Up the Hill
Dear Jack,
We have exactly eight days left to sixth grade, including today. We are in the home stretch, the final mile, the last bite of the big enchilada.
I have to tell you, this year felt long and short all at the same time.
Long, because you feel apart midway through. You fell apart big.
Short, because it’s almost over and then you switch schools for seventh grade. In our town, we call this going up the hill, because your next school is attached to the high school, which sits on top of a hill.
I kind of want to forget all about this year, the way you forget the pain of childbirth or a bad dream in the morning.
I want to forget all the times I had to pick you up because you were screaming and jumping too much to ride the bus.
I want to forget you hit a teacher.
I want to forget you bit your aide.
I want to forget I had to sign a piece of paper from the superintendent’s office with words like incident and aggression and containment typed out in black and white letters.
I want to forget all the mistakes I made.
I need summer.
Daddy and I sat in a meeting a few months ago and a very kind man on the opposite side of the table gently asked us, “How do you see Jack finishing out high school?”
And me and your father, well, we just looked at each other and back at the man and down at our shoes and up at the ceiling.
Then this man said a lot of words like traditional academic curriculum and practical life skills and until he’s twenty-one.
When he mentioned that last part, the part about you maybe staying in high school until you are twenty-one, I thought about how Charlie would cross the stage in a cap and gown with a diploma in his hand before you did and we would have a big party back at the house like a barbecue and you would linger, awkward and uncertain, while friends and family congratulated your younger brother on his graduation and clapped him on the back and slipped him slim white envelopes.
All your life, I’ve watched your two younger brothers and one sister pass you by; sprinting around life’s track while you seem to stand still. Celebrating their progress while at the same time noticing your stillness, well, it never fails to make my heart squeeze.
See, Jack, within a family there is an order. There is a sequence. It is not meant to be a disorganized game of leap-frog, where younger children outpace their older, taller, blue-eyed brother when it comes to things like communication and social skills and high school.
Some days, I don’t know how we got here—how I wound up a big round table with a lot of nice people, tossing around your future like the two sides of a copper penny.
I mean, obviously I do know how I got here. I got here by way of wonky genetics and a bunch of appointments with specialists and eventually, a diagnosis on a form.
Then I stumbled through the years telling millions of social stories and asking you to look in my eyes and quiet your body and hold my hand and pack your snack and take your medicine.
Yet here I am, standing at the crossroad of a proverbial coin toss, trying to call out heads or tails before the penny drops to the floor.
I am tired.
About a week after our meeting at the big round table, I had a dream about you.
I dreamed you were standing at the counter in a pizza place, trying to buy a pizza. Even though you were the same size as your 12-year old self, with the same haircut and blue-framed glasses, I could tell you were older.
You were trying to count out the change on the counter. It was the kind of counter that has a thick sheet of plexiglass laid over old menus and advertisements. You kept mixing up the quarters and the nickels.
I watched you get frustrated, and angry.
Suddenly you took a credit card out of your pocket and handed it to the girl at the register. She handed you back a slip with a pen but you kept shaking your head. You didn’t know you had to write your signature on the bottom. You walked out with your pizza box clutched between your hands. Your eyes were wild.
As soon as you walked into the parking lot, two big men walked up to you very scary-like and fast. One put his hand on your shoulder while the other one snatched the pizza from your hands and laughed in your face. They turned and walked away.
When they were gone you screamed and cried. You banged your head with your fists.
You were so, so mad and confused. You were hungry. All you wanted was to take your pizza home and put the box on the counter and eat a piece off of a paper plate.
For the whole next day, I carried this dream around with me. It nagged like a toothache, except the ache was in my soul. It was a soul-ache.
Before I dreamed of you, I wanted the easy answer. I wanted you to learn history and algebra and graduate on time and basically follow a very traditional academic trajectory.
The dream made me think differently. It opened up my brain to consider other possibilities–other goals–some simple and concrete, others more abstract.
I want you to know how to make the right change and sign your name and defend yourself in a darkened parking lot.
I want you to have the things that are rightfully yours; whether that is a timely graduation, or a credit card of your own, or a slice of warm pizza on a white paper plate.
