Saturday, January 4, 2014
Thursday, January 2, 2014
another month has passed
Things are fine. Life is life.
Ups and Downs...
UPs:
-that we are fairly stable on the meds we have now so we don't have to go to the psychiatrist again for a couple of months.
-Ask for a handicapped sticker at amusement parks if you can! It is the best. We went to Legoland and got one last week. Great to get a little perk here and there when you have a lifestyle that is difficult.
Downs:
-One of the biggest challenges right now is date night with my husband. I can't get a babysitter (aside from my dad who we cannot abuse too much) and it stinks not being able to plan a date when needed. we often trade with a friend after kids are in bed but with the holidays we've missed a couple of months. Hopefully we can get back into the swing of things soon. I have a gift card to Flemings that I got in the summer that we still haven't been able to use.
-We are supposed to move from San Diego to Houston this summer. My stress is going to overflow trying to plan this move for this child. I try really hard not to feel sorry for myself but this situation is difficult for me. I keep thinking "If I didn't have Calvin, this would be so easy. We could just pick where we want to live, find a school for the girls and have so much fun with and year of adventure in Texas....instead we have to find a school for Calvin, pay $40K for tuition, live close enough that I can drive him to school, worry about neighbors listening to him scream and calling the police on us and be in financial ruin after moving twice in a year and financing his school....." I suppose I should count my blessings and be super thankful that we are going to a big wonderful city where there are schools available. And have faith that it will work out. I know it will. I have a lot more to research and much more praying to do. I am sure it'll work out.
-Jo, my two year old is feisty as they come. She now has more emotional maturity than Calvin. Which is sort of funny, but also sort of sad. She is only two. Recently in the car Calvin was very upset and grumpy. Jo was teasing him by singing. (When he is upset he likes everyone to be silent and all noise bothers him) he turned around and said "F$*& you, Jo" and she said "F(&^ you, Calvin" right back. I couldn't help but laugh.
Ups and Downs...
UPs:
-that we are fairly stable on the meds we have now so we don't have to go to the psychiatrist again for a couple of months.
-Ask for a handicapped sticker at amusement parks if you can! It is the best. We went to Legoland and got one last week. Great to get a little perk here and there when you have a lifestyle that is difficult.
Downs:
-One of the biggest challenges right now is date night with my husband. I can't get a babysitter (aside from my dad who we cannot abuse too much) and it stinks not being able to plan a date when needed. we often trade with a friend after kids are in bed but with the holidays we've missed a couple of months. Hopefully we can get back into the swing of things soon. I have a gift card to Flemings that I got in the summer that we still haven't been able to use.
-We are supposed to move from San Diego to Houston this summer. My stress is going to overflow trying to plan this move for this child. I try really hard not to feel sorry for myself but this situation is difficult for me. I keep thinking "If I didn't have Calvin, this would be so easy. We could just pick where we want to live, find a school for the girls and have so much fun with and year of adventure in Texas....instead we have to find a school for Calvin, pay $40K for tuition, live close enough that I can drive him to school, worry about neighbors listening to him scream and calling the police on us and be in financial ruin after moving twice in a year and financing his school....." I suppose I should count my blessings and be super thankful that we are going to a big wonderful city where there are schools available. And have faith that it will work out. I know it will. I have a lot more to research and much more praying to do. I am sure it'll work out.
-Jo, my two year old is feisty as they come. She now has more emotional maturity than Calvin. Which is sort of funny, but also sort of sad. She is only two. Recently in the car Calvin was very upset and grumpy. Jo was teasing him by singing. (When he is upset he likes everyone to be silent and all noise bothers him) he turned around and said "F$*& you, Jo" and she said "F(&^ you, Calvin" right back. I couldn't help but laugh.
Tuesday, November 26, 2013
like calvin
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.
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 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.
Tuesday, October 15, 2013
problems and solutions
We've had a crazy few weeks with Calvin mastering the new trick of not getting off the bus at school. My gas bill has skyrocketed with all the trips I've made down to his school (30 min each way x 20 times since the school year started). We really needed an idea to help with this. Plus, it wastes my entire day. Anyway, ABA uses the idea that you reward the positive and ignore the negative. While I had been trying to think of a way to punish Calvin for making me drive down to school, since it is so punishing to me, I realized there really isn't anything in that arena that would actually work. So a reward for getting off the bus is going to be our first try -- if he gets a treat if he gets off the bus. Last night we went to the store and he picked some fruit snacks and he gets one little bag if he gets off the bus at school. He told me "Mom, that is a really good idea." I got a kick out of that. Hopefully it works long enough to get him back in the habit of hopping right off the bus when he gets to school!
We will be starting in home ABA therapy soon. It takes a while to get approval from insurance. We had an evaluation and another meeting to go over treatment plan. we are trying to get approved for 4 hours a week in home plus 2 hours of consult. That would be awesome! We are making up for lost time. We should have started this YEARS ago.
Saturday, October 5, 2013
What's new?
We continue to try medications, hoping to find a magic mixture. I was talking to an old friend a few days ago who shared the story of her (now 40 year old) nephew who has a similar temperament to Calvin. She mentioned it took YEARS for the family to find the right medicines to help him and he is doing remarkably well. It helped me to realize I shouldn't give up. However, it does get me to worrying about the $. We are paying out of pocket for this psychiatrist and it is adding up. We've hit the $2000 mark after 4 months. We'll be in trouble if we have to keep this up all year. I need to call insurance and see if there is a way for them to pay for this doctor.
We've had a lot of trouble with the bus the last few weeks, as I had previously mentioned. The bus drivers recently "bid" on routes and Calvin's driver who we have loved got out bid for Calvin's route. We have a new driver now who has already had several complaints from her and I am worried a bit about her ability to endure 3 hours a day with Calvin on her bus.
Elder Holland gave the most amazing talk today, speaking to people with mental illness or who care for people with mental illness. It could have been given to just me, but I know there are so many who suffer with various mental illnesses. I'll post the link when it becomes available.
We've had a lot of trouble with the bus the last few weeks, as I had previously mentioned. The bus drivers recently "bid" on routes and Calvin's driver who we have loved got out bid for Calvin's route. We have a new driver now who has already had several complaints from her and I am worried a bit about her ability to endure 3 hours a day with Calvin on her bus.
Elder Holland gave the most amazing talk today, speaking to people with mental illness or who care for people with mental illness. It could have been given to just me, but I know there are so many who suffer with various mental illnesses. I'll post the link when it becomes available.
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