Tuesday, June 26, 2012

My Full and Broken Heart: A Story of APD

Auditory processing disorder.

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:

Mikalh has difficulty with auditory decoding and tolerance fading memory. His auditory closure ability is abnormal for the right ear.

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.


  1. This is a wonderful blog about your struggle with your son's condition. My heart goes out to the both of you! I can understand you wanting to keep your son in the mainstream at school. The social life, P.E., working in groups and so forth. But, I think you should do whichever will help to bring out Mikalh's gifts. That's my biggest beef with teachers is their failure to do this or to even try. As his brain matures and grows, he might out grow some of these problems. I fought an ADHD diagnosis for my son and glad I did. He just needed to repeat first grade and as the years progressed, his brain matured and settled in. Best of luck to you!

    1. I admit I still feel on the fence about all this so any decision we have made is always subject to change based on feedback we see from our child. My feeling is that we finally have a diagnosis and a chance for pull-out to a resource room so we need to give that a shot before signing off. He says he wants to stay in school because his friends are important to him. And, of course, I work there and would have to give up my job to home school full-time. But we shall see. Nothing is more important to us than his happiness. Thanks so much for your kind thoughts and support.

  2. My heart goes out to you and Mikalh, Tara. You are his best advocate. Keep on. Keep on.

    1. Thanks, Darlene. This is a part of being a mother I didn't really know about going in, but I have to say that is the part I think I may be best at. Thanks so much for the encouragement.

  3. Thanks for this, Tara. I don't know if you ever knew that Sequoyah showed many signs of Sensory Integration Disorder when he was younger. It was one of the reasons for being so slow to potty train and one among many reasons for keeping him home.

    He was able to follow directions in general, but noisy environments couldn't concentrate or comprehend directions, and became crabby and overly emotional. I still notice a tendency have problems focusing and following directions, and increased irritability in louder environments, though nothing like when he was little.

    I still suspect something is up with him. As you know he had a very hard and miserable first year of school this year, only one of the issues being math. When I asked what he hates most about math, he replied that when he tries to do problems, "They look crooked, and it's hard to understand the problem." I have, more than once, considered having him evaluated for services beyond GATE.

    Tell Mikalh I think he is absolutely perfect just the way he is, and I love him.

    1. I remember that, Mimi. I'm sure the issues Mikalh has affect Mike as well and it makes sense that there is a hereditary link. (Note: Mimi is my sister-in-law and Sequoyah is my nephew.) I wonder if anything would show up on testing for him. With Mikalh, we found gaps but no explanation for them until they did the actual auditory processing tests, which we did privately through our insurance and then gave the school.

      We spend a lot of time telling Mikalh that everyone is unique and that everyone has strengths and weaknesses, that there are so many ways to be smart. We have been honest with him about what we found on testing. I would rather have him think he has APD than that he is dumb. Right now, I'm not sure if he fully appreciates the difference, but I think he will later. When he can accept and advocate for who he is, I believe the world is his oyster. Thanks for the love, now and for all these years.

  4. I've never heard of APD before, so thank you for sharing this.
    I don't have anything profound to say about parenting a special needs child. I love what you said- it's hard, "even one that's minor, even one that doesn't look like a disability". My strongest belief is that parents need to be trusted. We know our children best. Even if we don't have a medical or teaching degree, our opinions matter.

    Hurray for summer and being suspended in animation.

    1. I love summer so much I am savoring every moment. And I know, too, that summer often sucks for the parents of special needs children with more complicated issues, so I am deeply grateful for the deep enjoyment I have. It's worth saying that, in general, I am grateful that my path is easier than many.

      I think when we can have our eyes open to our children–to who they are, who they can be, not just what we want them to be, not just what they aren't–we can do incredible things as parents. As always, so glad you commented.

  5. Mikalh is a wonder--an inquisitive, imaginative, smart and creative child. I only knew him for two years and really didn't know him at all. These are my impressions. I've worked with all kinds of kids over the years and have been a special ed. teacher---we can't measure the goodness, the future outcomes, the possibilities, the flowering of any human child by what they do in schools. (I have a problem with schools) Of course it's good to know that Mikalh interacts with the world in his own unique ways and that some of those ways will not contribute to 'behaving' in a school setting. I've seen kids who seemed to have troubles with school become brilliant in so many ways as adults. I have counseled parents of extremely troubled kids or extremely physically or intellectually limited kids and I know the heartache they endured. You're right---it sucks tremendously for parents--it is difficult. You and Mike are wonderful parents, don't doubt that for a second. Your love and tenacity to find the right situations for Mikalh will support him and guide him. Thanks for sharing this story with others--your honesty about your feelings, Mikalh's feelings and negotiating the 'system' are valuable and important. You too are a wonder Tara!

