There are many aspects to raising an autistic child, that I would have never thought about before I had one. Even having worked with autistic kids in the group home setting, there were still aspects I had never anticipated. Probably one of the most obvious aspects is cost. There was recently a New York Times article that pointed out the cost of raising an autistic child, http://www.latimes.com/health/la-fi-lazarus-20111011,0,854035.column . For me, the most expensive part is childcare. Holden has not done well in day-cares, some have out right said they can’t handle him, others have said he could come, but then call everyday after and hour or so and say they need me to pick him up, because he is not “Cooperating”. Uh, you think? Even his private music therapy, which I had to put on hold, is much cheaper then childcare. On a good month, I pay around $1500.00 a month in childcare, on a bad month (meaning kids out of school, like summer) it can be as much as $1900.00. Zane is not really even a factor, it’s all Holden. There are more expense that arise, but this is the biggest for me. This stretches my budget so thin, that there really isn’t much left for anything. Someone was asking me why I haven’t started dating, I have been “single” for quite long enough in their opinion. Well, lets see, I can’t even afford to go out to Starbucks and buy coffee for two, I can’t afford a baby sitter just for fun, and oh yeah, who wants to date a guy with an autistic kid, talk about baggage. I am actually fine being single, but I feel Zane if very affected by out lack of extra money.
Obviously all kids want toys, and certainly don’t want to hear no for an answer. Even if I had an unlimited amount of money, I am sure Zane would want more. However, there are times when we have to stretch everything, even certain food items out. That is not to say there is no food, but I may ask Zane to drink apple juice, instead of milk, because I need the milk to last a few more days. As far as frivolous things, well I just can’t afford it. In the good old days, we would often go to Soup Plantation on Sundays, and Barnes and Nobles for Hot Chocolate and a cookie on Thursdays. That had to turn into Slurpee's on Sundays. Which has turned into Slurpee's once in a while. I think Holden enjoys doing all those things, but when we don’t do them, he is unaffected. He is just as happy hiking on dad’s shoulders, or running up and down the beach. Zane on the other hand, does think about it, and miss it, and craves it. He remembers the days of Dad bringing him home gifts when he got home from work too. He got so used to it, he would often ask me what I got him, before even saying hi to me. There is no question that during the good times, I probably over indulged in things for Zane, and that adds to his wanting more now. Still I don’t blame him, I miss going to Soup Plantation on Sundays too. I miss being able to give him treats from time to time, and being able to go to a street fair, and not come back empty handed.
The hardest part is trying to make him understand that it is not his brothers fault. This is the greatest source of animosity for Zane. It becomes his white whale, and he Captain Ahab, totally and completely obsessed, and tortured by it. He will try to get me to join him in his hypothetical scenarios: “What if Holden hadn’t been born, wouldn’t life be better for us?” I refuse to join in, and get that sickening feeling in my stomach, as I have to acknowledge in my own head that, yes it would be. That doesn’t mean I would change anything for the world. Holden has added such a dimension to my life, and changed me in so many way, for the better! When I refuse to join him in his hypothetical dream world, he goes after his next target. Even if I believed there was a responsible party for our current financial hardship, I don’ think it’s healthy for Zane to have a target for his wrath. As it is, I do not believe there is a responsible party, and we simply need to make the best of the situation, and be happy we have a roof over our heads, clothes on our backs, and food on the table. It’s possible that Holden may be able to go into a daycare situation in a few years. It’s equally possible we will move to a community where there are actually special needs day-cares. These do exist, just not where we live. There is actually one I have read about, that is even open on Saturdays, but is a few towns over. In the mean time, I try to take responsibility for our situation, and Zane doesn’t like it when I do that. He would much rather blame other people, then blame me. Most of the time, he is fine with our current situation, but then he gets reminded of the “good ole days” when he wants to indulge in a pizza, or Rubio’s, or Starbucks.
Obviously all kids want toys, and certainly don’t want to hear no for an answer. Even if I had an unlimited amount of money, I am sure Zane would want more. However, there are times when we have to stretch everything, even certain food items out. That is not to say there is no food, but I may ask Zane to drink apple juice, instead of milk, because I need the milk to last a few more days. As far as frivolous things, well I just can’t afford it. In the good old days, we would often go to Soup Plantation on Sundays, and Barnes and Nobles for Hot Chocolate and a cookie on Thursdays. That had to turn into Slurpee's on Sundays. Which has turned into Slurpee's once in a while. I think Holden enjoys doing all those things, but when we don’t do them, he is unaffected. He is just as happy hiking on dad’s shoulders, or running up and down the beach. Zane on the other hand, does think about it, and miss it, and craves it. He remembers the days of Dad bringing him home gifts when he got home from work too. He got so used to it, he would often ask me what I got him, before even saying hi to me. There is no question that during the good times, I probably over indulged in things for Zane, and that adds to his wanting more now. Still I don’t blame him, I miss going to Soup Plantation on Sundays too. I miss being able to give him treats from time to time, and being able to go to a street fair, and not come back empty handed.
The hardest part is trying to make him understand that it is not his brothers fault. This is the greatest source of animosity for Zane. It becomes his white whale, and he Captain Ahab, totally and completely obsessed, and tortured by it. He will try to get me to join him in his hypothetical scenarios: “What if Holden hadn’t been born, wouldn’t life be better for us?” I refuse to join in, and get that sickening feeling in my stomach, as I have to acknowledge in my own head that, yes it would be. That doesn’t mean I would change anything for the world. Holden has added such a dimension to my life, and changed me in so many way, for the better! When I refuse to join him in his hypothetical dream world, he goes after his next target. Even if I believed there was a responsible party for our current financial hardship, I don’ think it’s healthy for Zane to have a target for his wrath. As it is, I do not believe there is a responsible party, and we simply need to make the best of the situation, and be happy we have a roof over our heads, clothes on our backs, and food on the table. It’s possible that Holden may be able to go into a daycare situation in a few years. It’s equally possible we will move to a community where there are actually special needs day-cares. These do exist, just not where we live. There is actually one I have read about, that is even open on Saturdays, but is a few towns over. In the mean time, I try to take responsibility for our situation, and Zane doesn’t like it when I do that. He would much rather blame other people, then blame me. Most of the time, he is fine with our current situation, but then he gets reminded of the “good ole days” when he wants to indulge in a pizza, or Rubio’s, or Starbucks.
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