The Light at the End of the Tunnel is Not an Oncoming Train!

I haven't posted in a while because I thought this blog had, more or less, run its course. My son was accepted at a school that instead of forcing paper and policies down our throats, was interested in working with him on the ground level. Before school began, the Assistant Principal showed him around and told him how to get through the halls, which stairs to take, etc. His Guidance Counselor emailed teachers to let them know he had an IEP and Behavior Plan in place, but that the parents were more than happy to work things out without it. The first day of school he made two new friends and became reacquainted with an old friend (By the way, this was HUGE). Several days into the first week, he started having anxiety attacks because he could not organize his locker and make it to class on time when he did go to his locker. I called the guidance counselor to let her know, and THAT afternoon, she had talked with Connor and his teachers and come up with a plan. We didn't need to call a new IEP meeting. All it took was one very amicable phone call and Connor got out of the car this morning without a meltdown. This was a beautiful thing! This is how parent-school interactions should be!

Now, I still read and hear stories how schools are failing other students diagnosed with Autism. Schools are still ignoring behavioral needs, especially when the children are so intellectually inclined, or do not communicate effectively. I've seen teachers leave autistic kids in the special ed rooms doing who knows what while they discuss their personal lives. They are doing these kids a dis-service. These kids are so capable and they understand so much more than we give them credit for, because we are so focused on the meltdowns or teaching them to use their words, or helping siblings understand and teaching them to not be embarrassed of their brother or sister.

Schools are still writing bad IEP's because they do not want to pay for services, or take the time to actually customize a child's IEP. They don't offer you the Behavioral Intervention Plan because it might make more work for them. ALL children are entitled to a "free and appropriate education," not just the ones who fit into the school's pretty little box. I tell my "normal" kids to be leaders not followers, so they don't fit the mold either. I'm proud of that. ALL of my kids are "weird." I wouldn't have it any other way!

My point is, the schools are generally not looking out for our kids, they are looking out for their institution. IEP's force them to look out for that one student. Don't trust what they tell you is true if your gut tells you it is not. I've had district-level educators flat-out lie to my face in the IEP meetings. You have to get pushy and fight, and become that parent you always whispered about and stayed ten feet away from because you just aren't sure when they are going to snap. You have to rally and research and find those organizations that WILL help you. I've said it many times, and I will say it many more: Get an advocate! They are out there. Many are free, some are not. Read your parent' handbooks that the school gives you and the IDEA procedural safeguards and use that information that the schools give you to teach them to take care of your child. Cry. Scream. Mutter bad words under your breath so the kids don't hear you. Then do more research. Call advocacy groups or Autism Societies or local hospitals--Somebody will know someone else that will eventually be able to hook you up with help. I never thought I needed an advocate until last year. After seeing how they help, I wish I'd had one since Day One.

So, stop reading my rant already and start making calls. Fire up your computer or tablet or smartphone and look up autism or disability advocates. Tell your school in writing you want a behavioral intervention plan. Your child IS more than a test score. Fight now so your kids don't have to! Fight so that your child can have a school like my son now has, that is willing to work WITH parents and not against us. Good luck! I believe in you!

A Successful Resolution

I am happy to say we have reached what appears to be an amicable solution to our dilemma! (We were not hopeful) I am told that where we live, successful outcomes are an anomaly. Due to the confidentiality agreement, I can not go into details. All I can say is that everything we wanted was addressed successfully...except for a certain person who wants to charge me 35 cents per page of my son's records. It seems a bit high to us, but that is a small skirmish compared to everything else we have been working on.

That is not to say that this has not been a battle. I've had doubts that I could continue, I had lost faith in an otherwise fantastic school system, and I have moved all of my kids out of their current school in order to get them away from an administration that touted a "Zero Tolerance Bullying Policy" while effectively bullying my son and my family in the process. My husband and I have argued about how to proceed, whether we should proceed, and if we could afford to proceed if it became necessary to go to court. We have been fighting meltdowns every morning in getting our son to school and his sisters have been edgy waiting for the next one to erupt. I have run the gamut of emotions dealing with this drama. We have won this battle, but there is still a war going on.

When we told our son that this drama was finished, I could see him relax. He is now willing not only to go to school, but he gets on the bus without argument. At recess he has started playing soccer with some of the other boys who have willingly and patiently taught him. (This is huge! He approached them and asked if he could play!)

