Friday, November 24, 2006

Retainer Success!

Well, yesterday Lucas got his new removable retainer. And it was a success!

He has worn a removable before, for almost three years. However, after all the drama trying to get the cemented-in retainer in his mouth, I worried he might be so orally defensive he wouldn’t take the removable one either.

But he did! *Happy Dance*

By the evening it was bothering him a bit. He did some whining, but kept it in his mouth.

He got his gameboy back too. I am so happy about that!!!

Tuesday, November 21, 2006

Funny Lucas

Funny Lucas

There has been a commercial on TV lately for ‘moon boots’. These are boots with springs in them that apparently ‘fight gravity’ so you can jump really, really high.

(I remember this product from when I was a kid!)

On the drive home today, Lucas starts telling me how stupid ‘moon boots’ are…

See, if they really did fight gravity, then you’d go up through the atmosphere. You’d get to see space for about three seconds, then you say, ‘Oh! I’m burning because I’m in the atmosphere’.

So either they are lying, because they can’t fight gravity, or they are telling the truth but using them will kill you.

I guess that recent unit on space really taught him something :P

Sunday, November 19, 2006

Lucas's Awesome Night!

So cool !

Lucas just got home from a Canucks game! He got to sit in BOX SEATS! And he got a t-shirt that said ‘Nazzy’s Suite’ on his shirt – for Marcus Naslund. He is going to gain some serious status among his hockey-fan friends for that shirt.

He got to go courtesy of The vancouver Canucks and Zajac Ranch. Zajac Ranch is where he went for Cleft Camp for the last two summers.

It’s cool when he can get to do something special and fun, that we would never be able to otherwise provide for him.

I know that a cleft lip and palate is not a life-threatening, but it is life long. Lucas often comments that people don’t like him because of his lip – and whether or not it’s true, it’s clear that he is very conscious of looking different. He also has high anxiety levels and far too much familiarity with the medical facilities in town. This past year he has had appointments sometimes as often as four times per week.

It’s such a nice break in it all when he can just be on top of the world, celebrating and enjoying life without having to worry for a short time. He’s not thinking about being different, he’s not thinking about any upcoming appointment or procedure, he is just flying high on the exhilaration of the night’s events.

Thank you to The Canucks and Zajac ranch!!

Wednesday, November 15, 2006

The Bus Is Here!

I guess I didn’t need to worry about Coram getting on the bus this morning,.

It was actually really refreshing – I might even call it a ‘normal’ morning.

We were busily getting everyone ready, packing lunches, getting clothes out for Lucas, and so on. Coram was all ready and waiting by the door. Usually I wait with him, but I hadn’t completed what I was doing.

Suddenly Coram pipes up, ‘The bus is here! Bye!’ He puts on his backpack and runs out the door.

He didn’t even look back!

That was truly amazing.

Tuesday, November 14, 2006

Retreat-ed

This weekend I was lucky enough to be able to go on a retreat. It was a scrapbooking retreat, but it was really small. There were 5 of us, all women who know each other well. The retreat was in a cabin in Whistler, which was beautiful.

It dumped snow on us, which made our cabin seem even more remote and surreal.

It was very refreshing and relaxing to just get away from it all.

Of course, the kids had two extra days of from school – one for the Remembrance Day holiday, and then a professional day. So I came back refreshed and am exhausted already. But it’s all-good. I’m really glad I got to go.

I also got some great work done on our wedding album. It’s been over two years, and it really was more than time to get cracking on it.

The boys did relatively well. They had some free tickets to an advance screening of ‘Happy Feet’. They enjoyed it, but not so much the bus ride there and back, since I had the car. Coram had a big meltdown on the bus, and a passenger gave Steve a hard time about it. But he put her in her place and she sort of apologized. Gotta’ love people for their opinions.

It will be interesting to see how the boys do tomorrow, going back to school after such a big break. Fingers crossed it’s not a problem.

Thursday, November 09, 2006

Good Cat, Bad Cat

Ugh.

We have mice.

We also have cats.

The cats have been killing the mice.

We are happy about that.

We have been coming home at the end of the day to a mouse carcass, or waking up in the morning to a mouse carcass. They are presented like little trophies on the kitchen floor.

But today, they decided to kill one while I was home.

What a horrible thing to witness.

I don’t think I have ever heard a mouse squeak before. But I just overheard a mouse squeaking for its life as the cats toyed with it, slowly killing it. They batted it around; they chased it under boxes, and they tossed it in the air. All the while only giving it small bites so as not to kill it.

Now, I know this is the nature of things. I know this is how cats hunt. I know that I ultimately want my cats to kill the mice.

But my stomach is in knots. I never, ever EVER want to witness that again.

Tuesday, November 07, 2006

Long Update

So much has happened it’s been hard to update.

We have had visits to Lucas’s entire cleft team, as well as our psychiatrist and the councillor Lucas sees. I had an appointment every single day the week before Halloween … either for myself or one or both boys. Halloween itself was fun but very busy. More on that later.

Here is a rundown of Lucas:

Orhtodontist: We got a prescription for Ativan, and made one more appointment to try to put the expander in Lucas’s mouth. He refused to take the Ativan. I tried to hold it under his tongue by force (bad mom, I know, but I was desperate) but he spit it at me. We were not successful getting him to even sit in the orthodontist chair for the expander. We had to follow through on our deal, and take away his game boy. We have decided to try to go back to the removable expander, and Lucas can get his game boy back if he co operates with that. I am hopeful, since he has had removable expanders before, and knows what to expect, so is likely to co-operate.

Speech Pathologist: Lucas’s speech has improved since the last time the speech therapist saw him. He still has nasal air emission on his /s/ sounds, but no longer has any on his plosives, which are the /t/ /d/ /b/ /p/ sounds. She was pleased with the change, but wants him to have some speech therapy to help him remember to send his air out his nose for his /s/ sounds. He can physically do it, but he needs to be re-trained. In her words : ‘Imagine if I told you the way you had been doing a /p/ all your life was wrong…it would take you a lot of practice to learn the right way.’ The reality is that the school board, who is supposed to be providing him speech therapy, doesn’t have the resources to provide it to him, since he is very intelligible. They can only help the kids who are desperate for speech therapy, which Lucas isn’t. We will have to go privately. The speech therapist is going to help us with an application to Variety for funding in the spring. We just missed the fall cut off date for applications. It’s nice that she will help with the application – it takes some weight off of my back.

