I love this speech given my admiral McRaven at the UT graduation this year. Great advice for anyone raising a special needs child or experiencing any kind of challenge, which pretty much includes everyone! Makes me want to be a better person!
http://www.utexas.edu/news/2014/05/16/admiral-mcraven-commencement-speech/
Tuesday, May 27, 2014
Thursday, May 1, 2014
RAK - random act of kindness
Sometimes to get Calvin to come along to an activity I offer to stop and let him get lunch or something. One day last week I stopped to let Calvin get a lunchable. He likes the new lunchables that have a sandwich in them. I can't remember what they are called. We ran in the store, got the lunchable and then ran back out to the car to get on our way. In the car while Calvin as opening the lunchable he bread broke a little bit. This is the end of the world to him. Once it was a little broken he ripped it up and threw it on the ground and cried. (no coping skills). So, rather than have a huge meltdown I decided to just run back in and buy a new one so we could keep moving on with our day. I got a lunchable and ran back into line where we had just been. The checker asked, "oh did you need one more" and I said, "No, we had a little problem." She said, "did you drop it? You can just replace it, no need to pay again." I said, "Thanks but actually the bun ripped a little bit and my son got really upset so he needs a new one. I will just buy it." She said,"Oh, absolutely not! If he is upset you can just take this one. No need to buy it again."
I was so touched by this kindness. I have to replace something that Calvin breaks or doesn't like several times a week. It is such a frustration to me and such a waste of money all the time...Anyway, this small act of kindness really helped me feel like someone cared a little bit.
When I was doing the biggest loser fitness competition a couple of years ago we had personal/spiritual goals in addition to our diet and exercise goals. One of the competitors personal goal was: daily prayer, scriptures, journal and RAK. I had to ask what RAK was, and he told me random act of kindness. I thought to myself at that time, how much better would the world be if we all woke up each day wanting to do a RAK. I'm thankful for those whose RAK's are occasionally directed towards my family!
I was so touched by this kindness. I have to replace something that Calvin breaks or doesn't like several times a week. It is such a frustration to me and such a waste of money all the time...Anyway, this small act of kindness really helped me feel like someone cared a little bit.
When I was doing the biggest loser fitness competition a couple of years ago we had personal/spiritual goals in addition to our diet and exercise goals. One of the competitors personal goal was: daily prayer, scriptures, journal and RAK. I had to ask what RAK was, and he told me random act of kindness. I thought to myself at that time, how much better would the world be if we all woke up each day wanting to do a RAK. I'm thankful for those whose RAK's are occasionally directed towards my family!
Monday, April 28, 2014
things that work for me
This blog doesn't really give a picture of the day in and day out life we live and that is probably fine with me. I feel lucky to survive most days and on a bad day the last thing I want to do is sit down and re live that day by writing it down.
I will say that I reached a point of desperation a few months ago and sought some more help. First, we started with behavior therapy. After we didn't get any help funding this much needed service, the agency offered to give me a reduced pay out of pocket rate of $50/hour. So I decided to give it a try. We're about $800 into this venture and it has helped some. I can't say it's life changing. I would have rather gone to visit my grandma 3 times with that $, but you gotta do what you gotta do. one thing we have done is video recorded our morning routine. It is interesting to re watch those videos and pick up on all the little things going on that you don't really see when it's happening. We spent one day looking at a video with myself and 2 behavior therapists. They gave me some ideas for how I can improve my interaction with Calvin such as, write down things to talk about so that there isn't as much silence, make sure to initiate a conversation every 3 minutes if there is down time and he is behaving appropriately. You might think I'm crazy to not be able to have a conversation with Calvin, but it is more difficult than you might think. For example, let's say Calvin just dumped out a gallon of milk, ripped up a book and called you a *&@)O. Would you maybe have a hard time thinking of something civil to say? I consider my morning a success if I don't' swear back and don't scream at him or anyone else.... let alone talking him about something interesting you learned, or asking how is basketball class is going? So, having prompts to talk about help me have conversation to keep us both distracted.