I want you to be the best person you can possibly be, and that is going to take a lot of time and energy and strength and willpower.
I want you to know you are worth it.
Right now, though, what I mostly want is summer. I want a sweet release from your tantrums, your tattered blue homework folder, your frustrations on the playground. I long for this new season the way a thirsty person longs for water.
I mean, I know that summer doesn’t mean a vacation from autism, because like a nocturnal animal in the dark of the night, the spectrum never sleeps. It is without season. It knows no clock.
It doesn’t mean the exquisite ache in my soul will ever fully subside, but it will quiet for a time underneath the warm July sun.
And in this quiet, I can turn the imaginary penny over and over in the palm of my hand, and consider the many ways we’ll help you up the hill.
June 6, 2016 @ 11:27 am
My Nash is 10 but I had the talk with my IEP group. I wanted to know that he would graduate with his class…even tho I see the work he brings home is not the 4th grade work but 2nd grade work. I fear the future for Nash. It scares me that I cannot freeze him at now…I can make all the decisions. I tell him I am going to put cement blocks on his head so he will not grow up.
Nash is now making decisions for himself. Like decorating his room in the theme and color of him choice. WHAT? I took him shopping and he found a bedspread he liked and a picture he wanted…framed. Because big kids don’t just have posters on their walls but framed pictures.
Summer will be great. No tantrums about homework. No fear from me about sitting with him and doing the homework. But, since I work and my husband works and my daughter is in college but works….our schedules are going to be hectic. And Nash wants to do basketball camp and golf. But, this is far better than school where its obvious there are problems. This….he excels beyond belief! I love hearing he is amazing!
June 6, 2016 @ 12:42 pm
I ache for you, Carrie. I realize that in one great cosmic shift I could’ve been the mom of an autistic child. When I read your column I can’t help but try to put myself in your shoes, ask myself what I would’ve done. But I know that is impossible. I will never fully understand what you feel or how you think or react.
My best friend’s son is autistic. When he was younger I would’ve called my friend’s role Damage Control. Her son pooped in the furnace vent, melted chocolate on a bare light bulb, and managed to set his parents’ bed on fire. They are all still alive to tell the tales, if a little worn around the edges. Now that he is 24 there is a different kind of damage control. When strange packages started arriving unordered by my friend or her husband, they realized their son had memorized all of their credit card numbers and knew all of their passwords. They have changed all of their numbers and passwords since then, and are careful that their son isn’t around when they place orders on the computer.
I tell you all this to let you know that I know some of the story, but not all of it. I want you to know that when you are down, when you wonder why you are the one who deals with all of the messes, there are some out here who share your frustrations and heartaches, and would bear some of them for you if we could. Lean on us. Talk to us. We’ll listen.
June 6, 2016 @ 1:08 pm
I feel exactly the same we are ready for summer break.
This year has been such a long roller coaster ride with my 6 year old and kindergarten.
We got a couple months there where he went to class and followed along like a regular kid. He even went without his aid for a few days. Oh we were excited.
Of course all it takes to derail is one spring break or one sickness or a substitute teacher two days in a row.
My baby is going into first grade and i dont know if i could ever have a career because i need to be on stand by waiting for the phone call because he hit an aid or ran away or tore apart the classroom. Or like last week when my super sneeky boys whereabouts were unknown for ten whole minutes.
I dont like not knowing if he will someday catch up to his peers or if he will hold a job and have a family. We just have to take it one day at a time and hope he can just be at school for the whole day, learning or not.
I just want him to stay little forever, still draw faces on 12 inch balls and pretend they are a real person named wilson who needs to go everywhere with him. Still hold the chickens like they are the fluffiest and most snuggable creatures around because to him all animals are snuggable.
Yes summer should be much easier, all i have to do is make sure i have a giant size box of color gold fish, his dirt bike and of course his precious chickens.
I wont even think about next school year and the anxiety that comes with it for a blessed month or so.
Thank you carrie for writing about your jack and letting the rest of us know we are not alone on this ride.
