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