Some of the videos Calvin has watched too, although at this point it is only mostly positive things. They want to get him used to watching himself and grading himself (positive or negative behavior) on simple things before making him watch something unpleasant. Progress is slow and quite honestly I'm not sure if we will ever really make notable progress, but it helps me to have someone pushing me along and trying to help me with his behavior, who is subjective and professional.
I recently starting paying a 17 year old boy from church to come over and play games/babysit Calvin. He often comes while I am at home and I can get cleaning done or run to the store or read a book. Calvin has some audience control so when Palmer is here, Calvin behaves well. Palmer almost always brings some board games or a wii game from home so it is great entertainment for Calvin. The girls all love Palmer too! Palmer has also babysat all the kids at night on a couple of date nights, which has been nice. Prior to Palmer we had only been able to use family, or go out after Calvin is in bed because we couldn't leave him with any cute little teenage girl! Also, Palmer has a little sister who he can bring over to play with the girls on occasion.
It is nice to have a day that is a little more relaxed.
I also called a friend to ask "what kind of help can I ask for?" She helped me brainstorm a few other ideas. She suggested I ask friends with little girls to let the girls come play to get them out of the house a bit and give them much needed happy activity time! She ended up calling a few friends who were all willing to help. In fact the first two ladies she called both said, "I'll have them one day a week after school, and I am sorry you didn't ask sooner. I wish I would have known Denise needed help." It was so kind of them. I was picturing setting up a play date or two a month but this was way above and beyond. It makes me cry to write about it now. So, two days a week the girls go home with friends to have play dates. That is nice for them. They have lots of energy and need friends to play with but I had recently cut out many of our activities because it is so difficult to go places with Calvin. It is so kind of my friends to let the girls come play. It works out well for them too as the girls they play with were both in need of more play mates as well.
We got a new family with young kids that moved in a few doors down. They have a 9 year old boy, 6 year old girl and 3 year old boy. They are really nice kids. It has been nice having someone closeby for Calvin to play with. He'll walk over and invite the kids over to play and they will play games or wii. It is great. Quite honestly it is probably more valuable than the behavior therapy I pay since it teaches proper behavior and gives motivation to behave appropriately in it's own way.
As we prepare for a big move I want to find a way to continue these types of things and will be looking for neighbors and friends for the kids (as all parents would) and also keeping an eye out for some older boys who might want to earn some extra $ by coming to hang out in our house.
I will say that I reached a point of desperation a few months ago and sought some more help. First, we started with behavior therapy. After we didn't get any help funding this much needed service, the agency offered to give me a reduced pay out of pocket rate of $50/hour. So I decided to give it a try. We're about $800 into this venture and it has helped some. I can't say it's life changing. I would have rather gone to visit my grandma 3 times with that $, but you gotta do what you gotta do. one thing we have done is video recorded our morning routine. It is interesting to re watch those videos and pick up on all the little things going on that you don't really see when it's happening. We spent one day looking at a video with myself and 2 behavior therapists. They gave me some ideas for how I can improve my interaction with Calvin such as, write down things to talk about so that there isn't as much silence, make sure to initiate a conversation every 3 minutes if there is down time and he is behaving appropriately. You might think I'm crazy to not be able to have a conversation with Calvin, but it is more difficult than you might think. For example, let's say Calvin just dumped out a gallon of milk, ripped up a book and called you a *&@)O. Would you maybe have a hard time thinking of something civil to say? I consider my morning a success if I don't' swear back and don't scream at him or anyone else.... let alone talking him about something interesting you learned, or asking how is basketball class is going? So, having prompts to talk about help me have conversation to keep us both distracted.
Some of the videos Calvin has watched too, although at this point it is only mostly positive things. They want to get him used to watching himself and grading himself (positive or negative behavior) on simple things before making him watch something unpleasant. Progress is slow and quite honestly I'm not sure if we will ever really make notable progress, but it helps me to have someone pushing me along and trying to help me with his behavior, who is subjective and professional.
I recently starting paying a 17 year old boy from church to come over and play games/babysit Calvin. He often comes while I am at home and I can get cleaning done or run to the store or read a book. Calvin has some audience control so when Palmer is here, Calvin behaves well. Palmer almost always brings some board games or a wii game from home so it is great entertainment for Calvin. The girls all love Palmer too! Palmer has also babysat all the kids at night on a couple of date nights, which has been nice. Prior to Palmer we had only been able to use family, or go out after Calvin is in bed because we couldn't leave him with any cute little teenage girl! Also, Palmer has a little sister who he can bring over to play with the girls on occasion.