Ear, Nose and Throat: Lucas has one tube out and one tube in. The pressure in the ear with the tube out is normal, indicating that there is no build up of fluid. There is also no hearing loss at this time. So we don’t have to rush in to replace the tube. That’s a relief.

Plastic Surgeon: The plastic surgeon has put it out there for Lucas to consider having some work done on the tip of his nose. We all agree that since it is not a functional issue, it is up to Lucas if he wants to proceed. The surgeon said he is sure he can help the nose look better, and that it would be a day surgery. Lucas seemed a bit interested, but declined to decide. I am not at all concerned about his nose, so its up to him.

Psychiatrist: We are trying to move Lucas from Dexedrine to Stratterra. I am looking forward to not having the side effects of the Dexedrine: namely, the sleep issues and the lack of appetite. So far, we have added the Stratterra but not backed off the Dexedrine. The psychiatrist said that if we are going to give him meds, it makes a lot more sense to give him the best meds available. I tend to agree. It’s always hard to make a med change, but I think this one is necessary.

Here is the rundown on Coram:

Coram has been doing extremely well. He has not missed a day on the buss or at school for three weeks at least. There was one day last week where he was saying he wasn’t going to go, and grumping about the house all morning, but when the bus came, he ran out and hopped on. It was real progress for him. His home notes all indicate that he is focused, more positive, and completed more work. I am feeling a bit less tied to the phone, as it hasn’t rung to tell me of an emergency for some time now.

Here is the rundown on Halloween:

Wow, did Halloween ever become a huge event. We went to the train park up at moms, and went on the ‘Hobgoblin Express’ train. They had a scary haunted train car that only Grandma went through, and another one all decorated for kids. They also had a mini train that went around the train park, and the route was all decorate with pumpkins and lighted decorations. It was nice because it wasn’t at all crowded like things in the city. The next night, we went on the ‘Ghost Train’, which is the local Halloween train. This one was extremely busy. I had to go at 3 and stand in line for an hour to get tickets, and by then the earliest train was 7:30. We went with grandma and Jama, Sky Keith and Aiden, Uncle Tai and my cousin Jordan. It was a good time. Lucas was really funny – he said there was going to be a giant frog, and we all laughed at him. But he was right! I have no idea how he knew that.

In the middle of all of that, Steve’s boss gave us tickets to the Canucks Super Skills show. This is the first time we have seen the Canucks live, and it was a lot of fun. They compete against each other at skills like speed skating and slapshots.

On Halloween night, we went to moms to trick or treat. It’s a bit of a drive, but the kids like going there because they like to trick or treat with Jama, and they like the neighbourhood. It was super cold though. Coram had a really hard time with it. He had a meltdown because he didn’t want to put a jacket over his costume, but he didn’t want to be cold. It was hard for him – he was completely immobilized by being upset. The really good part is that he was able to recover. He came inside, had a big cry, then calmed down and went out. In the past, he would have been upset about how much time he missed, and not gone at all. So in all, it was a success.

And that’s the uber-long update. The days are whipping by as we proceed towards Christmas. Lucas has been invited to go to a real Canucks game with the organization that ran his cleft camp. He is pretty excited about that. I think it’s cool he’s getting some special treatment to distract him from the misery of appointments, orthodontics, and surgeries.

Thursday, October 19, 2006

Words from God?

Lucas got a little spun out this afternoon. He was doing this thing where he would say,’ Coram is chasing me’ and then run away. Of course, Coram would chase him then. Lucas would go off screaming that he wanted to be left alone.

I don’t think so. If you really wanted to be left alone, you wouldn’t be egging your brother on.

So we spent some time trying to calm him, and ended up separating him. I was holing Lucas, and we were having a visit, and Coram came toward us. Lucas up and kicked him.

We sent Lucas to his room for his usually 8 minutes.

Now, Steve brought home a show from work, and was telling Coram about it. The show is ‘Over The Hedge’. Lucas heard this, and begged to come out. We won’t let him come out until his minutes are up.

So he says…get this…

‘God wants you to let me out of my room!’

Wednesday, October 18, 2006

Cast Off

Today we finally got Coram’s cast off!

That was six long weeks I tell ya. Though the waiting room seemed to take even longer.

We waited in the waiting room to be called and sent to the x-ray room. Then we waited in the x-ray waiting room. Then they called us to take us to a different x-ray room (to speed things up apparently) and we waited in that other waiting room. Then we got our x-ray and went back to the first waiting room.

When we were finally called, we were brought into a small private office where we waited another twenty minutes. We saw a resident who said everything looked great, but said we would have to wait to see the doctor.

In all it was two hours we spent there, with about 6 minutes speaking to the actual doctor.

The doctor skipped us to see a small boy who came in after us. I know he came in after us, because his mom kept complaining about how long the wait was, that their appointment was for 2:30, etc. It really bothers me that they skipped us to see them because of a complaining mother. The child wasn’t even complaining, or being noisy, or anything. He just played quietly while his mother ranted ‘I can’t sit here another half an hour!’

I mean, sure he was young, but Coram was having a MUCH harder time with the wait. When we did see the doctor, she was so obviously over-worked that I didn’t feel like I could say anything, though I really wanted to. She made an assumption based on age that my son could wait, which he couldn’t. He was dangerously close to losing it, and I was worried he might not comply when it because time to take the cast off.

However, the idea of having the cast off his hand was more exciting to Coram than worrisome, and he did comply. He sat watching detachedly while they sawed off his cast. There was gross dark yellow dead skin everywhere, but Coram was more fascinated than anything. I took him to rinse his arm off, and as soon as the water ran on him he said, ‘I need a new cast on!’ That boy doesn’t like change at ALL.

