I’m just a mom sharing stories… and this is our latest one.
Any parent experiences some anxiety sending thier children off for that first day of kindergarten. There might be tears involved… on both the child and parent’s parts. Your little baby has grown up so fast.. and maybe they were in preschool, or maybe they have been at home – but either way, they will now be with a big group of kids, under the care of people you may hardly know. You worry and hope they will eat their lunch, that nobody will pick on them, that the teacher will be nurturing, that school will be a good experience.
For a parent with a child with arthritis, there are added concerns. What if my child is flaring? What if she can’t walk? Will the teacher make sure not to force her to sit criss-cross applesauce on the ground? What if other kids come to school sick? (Because mine is in immuno-suppressive drugs….) What if she can’t participate in PE? Will they let her sit out or give her something else to do? What if school somehow becomes dreaded – because of kids making fun, because of fatigue, because of feeling different or left out?
For the six years that my daughter was in elementary school, we were blessed by a small, understanding teaching staff and administration. Every year, we sat down at the beginning of the year with the teacher, nurse, counselor and principal and had a 504 plan meeting. I never had to ask twice for an accommodation. They were so supportive, that every year many of the teachers joined our Arthritis Walk team. And yet they did this, somehow, without branding my daughter in a way that called out her separation from the pack. My daughter had a great experience.
Now, the time has come to move to middle school. Instead of one teacher, there are eight. Instead of 400 students, there are 1300. She was scheduled for PE and Dance. I’ve been so complacent with our easy elementary experience, that I have to remind myself that not everybody will be so flexible – that accommodations do not come automatically. I am reminded of the many stories I have heard from parents over the years – of frustrations so great and difficult to overcome, that children were moved to a different school, different districts, or home-schooled. I am reminded that sometimes a letter from a Social Worker is needed in addition to those from the doctor… and that, sometimes, even a letter from a lawyer is called for. Ultimately, at the end of the day – I am the advocate for my child. I will be at the office window as many times as necessary so that my child has fair and equal access, given her condition.
We have a 504 plan meeting scheduled for next week… and I have been holding my breath for these first few days of school. It feels like those first anxious days of kindergarten all over again! And though I am hoping for the best…..the fact that after six days of school, my daughter still doesn’t have a working locker – has me pulling out my gloves and preparing for the worst.