something new

Calvin had a seizure this morning at around 6:30am. It was not a grand mal seizure of the type that you see on TV. It was a small seizure about 30 seconds. He lost facial control and his left arm was twitching.  He was ashen white and though conscious, totally unresponsive and unaware of what was going on around him. It was kind of crazy to watch. Even though it was not dramatic, it was kind of scary to know that his brain was going haywire.


After the seizure Calvin came to we asked him if he was okay and he said yes and then went right back to sleep. Dave says people often sleep after seizures since it is such tiring brain activity.


We had thought we should take him to the ER, like any parent would after witnessing their kid have a seizure but Dave thought that before we went in, he should give the neurology resident on call a quick call to ask for advice (I knew being married to a DR. would help us at some point in life!) to ask him what to do. The neurology resident said that  he would call andl schedule an EEG and an appointment with one of the epilipsy specialists in clinic. Since it wasn't a large or dangerous seizure there is no need to go to the ER as there is nothing they would do for him there besides tell us to follow up in the outpatient neurology clinic. Based on the description of the seizure, the time of day (6:15 am as calvin was waking up), and Calvin's age we are told it is most likely Benign Rolandic Epilepsy. 

  http://www.webmd.com/epilepsy/what-is-benign-rolandic-epilepsy

Further testing will confirm or refute this idea and then we will see where to go from there.

One of the tender mercies about this morning is that Dave was with me when Calvin had the seizure. Most mornings I get up and help Calvin get ready for school. Dave either sleeps in, or gets up and goes to basketball, or gets up and goes right to work downstairs.  This morning he got up right around 6:30. Calvin was sleeping on the couch upstairs (he very often gets up in the night and then falls back asleep on the couch upstairs so that was not unusual). I had gotten up at 6:20 and sat next to Calvin reading for a few minutes waiting to see if he'd wake up on his own or if I'd need to wake him up. Then around 6:30 dave came walking into the room and sat down next to us and we were both literally staring at Calvin when he began to stir a bit, sat up part way and then began seizing within just a minute of dave coming into the room and sitting down. It was good to have Dave's medical eyes on him observing him as a Dr. so that he could report what had happened.

This is not Calvin's first seizure, though it is the first one that we recognized as a seizure. About two weeks ago I had a similar experience with Calvin. I went in to wake up Calvin and he started waking up. I asked him something and then he tried to respond but couldn't talk or move for a few seconds. That time it was probably 10 seconds or less and there was no twitching that I observed. I mentioned it to dave and he said it could have been a seizure but at that time he wasn't too concerned. Looking back now I know with 100% certainty that it was a seizure.

There are some other situations that we've had over the last year or so, maybe even two years where Calvin has had something weird going on. I am still not sure if these episodes were seizures or not. I will be interested to see what the Dr. says.  Sometimes Calvin will turn really white, and have trouble talking. He will look really weird and then he'll say, "I'm tired" and lay down and go to sleep. This has happened at home, it has happened when we are out and about. I have learned to recognize it and it is the same every time.  When Calvin does go to sleep, sometimes it is 10 minutes and other times it is an hour. I wonder if these have been little mini seizures he has been having. They have occurred infrequently and irregularly at the most twice in a month but sometimes being spaced out over a few months. I have asked our regular family doc, the behavioral/developmental pediatrician, autism doc, psychologist and psychiatrist about this and everyone of them said nothing (but I'm assuming thought I was crazy) when I described this to them in various appointments over the last year. It has been a medical mystery to me. Like I said, I still don't know if seizures are the answer but we will see if the neurologist thinks so.  

stability

I feel like there isn't a lot to write about our situation these days. Things aren't changing much day by day.  School is going really well for Calvin. He is happy and settled in his new program. He is learning and making progress.  It is pretty unlikely that we'll be making any changes to his school situation in the near future.  There is great hope in his program and in the progress he is showing.

At home and in "regular" life we have the same challenges as always, ridiculous uses of profanity, extreme difficulty in maintaining peace and order and showing ourselves in public without a scene.  Sometimes the feeling of hopelessness is overwhelming.  Other times I do a good job of getting done what I need to get done and then marching through the difficult times with a single shred of dignity to keep me company.  I have noticed that a good walk and a good meal really help my attitude -- missing either of those for more than a day there is a good chance things are not going well.

