password

When you set up a library card, the default recommended password is the last 4 digits of your home phone number. That is what most of us use.  Calvin however, decided to change his password to a four letter word that starts with f and rhymes with truck and is not appropriate to write on my blog.

nicknames

We were at a friends house a few days ago and it was time to go, I said, "come on Lexey and Clare!" and Calvin shouted "yeah, come on SEXEY!"  The people who we were visiting thought that was just about the funniest thing they've ever heard. They are Calvin's new biggest fans.  We are so used to all the quirky things he does each day that it is just part of our life. To these darling friends, each day is a new adventure waiting to see what Calvin will say or do next!

Overall Calvin's behavior is much better than it has been in a few years so instead of huge breakdowns and fits we just get swearing and other more minor infractions. It is interesting having moved at this time where people just know Calvin as a funny boy instead of being terrified of him like all of our Poway friends have been.  A welcome change.

A father's wish

Spoken by the Cob, (Louis' father) in The Trumpet of the Swan by EB White

"Goodness! What are you getting at? Do you wish me to believe that I have a son who is defective in any way? Such a revelation would distress me greatly. I want everything to go smoothly in my family life so that I can glide gracefully and serenely, now in the prime of my life, without being haunted by worry or disappointment.  Fatherhood is quite a burden, at best. I do not want the added strain of having a defective child, a child that has something the matter with him."

This is why reading good books is so amazing. To put into elegant words some of the thoughts of your heart, which you do not have words to describe yourself.

up to the challenge

A few weeks ago Dave told Calvin that if he could run a mile without stopping at all, in under 10 minutes, he would buy him a new gaming system. I thought that this was a pretty lofty, if not completely impossible goal. Calvin went out running with Dave a couple of times but could only make it a few houses and then he'd stop with cramps completely out of breath. He only tried this a few times and the rest of the days he wouldn't even go out and try. However, he was completely planning on getting the Wii U as evidenced by his hours spent shopping online for the best wii u package! He also told his sisters that they could keep his old wii when he got his new wii u.  I was very concerned that he would have a major let down as weeks and even months passed by and he couldn't get his wii u. He is not good at waiting. We told Calvin that it would take one or more months to train himself to be able to run that far without stopping.


This morning Dave got home from work and offered to take Calvin out to practice running. Dave said, "Let's see how far you can go without stopping." Calvin went with him and low and behold he ran the entire mile without stopping. It was amazing. He was really dragging toward the end but hung in there.  Lexey and I were out on bikes and saw him and Dave coming down the road so we cheered him on as he ran the last 100 yards.

He came straight in the house and sat with the open fridge getting lots of drinks of cold water and telling the girls about his battle "I had cramps but I just kept going" "My mind was telling me I should stop but I just told myself to keep going".  Good for Calvin!

Later this afternoon Dave took him out to get his wii. Christmas will be a real let down after this. 

Today is the biggest college football day of the year so Dave told Calvin he'd have to wait to play until tomorrow. Calvin said that would be fine....but Dave ended up finding another solution, letting Calvin use the computer monitor for the wii while he watches football on the big tv.


I wonder what else Calvin can do ..... sometimes I wonder if we underestimate him.

sports

Since coming to Houston I've tried to get Calvin to sign up for sports. At first we put him in Karate since he was doing so great in Karate at school. Technically it's martial arts, not karate. After just a couple of weeks Calvin decided he didn't like it because it was too hot. I chose martial arts since it is an indoor sport and would have great A/C but  Calvin didn't even like the exercise heating him up!  Once you get warm in this town you can never cool off!

There is a challenger basketball league here probably much like the one we tried at home. I asked Calvin if he wanted to sign up and he said no. When I asked him why he declined to answer several times.   Finally when I asked him one time he told me that he doesn't want to be in basketball with all of the handicapped people. It is interesting that he expressed that. He has been going to school with handicapped people for a few years now, some kind of like him and some much more handicapped. The basketball group was made up of people with more profound disabilities, many being intellectually disabled. It is tough to find a place where Calvin "fits" since he can't keep up with healthy kids his own age and is a little too far advanced to hang with a grouping of handicapped kids. I'd love to help him advance so that he could be with typical kids but I'm not sure he'll ever catch up.   The best solution I've found so far is letting him hang out with patient kids who will help him out, adults who are patient or much younger kids (2-5 years old) who he is basically on par with.  He is happy in his niche as long as his sisters aren't driving him crazy.

cute Calvin

Calvin is doing really well these days. He still has his moments...though his fits aren't as long or as intense or as frequent, which is great.

