Embarrassing scenes in public

I was looking over this blog and noticed that I have never written about one of my embarrassing public scenes with Calvin. They happen regularly but for some reason I never write about them here.  Probably because after being embarrassed in public I don't see any need to re-live those moments and also I sort of feel like it is just complaining and like my cousin says, "there is nothing so bad that complaining about it doesn't make it worse." In spite of myself I will record at least one of these moments for my own records.

Today ....

Dave and the girls went out of town to visit some cousins so I was home with just calvin and the baby!  I decided to take Calvin on a mother/son date to a  place of his choice. He chose a breakfast place.  He ordered what he wanted but when it came he said he changed his mind and wanted something else. I waited him out while I ate to see if he would just eat what he had ordered. Sometimes if he is chatty and in a good mood he will be flexible and go with the flow.  I finished eating and Calvin was still pouty and upset because he wanted different food. I wasn't sure if it was a good idea to order more since he might not have liked that either and the baby was starting to be to squirmy to stay in her seat.   We were still waiting for our receipt and a box for his food he didn't eat.

Calvin opened a sugar packet and dumped the sugar on the floor. The lady sitting behind him about had a fit watching him do that. Within a few minutes he tore up our receipt and threw that on the floor too. meanwhile I was trying to map out an escape plan. I had a baby to carry, plus Calvin to carry, plus my food. Not possible. I paid my bill and looked around the room for who I would ask to  help me.  Then Calvin picked up the ketchup and started squirting it on the floor and the lady behind him said "NO!!!! Don't do that!"  I told her she wouldn't help him by getting upset and cleaned up the ketchup. Then I asked this lady if she would walk me to my car and hold baby Jo for me. She was not eating anyway -- she was talking about what she was seeing!   She  was a little surprised but reluctantly agreed. I handed Jo to this stranger and Jo started crying.  I tried to escort Calvin out but he threw himself on the floor. Some guy offered to pick up Calvin but Calvin is 85 lbs and kicking and difficult and I didn't want this guy to get hurt.  I tried to talk Calvin into cooperating  but to no avail. Finally I let this man help me with Calvin. He helped drag Calvin out of the restaurant  As we walked past the front desk of the restaurant, Calvin tore down their Christmas tinsel across the front desk.  We made it to the car and luckily Calvin hopped in and started honking the horn instead of trying to run away or do something else crazy.  I took Jo back and loaded her in as well.  Both of my helpers were flustered but compassionate towards me.  

So much for stopping at the store on the way home to get groceries for dinner tomorrow....

This kind of things happens frequently.  For sure not every time we go somewhere but I wouldn't call it a rare occurrence. Fortunately with Calvin in school every day I can do most things I need to do without him. Also, sometimes I can see that he is in no shape for going anywhere and cancel plans or modify plans to prevent a huge scene.

Now that Calvin is so big I can't really handle him by myself, especially with 3 other kids to juggle, one of them being a baby who is a total mama's girl. This makes things dicey. Lucky for me, Dave has been home a lot this year so I have gotten away with leaving Calvin at home with Dave, sending Calvin out with Dave or having Dave stop for me at the store or whatever I couldn't do. It worries me a little bit that starting next summer Dave will be super busy and will disappear from the picture of every day life.   

surgery pics and billing errors

Dave as a parent gowning up pre-op because we knew he'd need to "escort" Calvin to the OR.

Immediately post op in the PACU (post anesthesia care unit). The head wrap was a bit of a problem because when Calvin woke up it was TOO TIGHT and he screamed and fussed until we eventually took it off. The healing was still fine, but it just meant more swelling.

After the longest day on record in the PACU we finally left around 4:30. Calvin was feeling pretty good and looking good too.

By the time he got home he was already wiped out.

Day 1 post op in the morning - not too swollen, but got more swollen as the day went on.

Day one post op was Clare's birthday! I'm so glad we had her party a week early. I would not have been up to having a party that day.

By evening, the swelling was pretty bad. But at least his eyes never got swollen shut.

Days 2 and 3 were spent resting and playing wii!

By Friday we were able to go to the museum for an hour or two.

CAlvin has two small incisions just behind the hair line on his left side. The stitches are still in and will fall out on their own. It is taking a while for them to come out. Probably because Calvin showers so infrequently :)

Not sure yet if I think it was worth it. The cosmetic change is minimal and does not correct the asymmetry.  If I had it to do over again I am sure I would have done the same thing.

Last Saturday I got a bill for $6770 from the hospital AFTER the insurance paid their portion. I totally freaked out. Our dr. had told us everything would be covered by insurance. Since it was a Saturday I couldn't call the hospital and see if it was an error.  I was worried sick all weekend. Finally Monday morning I was able to call and the hospital person said, "oh, it looks like we need to adjust your account. You should only owe $95. I'll check with one person and get back to you." He called me back an hour later and sure enough I owe $95 not $6770. I was very relieved and also FURIOUS! What if I would have just paid the money with out calling. Would they have just stolen that money from me? It makes me so angry that hospitals over charge for everything and then wait for insurance and patients to correct billing errors.

pics

blogger won't let me post pictures. says I hit the quota! Not likely since I have never posted any pictures! Hopefully they'll resolve the issue soon!

Surgery day!

Oh what a day! It was much much crazier than I expected. I guess the dr. made it sound so simple that when I pictured surgery I hardly even pictured blood!

Anyway, the case is called endoscopic secondary craniofacial reconstruction.

Here's how our day went:

5:30 am. wake up calvin to take his epilepsy meds and get ready to go

 6:45am Dave arrived with Calvin at the hospital and did all the check in stuff. Calvin was not cooperative for any of that.  Bad sign. Especially when Dave was with him. He usually does really well with dave.  However, we had just had the worst weekend I can remember. Absolutely awful so it was a tough beginning under any circumstances.
I stayed home to get the girls settled in with my friend who came over to watch them, bless her!

7:45 I arrive just in time to see the surgeon and anesthesiologist come by and say hi/answer questions.

8:10 Dave escorts Calvin to OR - he is completely uncooperative and combative as Dave drags him back to the room.  He is restrained and crying as he falls asleep with the mask.

8:15 Dave and I go get food while we wait.

9ish Dr. Cohen comes out to meet us in the lobby to say the surgery went really well.  Dave puts on his white coat to go round on a couple of patients he operated on yesterday.

