My Full and Broken Heart: A Mother's Story of APD
By tkathleen on June 28, 2012
I have been sure that my son had this condition–or something like it–for so long that I have been writing it in on summer camp forms and church school registrations for years under "Additional Information."
"Mikalh has language processing problems. He will need patience and repetition of directions. Please do not assume that he understood the first time directions were given."
The perfectly understandable assumption that Mikalh (pronounced MEE-koll) would have actually absorbed the information relayed to a group of children has caused a number of problems for him, not limited to his entirely missing out on activities because he thought he wasn't allowed to participate, his ending up with the wrong group of children or his getting entirely lost in a large school building by himself.
Auditory processing, in a nutshell, concerns those functions of the brain that allow us to not just hear but make sense of what we hear. When there is a problem with these functions, we cannot pay attention or remember what we are hearing, we may have problems carrying out multi-step directions or take a long time to process verbal information and have potential difficulties with language, spelling and vocabulary. Academic performance can be low and behavior problems often arise in children with APD.
Mikalh was late to speak, late to string words together and late to make sentences. Due to this and what were termed "sensory issues," he was serviced for a year or so by a developmental specialist and an occupational therapist and then, showing progress, exited from services. At four–bright, talkative and friendly–he was accepted as a peer model into our local preschool for kids with special needs and then, heartbreakingly, was dismissed six weeks later due to his inability to serve as an appropriate example. For the first time, despite everything we did to try and mitigate it, he began to feel that he wasn't good enough. The school district tested him for delays that would qualify him for services and, although they found some gaps, nothing was unearthed that would allow him to attend the preschool. We placed him instead into a part-time playschool and tried to place Band-Aids on these new wounds to his psyche.
In kindergarten, Mikalh wouldn't listen. His teacher seemed to feel sure that, to some extent, this was defiance. I looked at my child–someone whom I knew to be alternately stubborn, kind, compassionate, brilliant, and always ecstatic and saw a very small person crushed under the weight of expectations he could not meet. He was angry, mostly with himself. He began to say that he hated himself and we put him in therapy. He was tested again and this time, the IEP team chose, at their discretion, to qualify him for speech services based on minor articulation problems and evidence that suggested compensation for a processing problem. He was tested by an occupational therapist and they found problems with proprioception–his ability to perceive the location of his own body in space. With therapies, emotional support and intervention, things began to look up somewhat.
Mikalh's testing had revealed a high IQ and a superior aptitude for mathematics and verbal expression. Yet this year in first grade, work that came home was incomplete, messy and the directions often misunderstood. A reading test mid-year revealed that he was reading two grade levels ahead. When I asked his teacher how his math skills were, she told me honestly that she didn't know because he wouldn't complete any work in class. Arriving home exhausted and desperate to play quietly and be left alone, I chose not to make him complete it and his teacher did not ask. Mid-year, his depression deepened and reports came to me of his kicking his kind and patient teacher. He would come sullenly home with me and when I tried to raise the topic of school and inquire gently as to why he had behaved this way, he would stop talking, lock himself in my car and sit in there for an hour. We began to seriously contemplate homeschooling him.
I know that in the far, far back of everyone's minds has to be the idea that my son is a ill-behaved brat that needs a good spanking. I know because that idea is in the back of my own mind with regard to other people's children and sometimes even with regard to my own. It is the idea that is in the back of everyone's mind all the time with regard to all special needs children. I worked for two years as a special ed. instructional assistant without fully appreciating this fact. The prejudice lurks there like it lurks that poor people have made terrible choices, that black people are dangerous, that Muslims are crazy, that smart kids are snots. It is a thought that seems germane to the situation, but it is borne of underlying assumptions, buried deep within our experience of something very different from the case at hand. It is also perfectly true that sometimes what is required is firm discipline. I have, horror of horrors, been known to place soap in the mouths of children who threaten to "kill" family members. This situation, I felt, was different. If someone is acting out because inside they feel fundamentally flawed, because the pain of not being able to measure up is like a medicine ball in their stomachs, then I think punishing them harshly for that behavior is the wrong approach. Mikalh earned–or failed to earn–smiley faces at school which related to screen time, but I tried never to punish him with anger. I told him simply and repeatedly that he needed to treat his teacher with kindness and respect and that I needed him to do his best. Sometimes, he made her a picture with an apology and a promise to try harder. That was all.
It was suggested by an IEP team member that Mikalh's primary problem was attentional and she pushed for a diagnostic evaluation for ADHD. Although I felt that no harm could possibly come from this evaluation, my own sense of the situation was that Mikalh's problem–or at least his primary problem–was not ADHD. Having two older children–his half-brothers–already with this diagnosis, I am not all predisposed to dislike the label when it seems accurate, but, for me it didn't explain the picture that is my child. As with the mass of the universe, something was in evidence that has not yet been explained. What is the dark matter that causes a bright child to fail at his academic tasks? A sweet child to burst forth in fits of rage that trample those adults around him, leaving everyone exhausted? What had caused the speech delay and the language processing issues? I had grown bitterly tired of looking at the effects of something and listening to grasping theories as to causes, each one as varied as the specialist who posited it.
A child cannot generally be diagnosed with auditory processing disorder before the age of seven. Mikalh would be seven in May. I started again emailing audiologists and, finally, I found one qualified to perform the necessary screening and willing to do it before the school year's end. In early May, Mikalh went for two screenings. The first series were tests of his ability to hear and he passed these with better than average hearing. The second visit, two days later, concerned his ability to process auditory information. The testing was long and obviously stressful to him, although the audiologist was sweet, friendly and consummately professional.