He is looking forward to going swimming on Friday with Boys and girls Club, though. In the car on the way home he pointed out that the timing is good because he won’t have to wear a plastic bag to the pool. So it didn’t take him long to get used to not having the cast on.

Me, I am just relieved I don’t have to look out for the weapon on the end of his arm anymore. That thing was fibreglass, and an accidental bonk or scratch with it would really hurt.

Tuesday, October 17, 2006

The Ortho

Lucas got the separators in his teeth today, in preparation for the expander. Fingers crossed he actually follows through. The staff at the orthodontist’s office calls them ‘seps’ but Lucas told me he doesn’t want to use that word because it sounds too much like sex. I picked him up from school, and he asked why and I said ‘for seps’ and he was extremely upset.

There were two babies at the orthodontist office with clefts. One had a unilateral and one had a bilateral. I was transported right back to those early days, sitting in the office with the Mead Johnson bottle, squeezing milk into Lucas’ mouth.

I wanted to reach out and help, but one of the moms avoided eye contact, and the other one was gone minutes after I got there. I don’t really know how to bridge the gap, so to speak. To them I am foreign – I remember quite clearly what it was like watching the moms with the older kids at cleft clinic. The older kids just seem so removed from that fragile little baby that you are preparing to hand off for the first surgery.

I can’t assume some sort of ‘sisterhood’ with other moms of cleft affected babies. Just because we have that shared experience, doesn’t mean that they want to hear from me. They may be private people, so I find myself waiting for them to speak to me.

Falling Asleep

There’s something indescribable about watching your child fall asleep.

I remember feeling that when I had infants – that those seconds when they drift to sleep are precious to watch. I had no idea then that I would feel the same way now.

In fact, I get to watch that moment so much more rarely now, that it is almost more special.

Their little faces take on a serenity that I can only call angelic (even though that’s cliché and I hate sounding cliché, it’s just true). Their mouths relax and become the soft little mouths I remember from when they were infants.

I also notice that the positions they chose to curl up into in those moments before sleep sets in are often exactly the same ones that they curled up into as infants.

It makes me wonder if it ever changes. I wonder if my own mom would see Baby Jewel juxtaposed on adult me in those moments before I drift into sleep.

There’s magic in those moments. They are a reminder of the tenderness with which I must handle these children, as they are still my babies. They are a reminder of what a gift I have in each of my children. They are a reminder of the awesomeness of being a mom.

Thursday, October 12, 2006

A better week.

This week has actually gone fairly smoothly. Coram has gotten on his bus daily, and made it home on the bus. We have had a couple of meltdowns at home in the evenings, but for the most part his days have been good at school.

Except for today. Today another boy in his class decided to show his genitals to everyone. Coram decided to copy. I don’t know whether it’s really ‘fair’ that Coram got an incident report for this, since this wasn’t his idea. But I suppose he should have known better, too.

Lucas had his first visit with his councillor. I think he really liked it. He wanted me in the room, which was fine. That place is really relaxing. Every time we go there I come out feeling refreshed. I hope Lucas feels good about it too.

Lucas has started building with Lego feverishly. He saw a website with some really cool Lego Pokemons on it, and it fired his imagination. He has been building almost non stop. At night I often find him out of bed building Lego. He tells me he is going to ask Santa for ten big bins of Lego for Christmas. I don’t’ know if Santa can do ten bins – so if anyone else needs ideas, Lego is it for Lucas.

Wednesday, October 04, 2006

School daze

I had a call today from Coram’s school. I gather he had been chasing another child around the gym, and refused to leave when asked to return to the classroom. The two aides in the classroom are both injured right now, so they had to get the vice principal to physically remove him from the gym and return him to the class.

They wanted me to come and take him home, but I didn’t get the message right away. By the time I called back, he had settled down. They told me to be prepared to come and get him if he refused to go on the bus.

Thankfully, Coram did get on the bus and come home, and has been in a fantastic mood today.

What I really hate is that I just can’t take a morning off – I have to be reachable at all times.

When you have a small child, say a toddler or a preschooler, parents of older children always say how much easier it will be when your child starts school. Many moms find part time jobs to work during the school hours, or they get regular time to go to the gym, or have coffee with friends. Whatever they do, they are kid-free and worry free for the school day.

With two boys 14 months apart, I was waiting for that break that would come when the kids started school. I don’t think my body ever recovered it’s strength and stamina from back to back pregnancies, back to back sleepless nights and two babies in diapers. I looked forward to some ‘me’ time while the kids were in school. I also looked forward to being able to bring in some income, and alleviate our financial woes.

With Coram, I don’t get that break. I can’t have a job, or be at the gym, or be anywhere where I’m not immediately available to recover my child from a situation that has spun out of control. I don’t know if it would be easier if people hadn’t told me how wonderful it would be. But it’s not. Wonderful, that is.

Tuesday, October 03, 2006

Ring Ring... Hello?

Lots of phone calls today. I had to get Lucas an appointment with his cleft team, confirm his ENT visit tomorrow, and set up orthodontic appointments for him for next week. I called to get the ball rolling on Autism funding for Lucas and called to get information about a parent workshop I heard about coming up. I also spoke with the gal at Coram’s psychologist briefly.

The good news: Lucas seems ready to put his expander in his mouth. We don’t know if it will fit, however. There is just no way we can know until we get there and give it a try. Either way, I am going to get him his gameboy back.

More good news: Coram’s psycho educational report came today. They had said they would not send it until we were finished paying, but it arrived. I am so pleased that I can get things moving now.

The bad news: We have slightly less than ¼ of our rent, that was due two days ago.

That’s the beauty of trying to pay for an assessment privately. Everything got so far behind, we were about to lose our phone and power – so I had to use the rent money to pay them off. It’s so hard to get caught up after any kind of lapse.

Coram has been doing well with both getting on his bus and behaving at school. It’s nice to have a string of positive reports coming in when he comes home.

