Invisible Disabilities

shutterstock_107111012It is difficult as a parent to admit to yourself that your child is different. I can’t even say that I was living in denial, because if you are truly in denial then you’ve already admitted something to yourself, but you have consciously or subconsciously chosen to ignore it. I just thought my child was a little quirky, a little clumsy, nothing initially raised alarm bells to my untrained eye (oh, how this would change…).

My daughter, M, is my first child and therefore, I had no basis for comparison as far as developmental milestones. At her check-ups each year, the doctor always said she looked healthy. No red flags on their end. A few times in preschool, a teacher had approached me to refer my daughter to early intervention special education for testing because of a speech delay. But, M is growing up bilingual, and often times children who are raised bilingual begin to speak later than the average monolingual child. This is due to the extra processing required for parsing out the two languages. So, as I suspected, when we went through with the early intervention testing at age 2 1/2, the specialists said everything was within range for her age. The experts told me that everything was fine, so therefore everything must have been fine!

She just is who she is…

But, everything was not fine and I had a few more hints along the way that suggested that maybe she was different. The second incident happened when my daughter and I were visiting an old childhood friend of mine who happened to be a Special Education teacher. My daughter was happily running around my friend’s house, but getting close to bumping into many things. I had to use my mommy Ninja reflexes to save my daughter from a few close calls. After one such close call, my friend (who is not the most tactful person in the world) turned to me and said, “Now, is there something wrong with this one?” I looked at her, surprised and offended, and said, “I don’t know, she’s 2?! She just is who she is and where she is at is where she is at.”

shutterstock_107087462That moment was a turning point for me. Even though I had just dismissed my friend’s open question to me, I started to really observe M compared to her peers. Most of the time, she seemed right in line with the rest of the other preschoolers. At times, she even seemed more gentle, compassionate and thoughtful than many of her peers. She was inclusive in her games, and proudly, quite popular in her class. But, there were other things that didn’t seem to jibe.

Physically, she ran very differently than the other kids her age. The other kids ran like little machines, my daughter ran like a muppet. Arms and legs flailing all over the place and her head waved back and forth while she ran, not unlike Stevie Wonder when he sits at the piano and sings. My daughter also didn’t really like to draw initially. She rarely chose to doodle. But, I chalked that up to a personality/preference thing, and didn’t place too much weight on it, even thought all the other kids in her class would, at least, doodle occasionally. All in all, things were good, she had lots of friends, she was a sweet, caring kid, who was silly and funny and 100% herself in the purest form.

I wish I could say this was the end of our story, that I and everyone else accepted her just as she was and we all lived happily ever after. But, this is not how things evolved. More differences started to present themselves at the beginning of elementary school. During her Pre-K year (a transitional program at her school), after the first week, M’s teacher approached me and asked me if I wouldn’t mind asking M’s doctor if he thought she showed any signs of a developmental delay. She told me that M didn’t present a dominant hand, and she had trouble making a dark mark with a pencil. Her grip was weak, her directionality was off, she couldn’t mimic the gestures being taught in their little Martial Arts P.E. unit, and she was prone to falling and bumping into things.

The OT suspected that M had a vestibular processing problem

I respected the teacher’s request, and did my due diligence. I asked M’s pediatrician to do an evaluation. He, again, said there didn’t seem to be anything wrong, this was just her pace of development and that she was in the normal range. I relayed that information to the teacher and she seemed to accept the answer. But, this put another nagging voice in my head that wouldn’t go away, and I continued to dig for answers.

After talking to the school principal, I decided to take my daughter to an Occupational Therapist* for an evaluation. During the initial phone call, after hearing my description of M’s run, her clumsiness, and problem with holding a pencil, etc the OT suspected that M had a vestibular processing problem, and that it could be trained to improve over time. I was relieved to hear that this was something that could be worked on, but the relief was fleeting.

After the actual evaluation, the OT thought the problem might be more pervasive than what our initial telephone call suggested. M had more than 2 years delay in gross motor and fine motor functions. The OT sent us to a trusted Developmental Pediatrician** to test for Autism Spectrum Disorder. I found this really hard to believe. My daughter didn’t seem to fit with the behavioral profile of a child with Autism. But, again, I was not the expert and so we went ahead and tested our daughter for Autism. This was not an immediate process. Developmental Pediatricians are few and far between, resulting in long wait lists to get an appointment.

While we were waiting for the appointment date to come up, I had updated M’s teachers with the evaluation from the OT and the further testing the OT was recommending. They were brought up to date with the information, and we brainstormed together as to what they could do to help M out in the classroom. Everyone was invested in helping M.

Once we finally had our turn for M’s evaluation, she, as suspected, was not diagnosed with an Autism Spectrum Disorder. Her official diagnosis was Developmental Coordination Disorder, Sensory Processing Disorder, and borderline ADHD. Two out of the three diagnoses given by the doctor were not officially recognized by the DSM *** (more on why this is significant later). Once again, I relayed the latest information to the school, gave them the full paperwork and reports from the various health care professionals we had seen and together, we made further plans for accommodations. Our subsequent meetings were productive.