Lately Calvin has been really into stuffed animals. Lexey was sweet enough to give Calvin one of her stuffed animals "pup" a dog from build a bear that she got a year ago. Calvin talks to pup, takes pup on his bike, to school and to bed. It is very cute.

A few days ago I took Calvin with me to do some errands. I stopped by a thrift store to see if there were tennis rackets. They didn't. But they did have lots of stuffed animals (stuffy's). Calvin looked through each one.  He spent about an hour and found several that he really wanted to take home. Since they ranged in price from $0.75 to $3.99 he had enough money to get a few. He ended up picking 4 very small cheap ones to share with the girls and then one bigger one to give to Jo...a build a bear bunny.  My hands were all greasy from touching all of those disgusting used stuffed animals so we hurried home to wash our hands and wash the stuffies. They came out of the wash looking good as new!  Calvin made name tags for them all and has been taking a couple of them on all of his adventures.

Dave mentioned that perhaps Calvin has matured from toddler (2-3 year old in constant tantrum) to a 4 year old.  Funny and sad at the same time. Glad he is in a sweeter stage.

email

Sometimes Calvin emails me. It is really cute. Today I got this gem:  (Calvin has been reading a lot and has recently been putting lots of books, movies and CD's on hold. Last night we had been talking about this particular book, wondering if the library has it yet)

mom i put on hold diary of a wimpy kid the long haul, and its place in queue number is 149 thanks 



On Halloween Calvin decided not to wear his costume...but then changed his mind and sent this email.

Mom can you come to school with my costume? Because i am now wanting to wear my karate Gi and belt. And please email me back so i can know if you can or not? I U 

medication mistake

Wed nights are always so late because we have scouts/activity days at the church. We don't get home until 8:30 and then have to start bedtime. I went to give Calvin his pills around 845 or 9 and sent him off to bed. A little after 10 Dave went in and Calvin was still awake which is extremely unsual. He asked if I had given Calvin his pills which I had. Dave was paged and had some other things to do and then at 11 Calvin was still awake. Even more extremely unusual.  Dave asked, are you sure you didn't give Calvin his morning meds instead of evening meds? I jumped up to check and sure enough I had given him morning meds, which included a strong stimulant. Poor Calvin, no wonder he couldn't sleep. He was so patient and sweet about it too, just laying in bed, wide awake and talking sweetly to us when we came in repeatedly to see if he was okay. I gave Calvin the evening pills he needed which weren't repeated in the morning dose I had given him and then we tried going to bed. About midnight he got up for a bowl of cereal and then went right to sleep after that. Amazingly enough he still got up and got on the bus today.  As difficult as Calvin is much of the time, little experiences like this remind me of how patient he really is. He goes through a lot and even though he has many tumultuous moments he is a precious and sweet soul.

How was the move for Calvin?

I've had several sweet emails or phone calls with people asking how Calvin is doing for the move.  First, thanks for asking. Second, thanks for acknowledging the fact that it is hard to move a child like Calvin!   So hard, in fact, I almost didn't move. But I'm glad I did.  Thanks to those who kicked me in the right direction.

Leading up to the move: surprisingly no complaints or very few. Calvin did mention one day, I think his last day of school, that his friend was so sad when he learned Calvin was moving that he had to put his head on the desk and take a time out. So cute, love how these sweet kids try to learn coping skills at school.

The move: Calvin did fine in the car. The car is actually a great place for him as long as the girls aren't bugging him. Calvin likes to sit around and play on his tablet so he is pretty content. The fact that we eat tons of fast food is also good for him.  He liked white sands. Took the elevator down to the caverns instead of hiking in.  He enjoyed swimming in the hotel pool. Overall, he did fine.

New home: Calvin did okay in our new house. The first couple of weeks were quite stressful for me going to meetings trying to get him registered for school, get a new dr and getting medications set up here.  The prescriptions I arrived with were not accepted here as an out of state prescription cannot be filled for certain medicines. So, we rushed to find a new dr. with an apt ...sat in the dr office with 4 kids for 3 hours....went to 5 pharmacies and called 10 more trying to get the prescription filled. I was ready to drive back to CA.  Then after a couple of days, Calvin dumped the entire bottle of dextroamphetiamine in water and ruined them.  It was a rough few days after that before we got new pills.