The cost of an Effective Education/ Cook Talent Show

Last week there was a  talent show at Calvin's school so I went down to watch his music class sing. They did a nice job! I was chatting with one of the moms as we walked to our cars. Her son is the same age as mine and just started at the school a few months ago. I was asking about their journey to get to this school and she told me that they recently moved from out of state and knowing that public school wouldn't work they enrolled in private school.  Since Calvin's tuition is covered by our school district I only had a ballpark guess (20-30K) as to how much tuition is.  Curiosity getting the better of me I asked this Mom plainly, "how much do you pay for tuition?" The answer "Thirty-six thousand dollars per year." I was shocked! That is much more than I had thought. 
I have been stewing over this information for days and several thoughts have dominated.  1. It is a miracle that we got Calvin into this school so quickly and that the district so willingly paid for it. It took only a few months. and we didn't have to  hire an attorney or an advocate. That is pretty rare. 2. How will we ever manage to move to another school? It is so unlikely that a district will pick up Calvin as a student and just offer to send him to a private school?  (When a special education student moves districts they get 30 days of coverage while they are re-evaluated and get a new IEP. A complete set of testing takes place and then they determine placement. I am sure that a district would try to place him in their own special education classes and then the only way to move to non-public school would be to fail out of them as he has here. Who would do that to a child who is stable? And I'm assuming Calvin will be stable 2 years from now . .. .  And if the district doesn't pay, it is in no way possible for us to pay out of pocket such an exorbitant amount of $ for Calvin's schooling and yet, it is not really possible to live without it either.  I will be a tiny bit patient and wait until we know more of our plans before I completely panic, but this definitely weighs heavily on my mind.  3.No wonder this school is good at what they do!

In addition to the school district paying for tuition, they also provide transportation to and from school in the form of a bus that comes to our house and delivers Calvin from our driveway to school and back.    The district also pays for services through the county of mental health at a clinic (at children's hospital) such as therapy, family therapy, counseling, and medication management.

After just a few years of this Calvin's education will exceed the cost of Dave's medical school education. This is mind boggling to me but I am hopeful that just as Dave's education has served him well, so will Calvin's and that in the end he will be ready to face the world with as much hope in a bright future as his Dad had when he put an MD after his name!

1st day of summer and guessing game!

Today is the first day of summer for Clare and Alexey!! Calvin's school continues for another few weeks with his first day of summer being August 1st. I am really looking forward to the time with just the girls at home. We are going to try to do morning jobs and then some fun things together which we wouldn't be able to do with Calvin.  In the afternoons when Calvin gets home we will swim!  I think Calvin will not feel bad about summer school as long as he gets to swim everyday and we also set up some fun activites with friends for some of our afternoons when he is around.

The summer bus schedule will change a bit so Calvin will be home 20 minutes longer in the morning and get home about 45 minutes earlier in the afternoon which will be nice.

This week I found out how much tuition is at Calvin's school. (since the school district is paying I never knew the exact amount before)  Anyone want to guess yearly tuition at our non-public school? 

IEP - a refreshing Non-Public School experience

We had our first IEP meeting at the new school. It was a good meeting. SO MUCH BETTER than any meeting I have been to thus far. There is a reason that there are non-public schools!

The first major and welcome difference between this meeting and other IEP meetings I have attended is that I got a paper copy of everything before I even showed up!  For every single IEP I have had and I have been to a dozen at least, I have asked for a copy to read before the meeting.  I got all kinds of crazy responses to this question such as, "well, it won't be done until right before the meeting so I won't have time to get it to you" to which I replied, "Email me a copy when you are done. Even if it is just a few hours before."  This never happened.  I showed up to every meeting previous to this date having no idea what goals would be proposed and what current levels would be.  It was ridiculous.  Enough ranting, back to the meeting....