On May 16, the date of his seventh birthday, we received the following results:
All this suggests that Mikalh will have problems with processing speech quickly and accurately, difficulty listening in noise and poor short-term memory. Mikalh has APD.
It is suggested that he work in a quiet environment, that he be seated to face the speaker, and that directions be rephrased (not simply repeated) for him. Directions need to be chunked for him and provided in writing. He needs to learn to self-advocate and double-check his directions and an assistive listening device can be provided for him in the classroom. These findings will also qualify Mikalh to work in a Special Ed resource room next year during part of his day and justify changes to his IEP when the school year begins again.
Yesterday, I took Mikalh to Student Services for his long-awaited evaluation for ADHD. I filled out a Conner's Rating Scale symptoms checklist–perhaps for the tenth time in my life–and the district specialist, a pleasant man who seemed knowledgeable and willing to listen, spent fifteen minutes with my son. Based on this and on the rating scales turned in by his second grade teacher, he will submit a report that will indicate if Mikalh also has ADHD and make educational recommendations based on this. Because the symptoms of APD and ADHD are so similar, I am not at all sure how anyone will be able to tell in fifteen minutes if my son is also affected by another disorder, but I suppose, being no expert, I may just fail to understand this. In any case, his parents and IEP team have the ultimate say over any label applied to him or accommodations mandated. The decision whether or not to medicate him would be separate and strictly ours. The academic dissection of Mikalh continues.
I have given you a lot of information. This is not really a blog that is about disseminating information, but I have done it here because very few people know about this disorder, which is not as uncommon as you may think, and it is my hope that people will begin to recognize it, to wonder if that might be the problem with some of the kids they are dealing with. But I also want to share my heart with you because that is why I write here.
During these four weeks of summer my son has read four novels. He has researched stink bugs, assassin bugs, nuclear radiation and the Revolutionary War and, with help, typed up his research. He has written a poem about our cat and learned about fractions by cutting up and eating oranges. He has taught himself to draw. He feels happy, confident, capable. As his mother, I want to send him to school not so that he can check some boxes of skills for a report card, focusing attention on what we are "worried about." I want to send him to school to know himself as a scholar, a poet, an artist, a community member. I send him there to learn how to follow rules, to learn how to make friends, how to work for adults that are not his parents, to function as a group, to fail and to try again, to succeed and to celebrate. I send him with the expectation that he will be taught what he doesn't know, helped with what he can't do, given a place to feel successful.
He should not be so much happier here than at school.
I am angry. I am sad. I am hopeful. I am delighted in my son. He is an easy child to teach one-on-one and a difficult child to teach in a classroom of 25 students. He is a splotch of color on a black and white page. I don't want him to fail. Not one more day, one more month, one more school year. Neither do I want him to "get by" and fail to realize his potential, splitting the difference between APD and giftedness by maintaining mediocrity. I want him ultimately to know himself for his own gifts the way I know myself as a writer. And I do not care if, in order to achieve this, he has to be pulled out for so many services that he is rarely in his regular classroom. I fail to see the value in his sitting there another year, dropping crayons and doodling on worksheets, missing free time because he's never, ever done with anything.
My heart is full and it is broken. I have worked in the schools too long to think they can do for him what I would have them do. And I have worked there too long to think I can give him at home what he can get there. I want to break free and run away with my child to the rangey hills of our own living room, foraging for knowledge among tree trunks and watching passing clouds. And I want him to have a place among his friends—a place in the herd, in the cozy center of things, a chance to be at home in the world. I want, like I always want, both of two mutually exclusive alternatives. The decision we made is to keep him in school and to check at Thanksgiving Break to see how he is doing. But I am afraid of a future that demands ongoing temperature checks, month after month after month. I hope vaguely that this might be the last.
Where are you going with this, Tara? I have sat staring at my last paragraph asking myself that now for ten minutes. I don't think I know. Maybe here: It is hard to have a child with a disability. It is an easy, obvious thing too say like "flowers smell pretty" and "having the flu is miserable." But uttering trite and simple sentences doesn't bring the scent of lavender to your nose, effusing your whole consciousness with the bouquet of an English cottage, or evoke the memory of limbs burning straight through with ache, consciousness eaten alive by fever, breath choked back by veils of mucous. Saying it doesn't make you feel it unless you let it. It is hard to have a child with a disability, even one that's minor, even one that doesn't look like a disability.
It is hard enough without the prejudice of "He has to learn to do things he doesn't like." "He needs to do what the other kids are doing." "Why doesn't he have to do all the work?" "My child is penalized for being smart and well-behaved while some are rewarded for being difficult." It is hard enough without being crushed between the twin stones of expectation for parental advocacy and anger at parental interference. It is hard enough without having to fight.
In the quiet space in my heart, there is more than enough room for Mikalh. Room for him to learn in his own way. Room for him to forget and ask again for directions. Room for the creative interpretation of curriculum. Room to read at a higher grade level and write at a lower one. I am still waiting to see if there is room enough in the world outside our home, the world of experts and instructors, the world of loud conversations, worksheets and report cards. We are halted for summer–suspended in animation, the two of us–just faithfully waiting for the fall to come and bring us where it will.
Then we shall see.
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