It is nice to have a day that is a little more relaxed.
I also called a friend to ask "what kind of help can I ask for?" She helped me brainstorm a few other ideas. She suggested I ask friends with little girls to let the girls come play to get them out of the house a bit and give them much needed happy activity time! She ended up calling a few friends who were all willing to help. In fact the first two ladies she called both said, "I'll have them one day a week after school, and I am sorry you didn't ask sooner. I wish I would have known Denise needed help." It was so kind of them. I was picturing setting up a play date or two a month but this was way above and beyond. It makes me cry to write about it now. So, two days a week the girls go home with friends to have play dates. That is nice for them. They have lots of energy and need friends to play with but I had recently cut out many of our activities because it is so difficult to go places with Calvin. It is so kind of my friends to let the girls come play. It works out well for them too as the girls they play with were both in need of more play mates as well.
We got a new family with young kids that moved in a few doors down. They have a 9 year old boy, 6 year old girl and 3 year old boy. They are really nice kids. It has been nice having someone closeby for Calvin to play with. He'll walk over and invite the kids over to play and they will play games or wii. It is great. Quite honestly it is probably more valuable than the behavior therapy I pay since it teaches proper behavior and gives motivation to behave appropriately in it's own way.
As we prepare for a big move I want to find a way to continue these types of things and will be looking for neighbors and friends for the kids (as all parents would) and also keeping an eye out for some older boys who might want to earn some extra $ by coming to hang out in our house.
Wednesday, March 12, 2014
blessed
We had our follow up with neurology today. We love our neurologist. If you have epilepsy and live in San Diego you must see Dr. Nespeca. He is worth the wait. He is quite possibly my favorite dr. that we see for anyone in the family.
Calvin hasn't had any seizures since he was initially diagnosed with epilepsy a year and half ago. We have not advanced the dose of epilepsy medication for 9 months and yet Calvin has remained seizure free. This is pretty amazing considering the abnormality in his brain as seen on the MRI. We are blessed to have been seizure free for so long. We will continue on this same dose until Calvin does have a seizure and then move the dose forward at that time.
Calvin hasn't had any seizures since he was initially diagnosed with epilepsy a year and half ago. We have not advanced the dose of epilepsy medication for 9 months and yet Calvin has remained seizure free. This is pretty amazing considering the abnormality in his brain as seen on the MRI. We are blessed to have been seizure free for so long. We will continue on this same dose until Calvin does have a seizure and then move the dose forward at that time.
Tuesday, March 11, 2014
progress
Today we had Calvin's annual IEP. I was blown away by one section which reported the progress we have seen since Calvin started at cook education center 2 years ago.
"during a 49 day period prior to 3/21/12 Calvin engaged in hitting 136 times, throwing 174 times, disrupting others by making noises 275 times, property destruction 23 times, defiance 70% of the time and attempted urination in the classroom 4 times."
WOWZERS! Life was crazy.
"Calvin has had 2 incidents of problem behavior since the beginning of the 2013-2014 school year"
This is AMAZING. This school has blessed our life so much. We have only been there 2 years and I had not realized how much progress we have made. We still have much progress to make before Calvin would be ready for a less restrictive environment, but it is so great that he is a "model student" in his current setting.
Other thoughts....either we are super blessed that he has come to this point so that we are in a position to move him to a new school in Houston OR we are crazy to even think about making a change when we've come so far and have so far to fall. I am trying to move forward with faith that it is the former.
Now that our IEP is up to date we are ready for the next steps in our process. First, I can fax it to a couple of Houston school districts and see what placement they would recommend for Calvin and then we can go to Houston and see the schools that are a possibility for us. Once again, I'm hoping things look good and we can have a smooth transition to a great new school that will be just right for Calvin.
"during a 49 day period prior to 3/21/12 Calvin engaged in hitting 136 times, throwing 174 times, disrupting others by making noises 275 times, property destruction 23 times, defiance 70% of the time and attempted urination in the classroom 4 times."