10ish We are invited back to see Calvin in the PACU. His head is wrapped.  He had started to stir a bit and was upset so they gave him something - percoset maybe- to help him rest again so he is pretty sound asleep.

10:30 Calvin wakes up very upset. Screaming about his head hurting and how the wrap is too tight. He tries to pull out iv's and pull off the head wrapping. They give him demoral. Dave requests no more demoral so then they give him versed.  Then he is screaming about pain so they give him morphine.  Then they give him morphine.  It freaked me out to see them giving him so much medicine!   Since he is screaming and so mad we move to a private room.  While wrestling with  Calvin (I was holding down one side and Dave was holding the other) I start to feel sick with worry about how we made the wrong choice doing an elective procedure on him and that the complications of him messing up his wound or causing injury to his head will be way worse than if we never even did the surgery. I am so worried sick that I start to black out. I tell dave to hold Calvin's arm so that I can sit before I pass out.  I lay down on the floor and the nurses take my spot.  for the next 30 minutes I am useless. I sit in a chair at the foot of Calvin's bed and put my head down. Every few minutes I ask Dave if I look okay yet and he says no!! HA! what a circus!   When I finally feel better I go to McDonalds to get some food for Calvin hoping that if he gets something in his system he'll become rational again.  When I get back to the room he has fallen asleep in dave's lap (where dave had been holding to restrain him from pulling out his IV). By now Calvin has so many drugs in his system now he is out cold. First he sleeps on dave's lap for an hour but then dave moves him back to his bed where he sleeps for the next several hours.

Oh, I should say that at some point in all this they decided to take off the headdress knowing that there was no way it would be on his head for 24 hours as instructed.

2pm Calvin wakes up in a lot of pain again.We give him tylenol with coedine and try  to give him food/drink but he takes about 1 sip of gatorate and  one bite of cracker and then falls asleep again. .  He sleeps again and wakes up an hour later nauseated but on an empty stomach has nothing to throw up.

3pm Wakes up dry heaving again and then right back to sleep.

Around 4:30 we decided we should try to start waking him to see if he would rouse enough for us to get home. We are setting a world record for length of stay in the PACU.  We wake up Calvin and he is cheerful and ready to go home! HURRAY!  He eats a little bit of his happy meal from hours before (yuck) and is super excited about leaving. We get ready and put him in a wheel chair and stop by the cafeteria to get the worlds best cookies.

4:45 heading home

He rides home with Dave and I drive myself.   By the time Dave/Calvin reach the pharmacy in our neighborhood Calvin is throwing up his food. He arrives home at 5:45  back asleep and dave carries him in to the couch.

8:30 awake and hungry. He takes a few sips of gatorate and a few bites of banana bread and gets 2 pills down (antibiotic and tylenol). He still has 4 pills to take so hopefully he'll  keep the first two down and then wake in another hour and be able to take those (epilepsy meds and tenex for sleep (not that he needs it to sleep tonight but it is one you can't stop taking cold turkey)).

9:30. I am pooped! What a day! It was so much more stressful and strenuous than I thought.  Last night I slept on the couch so that if he got up in the night I'd hear him and stop him from eating before surgery. Tonight I'll probably sleep in his room so that I am near him if he needs anything.

Calvin has had general anesthesia several times before and has never had such a reaction as today. It usually takes an hour or two for him to wake up and then he's ready ot have a snack and leave for home. Plus, we usually stop for a big breakfast on the way home and he's never had a problem keeping food down. I think it was different today since he got so many meds after waking up + he does have some pain and I know that contributes to overall feeling.   I hope tomorrow he feels better and is ready to start eating a little bit so he has enough energy to get around. He is too tired to even walk to the bathroom right now.

PS.  Calvin woke up at 11pm to throw up more!  poor child! After this episode, he finally felt feeling better. After having slept ALL DAY he was wide awake and chipper and ready to hang out!  Dave stayed up with him from 11pm-2am watching Spiderman and playing Monopoly. At 2 I got up with him and watched Phineaus and Ferb and he fell asleep on the couch around 3. I made a bed on the other couch and slept with him 'til around 5:30. He was awake and feeling well so I went back to bed in my own bed for a couple of hours before the day began.

Day 1 post op. Calvin has been doing really well today. He feels good. No more sore throat or nausea. He has eaten a few meals and had a good day of TV, nintendo and a few errands when he felt up to it. He also got a good nap in today! He woke up a little swollen and has continued to swell throughout the day. Now (bedtime) he is so swollen his eyes are just little slits. Hopefully the worst is tonight so that he isn't swollen shut when he wakes up in the morning. Since he didn't keep on his head dress he has more swelling than the Dr. would have anticipated but it won't interfere with the outcome, it will just take longer to heal. He is taking tylenol around the clock and that is plenty to help him not have a headache.

Another PS. Dave will have to read this and edit drug names to make sure what I have is accurate.
I will also add a few pics

surgery this week

  Ever since we moved to SD 6 years ago we have had our follow up craniosynostosis visits with Dr. Cohen once a year or every other year.  Dr. Cohen has told us that he thought the brow revision would be a good idea so this has been something that has been on our mind for some time.  Calvin is scheduled for surgery Tues to revise his brow. His brow is very recessed over the left eye making for an asymmetrical face. Everyone who looks at Calvin thinks he looks just fine. However, the asymmetry is magnified and very profound when looking at Calvin in a mirror. We thought it would be best to do what we can to help him feel good about the way he looks and views himself.  We also thought it would be best to do this procedure while we are here in SD so Dr. Cohen could do the operation for us. He is one of the best in the world at cranio facial plastics.  Surgery is Tues morning 8am. We scheduled it about 8 months ago, holding this spot during thanksgiving week so Calvin wouldn't have to miss much school since the kids are already out on Thanksgiving break.

To entice Calvin to cooperate at dr. appointments we always give him some kind of treat afterwards. For easy appointments it is a slurpee, a candy or something simple like lunch at In-N-Out. I think Dave has grown to expect lunch at In-N-Out for himself if he comes along also.  For larger appointments, especially if Calvin needs to cooperate for lengthy testing or has to skip meals in preparation for the appointment, we usually offer him something more valuable such as trip to the store to let him pick a toy (within a set price range) .  Calvin recently had an MRI as part of a study for UCSD. He laid perfectly still for 45 minutes in the MRI machine (miracle of miracles) to earn himself a monopoly game he really wanted. Prior to that he fasted 2 meals to get a Darth maul light saber.  This time he has to fast in the morning and spend an hour or two cooperating with nursing staff (and after that he'll be asleep) and he is very excited to earn another Monopoly game.