I am not stopping this fight, however. Our struggles were much milder than many others I have heard, but that does not make it okay and that does not mean there won't be another gifted Aspie struggling to make it through school. I am going to become an advocate. My advocates have been fantastic. They supported our position and were great cheerleaders. Just knowing we had someone who understood and had been through it and were there for us really made things easier. I want to do that for other families too.

The biggest lessons I have learned from this are to get an advocate before you think you need one, learn everything you can about how the IEP works in your area, and save every last piece of paperwork they give you. Know your rights and do not back down! Your child's future depends on it!

I am ending this blog here because things are slowing down and I have less to say in big blocks. I really thought this fight would last a lot longer, although I am not complaining that it is over. Any further news will be on my Facebook Page: Aspie Families. Feel free to like the page, share it, and join in the discussion. It's still new, but I keep up with it a little better. Feel free to share this blog as well, as I hope it helps others who feel hopeless where their children's education is concerned. There is hope, and success is possible, I promise!

The Cultural Evolution of Aspergers

Today I started reading blogs and posts of Autism and Aspergers groups I follow, and a few of them got me to thinking. One said Aspergers is somewhere between Autism and Normal. The other asked, "What do you think of the term 'Aspie' to describe those individuals diagnosed with Asprgers?" Curious, I asked my Aspie why he prefers that term. His response was that Aspergers Syndrome or Autism Spectrum Disorder makes him feel like there is something wrong with him. Aspie is just who he is and makes him feel unique.

Aspie is who he is. So I wonder if this is not a disorder, but more of an evolution of human culture. If there is ever a majority of people on the Spectrum, then how would the rest of us define "normal" or "neuro-typical"? We would be the "weird" ones, the "freaks." So maybe society needs a new perspective.

Is someone "weird" just because they don't understand your language? When I worked at a major theme park in Orlando, Florida, I had the unique experience of working with people from all over the world; and while our languages were structured differently and the purpose of words varied, we still found ways to communicate. Sometimes, my Aspie will say things that are well-meaning, but can hurt his sisters' or peers' feelings. That of course, works both ways because he doesn't always interpret our language appropriately.

And even when we did speak the same language, different words had very different meanings. A fanny pack in the USA is not the same thing as in the UK. Don't test this one. Likewise my Aspie still says "playdate" instead of "hangout." To him, they are virtually the same. However, one will get him dirty looks from his peers.

A well-meaning gesture of "ok" or "peace" or asking for a "party of two" to fill a busy ride could send a very opposite message to people from Brazil or Australians and Europeans. And just like you cannot tell just by looking that someone might be an Aspie, you can't always tell just by a cursory glance which country others are from.

When I was in second-grade a few years ago (yes a few, don't argue!)my teacher gave me the opportunity to help a new student from Japan. Her name was Maki. My first impression was that she smelled different, but that was neither here nor there. Her lunches were different, her utensils were different, her clothes were different, too. It didn't matter. We became friends. I helped her with American customs and words and she taught me Japanese customs and words in return. Of course, I also remember a Michael who got me in trouble for teaching me some American and much less appropriate words. I preferred Maki's cultural education, and even now, I remember the impression she left on me.

People from the Aspie culture tend to use different coping mechanisms than the Neuro-typical culture and because they are different, we deem them as freakish and weird, rather than Aspergian. Often they speak a different dialect of the same language, making us understanding them and them understanding us take a few seconds longer and maybe even a little more effort and patience. They don't seek out attention, but that doesn't mean they won't accept it. They are not usually skilled at making friends, but that doesn't mean they don't want them and won't be good friends in return. Their gestures might seem foreign, but to them their movements are perfectly natural and acceptable. While they may seem very different, they do have a lot to teach us. Don't believe me? Ever heard of Sir Isaac Newton? Thomas Jefferson? Jim Henson? Adam Young of Owl City? Albert Einstein? Beethoven? Jane Austen? I could go on. All of them either had, have, or have been speculated to have had Aspergers.

To think of Aspergers as a disorder seems, to me, to be a misnomer. If we "normal" people were more accepting and willing to learn and embrace, maybe those with Asperger's wouldn't feel like outsiders. And, just maybe, we would see the world a little more clearly, too.