you and yours!!!
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February 1, 2016 @ 1:35 pm
I’ve never commented before but just want to throw out a cyber-hug to Carrie and all of the other parents who are part of this community. My 15-year-old daughter is perhaps higher functioning than some, but we also have a stew of ADHD, LDs and mental health issues to contend with, not to mention the usual swirl of adolescent hormones and the long days of winter. I often wonder what’s the hardest part: getting safely through a three-hour tantrum, worrying about her future (especially as we came to parenthood late), feeling guilty about the misery and pain of her “typical” sibling, grieving our tattered marriage and stressing about the career lost to full-time caring and advocacy (like most people, we could really use the second income). It’s all hard and I’m grateful to Carrie most of all for jutting her chin out and telling it like it is. There’s much more work to be done, but this blog is an important step toward making the world a safer, happier and more accommodating place for people who are “different.” Bravo to all of you.
February 1, 2016 @ 3:23 pm
Carrie, please hang in there! We were in a very similar situation a year and a half ago, it will get better! In our case, it required two major changes. We were faced with escalating meltdowns as well. For us, it took giving our daughter a break by homeschooling her for now. In her case, her meltdowns and anger were a cry for help. She was letting us know that she could not deal with the social and sensory stressors any longer. She simply needed a break. I realized that if a neurotypical child were desperately crying and wishing not to go back to school, it would have been a big red flag that she was about to reach a breaking point and that something had to change. In our case, the school had known her since Kindergarten and the response basically was that she was overreacting because of autism. It was a learning experience for all of us. In the end, I just wanted to give her some respite and reevaluate while homeschooling. We knew that our daughter could not suddenly become more neurotypical, and from there we just went into damage control mode. She was already getting depressed… -I have learned so much about her since then. – The other major game changer was when we finally had her started on a serotonin reuptake inhibitor (SSRI) (after I researched it on Pubmed for weeks). It turns out that serotonin is not only important in mood regulation, but it is also an important neurotrophic factor which is needed for brain maturation. In addition, serotonin is needed for proper melatonin production and sleep. SSRIs are indicated for management of anxiety, depression, and obsessive/compulsive symptoms. Serotonin reuptake transporters are abnormal in a subgroup of children with autism. These medications will not be the right approach for many children, but in our case, it helped so much. Please do not despair. You will figure out what Jack needs to be happy again. You are a brilliant writer which reflects how caring, sensitive and intelligent you are. Thank you so much for this blog and please know you are not alone. Thank you also for pointing out this unfair stigma associated with autism. A lot of the difficulties our children have seem to stem from the neurotypical world being a very rigid world that has a hard time empathizing with children on the spectrum. However, there are adults on the spectrum who are activists and who work very hard to improve the lives of people on the spectrum. There is hope!
February 1, 2016 @ 4:33 pm
No comment…. Just sending you a big, virtual {{{{HUG}}}}. Hang in there!!
February 1, 2016 @ 8:04 pm
Oh, so sorry you and Jack (and all your family) are going through this hard time. Our 9 1/2 yr old ASD grandson has had a terrible last week or so. He cried all day at school today and just refused to do anything. After school, his mother (an RN) took him to be tested for strep even though he had no fever or other symptoms of it. She had to talk the nurse practitioner at the walk in clinic into testing him and it was positive. Once before when his brother had strep and was sick (fever, sore throat, etc) he was unhappy for days, mad at everyone, crying, so his mom had him tested too and it was positive. We have wondered if he has PANDAS. It’s all just guess work. Sure hope you and Jack are able to find some solutions for his unhappiness. I love our little square peg that tries to fit in that round hole called ‘public school’ and empathize with you.
February 1, 2016 @ 8:41 pm
So nice to hear from another grandmother!
February 2, 2016 @ 8:14 am
It’s interesting to hear this because my children’s anxiety therapist says several of her patients go completely off the rails when coming down with strep even if they don’t end up having much in the way of symptoms (perhaps just a carrier). She’s even suggested we ask about it when our daughter’s anxiety has gone up very suddenly. Of course all illnesses reduce ability to cope and make anxiety worse.