Since Calvin is earning a new toy he is super excited about this upcoming surgery! He is counting down the days.  And, as difficult a child Calvin can be, he is very often a very sweet patient.

Surgery entails a 2 cm incision right behind the hair line where the dr. will insert liquid bone. dr. will mold bone on brown and around orbit to how he thinks it should look and then let it sit for a few minutes before closing the incision.  The bone will set within a few hours and then get completely hard/strong over a few weeks. Eventually Calvin's bone will grow over the matrix.

Praying things go well for him and that things go smoothly. If they do, we'll be home by noon the same day.   Also hoping things look good on his face when it is all done.

After surgery we will take a 2 week break from general PE type stuff and  6 week break from gymnastics while the liquid bone sets completely.

bittersweet

We have been so blessed over the last year as everything for Calvin has fallen into place to help us find the perfect school for him, the right medication and correct doctors. We are so fortunate.  That being said, I think I am still trying to wrap my head around the idea that I have a handicapped child.  I think one of the reasons it is hard to fully comprehend is because he is mildly handicapped. He has a normal IQ and serious behavior problems and coping issues. There is a possibility that he will progress enough to  function normally.  His story is not yet fully written and we don't know how things will turn out.

I guess the trick to survival is to live one day at a time and not to look forwards or backwards too much, but sometimes I can't help it.

A year ago, Calvin was still in mainstream school. I still thought he might be able to survive there. I thought he might belong there. As I look back at this I think to myself how crazy it is to think that I believed this.  It was super stressful to send him to school knowing it could be disastrous.  I remember last summer I sent him to a summer camp with the girls. I think it was for 2 hours for 3 days that week.  I was not even out of the parking lot on the first day before the camp called to tell me that they could not handle him.   It was stressful sending him places and not knowing if he would handle it.  Now I have a better idea of what would work for him and what wouldn't.  It is bittersweet.  In so many ways, it is better to face things as they really are.  To know I can't sign up my kid for summer camps, can't send him to parties or other activities without an adult, can't get a babysitter.  This is the safest way. There are no surprises and no disasters.  But it is also hard. 

Another balance that I seem to struggle with in meeting reality is in my expectations. Should I expect absolutely nothing from Calvin? No chores, no homework, etc. etc. or should I be pushing him to do better and be better. How do I push him without causing him to crumble and fall apart?

A friend of mine told me God only gives us what he knows we can handle.  I should feel flattered that God gave me a challenge that I think I can't handle. And I also fell humbled to know that there are so many people whose challenges are so much more difficult and painful and are faced with grace faith.

And while we are looking backwards I should acknowledge one more HUGE blessing in this last year of great change. Dave has been home a lot. In a career of a lot of schooling followed by a lot of work it is a miracle that he has been home to help me and to experience all of these changes with me.  He has been home more in this year than he has ever been since and probably will ever be in the future.   I am so thankful.

bus driver fights

We have had a rough couple of weeks with the bus. Calvin has been driven to school a couple of times and once we had to go pick him up at school because he was having such difficulty even getting on the bus and getting his seat belt on so they could leave.

There have also been numerous complaints filed by the driver and aide and we've had several phone calls and even one meeting to discuss how we could help Calvin be more safe on the bus.

At first I was kind of baffled as to why we were having so many problems on the bus. Last year, we did have a few rough days but overall, things were okay.  It was just the usual kind of thing with Calvin where some days are better than others. For some reason, this year problems on the bus have been the norm.

We set up an incentive program where he would receive points for being good on the bus. We discussed what else we could change and even discussed the possibility that perhaps the bus driver or aide were not a good match for Calvin's personality.

Most special education personnel are over the top friendly and nice because they know that special needs kids need lots of positive reinforcement.  Our previous drivers had said "HELLO!" and "How are you?" every day when Calvin would get on the bus. This driver never said "hi" never cracked a smile and the aide was no different. They were pretty grouchy people. Add a grouchy Calvin to that and it is bound to be miserable.

At home, to try and help the situation we had let Calvin take not one, but THREE electronic devices on the bus (DS, Kindle Fire and MP3 player), so there should be no time for him to get into trouble. So the only time that there could be a problem would be if as he was getting on the bus there was some kind of power struggle before he could even sit down and get a seat belt on and use his electronics. It seemed pretty crazy that each day the 2 minutes of interaction between the driver,aide and Calvin were resulting in major conflict.

I was on the bus one morning helping Calvin into his seat and the aide started talking to Calvin in a very mean and stern voice because he was whistling and then yelled at him to hurry up and get in his seat.  It was a pretty heated response for a minor infraction.  When dealing with Calvin it is important not to show him that you are upset and to be able to ignore small problems (annoying noises) for the good of the bigger problems (being safe and finding a seat).

I called the district special education bus person and told her about the incident, repeating my concern that perhaps the driver and aide are not patient enough for Calvin. Not many people are. She suggested we try another more experience aide for the drive home.

That afternoon Calvin was being difficult as he loaded the bus after school. The bus driver refused to drive with Calvin on the bus and told the school to "drag him off the bus". The school does not drag anyone anywhere, especially down stairs on a bus so they told the driver they would have to wait for Calvin to calm down so they could get him off the bus in a safe way.  The driver refused to wait, saying he had a schedule to keep and insisted that they remove Calvin. The school again said that it would not be safe so the driver said, either you call the parents or I call the police.  ( I didn't know this entire story 'til the next afternoon or I would have not put Calvin on the bus with him again under any circumstances). Dave happened to be home and Iwas at Costco and didn't hear my phone ring so dave went to get him.

A disaster was brewing. I knew it. Dave knew it. I called the administrator of bussing one more time and made sure she knew it too. She was starting to consider changing drivers (it is difficult since the route they drive is part of their contract) but I think she was starting to see she had no choice.

