Sensory "Issues"

Sensory Integration dysfunction (or disorder. Also called by a term that does NOT result in confusion about SIDS for Sudden Infant Death Syndrome, but which escapes me right now) seems to be gaining recognition as a factor in development and learning. Our little girl has been identified as a "sensory kid" for four out of her six years. I've noticed several moms out there in blogland who also comment on their children's sensory issues.

Do you ever look back on your childhood classmates and wonder if this one or that one was affected by a fine-tuning issue of this nature? When I was in school, there was no integration of children with noticeable differences, and there really was no understanding at all about Learning Disabilities. I remember Bryan Mertz; obviously, hyperactivity existed. I still feel sorry for that kid. I'm sure he could have learned better if he had just been allowed to move around without punishment.

Most teachers in my building are increasingly aware of strategies for helping these kids adjust. Sometimes a child will have what's called a "sensory diet" to deal with their particular package. It's still not so well-known in the larger community, and I have even been in the position, however, of TEACHING THE BUILDING'S OCCUPATIONAL THERAPIST about it. And Sensory Integration Disorder is not recognized as a Learning Disability.

So.

Dear Moms,
Please know that I am a classroom teacher who went through my own training before integration was a typical model. Recognize, also, that the most experienced teachers probably started their careers without a lot of training in learning styles, developmental differences, learning disabilities and differentiation of skills and content.

Also know that I am the tired, scared and cranky mother of a "highly gifted" adolescent with a mixed bag of typical affective needs, and a first-grader with a brain malformation, verbal apraxia, sensory integration disorder and an IEP as long as your arm.

Speaking from experiences on both sides of the desk:

• You will often be in the position of knowing more about education than your child's classroom teacher.
  
• You will ALWAYS be in the position of knowing more about your child than your child's teacher.
  
• Every year, you will have to plan on educating the new team. It will be infuriating, exhausting and confounding, but you must do it with hope, patience and trust.
  
• You may sometimes be in the position of having to research a set of behaviors, diagnose your child, and get a therapist to agree and put it in writing.
  
• You will look for private therapists to supplement the limited therapy contact your child receives in school.
  
• You will hope for someone who can write making your child's needs look as bleak as possible, in order to continue to qualify for government services and for the Individual Education Plan,
  
• but who can also privately reassure you that progress is spectacular and your child's future is assured as a productive and happy member of society.

I suggest that you:

• Show up to the IEP meetings as though YOU are the one who arranged them. Insist on having the full team there. Bring donuts. I am not kidding.
• Run the meeting. Be diplomatic, unassuming and subtle, but be in charge. Be the one to set the pace, transition to new topics, deliberate over accommodations and ask each member of the team for their opinion.
  
• Model love and affection for your child in front of her teachers, aides, classmates and building personnel. Let them know that her behaviors have a source, that you value their patience, and that you trust them to maintain their perspective as professionals, as adults, and as members of a service team.
  

The best thing we did was spend months visiting kindergartens. We narrowed it down to two, and spent a full day between the final two. At the school we finally chose, the principal spent two hours talking to us- after we showed up unannounced! (The principal of the other didn't see the opportunity to take time with us.) We based our decision ON THE PRINCIPAL. This worked for us. It may not work for everyone.

I don't pretend to have all the answers, and believe me, I have days when I despair. We have found a great situation. We hope it lasts. I hope that you mommies who have bleak days will persevere. We will all educate our own communities bit by bit.

Sincerely,
A Dandy Walker mom