February 1, 2016 @ 10:16 pm
Sending you not-to-tight hugs…
February 1, 2016 @ 10:40 pm
Thank you for putting your story, Jack’s story out here, for all of us – not only as a lifeline to many, but also because it shows your trust in all of us to care, to understand, and to offer you whatever we can from our own stories that might carry you along when you need it as you have done for many of us. My own sweet, tender boy was broken by the end of grade 1 in school. Broken. His spirit crushed, his heart aching with confusion and frustration and sadness at what he witnessed, be it the mean-spiritedness of some children towards others or the unfairness of some children praised for 100% spelling tests while others sank lower and lower into their seats, feeling the sting of not being praised. There was so much he couldn’t articulate to me. His feelings showed in his behavior… his anger, lashing out, throwing Lego across the room. Hitting himself, hating himself. Ultimately, when he told me he wanted to die for his 7th birthday, I pulled him out of school. I pulled him in, I held him close, I made his world as small and safe and warm and comforting as he needed it to be. In the words of a very very good psychologist who met him “Keep his world as small as you can, as long as you can, until he is as solid and strong and content inside as he needs to be to tackle the outside.” That was three years ago. It took three months of being home schooled (de-schooled actually) before he was ready to come out of his shell. Three years later, and he is the happy, sweet, amazing boy he used to be and I am so grateful.
Our story may not be the same as yours, but my heart aches for you and hopes for a soft warm light to guide him back home.
February 2, 2016 @ 9:23 am
That was very, very well said, both by you and the psychologist. When, my daughter was younger, the psychologist at the time kept saying that she “needed more social exposure not less.” It took me a while to follow my instinct and bring her home for home schooling, but I am so glad I did. She was just not ready to handle the many different stressors, and more exposure was like asking her to watch a scary movie so that she would learn to tolerate it. It does not mean it has to be for her entire school career, but just till she is stronger (although I am not against continuing home schooling through high school if needed). I hear so much that a child on the spectrum needs to go to a traditional school for social reasons, but social activitivies with families who are known to us and kind and in a setting where we can provide adequate support for social interactions proved to be much more effective in our case.
February 2, 2016 @ 12:43 pm
Yes GP! I have learned that following my own instincts is the key to finding the truth. Trusting ourselves to know deeply who our children are and what they need from us is so important and unfortunately, many of us are told over and over by “experts” that our instincts are wrong and so we begin to doubt ourselves and eventually to think the “experts” know more about our children than we do. After seeing the difference in my son by removing ALL academic and social pressure, I knew without a doubt, that the mainstream path was not his path. We have been homeschooling (or rather, unschooling) for three years now and our entire family is better for it. Happier, healthier, more connected and more excited about living and learning about the world than ever before. My husband is a teacher in the public school system and is amazed by the growth and learning happening at home. We go out, we do things with other “different” kids and families and interact with the world in a meaningful way, from grocery clerks to librarians etc. Many kids do well at school, many kids do not. Only you can truly feel what path your child needs to follow based on what makes them light up with joy, excitement and curiosity about life. For us, that is a divergent path from the “norm”, which I never thought we would be on, but alas, here we are, happier than I could have imagined three years ago. Best of luck to all on this fascinating journey!
February 1, 2016 @ 11:01 pm
Sorry you are having to go through all of this with Jack. I will keep you in my prayers and hope that he soon will get out of this “funk” and get back to that “old” Jack you know and love.
February 2, 2016 @ 1:05 am
Thank goodness for Mondays…I never thought I would say that.
February 2, 2016 @ 8:11 am
I’m so very sorry the world is too much for Jack right now. I know what it’s like as a mother to watch your child spin out of control away from you and into an abyss of emotional pain. I am sorry you are all going through this.