The next day I got a call from an administrator at Calvin's school telling me that when Calvin had arrived at school that day and personnel were helping him off the bus there was an incident and the bus driver had hit Calvin! WHAT THE HECK!?! A bus driver hit my special needs child? Apparently Calvin wasn't cooperating as he got off the bus. Calvin called the aide a bitch and the driver decided to try to intervene and said something like "wanna fight?"  Seriously, how professional is it for a grown man to ask a child to fight?  Anyway, Calvin continued to call everyone BI*&H and took a swing at the aide. The bus driver hit Calvin's arm away. The school personnel say it was a hit. The bus personnel say it was a block. Either way, it was pretty unprofessional and it is under investigation. Meanwhile, Calvin got a new driver and aide. The two nicest people in the world (as most special education people are) and things has been blissfully smooth ever since. Calvin will not be perfect in any situation but at least things are safe and back to what our regular normal is.

The current driver is a sub so we probalby won't have him for long but I did let the bus administrator know that Calvin won't ever ride the bus with the regular driver again.

Never a dull moment around here!

another one of those days -

It is nice that we are semi stable and our crazy days are not as frequent as they once were.  It has been two weeks since Calvin missed the bus but today was another one of those days.

7:15am- calvin on the bus - grumpy and barely made it.
7:40am- dispatch calls and asks me to drive and meet the bus to get Calvin off the bus
load up the car with the girls and go meet Calvin drag him off the bus and into the car. he is really upset now because since he didn't stay safe on the bus he has lost a privilege.  Calvin tried running from me a couple of times and we were on a busy busy road during morning rush hour. I had 4 kids in my car and felt completely panic stricken. I told Calvin I would have to call 911 if he ran away from me and I was serious. It was dangerous and not acceptable. Calvin got in the car and we all went home.
8am - home to feed the girls breakfast.
I had no extra cards in the back pocket today and there was no way I could be out the door to get Calvin to school on time so we just worked toward getting the girls ready
8:30 - clare and friend to school
9 - lex to school
10 - calvin to school
(this may sound like an uneventful morning but insert lots of screaming, crying, whining and threatening to get the full effect).

sweet little jo who was basically in the car from 7:45-10 fell asleep for a little cat nap around 9:45 and slept for a while in her car seat. Since we were already down in SD we stopped at the children's hospital to pick up some contacts and visit a friend who is in the hospital at the moment.  When I arrived at the hospital I parked in the parking garage and read a book while jo slept for about 30 minutes more.  She is a sweet baby.

2pm  Calvin home from school (it is his early day)

8pm on the way home from scouts Calvin apologizes for everything he did today.  I wonder how much of his rage is anger management problems and how much is epilepsy. He sure does have a sweet side.

A year ago, we had days like this 3-4 days a week since Calvin was getting sent home from school so often and was completely miserable there. I am so thankful that we are much more stable now and this kind of thing is the exception rather than the rule. Calvin's school has been great for him and for me.

some days are like that....

One of the things that is sort of difficult about having a crazy child is that I am not a 100% dependable person. Sure, I can make an appointment at 9am when all of my kids are supposed to be in school, but if that appointment is on a day when Calvin misses the bus and I have to drive him in to school, well, there isn't much I can do to keep that appointment.  Friday was one of those days! 

I am always learning - on the one hand, it is a good thing to be learning new things, but on the other hand, sometimes I just wish I already knew more!

Friday Calvin was sound asleep at 7am. The bus comes at 7:20. I had no idea why he was  asleep at 7am. He is such an early riser, it is very rare for him to be asleep at that hour. Ididn't if he was up 1/2 the night or not feeling good, so I decided to let him sleep a bit longer. Even with the noises of the girls waking up, he was totally out.  Well, around 7:15 he woke up and was super upset that he was going to miss the bus.  Here's where I realized my mistake!! TOO LATE!!! The routine is more important than the sleep.  I should have woken him up and tried to get him ready for the bus.  Now, there is no point in drenching myself in mother guilt here. It could have just as easily gone south if I woke him up when he was not ready to be woken up, but I still think I probably should have just woken him up and had a good breakfast ready for him.  Maybe next time.

I had planned to go to the zoo that morning with my little girls (4 and 1 year olds) already and since I was taking him to school, very near the zoo, I thought "since I'm taking him to school, I will be at the zoo even earlier than I had originally planned." I texted my friends to let them know I'd be at the zoo at 9am.  I thought I would be arriving at the zoo around 8:45 and be there super early.

I got everything and everyone ready and Clare off to school with a friend.  Calvin was very grouch and off all morning and eventually got in the car without clothes or breakfast.  I bribed him to get dressed and paid him $5 to take his medication (for epilepsy) while we were in the car.    He really wanted McDonald's for breakfast, but where we stopped I saw every other fast food establishment but no McDonald's. I got Lex some breakfast and a few things for Calvin that I knew he liked. However, when he is upset, there is nothing on heaven or earth that will please him.

So, off we went to school.  I have learned that when I get to school I need to hop out of the car and lock it once he gets out, otherwise he'll sit in the car and refuse to go in.  So, that's what I did.  Usually, if I get somebody from school to help me, once I have him out of the car, I can leave and the school personnel will escort him to school and/or stay with him 'til he is ready for school. Well, not Friday. He started pouting on the sidewalk and then hopped up on the car!  I was stuck!  I unlocked the car and got the 2 girls out so they wouldn't be too hot (it was 8:45am and already 80 degrees outside). We wandered around for a bit and then sat in the office waiting for Calvin to get down. Since I have the girls, I can't really chase him around. And of course, the school personnel aren't going to try to chase him down from the car. It is not safe.

 

 

The girls and I sat and waited for an hour. I was so bugged to be late to the zoo!   I texted this picture to my friend to let her know why I was running so late.

 

Sometimes I'm not sure if I should just let people think I am a total flake and can't pull myself together to be on time, or if I should let them know what really goes on in my life.  I dont' know if people are completely horrified or kind of amused.  I know that I am a mixture of both!  Life is crazy - -what can I say! I really can't complain though.  Overall things are going well, and this was the day Calvin missed the bus in 3 weeks of school.

 

How did it end?  I had also texted Dave the picture. He was in meetings at work but I thought he might get a kick out of the picture. As luck would have it, he finished up around 10am and his hospital is just 5 minutes away. He came by the school on his way home. He drove up right next to my car and Calvin was shocked to see him. Shocked into submission.  He hopped down and sat with dave on the sidewalk. Once I saw I was free I rushed off to the zoo, over an hour late to meet my friend.  Calvin was pretty chill and went to school just fine. I'm not sure if dave worked magic that morning or if Calvin was starting to be done with is fit on his own anyway. By the time dave got there, he was moving down the car! 

