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.

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.

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.

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.

Of note, it has been a full month since this happened. I was too grouchy to write about it at that time.  

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.

special needs basketball

I signed up Calvin for special needs basketball. The first night of the season the UCD mens bball team came to host the clinic. They did a great job.

There was a short news segment on the event. Calvin is #14 and was caught on film several times.

One of the most amazing things about the special education world is the wonderful people we meet who make such a difference!  Most are dedicated parents but also so many members of the community are happy to offer service. Interacting with such wonderful people is perhaps the best part of the special education journey.

concern for siblings

Mean Big Brother (by 8 year old sister)

1 mean brother

2 tared books 

3 hurt sisters

4 broken fones 

5 riped up homework 

My second grader is learning about poetry at school. This is something she wrote on her own during free time at school. Interesting and heartbreaking to see how the poetry brings out some of her concerns and tells so much about our home.  It is tough living in the same house as Calvin. He can be so difficult. We feel for the girls.  Almost all families I run across with extremely difficult children, especially those with major behavior problems do not have younger siblings in the mix. If they do, it is one sibling at the most.  We have 3 little girls in the house and it is a challenge, at times, to keep them safe and comfortable.  We know they are strong girls and hope that what they learn from their experience gives them compassion, understanding and strength to outweigh the bitterness and pain.  I am so glad they have each other. They are such good friends and delight so much in each other. They are easy girls. I know it is a special blessing to have them as daughters.

And for the record, Calvin has torn up probably more like 30 books, has broken 2 phones and ripped up homework of his sisters a handful of times and his own countless times. 

Tonight at FHE, Clare shared a lesson from the Friend called "Bully Busters" which was a cute story about two girls who were feeling bad about a boy who was getting bullied on the bus. Together with one of the mom's they decided to take a special treat to the boy who was getting bullied. The girls took him some lollipops and doorbell ditched them. They watched him excitedly open the door and get the treat. 

After the lesson we asked the kids about the story to make sure they understood the point of the story, (to be compassionate to those who need kindness). Then we asked them if there is anyone they know who needs some extra love if they are having a hard time with a bully. My 5 year old, who is very articulate and doesn't miss a beat said, "well, me and Clare need some extra love because Calvin is always hurting us and yelling at us."  It was said in total innocence, not meaning to place blame on Calvin, but recognizing that he is a bully to them.  They are dear little ones. We try hard to give them extra attention, one on one time and love since we know that they are burdened with extra stress in the home.  People sometimes as me how they can help and I think one of my new answers will be show some extra love to my girls!  My usual answers are "I don't know" or "nothing I'm fine"