Stuck between the two worlds was my child

At the OT’s recommendations, M was given the following accommodations at school: special grips with which to hold her pencils to help strengthen her hand, special paper with raised lines that she could see and feel, a special squishy gel cushion to sit on to force her core to fire and give sensory input to her brain, and the teachers, on their own initiative, implemented physical, desk-side breaks for the entire class to do together that were based in the Brain Gym protocol****. The teachers did a lot, and were interested in helping M make progress at school. M did make some progress, but even with all the good intentions coming from all sides, I could see that M was still struggling.

Over the following several school years (PreK- 1st grade) I started to notice behavioral trends happening, M seemed stressed, anxious, and mildly depressed. I started to look at the small details of her daily life and listen more closely to what she told me and what was being told to me by the school. In doing so I came to realize some very important things. I saw that M was in an invisible developmental crevasse. On one side were the “neurotypical” kids and on the other side of the crevasse were the more visibly obvious kids with special needs. Stuck between the two worlds was my child. And this existence of not clearly belonging to one group or another was really stressing her out.

I can see you might be asking yourself, with all the paperwork in place and all the accommodations made for M, how could I claim that her delays were invisible? Well, this is the interesting thing. Even with all the awareness around M’s diagnoses, there still was not an in depth understanding of these delays by those that surrounded M daily. This, inadvertently, caused M to be placed in a more acute and challenging space than her peers.

Because M is so highly functional and her disabilities subtle, the staff at the school seemed ok to “push” her despite her challenges

There were all these little instances that I could see cumulatively building up to a more significant and overt problem. For example, my daughter, with her vestibular/ visual/ spatial problems, had a really hard time learning how to tie her shoelaces. Not an uncommon problem for many kids and I know what you all are thinking. Just let her wear velcro or slip on shoes for the rest of her life and move on. Don’t torture the poor kid. To assuage you, I will have you know that I had several pairs of shoes for her, largely slip on or velcro or zip, but I did always keep one pair that was lace up. This was to give her exposure and opportunity to practice tying her shoes. So that maybe, with gradual and consistent exposure, she would be able to understand how to tie a bow.

The teachers did not want to foster a possible “learned helplessness”

On the days that she would wear her lace up sneakers, I would let her try to tie them in the morning before we left for school, then I would tighten them, and double or triple knot them so she wouldn’t have to deal with shoe tying at school. Despite my best attempts and intentions, M came home from school with her lace up sneakers undone. I repeatedly got a short lectures from one of M’s teachers telling me that this is a skill she should have mastered by now.  I reminded the teacher that we were working on it, but M has gross motor delays and that it may just take her more time than average. The teacher acquiesced, but this shoe tying issue kept coming up in weird ways.

At some point, the teachers at M’s school stopped helping M tie her shoes if her shoelaces came undone during the school day. I think they saw it as a practice opportunity. Let M experience the discomfort or instability of having untied shoes, and she might be more motivated to solve the problem herself. I can understand that the teachers did not want to foster a possible “learned helplessness” but this seemed a bit misguided. Not all kids come up swimming when thrown in the proverbial deep end. What do you do in those circumstances, let the kid drown?

Her peers were not necessarily able to understand the reason why M was the way she was

I mean, here is my kid, who has gross motor and fine motor coordination issues and the adults she interacts with at school daily are essentially telling her that they are not there to help her and she will just need to “deal with it.” Would they tell a kid in a wheelchair to crawl out of their chair to pick up a pencil that the kid kept dropping? No, of course not, that would seem cruel, yet, because M was so highly functional and her disabilities subtle, the staff at the school seemed ok to “push” her despite her challenges.

We experienced similar treatments in many other aspects of the school day. M would, at times, get into trouble at school for accidentally kicking her classmates under the table because she needed to swing her legs. Contacting something solid gave her brain necessary feedback for her vestibular system to understand where her body was in space. Of course, her peers were not necessarily able to understand the reason why they were getting kicked under the table repeatedly. They were 6 years old at the time. Her peers would protest and “tell on” M for kicking them under the table.

Normally she would have to apologize, and then had to draw a picture showing what had happened when the “offense” was committed followed by a short written apology. Drawing and writing are difficult for M. Do you require a child who already has visual challenges to create a descriptive drawing of an incident? Her drawn and written accounts would sometimes take her so long to finish that she would miss a portion of recess, a time where she got much of the necessary sensory input that enabled her to sit for the remainder of the school day and work.

The teachers were not always connecting the dots between her behaviors and her learning challenges

I spoke with the teacher about what would be a more appropriate consequence for M. We sat down to discuss a better way to address the need to kick while sitting. We started by placing a theraband around the legs of her chair so that she could press her legs against it (it also conveniently prevented her legs from reaching the legs of her peers under the desk). While that solved one problem, it would soon be replaced by another, and another and another.