 

Anyway, that was Friday morning. Kind of crazy but nothing serious.

a year ago - story telling time

My outlook on life/Calvin has changed dramatically in the last full year.  One year ago, Calvin started 3rd grade. He was assigned THE BEST teacher in our school. We had hopes that with a new teacher, a fresh start and some sweet friends in his class, he would "make it."

That being said, we also knew that hope alone would not be enough. He had not made it through the week of scout camp in June.  Scout camp is fun, the teaching atmosphere is relaxed.  We knew that if he couldn't do scout camp, there was no way he would be able to do school.  We visited our psychiatrist to reconsider some medication to help him out. He started tenex which, at the therapeutic dose made him drowsy and helped him sit through school but did not help him get any work done or cut back on tantrums. Although he was sort of making it through school it wasn't enough for me.   Last October we took a trip to Washington DC for dave to attend some meetings and to visit my brother Scott and Dave's parents.  The trip was a complete nightmare. It was awful (we loved seeing family though).  It was really during that trip that I realized the medication, while sedating him enough to get through a school day was doing NOTHING for him. When I got home from the trip and talked to his teacher about the amount of work he was doing,  which had not changed a bit since we started the medicine, we decided to take him off and try something new. This was a turning point.

The second medicine we tried was a stimulant.  Also, for those of you who don't have kids on meds, it should be added here that when you start a med and come off a med it is not a one day affair. It takes 2-3 weeks to slowly work up to the therapeutic dose and then another 2-3 weeks of coming off the dose and down to baseline again.  A few of the ADHD meds are the kind that you can take one day and then not the next but many are not that way and I believe no dr. should prescribe them to be taken that way.  I dumped one dr. who gave us a full dose on the first day. All meds should be raised slowly to therapeutic dose, otherwise you can easily over medicate.  Soapbox!

So, we started a stimulant medication, which are the typical medicines used for ADHD kids and are quite successful. IT WAS DISASTROUS!  Calvin was super angry and aggressive. one thing that was amazing about it is that he was full of energy. Calvin is pretty lethargic and has no endurance to do things such as sports and even just regular play so it was a nice change to see him with full energy and able to play and keep up with other kids.  3 days on this and we were done.  Also by this time he was pretty much done with general education.  We had to keep Calvin home from school for a few days while we made some adjustments as he came onto and then off of this stimulant.

About this time we realized that he had no way of surviving the general education setting. I was getting calls and he was getting sent home so often it was completely ridiculous. If he was at school he was on the computer playing whatever he wanted so that the teacher could teach the rest of the class without him being disruptive.  It was clear that this wasn't going to work.  Dave and I visited all the special ed classes in the district and it was not long after this that we placed him in the ED class in the school district.   It almost makes me cry to even write that we put him in that class. It was so awful.  I didn't feel good about it when I visited it. I didn't feel good about it when he was there.  It was truly a tender mercy that he was only there 3 months. 

I used to worry that because the medication changes played such an integral role in his failure in school, that it was poor judgement on my part to change his medication. This was amplified by IEP team members who repeatedly asked why I made the changes and pointed out that the timing of his most severe problems was in line with the  medication changes.    Looking back I have no regrets.  While I'm sure teachers/staff would have loved if I kept him on tenex, so sleepy and dulled that he could sit through class, it didn't help at all his learning or his overall temperament, executive functioning and self control.  I don't expect that a single medicine will offer a complete turn around in all of these areas, but tenex  did nothing for him.  And, knowing what I know now, that he doesn't have ADHD and these were not even the right class of medicines I see I we were for sure right anyway.

It was about this time that we finally were able to see the developmental pediatrician.   She was able to look at his medical and behavioral and school history and get a good overview of what was going on. She saw sleep disorder as our main problem. She saw that ADHD was unlikely to be an accurate diagnosis since the medicine was not effective.  She put us back on Tenex at a low dose to aid in sleeping through the night. Dr. Gahagan is one of my favorite dr's I have ever worked with.  She was gentle and kind (to Calvin) and compassionate (to me).

The rest of this history is documented in our visits to the autism center and other school meetings.

I will write another post about how he moved from district to private special education. At the time I was writing I was focused on finding the right class, not on recording the events so that I'd remember and learn from them.

This post is not what I thought it would be when it started, but I am glad to have this all written out.

when the police came to my house

This happened a few months ago and at the time I didn't feel like blogging it - it was too terrifying and humiliating to me -  but now enough time has passed that I'm over it.  This was written a couple of months ago.  Nothing ever came of it. 

Yesterday evening Calvin was in the pool screaming/wailing becuase he didn't like the color of towel he had. Clare was sweet enough to trade with him twice and he still changed his mind last minute and wanted a different towel but she was already in the house and he didn't want it after she had used it. He sat out ton the steps of the pool for a good 20-30 minutes crying/wailing at the top of his lungs while the rest of us went inside and got changed and dressed and ate, etc. Some neighbors kept walking by the top of the driveway and eventually one of them -super old guy - came down the driveway and stood by the pool gate watching Calvin. Dave went out to talk to him. The old guy thought it seemed like a long time to be crying about a towel (tell me about it!) and mumbled and grumbled about how "it just didn't seem right." A few minutes later a police officer started walking down our driveway (obviously they had called the police before talking to us). By the time the police were here Calvin was sort of settling down and came in while Dave was out on the front porch talking to the officer. Dave gave the police officer a brief history of Calvin (getting kicked out of public school, special ed. and now at special school for behavior problems. The police officer suggested we try medication (Thanks, I'm a Dr. and yes we have tried some). The police officer also said, "oh, 4 kids is kind of tough...maybe you should put on a movie or something for them so you can get a break."  He said he was here basically because some neighbors of ours have too much tim e on their hands. Anyway, it sounds like he was a nice enough guy. I am assuming the police will have to call CPS which I assume will be a big pain. One of my friends had CPS called because one of her kids went to school with a burn on her arm and she said they came over and interviewed all the kids. Actually this happened to two different friends. Both got reported at school for burns. 