We went over Calvin's current levels. For the most part he is at grade level. This in and of itself is kind of a miracle considering he hasn't had consistent schooling since mid-2nd grade.  His behavior is difficult to say the least.  Most of his trouble behavior comes when he is asked to do non-preferred tasks or something else he doesn't want to do.  It is obvious to all that Calvin seeks to be in control of his environment and when he isn't in control he tries his best to regain control by causing enough trouble that those who are in control will give up and let him have his way.  They are doing their best to set up a program for Calvin where he can have some control and yet be enticed to get some work done during the school day.  The amount of individual attenion he is getting is amazing. At his school, there is a unique "program" for each student there so that it is suited to their needs. 

Goals were proposed for the next year addressing Calvin's areas of academic weakness and of course, social skills which he is lacking. The goals are lofty, yet hopefully they are also attainable.

Another welcome difference between this and other IEP meetings is that there was some real conversation! This may sound kind of weird and I'm not sure best how to describe it except to say that at most IEP meetings there is the usual greeting and small talk before the meeting starts. Once the meeting begins the IEP is read over. If  I ask any questions, they are always answered in a very business-like way and always using the IEP language which affords no room for practical inferences and common sense. Everything is always formal and careful since school districts are #1. careful not to give any services except those required by law and #2. do not want to put themselves in danger of giving any information which cannot be addressed within the limits of the IEP and therefore expose themselves to a lawsuit if something is discussed and not followed up within the IEP.  The formality of the conversation within the IEP document makes it difficult to brainstorm ideas and discuss openly the real problems that are happening.

  At our most recent IEP after reviewing the IEP I had several questions. These were addressed in a more normal flow of conversation with a good discussion ensuing. It was so refreshing to talk about concerns and to be able to ask "what do you think?" without receiving fake, guarded answers in return. 

Dave's first and only question was "Do you think you can handle Calvin now that you have seen what he is really like? " To his relief the answer was and enthusiastic "YES!"

In attendance at the IEP meeting were 2 of Calvin's teachers, one administrative person and one Poway Unified School District representative. A PUSD representative comes to all meetings since they want to be sure goals are being met and parents are happy since the district pays for all expenses related to schooling.

I asked the district representative how students  usually move out of the non public setting and back into public school, wondering if it usually takes place at the beginning of the school year. She said they don't have many kids move back to public school.   Calvin is a unique case since he has no learning disabilities and is so capable academically. It will be interesting to see how he progresses over the next couple of years. I assume he will attend this school for at least the next 2 years. At that point we have a lot of unknown since Dave finishes residency at that point and we may be moving.    The school he is currently in has a sister program for middle school with some special needs kids and some main stream kids which serves as a good transition for kids who are getting ready for public school. . I hope that he would be ready for something like that in two years.

We have a long way to go with Calvin but hope that with continued progress in school he will continue to progress academically and will eventually be more healthy and appropriate socially as well.

And it is so nice to think that I probably won't have another IEP meeting for another year!!!  :)

6:55am - a critical moment

6:55 is one of those moments in the day where it really makes or breaks the day for me.  It a major cross roads for how my morning will go.   It can go one of two ways.  The good way or the very bad way.

Here's the good way:
5:30 ish Calvin wakes up and doesn't get into too much trouble until I get up
6:15am - my alarm goes off and I get up to start helping Calvin get ready for school.  I help him get dressed and cook a good breakfast for him. We usually play a game - UNO,Monopoly, Blink, Guess Who - while we eat.  We put Calvin's contact in, find shoes, I pack his lunch.
6:55am- the bus arrives and Calvin hops on the bus with a hug and kiss goodbye. 
Then, I'm FREE!!! :)
7am - if Dave is home I take Tressel for a walk
7:40 - either take a quick shower or wake up the girls depending on what I have going on that morning.

The rest of the morning is so great and so easy with a few little bumps in the road as would be expected with 3 little ones needing to be dressed and fed!

I have been pretty blessed that since we got back from our trip I've had all good days until today. 9 days in a row. Today would have been the 10th day and Calvin would have earned the privilege of using the Kindle Fire on the bus. but he totally melted down this morning and we had a rough morning....

