A note for parents of special children

Children that we advocate for as parents

Another week has ended and my brain is tired from all that I have heard and the help that I have tried to give.  I keep hoping that parents will come to me, sharing their successes working with their child’s school.  While there are a few, the majority are still coming in with anger, confusion, and frustration.  They may have an IEP or 504 Plan, but the needs of their child is still being ignored, sometimes by the entire school, but more often by one of the teachers working with their child.  It may be a child with moderate to severe dysgraphia, who is supposed to have copies of notes and information from the overhead given to them, but told that they can have a copy at their desk that they can copy for themselves.  They are expected to copy the assignments off the board in the short period of time between when the teacher writes it on the board and the bell rings to go to the next class.  The parents have given the teacher information both from the OT that is  working with the child as well as the consultant who found severe processing problems that would require several minutes to copy five lines off another sheet of paper.  Don’t even talk about writing a paper or test essay, which requires the multitasking of

  • developing the idea,
  • holding the idea in his active working memory,
  • while visualizing what it would look like including the correct spelling,
  • activating the hand to begin forming the letters, and
  •  inserting the correct capitalization and punctuation.

We understand that there is only a limited amount of RAM in a computer, which if overwhelmed will either slow significantly or totally crash.  The brain is the same way with a limited amount that the active working memory can do at once before things slip through or collapses all together.

I would like to tell parents that I greatly respect the advocacy they do for their child.  I applaud their continued research into why their child is struggling and attempting to share this knowledge with their child’s teachers.  I encourage them to keep the faith that they are doing the right thing for their child.  I know that they have too many times been made to feel like they are being unreasonable with their requests, even minimal cost ones like a teacher making an extra copy of his notes to provide to the student.

I do understand when schools balk when they are being told that they need to institute expensive, experimental methods, but the majority of accommodations for students are less than $ 25.  There are also times when the parents are correct that the school needs to provide professional development to bring in new methods and curriculum which are research-based, and proven effective, and can be applied to several students each year.  An example would be the young man with Down’ Syndrome who was illiterate at 19 years of age, after the school stopped trying to teach him to read at the end of 2nd grade.  After a year with a MSL (multisensory, structured language-based) reading approach he went from less than kindergarten level to beginning 2nd grade level.  And the mother was only able to afford tutoring once a week, working as best she could with him for the rest of the week.  The school finally got one of their teachers trained so he could receive it in school for the last year that he was eligible for services. While his growth has not been as fast since then, he is still making progress and gaining a love of reading.

So parents, please continue to be your child’s best advocate.  Together we will continue to make change.

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