Dave is not the least bit concerned about any of this but I am. Dave says, "oh, tons of big families have been turned in to CPS for one thing or another" and though it is true I've known a few it is still very disheartening.
Calvin has a bruise on his chin. Not sure what it is from. It might be a hickey from sucking on something but he has no idea where it is from. Anyway, I asked him where it is from and he said, "It might be from when Daddy was getting me out of the pool with a stick."  ha!  How unlucky can I be?

epilepsy 1st aid

At our first epilepsy appointment, the neruologist asked us if we know epilspsy first aid. I said no! 

Here is the basic epilepsy first aid. Probably everyone should know this!

1. do not restrain anyone while having a seizure
2. do not put anything in their mouth
3. roll them onto their side
4. call 911 if a seizure lasts more than 5 mintues


Also, here are some safety rules for epileptic patients.

1. do not swim alone (drowning is the #1 cause of death with epileptic people)
2. wear a helmet when riding a bike
3. no climbing trees

vacation time!

Calvin and Dave are on a boy trip this week which means it is girl vacation time at home as well!  It is amazing how clean and quiet the house is without the boys.   If only they could have taken the dog too. . .

meeting with epilepsy neruologist

We had our first appointment with Dr. Nespeca this week.  Dave has known him for a few years  and has always spoken very highly of him. Dr. nespeca is a pediatric neurologist and an epilepsy specialist.  We feel very fortunate to get to have him as our dr. for Calvin at this time.

At our appointment he took a very long and detailed medical history of Calvin.  Of course,  he wanted to know every particular about the two seizures we saw and about the pallid episodes Calvin used to have frequently.  He was also concerned about all other medical issues Calvin has had.  He conducted a thorough neuro exam and Calvin was completely cooperative for this which is sort of amazing.  One interesting thing that we saw in the neuro exam is that Calvin has double vision in his right peripheral field.  Sad. The poor boy can never get a break!  We have been seeing a opthomologist for life and we have always known he had some issues with the right eye tracking (strabismus) but I had never known he had double vision. I knew he couldn't see 3D. Anyway, he suggested we go back to the ophthalmologist and get his thoughts on the issue.  No wonder this boy can't play sports! He doesn't have depth perception or peripheral vision! 

Dr. Nespeca showed us the MRI. Dave had seen it in the OR with Dr. Levy (neurosurgeon at Children's)  but I had never seen it.  He showed me the flare they had seen and it really is a SUBTLE finding, but it is there. With a little help, even I can see it.

Calvin had started on the anti epileptic medication in June but was on a very low dose. Dr. Nespeca raised the dose to a more appropriate dosage for Calvin's weight. It will take a few weeks to work up to the therapeutic dose. We will see at that time if it makes any difference in the behavior.

Dr. said that all of the kids who have epilepsy have problems with learning and behavior but the severity varies. Given Calvin's difficulties and placement in school it is clear that he is on the pretty extreme side of the spectrum. Most kids are able to be mainstream or in the district special ed placements whereas calvin has moved to private special ed placement which is more severe.

One interesting thing was in the reading of the EEG. When we went to the EEG Calvin was initially not cooperative. He sat with the electrodes all over his head for a long while but would not go to sleep as he was supposed to. He was agitated and upset and eventually pulled all of the electrodes off of his head.  He went to the bathroom and cooled off and then came back to the exam and was perfectly cooperative.  He was calm and relaxed, eventually fell asleep and then woke up and let the tech complete the exam (shine lights on him, blow a pinwheel, etc).  Anyway, on the initial reading that the neurologist did (not Dr. Nespeca) she reported several spikes in the temporal lobe and some spikes in the frontal lobe.  Dr. Nespeca said that he had looked over the test himself and didn't see any spikes in the frontal lobe, but had seen some activity in the temporal lobe. At our appointment he was going off of his memory of having seen the test a month earlier so he promised that he'd go back and look at the test once more to be sure that he wasn't missing anything.

Later in the evening Dr. Nespeca called Dave on his cell phone to discuss what he had found on his second pass over the EEG. Apparently Dr. Nespeca had only previously looked at the second part of the EEG (where CAlvin was cooperative/sleeping) whereas the other dr. who officially read the EEG had only looked at the first part of the EEG (where Calvin was uncooperative and agitated).   A careful look at both parts of the EEG accounted for the discrepancy between the Dr.'s interpretation of the EEG.  Dr. Nespeca said that in the first portion of the EEG there were a lot of temporal lobe spikes and some frontal lobe spikes as well. The frontal lobe spikes were always preceded by a temporal lobe spike.  During the second portion of the test there were some temporal lobe spikes.

There are some things that are really interesting about this result. #1. Usually the most epileptic activity is seen when falling asleep and  just waking up. That is why the test is sleep deprived. It is unusual to see so much activity while fully awake. #2. It is interesting/unusual that Calvin was having so much activity while agitated.  Does this mean that he has a lot of epileptic activity when he is angry? Does he have "rage seizures?"

The temporal lobe is very near some important structures regulating mood, aggression, self control and of course the frontal lobe contributes to personality as well.  A "temporal lobe epilepsy personality" is well documented as a person with mood problems. 

In epileptic cases, it is actually rare to find definitive answers on the EEG and MRI (less than 1% of epileptic patients). I feel lucky that we do have findings since it helps us to know we are for sure starting to understand what makes Calvin the way he is.  The brain is a mystery. There are few black and white answers. However, with the compelling evidence on the EEG and MRI, we are safe to assume that Calvin has an epileptic brain, his learning and behavior problems are directly related to his epilepsy.

We go back to Dr. Nespeca in 3 months.  We call if we see any other seizures in the meantime.  CAlvin is not suppsed to climb trees or swim without close supervision and he should always wear a helmet on a bike.

Summer

School is out for Calvin now! It was such a blessing to have him in school for June and July while the other kids were home. Clare and Lexey play so well together. They get along and play for hours without fighting.  Also, the weather was great during that time.

Now it is finally summer in that it is too hot for me to be a pleasant person anymore and I have all my kids home.  I don't like summer!

Calvin's school has a summer camp. It is from 8:30-12:30 every day. It costs $60/day and parents have to provide their own transportation to and from school.  Calvin had a couple of days of regular school he needed to make up so he was lucky enough to be able to attend a couple of days of summer camp. It is a pain in the neck to drive him down to school since it is 30 minutes away it is hardly worth my time to go back home in between drop off and pick up.   However, we took advantage of these two days to go to the beach and go to the zoo without him. It was kind of fun and we made a special field trip out of it for the girls. Since Calvin is at summer camp they do fun things like go bowling, do crafts and eat yummy food. It is a win/win.