WOWZERS! Life was crazy.
"Calvin has had 2 incidents of problem behavior since the beginning of the 2013-2014 school year"
This is AMAZING. This school has blessed our life so much. We have only been there 2 years and I had not realized how much progress we have made. We still have much progress to make before Calvin would be ready for a less restrictive environment, but it is so great that he is a "model student" in his current setting.
Other thoughts....either we are super blessed that he has come to this point so that we are in a position to move him to a new school in Houston OR we are crazy to even think about making a change when we've come so far and have so far to fall. I am trying to move forward with faith that it is the former.
Now that our IEP is up to date we are ready for the next steps in our process. First, I can fax it to a couple of Houston school districts and see what placement they would recommend for Calvin and then we can go to Houston and see the schools that are a possibility for us. Once again, I'm hoping things look good and we can have a smooth transition to a great new school that will be just right for Calvin.
Thursday, February 27, 2014
missed meds
I am usually close to perfect in givig Calvin his meds morning and night. He takes a total of 5 medications. In the morning he takes 3 meds (total of 6 pills) and at night he takes 3 meds (total of 6 pills). (the epilepsy meds are morning AND night, the others are EITHER morning or night. Calvin is sometimes not perfect in taking them - hiding them under the table, throwing them into the grass, dumping them down the sink. Ahh so aggravating. Anyway, one day this week I COMPLETELY FORGOT to give his meds. I blame the overly tired and stressed self due to other kids being sick. Anyway, he had an okay day that day so I though I got by pretty well and felt super lucky. And I found myself doubting why he is taking so much medicine to begin with......
The next day was the fall out. As often happens, it takes a day to catch up with him. It was one of the roughest days we've had in a while. As I was sweeping the kitchen floor that afternoon I noticed one of his pills on the floor. Meaning, he had missed one of the meds 2 days in a row. Luckily for me it was not seizure medicine or one that you have to take daily to stay safe and it was perfectly fine from a general health standpoint to miss 2 days. However, from a sanity standpoint it was a disaster.
Looking back I feel really bad for him that he was so completely out of whack for a couple of days and probably not feeling his best. Between the two of us, I am not sure who came more unglued. I am sorry to say that I was beside myself with frustration and not nearly as patient as I should have been.
However, the day after the rough day* Calvin cleaned up one of the rooms he messed up which is a 1st. I was very proud of him and impressed that he was willing to do that.
* Calvin messed up every room in the house in a matter of minutes. I have other pics on my phone too but I'm not sure how to put those on the computer yet! suffice it to say he dumped a gallon of milk, gallon and gatorate on the floor and tore up a book on the kitchen counter in addition to what is shown below.
The next day was the fall out. As often happens, it takes a day to catch up with him. It was one of the roughest days we've had in a while. As I was sweeping the kitchen floor that afternoon I noticed one of his pills on the floor. Meaning, he had missed one of the meds 2 days in a row. Luckily for me it was not seizure medicine or one that you have to take daily to stay safe and it was perfectly fine from a general health standpoint to miss 2 days. However, from a sanity standpoint it was a disaster.
Looking back I feel really bad for him that he was so completely out of whack for a couple of days and probably not feeling his best. Between the two of us, I am not sure who came more unglued. I am sorry to say that I was beside myself with frustration and not nearly as patient as I should have been.
However, the day after the rough day* Calvin cleaned up one of the rooms he messed up which is a 1st. I was very proud of him and impressed that he was willing to do that.
* Calvin messed up every room in the house in a matter of minutes. I have other pics on my phone too but I'm not sure how to put those on the computer yet! suffice it to say he dumped a gallon of milk, gallon and gatorate on the floor and tore up a book on the kitchen counter in addition to what is shown below.
Of note, it has been a full month since this happened. I was too grouchy to write about it at that time.
Tuesday, February 11, 2014
birthday
Yesterday was Calvin's 11th birthday.
It's kinda crazy to see him at this age -11, where he'd be
starting middle school, playing and instrument at school, being in the crossing
guard, etc. He is so behind where other kids are. With handicapped kids
birthdays totally stink since it is a reminder of how they are not actually
growing the way they should, but the years still pass by. That's why we just
live day by day.
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