So far, Calvin has written 4 bad words on the walls. H x2, A, F.

New school: Calvin's new school is fine. He has been happy to go to school every day and is in a good mood when he gets home. I don't think they're pushing him very hard academically but I can see some wisdom in getting him comfortable and happy there being the #1 priority. 

New Bus: Not as smooth...we miss our sweet bus aide Jeanneane who we had for 2  years and who Calvin asked if she could move in with us! He is on the bus 1hr 45 min in the morning which is way too long so I don't really blame him for not loving it.  I fully expect this will be a struggle all year. It was at home for a long time too.

New karate: signed him up and he went once and said he was too sweaty. never back again.

New piano teacher: Clare is taking from a man this year and Calvin really liked him so he asked to take from the same teacher.  We'll see how that goes.

Calvin knew - medication continued

- trileptal 750mg twice daily
- tenex 2mg at bedtime
- fluoxetine (Prozac) 15 mg  in the morning
- risperidone 1.5mg at bedtime
- vyvanse 40mg in the morning
- dextroamphetimine 7.5mg at 3pm

We held stead with Calvin's medications for several months, but we still were seeing lots of break through tantrums. Calvin started telling us that he needed more medicine. More of the "blue capsule" (vyvanse) because it wasn't strong enough. We also noticed that his worst behavior was in the afternoon. I thought that it was just because the afternoon is when I have all the 4 kids together so of course it's the most stressful for him. But, it also occurred to us that it might be that the medication from morning is wearing off by then.  We told Calvin he couldn't make excuses for hitting, breaking, tearing, etc. blaming medicine and had to make good choices himself, but he insisted that he needed to take another capsule when he got home from school. So we told him we'd ask the psychiatrist when we saw him next.


We reported to the psychiatrist that we were still having violent tantrums, many of them occurring in the afternoon (or even in the morning before meds were on board).  we also told him that Calvin expressed the desire to take more medication in the afternoon like the vyvanse he was taking in the morning.  The dr. said we could try a booster in the afternoon, a quick acting medicine similar to the slow release medicine in vyvanse. But he also thought we'd get more bang for our buck by increasing the rispridol.  

We tried both, one at at a time of course, actually increasing rispiradol first as the doctor suggested, but it was the addition of the booster pill that made the biggest difference. Dextroamphetamine, given daily at 3pm has been a game changer for us.  I thought it was neat that Calvin had identified which medication needed to be added. Not sure if it was a lucky guess or he is actually that in tune with how he feels. Either way we're happy for him.

Now, he is by no means cured, but it is good to have made a little progress from a year ago. If we hadn't Calvin would probably not be living with us anymore, as he would have been to aggressive, unsafe and harmful. As it is we have bought ourselves a little more time with him in our home, difficult as it may be I still feel it is nice to have the family together.


PS. It is common that the ADHD medications wear off by mid afternoon.  For most ADHD kids it's not a huge deal since by then they are home from school, but where it so significantly changes Calivn's behavior it is a big deal for him.

medication

It took us a long time to find a good brew of medication for Calvin. Over the last year or so we have played with different meds and dosages until now we feel like we're pretty stable on what we have. We haven't made any changes for several months.

Here's where we're at with meds.

- trileptal 750mg twice daily
- tenex 2mg at bedtime
- fluoxetine (Prozac) 15 mg  in the morning
- risperidone 1.5mg at bedtime
- vyvanse 40mg in the morning

In the morning he takes 4 and 2 1/2 pills and at night 5 and 2 1/2 pills.  It is 7 different prescriptions and it costs $100/month. Most are 10 each but one is a name brand without a generic substitute so it is $40.


We've been on Trileptal since Calvin's first seizure. The dose has increased a couple of times with his growth but he hasn't had any seizures so we are pretty steady at his current dose and won't make any changes unless he has another seizure in which case we'd increase the does a bit.
Side effects:   None that we see, but remember epilepsy is over activity of the brain, so the epilepsy meds SLOW down the brain.  I have a friend whose child was recently diagnosed with epilepsy and she refuses to put him on medication  because the epilepsy medication is "poison". While I completely disagree with her decision, it is true that the epilepsy drugs are not without harmful effects. The epilepsy itself is far more damaging though so we are EXTREMELY blessed that Calvin has not had more seizures, especially considering his definitive brain abnormality on the MRI.

