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.
Tuesday, November 12, 2013
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.
Monday, September 23, 2013
if you can't beat 'em, join 'em
For a couple of years I have been somewhat bitter about high functioning autistic children who receive tons of services, are able to function in mainstream classes and are making positive progress with exceptional support and help while I have watched my own child make backwards progress over the course of 3 years move from mainstream school to a position where he will probably never be in mainstream school again. I have tried to get him supports and services he needs but he has been denied services by insurance and regional center.
Most people who know Calvin assume he is autistic. When we are out in public and he is on the ground crying or throwing a fit we say, "oh, don't worry, he'll be fine, he is autistic" and then people say, "oh, I understand." Calvin goes to a school with a population made up of more than 80% autistic students, all of whom are getting great therapy in their homes to support their difficult behaviors.
Well, after trying for years to get what I need for Calvin through the avenues I knew I finally decided that the only way to help him is to have him formally diagnosed as autistic as well. While his true disability stems from his brain damage, he shares enough characteristics with the autistic population that he easily fits within the DSM criteria for a diagnosis. Last week he was diagnosed with autism by a psychiatrist. Now we will (hopefully) move forward with behavior therapy in our home and maybe even re apply to the regional center in a couple of years.
Most people who know Calvin assume he is autistic. When we are out in public and he is on the ground crying or throwing a fit we say, "oh, don't worry, he'll be fine, he is autistic" and then people say, "oh, I understand." Calvin goes to a school with a population made up of more than 80% autistic students, all of whom are getting great therapy in their homes to support their difficult behaviors.
Well, after trying for years to get what I need for Calvin through the avenues I knew I finally decided that the only way to help him is to have him formally diagnosed as autistic as well. While his true disability stems from his brain damage, he shares enough characteristics with the autistic population that he easily fits within the DSM criteria for a diagnosis. Last week he was diagnosed with autism by a psychiatrist. Now we will (hopefully) move forward with behavior therapy in our home and maybe even re apply to the regional center in a couple of years.
Thursday, September 19, 2013
long week
Calvin has a new trick. He falls asleep on the bus ride to school and then is too sleepy to wake up, or is pretending to be too asleep to wake up. I'm not sure. He was legitimately snoring and drooling on a couple of occasions..... who knows
This week so far 4/4 days I have driven down to his school to get him off the bus, or on one day because he wouldn't get on the bus at home so I drove him in. I also did this 2 days last week. If you're wondering if my house cleans itself or if the groceries shop for themselves while I am gone, the answer is no. It is a 9-noon affair each day. Sometimes it is 9-noon in and of itself if I get there and he refuses to go in to school; then I just sit in the car and wait for him to decide to go to school. Sometimes, the 9-noon includes my recovery time afterwards such as walking the beach which is what I have found to be the best way to make the most of driving 30 min down to san diego and not being angry about missing my entire morning.
One of the medications Calvin is on makes him sleepy. We have now lowered the dose twice. So, now we're back to a dose that isn't even effective. I might try going up a 1/2 dose in a couple of days and see if that is any better.
Could be worse. I see so many people with many more serious troubles than I have and can't help but feel grateful for what I have. I was talking to a friend this week who has had severe trials in her life. She said she thinks if we all put a shoe in the middle (representing our trials) there wouldn't be many of us that would want to take somebody else's burden. Each of us becomes accustomed to the kind of experience we are going through even if it is hard.
There is a 3 part video on mormon messages here that is very good. It describes how we learn to rely on the Lord for our daily needs. Elder D. Todd Christofferson shares a story when he was going through a personal trial and had to completely rely on the Lord to help him get by day by day. Without this experience he would not have learned this lesson.
I sometimes wish I could be more like those described in Alma 32, "and blessed are those who are humble without being compelled to be humble." I guess I am one of the more stubborn ones that needs more reminders to be humble.
This week so far 4/4 days I have driven down to his school to get him off the bus, or on one day because he wouldn't get on the bus at home so I drove him in. I also did this 2 days last week. If you're wondering if my house cleans itself or if the groceries shop for themselves while I am gone, the answer is no. It is a 9-noon affair each day. Sometimes it is 9-noon in and of itself if I get there and he refuses to go in to school; then I just sit in the car and wait for him to decide to go to school. Sometimes, the 9-noon includes my recovery time afterwards such as walking the beach which is what I have found to be the best way to make the most of driving 30 min down to san diego and not being angry about missing my entire morning.
One of the medications Calvin is on makes him sleepy. We have now lowered the dose twice. So, now we're back to a dose that isn't even effective. I might try going up a 1/2 dose in a couple of days and see if that is any better.
Could be worse. I see so many people with many more serious troubles than I have and can't help but feel grateful for what I have. I was talking to a friend this week who has had severe trials in her life. She said she thinks if we all put a shoe in the middle (representing our trials) there wouldn't be many of us that would want to take somebody else's burden. Each of us becomes accustomed to the kind of experience we are going through even if it is hard.
There is a 3 part video on mormon messages here that is very good. It describes how we learn to rely on the Lord for our daily needs. Elder D. Todd Christofferson shares a story when he was going through a personal trial and had to completely rely on the Lord to help him get by day by day. Without this experience he would not have learned this lesson.
I sometimes wish I could be more like those described in Alma 32, "and blessed are those who are humble without being compelled to be humble." I guess I am one of the more stubborn ones that needs more reminders to be humble.
Thursday, September 12, 2013
children's hospital
Today we had a regular follow up visit in neurology clinic. I am always so humbled when I go to the Children's Hospital. There are so many families with children so severely handicapped. I find myself feeling extremely grateful for the blessings that I have and feel a prick in my heart for ever thinking that my life is too hard. I look at other parents who are FULL time caretakers. They don't have time for anything else, I see other parents of children who are terminally ill, I see parents whose children never speak, never walk, never progress past diapers.
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