Wednesday, September 27, 2006

Wednesday

Today was early dismissal for both boys. Coram’s bus came, but he didn’t manage to get on it. It was sad actually. By the time he figured out he wanted to go, the buss was driving away. He chased it a bit down the road, but the bus didn’t stop. I gather they have safety laws that they aren’t allowed to stop again. He had this really forlorn look on his face when he realized he had missed it.

The upside is, he hopped right into class as soon as we got there. I didn’t even go in the building. This despite the fact that there were workers belt-sanding the building and it was REALLY loud. That’s the kind of thing that would usually upset him. He knew the class was having a popcorn party, and I know that motivated him. I’d like to think he also is getting more used to the idea of going to school.

Coram’s teacher was speaking with me last week about the possibility that this might not be the right class for him. She had good reasons, mainly that his needs are different than the other kids, and he takes two adults when he is having a fit leaving only one adult for all the other special kids. However, I’d be lying if I said my heart didn’t sink. I really don’t want to have to move again. It’s hard to get used to a new classroom, a new group of kids, new teachers and administrators, and a new routine.

I consider myself to be fairly accepting, and flexible to what the teachers want to try. However, even I hit blocks of resistance in myself. I can’t imagine what it would be like trying to deal with a parent who refused to believe there was really a problem. I have teacher friends who have dealt with those kinds of parents, and it’s really sad. The biggest victim is the child who doesn’t get the help because the parents refuse it. I don’t want to belike that, I want to help and listen and try as much as I can to work as a team with the teachers. But my back seems to go up whenever someone suggests moving him on to another class. I just want someone to dig in and commit to helping this kid get through school.

I applied to a local charity today for respite care. I don’t know if they offer care to families like ours, as they say they help kids with ‘progressive life limiting illnesses’, and I‘m not sure if we fit that, but it was worth asking. So far I haven’t heard anything back.

Success Today

Today was a pretty decent day.

Despite a 48-hour suspension from his bus (stemming from an incident last week I didn’t have the energy to blog about), Coram was able to have a successful day at school. I had to drive him in, and that means he misses the first half an hour because of timing of dropping Lucas off. We have never once had a successful day after I drove Coram to school.

But today, we did.

It wasn’t easy. I had to spend some time in his classroom, answering questions and letting him show me around, but he did get to the point where he gave me a high-five, a hug and a kiss, and I left.

I spent the day doing some housework and resting, I’m still pretty sick.

When I picked Coram up, his teacher said he had an awesome afternoon. Despite making a face and saying he didn’t want to do work, he was the first in his class to be finished. Coram was beaming.

We picked Lucas up and came home, and they hung out together. They played some cars, watched some TV, and messed about with my new raspberry hand cream. I didn’t really mind – they just wanted to use a bit because they liked the smell.

I’m sure it won’t be long that my sons will want to smell like raspberries, so I should enjoy it while I’ve got it.

IN the evening, as Coram got tired, he began shouting at me again about my ‘sleepy voice’. I just stopped talking to him. Steve and Lucas both stood up for me. I really don’t know how to handle the ‘sleepy voice’ issue, since I can’t change my voice and I don’t believe I deserve to be screamed at.

But it was only an hour or so of torture, which, in the scheme of things, is a good day.

Steve started a blog today with computer tech advice. I am trying to figure out some of the editing so that it doesn’t show the ‘about me’ info. If anyone has any tips, I’d love to hear them.

Monday, September 25, 2006

Sleepy Voice?

Apparently I am using my sleepy voice.

I am sick. We all are. I gather my voice shows that I am sick.

Coram is screaming at me that I have to stop using my sleepy voice.

I have no other voice to use.

‘STOP USING YOUR SLEEPY VOICE!!!!!!!’

Thursday, September 21, 2006

A New Start

Yesterday Coram had to get a new cast.

I took him to Children’s to have a follow up visit. They did an x-ray, and determined that his current cast was too loose. They said it’s quite common, and is a result of the swelling. His cast was tight when they cast it, but his arm was swollen. The swelling went down, and now the cast is too loose.

The x-ray also showed that there is more of a buckle to the break than we originally saw. The doctor said it might be from the angle of the x-ray, and it might have gotten worse since the first x-ray.

He explained to me that this was ‘acceptable angulation’. What this means is, in young kids, this amount of angle in the bone will heal itself. He said I will mould itself straight again within six months to a year. The same kind of angulation in an adult would not fix itself.

It was amazing watching Coram. He was calm through the x-ray, and calm while they sawed his old cast off. They had this contraption with a saw and a vacuum together, and it made a big buzzing sound. Lucas ran out of the room, and couldn’t watch. Coram just watched in interest. I’m not sure if even I could have been as calm as that with a saw going through my cast.

We thought the cast would be off for good next week, but the doctor said this new one has to be on for four weeks. So I’m of to make a new cast chart for us to mark off the days.

Wednesday, September 20, 2006

Playland

We went to Playland on Sunday. I would have written about it sooner, but we have been sick here.

Playland was awesome. The boys have been asking for years, and I have been putting it off. I think the timing was perfect this year though, because they were tall enough to go on the rides by themselves.

I went on a few rides with the boys before I hit my ‘sick limit’. I went on the swings a few times, and the roller coaster and the Ferris Wheel. Then I went on a ride called Break Dance and, well, it broke me. The cars spin in their frames, which spin around on the base, which also spins. I can’t actually imagine anyone enjoying the ride, but Lucas did. He went twice. I went once and it was the last ride of the day.

Lucas was amazing. I had no idea what a little daredevil he was. He went on lots of rides that I wouldn’t touch with a ten-foot pole. He even went on a ride called ‘Hells Gate’ which was insane. It flips upside down three times really, really fast. Lucas sat there, his orange hair blowing back from his pale forehead, wearing a huge smile. I really could not believe it. He did draw the line at the Hellevator though. He said it just looked too scary. Go figure.