I just wanted to say that you often write posts that remind me of my children with anxiety disorders, but this one especially reminds me of my 11 yr old daughter who has severe generalized anxiety disorder. When her anxiety ramps up she gets angry and mean just the way you describe Jack. This is not the worst anxiety has to offer though. Just beyond this, the anger goes away for her and she just dissolves – crying, vocal/physical tics, keening, hiding under tables – she can no longer function in the world. That last phase is a very scary painful place to be for all of us. So when I see lots of anger and mean words and lack of sleep, my first thought is why is she so much more anxious and what can we do about it. Granted these are perhaps the hardest two questions to answer in the history of man. If anxiety is the culprit for Jack too right now, I wish you all the wisdom, luck, and perserverance in helping him. (We have tried all the following at different times: school accommodatins (homework changes, getaway spot in the classroom), years of cognitive behavioral therapy (including habituation therapy for sepcific fears), melatonin for sleep, occupational therapy, hippotherapy (the horses & instructors have been so good), all the medications in all the doses (zoloft, lexapro, prozac, hydroxizine), routines/schedules for the difficult times of day).
February 2, 2016 @ 1:40 pm
As a grandmother reading, listening and crying for Jack and all the kids and adults living with anxiety and on the spectrum my greatest sorrow is the inability to change it. My grandson is 16 and struggling with living in a world that does not understand how he processes everything said to him. I will continue to pray for Jack, his family and all the families who deal with this everyday. Carrie you are an inspiration to all of us. Thanking you for sharing as well as all those wonderful people who reply to your weekly post. God bless you all.
February 2, 2016 @ 8:42 pm
I have aspergers / autism. I’m an adult. I can fake being “normal” the things that got me going as a kid the things that bugged me the things you describe as I don’t know. They are all still there. They still bug me. They still drive me crazy. They still hurt me. I tell other adults and they say no. You can’t be. Your not like that. Yeah. I just fake it.
I think that’s why people say hide it. Some of us can fake it as we get older. So others don’t have
To deal with it or understand.
Stay with it Carrier.
February 3, 2016 @ 7:52 am
Sending Jack and your family love!! I can relate to this story very much. It made me cry, like so many things you write. Reading your blog and books are my therapy. Thank you. Praying for Jack to hold on, as better days are in store!!!
February 3, 2016 @ 8:47 am
Hi Carrie —
I just wanted to point out a misprint in your blog — you typed “Down’s Syndrome” and the correct term is “Down Syndrome” …. and while I wish it was true that others were not afraid of extra chromosomes (or wheelchairs, or braces, or Autism), unfortunately, people seem to fear what they do not know or understand. I am a sister to a man with Down Syndrome (and I am also a school psychologist) who does engage in aggressive behaviors/tantrums/outbursts with limited verbal ability to express himself, and it is scary and heartbreaking all at the same time. It’s so hard to feel helpless and not be able to “fix” it all. Thank you for sharing this post — sending you, and the whole family– love, wisdom, and patience as you navigate through this <3
February 3, 2016 @ 10:11 am
Carrie, am sending you and yours strength, patience and love. So many of us have been where you are, I hope Jack (and you) find peace soon. Remember to take care of yourself too!
February 3, 2016 @ 10:27 am
Hi Carrie, I was wondering if you could share a little bit about Jack’s reaction to the blog. I noticed that this post is addressed directly to him and I love that. Did Jack read it?
February 13, 2016 @ 12:44 pm
I just found your blog this morning, and sobbed through this post. I know that storm. For a long time I didn’t know the reasons. It went without a diagnosis for many years. Every time he started a new school or attended a new vacation camp, it was particularly difficult. It was so painful to watch, and I always lived in fear that they would ask him to leave.
Finally, my son was diagnosed this summer, when he was 10 years old. I haven’t told anyone other than his school, family, my boss (to explain all the therapy and doctor appointments), and close friends.
He is a talented athlete, and I haven’t told his coaches (he plays soccer, basketball, and baseball) out of fear that he will they will no longer include him or that they will discriminate against him, particularly when he tries out for, and makes one of the “elite” teams. He is a very talented athlete, which goes against the stereotypical autism diagnosis, so they don’t make the connection to autism.. Most people can see the behaviors, they just don’t have the label. I have continued to offer the explanations that I had before his diagnosis. I tell them that he has difficulty processing language and emotions, etc. so they won’t think that he is just being bad, disrespectful, or dumb, and give them suggestions on how to work with him.
I never know if I am doing the right thing.