We started tenex several years ago to help with sleep. Before this time Calvin hadn't slept through the night EVER. It was crazy. My wonderful developmental and behavioral pediatrician started him on this. It was life changing for me to get enough rest.  We could probably come off of this medicine with the start of risperidone which in and of itself would probably make him sleep but I haven't dared to try it now that we're in a kind of good place.
Side effects: tenex is actually a blood pressure medication, a vasodialater (relieving high blood pressure). So the main concern with this medicine is that we cannot start or stop it without tapering the medicine or Calvin is in danger of rebound hypertension. Not a huge deal but something to be aware of.

Fluoxetine was the first medication we tried after addressing sleep and epilepsy and started with a new psychiatrist just over a year ago. It is a mild medicine with few side effects and very safe. That is why we tried it first. It would be perfectly fine to be on this medicine for a life time (whereas some of the later medicines have more serious side effects).  We tried an entry dose and bumped up the dose a couple of times perhaps seeing minor changes in mood but nothing significant and also this did nothing to help the raging tantrums we were seeing. 

Risperadone is the drug we were dreading. A couple of years earlier with the behavioral pediatrician she had suggested this medicine but Dave was adamantly against it. So we circled around the issue and ended up having epilepsy start shortly after that and got side tracked with those tests and drugs, hoping that it would "fix" Calvin once the epilepsy was resolved.  Well, obviously that didn't happen so we knew we'd eventually come to this.  Risperadol is a potent antipsychotic medication used for all kinds of psychiatric disorders including bipolar and schizophrenia and given often to autistic kids with behavioral problems.
Side effects: weight gain, diabetes, excessive appetite, excessive sleep and some other more serious ones that are rare but permanent if they occur.


Many years ago we took Calvin to a psychiatrist who was not up to snuff and we tried a few medications, all of which failed for one or more reasons. One of them was a stimulant for ADHD which Calvin clearly has. The stimulant trial was disastrous so we had been hesitant to try something else in the same category. However, that left Calvin as an untreated ADHD individual so it was time to try one more time with the stimulant class.

This time we started on baby dose (an a different mediaction) just in case there was an an adverse reaction. I was opening up tablets and hiding little bits of medicine in drinks each day as we tittered the dose of Vyvanse.  After a couple of weeks we could tell there was no adverse reaction so we went ahead and tried a therapeutic dose of vyvanse. There was an immediate positive effect at home and at school. Calvin was asking for harder work and working longer without breaks at school. I also found him a little easier to live with at home. We were very pleased.

This seemed like a pretty good combination of meds and took us 6 or 8 months to come to these dosages and medicines.

to be continued....one more change in meds months later

memories

One day several months ago I took Calvin and Lexey out to the mall. Calvin wanted to wear his robe.  Several thoughts about this: #1. this is one of the LEAST embarrassing things he has done to me #2. it's not worth even creating an issue over something as unimportant as clothes #3. It is kind of strange at 11 years old that he doesn't  have any bit of the social appropriateness of these kinds of things.  #4. he's darling  #5. The gap widens between him and healthy kids which is hard to see

 

 

Poor thing gets terrible ingrown fingernails. They get really infected and I have to watch him closely. One of these days I'm sure he'll get a serious infection and need to go to the dr. for it.

 

 

sometimes I feel like a bad mom that I don't have calvin wearing glasses or contacts on a regular basis. Especially since we fought tooth and nail to save his vision by patching for all those years.  But I guess I do try. This year before school started I got Calvin new glasses. He had them for about two weeks before destroying them.  You can lead a horse to water but you can't make it drink. Sometimes we get so thirsty around here I forget that I had offered water. Another year without corrected vision. Next year we'll try again. Between now and then I'll try to remind myself not to feel guilty for this failure.

 

blessed are the merciful for they shall obtain mercy

Calvin breaks a lot of things. He rips up the girls homework, piano books and books. He dumps out entire containers of milk, cereal, bread, or whatever he can lay his hands on. He rips up library books, breaks CD's and DVD's.  He has broken his glasses, dan's glasses, Dave's phone, pictures on the wall, cut holes in sheets and clothes. I could go on and on….  We have trouble keeping up with everything that he destroys and it would be an understatement to say that it is a financial burden.   It is also very embarrassing to try to explain to others what is going on. I don't think it's possible to even comprehend even if we did explain.  This week Calvin took a box of ritz crackers and smashed them up into crumbs and threw them all over my car.

