Friday, January 29, 2016

school decisions

Looks like we will be staying at Cook.

At the Cook Education Center there are several programs. There is the primary program with kids K-7th grade (ish), which is where Calvin is now.  There is a secondary program with kids 7-12th grade.  Urban Skills Center (USC) has kids ages 18-22. Also at the school is Children's Workshop with a different population of kids age 15-22. Each of these programs runs independent from each other, with limited interaction between the groups, but they do share a campus so they see each other, plus they may ride the bus together, if they are coming from the same district.

Calvin will move to the secondary program which will allow him to have more challenging academic classes but still have a lot of support, which he obviously needs.   The secondary program has kids 13-18 (once they reach graduation age they move next door to USC - Urban Skills Center, either for life skills, employment training, or to finish diploma work). There are 60 kids in the secondary program which will give Calvin lots of people to interact with and a big group to find some friends. Some of the kids in the secondary program Calvin already knows so he feels comfortable with the transition.  Calvin is happy to stay at Cook where he knows a lot of people, and also so he can continue with Karate. Right now he has a blue belt and is doing well in class.  He really likes Sensei Frank and what he is accomplishing in Karate class.

I am now know quite a bit about the non public schools in San Diego which is important for me to make the best decision. And would be super useful to anyone else looking for a non public school in town, if I ever run across anyone who needs that information. Slim chance, but you  never know!

In the next couple of years we may look at moving Calvin back to public school into one of the classes in the district. I don't know a lot about those classes yet. I tried to see the one that would be most appropriate but the district would not let me, saying they need to protect student privacy and not have parents come and look at the class unless we are considering a placement change right now.  While I understand the need to protect privacy I also think it's ridiculous to not allow me to look at the classroom because otherwise we will never know if Calvin could move back to public school.  That being said, the district is paying his tuition and if they want to continue to do so I suppose I should just be grateful that they are happy to do so, but it seems dumb to me that they'd want to block progress.

Tuesday, January 26, 2016

perspective

It's not very often I run across someone with a similar life to mine.  Yesterday I met someone, she is was the house guest of our neighbor, and she has a son that is kind of like Calvin. Actually a super lot like Calvin.  It was amazing to connect with this woman who has had almost double the life experience I have (her son is almost 2x older than Calvin). She is an amazing mother who has worked hard, suffered a lot, and put her heart and soul into her family. She has faith and courage  and love.  One thing she said is that even though it has been hard, it is amazing to look back over how far they have come from 5 or 10 or even 17 years ago.  I hope  5 or 10 or 17 years from now I can look back and see that we have made progress, that we are in a good place and that I'm happy with how far we've come and have some hope for the future.

I feel like we are in a hard spot in our journey. It's been long enough that I am tired. The newness has worn off, the hope that something new is going to come along, in terms of diagnosis and treatment, is gone. Now we are left with a long stretch of life in front of us and I'm not sure where it's going.  We are not reaching the same milestones as other kids that are about to turn 13 in school, social, or any other setting.   I am in a rut with my mothering and my patience.   Talking to this other mother who has walked a similar path for even longer made me realize that there are small and large  victories that need to be appreciated.  The grief of always being off the path of "normal" kids and missing major developmental milestones is real and it is hard and it will probably never go away. but instead of embracing that pain, I can celebrate the small victories and changes we see which move us in a positive direction.

I recently read the book Edurance by Alfred Lansing about Shakeltons journey to Antarctica. I highly recommend the book! There was one part of the book that really resonated with me in relation to my journey in parenting Calvin.  One of the most amazing aspects of the expedition was that the crew stayed so positive and morale was generally very good, even though they were in very real danger for most of the trip. I think part of this was attributed to the fact that they did have confidence in themselves, did believe that they would eventually be rescued, but they kept that hope at bay by keeping that hope in the future and not settling on a date they thought they'd be rescued or a specific distance they would cover in a day. They just always had hope that they would eventually be rescued.  There were a couple of points in the book where the men got very excited about the prospect of hitting land, but then the opportunity  passed them by. The depression that set in following these setbacks was almost crippling. They learned from this experience to stay hopeful and have faith that things would work out but not to set terms and dates for specific achievements.  Near the end of the book part of the team had gone ahead to get help and most of the men had stayed behind waiting to be rescued. It was torture to just sit an wait knowing that if the rescue party did not make it back they would definitely die.  They had calculated how long the rescue should take and started planning for the rescue to come within a few weeks, waiting with great anticipation. As the date they had planned on for the rescue came  they realized they would be completely crushed if the rescue did not come in time, they instead set a date to hope for the rescue to come several months into the future.

