In the fall of 2006, my daughter Sydney, who has Smith-Magenis syndrome, was about 10 months old, and I was just beginning my long relationship with early intervention. I was sitting in my kitchen with the social worker from the birth to three program and she wanted me to sign papers that would confirm Sydney’s eligibility for preschool services at our local public school. I remember feeling enraged at her request. I told her I had every intention of sending Sydney to the same preschool that my other two boys attended. She tried to gently convince me to at least sign the papers just in case the need came up, but I flat out refused.
A year later, I signed those papers.
In January of 2009, Sydney began a special ed preschool at our local public school. She was in an integrated classroom and received every special service they offered. I let go of my desire for her to go to “regular” school and accepted that she would be receiving special education services for the duration of her academic life.
In the fall of 2013, I was once again confronted with the same situation. I was in a team meeting for Sydney talking about her progress at school. She had been struggling quite a bit and the team was having a very difficult time managing her daily educational and behavioral needs. The situation had been brewing for a while and things were finally coming to a head. It was at that moment when the director alluded to the idea of outplacing Sydney in a special needs school. I was furious. Although on some level I knew that this was probably the right thing to do, I was simply not ready to accept it. Similar to 2006, I flat out refused to discuss that as an option and demanded we try harder to make a mainstream special education program work for Sydney.
We spent the next year working very hard at forcing her to fit in a place where she did not belong. Sydney required so many accommodations to her school day, it was near impossible to meet all of her needs. She required constant one-on-one support, a small classroom environment, a safe place to have a meltdown, tremendous flexibility in her schedule, and more than that, she needed an individualized curriculum that addressed her unique style of learning. Although in most cases public schools can manage these requests, in Sydney’s case it was much harder than it seemed. I could see her program falling apart right before my eyes and as hard as I tried I was unable to fix it. I refused to give up and continued to hold out hope that her current school would individualize her program and accommodate all of her needs.
Unfortunately, the program deteriorated and Sydney stayed in the resource room with an aide all day. She was no longer attempting any mainstream opportunities, and she was consistently missing services due to her unpredictable behaviors. It became painfully clear that public school was too big, too chaotic, and too stressful for Sydney. I knew what was coming and I was not happy.
About two months ago, in another team meeting, the issue of outplacement was again put on the table. This time it was not presented as a choice. The school admitted they could no longer meet her needs and keep her safe in their environment. We would need to begin the process of securing a special needs school for Sydney.
What I needed to find was an environment that accommodated her – a new place that did not require her to change, but rather allowed her to be just herself.
What I realized over these years, is the harder I tried to force the issue, the more stressed and anxious everyone, including Sydney, became and the less successful she was in in these circumstances. The staff was overwhelmed by her unique needs and her behaviors became progressively worse. I knew in my heart if Sydney could just be herself and be accepted for it, she would eventually thrive.
It has taken me years to learn that inclusion is not for everyone, and I should not feel bad or guilty about that notion. I know for most people, a mainstream education for a special needs child is the ultimate goal. I felt the same way.
Back in 2006, it was so important for me to have Sydney attend the same school as her brothers. Now the most important thing is finding the right environment that will meet her needs and can accommodate to her differences.
I am tired of feeling like a failure when it comes to her school experience, and I no longer want to feel defeated by a system that just did not work for her.
Being included feels great, but being accepted for who you are feels even better.
Follow this journey on Strength for Sydney