It just goes to show how much our kids really are their own people – because he didn’t learn that from me, and certainly not Steve. Steve made it on one round of the swings and that was it for the day. In his words, he hates being in the air.

I think the coolest thing of the day was how happy the kids were. They seemed so free and content. They had huge smiles on their faces all day. There were very few line-ups, as it was raining slightly so the boys could go on any ride they wanted, and usually stay on if they chose. They would wave and smile from way up in the air, or call hello as they went spinning by. There was no bickering, no whining, and no complaining.

It was a perfect memory for us to have of our first family trip to Playland.

Wednesday, September 13, 2006

Welcome Back

Today was the welcome back barbeque at Lucas’s school. Steve wasn’t feeling well, but the boys and I went. It is always nice to see old friends and chat with other parents.

It feels kind of sad this year, because it is Lucas’s last year there, and since Coram is no longer there, it means this is the last barbeque we will be going to.

I am sure that whatever school we chose to go to next will have something like this – but it is always hard to think about saying goodbye.

In other news – we still don’t have a retainer in Lucas’s mouth. His gameboy is still at his orthodontist’s office, and he hasn’t come to the conclusion that he will co-operate. I really hope he does before his mouth changes too much to use the current appliance.

We went for an iCAT scan for Lucas on Monday. This is a really new and high-tech scan of his head, which provides a 3D picture for the dentists/orthodontist/oral surgeons working on him to have an extremely accurate picture. We waited three months for the appointment.

When we got there – Lucas refused to co-operate. We spent half an hour trying to get him to sit still, then gave up and came home. We even did a ‘dry run’ so that he could see what the machine was going to do and know that it wasn’t scary. He laughed and said, ‘Is that all?’ But he still didn’t do it. The technician was not at all happy. She said, ‘ I’ve had about as much as I can take.’ I guess that was my cue to stop trying.

I gather we need to just back off on the orthodontic stuff for a while. However, Lucas needs bone graft surgery next year, so we don’t actually have unlimited time.

I guess I need to just stop worrying and let it be.

Friday, September 08, 2006

The saga continues…

Yesterday at the orthodontist, I am not proud to say I resorted to threats of consequences to get Lucas to allow them to put the expander in his mouth. The final consequence I had offered was taking away his gameboy,.

I am not proud of it, but I upped the ante and told him I would have to sell it to pay for the wasted expander. The orthodontist said not to sell it, just to give it to her. So that was what we agreed.

We went back the today for another try, bringing the gameboy. Lucas this time refused to even lie back on the chair. We spent an hour and a half trying to talk him into it. The orthodontist said she usually would not bother after one refusal, but it was so important for bone graft.

We left without the expander, or the gameboy.

I am at a loss. I don’t like using threats to get my kids to do things, and it feels that much worse that it didn’t even WORK.

He can have the gameboy back if he decides to go in next week and put the expander in.

The orthodontist isn’t really interested in keeping the gameboy, she just wanted to impress upon him how serious this is. She said that even if we don’t get the expander in, he can come and apologize to them all next week and have the gameboy back.

I feel like a candidate for the worst mother of the year award.

Thursday, September 07, 2006

Sigh and Sigh again.

Today was supposed to be my rest day.

To be fair, I did putter for the time that both boys were in school. I picked up a package at UPS (walkie-talkies free from Airmiles! Yay!) And hung out at my house doing nothing. It was nice.

However, if I felt refreshed after my time to myself, the feeling is vanished now.

I just got back from taking Lucas to the orthodontist. It was supposed to be a quick half hour appointment to put in the appliance they made from yesterday’s mold.

The dental technician was able to put the appliance in and make sure it fit well, and do a thorough cleaning of his teeth.

But when she put the glue on it, Lucas dug his heels in. He absolutely refused to open his mouth.

We spent a half an hour answering all of his questions, over and over again. He was afraid it would hurt, he was afraid it would take too long, he was afraid he wouldn’t be able to talk. He wanted to know if there was any other way to do the expanding. He was afraid of the blue light they use to set the glue.

I think we addressed each question at least 10 times.

I offered him stickers on his reward chart, and a package of Pokemon stickers. I upped the ante to two packages. Lucas agreed, but wanted all of his questions answered again – the same questions. Then, he lay down but refused to open his mouth.

He bit the orthodontist twice.

I told him I was going to change from offering rewards to offering consequences. I counted to five, then offered the consequences. The orthodontist explained that the retainer cost $300, and that was what he would have to pay back if it was wasted. I told him the first thing we would sell would be his gameboy. This was really the first reaction I got out of him.

We ended up there a total of an hour and a half. We didn’t get the retainer in. We have to go back tomorrow.

Lucas is now in his room, banned from TV, radio, CD player, games.

I feel like the absolutely WORST mother in the world. I hate that I had to resort to threats and punishments. I hate that I kept four different employees late at the orthodontist and still didn’t accomplish what needed to be done.

I want Lucas to truly understand how disrespectful he was to everyone. Myself, the orthodontist, and everyone who tried to help him. I want him to know that the time spent over the last three days preparing for this appliance was worthwhile time, and that he wasted it by refusing to put the retainer in. I want him to never, ever do this again.

But at the same time, I worry that I’m being too harsh.

I am validating that he is scared, that he doesn’t want to do it, that it’s not fair. I am validating that he is scared. Then I firmly tell him that this is something we have to do, even though we don’t like it. I tell him that it will be over in two minutes, and I remind him that I have never lied to him – if I say it won’t hurt, it won’t. I always tell him when something will hurt.

But none of that worked. I ended u using threats and even that didn’t work.

I hate this job. This unpaid, thankless job.

Wednesday, September 06, 2006

Scrambling

Today was Coram’s first day of school.

With the trouble we had last year, we were quite concerned that he would have a hard time getting on the bus in the morning, but he didn’t.

He was so excited, waiting by the door. He asked to wait outside in the yard, and took some bubbles with him. He happily blew bubbles until the bus arrived, then hopped onto the bus no fuss. He waved as we drove away, and then he was gone.

