Our fight for Andrew's education has taken our family down several roads and not always for the best. There has been a lot of learning along the way and I'm hoping this blog will help others not make our same mistakes.
Andrew was diagnosed with Autism in first grade. At the time we were in a wonderful school district that supported Andrew and our family, worked closely with us for supports, and actively helped Andrew inside and outside of class. They guided us through our first IEP meetings and we worked together to learn new strategies. When our family would bring a new strategy to the school they wholeheartedly embraced our ideas and worked hard to make accommodations. It was a very good time.
On Mother's day 2012, second grade for Andrew, we had a house fire and lost everything. We were renting at the time so scrambled to find a new place to live with the little savings we had. That took us into a new school district. In the beginning, this school also worked well with our initial IEP and worked very well with Andrew, however the IEP began to shrink. Andrew had been meeting his goals at his previous school and they felt he didn't need as many supports. Inexperienced over these types of changes and stressed out over all that was going on, we agreed.
Suddenly, Andrew started acting out and getting in trouble at school. If we had the wits about us we would have known it was due to his lack of supports, but we just didn't make the connection. Why was this happening since his goals were going so well before? It looks obvious in hindsight, but at the moment it was perplexing.
Mistake #1: Andrew wasn't growing out of needing the supports, he was meeting those goals because of those supports. The IEP should never have been reduced.
Then the unthinkable happened only a few months later. My whole department was "re-organized" and I lost my job. At this point, we were still struggling to get back on our feet and I had no choice but to take a job in another area which meant another school district change. This is where our first mistake reared it's ugly head and the value of a good school district really hit home.
When Andrew started his new school, they implemented his last IEP, so the new school put in limited supports. At a time when he would need supports most there was little to help him. This school district was struggling for funds and made that known to us in no uncertain terms. They wouldn't be adding any new supports because they couldn't afford it. Andrew continued to struggle, not only with social issues but now with schoolwork also.
We asked for an IEP meeting but were met with scheduling conflicts and delays. Things continued to get worse. Andrew was being threatened with suspension. He was failing right from the start. We felt helpless with the bureaucracy.
Mistake #2: We didn't insist on a new IEP for a new school. Change is difficult and challenges are different in a new environment. Using an old IEP was like putting on a size 5 shoe when you wear a size 8. It just doesn't fit.
After months of struggle we decided maybe Andrew needed a whole different approach. We found another school that used a Montessori approach and seemed open to our needs. They scheduled an IEP immediately and were friendly and professional. We thought we had found the perfect school!
Andrew continued to struggle. We scheduled more IEPs. We came to more conclusions and more supports. Nothing changed for Andrew. What we came to find out was that the supports were in the IEP, but the supports weren't given as outlined. The para that he needed full time was only part time. When he needed downtime he was sent to the Social Workers personal office to work instead of given heavy work or exercise breaks. He was often kept inside for recess. He got kicked off the school bus. It all flew in the face of what we had agreed in the IEP. What could we do?
We were at our wit's end, Andrew was failing in school, and IEP meetings weren't accomplishing anything positive. If only we had known more about IDEA (Individuals with Disabilities Education Act), we could have gotten a professional advocate to fight on our behalf. At the time we thought our only recourse was to sue the school which we could not afford.
Mistake #3: Being uninformed of our rights. If we had taken time to understand better about the rules outlined in IDEA we would have known how to fight. Other resources we have since learned about is The Arc and Pacer. Both invaluable for helping with rights and services.
The Following Years
After having daily calls from the school for fighting, hitting, throwing, and all different sorts of meltdowns we realized school was seriously harming Andrew. He was anxious and cranky the majority of the time. He had regressed to reading below his grade level and home was a ball of tension. We made the hard decision to have Andy stay home to take care of Andrew and be his learning coach for online school.
This made a world of difference. With the environment controlled with routine and stress free transitions, Andrew thrived. He's been excelling in school and getting straight As along with being promoted to higher grade classes for Math. However, this took a toll on Andy. Without his own outlet and means to contribute to society he began to drink. Depression took hold and he spiraled out of control. Andy finally went to rehab two years ago and is sober today.
Mistake #4: Not getting supports for the whole family. No matter how strong you feel, it's important to have a support network for everyone in the family. It's really hard to do this all alone.
A New Beginning
It's been five years of online schooling and during that time we found out about a charter school in our state that specializes in autism and sensory issues. Their school is set up with those particular needs in mind. They boast a small teacher to student ratio along with lots of social activities for the kids in settings that are autism friendly. We were excited to get Andrew into this school!
We weren't the only ones wanting to get our child into such an awesome environment. Due to the sheer numbers of registrants the school holds a lottery each year for new students. If you don't make the lottery you are put onto a waiting list at the number you were pulled. We've been on the waiting list for three years running. Until this year.
Since the school has been doing so well they raised enough money to open a second location on our side of town. The registration was first come first served and the doors opened up at 7:30 am on a Saturday. I figured people would be camping out and they did. We arrived at 4:30 am and were greeted with a long line. It was heartbreaking to think we might not make it. We had waited so long and desperately wanted Andrew to have this opportunity along with allowing Andy to get back to work. My heart hurt.
In the end we made it. We were second to last for our grade. That joy was bittersweet. Unfortunately, that meant the people behind us didn't make it. One woman began to cry and I had no good words to comfort her, because even being number three on the list one year didn't yield a spot for us.
It shouldn't be like this. It shouldn't be a lottery that children with disabilities get the supports they need for an education. It shouldn't be some families can go to work while others have no choice than to have to stay home to educate their children. It shouldn't be a fight for families to know their children are being taken care of while at school. It also shouldn't come down to how much money you have depends on how good those supports are covered. These are children who deserve the best.
While our family will be having major changes with the start of the new school year and we are all excited for those changes, so many families will not have that opportunity. We need to change this and make inclusion work for all schools and all kids.