It is the beginning of the 2011-2012 school year, and for one particular reason I am more anxious than my 11 year old son. You see, Pboy has been formally diagnosed with SPD for approximately 3 years now. My husband and I had absolutely no idea what SPD was, all we knew was that our youngest son was having many problems. First, there was the selective mutism in Grade 1. Then the so-called “behavioral” issues followed in Grade 2. Finally, Pboy received the help he needed when he was hospitalized for 3 weeks during Grade 3.
We were relieved to have some answers, as well as the expert opinions of the team of nurses, psychiatrists, psychologists, etc. from the Children’s Hospital. We already knew about the anxiety, depression, and the learning disabilities, but the Sensory Processing Disorder was a whole new ballgame. When our son finally returned to school after the emotionally painful experience of hospitalization, we were asked by the school personnel if our son was “fixed”.
The school was given a copy of the discharge report, as well as specific recommendations (ie: taking body breaks throughout the day, retreating to a quiet place when things became too noisy or Pboy became agitated, etc.) but the principal balked at all of the “special treatment” my son was to be given. Especially due to the fact that he was out of control most school days; running away, refusing to speak to adults, lashing out at the kids who were teasing and ostracizing him. So the solution was to ignore the special recommendations, and segregate Pboy in a small classroom with a Teacher’s Assistant for the remainder of the school year (this was around April).
Things went completely downhill after that. More running away, more ostracization, more segregation, and finally our son decided to protest all of these unwarranted changes by turning on the teacher’s assistant. That was that, Grade 3 was a complete and total waste of Pboy’s educational life.
Luckily, because things had become so severe (gee, I wonder WHY?) Pboy was put into a Day Treatment program for children with behavioral challenges. The classroom had an excellent teacher to child ratio, educational assistants galore, and the complete and total co-operation of my husband and myself. Pboy did very well. He did so well, in fact, we were informed that as long as his sensory and learning issues were taken into consideration BEFORE being disciplined he did very well. So, our son graduated from an intensive behavioral focused day treatment program in less than 1 year when the actual norm was 2 years or more. We were proud parents!!!
Of course we were not going to subject our child to his old school, so we invested a lot of thought, time and effort into finding another suitable educational institution. We moved our family out of the neighborhood we had called home for 10 years, and moved into a lovely little home that seemed to promise us the world. The school where Pboy would be integrating into was literally right next door, we had met with the vice principal, and had heard many positive comments. But we were wrong…. Oh so wrong!
This time last year was our first general IEP meeting with the school principal, vice principal, and resource teacher. My husband and I were introduced to the wonderful world of the Individual Education Plan. It was fascinating and confusing all at once, but we were confident that this year would be different. Pboy would finally be able to endure one normal year of academic teaching! We met with the principal and the resource teacher at the end of the meeting, and were told how wonderful our son was! Although he spoke very little, he was polite. He was caring. He was eager to learn. We went home that night full of hope, possibilities, and happier than ever! We had finally found “the one”!
That changed the very next day. Pboy decided to run away, and seeing as we lived right next door he came home in the middle of the school day. Needless to say, this incident was a premonition of things to come. There were violent fits at home at the end of the school day, violent incidents at school, more running away, and work refusal. The IEP situation was a nightmare. Our child was labelled a problem child, despite the fact that we had medical documentation pointing to learning disabilities and SPD. The teacher had absolutely NO CLUE was SPD was, so I printed out a 45 paged booklet given to us by Pboy’s doctor. We shared the suggestions that had worked for us at home, and the suggestions of our Occupational Therapist. We arranged several school meeting throughout the year: meetings with Pboy’s doctors, counselors, and school officials. We were blamed, questioned and interrogated throughout the entire process. Then, the principal decided that the information they wanted on the IEP would be the only information that would be shared. The principal now was trying to convince everybody that Pboy should be designated as “behavioral”, and disregarded the LD and SPD diagnoses.
Needless to say, we ended engaging a paid professional advocate to navigate the murky waters of school board policies. Our advocate has turned out to be an essential asset because she specializes in SPD, and helped me to see the difficulties Pboy faces each and every day.
Fast forward to the present. We have just returned home from another general IEP meeting. This time, no comments with regards to how polite our son is, how caring, how studious. Instead, plenty of apprehension, anger and fear. Pboy is in Grade 6 now. We are continuing to educate and inform the school, our friends, and anyone else who will listen about SPD. We will not stop, nor will we give in to labeling Pboy with a useless term that does not apply. We will continue to fight the good fight.
And the tired journey has long seen its beginning, but is too far from reaching the end…