It was such a relief.

I thought I would spend the day resting, doing scrapbooking , and generally having some down time.

However, I forgot that Lucas had an orthodontist appointment at 9:30. I missed it. Because what was being done today is time sensitive, we had to squeeze it in today. So, we moved it to 1:30.

I spent and hour playing phone tag to set something up for Coram, since I wouldn’t be here when he got home, and Boys and Girls Club is mysteriously closed today. I had Grandpa all set up to keep him, but needed to arrange for the bus to drop him off at a different place. You’d think this would be as simple as calling the bus company, but nope. I had to call the school board liaison, leave a message, wait for her to call the bus company, and wait for her to call back.

Finally, after just over an hour, we had it all set up. Coram would be dropped at his grandpa’s house at about 3:15. I called the school and left a message asking the teachers to prepare Coram for the change, so he didn’t panic when he was taken to his grandpa’s, having been anticipating being taken to his home.

Then I got a call saying that it was early dismissal today.

Yikes. Coram was getting out of school at noon instead.

Spent another hour re-arranging the details, so that Coram would be dropped off at his grandpa’s at 12:45.

By this time it was 12:00. I had to leave at 12:20 to get Lucas to take him to the orthodontist.

So much for my restful day.

Tuesday, September 05, 2006

Yikes!

Wow.

Well, yesterday Coram seemed to get a kick out of the novelty of his bright red cast.

Today, first thin in the morning, he says, ‘I’m gonna take my cast off!’

We didn’t think he could. I mean, these things are supposed to be built like a Mack truck, right?

Wrong. He could. And he did.

Now I’m off to the ER again to get him re-cast. Steve is going in late to work so he can get Lucas to the first day of school.

Am I the only one who has ever had this happen? The incredible kid who managed to take his cast off? Please, tell me no. Please tell me others have gone through this madness.

Monday, September 04, 2006

This is How We Spent Labour Day...

One of the recommendations the psychologist made for us regarding Coram was this: get him a chin-up bar.

This is because he spends a great deal of the day trying to hang of myself or Steve, or other adults in his life.

He has a need for the feeling of hanging … the doctor figures it is either because he has balance challenges and when hanging he doesn’t have to balance, or because the feeling up pulling deep in his shoulders is satisfying, or both.

So, we got a chin up bar this week. I was really looking forward to using it as a tool for Coram. I get really tired of having a person trying to hang off me all day.

We have had the bar for 5 days.

Today, Coram decided to try to hang upside down (against our house rules regarding the chin up bar).

And of course, he fell.

And of course, he broke his arm.

And bonked his head badly, and bruised his thumb on the other arm.

Poor kid.

We were planning to spend today, Labour Day, at the playground of his school. We had packed a picnic lunch, and we were going to play there all day, to let him get used to the space again.

Instead, we spent four hours at emergency.

Coram still wants to go to the playground. He can’t climb it, but he wants to be there.

So off we are going to blow bubbles at the playground, and maybe kickthe hacky-sack.

Monday, July 24, 2006

Hot Stuff

It’s hard to believe it’s the middle of July.

I mean – it is, and it isn’t.

It isn’t hard to believe in that it is sooooooo hot that none of us are getting any sleep and we fight over who gets to douse themselves with the hose first.

But it IS hard to believe in that I could swear it wasn’t that long ago I was making the final preparations for Christmas presents, and it was even less long ago I was looking at the end of the school year wondering what the summer would be like.

Well here is what the summer is like: it’s half over!

I have been working like a dog (well, actually like a normal person, but for me, it’s working like a dog.) The kids have been in a really cool summer camp that I am thrilled with. Steve keeps on keeping on. The cats are hot and shedding all their hair. We are all suffering from fleas I swear the dog upstairs brought into the house. After all, we have had cats for nine years and never a flea until the dog moved in upstairs. Grr.

I think August will go a bit more slowly, since I am not working full time, so I can enjoy the passing days. I hope to take the kids to Playland at one point. If I feel really ambitious, maybe even the waterslides. I want to have some good fun with them.

I know that September will be here before we know it. And then we all have to get serious again. We need to get into those habits of successful people – you know, nightly homework, early to bed early to rise, packing lunches and all that fun stuff. And though I find fall and the back to school routine exciting and full of promise, it always seems like the summer was over just when we were getting into the swing of it.

So – here’s hoping this year we get into the swing a bit sooner.

Friday, June 09, 2006

This is an excerpt from am email I wrote to my mom. I think it captures where we are at. And I'm so drained I can't imagine re-writing it just for the sake of it being original on the blog.


Coram had a pretty good week. He got to go to Playland with his school on Wednesday. It was all courtesy of CKNW, the radio station. the teachers wanted me on had in case he needed me - so I hung out a Brentwood mall with one of the teacher's cell phones. It was pretty boring for me, but it woudl have been less than five minutes had they needed me. they wanted to give him the change to be successful without me, which is why I didn't just automatically go along. He made it through the whole day with flying colours...they didn't need to call me, and he was on top of the world that night.

But - typical of Coram when his routine is off - he didn't make it to school on Thursday. He stood on that bottom step of his buss and whined but he couldn't get himself to go up. I talked it over with the teachers, and they pointed out that every time he doesn't make it on the bus and I try to bring him in, he ends up having a fit and coming home with me anyway - so I didn't bother. We just hung out and went to the park.

So I guess that's how it goes. Good days, triumphs (like WOW he made it through Playland!) and then not so good days. I think there is a process we have to go through where we come to terms with the lifelong implications of who Coram is. It's better to know what's going on than it was to be mystified...but at least when we were mystified, we could hold on to the hope that there might be some missing piece of a puzzle and then BAMBO he'd be a normal kid. So thats another little death. But he's still an amazing, brave kid. I still maintain that the way the world hits him....so hard...everything is bewildering, smells strongly, is loud, and rubs against his skin.... if it were me, I'd never get out of bed. He's an amazing boy for just getting up and facing the day.