June 6, 2016 @ 2:25 pm
Sometimes it’s too hard ~
June 6, 2016 @ 3:37 pm
Oh Carrie, your son is NOT standing still. He is just on a different timeline. I had to learn not to look at everything through my neurotypical filter. It did not happen over night. My child has come a long way. Jack seems to have come a long way! He speaks, bakes, he makes cheeseburgers, he makes playlists, tells jokes, and probably so much more. Try the new school, and if the hitting and what not continues (yup, my kiddo does that, too, when she is overwhelmed), then maybe, just maybe, it is not the right placement for him. Hitting is usually a sign of extreme stress. Please know that in public school, through the McKay scholarship, your son has the right to transfer to any public or private school of your choice. If he spent Oct. through Feb. of the previous school year in public school, then you should be able to transfer him wherever you want. Maybe he needs a public school that is considered an autism cluster school (lots of experience and other kiddos just like him and to whom he may be able to relate).
We all want the best for our children. It just requires lots of detective work to figure out what that may be. It probably won’t be the trajectory that we expect when view the world through our neurotypical filters. However, with time, if we keep trying to imagine the world from our children’s perspectives, we will figure out what makes them happy, and then, I am sure, we all will move heaven and earth to make that happen.
Here is a link that helped me put things into perspective in terms of developmental trajectory of an individual on the spectrum. Our children are developing, and they will get to where they need to be on their very own timeline.
http://yesthattoo.blogspot.com/2016/03/autistic-development-its-thing.html?m=1
June 7, 2016 @ 12:02 am
Unbelievably spot on…. You are such a support and I am so grateful for you and all you share…
June 7, 2016 @ 12:42 pm
Once again I share your pain and confusion on Jack’s future. My daughter whose son will be a senior next year has all those decisions to face regarding staying in school in the life skills program until he is 21 or graduate with his class. She will spend her summer with other Mothers facing the same problem. A program in her town to meet once or twice a month will try to fill in the blanks as to what takes place if she lets him graduate with his class (and he wants to).It must be so hard for all these children to try to understand both what lies ahead for them and why can’t they be like the other kids. Everyday my heart goes out to you and all the wonderful ways in which you have dealt with bringing Jack to where he is today. Please enjoy your summer and may God continue to give you all you need to move on through the next hurdle.
God Bless.
June 7, 2016 @ 3:17 pm
Hi Carrie, I am proud of you and for you. I look forward to finding your blog in my email even though it brings back so many hard moments in our family’s life. You bless me with your humor and dignity in the world of different-ness. Our son, now 43 years old, was diagnosed schizophrenic after the army. BUT in the middle of his breakdown and eventual diagnosis, I kept remembering “things” that been wrong for him all through his life.
Searching the web I realized (oh, so late) that my wonderful, confused, and lost son had always been Autistic on the Aspergers side of the spectrum. Drs would tell me he was a normal kid just going through normal boy issues he’d outgrow. He drooled till he was 6 but again I was told “when he gets in school and the kids tease him, he’ll be embarrassed and stop. He’s just lazy and doesn’t care”. !!!!! And so on and so on…I didn’t know there was SOMEONE out there who had better answers and it kills me to know how much he suffered. Help really was there, special, designed just for HIM, and us too! Too late.
I began writing late at night when everyone was out for the count and MY mind just hovered, circled, and twisted about trying to make sense of my life. In re-reading my ramblings, I’d find myself smiling at the discovery that I really did have a sense of humor about our lonely lives of fear. Not that I could react with humor in the middle of daily situations, but in hindsight (even by just a day or a week). Writing taught me to laugh, it took so much pressure and just released it sometimes like a crazy balloon in flight!
“Other” people ceased to be so scary, not even the monster hovering judges I perceived them to be. They were just ignorant. THEY needed teaching. The sting was gone.
I want you to know Carrie that you are on the right track. I hope other Moms find you early in their walk with loving someone so “different” and yet so wonderful. If I could give any advice I’d say, “Let yourself laugh again. It’s OK”. In my brother’s words: “If I can’t laugh I have to cry. I’m tired of crying”.
God bless you, your wonderful son, your family, and your readers! May the answers you need always only be a moment away. May you never feel alone.