I realized that M’s school day was filled with incidents like the aforementioned. The teachers were not connecting the dots between her behaviors and her learning challenges despite all their good intentions and willingness to work with our family. It was then that I considered that maybe M was not cut out for public school and perhaps would be better served at a school that specialized in children with learning and behavioral differences. I desperately wanted to make M’s daily life easier on her. Who better to provide a nurturing environment than a school that specialized in kids that don’t fit in the neurotypical classroom?

shutterstock_107087411I took her to get evaluated at a school which specialized in learning differences (I realize how lucky we were that there even was such a school in the city where we lived, clearly this would not be an option for many people in a similar situation as ours). After being in the classroom at the specialized school for the day for evaluation and “try out,” the school administration informed us that they would love to work with M, but out of all the children in the classroom, she was the most highly functional child, which would not serve her best educational interests. Though I appreciated their frankness and honesty, my heart sank. M’s challenges were too mild for the specialized school, and too challenging for the “neurotypical” classroom. Were we ever going to find a good place for her?

School was not the only place where these inadvertent discriminations were made

During this search for M’s educational Shangri-La, school was not the only place where we saw these inadvertent discriminations made. M’s Developmental Pediatrician retired and a new Developmental Pediatrician was assigned. The new Developmental Pediatrician, while looking over the patient files, informed us that he did not want to see M because her condition was not severe enough. He only wanted to take on the patients that were diagnosed with severe Autism Spectrum conditions. While I understand his viewpoint and completely empathize with those families who have children that are diagnosed with severe disabilities, I thought it was just too ironic to be told by a Developmental Pediatrician that he would not be taking on M’s case because she was not disabled enough to meet his requirements.

Ok, so remember a few paragraphs ago when I wrote about how 2 out of the 3 conditions M was diagnosed with were not recognized by the DSM? Well, here is where this comes into play. Some specialist doctors will not take on patients whose diagnoses are not listed in the DSM. This is, in part, due to case loads, and in part due to insurance companies not reimbursing services given to patients whose diagnoses are not listed in the DSM. Being in the “developmental/ behavioral crevasse” costs a lot of money because every therapy you try is most likely not going to be reimbursed by your insurance company. Your costs come out of pocket.

Many parents whose children fall into “the developmental/ behavioral crevasse” choose not to pursue therapies for their children because the incurred costs are so daunting. And though many of the kids that fall into this neither here nor there place, end up finding their own ways of adapting to their challenges and have perfectly satisfying and successful adult lives, some do not.

shutterstock_106800677After witnessing the cumulative effects of daily struggles on my own child, I chose to dig in, incur the costs despite some points of financial hardship and continue to ferret out therapists and teachers that would work with M in a productive manner. For me, it was the only way I could live with myself. The guilt of inaction was too heavy for me to bear. It was already difficult enough to see the problem, identify the problem, and then be told that the Diagnostic and Statistical Manual of Mental Disorders does not recognize the problem, despite the fact that the problem is still there. From observing my own daughter, I can tell you that the problems are very real, and that it makes life quite tricky. But, in going through these experiences with my child, I can see a light at the end of the tunnel.

Through all of this M has witnessed her parents advocating for her, which communicates that no matter what, we are on her side, unconditionally. She sees that people who are close to her (peers, teachers, coaches, doctors) are generally well-intentioned people who may, at times, miss the mark. And while that can be quite frustrating, there is usually a creative solution waiting to be uncovered. Her history of needing to adapt from one type of situation to another has taught M that she can ultimately find her place. Even if she has to be the one to carve it out and define it herself.

 

*Occupational Therapist: a therapist that specializes in exercises that enhance cognitive, gross motor, and fine motor skills that facilitate everyday life activities.

**Developmental Pediatrician: also known as Developmental Behavioral Pediatrician. A DP or DBP is a Pediatrician with advanced training in the physical, emotional, behavioral, and social development of children.

***DSM: Diagnostic and Statistical Manual of Mental Disorders is a manual published by the American Psychiatric Association (APA) to offer a common language and standard criteria for the classification of mental disorders. It is used, or relied upon, by clinicians, researchers, psychiatric drug regulation agencies, health insurance companies, pharmaceutical companies, the legal system, and policy makers.

****Brain Gym: Brain Gym activities refer to the original 26 Brain Gym movements, that recall the movements naturally done during the first years of life when learning to coordinate the eyes, ears, hands, and whole body. The twenty-six activities, along with a program for “learning through movement” were developed by educator and reading specialist Paul E. Dennison and his wife and colleague, Gail E. Dennison who say that the interdependence of movement, cognition, and applied learning is the basis of their work. Clients, teachers, and students have been reporting for over 20 years on the effectiveness of these simple activities.

 

Illustrations by JungHyun Lee

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