I'm not going to lie -- if I were made of money I would totally pay for him to go to summer school every day this summer.  He loves his school and the people there. It is so great and we are so lucky to have found it for him.

Next week we go to the neurologist to learn a little more about his epilepsy.

Then in two weeks Clare starts school and we'll have a little summer with Calvin and Lexey home and Clare at school.

Radiologist MRI report and epilepsy

First, the radiologist report:

The paranasal sinuses and mastoid air cells are clear.

Impression:  Subtle T2/FLAIR prolongation of the right hippocampus with questionable decrease in size of the mid  posterior body relative to the left. Findings are concerning for recent seizure or early mesial temporal sclerosis.

Asymmetry of the left cranial vault and postsurgical change status post known repair of the craniosynostosis.

This is exactly what dave told me he saw a week ago but it wasn't real to me until I actually saw it in writing.
What does this mean? It means Calvin has temporal lobe epilepsy (TLE).  It means Calvin has been having seizures for a long time. It means the repeated seizures have caused scaring in his brain.  I'm sure it means so much more that I have yet to learn.  I have been reading quite a bit about epilepsy this week.

I have experienced a wide range of emotions since learning this. First, I thought, ta da, we found the missing piece to the puzzle and FINALLY know what is going on with our boy. It is not just that he is hyperactive, defiant, difficult. It's not just that I'm a bad parent and can't teach the child right and wrong. It is not just that he isn't sleeping well. There is a real physical cause for all of his problems.  It is sort of nice to know that all of my persistence and begging dr's to run tests on him to try and find a physical cause for his problems was not  just a crazy mother looking for an excuse. I have always known there was an underlying physical cause that at least contributed to his struggles.  That was my first reaction.  My second was of sadness. Now that we know the cause of his problems, it is sad to know that he has been experiencing seizures for years and they have been causing serious damage to his brain.  I have to grieve the loss of my child yet again. What would Calvin be like if he did not have these seizures going on in his head preventing him from learning as he should and causing such out of control emotions?  Who is the real Calvin?   And lastly, most of all I feel so blessed. We are lucky to know what Calvin has. We're lucky he's in a great school. We are so lucky we have healthy children. Our problems are so small compared to others. 

Some quotes from one of Dave's Neurosurgery book.

Seizures are defined as an alteration of behavior, movement, or sensation that results from an abnormal and excessive discharge from a group of neurones.

Epilepsy is defined as two or more unprovoked seizures.

Incidence of epilepsy during childhood is 1%.

The impact of repetitive seizures and anti epileptic medications can present noxious stimuli at critical developmental windows....although the vast majority of children with epilepsy eventually enter into remission, they remain at a substantially increased risk of not meeting their educational, vocational, and social goals.

Mesial temporal sclerosis (MTS) is the most common pathology in adults undergoing epilepsy surgery. It is rarely seen in a child less than 10 years of age.

Children with TLE spend a significant portion of their "awake" time with an altered percetion of surrounding stimuli. The effect of this intrusion into the child's normal developmental schema blurs and therefore affects the normal processing of information necessary for the normal functional development for cognition and other neuropsychological abilities. Numerous studies using full-range IQ scoring have shown that intellectual function is depressed in these children and many have debilitating behavioral problems that include temper tantrums, aggression, attention deficit disorders, and hyperactive states... 

Children with imaging abnormalities rarely "outgrow" their seizures.

Important disclaimer for the following quotes -these came from a NeuroSURGICAL book so of course the point of view is slanted toward surgery. We haven't been to the neurologist yet to find out if he would even consider surgery for Calvin.  From my reading it seems that surgery is recommended for people who have seizures which can't be controlled by medication 

Early surgery in children with MTS leads to an overall improved chance of seizure-free state an dimporved outcome with regard to cognitive and neuropsychological measures.

If a patient has had seizures for less than a year and is found to have a lesion, he or she can be treated for the lesion alone with excision with a high likelihood of curing the seizures. If the seizures have been occurring for more than a year, in children with lesions, then they are less likely to be cured with lesional resection alone

Surgery remains superior to continued medical therapy with regard to outcome, morbidity and mortality in children with intractable temporal lobe epilepsy (INTRACTABLE means very difficult to control with medication).


Temporal lobe epilepsy articles:
http://www.hindawi.com/journals/ert/2012/849540/#B8
http://www.epires-journal.com/article/S0920-1211(04)00120-2/abstract


We still haven't been to the neurologist.  Our appt is 3 weeks away. We have so many questions.

one month contact!

Today Calvin finally reached his goal of wearing his contact for one month as he is supposed to do. We started contacts in November and every month he either accidentally lost or took it out somewhere or purposely took it out and ruined it when he was mad.

I am proud of him for doing a better job with it now!

He is trying to be responsible with his contacts so he can earn his Wii back. Dave took it from him a few months ago as a consequence for being so irresponsible and ungrateful for his contacts.

Yay for Calvin!

Also, a month or two ago we met with the opthomologist. We have been seeing the opthomologist 4-6 times/year for the last 6 years. At this appointment he told us that we don't need to see him anymore unless there is a problem. We can follow up with the optician who fits us for his contacts.   It will be nice not to have these appointments any more. (Though I will miss our opthomologist. He was my favorite of all of our Dr's.)  And, the timing couldn't be better. With all this new seizure stuff going on we will probably have plenty of other dr. appointments and things to worry about.

Calvin's vision now is 20/20 in one eye and 20/40 (corrected) in the other. It is probably as good as it will get and I think it is a result we can live with. It is certainly an improvement from where we started which is 20/80.

waiting

This week Calvin had his MRI. Things went very well. He had to be fasted and ready for general anesthesia, which is always kind of a pain for a kid who loves to eat!  He is old enough, however, to understand the importance of the dr's instructions and to go without even if it is uncomfortable. Also, we were lucky enough to get the 8:30am exam time so he only had to skip early morning breakfast.

Calvin did a good job at his appointment.  After the MRI while I was waiting with Calvin in post anesthesia recovery, Dave slipped into the OR to chit chat with the neurosurgeon operating (check the results of the MRI under someone else s log-in since he isn't technically allowed to check Calvin's chart).

