It seems you can’t go a week, sometimes a few days without hearing a news story about Autism. It may be a heartwarming story of a child or family overcoming the odds and achieving a milestone. It might be hearing about the results of a mom overcoming a fight with the school system to get her child the help he or she needs. However, most of the time we are watching from the distance, feeling empathy or sometimes even pity for what parents of children with special needs go through every day.
Unless you are directly involved with a child with Autism, in the many capacities out there (teacher, parent, aide, friend, sibling, to name a few) it can be difficult for people to really understand what you go through. Even cherished friends, while sympathetic and ready to lend an ear, have a hard time truly understanding it. Sure, it can be tough sometimes to read about the normalcy that friend’s children experience. I’m not really jealous or envious, but it’s more of a “Wow, I can’t imagine life being that way”. I see their children getting well deserved scholarships, touring wonderful colleges and seeing their futures open wide and I am truly happy for them, but I do wish sometimes…
I think the reason people don’t understand Autism and the implications of parenting with challenges is a multi-faceted issue. Some people don’t want to offend or ask the wrong questions or make an assumption. We are bombarded with SO much media about Autism; it’s hard to figure out all the angles. Autism in itself is a “spectrum disorder”. While some parents will never hear their children speak and are faced with caring for them their whole lives and planning extensive care plans in their wills, other parents have a completely different experience with children on the higher functioning end of the spectrum.
One thing that I truly believe that we need to do is stop focusing on just one disorder. Just like there are many different types of people, there are lots of different disabilities. Our society expected everyone overnight to accept people of all manner of disability into schools for example. What has happened is, in some cases, schools are doing their best to provide integration and proper accommodations. In the worst cases, bullying is rampant and funding isn’t available, so children are being left behind. I think the answer for all these conundrums is not just awareness, but funding and training. We need to look at our children with challenges and realize that they are here to stay. They will no longer be herded into underfunded institutions and shamed into obscurity. These beautiful children will be here to stay and they should! They need the proper school setting to ensure the success they can achieve, not just cookie cutter accommodations that look great on paper. We need training for our educators and support staff. Sure, it’s easy to just write all this down but I have been on the front lines of advocacy in the legislature. Our elected officials are not always on board with the funding, training and education requirements. I’ve spoken to them and they say the schools are doing just fine. There are some of our elected officials on the front lines of advocacy, but they are hard to be heard over the din of “where is the money going to come from”.
My daughter failed fourth grade. They passed her to fifth. I was told to my face that they are aware of that. They told me, and I quote, that “holding children back has proven to cause bullying later on”. Well…..she’s being bullied now because she doesn’t understand anything you’re teaching her now because SHE FAILED. She didn’t grasp the information taught last year, so what makes the school think that she will get everything this year? The failures in the system for our children are staggering and you don’t hear about them because parents are exhausted trying to fight for their children’s rights. They’re spending their free time researching and trying to get answers. They are going up against school systems that care more about funding and what they look like on paper.
So, all I can say is, children with Autism and other disabilities/challenges are all around you. I am just one parent out there trying to understand why we are failing our kids. There are some pretty wonderful educators out there who really want to see children succeed. My daughter has encountered several of them. One thing is that I will never stop giving up or trying to get what my children need. I just hope that one day, people will really understand what we, as parents of special needs kids, go through.