Here is the miserable way mornings sometimes go- this was today

6:15am - my alarm goes off. I go to look for Calvin and see that he has obviously been up a time or two in the night as there are wrappers of food on the counter and on the floor and graffiti on my kitchen counter, white board, calendar or any number of other places.  I find Calvin is in bed. Not sleeping but not in the mood to get up.  I know we are going downhill fast so I put on my happy mom voice and offer to make a great breakfast, play monopoly and remind him that it is the 10th DAY!! 

Calvin sort of tries to pull it together. Get's dressed, gets a contact in but doesn't eat. We play monopoly until 6:55. The bus arrives. we make it out the door, we make it up the driveway., we make it onto the bus. Buuuutttt, we do not make it into our seat. We sit at the bus and whine about how we don't want to go but don't want to go back to day 1 on our kindle fire goal. We freeze. Finally the allotted 5 minutes of waiting has passed and we go inside. I tell Calvin that if he is indeed sick he doesn't have to go to day 1 but can go inside and rest until he is feeling better. 

It is 7am. The crying fits, hysterics, swearing and tantrum begin. The girls each get woken up by the screaming. I feed the girls and get them ready amidst the awful noise.  At one point Calvin does take a 10 minute time out and comes out of his room but obviously not fully in control.  We move forward.

I have to make the decision about which one of my kids will be late. CAlvin's school starts  at 8:30. If I take him first, Clare is late. Her school starts at 8:50.  The drive to CAlvin's school is AT LEAST one hour round trip. Lately I've been taking Clare first because it takes longer to get Calvin to school and I feel bad having her sit in the car for so long in the morning and miss class.

8:25 load the car. Drop of Clare first and then head to Calvin's school. We get there at 9:15 and he says he hates second period. I "wait him out"  (meaning I don't drag him in to the school against his will but wait until he can come in on his own.) Lex and I tour the school with Calvin trailing but not wanting to go to class and start work.

9:45ish- the teachers say I can go and they will block Calvin's access to the door to keep him safe.

10:15 - we arrive home and Jo go straight to bed, she is late for her nap and cried a lot of the way in the car.

There are certainly much worse things that could happen in life but it is sure makes me appreciate my good days to have one go so wrong as it did today. And as luck would have it, I got a call at 2:30 saying Calvin was not safe getting on the bus this afternoon so I had to go get him at the end of the day also!

back to school after vacation

This week my grandpa Cal passed away so we took a trip to Salt Lake City to be with family and attend the funeral. We decided to go spend a few extra days with Grandma  and other family since we were making the trip which resulted in Calvin missing a few days of school.  Since we had a good routine and he was enjoying class we were very sorry that he would have to miss school, but weighing our options decided it would just have to be as it was most important for us to go to Salt Lake.

Great Grandpa Cal and little Calvin 2004

As many grandpas do, our Grandpa Cal has a special place in our heart, of course!  His name is Calvin -- we named our first son, Calvin after him.

Today Calvin went to school again after sleeping in the car from 9pm-1:30am and then being put in bed. His teacher called to say that he had a great day back which was very good news and a small miracle in some ways. We had worried so much that going on vacation would get him out of his good routine.

Also, Calvin did pretty well on vacation which was also a huge blessing. (our vacation to DC in October was much more difficult).  I think the pace of the vacation was easier for Calvin since all we did was sit around and visit. We did do a short tour of BYU and one short tour of temple square but other than that it was very low key which was good for Calvin.

All in all, I am feeling blessed and happy that things are going forward. I can't say things are smooth. It is still kind of crazy, but at least it is survivable and seems to be getting stable.

We have a few goals we are working on.
1. The bus - After Calvin gets 10 days in a row of riding the bus to and from school (so far he has 3), he will get a kindle fire.
2. not swearing - I think we have had a swearing goal ongoing for a couple of years. Currently Calvin works about a week at a time to earn various rewards. Right now he's trying to get a star wars piano book. There was a lot of swearing on the trip so we will probably start fresh and hope to get the swearing under control.   His favorite swear word right now is the H word.  This is preferable to the F and B words which were his favorite for many months!!