Strattera Journal: Day 1

We finally decided to take the plunge and give Jacques medication.

It was painfully obvious that we could not continue down the road we were going. Jacques outbursts seemed to only be increasing, and his anxiety escalating.  The strategies we were using help calm things down worked fairly well, but Jacques seemed to be a constant bundle of nerves, teetering on the edge at every moment and never being able to pull himself back before falling over.  I was drained just thinking about how that must feel.  Our recent psych-ed assessment indicated that Jacques also has ADD, and the psychologist patiently explained that some of Jacques anxiety was due to the fact that he was not “getting” all the information he needed, and therefore panicking and blowing up.  She felt that if we treated the ADD, it would also have a positive effect on Jacques anxiety.  I was never one to ignore a 2-4-1 deal…

I talked with Jacques and explained to him, as best I could, in terms he could understand, what the medicine was for.  He thought it might be a good idea to try it, but told me he didn’t want a needle. I expained that just because my MS medication came in a needle, it didn’t mean that his would too.  I explained that it was a pill he would take once a day, and he seemed ok with that.

So this morning I gave Jacques the pill.  It was really hard for him to swallow.  I’m not all that surprised as his oral motor skills are rather poor and even help define what he likes to eat (namely easy-to-chew foods).  After worring that it might be impossible for him to handle, he finally managed to swallow it.  But there were tears, and lots of them.  It was hard to be strong and keep encouraging him the way he needs, when all I wanted to do was cry too and flush the whole lot down the toilet.

The morning started off pretty normally, but then Jacques became quite weepy and upset over every little thing.  I wish I knew if it was related to the medication or not.  Last night, the boys stayed up wayyyyy past their bedtime and were up like usual, bright and early, this morning.  On a positive note, he was relatively easy to calm down, considering how upset he had gotten on each occasion (and the blowups were easily the worst he’s had in many months).  It was a bad morning in my books and it didn’t take much to convince him to take a nap in the afternoon.

The rest of the day was pretty much normal – so I chalked up the bad morning to being over-tired.  I guess we’ll see what the rest of the week brings and if it gets any easier for Jacques to swallow the pill.   I guess I am still worried if we can make any meds work but my biggest fear in all of this, is that we loose Jacques.  That instead of getting a happier more relaxed Jacques, we get some other creature who looks and sounds like Jacques, but just isn’t.

Little Grey Donkey

Sometimes I think I’ve finally figured Jacques out.  I can anticipate his every anxiety, annoyance and what he will want – or not want – to do.  And then he does something that makes me feel like I will never be able to figure it out.

A few months ago, Jacques decided to volunteer for our Church’s Christmas pageant.  That, in and of itself, was a shock.  Jacques who doesn’t like crowds, loud noises, has sensory issues, or genereally talking to people, was going to stand in front of a group of people, sing songs and wear a costume.  He quickly refused a speaking part, but came week after week to practice without any fuss and sang songs and did his very best.  The coordinator, Mary, was a very sensitive soul and assigned Jacques the role of Donkey, the only role where he wouldn’t have to stand for the whole performance.  Jacques low muscle tone (due to 48 XXYY) would have made that impossible.

The night of the performance, the expected anxiety attack occured.  Jacques didn’t want to put on his costume – the back room was filled with excited and yelling children. He was crying and adamant that he would not be performing.  My heart broke for him.  I knew he had worked so hard to learn all his songs, and that his anxiety was holding him back again.  With the help of my friend Andrea (she had at one point also been Jacques aide at school), we got Jacques in his costume and I took him to the front of the church.  I have learned that even though Jacques doesn’t like large groups of people, he can handle a room filling up much better than entering a room already filled.  So I sat with my donkey and we watched the pews fill until the performance was ready to start.

Jacques didn’t do much singing – but he did steal the show.  A young boy was a cow, and Jacques decided to pull on his horn for the first part of the show.  Watching the other parents hold back their giggles allowed me to relax somewhat.  And then he had his big part where he went up and down the aisle while the kids sang “Little Grey Donkey”.  After that the baby Jesus was in the manger – a real baby – which I had not known would happen.  Jacques spent the whole rest of the performance wagging his tail in her face, playing peek-a-boo and making her giggle.  I spent it worried that the manger, which wasn’t really designed for anything other than looks, would collapse under the weight of Jacques who was leaning on it.

After it was all over, Jacques was all smiles.  He was very happy and ready to eat some cake, and I was very proud.

New School Journal: Jacques weighs in

The other day Jacques asked me to write in his journal.  Jacques’ journal is usually used for when we go away on vacation.  Its better than taking homework from school: he works on his handwriting and his language skills, and he ends up with a nice memory of whatever trip we have taken.  I was a little surprised he asked to write in the journal, but I was not going to discourage him.

