I think I've decided that from here on out all blogs will just be about Thomas and the journey we are on. Can I get an AMEN!
So I went and deleted some older ones, left some really old ones that had some previous meaning for me, but from here on out, it's all about him, I love you T, this is for you!
Love
MOM
Tuesday, April 19, 2011
What's Right For Him?
Well it's been a week already and it's only Tuesday! Do you ever have weeks like those. I'm going to say that this week actually started on Saturday because we had a destructive tornado rip through our town. It flipped cars, trucks, tractor trailers. It tore down buildings and picked up one and threw it 40 yards away. It snapped trees, uprooted others and tore down the power lines. It went up the street that runs parallel to my road and was pretty much a block away. I was in South Carolina when this happen, while my family was here, needless to say my heart stopped as soon as I found out. So now there are many efforts being made to clean up the tragic mess.
This Friday I have to take Thomas to Duke, this is an appointment we have known about for months but I've dreaded the entire time. He has a mole on his ring finger that has changed in color, size and shape. His regular doctor here has shown some concern in the way it looks telling me that it could possibly be something that could turn into Melanoma and should be checked by this Dr at Duke. This poor kid has suffered with something since the day he was born and I fear for him that there is a pattern forming. I just want him to be ok, of course and want what is best for him. For anyone that does keep up with this, I'll do my best to let you know what the outcome is of his hand after Friday.
We met last week with the Case Manager who was great, very nice and Thomas talked a tiny bit to her before completely shutting down. She signed him up for the CAP program and we will go before the Beacon Center in about a month or so to present his case. All of this I knew, but it just seemed different when doing it and filling out the questionnaire on my own son. I had to answer some questions that I really did have to think about and she really did have to tell me that I had to separate my heart from it. For instance is there the possibility of him ever being institutionalized (it was worded slightly different)... Well yes if he doesn't receive any services at all from anywhere or we aren't able to pay for anything for him, then yes the possibility is there. The only reason I can say that is because Thomas can become violent with tantrums, throwing, hitting, etc. Then there is a safety issue not only for him but for his brother and his twin sister. I'm not worried about my husband or myself, but I do have to think about my other two children as well as Thomas. What's right for all of them? What's right for him?? I want him here with us, ALWAYS! I told her I didn't think I could ever, ever put him anywhere. It would have to be the most extreme of circumstances, but I knew what she meant by separating my heart from it. If he never gets any services, things would be bad, it would only get worse and then that question could be very real. It made me so sad to think about.
What's right for Thomas? Are we living in the best place for him? I don't know, it seems to me that he gets judged a lot here. It's probably like that everywhere. I'm not sure that the services are the best here, then again they may be like this everywhere. Neither my husband or myself make enough money to be able to pay for all of the things that he NEEDS and I do mean truly needs to help him. He needs sensory items at home, he needs therapy and we've already seen insurance deny that once. We would love to see him get an Autism Assistance Dog. All of these things costing thousands of dollars. How do people do it, especially with multiple children?? I wonder if public school is the best option for him next year, I worry about him. Who will look out for him while I'm not there? They don't know him yet, so they don't know little quirks, tics, etc. Is it easier to keep him at home and homeschool him? Don't get me wrong, I'm not saying these are necessarily things I'm going to do, just things that daily go through my mind depending on what kind of "thomas" day we are having.
So how do I know what's right for him, I do the best I can. I pray often. I ask God for guidance, for good days, for the right people in our path to help us find out what is available. I'm hoping we are living in the right community for him, I hope that I do enough in the community to help educate and make people aware of Autism so that when he is out in the community people will know who he is and they won't look at him differently but instead truly see him. I hope that my husband and I can somehow pull together to do enough for him where insurance and other resources don't kick in that he gets what he needs. Most of all I hope all three of my kids are happy, because I know none of this is easy and all we can do is take it a day at the time and do the best we can.
Thomas is who he is and we love him for every ounce of that person! I wouldn't change a thing about him, about how our life has been. It is very stressful and I do still feel like crying at times, but I wouldn't trade him for anything else in this world, he has blessed me more than he will ever know.
This Friday I have to take Thomas to Duke, this is an appointment we have known about for months but I've dreaded the entire time. He has a mole on his ring finger that has changed in color, size and shape. His regular doctor here has shown some concern in the way it looks telling me that it could possibly be something that could turn into Melanoma and should be checked by this Dr at Duke. This poor kid has suffered with something since the day he was born and I fear for him that there is a pattern forming. I just want him to be ok, of course and want what is best for him. For anyone that does keep up with this, I'll do my best to let you know what the outcome is of his hand after Friday.
We met last week with the Case Manager who was great, very nice and Thomas talked a tiny bit to her before completely shutting down. She signed him up for the CAP program and we will go before the Beacon Center in about a month or so to present his case. All of this I knew, but it just seemed different when doing it and filling out the questionnaire on my own son. I had to answer some questions that I really did have to think about and she really did have to tell me that I had to separate my heart from it. For instance is there the possibility of him ever being institutionalized (it was worded slightly different)... Well yes if he doesn't receive any services at all from anywhere or we aren't able to pay for anything for him, then yes the possibility is there. The only reason I can say that is because Thomas can become violent with tantrums, throwing, hitting, etc. Then there is a safety issue not only for him but for his brother and his twin sister. I'm not worried about my husband or myself, but I do have to think about my other two children as well as Thomas. What's right for all of them? What's right for him?? I want him here with us, ALWAYS! I told her I didn't think I could ever, ever put him anywhere. It would have to be the most extreme of circumstances, but I knew what she meant by separating my heart from it. If he never gets any services, things would be bad, it would only get worse and then that question could be very real. It made me so sad to think about.