Tuesday, May 30, 2006

Today was day three of Coram’s psycho educational assessment.

I am really hoping to have some answers after this.

I have a big fear right now that they will come back and tell me he does NOT have a learning disorder – and we will be right back where we started.

I think if that happens, I will have to fight with the doctor. I have been sitting in there and watching this boy. I can see that he is doing grade three work on some tasks, and flat out refuses to do other tasks. That’s just not normal.

I will admit that I’m not 100% sure we are looking at non-verbal learning Disorder anymore. Coram has no spatial problems at all. He was doing puzzles at the grade three level. His visual learning is markedly stronger than his verbal learning. Which is almost the opposite of nonverbal learning disorder.

Maybe it’s just the idea of a learning disorder that seems so ‘right’ when I read about nonverbal learning disorder. The idea that Coram is not misbehaving because he has behaviour issues, but because he is being faced with tasks he simply cannot do. Certainly, when we alter our expectations from him, and find ways to accommodate his unique learning styles, he thrives.

My Coram is such a sweet, wonderful guy. He can have creative conversations, and he can be so caring and empathetic. But when he’s stressed, he becomes a monster.

All I want is to create an environment where we can all see his wonderful side, more often.

Tuesday, May 23, 2006

Boring Ol' Me

I feel like I have no personality anymore.

I have nothing to talk about other than my son’s learning disability and the accommodations that need to be made for him. I am a fountain of information about what simple changes need to be made to allow my amazing child to shine. I can chat your ear off about similar stories I have read in books that are similar to mine, and the creative yet amazingly simple ways the parents found to hep their kids.

But what else can I talk about?
Not much.

Friday, April 28, 2006

Moving on.

Coram is now in a new school.

He just couldn’t make it work at the last one.

I think he really was trying. I think I wasn’t fair to him along the way, and that the teachers weren’t either. We all thought we were doing the right thing, but I believe now that we were asking him to do things he simply could not do.

I have to remind myself that six year old boys 9even those who are almost seven) don’t intentionally misbehave. My boy was giving me signals, clear as day, that he could not meet the expectations placed on him. His ever day was filled with frustration, disappointment, and hopelessness.

Imagine going to work, and not being able to successfully complete the task you boss placed in front of you. Your co-workers complete them, and they earn rewards and accolades, but you don’t. You spend your days being reprimanded and punished. You have little to no success on a day-to-day basis. You try your hardest, and then push a little harder, but you cannot achieve what is expected of you.

Wouldn’t you be in a pretty grumpy mood most of the time, too?

Wouldn’t you stop trying, too?

Rewards would start to be laughable, because you would know they were out of your reach.

Life would seem hopeless and frustrating.

And that is the life my little boy has been living.

We have scaled back our expectations, moved Coram to a remedial school, and taken the pressure off.

And my little guy is so very much more at ease in his own skin. He loves to share with me the successes of his day.

I don’t know how much he is learning. I don’t know how he would compare with other kids his age academically.

And I don’t know what his future holds.

But I know that for now, for here, he is happy.

Thursday, March 09, 2006

Hugging Snow

Today I Hugged the Snow.

It doesn’t usually snow much in Vancouver. And it rarely snows in March. But today, it snowed.

Coram was home with me. He broke or sprained his thumb on his writing hand, so was home with me yesterday and today. No sense sending him to school in pain, and with a huge splint stopping him from doing any writing or colouring. That’s just a recipe for disaster. So he stayed with me.

And it snowed.

It was snowing when we left to take Lucas to school, but nothing was sticking to the ground. It snowed more heavily on the drive home. When we came inside, there was a thin layer of snow covering the grass in the front lawn. Coram asked if he could go out and play. I reminded him he has a big owie on his thumb, so he asked if he could just go out and walk around. It sounded fine to me, so we bundled him up in boots and a jacket, and off he went.

I decided to snuggle up in a blanket on the couch and watch him through the window.

He walked out, and stood very still. He looked up at the sky, letting big flakes of snow land on his cheeks. He had a wide, joyous smile on his face.

He spread his arms wide, wider widest…stretched as far as they could go. He took two steps forward, then wrapped his arms tight, tight around himself. He looked up at the sky and puckered his lips and let snowflakes fall on them.

He looked back at the house and saw me watching him. Bright eyed he ran back to me and said through the window, ‘I’m hugging the snow mom! And kissing it! Can you come out with me?’

So I took the camera and got my fleece wrapped around my shoulders, and went out to hug the snow.

Coram and I took pictures of each other hugging the snow as it fell from the sky. He took a picture of our feet, and of the neighbour’s dog’s water bowl.

We got cold, and we came inside. We snuggled under the blankets together and watched a show.

When we left a few hours later to get Lucas from school, it was a beautiful sunny day. The sky was clear and blue. The grass was green. There was no indicator that it had snowed any time recently.

But Coram and I know that it did snow. We had hugged it.

Tuesday, March 07, 2006

Money, Honey.

Recently we started to give the kids an allowance.

I used to be completely opposed to giving kids allowance. I thought it would give them the wrong idea of self-discipline. If they only behave because they will get money, they will never internalize that one behaves just because it’s the right thing to do.

We have a couple of trusted friends who started giving their child allowance. These are intelligent, educated people who share a lot of the same ideals as us. That made me pause and think.

Then I came across a really good chapter in a parenting book about allowance, and I changed my tune.

Each of my boys now gets $5 a week. The stipulations are as follows:

A minimum of 10% must go into long term savings
A minimum of 10% must go into short term savings
A minimum of 10% must go into charity
A minimum of 10% must go into spending money

After they have done that, they can choose where they want to put the remaining money. They can decide to put more in spending money, short term savings, or wherever. Mostly they choose to put it into short term savings.

Short term savings is for thing they want, like new books, YuGiOh cards, game cube games, etc. Long term savings are for retirement or buying a house one day. Spending money is for when they want a pack of gum, or some other treat at the store. Usually these are the things they whine at me to get them on a daily basis.

