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Thursday, March 6, 2014

Our Experience with Apraxia

     Aeon Magazine has what for me is a heart-wrenching article on a child suspended for school because he suffered from apraxia and did not conveniently fit into the special education box. I have a son that suffers from both cerebral palsy (CP) and apraxia--and what happened to the child in the article nearly happened to my son. I came across this article last week, and nearly didn't post anything. But I saw that Glenn Reynolds had cited to it this weekend, and so I thought I would share my thoughts.

    Wikipedia defines apraxia as:
... the inability to execute learned purposeful movements,despite having the desire and the physical capacity to perform the movements. Apraxia is an acquired disorder of motor planning, but is not caused by incoordination, sensory loss, or failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series). It is caused by damage to specific areas of the cerebrum.
In our experience, and according to the experts we have consulted with, apraxia is accompanied by or causes a loss of muscle strength--at least in our son's instance where he had it since birth. For instance, our son has had to undergo significant physical therapy not only to try and overcome his apraxia, but also to build his physical strength and stamina. He is still very physically weak in many respects, but the exercises strengthened his core muscles where he is able to walk and sit better than he had previously.

    Our son not only has apraxia as to his gross and fine motor skills, but also as to speech. The NIH describes speech apraxia:
Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.
Our son's speech apraxia was so bad, initially, that he was unable to speak--he did not learn to talk until after he had been receiving speech therapy. But, I will get into that later.

     The Aeon Magazine article was written by Michael Graziano. Graziano describes:
Our son’s movement problem emerged slowly – so slowly that we didn’t notice at first. When he was five, he moved more like a three-year-old. He was happy and chatty, but he had difficulty writing, drawing, cutting, pasting, and sitting straight and still in a chair. Milk tended to spill an awful lot in his vicinity. His kindergarten teacher at his elementary school noted these difficulties, but the school decided he was in the normal range and didn’t require any extra support.

The following year, he started first grade at the same school. In November 2012, we met with the first-grade teacher, who told us that our son’s writing was a useless scribble compared with the other children’s. He was at the bottom of the class. We were taken aback. Poor writing can have an impact on reading and on math. Why hadn’t the teacher told us earlier? During math homework, our son seemed so anxious about the effort of forming each digit that he couldn’t think about the question itself. And yet, apparently, he didn’t qualify for any school occupational therapy to help with his writing.

A worse surprise followed a couple of months later (this is, among other things, a story of escalating shocks). At the start of 2013, my wife requested a meeting with the teacher to follow up on our son’s classroom progress. We were braced for bad news, but we couldn’t have prepared ourselves for what the teacher had to say. She brushed aside our concerns about writing and reading and math, and informed my wife that, for almost a month, since before the holiday break, our son had been ‘touching himself inappropriately’ in class.

The teacher’s description was vague. She seemed extremely uncomfortable talking about the issue. When pressed, she explained that he never put his hands in his pants. He never opened his pants. He never exposed any part of his privates. According to the description, he seemed to be rocking rhythmically in his chair, or rocking when lying on the rug during story time, and the rocking was bumping his groin area.

It happens that my wife and I are both psychologists, and this description of our son’s behaviour worried us a great deal. First, six-year-olds just don’t engage in behaviour with a sexual intent. Secondly, repetitive rocking is a classic hallmark of anxiety in children: the physical motion is self-soothing. It ought to go without saying that any child who engages in strange or extreme repetitive behaviour should get help right away. But the school did not offer help. We were told that it was our responsibility to make our son stop misbehaving.

Very worried, my wife and I got to work. Immediately after that January meeting, we found private therapy for our son. We brought him to weekly occupational therapy for his movement problems and weekly psychotherapy to help him adjust to the stresses of the classroom. The movement therapist found that he had significant muscle weakness and co-ordination difficulties. The psychotherapist diagnosed him with school-specific anxiety. He saw himself as the dummy of the class because he couldn’t even write his own name. When we brought him to school, he would cringe away from the staff and refuse to say hello. The repetitive rocking in the classroom was almost certainly a classic self-soothing strategy triggered by his anxiety about writing. The rocking movements in turn might have been affected by his co‑ordination problems.

While we were busily making arrangements to help our boy, his school embarked on a campaign of its own. Our son used to attend an after-school programme run by the YMCA, where his teachers always spoke highly of him. Without our consent, someone from the school contacted the staff of the YMCA programme to tell them about his classroom difficulties. This person apparently labelled his problem as sexualised behaviour and speculated that his parents might be abusing him. The first we heard about this was when the after-school staff told us about it.

At around the same time, somebody at the school took our son out of class and interrogated him about his family. This person apparently told him that he couldn’t let anyone know about the conversation, and indeed we found out about this second secret rendezvous only when he began to act it out in play. Unsurprisingly, the emotional conflict of being asked questions concerning something that he was, in his words, ‘not supposed to talk about’ caused him a considerable amount of distress.

The fact that the school was pursuing its suspicions in strange and secretive ways raised questions of its own. But we couldn’t help a grain of doubt. Was the school right? Was his problem simply a pattern of willful and highly inappropriate behaviour? It seems significant that nobody outside the school ever reported any of our son’s strange ‘sexual’ misbehaviour. He didn’t do it at home. He was well‑behaved at the after-school programme, at which he was said to be a delight. He had a group piano class every week and never behaved the way the school described. He had play dates with other children and was always his usual sociable, friendly self. His movement therapist and his psychotherapist never saw the misbehaviour. Nobody but the adults at the school ever saw sexually motivated behaviour in our six-year-old boy. We believe the school was looking at a childhood disability and interpreting it in a thoughtless and stigmatising way.

