The Things We Already Know
“Let me just tell you, I really enjoyed working with Jack. He was incredibly cooperative, and I think we got some really good information during the testing.”
I leaned forward eagerly in my chair.
“First, I’d like to talk about his working memory.”
I nodded. I had an idea of what working memory was.
“Well,” the doctor said kindly, “Picture our working memory to be this entire table.”
She spread her hands over the dark wood surface. “We have all this space to arrange our ideas.” She fanned some of her papers out to demonstrate.
“We can organize the things we’re thinking about. We can put some things here,” she said, gesturing to the right.
“And other things here.” She moved a folder to the left.
“But Jack, well, his working memory is more like this.” She made a small circle with her hands in the empty corner of the table. “He doesn’t really have as much.”
He doesn’t really have much working memory. His table is empty. Like a gust of wind on a rainy day, autism has swept all his cerebral papers and folders and post-it notes to the floor.
“It’s as if we all have a filing cabinet in our minds,” she continued, stepping inside of my reverie. “It’s where we store all of the information we absorb throughout the day. Jack has his own kind of filing system, but it’s hard to know what that’s like. His information is, well, it seems complicated.”
I uncrossed my legs and then crossed them again. I glanced at Joe in the chair next to me. He seemed to be squinting at something on the wall.
“His cognitive thinking is quite impaired. He’s probably less than two percent of his peers at this point, but it’s difficult to tell because his anxiety gets in the way.”
“Based on his scores, his reading comprehension is close to that of a first grader.”
“While I was testing him, he often said things like he feels like a loser—that he feels alone.”
“When I showed him a math problem, he would tell me he’s dumb at math, he can’t do it.”
I struggled to stay focused. I pictured Jack in first grade. He was so cute. I had bought him a red backpack for the first day of school. His name was stitched across the front in white letters. He still uses it.
“You see, he doesn’t process language the same way we do. For Jack, listening to people talk all day is like you or I sitting in a French class, except we don’t speak French. He only understands bits and pieces here and there.”
Bit and pieces, here and there. There and here, pieces and bits.
“I do think he’s probably a little depressed.”
I felt a wave of regret and fear so powerful, it was like nausea. The room was hot. The dress I was wearing—the one I’d kept from Stitch Fix even though it has a pattern on it and I never wear patterns—was tight.
When Jack was born, Joe bought me a huge candy bar called Toblerone from the hospital gift shop. It’s the kind that comes in a long, tubular box shaped like a triangle.
Sitting in the warm conference room, listening to the neuropsychologist share the results of Jack’s testing, I thought about that candy bar.
I thought about how I put it on the little table next to my bed and nibbled at it for the two days I stayed in the maternity ward. I thought about how Joe teased me for eating almost the whole thing, and about how we started to call our brand new baby boy Tobes; an iteration of Toblerone because he was practically the same size as the candy bar when he was swaddled.
My son has autism.
My son has anxiety.
My son has little working memory and low cognitive functioning and trouble processing language and maybe a little depression and his reading comprehension is around a first grader’s even though he just finished sixth grade and he thinks he’s dumb at math.
Now we mostly call him Jack-a-boo, but every once in a while we still call him Tobes, although never directly to him, but when we’re talking together late after the kids have gone to bed or when they’ve left the dinner table.
Tobes is lonely.
I mean, we know all of this. Of course we know it. We know he has trouble keeping information in his head and no matter how many times I ask him, he never understands how Pippi Longstocking might feel after her father died in a shipwreck. Emotionally, he hasn’t been himself in months.
Yet I was wholly unprepared to hear the things we already know echoed back to us in the black-and-white, bell-curve-and-statistics of a neuropsychological test.
It’s as though we’re chipping away at him, piece by piece, until one day he’ll be nothing but a shell of a person.
When Jack was little, his needs were so much more concrete and tangible. He had no words so we bought picture books. We pointed to the apple and the banana and the monkey and the duck. We flapped our arms like a chicken and drew circles on paper with crayons.
Executive function, theory of mind, reading comprehension, isolation—they each disappear like vapor through my fingers; these fine, tenuous ghosts of his autism for which there are no picture books.
He is my son.
I heard a car in the parking lot below us. The radio was playing but then someone turned the engine off and the muted music stopped abruptly. Time is running out, I thought to myself.
Time is running from us. Running time running clock running water running shoes.
But he’s so funny! I wanted to shout. Just the other day he made the funniest joke but I can’t remember it right this second.
I wanted to tell her about the time we were driving and we saw a stop sign that was covered in branches and a half an hour later, after we had already walked around Target and bought a new bath mat, he said to me, “They should cut. Down the tree.”
I said, “What tree?” And he said, “The tree. Covering the stop sign.”