The MRI looked fine, but there was a subtle finding in the temporal lobe. Dave said it could be dismissed as nothing by the neurologist or could possibly be the focus and what the neurologist will say is a possible cause for the epilepsy. Dave is not an epilepsy expert so he can't really know with certainty what exactly Calvin will be diagnosed with and though we know the EEG showed epileptic activity, we still don't know in more detail exactly what was seen in that test.

We don't see the epileptic specialist for another month so for now we are just waiting to have all of our questions answered in August. We feel grateful that we saw the seizures that we did and were able to get all of the testing done so quickly. We are hopeful that the medication Calvin is on will help control them for now.

brain MRI scheduled

MRI with and without contrast is next week.  The exam is 45 minutes in length and general anestesia will be needed. We got a nice and early time of 8:30am which is the best since Calvin has to be fasted. We report at 6:30am!!  I think I might just send Dave with him in the early AM and then take off a bit later when I have a chance to get the girls up and out the door. 

Results

Today we got a call from the neurologist with the EEG results. It looks like Calvin does not have the Benign Rolandic Epilepsy as we had previously thought and hoped.  He does have some kind of epilepsy however.  The EEG showed epileptic activity awake and asleep but the pattern and point of origin was different than what would be expected in Benign rolandic epilepsy.  With this news, the neurologist recommended we start Calvin on an anti-epileptic medication today and that we schedule an MRI to look for a possible physical cause for the seizures such as a tumor or other anatomical abnormality.   At this point I am still not too worried, as long as it doesn't develp into something more serious we are fine with this result. The medication recommended (oxcarbazepine) will not have too many side effects and it is possible it might even help us with other aspects of Calvin's life since it also known to be a mood stabilizer (yes please!).

MRI will most likely be in a week or two and then we will meet with the epileptic specialist on Aug 6th to hopefully find out exactly what type of epilepsy Calvin has and what to expect now and in the future.

Brain Lab Experience

The sleep deprived brain lab went well.

In preparation for the test, Dave and Clare and Calvin went out to run a couple of errands around 9pm (we decided to let Clare stay up late too to help keep Calvin company). The kids were so slap happy that when we put them to bed at 10:45, the still bounced off the walls for an hour.

Dave set his alarm and woke up Calvin at 3:45. They ate breakfast and then watched a movie. At around 6 I got up and Dave went back to bed for a nap. By the time I got up Calvin was so tired I couldn't let him sit down. He was quite pleasant and thought it was funny to say, "oh, I'm just going to go lay down and have a quick nap....."  

We dropped off the girls with babysitters and headed for the hospital. It was a full time job for me to keep Calvin awake in the car!  

AFter checking in and waiting, Calvin was brought to a quiet corner of the hospital. He laid down on a bed while the tech connected about 20 electrodes to his head. He was very patient.  He was starting to fall asleep while he was holding still so I had to work to keep him awake. I think this irritated him.  Once he was all hooked up the tech left  the room and turned out the lights and asked Calvin to close his eyes.  The hope is that he would fall asleep so that the Dr. could see him go into sleep and then come out of sleep.  Calvin was not super cooperative and didn't want to close his eyes. Dave sat and talked with him to help him stay calm but he wouldn't rest his eyes!  He said he needed to go to the bathroom.  When we asked the tech to help us get him to the bathroom she came to help him get up with all of his wires attached but Calvin ripped them all off.

After going to the bathroom a new (more experienced) girl named Jen took over.  The first tec, Venus, had told me it was only her 2nd day on the job. She had previously worked almost 20 years for the navy so though she knew what she was doing she didn't know how to work with kids.  It was very kind of Jen to tell us she would re-set up all the electrodes. She was able to do so in about 5-10 minutes. (It had taken the first girl a good 20-30.  She spoke to Calvin in a sweet and enthusiastic voice and he responded well to her. She told him that after she got him hooked up he would need to close his eyes for a few minutes so the Dr. could look at his brain waves.  We also increased our bribe from in-n-out to a new lego set.  Calvin was obedient to her and afters a few minutes of keeping his eyes closed he fell asleep!  

The tech let Calvin sleep for about 10 minutes and then came in the room to wake him up. He was in a pretty good mood when he woke up and was cooperative for the rest of the test. He was asked to blow on a pinwheel for 3 minutes to hyperventilate him. Then she put a strobe light directly over his face and he looked into the light while it fired. Sometimes he was supposed to have his eyes closed when the light fired.

The rest of our day was the same as always -- we swam with some friends and then Calvin had scouts in the evening.

The results of the EEG will be read by a neurologist within a couple of days and a report will be sent to our Primary Care DR. I am assuming he will call us when he gets those.  If we are lucky, the EEG will be a classic case of benign rolandic epilepsy which has a distinct pattern on the EEG.  However, finding epilepsy on an EEG is a tricky thing. Dave has had patients with very serious seizure disorders come into the hospital and stay for days being monitored round the clock and nothing helpful shows up on the EEG. Dave says he has even taken off the top of the skull to place electrodes directly on the brain to try and find seizures for some desperate patients.  That is why I say, if we are lucky, we will see something on this first test which will tell us more information.

I scheduled an appointment with the neurologist at the end of July so that we can discuss what to do. 

Poor Dave who was pretty sleep deprived himself got paged last night as we were going to bed and had to go in!  He didn't get home 'til around 3:30.  

And, Mr. Calvin after having 2 days at home didn't want to go to school today. I got him on the bus by buying him a new app for the kindle fire, figuring $1 for a new app is cheaper than the 10 or whatever it would cost in gas if I have to drive him down to school. Calvin got on the bus at 7:20 but the bus brought him back home at 7:40 because he was being too difficult to control on the bus.  So, it's time to pack up and take Calvin to school and then stop at dog beach! It is a beautiful summer day! 

Sleep Deprived Brain Lab

Tomorrow morning Calvin has a brain lab (EEG). He is supposed to be sleep deprived so our instructions are to keep him up 'til 11pm and then wake him at 3am for the day. We are going to let him sleep 'til 4 since he will still be plenty tired for his appointment at 10:15. Once he gets to the appointment they will hook him up to the electrodes and then put him in a dark room to sleep.  They want to watch him go to sleep and wake up out of sleep.

Dave and I are taking shifts. Dave will get up at 4am with him and then I will wake up at 6 so Dave can take a nap from 6-9am before we leave. I am interested to see how the day goes and will hopefully post again tomorrow night after it is over.

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!!