When is it Learning and when is it a Crutch?

My priority for my son was to be a part of the community around him.  A child’s social learning is about how to be a friend, how to care for other people, how to be part of a group.  It’s a very complex apprenticeship that we somewhat expect to just happen.  There are  built in learning opportunities like extended family, or school but most parents unconsciously understand their babies and children need social contact so they have play dates, form play groups, enroll their children in nursery schools, sports, and extra curricular activities.  I knew it was important for my son to have as much social contact as possible.

Being around peers enables children to learn and practice the interactive skills they will use as an adult.  They learn to share, to take turns, to respect other people’s property and space and the dynamics of give and take in a relationship.  Skills learned and observations made in the family unit are tested to see if they apply in this new situation.  Who is in charge?  Who makes decisions?  How do friendships form and continue?  Hours and hours of experimentation and testing go in to their exploration of relationships with peers.

A child with a disability is at risk for not having the opportunities to learn the social skills we take for granted.  Physical limitations can make it tough to keep up or join in.  There can be similar problems with limitations in communication, vision, understanding (cognition), emotional development or even just the energy level to keep going with the others.  My son had limitations physically, in communication, and in energy.  He also spent a huge amount of time in therapies.  That might be considered a time limitation.

My vision for my child was that whatever the outcome of therapies was, he would be able to be a happy, productive person in society.  Whether or not he could walk or talk I felt that engaging with other people was the key to a happy satisfying life.  I would have gladly continued to assist him in whatever way he needed me forever, but I knew what independence would feel like and I wanted that feeling of power and autonomy for him.  I understood early on that being in a restrictive environment might be hugely helpful for SOME of his needs but would not take care of ALL of his needs.  The only way to learn to engage and interact in society was to learn people skills and practice them as a child. He needed to be around peers who would become the adults that he would encounter in a community.

So, I started my son in a regular preschool at the same time he started the special school where all his limitations would be accomodated and he would learn computer skills he would need in kindergarten.  Two days a week I would take him to Miss Margie’s class where he became part of the group, made friends, and participated in the pacing and flow of those typical child activities.  He spent one year in a special kindergarten continuing to refine his technology skills but that teacher also merged her class throughout the day with a typical kindergarten class.  Don left the special supportive setting and entered a regular first grade class the next year. He had an “itinerant teacher” who travelled around the district checking on special needs students who were enrolled in regular classes.   Everything went well until we neared the end of second grade.  Don was struggling with reading.  We now suspect that he has damage in his left cortex that affects the centers he needs for reading.  The special teacher was coming in to class to give him one to one assistance but I knew that he did not have the reading skills his peers did to move on to third grade.  I asked Stephanie, the specialist, what was going to happen.

Stephanie Ingnatenko taught me about remediation and compensation.  She explained that when there is a limitation there are two approaches possible.  One is to remediate, to help the person gain the learning that is limited.  The second is to compensate, to find some way for the person to not be so limited by the lack of learning.  The one on one reading help Don was receiving was remediation.  The Anat Baniel Method focuses on remediation.  Most surgeries are remedial.  Brain Fitness software is remedial.  Having Brail books for the blind is compensation.  So are wheelchairs, walkers, crutches, electronic talkers, audio books, etc.  Remediation is focused solely on building the learning that is limited.  Compensation is focused solely on making sure that the limitation does not interfere in other arenas.

Stephanie explained that Don understood the science, history, english and math curriculum perfectly.  He could not do reading assignments and taking notes was a very energy intensive long process.  He would have compensations so those two limitations should not keep him from moving forward.  We weren’t giving up on reading, there would still be remediation with a reading specialist, but Don would move on to third grade with his peers.

The classroom teacher chose a “reading buddy” for Don each week.  It was a very coveted position.  These were NOT always the best readers, but what better motivation for another student than to be the “special” person who got to read aloud to Don?  Wow.  I was so impressed.  In one action Don became part of the group, had his need taken care of, and the other students benefited too.  In later years other students used carbon paper to make him a copy of their notes they were writing, and in college he gets regular emails from someone in the class with their notes.

Some tools combine remediation and compensation when they assist with a limitation but also contribute towards building that same skill.  There are AFOs which are compensating for a limitation in the ability to use the foot and ankle,  but are also designed to give the child an opportunity to continue to learn.  The Kidwalk walker (dynamic stander) has features like the weight shift mechanism which allows the child to shift weight side to side during movement, and the swivel self centering seat which allows the pelvis to turn from side to side during walking.   These features help children gain skills toward walking independently while the Kidwalk provides the ability to be upright and move for those that can’t stand and maintain balance yet.  Augmentative communication devices (talkers) compensate for a child who can’t yet speak, but also allow for language learning because the child has the opportunity to experience communicating and using nouns, verbs, etc to put communicate thoughts.

 Parenting a special needs child does not come with a guide book.  There is no model to follow.  Even if in the past another child grew up with the same limiting condition(s) it does not predict the path or outcome  for your child now.  Learning is based on experience.  Technology changed that opportunity for experience for my son.  New inventions like the cutting edge walkers and AFOs are changing the opportunity for other children.  New ways of working with the brain are changing children’s experieinces.  Being aware of whether remediation or compensation are used can help parents to see the big picture of their child’s experience and help them to make informed decisions.  Parent’s can question, “is this helping my child have more experiences?”, “is it creating more limitations in the future?”, and “is there another solution which will both remediate and compensate?”.

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