Turns out he wanted to write about school, which was a little bit of a shock, considering he won’t even talk about it.  Even better was the fact that it seems Jacques had something happy to write about:

8

Sometimes a number is just a number.

When I was little, I was convinced of the magic of numbers. I just knew they could reveal the future. When I was old enough to find books on numerology at the public library, I spent hours sneaking them out and hiding them (I was convinced that my very Catholic mother would not approve).  I would read them with a flashlight at night after I supposed to be in bed,  but I just couldn’t solve the mystery.  In school, I was fascinated by imaginary numbers and fractals, convinced that this was indeed the way to decode the world.

Now I realize that numbers only have meaning when you attach one to them.  This past week, Jacques turned 8.  And this year, more than any, the marking of a birthday seemed to be a big deal. Maybe its because the number 8 seems to come up a lot: I used to live on #8, I was married 8/8/98.  Or maybe 8 is just a number, but it made me think a lot about Jacques hard entry into this world (5 days in NICU, and countless doctors since then), all his struggles as a little one, and just how much he has grown and changed in the last year.

Jacques has made incredible progress on his speech.  He really works at it and wants to get it right and is so much more talkative than he used to be.  People notice.  He started at a new school and has seemed to manage the change much better than I expected. He is learning to type and send emails.   He is learning to conquer his fears, and push himself to try things.  I would say that is his biggest accomplishment.  He’s also learned to trust me more – when I tell him I know he can do it, he is starting to believe me and when he tells me he can’t do something – I listen with my heart and try not to push him to quickly into things I know will take time.

He still cannot ride a bike, but he pedals his Green Machine like a fiend, and thanks to a buddy bike, I think we’ll be able to figure out how to teach him to balance.  He is working harder at learnign to swim, even though he is terrified, and hates putting his face in the water.  He still cannot make certain sounds, but he is working harder than ever at his speech therapy appointments.

For the first time in a long time, I am able to think of how much better things are, instead of focusing on all the things we have to still work on.  I am better able to savour the accomplishments, and not just worry about what the future holds.  This year there were 8 candles on a cake, and that meant we had a great day.  Next year will come soon enough.

DogCora

A boy and his dog.  Supposedly a wonderful thing.

We just adopted a new dog after almost 3 years of not having one.  Jacques was not happy about that idea, which was not that surprising to me.  When we had the funeral for Pete, it went something like this:

Me: “Ok, so we’re all going to say something we liked about Pete.  Pete was my first dog, and I liked walking him and how he would howl and sing with me.  He was my friend.”

Oscar: “I liked how Pete would lick Jacques in the face, and Jacques would get mad.”

Jacques: “I liked it when Pete was outside.  He smelled.”

He vetoed a very cute basset hound the first time we took him to the animal shelter, and mostly my heart broke because not only did I REALLY want another dog, Jacques was so unhappy about getting one, I just thought there was no way I could bring one home.  But Matt had other ideas.  He thought I should have a dog if it made me happy, as life was just too short (which is a huge departure as he previously stated there would be no other dogs after Pete). So Matt had a talk with Jacques and Jacques agreed it would be ok to get a dog.  For me there was also a hidden benefit.  Some people think that having a dog helps reduce the likelihood of childhood allergies, and boys with 48 XXYY are very prone to allergies.  I hope that having a dog will be beneficial to Jacques, not only socially, but from a health perspective (so far we have been lucky and he doesn’t have any known allergies).

So two months after the basset hound, we adopted DogCora (a pun on Cat Cora, from Iron Chef America, one of Jacques favorite shows).  Jacques had a hard time at first.  DogCora was rather unruly, having been a stray and probably not an indoor dog.  She needed time to learn how to behave in the house.  But Jacques started to warm up to her.  She doesn’t smell as much as Pete did, and she doesn’t shed much (she’s a wire haired pointing griffon).  He will occasionally walk her, and is very pround of himself when he does. He likes to pet her when she’s on the leash (as that way she doesn’t jump all over him).   I’m hoping to help him work on teaching her some new tricks, and building up their relationship that way, but for now I am happy where things stand.

DogCora

New School Journal – Month 2: The honeymoon is over

So far it has been a rough couple of  months.

At first, Jacques was pretty much having nightmares every weeknight, with only weekends being restful.  The other day he was mumbling something about math.   He still has nightmares at least twice during the week.

When asked, he tells me that he has had a good day at school.  He is usally excited at the end of the day and tells me all about what he has learned.  As usual, gtting him to talk about who he has played with is like pulling teeth.  And there has been two phone calls.