Anyway, for some reason today as I was taping up a cover to a CD we rented from the library I was thinking to myself, "hmmm, I wonder what kind reaction I'll get when I return this."  Of course I'm always fine with just buying a new one but I can't really buy just a cover.  I was reminded of an event a few months ago and teared up thinking of this sweet lady in Alberstons.

I stopped at the store to get Calvin a snack. I can't remember the circumstances, but there's a good chance there is a back story…there always is.   Calvin likes the lunchables with a sandwich, called Lunchable uploaded- comes with a bun, meat, cheese, chips, drink and a Hershey kiss.  They are about $4-5.  When we got to the car Calvin opened the bun and it broke. Well, that was enough to cause a complete breakdown.  I decided it would be less suffering to give up $5 more dollars and get a new one rather than deal with upset Calvin so I ran back in to get one more. The checkout lady remembered me and asked if something was wrong with the first one. I told her no, my son accidentally broke the bun and then had a huge fit….so we needed a new one. She told me just to take the new one and that I didn't need to buy it again. But I explained that it was his fault, not a problem with the product and she still offered to give it to me and send me on my way, saying something along the lines of hope the day goes better. I am not a good story teller, but this small act really touched me. Most people are very turned off by Calvin's behavior and react with disgust or fear. It was sweet of this woman to be so sweet about it and have a little extra kindness for both of us. and without pity.  

I hope I can be more charitable with my feelings and actions to my own kids and others around me.

Just looked back and see that I already posted this story...oh well. Now it's here twice.

last day of school

On the last day of school Calvin's teacher Sensei Frank awarded Calvin with a blue belt. Calvin has been doing really well in Karate class and has really improved his attitude and effort. Calvin is progressing very well. We are proud of him and happy he enjoys this class at school. Sensei Frank is an avid Michigan fan so they share a special bond. Also Frank is gifted at working with this population of students.

great speech

I love this speech given my admiral McRaven at the UT graduation this year. Great advice for anyone raising a special needs child or experiencing any kind of challenge, which pretty much includes everyone!  Makes me want to be a better person!

http://www.utexas.edu/news/2014/05/16/admiral-mcraven-commencement-speech/

RAK - random act of kindness

Sometimes to get Calvin to come along to an activity I offer to stop and let him get lunch or something. One day last week I stopped to let Calvin get a lunchable. He likes the new lunchables that have a  sandwich in them.  I can't remember what they are called.  We ran in the store, got the lunchable and then ran back out to the car to get on our way. In the car while Calvin as opening the lunchable he bread broke a little bit. This is the end of the world to him. Once it was a little broken he ripped it up and threw it on the ground and cried. (no coping skills).  So, rather than have a huge meltdown I decided to just run back in and buy a new one so we could keep moving on with our day.  I got a lunchable and ran back into line where we had just been. The checker asked, "oh did you need one more" and I said, "No, we had a little problem." She said, "did you drop it? You can just replace it, no need to pay again."  I said, "Thanks but actually the bun ripped a little bit and my son got really upset so he needs a new one. I will just buy it."  She said,"Oh, absolutely not! If he is upset you can just take this one. No need to buy it again." 

I was so touched by this kindness.  I have to replace something that Calvin breaks or doesn't like several times a week. It is such a frustration to me and such a waste of money all the time...Anyway, this small act of kindness really helped me feel like someone cared a little bit. 

When I was doing the biggest loser fitness competition a couple of years ago we had personal/spiritual goals in addition to our diet and exercise goals. One of the competitors personal goal was: daily prayer, scriptures, journal and RAK.  I had to ask what RAK was, and he told me random act of kindness.  I thought to myself at that time, how much better would the world be if we all woke up each day wanting to do a RAK.  I'm thankful for those whose RAK's are occasionally directed towards my family! 

things that work for me

This blog doesn't really give a picture of the day in and day out life we live and that is probably fine with me.   I feel lucky to survive most days and on a bad day the last thing I want to do is sit down and re live that day by writing it down.