I wanted to say that every Saturday morning he rounds up all the hampers in the house and puts all the dirty clothes into the washer and starts the laundry.
I want to cry out that he can’t be lonely because he has twenty cousins and three brothers and one sister and a puppy who all think he is the sun and the moon and the stars and the sky.
Like an expensive shiny vase that someone knocked to the floor and broke into hundreds of pieces, I longed to glue him back together again into a whole, unimpaired boy.
He is my son.
Mostly I wanted to run home where he was playing outside with his brothers and sister. I wanted to hug him as tight as he would let me and smooth my hand over his soft crew-cut—the one we’d gotten that very afternoon at the hair salon in town.
I wanted to drop my head close to his and whisper in his ear the one single phrase I know in French.
Je t’aime, my Jack-a-boo.
I love you.
June 27, 2016 @ 11:14 am
You know him better than anyone ever will. This was touching. I can feel the depth of your live.
June 27, 2016 @ 11:16 am
Right there with you. . . as you describe Jack its like you are describing my own son who is 11. Working memory is our devil as well as mental health issues. No one has been able to give us any concrete solutions. . . hope you get some.
June 27, 2016 @ 11:31 am
I have a Jack with autism..also ADHD, Down syndrome, he’s deaf and doesn’t communicate with words although we normally know his needs. Your stories make me cry, but I need to see how others cope because we struggle most of the time. Were always looking for answers or suggestions. As you do we love our Jack.
June 27, 2016 @ 11:33 am
What does “time is running out” mean? My almost 5 year old son has autism. I know we are all different but it seems like you are paving the way for our life. So many similarities. I appreciate your writing so much, thank you. I wish the best for all of us… I’m not sure how to come to grips with everything…
June 27, 2016 @ 12:37 pm
P.S. As the evaluator mentioned, Jack’s “filing system” is probably complex (because it is different from what many of us know). So, information is likely getting in, stored, and retrieved in a different way than what many of us are familiar with. It is like a different operating system. It helped us when we figured out that our 12-year-old child was not at all a verbal learner, but more of a visual and kinesthetic learner. So, when we present info. in a different way, one that works for my daughter, it will get in. Sometimes it is pictures, movies, or hands-on projects that will help her learn, but very, very rarely does her learning occur through listening to a discussion or lecture. It is quite a bit of detective work. We finally just asked her. How do you learn? What does not work for you? She told us that she stores information in a cubby-like system in her brain and that the cubbies are not connected to each other. She told us she reads each letter of a word at a time (she does not see the whole word at ones). Finally, she told us that verbal learning does not work for her because she thinks in pictures and in something that is her very own language, and she has to translate every word that goes in and comes out. So, by the time she translated a question or a fact, she will have missed more information or may have taken too long to answer a question. BTW, she also sees numbers and week days in colors. Just remember, the operating system may be different and may have a hard time when using the wrong software, but it is likely a very powerful operating system under the right circumstances. Good luck!
June 27, 2016 @ 1:04 pm
You always get to the heart of things. My guy is 8, going into 2nd grade, and we did another “BIG DEAL EVALUATION” last year with the psychologist. It’s always such a shock to hear things so clinically when you see this child in front of you that has come so far and can do so much. I’m never as prepared or strong as I think. A test (though very useful) can never come close to describing the person we know and love so well. Thank you for your words.
Irene K Tate
June 27, 2016 @ 2:02 pm
Very Very well said, you captured what it is like to sit through a neurpsych appt. They are so hard to sit through or even read. I cried hard. My son is 37 with a severe TBI, we are waiting on getting the newest report. I’m curious how I will feel when I read it. It is never really the person we know but at the same time it is. God will give you the strength. Hang in there. Love your writing. Praying!
June 27, 2016 @ 2:40 pm
It’s just numbers, Carrie. They don’t define Jack or what he’s like or what he’ll do. Time’s not running out, he’s just on a different clock than the rest of your kids. Have faith. Jack will find his way.
June 27, 2016 @ 3:35 pm
Oh dear, please keep believing in Jack. If I have learned one thing over the last 20 years of my medical career and 12 years of being the mom of a child on the spectrum, it is that just because we cannot access or properly test for something, it does NOT mean it is not there. Of course, Jack has working memory. He would not be able to do the things he does (laundry, making cheeseburgers, joking, etc.) if he had no working memory. It simply is not possible. He may be too anxious and his processing speed may be slower so that these test are not useful for him. These tests can produce falsely negative results. It would be like testing a blind person with a written test that is not in Braille.
