So the sun came up once again. Wind is blowing (which should make for an interesting sensory day for both me and Ty). For me personally, I hate the wind. That is one sensory thing that gets to me and I get cranky and irritable if I'm out in it too long. It literally causes chaos in my head. I can only imagine what it does to Ty who has sensory issues like no other and yells at people for chewing food. Which BTW they are only chewing normal, not in some obnoxious way. He's just so incredibly sensitive to sound. Should be interesting.
But as of this day (I think my first grader said day 26) of the school year has passed. I'm left to wonder what will the rest of this school year be like. Will I be able to take Sarah, my last child who is already in first grade, to school to enjoy the ritual of her classrooms morning routine? What about picking her up after school and watching her gleefully skip out of the classroom and so excited to tell me about her day? These are moments that I do miss. These are moments that make what our reality really is- harder. We don't have crazy ambitious ideas of what we would like to do. I just want to be able to take my youngest to and from school. Sure I can start doing that again- but at what cost to Ty? I can't leave him home unattended. Some days I wish he was able to just stay home by himself. But that would be a huge mistake. It's like leaving a toddler home alone. And then I wonder, will I ever be able to leave him unattended for a period of time? What about when he's 15? 18?
I try to not get ahead of myself. I tell myself to get back into the moment. But in reality, who doesn't think about their kids and their futures? Ty does tell me he is going to go to College to play baseball, basketball, and football. (He's ambitious himself!) I always tell him he just has to work real hard and he can do anything! But can he? He has to work so hard just to exist everyday. Things that so many others take for granted. What about his cecostomy button? How will he manage this as he gets older? Do kids with these kinds of struggles developmentally, emotionally, socially, and medically ever mature naturally to a functioning level that allows them to be productive, experience life, have a job, live on their own, get from A to B without assistance? I know I"m getting way ahead of myself. Right now, I have a nine year old boy who cannot be left unattended. Needs constant supervision. A nine year old boy who is so smart, so talented, but rarely can access his true gifts.
We get a lot of feedback (of course usually unsolicited) about Ty and school. What are we doing for his education? How does he get an education when he doesn't (I say can't) attend school, and from their perspective we don't do much as far as education in a more traditional way. He gets schooling- if schooling is considered learning of any kind. He's not a traditional 9 year old boy, so how can we possibly expect him to be learning at a typical 9 year old stage? Doesn't happen. But he is learning every minute of every single day. He's learning how to cope with emotions that otherwise get the best of him and the only way he knows how to handle them is through anger and lashing out. He is learning how to communicate effectively to express when something bothers him, when he needs something, when he wants something but can't have it. This is called functional communication: words are words- but if they don't serve a purpose to express our needs and wants- what could happen? Think of a baby or toddler who knows what they want or need, but cannot communicate it to you. What do they do- cry, throw a fit- get your attention the only way they so far have learned. This is Ty. And this is one area that he is so low on- around a 3 1/2 year old, maybe. He literally thinks everyone can read his mind and we should already know what he wants, needs, or what is bothering him. And if we don't- watch out he'll lash out at you. This is what he is learning to do everyday. Do they teach this in a formal education setting? I didn't think so either. But believe it or not- my kid knows everything there is to know about dogs. Dog breeds, their personalities, the care they need, how to train them, how to properly respond to them, all things dog we say! It's quite amazing. When something interests him- watch out- he goes full force. He's also like that with sports. He loves to learn about sports, popular sport figures, team statistics, team schedules, whose playing and when. This interests him. He has also had a love of Dinosaurs (what kid hasn't). But my kid still does it differently. By age 4 he knew all things Dinosaurs. He knows all things construction truck and farm equipment because when he was 5 and 6, this was his passion. Is it helpful information as far as putting it to use in the way our society thinks is appropriate? Maybe, maybe not, but what it demonstrates is his ability when he has a passion for something to learn about it. And he learns about it in a way that just envelopes him- it becomes his world. It becomes all consuming really, but if we learn with him and let him teach us, we can actually engage with him. He wants to share his knowledge.
p>Now when you talk with him- it's not a two way conversation. He enjoys talking at you- like a professor giving a lecture. And please do not interrupt and ask questions until he is ready for you to ask a question. But he gets passionate. He gets engrossed with wanting to tell you all about what he knows about this particular subject. And everyday when our behaviorist are here, he is learning how to try to have a two way conversation. Even just ask the other person one question and let them answer. These things do not come naturally to him at all, but it's important for him to learn and basically fake it so that people will want to talk to him. Right now, socially it's hard because he doesn't want to have a conversation with peers- he wants to tell them all he knows about a subject. A typical peer response is, okay this kid is talking a lot at me and I'm just gonna walk away. It's hard for adults too to go along with this lecture, imagine for a little kid to pretend to be engaged when it's all a one sided conversation. It's just not natural for most of us. Especially because he'll throw a bone your way in the middle of his conversation with you, where you think he's wanting your opinion or idea, or knowledge on something because he asked. Well, wrong. Do not answer him- that interrupts his train of thought and gets him angry and frustrated. It's like he's learned how to try to make it a two way, but in reality he doesn't want to hear anything from you, except a nod, an okay, an interesting. Nothing more. And if you start to tell him something, well, on a good day he'll simply walk away or continue talking as if you didn't say anything. On a bad day, hmm it could go many different ways. Usually he'll scream and get upset like a 2 year old who is trying to express them self but is frustrated and throws a 2 year old tantrum. A good tantrum is he's upset and sad about it and cries. A bad tantrum is he hits and gets physical. Now just the fact that he was trying to have a conversation tells me he's probably in a little better place then usual, therefore, he might be just a little more flexible than a typical moment. He might just express for us to stop, or he'll just simply continue talking, or he'll walk away. These are all very acceptable things to do. But sometimes I'm caught off guard and it's not as easy as that.
