Since the death of my mother, I have assumed guardianship for my brother. It's an honor, a pleasure, and both something I've expected to do for a long while and a responsibility that I take seriously. Well meaning people have questioned my decision to take him in when I already deal with Baby Bear and his needs. I've thought about that myself, and prayed about it. I still believe this arrangement is best for everyone.
While the day to day life has settled down a bit and we are figuring out (still) how to make life run smoothly for everyone, sometimes we do hit a snag. Sometimes it is an easy fix, sometimes not, just as it would be in any family. Today we ran into a brick wall of sorts, and it is heartbreaking for my brother, but much more for me.
Because of his disabilities, my brother cannot get his driver's license. As sister I would love to get him that much wanted document. Well meaning family would too, and they have a habit of encouraging him to try. For all well meaning, loving people out there, may I please say STOP IT. Please do not undermine the parent, guardian, or other person responsible for someone's safety and well being. It makes it harder to do our jobs when we are confronted not only with "I want" but also "so and so says...". I know you have the best of intentions and love B. and others like him. That is wonderful. But discuss it with the guardian first, please.
Do you realize the impact your words have on B. (or other friend/ loved one) and his relationship with me? You say things off the cuff, whether you truly believe what you say to be true, or because you would rather not tell the truth in order to spare his feelings. Then you leave and I get to be the one to be the meanie and crush his feelings (at least that's how I feel).
In my own situation, I've been around longer. I've seen what my brother is and is not capable of. I know what the government has to say about certain aspects of his life (whether or not I agree with their assessment is another story entirely). I can see more clearly the frustration my mother felt when I or someone else tried to give our own two cents. Yes, sometimes she would listen to advice, but for 57 years, give or take, she was the one who lived with him and took care of him. She knew what was best.
Believe me, I would love it if B. could get his license. But there are safety issues you aren't seeing. Never mind the financial issues that come with that piece of paper and plastic. Saying no to my brother on anything is very hard. He's older than I am for one thing. The main reason is I love him dearly and don't want to see him hurt, whether emotionally or physically.
Lest anyone think I am speaking directly to one or more certain persons, I am not. I'm just putting out there what I see in general. Family and friends are very important and should be there to encourage and help, not to cause problems, intentionally or unintentionally.
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts
Tuesday, February 10, 2015
Monday, February 18, 2013
One Tough Decision: Does He Stay with Us or Go to a Home?
`I really did not want to write today, but yesterday I made a promise to myself. I made up my mind to write something every day, for 30 days. And let's face it, writing is cathartic. You can get all your thoughts and feelings and plans down on paper, all your emotions. You can write letters to people who intrigue you, bedevil you, anger you, help you. You can simply write lists or fill the page with stuff that only you understand. Then you can hit send, hit delete, mail it, destroy it. I love having that power.
While I will be writing every day, I don't know that all of it will end up being published to read. My goal is still two to three posts a week, and I've yet to meet that on a consistent basis lately. I'm working on it though. I have a lot to say about life. I have way too much to say about autism.
Yup, still on that kick so far. I'm at a point of frustration at myself because there are days like today that I don't know which end is up. I know there are parents who deal with the negative aspects of autism on a regular basis like I do so when I talk about my experiences and thoughts, I want to be honest.
My son isn't always loving and sweet and kind. For whatever reason, he lashes out. He had a sonogram today to check his liver and within the next few weeks he will see a gastroenterologist. Somewhere along either of those two lines is the reason for his tummy issues. While I think that part of the problem is he has turned some of it into a "stim" (self stimulation, in short, a tic that a person does out of habit or as a way of calming or lessening self boredom), there is a medical reason behind the majority of it. The belching and the vomiting gets on his own nerves I'm sure, because he gets angry quite easily the regurgitation.
I know he goes through a lot, but sometimes I reach my own breaking point. While he does not get violent every day or for long when it happens, it's wearing on the nerves. I hurt for him inside because I desperately want to fix whatever it is that is bothering him, frustrated because sometimes I just can't. I worry that one day he will progress beyond hitting or biting, and harm himself, or me. I'm a big girl, but he's a lot stronger than I am.
It's during bad rages that I begin wondering, Should I find a group home or a hospital/school in which to place him? It's not an easy decision, especially when you have two soft hearted parents and well meaning family who love to give advice on the matter. Most of the advice is, Don't do it.
As parents, we want to take care of him no matter what. At the same time he can over power me and can currently give his Dad a good run for his money. It's during the rages that i sometimes think, That's it. We have to place him somewhere. Afterward, when he's calm, I'm right back to thinking, nah. It'll be okay. And I'm good for awhile.
I'm at a stand still for now. I've prayed about it, our church family prays for our wisdom in caring for J. We've talked about it all, my husband and I, on several occasions. While one or the other of us has at one time or another been for placing him in a home, the other shies away. At this point, neither of us is ready to commit to having J anywhere but with us. Until we both agree, we continue on.
One day we may have to go ahead and make that decision, once and for all. Neither of us is looking forward to it. It's not like we would find a place for him and then forget he ever existed. That would never happen. We would visit, bring him home at times, continue to care. So why does a decision like this have to be so hard?
While I will be writing every day, I don't know that all of it will end up being published to read. My goal is still two to three posts a week, and I've yet to meet that on a consistent basis lately. I'm working on it though. I have a lot to say about life. I have way too much to say about autism.
Yup, still on that kick so far. I'm at a point of frustration at myself because there are days like today that I don't know which end is up. I know there are parents who deal with the negative aspects of autism on a regular basis like I do so when I talk about my experiences and thoughts, I want to be honest.
My son isn't always loving and sweet and kind. For whatever reason, he lashes out. He had a sonogram today to check his liver and within the next few weeks he will see a gastroenterologist. Somewhere along either of those two lines is the reason for his tummy issues. While I think that part of the problem is he has turned some of it into a "stim" (self stimulation, in short, a tic that a person does out of habit or as a way of calming or lessening self boredom), there is a medical reason behind the majority of it. The belching and the vomiting gets on his own nerves I'm sure, because he gets angry quite easily the regurgitation.
I know he goes through a lot, but sometimes I reach my own breaking point. While he does not get violent every day or for long when it happens, it's wearing on the nerves. I hurt for him inside because I desperately want to fix whatever it is that is bothering him, frustrated because sometimes I just can't. I worry that one day he will progress beyond hitting or biting, and harm himself, or me. I'm a big girl, but he's a lot stronger than I am.
It's during bad rages that I begin wondering, Should I find a group home or a hospital/school in which to place him? It's not an easy decision, especially when you have two soft hearted parents and well meaning family who love to give advice on the matter. Most of the advice is, Don't do it.
As parents, we want to take care of him no matter what. At the same time he can over power me and can currently give his Dad a good run for his money. It's during the rages that i sometimes think, That's it. We have to place him somewhere. Afterward, when he's calm, I'm right back to thinking, nah. It'll be okay. And I'm good for awhile.
I'm at a stand still for now. I've prayed about it, our church family prays for our wisdom in caring for J. We've talked about it all, my husband and I, on several occasions. While one or the other of us has at one time or another been for placing him in a home, the other shies away. At this point, neither of us is ready to commit to having J anywhere but with us. Until we both agree, we continue on.
One day we may have to go ahead and make that decision, once and for all. Neither of us is looking forward to it. It's not like we would find a place for him and then forget he ever existed. That would never happen. We would visit, bring him home at times, continue to care. So why does a decision like this have to be so hard?
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