Wednesday, March 12, 2014
The Autism Connection....why I am here.
Autism. The numbers get crazier everyday. 1 in 88 boys are diagnosed with it, 1 in 13 is the new number I heard today, here my state of Missouri. These are the numbers we know. This does not include the children that should be diagnosed but are unable to be because of lack of knowledge or road blocks in the system that have kept them from getting the help they need. This does not include those who need help but can't because families are in denial. The questions surrounding autism, are not always, "What is it?" Trailblazers and the sheer volume of our young society getting this diagnosis have brought great awareness to this disorder. Most of our population around the globe have at least heard of it and most of us know it firsthand. This isn't something that can be hidden anymore. But once you know it or suspect it, what do you do? Early intervention is key to dealing with this disorder, and I say disorder not disability because I have seen some amazingly able beings that happen to be autistic. My son's abilities frequently blow my mind, but the every day things he can't do but should be able to do for his age, are heartbreaking. I was fortunate enough to attend a meeting today to help the disabled in my area. After the meeting, a few of us stayed to go into depth about Autism. The questioned was posed. " How do we educate our community on how to navigate the special education system to help our kids, without alienating the school district and making it impossible for others who follow us?" This... Is no small question. Though the school systems sometimes are dreadful and we hear horror stories on the news and even from other mothers whose children have experienced horrific events through their school districts, in general the people working in special education are in it not for money, they are in it to make a difference. They are there because they understand it, and most of them have family members who are effected with a disability. Their limitations come through funding, and the services are only as good as the written individualized education plan ( IEP) . If you as a parent can't or don't get a good IEP in place, then everyone involved, not just your kid is at a disadvantage. Therapists and teachers follow the IEP, and though most do go above and beyond, they still have to follow what is written. That is your plan for your child, it is also the unit by which progress is measured through the school district. Since I moved back in July for personal reasons, I have been in conversation with many mothers all who have a similar story. There is an Autism connection. Most of them suspect and know in their hearts, but have hit road blocks with the system and don't know what to do for their kids. I decided, there is something I can do. I decided to write this blog. On it, I will start with basic things like stories of how I navigated the system with my little boy and how I'm still navigating. I'm planning on interviewing different people and posting those interviews so you, as a viewer can see what has worked with their families. Hopefully, even interviews with therapists. I'm going to tackle everything from sensory activities to do at home with your child to what to do when the evaluations come back as "OK" when you know NOTHING is "OK". This blog will morph frequently, and in no way is it intended to tell you how to live your life with your child with Autism, but it is here to share stories of what has worked with my family and with others and you can take that information and apply it as you feel best. Autism can make everyone, those who are diagnosed and those who are effected by that diagnosis, feel like they are all alone. The more people I meet, the more I break away from silence and speak candidly, the more I learn... We ALL have an "Autism Connection".