This is how our world goes on a good day with him; because Autism still interferes with his capabilities at this point to socially respond, react and engage in a more typical and appropriate way. That's what he is learning to do everyday the behaviorists are here. This is what we are continually working on 24-7 with him when he's having a day he can handle it. This is our constant challenge. So few days he simply can't handle it. He simply isn't able to deal, isn't able to move out of his brain stem of simply just survival mode- remember fight or flight :) and move to a more rational part of his brain to cope and navigate the world and in this world, be a social being. Now a social being with dogs- yes he does that well. He gets dogs. He understands dogs- and they seem to understand him. It's beautiful. But our world is a human world. A world where we engage with other humans. We engage with family members, friends, neighbors, peers, teachers, etc. But it's important to learn how to engage in this world properly. And when I say properly, I mean to just simply say I have to go, I am not able to talk, I need a break, I need....... Rather then the alternative that he currently uses.
Don't get me wrong. We have some amazing wonderful engaging moments. If you are walking a dog down our street. Watch out- my son will want to talk to you. He'll want to ask about your dog, and tell you about our dog and about dogs in general. He's amazing this way. And he has good days where he absolutely tries his hardest. He tries and puts all his energy and life into focusing on properly reacting and engaging. But unlike you and me, this takes everything out of him. It literally zaps him of all his strength and energy. It takes him so much to just handle that moment with another person. He gets exhausted. And if you don't let him drive the moment, it's that much harder for him and he's not really sure what to do. If you let him drive it however, well let me tell you that you just made a new friend. But know that this is what he'll always want to talk to you about. And if you really pay attention, you might just notice that every time he see's you, the conversation is exactly the same. Almost word for word. Like a transcript of the last time you talked. He'll ask you the same questions over and over, as if you never told him the answer, but you have. He'll want to show you the same tricks he's taught Oliver or just tell you about them. And he'll say it in a way that is like a tape recorded conversation. Almost word for word. This is also very common for kids with Autism. He has what they refer to as delayed echolalia. It helps him to have a conversation at some point- so it's like he records in his head everything he hears and then when appropriate he'll repeat it at a later time to give the information. Many times it's something he heard on the Dog Whisperer- one of his favorite shows. And again, it's word for word what Caesar Milan said. I know because I watch those shows too, then I hear him repeat it later to someone else. Or he'll say it to one of us. It's actually quite fascinating, and really shows how differently his brain works. But as they say different doesn't mean bad. Different is different. He learns differently. But it doesn't mean he's any less intelligent- in fact, he's probably smarter than a lot of kids his age. Just in a different way. He's never had more then 3 months of a formal education for both kindergarten and first grade. But he reads almost everything that he WANTS to. He does math addition, subtraction in his head as if it's not big deal. Especially basketball scores or football scores- has he ever taken a math test of any kind. Nope, not one ever! In fact if you present a math problem in a vertical equation, he'll probably not even know how to do it. Put it horizontal- yep, no problem. Again, brains are different. But knowledge is still there. He understands fractions, without any education or lesson on them. His experience is he and I cook. He reads recipes. He figures out how to measure for this or that. These are all the teachable moments that I use to help him, no necessarily educate him. But to simply help him be able to get a long and have some practical life skills. Which is by far more important to us then any formal education. Because our experience is one that cannot be graded, formalized, traditional, typical, or even taught in the way that we all know. It's embedded in everything we do. He leads it, he guides it, he will either engage or it's over. If it's pushed, he pushes back harder. If he's interested- he jumps 2 feet into it and becomes apart of it. He has a passion for learning. A very strong passion, but all elements have to be just right in order for him to access the part of his brain that can lead him to the learning process. It's not easy for many. And it's especially hard for kids like my Ty.
But again back to how does he get an education? Well, he's learning all the time. Learning different things. Learning how to control his body because this didn't happen developmentally the way it should have. He's learning how to effectively communicate. He's learning that learning is fun. He's learning things that interest him. (Wow wouldn't that have been nice to be able to do this when we were all younger, rather then waiting until College- which is what College is- a time to learn what interests us). So, in a nut shell. He's always learning. Just differently than mainstream. But that's okay, if that's what he needs. No one ever said it was going to be easy, whether in the typical mainstream way, or a different way. But I believe that he has so much to offer this world; we just have to help him get out into the world.
And here is today's sleep picture!