As I said, this is a story of escalating shocks. The next one came on 28 February 2013. The teacher emailed my wife to schedule a one-on-one meeting. At the last moment, I decided to come too, and it was lucky that I did. The meeting turned out to be an ambush.

The school principal came down to the lobby and led us to a room where we found an entire panel facing us: the learning consultant, the teacher, the nurse, the school counsellor. The principal sat us down and told us that our six-year-old son was masturbating in class. This masturbation took the form of abnormal movements as he sat by himself in his chair or on the carpet during story time. Everyone found it disturbing to look at. It was our responsibility to stop him. The principal also informed us that she had called the State of New Jersey Child Protection and Permanency services to report our family for investigation, since she suspected that our son might be the victim of sexual abuse himself.

We sat stunned. We had spent a year asking the school for help for our child and the principal’s very first response was to report us to a state agency for possible child abuse. She hadn’t talked to us first. She hadn’t attempted to gather even the most basic facts about the case – for example, that our son had a movement problem. She didn’t know that he was in private psychotherapy to help him with the stress he felt about going to school. She didn’t know that his repetitive movements in the classroom had been diagnosed as symptoms of acute classroom anxiety, and that it was probably brought on by a writing difficulty that the school was failing to address. She didn’t know any of this.

His teacher, on the other hand, was quite certain that our son didn’t have school anxiety. After all, she explained, she never saw him cry. How could he be anxious?
     Unfortunately, the events in the story didn't surprise me. It was several years until we received a diagnosis as to our son's condition, and the school specialists don't seem to have ever heard about it, or if they did, they didn't know anything about it. Fortunately, we became aware of our son's condition before he entered school.

     Initially we thought our son was "a late bloomer." However, by the time he was two, it was clear that something was wrong. Initially, we were told he might be autistic. However, we were referred to a pediatric neurologist who recognized that our son was not autistic, and later diagnosed our son with apraxia and CP.

     By this time, our son was eligible for an "early intervention" pre-school. The teachers there were wonderful, even though they had their hands full with many students with many different types of disabilities. The biggest concern was that our son could not talk, making it difficult to communicate. The school's speech therapist did not appear to know anything about apraxia. Our son received very little therapy from her, and she mostly tried to push us into a program to use pictures to communicate. That is, our son would point to a photograph or drawing to indicate what he wanted. Initially, he used a simple set of photocopied pictures which he could point to. These were replaced with a board that used different inserts to increase the variety. The ultimate goal was to use hand-held notebook computer-type device which he could use to put together sentences, and the device would say them out loud.

     This is where we began to become frustrated with the school system. We did not want our son dependent on a machine to speak for him. We knew from researching online that speech therapy could help, and we thought the use of the machine would ultimately be far more limiting. But there was still the basic problem of communication until he was able to speak. Fortunately, I happened to spot a program on TV one Saturday morning called "Signing Time" that taught basic American Sign Language (ASL) to children. We learned that the programs were available on DVD, and ordered a few. Our son picked up the signs pretty quickly, and we ended up ordering the whole series. It was a major breakthrough because he was able to begin communicating with us, and it eased his frustrations as well as our own. In addition, his teachers were also already familiar with some of the signs, and it made his pre-school easier.

     After that, our son had to move on from the early intervention program. Because of his use of sign language, the school district had agreed to allow our son to attend a deaf and hearing impaired class in the mornings, but in afternoons he had to attend a regular class. He was supposed to have an aid who knew sign language to assist him in the afternoon. However, either the aid didn't know sign language, or wasn't there, because we learned that our son was being shuffled aside. The teacher didn't want to take the time to deal with a student who couldn't talk. And, it became obvious that his afternoon teacher and the administrators equated his physical and speech problems to being mentally retarded. It also didn't help that the school district couldn't retain teachers for the deaf and hearing impaired class--they went through 3 teachers during the single semester our son was there. On top of that, the school decided to only provide a 1/2 hour of speech therapy a week, which was worse than useless--it wasn't enough to help in any way, and it disrupted his class time.

    Similar to Graziano, though, the issue of whether our son was acting in a "sexually appropriate" way reared its head. Because he lacked coordination and strength, our son could not simply unzip the fly to his pants and use the toilet. He had to undo his pants completely and lower them in order to urinate. The school officials just could not fathom that this was the result of his disability instead of being sexual in nature. Although our son had not yet been officially disciplined in any way, we could see where this was going, and pulled him from the "brick-and-mortar" school, and started him into a home-based, on-line charter school. He was already receiving therapy through private therapists, but he no longer received therapy through the school district. Most importantly, we located both speech and physical therapists that were specifically trained in dealing with apraxia. Because muscle weakness is a major issue with speech apraxia (contrary to the NIH article above), it is important that the speech therapist use exercises to strengthen the tongue and other muscles used in speaking.

     Our son can now speak well enough that we no longer use ASL, although he still has speech difficulties. It has been a long road for him, and a longer one still lies ahead.

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