I will say that I reached a point of desperation a few months ago and sought some more help.   First, we started with behavior therapy. After we didn't get any help funding this much needed service, the agency offered to give me a reduced pay out of pocket rate of $50/hour. So I decided to give it a try. We're about $800 into this venture and it has helped some. I can't say it's life changing. I would have rather gone to visit my grandma 3 times with that $, but you gotta do what you gotta do.  one thing we have done is video recorded our morning routine.  It is interesting to re watch those videos and pick up on all the little things going on that you don't really see when it's happening. We spent one day looking at a video with myself and 2 behavior therapists.  They gave me some ideas for how I can improve my interaction with Calvin such as, write down things to talk about so that there isn't as much silence, make sure to initiate a conversation every 3 minutes if there is down time and he is behaving appropriately.  You  might think I'm crazy to not be able to have a conversation with Calvin, but it is more difficult than you might think. For example, let's say Calvin just dumped out  a gallon of milk, ripped up a book and called you a *&@)O. Would you maybe have a hard time thinking of something civil to say?  I consider my morning a success if I don't' swear back and don't scream at him or anyone else.... let alone talking him about something interesting you learned, or asking how is basketball class is going? So, having prompts to talk about help me have conversation to keep us both distracted.

Some of the videos Calvin has watched too, although at this point it is only mostly positive things. They want to get him used to watching himself and grading himself (positive or negative behavior) on simple things before making him watch something unpleasant. Progress is slow and quite honestly I'm not sure if we will ever really make notable progress, but it helps me to have someone pushing me along and trying to help me with his behavior, who is subjective and professional.


I recently starting paying a 17 year old boy from church to come over and play games/babysit Calvin. He often comes while I am at home and I can get cleaning done or run to the store or read a book.  Calvin has some audience control so when Palmer is here, Calvin behaves well. Palmer almost always brings some board games or a wii game from home so it is great entertainment for Calvin.  The girls all love Palmer too!  Palmer has also babysat all the kids at night on a couple of date nights, which has been nice. Prior to Palmer we had only been able to use family, or go out after Calvin is in bed because we couldn't leave him with any cute little teenage girl!   Also, Palmer has a little sister who he can bring over to play with the girls on occasion. 

It is nice to have a day that is a little more relaxed.

I also called a friend to ask "what kind of help can I ask for?"  She helped me brainstorm a few other ideas. She suggested I ask friends with little girls to let the girls come play to get them out of the house a bit and give them much needed happy activity time!  She ended up calling a few friends who were all willing to help. In fact the first two ladies she called both said, "I'll have them one day a week after school, and I am sorry you didn't ask sooner. I wish I would have known Denise needed help."  It was so kind of them. I was picturing setting up a play date or two a month but this was way above and beyond.  It makes me cry to write about it now.  So, two days a week the girls go home with friends to have play dates. That is nice for them. They have lots of energy and need friends to play with but I had recently cut out many of our activities because it is so difficult to go places with Calvin.  It is so kind of my friends to let the girls come play. It works out well for them too as the girls they play with were both in need of more play mates as well.

We got a new family with young kids that moved in a few doors down. They have a 9 year old boy, 6 year old girl and 3 year old boy. They are really nice kids. It has been nice having someone closeby for Calvin to play with. He'll walk over and invite the kids over to play and they will play games or wii. It is great.  Quite honestly it is probably more valuable than the behavior therapy I pay since it teaches proper behavior and gives motivation to behave appropriately in it's own way.

As we prepare for a big move I want to find a way to continue these types of things and will be looking for neighbors and friends for the kids (as all parents would) and also keeping an eye out for some older boys who might want to earn some extra $ by coming to hang out in our house.

blessed

We had our follow up with neurology today. We love our neurologist. If you have epilepsy and live in San Diego you must see Dr. Nespeca. He is worth the wait.  He is quite possibly my favorite dr. that we see for anyone in the family.

Calvin hasn't had any seizures since he was initially diagnosed with epilepsy a year and half ago. We have not advanced the dose of epilepsy medication for 9 months and yet Calvin has remained seizure free. This is pretty amazing considering the abnormality in his brain as seen on the MRI.  We are blessed to have been seizure free for so long. We will continue on this same dose until Calvin does have a seizure and then move the dose forward  at that time.

progress

Today we had Calvin's annual IEP. I was blown away by one section which reported the progress we have seen since Calvin started at cook education center 2 years ago.

"during a 49 day period prior to 3/21/12 Calvin engaged in hitting 136 times, throwing 174 times, disrupting others by making noises 275 times, property destruction 23 times, defiance 70% of the time and attempted urination in the classroom 4 times."

WOWZERS! Life was crazy.

"Calvin has had 2 incidents of problem behavior since the beginning of the 2013-2014 school year"

This is AMAZING. This school has blessed our life so much.  We have only been there 2 years and I had not realized how much progress we have made. We still have much progress to make before Calvin would be ready for a less restrictive environment, but it is so great that he is a "model student" in his current setting.