The first was to inform me that Jacques and his brother had been licking pine cones at recess at some older children’s instigation.  Jacques seems to be going through a licking phase.  I think he is trying to amuse the folks around him.  He loves jokes, be he just doesn’t seem to be able to differentiate between when kids are laughing with him and laughing at him.  The second call was a more convoluted story.  There had been two incidents on that day.  The first was that Jacques scared a little girl.  Jacques has been playing on and off with some of the grade 1 students, because that’s what grade his brother is in.  In this case, he forgot to use what I like to call play protocol (ask someone to play before starting to play), and just started yelling and chasing this little girl.  Well, Jacques being tall for his age (as is normal with a 48 XXYY diagnosis), apparantly scared the little girl who ended up crying hysterically and screaming for a teacher.  Jacques was just trying to play tag with her, but she thought he was going to catch her and hurt her.  The second incident is more complicated, Jacques was playing by himself, pretending to be caterpiller eating (he and I are reading a book all about insects).  Some kids thought that he really was eating grass, and started yelling at him, so he pretended to spit the grass out, and ended spitting on a kid.  Who then soaked Jacques with a water bottle. 

The school was wonderful.  I am so impressed on how they called me to inform me of these situations, and how they planned on helping Jacques out, not just to inform me on how the other children were disciplined.  I’m pretty sure this type of thing was going on at the other school, but I never heard anything.

The schoolwork is starting to get out of his abilities now too.  He had a project that was well beyond his capabilities.  One look at the sheet would send him into fits of crying before we even discussed anything.  After a week of me helping him out, I finally wrote a letter to his teacher explaining that I felt the assignment was inappropriate and that I wasn’t sure what I was permitted to modify or not.  Again, a much better response than the previous school.  I received a phone call from the teacher that very evening and we talked until I felt that she understood my issues and that we were on the same page.  But for Jacques it might already be late, his anxiety is through the roof.

The Friday of Thanksgiving weekend, he came out of the school in tears and wouldn’t tell me why.  After some gentle prodding the next day, he told me “All the kids think I am too slow”.  According to him “I’m ok  in Math, but not in Language”.  Not a big surprise since most guys with 48 XXYY Syndrome have language learning disabilities, including Jacques.  I asked him if the problems were his brain was slow, or his hand was slow writing  (I have been working on teaching him to type and he had been resisting me somewhat).  He admitted both and agreed with me that if he learned to type, he might be fast enough not to have to worry about his brain being a little slow.  When asked, he also thought that he didn’t think the kids were laughing at him, but they were just noticing.  He was rather weepy all weekend, even though I gave him time off from all his homework and various exercises from therapists.  He even wet himself that week one night, which hadn’t happened since he was potty trained.   My mom asked him if he had any friends yet, and he replied that he hadn’t been at the school long enough.  And while all of this self awareness makes me happy and proud on one hand, the sadness in his eyes when he tells me these things, breaks my heart.

Talking with Jacques – age 7

Jacques speech has made considerable progress in the last year of speech therapy. 

Interestingly, one of the big reasons that he has made significant  progress, is that we changed the time he gets his appointment.  I figured out early on that more than 45 minutes was too long for Jacques and more than every second week made Jacques “over-therapied”  (a term I use to describe when he refuses to do anything during an appointment, even complaining before going).  But it took some time to see that  Jacques was way too tired after school to work on his speech.  Most of the appointments would be spent negotiating and crying that he couldn’t do it.  With the switch to the morning, Jacques was truly at his best, perky and happy and even mischievous. 

We spent at least four months working on ”th” without much progress.  For Jacques and the rest of us, it was quite frustrating.  Jacques doesn’t shift gears easily so he took some convincing, but agreed to do sounds on rotation, and that’s how we introduced “ch and “sh”.  I don’t think he’s figured out that we have not gone back to “th”.

He can now do “sh” and “ch” when he concentrates, in the beginning, middle and end of the word.  The sounds still don’t come spontaneously – and I often feign ignorance -  “I’ve never seen people put soos on their feet?!?”.  It’s amazing that he doesn’t get upset with this technique and will even humour me by repeating the word properly.  Sometime words sound choppy, each syllable enunciated separately in an effort to make the difficult sound.  He has also been working on his ‘J’.  Jacques would do a great French J – all soft, like in Jacques, but couldn’t manage the hard ‘J’  like jam, where there is more of a ‘d’ sound in front.

Here’s some videos of Jacques:

In this one he says “Mississippi River”, and then tells me its hard because “it is too many words and I can’t say it fastly”.  As you can see language is still an issue.

Here Jacques is demonstrates his “sh”:

 Here you can see Jacques incorrectly bite his lip when doing an “m” for math, and jumble up syllables in longer words:

Here you can see how much Jacques struggles to move his mouth and lips (and makes funny faces) when talking:

Sometimes its just amazing to think of how far he’s come.  I’m glad I am keeping track.

New School Journal – Day 1

Well, we survived day one.

No phone call, one freak out, and only minimal tears.  The morning started out well enough, as it was Oscar’s brithday and Jacques was excited to give him his gift.