Now, when we drive past 7-11 and one of them pipes up, ‘ Can you buy me a slurpee??’ I can tell them they can buy it with their own money if they want it. Most of the time they don’t want it that badly. I end up sending far less money on them this way.

Recently, the Scholastic book flyer came home from school. As usual, the boys had long lists of books they actually wanted. I asked them if they wanted to spend their money on them – and to my delight, they did! They both dug deeply into their short term savings (which they had been saying was going to game cube games) and bough themselves a big whack of book! I was all warm and fuzzy inside, that they would make such a choice. And, I didn’t have to spend lots of money or argue with them about which books I was and wasn’t willing to pay for.

Soon, we will be deciding what charity we will donate their saved charity money to. Since they each get $5, they each set aside 50 cents a week for charity, and they decided to wait until it ads up to a decent sum before we donate it. I have started to collect flyer and information – I think they might like to donate to the SPCA since they both love dogs, but I also think they might like the idea of sponsoring a child. I can’t wait to see how they light up at the thought of helping the helpless.

Monday, March 06, 2006

The beauty of song…

I love it when my child sings.

I like it when they do cute little concerts at school. Coram is currently practicing for his school concert which is coming up in April.

‘I am just an ordinary Star…
Nineteen millions miles from where you are…
But I’m hot to the core…
I have helium galore…
I am just an ordinary star!’


His class plays the sun, in case you can’t guess.

I like it when they sing along to songs in the car. I listen to rock music, which Coram loves and Lucas hates. Lucas wasn’t me to listen to hip hop. Gag.

Coram sings: ‘I hate everything about you, why do I waaawaaaaa…

But what I really love, is when one or both of them are playing quietly, and they just start to sing spontaneously.

Lucas is building with Lego. He has his door closed, because he is working really hard on it and doesn’t want to be interrupted.

And he’s humming the tune to ‘Moulin Rouge’

(Which, BTW I have no idea where he heard LOL)

It’s just such a true sign of contentment, to me, when a child is occupied and just starts singing.

His tune starts to wonder…it’s no longer recognizable. Now he’s inserting words about what he’s doing…what he’s building, what character will live in the house he’s creating. He’s keeping himself company with this birght, cheery little song.

Sigh.

Thursday, February 09, 2006

Not a good day.

I am so sad.

I just don’t know how to help Coram.

He has had eight good days in a row at school – and at home. His behaviour has been sweet and positive, and excited.

He’s been singing the song his class will perform at the school play next month, and counting on a really big field trip that’s coming up Monday.

He’s earned his Friday privileges, his daily stickers from school, and his piece of his computer puzzle at home.

But today at school, out of the blue, he refused to copy the words from the black board onto his paper. This lead to throwing his paper, tipping his desk, rolling around on the floor, running from one end of his classroom to the other, and taking running kicks at the family worker who was with him.

They are ready to boot him out of his program.

His teacher said to him, ‘ Coram it looks like you don’t want to go to this school anymore.’ And he sobbed and sobbed that he does want to go there. This is the first time he has heard that his behaviour might cause him to be moved to another school, and I think that might motivate him. He loves it there.

And yet, I think it might be too late. There was a supervisor there when he was tantruming, and I think the wheels are already in motion for him to be moved. He doesn’t’ seem to get the chance to change his behaviour now that he knows what’s at stake.

And they don’t want to take him on the field trip. Not to punish him, but because they don’t know if they can keep him safe in that environment, should he tantrum.

So…eight good days, and one horrible, violent day undoes all the good work.

Is Coram ever going to understand that everyone can have a relatively bad day and get another chance, so long as they contain the bad mood? I know that he left the house unhappy this morning because we were out of the bread he has in his lunch every day. But where another child might be grumpy about it, Coram simply cannot cope with life for the rest of the day, and his unhappiness builds up until he is ready to throw things and kick someone.

And after one bad day, he has to face all that he has lost. He will be heartbroken to miss the filed trip. He will be even more heartbroken to leave the school, his new friends, and the upcoming spring play.
I am heartbroken for him

Monday, February 06, 2006

Ruminating...

Today I put my plans on hold to take my 7 year old to emergency.

Why?

Well, he twisted his foot, and since the same foot has recently been broken and he was in extreme pain, I decided it was worth having a look at.

How did he twist his foot?

Walking. Sort of.

See, this boy isn’t capable of walking. Every step he takes has a skip or a hop to it. He can’t just move, he has to move in the most energetic way possible. And that makes him more accident-prone.

Such is the life of my ADHD child.

If only I were a farmer and could open the door and let him out to run in the fields, herd cattle and train the sheepdog. That is the kind of life his energy level needs.

That is the kind of life humanity lived for thousands upon thousands of years.

We were created to hunt, to forage, to fight for survival. We were given energy to protect and care for ourselves, and the people around us.

Now, we are expected to sit still, focus, read, print, type, listen, concentrate, and so much more. Oh, and if we are lucky, the schools will work in a half an hour of exercise three times a week.

Is it really any wonder that we have so many kids with this ‘disorder’ we call ADHD?

And is it, really, a disorder? Or is it perfectly normal, and our society has the disorder?

And, if that is true – how is a parent supposed to handle it?

I mean, if in my heart of hearts I know there isn’t anything really wrong with my son, and that in fact he is blessed with a good dose of energy to take care of himself and his family… then why would I allow him to be labelled with a disorder and medicated for it?

Ad yet, in my heart of hearts I also know that he doesn’t fit in. He can’t focus, can’t sit still, can’t be successful in the society that he exists in. I may wish we didn’t live in this modern, sedentary world, but the fact is that we do. If medicating makes him able to meet the expectations set upon him, and not medicating him essentially sets him up for failure and disappointment, how can I not allow him to be medicated?

I would like to think that I can change the world. That I can forge new understanding, change the education system. Find ways for individuals who still have the energy required to farm and forage to get different education that uses that energy, to be successful given the tools they have.

But I can’t. And who am I really helping if I deny my son the means to be successful in the system he is in?

I am so confused.