I have noticed this same thing happen in my journey with Calvin.  Whenever I set up comparisons, milestones I hope will happen, or progress I hope to see, I am extremely disappointed as that dreamed of progress passes us by. I try not to think about birthdays that come and go, what grade he's in, what he could have been doing by this point, what life we are missing out on.  We just live day by day and hope that each day is a good one where we learn a little more and float in a good direction.

Looking back from 2-4 years ago when we were really in a tough time, there are some great improvements.  Calvin sleeps really well. He can stay home along sometimes.   His behavior at school is good. He has a great school where he is happy and has friends. He likes his karate class at school and works hard in that and is proud of his progress. He can do legos for 8 hours straight.  (If I could afford it, I'd have legos for him to do every day).  We have good drs.  We have good insurance so we are not in financial ruin.  (many families with kids like calvin have very serious financial problems. so far, we have been very lucky in that regard).  Our insurance pays for our medications.  (If not, we'd be paying probably 2-3K/month for them). Calvin hasn't had a seizure in years.   We have lots of good things going for us.

Circling back to my new friend. She had a few suggestions of things she did well or wished she had done better for her family along their journey when kids were younger.  Make therapy more available to the siblings.  Talk openly with the other kids about the struggles you face.  Surround myself with great women.






Friday, January 15, 2016

trying new schools

Tues/Wed Calvin attended Sierra school. The visit went very well. He enjoyed the school, made new friends and did great. They enjoyed having him there. The staff is very nice, his teacher would be a young guy (late 20's) which is a great fit for Calvin.  When I picked Calvin up after the first day of his trial he said, "I liked it but I didn't get enough breaks" and "I just want to stay at Cook (his current school)"

Since then Sierra has called and said his visit went very well. They feel they can challenge him academically, they were impressed with some of his abilities, especially in science where he can do work at above grade level. They also feel they can meet his needs socially and emotionally. He seemed to get along well with the other kids and made new friends quickly. He was motivated by the point system they have there even though he has yet to see all the things he could do with those points.

Th/Fri was scheduled to be at Excelsior. Thurs morning we had a rough start getting out of the house in the morning and we arrived to school with Calvin in no mood to go in. Dave was going to work about the same time we were going to school and he threatened that he'd come over and get Calvin if he didn't cooperate. I think that's why he ended up going into school after about 30 minutes in the car whining about various things.  About 30 minutes after Calvin arrived at school I got a call from the school saying Calvin had had a couple of incidents they weren't sure what to do with. First, the teacher tried to introduce him to another student and he said, "shut up". A few minutes later he was given a book for some work and Calvin threw the book on the floor. They didn't know what to do with him since they had only known him for a few minutes. So, I decided to go back to school and get him.  It did not need to be spoken that he is not a good fit there. He didn't like it, they didn't like having him.

When Calvin got back in the car I said, did you do those things because you knew they would call me and you would  get to come home?  he said, "hard to explain but kind of". I told him that next time he can just ask to call me. He said, "do you think they would have let me call?" I really don't know that they would have, but he should at least consider a more reasonable option than behaving bad enough that they will kick him out and call me.

So now we have the option to keep him at Cook school, where he could move to a secondary program on the same campus, but with older kids, or we can move him to Sierra. I am waiting on a school visit to Cook's secondary program (even thought Calvin has been there 5 years I have never seen the secondary program in action aside from a glimpse of PE or karate when I come and go).  I am also hoping Dave can get over to Sierra and take a look before we make our decision. I have made two appointments for him so far but both times he's had to cancel last minute.