Jacques’ anxiety level ran pretty high.  He’d waken up with nightmares several times throughout the night, and was a little tired in the morning.  He remember our conversation about not eating too much for breakfast (he was worried about throwing up), and had about 1/4 of the cereal he usually eats. He got dressed ok, but skipped making his bead.  The tears came when I reminded him that he needed to do that before school.  Jacques was worried about being late.

That’s probably my fault.  At the previous school, the boys took the bus, and somehow they just couldn’t get it together and it felt like we were going to miss the bus every day.  The new school starts a little later, but we’ve kept the same wake-up time, and we seem to have a more relaxed morning.

When we got to the school, things were a bit different from what I expected.  All the parents were going into the school and walking the kids to class (as opposed to dropping them off in the yard to play).  Jacques was a little confused by this.  All of a sudden as he laid foot on school grounds he exclaimed “I don’t want to see new people”.  I told him I would walk him to class and he would be ok.  Fortunately he could see his teacher from the front of the school, and he focused on her, barely even acknowledging me as I dropped him off.  It was very good that he got to go to the school last week and meet her, as well as see his classroom.

After school, Jacques was excited to tell me a kid he knew from Judo went to that school too, and that he and Oscar played together at recess.  I asked him to tell me what was good about his day and what was bad.  He told me he only had good things, no bad ones.

I’ll take it.

New School Journal – Day -1

School starts tomorrow.

To say that I am anxious, would be putting it mildly.  I have to hide these feelings, because I don’t want Jacques to pick up on them.  I know I have done all I can to ease the transition.  We’ve walked to the school and back several times  (this will be the first time the kids don’t take a bus), and we’ve visited the school this past week.  The staff there is very nice nice and we spent a whole hour looking around and trying to make the kids comfortable. We picked a designated place for meeting before walking home.  Co-incindentally the first day is also Oscar’s birthday – so we have quite the weird vibe going on.

So far Jacques hasn’t shown much anxiety.  As a matter of fact its only this weekend, that he’s even mentioned anything.  On Friday he told me “I hate school” – which isn’t true.  We talked about it and I figured that he is worried about making friends.  We talked about recess and how he can introduce himself, and that we will pack some small toys he can share and play with.  He’s mentioned it again, but perked up quickly when I reminded him that with Oscar in grade 1 he would now be able to play with his brother at recess until he became more comfortable with the other kids.  Somehow it hadn’t registered that Oscar would be available.

This morning he reminded me about last year.  Sorry little buddy – but I couldn’t remember at all what happened last year on the first day.  Jacques reminded me he threw up.  He’d worked himself into quite the frenzy of anxiety last year on the first day – and I’d had to go pick him up and take him home (there was only 1 hour left on the day and it seemed silly to make him go back to class).  I had totally forgotten about that.  So we decided he’ll only eat a small breakfast, and that if he’s feeling a little under the weather he should ask to go to the office to relax (note to self – write a note to the teacher about that).  Hopefully last year’s incident will be avoided.

I am very proud of how Jacques been handling this change.  he comes to tell me how he feels – which for him is huge.  We sit and talk about it, and when I ask him if he feels better after talking, he affirms that he does.  I remind him that there is no problem we cannot solve together – even if sometimes it takes more than one attempt.  He seems to be listening.  I have no idea if he believes me or not.  Sometimes I wish Jacques made better eye contact.

Today we are going to have a lazy day, and Jacques will just have some fun and we won’t worry about school until bed time.  So far things seem to be really low key – which is how I like it, and how Jacques handles it best.  The only problem seems to be all the adults who are so excited about back to school.  I keep having to remind them that its no big deal and that we don’t need to talk about it that much.  Fortunately, Oscar’s birthday makes changing the topic very easy.

The Art of Mind Reading

When I was young, I used to think I was clairvoyant.

Now that I know better, I realize that I have learned to interpret peoples facial expressions and word selection and understand how people think.  Sometimes I am wrong, but not often. And some people’s patterns are so predictable I can even anticipate what they will say or how they will react in various situations.

With Jacques – its all a toss-up.  Sometimes he is very predictable, and other times I don’t understand at all.

Today Jacques didn’t want to go to his day camp.  He’d been going every day and having fun (according to him), all week, but today, on the last day, he wanted to stay home and sleep.  Sleep is Jacques favorite thing to want to do when he can’t cope with something.  I asked him why several times throughout the morning, and he wouldn’t answer the question, he just keep saying he wanted to stay home and sleep.  Matt asked him this afternoon, and he gave us some weird story about the bathrooms being too crowded.  And he had the weirdest facial expression.  It made me think that it was at least, partly a truth.

I guess I will never know.  At least Jacques is conclusive proof that I cannot read minds.  Or maybe his extra genes prevents me from doing so…