State of Confusion

Florida is a horrible state for autism. Yep, it’s true. When we moved here and Bryan was 4 it was insane the amount of calls, research, meetings it took just to figure out where he could attend Pre-k. So why did we move here and why do we stay? These are excellent questions. We moved here for two reasons. One was that Earl had an opportunity to expand his business in a way that was not available in NY. Also, all of our family was here at that time or moved here since that time. When we moved we were just getting started with all of the therapy, etc and trying to get a grasp on Pervasive Developmental Disorder. Jason had growth issues, allergies, etc, and we were going to so many doctors appts for both of them I could no longer sustain my current work pace. I took a year off when we first moved and although for me being a stay at home Mom was a little like Groundhog Day, the boys needed me and we needed them to be ok.

As time went on and we learned how to navigate down here, we learned that once your kid is 3,  services are no longer provided for free (meaning you pay your taxes) unless you have insurance (in those years insurance for OT, speech past a few sessions, was unheard of) or pay for it privately. Hmm, he needs speech at $90/hour plus OT at $90/hr about 3 times per week, and ABA at $90/hr twice a week. You do the math…. We were lucky to have some insurance help and tons of family help. Since I started working my company has been fantastic with support.

Our philosophy has always been to treat Bryan as much like a typical boy as possible. Please don’t confuse this with our denial of the disorder or trying to make him something he is not. The key is to help them function and fit into society. They have no other choice, really.  How do you expect your child to navigate  a restaurant, mall, supermarket if you never take him? How do you expect him to relate to people if he is hidden at home? Not be shallow but the kids also need to dress the part. Your special needs kid needs to look like a typical kid. Just because they don’t whine or ask for the latest trends, if you want them to fit in socially, you have to take this into account too. It may sound silly, but the kid needs every advantage they can get. So,  Bryan goes and does all things, all family functions, etc.

Our family is so accepting of him. There are no real scripts to tell people how to act with him. Geez, half the time we don’t know, but love, that always comes through. Kids know who love them and whose feelings are genuine. Bryan knows that the family loves and cares about him. He loves being with them too.  A few years ago when we went to Disneyworld with my parents and sister, he would put my hand in my mom’s hand and say “all together”. Bryan turned 12 on Saturday. He was well aware that it was his birthday and wanted presents!!! We had a family brunch on Sunday for him. Nothing swanky, just bagels, cake and love. He was very happy and everyone showed him warmth and respect. No one treated him like a baby or like there was anything  different about him. One of the most loving parts of the day was watching the other kids, his cousins, interact with him. My niece and nephews just naturally talk with him and play Wii with him. My older nephew sat with him and worked on one of the Lego sets he got for his birthday. My cousin Ben’s daughter, who does not know him as well as my niece or nephews,  engaged with him by going on the trampoline with him and playing Wii. They are the same age; they connected. They walked up our stairs holding hands. Ahh, so that is why we are here. The love, the acceptance, the support. You cannot make a kid be kind to another kid, even if it’s your family. They have to feel it, get it. And this stems from the parents. Our family encourages their kids to be accepting, to be loving and we appreciate that more than words can express here. The attitude of the other kids, the encouragement, you can’t fake it and trust me, he knows that.

As far as school goes, we do our homework and we find the best available down here. We supplement his schooling with tutoring and therapy. Better school programs might be available elsewhere, but the intangibles, they are here and we are staying. The weather’s great too!!

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4 thoughts on “State of Confusion

  1. Thank God you are staying. I would be heartbroken if you left!

  2. Hi there – I work with your friend Deb and I have two kids with autism – she sent me your link. I am looking forward to skimming your past posts and following along. I’m out here in San Diego. Michelle

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