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.

2 comments:

Unknown said...

I will give you an AMEN!!! =)

Erika said...

Just keep on praying girl - you've got a lot of people who understand and support you. God will protect Thomas, Emma & David... He will also protect you and Mike - remember God only gives you what you can handle... No matter what decission you make its for Thomas and no one but you and your family have a right to judge that decission - society is full of doubtful judgmental people - BUT the ones that matter the most support Thomas and other children/ Adults like Thomas ... Remember this one quote that a very wise person once told me "Education is the ruler to all successes" - the more you educate the more success life brings us :)