    1. remember, i'm not gourmet girl---I'm benette!!

    2. Benette, Mikalh was so lucky to have you in his life when he did. You are greatly missed and I am so grateful we can have contact this way.

      I am both a fierce advocate for and a fierce critic of schools. I have been blessed to work at a school under a principal who gets it that children themselves cannot be measured, that the most important skills are not academic and that children are fires to be lit, not vessels to be filled. Even so, the structure of school itself makes it hard to do right by some children. Nothing but good, talented people have taught my child, but they have done so armed with criteria and standard practices that don't happen to work for him. It is easy to adapt education to one child, hard to do it for 25. Therein lies the conundrum, I guess.

      I believe in the end, that Mikalh will be a brilliant, talented, creative adult. My question is always how well he will survive the ordeal of being educated in the meantime.

  6. I think my mother may be able to understand what you are going through. As a child, I was very quiet. My parents thought I couldn't speak, and perhaps was also deaf. After many tests, the doctors told my mother I had trouble processing information, and there was a chance I could be autistic. It was in adolescence that my therapist told me I had sensory processing disorder. By then, they felt it was too late to do anything. My poor parents had been called for meeting with various teachers dozens of times. I didn't cause much trouble, but was very quiet, and refused to participate in group activities. No one knew how confusing everything seemed to me. This is why I like reading so much. It's the only thing that makes sense. Watching television, or listening to music, can be very frustrating. There's so much going on. Sometimes, I am not very social. Meeting new people can be embarrassing. Let's say, for example, a woman approached me at a coffee shop with the intention to befriend me. If there is music playing in the background, or there are other conversations going on, my mind will try to shut down, and I will slur my speech. I am just so glad that your child can receive guidance and help now. It will make all the difference in the world.

    1. Thanks so much for sharing that with me, Nellie. I find it so valuable when someone affected by a disorder (why do I hate the word disorder?) can articulate so well what it is like to experience it. I am sorry your condition wasn't identified earlier and that childhood was harder than it had to be.

      My husband believes he has what Mikalh has and he says he cannot separate background noise from conversation at all, so he hates talking in large groups. I suffer from chronic, low-level anxiety and it makes me act very strange and borderline rude on meeting new people.

      I guess the take-away is we never know WHAT is going on with someone who may appear to be acting strangely, do we?

  7. Yes, we have experienced all of this. You and I have walked in the same shoes. While our household sees many more diagnoses, with one child there was a time when sensory issues, ADHD and APD were the three concerns. Having faced a life of special needs with his brother, I wasn't ready to "give up" on this one, and I felt that I was. It broke my heart to recognize and realize the challenges.

    We placed him in a regular ed room with modifications and a one-to-one. Generalized anxiety kicked in, however, and a different story has been written for him since Christmas. I've homeschooled with push in services since then and will do so next year for fourth grade as well.

    He needs to do this his way. These years are so important to the foundation of who they are, and your background and spirit have placed you miles ahead of us mere mortals who had to learn that the hard way.

    I'm sorry things turned out this way. You are doing a great job!

    1. "He needs to do this his way." I think this is the essence of it, that need. Thanks so much, Amy. It's moms like you I think of when I am reminding myself that not so much is actually asked of me at this point. I am hoping that, now that we know what he has and what he needs, there's a chance he'll be able to get it. Thanks for the support.

  8. I remember reading about Mikalh in earlier posts and it was good to find out how things are going. I wish all the best of good will in your resolution of this. Of course it may be a mixed solution or one you haven't realized. I home educated my sons, one of them through most of primary and the second until this year when at 16 he went to technical college to obtain a year 10 certificate. His study has taken a backward step as the program is quite vacuous (made simple for school dropouts).
    I was involved with a home education group. We met every week and many of them got together regularly (my son didn't seem to form any close relationships there).
    It wasn't all sunshine and roses but I loved learning with my kids (especially when they were young) and would do it all again.
    Maybe part time attendance and part time work for you could be a way. If the school was in agreement he could go for the subjects (or sport) that are easiest for him to handle in the classroom environment.

    1. Thanks for sharing your son's story, Julie. I'm always excited to hear what people have worked out. The option we looked most closely at was half-day schooling for him and that is still our back-up plan. The reasons we decided, for the time being, to keep with full-time, are that the 2nd grade day is structured so that he would likely miss out on the most hands-on part of the curriculum if we pulled him out and wanted him to still get services. And we felt that, given his personality, he would always feel left out because he wasn't doing everything the other kids were. We're going to look again after 3 months of school and see if we need to reconsider. I have to say, that "one I haven't realized yet" sounds intriguing!


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