Other thoughts....either we are super blessed that he has come to this point so that we are in a position to move him to a new school in Houston OR we are crazy to even think about making a change when we've come so far and have so far to fall.  I am trying to move forward with faith that it is the former.

Now that our IEP is up to date we are ready for the next steps in our process.  First, I can fax it to a couple of Houston school districts and see what placement they would recommend for Calvin and then we can go to Houston and see the schools that are a possibility for us. Once again, I'm hoping things look good and we can have a smooth transition to a great new school that will be just right for Calvin.

missed meds

I am usually close to perfect in givig Calvin his meds morning and night. He takes a total of 5 medications. In the morning he takes 3 meds (total of 6 pills) and at night he takes 3 meds (total of 6 pills). (the epilepsy meds are morning AND night, the others are EITHER morning or night. Calvin is sometimes not perfect in taking them - hiding them under the table, throwing them into the grass, dumping them down the sink. Ahh so aggravating. Anyway, one day this week I COMPLETELY FORGOT to give his meds. I blame the overly tired and stressed self due to other kids being sick. Anyway, he had an okay day that day so I though I got by pretty well and felt super lucky. And I found myself doubting why he is taking so much medicine to begin with......

The next day was the fall out. As often happens, it takes a day to catch up with him. It was one of the roughest days we've had in a while. As I was sweeping the kitchen floor that afternoon I noticed one of his pills on the floor. Meaning, he had missed one of the meds 2 days in a row. Luckily for me it was not seizure medicine or one that you have to take daily to stay safe and it was perfectly fine from a general health standpoint to miss 2 days. However, from a sanity standpoint it was a disaster.

Looking back I feel really bad for him that he was so completely out of whack for a couple of days and probably not feeling his best.  Between the two of us, I am not sure who came more unglued. I am sorry to say that I was beside myself with frustration and not nearly as patient as I should have been.

However, the day after the rough day* Calvin cleaned up one of the rooms he messed up which is a 1st. I was very proud of him and impressed that he was willing to do that.

* Calvin messed up every room in the house in a matter of minutes. I have other pics on my phone too but I'm not sure how to put those on the computer yet!  suffice it to say he dumped a gallon of milk, gallon and  gatorate on the floor and tore up a book on the kitchen counter in addition to what is shown below.

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

birthday

Yesterday was Calvin's 11th birthday.

It's kinda crazy to see him at this age -11, where he'd be starting middle school, playing and instrument at school, being in the crossing guard, etc. He is so behind where other kids are. With handicapped kids birthdays totally stink since it is a reminder of how they are not actually growing the way they should, but the years still pass by. That's why we just live day by day.

special needs basketball

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

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

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

concern for siblings

Mean Big Brother (by 8 year old sister)

1 mean brother

2 tared books 

3 hurt sisters

4 broken fones 

5 riped up homework 

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

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

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

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

lost battles

One of the difficulties we face with Calvin is that he has somewhat of an orphan disease. I've never met anyone with the same diagnoses as him. I am sure that in the special needs world as with the typical kids world, no too kids are alike.

However, when dealing with problems it is helpful to have a  community to draw support from and so that insurance will acknowledge the need for services and pay for them. This is where we are flailing.   Insurance will not cover ABA, we applied to the regional center and they will not accept Calvin, even though the need for services (such as ABA therapy, respite care) is apparent. The neuropsyciatrist we see is not covered by insurance. I called insurance to ask them to provide another similar doctor and they don't have one in san Diego but still refuse to pay for me to see the type of doctor we need.  

I was so grumpy over these losses that I have not really considered where to go next and took a couple of months of vacation in thinking about these issues. Now, I'm back in the game and ready to move forward.

We got a great offer from one of the ABA agencies in San Diego for an out of pocket payment (still hurts though) for some ABA services. We're going to start that up pretty soon.

 Regional center will have to wait and luckily we don't see the psychiatrist as often as we used to so even that cost is significantly reduced.

special education bussing

We have been so blessed to have Calvin ride the "short bus" to school for these last almost two years.(if you laughed at the phrase "ride the short bus" that I'll assume you are a bad person. I have one brother and one husband who can't say short bus without laughing and I am sorry to say they are not ideal human beings.)

Overall it has been wonderful and we and met some amazing people. We have also run across a few people who are not quite as wonderful as those who you usually find working in the special needs department!

