first day of school can bring lots of feelings.........

Well, first day of 7th grade, first day of 1st grade, and first day of a new schedule once again for Ty. Lots of emotions this day- very excited for all my kids for all different reasons. But my first baby is off to Jr. High- don't know how that happened so quickly. My 3rd baby is off to first grade- at school now all day, eating lunch at school, just not having her around so much- which is good and bad of course. But she's my baby- and has moved into a new level of school, and development and she is nice to have around. But proud of her as well- of course. And this day also brings lots of emotions I have for Ty. If he was following the original trajectory of his education plan- he would be entering 4th grade. But we opted for him to do a second year of kindergarten, for so many reasons. So that would then make him a 3rd grader this school year. But as this school year begins for so many- he doesn't start school. Just like last year, he doesn't attend school at this point. Why many wonder and just ask? Well, we did preschool with him- not successfully. He went into Kindergarten, again, unsuccessfully (this was all before the Autism Diagnosis- all his delays were simply "blamed" on his medical issues"). Then we gave another try at Kindergarten, and that attempt lasted 3 months before we had to pull him out- then we continued that school year through an independent study program through our local school district. Basically it's homeschooling- but we have the guidance of a teacher and we would meet with her once a week for an hour. Seems pretty simple, I didn't have to create lesson plans (although he was only in Kindergarten). But this too ended not well. During this period of 6mo was when he was Dx with Autism and a Mood Disorder-NOS. So we were still in the gathering of information period for him. So then it was once again a summer break- but no services had started yet. He qualified with out local Regional center and we were on the right track- but wow everything takes forever to process, to get appointments, to continue to collect and gather information for what his needs are. We had our local Area Board 3 representatives on board for support for his IEP. As school district continued to fight us on providing him with services and proper supports for his individual needs. Literally to the point that they had said Autism is not interfering with his ability to learn- WHAT!!!!! Are you kidding me??? Here we go again- now it's not fighting the medical establishment to get the proper care for him- now it's the school system. And what a system it has been for him. Just because these are the services you offer (and nothing else) doesn't mean that's the services that best support my son in an educational environment. Period! Our district is a full inclusion district- which is wonderful to have that as an option for those children who will thrive and do well with inclusion. Problem is my son can't handle the inclusion. If he can't handle going out in the community to do "fun" things, if he can't handle going to friends or family's house for a fun gathering, if he can't handle eating at our family dinner table, if he can't handle simply walking around the block without behaviors- well how on earth is he going to handle a classroom environment of 30 kids, where it's supposed to be a stimulating environment to learn, to grow, to socialize, to thrive. He can't even sit in a chair without almost falling out- he can't look at others when they are eating- it's as he say's it "so disgusting"... his sensory is off the charts, his trying to compose himself, to not fall out of his chair, to try to follow instructions when he doesn't understand them- so he literally just 'COPIES' his classmates aka imitate. Which is amazing, yes, but ultimately that kind of stress, that kind of overload to his system, that kind of constant disorganization, from noises, to lights, to smells, to trying to understand and socialize, to following rules, to trying to tune out distractions, literally just trying to navigate this giant classroom, filled with kids, and things all around. Until you have ever experienced a sensory overload to the point of meltdown- I don't think most people can even comprehend what the world is like for some of these kids. And to them- all at once the world begins to collapse around them and it's like suffocating- and nothing is stopping it- I myself have had sensory overload meltdowns, even as an adult. I definitely have major sensory issues. A lot of people do, and it's how we either learn to cope that can help some of us be at least somewhat successful. Also, I am an avoider- just simply don't put myself in certain situations- because I know I'm not able to properly handle it- and it really is stressful. And from my little bit of experience with this growing up, I remember lots of things that "overwhelmed" me- and the physical stress it caused. I was always that kid to throw up due to either excitedness, or anxiety. I always got car sickness, motion sickness even on the playground (damn those tire swings). But what I experienced is still nothing compared to what my son must go through at every waking moment, at every single minute of every single day of his life. If you just stop for a minute- and where ever you are pay attention to the sounds, the smells, the tiniest of noises, the feeling of your clothing, having someone "make you eat dog poop", and people telling you to do this or don't do that, or go there- and trying to put all these sensory messages in there proper place in the brain to then have the proper response.... well it just isn't going to happen! All the messages are all jumbled up, and confusing, and he can't understand someone's direction and no way is he going to eat 'poop' (because to him that's what a lot of foods look and smell like), and every minute of every day for him is "ahhhhhhhhh" get me out of here- So, maybe this will help some understand and look through a different lens of the world for a child who not only has Autism, and Sensory Processing Disorder, and a Mood Disorder, and major medical problems that cause him quite a bit of pain, regularly, anxiety, PTSD, and this is his world. And he couldn't at this point deal with this intimate world of his own, and participate in the outside world where he can relax, enjoy, develop, grow, and learn. But in our closed bubble world.... WOW - he eats food, so he's physically growing, he's wanting to learn- he's engaging, he reads, he cooks, he participates (albeit minimally compared to a kid his own age), but it's what he can do- he smiles, he's happy, he's got a beautiful kind spirit that shines for the most part- until of course that bubble has leaks. But every day he's trying, every day we're trying to help him, everyday we just take a moment by moment- and over time you realize the progress that is being made- is tiny little baby steps. Rather then major regression to the point that maybe hospitalization would be necessary. That's what it came down to the last school attempt. Only a first grader- only was in school for 3 1 /2 months- but that was the decision- it's either we take him out of school or he'll have to be hospitalized at only age 7 1/2. Wasn't a tough decision. We were done fighting school, we were done doing it everyone else's way- sorry no one understands my son and the extent of his complexities, but he's our son and we know him best- and right now- from that day forward we had a lot of very hard work to do- to literally almost have to tame a wild animal. I hate using that analogy- but that's how things were. If he wasn't asleep (which was so hard for him- he was literally running around like a crazed manic, harming himself, harming others, destroying property constantly, running away, not eating, not sleeping - what kind of life is this for a child. Because this is the alternative for him. It's either the bubble- or so much chaos and self destruction. So as today is a joyful day for many- including me, my girls are excited- it's also a reminder that my son, age 9, is home with me and his behaviorist- working on very basic skills- coping, effective communication, independence, transitions, some very basic basic basic skills that most develop naturally- but not for him. And not early enough was his intervention- ever wonder why everyone say's early intervention. Well, prime example- because when a child only communicates like a 2 year old with hitting, tantruming, and other very ineffective ways to express their needs, wants, etc.... well you get a 9 year old who is bigger and stronger who still only communicates like a 2 year old. But that's hard, and now even dangerous at times. But interventions are in place- and almost 30 hours a week we have professionals- helping us, helping our family, and continuing to slowly but surely make tiny baby steps of progress with Ty. But as I"ve said, it's a moment by moment, day by day, and you can't teach someone 'anything' if they are literally never calm enough to stay out of the brainstem fight or flight response.... and that's what our bubble brings to him- for most of the time- so that these skills can be taught to him. And what the future holds, no one knows- but he's our son, we love him, and we will NEVER give up on him- so strange feelings today- but couldn't be prouder of all my kids today-This is a family effort- and our family is strong! And today we smile.