Today I met a new friend at the park. She has three little kids including one boy with down syndrome. On the way home Clare asked, "Mom, you know that boy with blond hair? Is he kind of like Calvin?" I said yes. I explained how he has an extra chromosome and develops differently than most kids.
I thought it was interesting that clare grouped Calvin and this boy in the same category. She doesn't have language for them like special needs or handicapped but it is plain to see, in her experience, that some kids do not behave like others. I was next going to write that I hope she has compassion for these special kids but I do not even need to say that. I know she does. She is a sweet girl.
Tuesday, November 26, 2013
Tuesday, November 12, 2013
a month
It's been almost a month since I've written.What have we been up to.
1. tyring meds. We added a ADHD medication on board. vyvanse. It seems to help a little at school. that is good. Now he's on 5 medications. I don't expect any major changes soon. He seems to have made a little improvement overall. Dr. is hoping in home ABA therapy will make up the difference. Just this week we were denied ABA coverage again though so I am not sure what to do. pay out of pocket, keep fighting or drop it all together and try something else. The problem is that I don't want to fight so long that we never actually get any help!!!!
2. fighting with insurance.non-stop. over ABA therapy (we were denied again) and covering our choice of neruo - psychiatrist. (still fighting).
3. looking for new schools in case we move next year. Trying not to die of a heart attack at the thought of pulling Calvin out of a school where he is finally stable (and has not been stable in 4 years).
4. Having the usual ups and downs.
1. tyring meds. We added a ADHD medication on board. vyvanse. It seems to help a little at school. that is good. Now he's on 5 medications. I don't expect any major changes soon. He seems to have made a little improvement overall. Dr. is hoping in home ABA therapy will make up the difference. Just this week we were denied ABA coverage again though so I am not sure what to do. pay out of pocket, keep fighting or drop it all together and try something else. The problem is that I don't want to fight so long that we never actually get any help!!!!
2. fighting with insurance.non-stop. over ABA therapy (we were denied again) and covering our choice of neruo - psychiatrist. (still fighting).
3. looking for new schools in case we move next year. Trying not to die of a heart attack at the thought of pulling Calvin out of a school where he is finally stable (and has not been stable in 4 years).
4. Having the usual ups and downs.
special soul
Tonight I was having a conversation with my girls (age 5 and turning 8 next week) about keeping the commandments, following Jesus, etc. One of my kids asked in all seriousness, "will Calvin go to heaven or hell?" I am sure she asked this because he hits, screams, swears and is overall not very christ-like in his attributes so I could see how she might think those behaviors would not be considered keeping the commandments. I explained that even though Calvin behaves very poorly some of the time, he is doing his best and Jesus will judge (not us) so we need not worry about that. If he is doing the best he can, he will go to Heaven for sure. If his brain damage does not make him act the way he would like to, God will judge him on the intent of his heart.
Some relevant background for those who don't know me: my personal belief is that innocent children and people housed in minds that are unable make mature and informed decisions will not be held to the same standard on judgement day as those who knowingly and purposefully sin against God of their own free choice. I also believe that we lived with God before we came to this earth and that we chose to come to earth and receive a mortal body with all of the challenges that come with mortality, including illness, aches and pain. After this life, everyone will receive a body restored to its perfect frame. For many of us, it will be our 20-30 year old body in the prime of life. For others, it will be a body that is perfect in ways they never experienced on earth. They blind man will have sight. The crippled will be whole, the sick will be healthy, the mentally ill will have sound mind.
Now back to our conversation. My 8 year old only partially understood the answer. While she acknowledged that Calvin has perhaps a disadvantage and is doing his best with an imperfect mind, she also said that she has a really hard time sometimes too because of piano practice! She does not know what a blessing it is to have ones hardest challenge in life be the requirement to practice the piano for 30 minutes/day!
As the conversation moved in other directions I paused to reflect on my boy and the soul that is housed in his imperfect body. Did he know before he came to earth what his life would be like? Did he know he would be difficult? Did he see how he would behave? Know that people would not want to be his friend? That people would be scared of him? That he would cause heartache and pain? Did he agree to all of this knowing it was his mission on earth? As I though about these things I had a brief vision of who Calvin really is. The noble soul he is.The pure humility of his character. And it gives me reason to do better. To be more patient and more loving. To be more worthy to be his mother.
Some relevant background for those who don't know me: my personal belief is that innocent children and people housed in minds that are unable make mature and informed decisions will not be held to the same standard on judgement day as those who knowingly and purposefully sin against God of their own free choice. I also believe that we lived with God before we came to this earth and that we chose to come to earth and receive a mortal body with all of the challenges that come with mortality, including illness, aches and pain. After this life, everyone will receive a body restored to its perfect frame. For many of us, it will be our 20-30 year old body in the prime of life. For others, it will be a body that is perfect in ways they never experienced on earth. They blind man will have sight. The crippled will be whole, the sick will be healthy, the mentally ill will have sound mind.
Now back to our conversation. My 8 year old only partially understood the answer. While she acknowledged that Calvin has perhaps a disadvantage and is doing his best with an imperfect mind, she also said that she has a really hard time sometimes too because of piano practice! She does not know what a blessing it is to have ones hardest challenge in life be the requirement to practice the piano for 30 minutes/day!
As the conversation moved in other directions I paused to reflect on my boy and the soul that is housed in his imperfect body. Did he know before he came to earth what his life would be like? Did he know he would be difficult? Did he see how he would behave? Know that people would not want to be his friend? That people would be scared of him? That he would cause heartache and pain? Did he agree to all of this knowing it was his mission on earth? As I though about these things I had a brief vision of who Calvin really is. The noble soul he is.The pure humility of his character. And it gives me reason to do better. To be more patient and more loving. To be more worthy to be his mother.
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