Picture this. You set sail to go to a wonderful exotic location. All your friends talk about this place. How warm the weather is. How wonderful the people are. You end up on a foreign island. The wrong one. This wasn't the one my friend's all talked about. You desperately try to find your way back to where you wanted to go. Only to realize your stuck. Forever. Alone. You didn't get a chance to research the place you were going. Who lives here? What is the weather like? What language do they speak? This is how I look at my life with Reilly. All my friends ( for the most part) have "typical" developing children. You read the books, did the research. After all, all your friends and even strangers have raised "typical" developing children. So you can base on what to do from their experience. We were thrown into this blind. For a long time we just "winged" it. We didn't have any friends with what we were going through.I didn't want to be where we were sent.
This is the place where we were sent. At first the people are welcoming. They are wonderful. All of a sudden one day they retaliate against you. They don't like you. In fact, they don't even remember your name anymore. Even though you've known them for years. Just when you think the local people hate you, they begin to like you again. Your not sure if you can get used to that behaviour. You start to realize everything you do sets these people off. The sounds, what you feed them etc. No one taught you what the language was or the history of the people. Or even what weather to expect. You are starting to hate living here but you can't find a way out. You have to get used to it. Just when you think you cannot stand it anymore, you see a beautiful flower emerge. From now on you keep searching for those flowers all over the island. Some days you find none, and some days you find a whole patch.
Most people only see this island from afar, through a telescope. Which has a narrow point of view. The people that see where you live have an opinion on what they think the island looks like but they have no idea the things you have been through living in this unknown, unpredicatable island on your own.
Monday, 16 January 2012
Monday, 9 January 2012
More than meets the eye
It's been a while since I have written last. Part of me didn't want to write anymore because I didn't feel like anyone understood what is happening. Who reads this anyway? To be honest I have been feeling down. Don't worry, you haven't noticed. I put on a good front. Or maybe it's portrayed as how we handle Reilly and his situation as just natural and don't make it seem hard. True, we haven't known Reilly any other way than he is now. But that doesn't mean it's not the hardest thing to go through each day. Sure, I may be complaining, but I believe I have every right to finally announce to the world how much my situation sucks.
Instead of getting to know my friends, I get to know the therapists and doctors. My "playdates" consists of the therapist coming over for intervention. Day trips, coffee with friends and groups with other children don't exist in my vocabulary. Our life consists of medical procedures, doctors, therapy, implementing new schedules or activities for Reilly, and the daily behaviour issues Reilly has.
To be honest, everyone only sees a small percentage of Reilly. I do enjoy hearing how Reilly is doing well but don't be fooled that his how he is all day. It makes it seem the things I go through is trivial when people only point out the good things he is doing and don't support me through the tough times. He is becoming more confident in who he is and what he wants. This turns into more erratic behaviour. If he cannot get what he wants then it's a physical fight. He kicks and thrashes his body. Meanwhile, screaming at us to stop. He may only be 30 pounds but he defeats my 120 easily. It takes us almost 15 minutes to brush his teeth everyday because we have to hold him down by his arms and legs. Sounds mean but we have to brush his teeth otherwise he'd have more teeth problems then he already does. On top of the ton of other medical problems we go through all the time.
Speaking of that, I haven't shared with any of my friends that last year when Reilly was hospitalized for his low B12 problems he was tested for cancer, tumours in his brain and blood pooling behind his stomach, and liver problems. This is something that still bothers me and I can't get past it. It's hard to be strong when their is 5-6 doctors trying to treat your child and scratching their heads and the cause of his problems.
I wish my friends could live my life for one day. Maybe they would say hello more often, ask me if I want to get out for a bit away from my kids.
Please don't try to compare Reilly to other children in similar situations to try to make me feel better, or tell me that life will get better. I don't believe in my heart that Reilly has a mild case of Autism. Neither does his doctor. Just because it may seem one particular way to others, it's not always the whole truth. He will suffer from Autism his whole life. It will be a battle for him forever.
I hope one day he won't rely on me to be self sufficient with everything. When you see him dressed, fed and smiling. Look behind him. It's been us. It took us half the morning with chaos to get him in those clothes, to fight him to even eat at the dinner table. That smile on his face is because he knows no different. He knows that we keep fighting for him and make sure he has the best opportunities.
One of the best days I had was a week ago when I picked Reilly up from preschool and he ran to me and said " Mommy, there you are. I missed you". He's never said that to me before. We proceeded to head to the car as it was raining outside. Reilly looked up, held out his hand and said, "it's raining". He's never been aware of his surroundings before, like the weather or people etc. So that was a huge step for him. He just recently started to learn what emotions and colors are. This is the stuff that makes the struggles worth it.
Instead of getting to know my friends, I get to know the therapists and doctors. My "playdates" consists of the therapist coming over for intervention. Day trips, coffee with friends and groups with other children don't exist in my vocabulary. Our life consists of medical procedures, doctors, therapy, implementing new schedules or activities for Reilly, and the daily behaviour issues Reilly has.
To be honest, everyone only sees a small percentage of Reilly. I do enjoy hearing how Reilly is doing well but don't be fooled that his how he is all day. It makes it seem the things I go through is trivial when people only point out the good things he is doing and don't support me through the tough times. He is becoming more confident in who he is and what he wants. This turns into more erratic behaviour. If he cannot get what he wants then it's a physical fight. He kicks and thrashes his body. Meanwhile, screaming at us to stop. He may only be 30 pounds but he defeats my 120 easily. It takes us almost 15 minutes to brush his teeth everyday because we have to hold him down by his arms and legs. Sounds mean but we have to brush his teeth otherwise he'd have more teeth problems then he already does. On top of the ton of other medical problems we go through all the time.
Speaking of that, I haven't shared with any of my friends that last year when Reilly was hospitalized for his low B12 problems he was tested for cancer, tumours in his brain and blood pooling behind his stomach, and liver problems. This is something that still bothers me and I can't get past it. It's hard to be strong when their is 5-6 doctors trying to treat your child and scratching their heads and the cause of his problems.
I wish my friends could live my life for one day. Maybe they would say hello more often, ask me if I want to get out for a bit away from my kids.
Please don't try to compare Reilly to other children in similar situations to try to make me feel better, or tell me that life will get better. I don't believe in my heart that Reilly has a mild case of Autism. Neither does his doctor. Just because it may seem one particular way to others, it's not always the whole truth. He will suffer from Autism his whole life. It will be a battle for him forever.
I hope one day he won't rely on me to be self sufficient with everything. When you see him dressed, fed and smiling. Look behind him. It's been us. It took us half the morning with chaos to get him in those clothes, to fight him to even eat at the dinner table. That smile on his face is because he knows no different. He knows that we keep fighting for him and make sure he has the best opportunities.
One of the best days I had was a week ago when I picked Reilly up from preschool and he ran to me and said " Mommy, there you are. I missed you". He's never said that to me before. We proceeded to head to the car as it was raining outside. Reilly looked up, held out his hand and said, "it's raining". He's never been aware of his surroundings before, like the weather or people etc. So that was a huge step for him. He just recently started to learn what emotions and colors are. This is the stuff that makes the struggles worth it.
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