One of the difficulties we face with Calvin is that he has somewhat of an orphan disease. I've never met anyone with the same diagnoses as him. I am sure that in the special needs world as with the typical kids world, no too kids are alike.
However, when dealing with problems it is helpful to have a community to draw support from and so that insurance will acknowledge the need for services and pay for them. This is where we are flailing. Insurance will not cover ABA, we applied to the regional center and they will not accept Calvin, even though the need for services (such as ABA therapy, respite care) is apparent. The neuropsyciatrist we see is not covered by insurance. I called insurance to ask them to provide another similar doctor and they don't have one in san Diego but still refuse to pay for me to see the type of doctor we need.
I was so grumpy over these losses that I have not really considered where to go next and took a couple of months of vacation in thinking about these issues. Now, I'm back in the game and ready to move forward.
We got a great offer from one of the ABA agencies in San Diego for an out of pocket payment (still hurts though) for some ABA services. We're going to start that up pretty soon.
Regional center will have to wait and luckily we don't see the psychiatrist as often as we used to so even that cost is significantly reduced.
Friday, January 17, 2014
Tuesday, January 14, 2014
special education bussing
We have been so blessed to have Calvin ride the "short bus" to school for these last almost two years.(if you laughed at the phrase "ride the short bus" that I'll assume you are a bad person. I have one brother and one husband who can't say short bus without laughing and I am sorry to say they are not ideal human beings.)
Overall it has been wonderful and we and met some amazing people. We have also run across a few people who are not quite as wonderful as those who you usually find working in the special needs department!
Calvin has also been creative in finding ways to make the ride to school as unpredictable as possible! Here are some of his tactics for throwing a wrench in what could be a smooth bus ride...
-don't get on the bus when it comes to pick you up
-don't get off the bus when you get to school
-fall asleep on the bus and don't get off the bus when you get to school.
-pretend to fall asleep on the bus and don't get off the bus when you get to school.
We've never had a problem with him getting off the bus at home although occasionally he is asleep on the bus ride home and we have to wake him up to get him off the bus.
With those last 3 options, the bus driver would at first bring him back home, but that is too rewarding, so then they'd wait at school but that took too long and the district didn't want to pay them overtime, so now we meet at the bus yard. When they call me to tell me Calvin is still on the bus I have about 25 min to get there giving me time to load the car and head over. It is just right. Then I drive him to school which is sort of a pain but we make the most of it by going to the beach or zoo afterwards.
Remember when Calvin's bus driver hit him? That driver is no longer in special needs! Crazy!
After that incident we had the best driver ever, Kevin! He genuinely loved Calvin (which is tough to do)! and was so great. He'd do a doughnut day or in-n-out day here and there just because he wanted the kids to feel special. He got "out bid" by a more senior driver so we haven't had him this year. We miss him terribly.
Calvin's aid Jeannine has been with us for a long time, over a year. She is so kind. Calvin adores her.
Calvin's current bus driver is fine...neither great nor terrible. We did have an interesting experience today though. She pulled up the house! I opened the door and waved hello as I usually do and then she drove away down the street. Weird?.... I walked to the end of the driveway and as she looped around to pass our house she slowed down and said, "he won't get up I'm taking him back to the lot." WHAT?! I said, "no, I'll get him off the bus." I walked onto the bus and woke him up and got him off the bus. It was funny. He wasn't mad or angry, he was asleep with his head phones in and never heard her stop or tell him to get up. She was completely furious and fuming. Must be an off day....hopefully she isn't losing patience with him....that would be an unfortunate turn of events.
What's funny is Calvin wasn't mad or trying to be difficult, he was sound asleep with his headphones in and his shirt wrapped around his head so he had no idea they had even stopped and tried to get him off the bus.
It is interested how as an observer I can see that this was an incident where Calvin was innocent but somehow managed to get the driver in a fury. I know this happens to me at home. Since he does cause such a rukus so often and puts people on their guard it is easy to be upset with him often and assume he is trying to cause a problem but the trick is slowing down enough in judgment to see what his intent is and working with him to move forward. A galaxy sized amount of patience is required. I'm still working on growing some more!
Overall it has been wonderful and we and met some amazing people. We have also run across a few people who are not quite as wonderful as those who you usually find working in the special needs department!
Calvin has also been creative in finding ways to make the ride to school as unpredictable as possible! Here are some of his tactics for throwing a wrench in what could be a smooth bus ride...
-don't get on the bus when it comes to pick you up
-don't get off the bus when you get to school
-fall asleep on the bus and don't get off the bus when you get to school.
-pretend to fall asleep on the bus and don't get off the bus when you get to school.
We've never had a problem with him getting off the bus at home although occasionally he is asleep on the bus ride home and we have to wake him up to get him off the bus.
With those last 3 options, the bus driver would at first bring him back home, but that is too rewarding, so then they'd wait at school but that took too long and the district didn't want to pay them overtime, so now we meet at the bus yard. When they call me to tell me Calvin is still on the bus I have about 25 min to get there giving me time to load the car and head over. It is just right. Then I drive him to school which is sort of a pain but we make the most of it by going to the beach or zoo afterwards.
Remember when Calvin's bus driver hit him? That driver is no longer in special needs! Crazy!
After that incident we had the best driver ever, Kevin! He genuinely loved Calvin (which is tough to do)! and was so great. He'd do a doughnut day or in-n-out day here and there just because he wanted the kids to feel special. He got "out bid" by a more senior driver so we haven't had him this year. We miss him terribly.
Calvin's aid Jeannine has been with us for a long time, over a year. She is so kind. Calvin adores her.
Calvin's current bus driver is fine...neither great nor terrible. We did have an interesting experience today though. She pulled up the house! I opened the door and waved hello as I usually do and then she drove away down the street. Weird?.... I walked to the end of the driveway and as she looped around to pass our house she slowed down and said, "he won't get up I'm taking him back to the lot." WHAT?! I said, "no, I'll get him off the bus." I walked onto the bus and woke him up and got him off the bus. It was funny. He wasn't mad or angry, he was asleep with his head phones in and never heard her stop or tell him to get up. She was completely furious and fuming. Must be an off day....hopefully she isn't losing patience with him....that would be an unfortunate turn of events.
What's funny is Calvin wasn't mad or trying to be difficult, he was sound asleep with his headphones in and his shirt wrapped around his head so he had no idea they had even stopped and tried to get him off the bus.
It is interested how as an observer I can see that this was an incident where Calvin was innocent but somehow managed to get the driver in a fury. I know this happens to me at home. Since he does cause such a rukus so often and puts people on their guard it is easy to be upset with him often and assume he is trying to cause a problem but the trick is slowing down enough in judgment to see what his intent is and working with him to move forward. A galaxy sized amount of patience is required. I'm still working on growing some more!
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.
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