Calvin has also been creative in finding ways to make the ride to school as unpredictable as possible!  Here are some of his tactics for throwing a wrench in what could be a smooth bus ride...
-don't get on the bus when it comes to pick you up
-don't get off the bus when you get to school
-fall asleep on the bus and don't get off the bus when you get to school.
-pretend to fall asleep on the bus and don't get off the bus when you get to school.

We've never had a problem with him getting off the bus at home although occasionally he is asleep on the bus ride home and we have to wake him up to get him off the bus.

With those last 3 options, the bus driver would at first bring him back home, but that is too rewarding, so then they'd wait at school but that took too long and the district didn't want to pay them overtime, so now we meet at the bus yard. When they call me to tell me Calvin is still on the bus I have about 25 min to get there giving me time to load the car and head over. It is just right. Then I drive him to school which is sort of a pain but we make the most of it by going to the beach or zoo afterwards.

Remember when Calvin's bus driver hit him?  That driver is no longer in special needs! Crazy!

After that incident we had the best driver ever, Kevin! He genuinely loved Calvin (which is tough to do)!  and was so great. He'd do a doughnut day or in-n-out day here and there just because he wanted the kids to feel special.  He got "out bid" by a more senior driver so we haven't had him this year.  We miss him terribly.

Calvin's aid Jeannine has been with us for a long time, over a year. She is so kind. Calvin adores her.

Calvin's current bus driver is fine...neither great nor terrible. We did have an interesting experience today though. She pulled up the house! I opened the door and waved hello as I usually do and then she drove away down the street. Weird?.... I walked to the end of the driveway and as she looped around to pass our house she slowed down and said, "he won't get up I'm taking him back to the lot."  WHAT?!  I said, "no, I'll get him off the bus."  I walked onto the bus and woke him up and got him off the bus. It was funny. He wasn't mad or angry, he was asleep with his head phones in and never heard her stop or tell him to get up. She was completely furious and fuming. Must be an off day....hopefully she isn't losing patience with him....that would be an unfortunate turn of events.

What's funny is Calvin wasn't mad or trying to be difficult, he was sound asleep with his headphones in and his shirt wrapped around his head so he had no idea they had even stopped and tried to get him off the bus.

It is interested how as an observer I can see that this was an incident where Calvin was innocent but somehow managed to get the driver in a fury. I know this happens to me at home. Since he does cause such a rukus so often and puts people on their guard it is easy to be upset with him often and assume he is trying to cause a problem but the trick is slowing down enough in judgment to see what his intent is and working with him to move forward. A galaxy sized amount of patience is required. I'm still working on growing some more!

great article

How to encourage a special needs mom if you aren't one.

another month has passed

Things are fine. Life is life.

Ups and Downs...


UPs:
-that we are fairly stable on the meds we have now so we don't have to go to the psychiatrist again for a couple of months.

-Ask for a handicapped sticker at amusement parks if you can! It is the best. We went to Legoland and got one last week. Great to get a little perk here and there when you have a lifestyle that is difficult.

Downs:
-One of the biggest challenges right now is date night with my husband. I can't get a babysitter (aside from my dad who we cannot abuse too much) and it stinks not being able to plan a date when needed. we often trade with a friend after kids are in bed but with the holidays we've missed a couple of months. Hopefully we can get back into the swing of things soon.  I have a gift card to Flemings that I got in the summer that we still haven't been able to use.

-We are supposed to move from San Diego to Houston this summer. My stress is going to overflow trying to plan this move for this child.  I try really hard not to feel sorry for myself but this situation is difficult for me.  I keep thinking "If I didn't have Calvin, this would be so easy. We could just pick where we want to live, find a school for the girls and have so much fun with and year of adventure in Texas....instead we have to find a school for Calvin, pay $40K for tuition, live close enough that I can drive him to school, worry about neighbors listening to him scream and calling the police on us and be in financial ruin after moving twice in a year and financing his school....."  I suppose I should count my blessings and be super thankful that we are going to a big wonderful city where there are schools available.  And have faith that it will work out. I know it will. I have a lot more to research and much more praying to do. I am sure it'll work out.

-Jo, my two year old is feisty as they come. She now has more emotional maturity than Calvin. Which is sort of funny, but also sort of sad. She is only two. Recently in the car Calvin was very upset and grumpy. Jo was teasing him by singing. (When he is upset he likes everyone to be silent and all noise bothers him) he turned around and said "F$*& you, Jo" and she said "F(&^ you, Calvin" right back. I couldn't help but laugh.