The same is true for his cognitive abilities. Too many times I have seen or heard of children who were thought as having cognitive deficits just because they could not respond in a way that would result in high scores. We know that a lot of children have slowed processing, expressive language difficulties, and probably because of this and the demands at school, anxiety. Of course, he is depressed. He feels like a loser. He struggles. He probably does not get the support he needs at school (most likely not be because they do not mean well, but because they may lack the expertise).
However, the most damaging, and unprofessional misinformation that was communicated to you by the evaluator, was the comment about running out of time. Two things: We know that brain plasticity does not stop at age 7 or 8. The brain undergoes a second phase of major synaptic growth and pruning in the preteens, and continues to develop through the teens and in boys, the frontal lobe is not fully developed until their 20’s. Then, the brain continues to “update” myelin sheaths till old age. It just does not stop. Furthermore, we are never too old to learn. That includes individuals on the spectrum: Children and adults. In fact, since the frontal lobe does not fully develop till much later, learning may actually be easier once the brain has matured (better executive functioning, for example).
The evaluator (a doctor?) made a very damaging statement. Nobody should destroy someone’s hopes. I recently read that Albert Einstein was sent home with a letter in fourth grade. His mom said that the letter stated he was too smart for the school and they had no teachers to teach him anything new, and she would just have to teach him herself. Decades later, after his mom had died, he cleaned out her desk. In the very back of one draw, he found that old letter. When he read it, he cried. It stated that Albert was extremely unintelligent and that he would never amount to anything and to not send him back to her school.- Of course, most children are not going to become physicists, but nobody can or should say that they are doomed.
Roald Dahl is another of many examples. If you read his biography “Boy”, you will see his report cards. Again, teachers felt free to say that a child would not amount to anything.
Last but not least, please consider looking at Jess Wilson’s blog (Diary of a Mom). She was told by a re owned Boston doctor that her daughter would never really speak or interact with the world. That child proved everybody wrong. She now has a mantra,which has become my mantra as well: “Now is not forever, and never is a load of …”
So yeah, there is Not.A.Doubt.In.My. Mind. That Jack is going to grow, learn, and mature, on his very own timeline, and that he, with the love and rncouragement of his awesome family, will succeed in live and be happy. In the meantime, we parents just have to make sure that society does not trample our children’s self-esteem and hope for the future, which is the one thing that could really hinder their efforts to make a happy life for themselves. (((Virtual hugs)))
Lynne Kinghorn Agnoletti
June 27, 2016 @ 5:52 pm
As a psychologist myself, I want to remind you neuropsychologists are specialists in TESTING neuropsych functioning. The problem is they have to GUESS what’s going on inside someone’s head if it doesn’t ‘show up’ in ways that fit their tests. YOU are the specialists in Jack! Re-read Temple Grandin’s story–a brilliant woman who also wasn’t “typical.”
June 27, 2016 @ 6:55 pm
I feel your pain. I can feel how much you want to given him the best chance in life by trying to prepare him for the “real world”. When my 10 yr old on the spectrum was first tested at the age of 7, I already knew in my gut what he really needed, but listened instead to those outside voices telling me he “just needs to learn how to cope better” or “needs to be given consequences” or “needs to grow-up”. When the amazingly kind and incredibly insightful psychologist said to me “The best thing you can do for him is to keep his world as small and safe and simple as you can for as long as you can until he feels solid and strong and loved and ok with who he is before he has to tackle the so called “real world”. Every kid is different. Who is Jack… what lights him up… what is his passion, his love, his strength, his unique gift for the world? Those answers are really all any of us can ever hope to find out in life and to live accordingly, whether on the spectrum, cognitively in the 1st percentile or in the 99th percentile. I have let that advice give me strength and hope when everything else feels frighteningly hopeless. When I keep sight of his heart and his joy, I know deep down, as long as he feels loved and safe and happy, he is going to be ok – more than ok – he is going to live the best life anyone can ever hope to live. I love your writing Carrie, and am so grateful for your openness during these struggles.
June 28, 2016 @ 4:26 pm
Please don’t let all of those tests limit what you do and try with Jack! Push. Keep trying to find activities and friends that make Jack feel connected and understood. It is exhausting, I know! My guy is almost 17. We were told he would never make friends, never understand humor or sarcasm, never live a “normal” life. Well, who cares? He has friends, he makes his own jokes (some are very funny), and who the heck wants a “normal life”?? Max is going to have his first real job in a couple of weeks. He may not succeed, but he might! We keep trying. One day he will be an independent, self-sufficient adult. Jack will, too! I believe in him, and you. <3
July 2, 2016 @ 2:11 pm
Hang on. You are doing all the correct things for Jack, otherwise God would shove you in a different direction. He gave Jack to you because He knew what He was doing.
Scott Dad to Heather age 31, Angelman Syndrome.