What's right for Thomas? Are we living in the best place for him? I don't know, it seems to me that he gets judged a lot here. It's probably like that everywhere. I'm not sure that the services are the best here, then again they may be like this everywhere. Neither my husband or myself make enough money to be able to pay for all of the things that he NEEDS and I do mean truly needs to help him. He needs sensory items at home, he needs therapy and we've already seen insurance deny that once. We would love to see him get an Autism Assistance Dog. All of these things costing thousands of dollars. How do people do it, especially with multiple children?? I wonder if public school is the best option for him next year, I worry about him. Who will look out for him while I'm not there? They don't know him yet, so they don't know little quirks, tics, etc. Is it easier to keep him at home and homeschool him? Don't get me wrong, I'm not saying these are necessarily things I'm going to do, just things that daily go through my mind depending on what kind of "thomas" day we are having.
So how do I know what's right for him, I do the best I can. I pray often. I ask God for guidance, for good days, for the right people in our path to help us find out what is available. I'm hoping we are living in the right community for him, I hope that I do enough in the community to help educate and make people aware of Autism so that when he is out in the community people will know who he is and they won't look at him differently but instead truly see him. I hope that my husband and I can somehow pull together to do enough for him where insurance and other resources don't kick in that he gets what he needs. Most of all I hope all three of my kids are happy, because I know none of this is easy and all we can do is take it a day at the time and do the best we can.
Thomas is who he is and we love him for every ounce of that person! I wouldn't change a thing about him, about how our life has been. It is very stressful and I do still feel like crying at times, but I wouldn't trade him for anything else in this world, he has blessed me more than he will ever know.
Thursday, April 7, 2011
Things are going to change
Things with Thomas are about to change. Hopefully everything will be all for good changes and he will be able to handle all of these changes. Anyone who knows anything about Autism and Aspergers knows that it will be difficult for him to accept change, but I'm willing to work with him because I think these changes are going to be good for him and for all of us!
First, he is getting a case manager. This person will be someone who can go with me into the schools when I need her, she can help me to get him services he needs and navigate through the system for things I'm unsure about. She can go to Dr's appointments if I need her to, etc. I am really very excited about having her come in our home and meet Thomas and I so hope that he is receptive to her. I have heard nothing but good things about her and just our first conversation she seemed very nice and very knowledgeable.
We are going to try to get Thomas CAP services. My only concern here is the fact that he is a twin. This is, of course, a unique situation for them because for the last 5 years they have been nearly inseparable. So I fear that this would be a huge change for him to go off with a worker and Emma to always be "out of the loop" so to say, but also I think it will be very good for both of them. It's always hard to know when you are doing the right thing, but of course all of these things are trial and error with him to know what will work best to help him for the long haul!
I am desperately trying to get him SSI which if anyone out there knows anything at all about that, it's a very long process. So far they have put off my appointment 3 times. Wasn't too happy about that, but it is what it is.
I have also started the process of moving his sensory therapy from Raleigh to here in Wilson where we live. This will be much better next year when he starts Kindergarten and hopefully we will not have to pull him out of school during the day. Routine and stability are what he needs and this will be a good change for him.
Finally, for the last 9 months or so we have really wanted to get Thomas an Autism Dog. You can read about them online. The down side is the cost. They are thousands of dollars. The upside is that, just like a seeing eye dog or dog for epilepsy, he can take the dog everywhere he goes. Thomas is a runner and he has meltdowns so the dog would be able to assist him with that, keep him from darting out in traffic or parking lots, etc. The dog could potentially go to school with him as well and I've read stories about that which I find fascinating.
I'm looking for suggestions and help from anyone who has any ideas or has been through any of this already. Most of this is new to us and even though it's been a year already since he was diagnosed, every day is different and we are still learning and on this journey for lifetime! I wouldn't change a thing about my Thomas. I love him just the way he is.
First, he is getting a case manager. This person will be someone who can go with me into the schools when I need her, she can help me to get him services he needs and navigate through the system for things I'm unsure about. She can go to Dr's appointments if I need her to, etc. I am really very excited about having her come in our home and meet Thomas and I so hope that he is receptive to her. I have heard nothing but good things about her and just our first conversation she seemed very nice and very knowledgeable.
We are going to try to get Thomas CAP services. My only concern here is the fact that he is a twin. This is, of course, a unique situation for them because for the last 5 years they have been nearly inseparable. So I fear that this would be a huge change for him to go off with a worker and Emma to always be "out of the loop" so to say, but also I think it will be very good for both of them. It's always hard to know when you are doing the right thing, but of course all of these things are trial and error with him to know what will work best to help him for the long haul!
I am desperately trying to get him SSI which if anyone out there knows anything at all about that, it's a very long process. So far they have put off my appointment 3 times. Wasn't too happy about that, but it is what it is.
I have also started the process of moving his sensory therapy from Raleigh to here in Wilson where we live. This will be much better next year when he starts Kindergarten and hopefully we will not have to pull him out of school during the day. Routine and stability are what he needs and this will be a good change for him.
Finally, for the last 9 months or so we have really wanted to get Thomas an Autism Dog. You can read about them online. The down side is the cost. They are thousands of dollars. The upside is that, just like a seeing eye dog or dog for epilepsy, he can take the dog everywhere he goes. Thomas is a runner and he has meltdowns so the dog would be able to assist him with that, keep him from darting out in traffic or parking lots, etc. The dog could potentially go to school with him as well and I've read stories about that which I find fascinating.
I'm looking for suggestions and help from anyone who has any ideas or has been through any of this already. Most of this is new to us and even though it's been a year already since he was diagnosed, every day is different and we are still learning and on this journey for lifetime! I wouldn't change a thing about my Thomas. I love him just the way he is.
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