Tag Archives: books

Reunited

Today I went to see an old friend
Years had passed and I wasn’t sure
Why I’d taken so long to visit

Familiar scent filled my nostrils
Hushed voices in quiet corners
Everyone is welcome here

Walking down the rows of pages
I lost myself as I used to do
In the hope of every tale not yet read

Judging them by their covers —
And by prose from random pages —
I found myself again

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RULES by Cynthia Lord

What a wonderful book.  I wish this could be on the required reading list for 5th, 6th or 7th graders everywhere (it might already be at some schools – I have no idea!). 

…I keep re-writing this review…my words aren’t doing it justice…

This book tells the story of approximately a month in a 12-year old girl’s life.  She’s a pretty typical 12 year old girl, only she has an autistic 8 year old brother.  She feels her family’s world revolves around him and she alternates between trying to protect him and wanting to get as far away from him as she can.  She writes “rules” for him in the back of her sketch pad.

“That’s where I keep all the rules I’m teaching David so if my ‘someday-he’ll-wake-up-a-regular-brother’ wish doesn’t ever come true, at least he’ll know how the world works…”

The author helps Catherine put words to her emotions through a new friend – Jason, a paraplegic the girl meets at her brother’s occupational therapy sessions.  Jason can’t talk and relies on his communication book – he taps at the words in his book to form sentences.  They meet when Catherine is busted trying to sketch him and he gets upset.  As they get to know each other, Catherine starts making illustrated words for his book so that they can talk to each other.  She begins using this as an outlet to share her feelings regarding life with her brother. 

Again… words escape me.  This book had me in tears last night. 

After an encounter with her brother and the neighborhood bully – in front of her new “popular” friend, no less – Catherine runs to her room and writes down many new words for Jason. “Murky” was the one that required the most explanation.  She explained that there’s a pond she and her friends like to visit, and the bottom is covered in mud, old leaves and pine needles.  She and her friends often dare each other to dive down to the bottom and bring back a handful of this murky mud and leaves as proof that they made it.  When she dives down, she says her foot sinks into the murky stuff at the bottom – up to her ankle – and just when she feels she’s almost out of breath and afraid the murkiness might not let her go this time, she rushes to the top and feels the exhilaration of fresh air.  She explains to Jason that sometimes with her brother, she feels like she won’t make it back up – she’ll be sucked down instead.

Jason responds by confessing that he sometimes wishes he was dead, which upsets her. He explains that he feels incomplete.  He dreams of running and asks her what that’s like.  After trying to explain it, she decides to take him for a run instead.  His mother is wary, but allows it.  She takes him outside in his wheelchair and runs as fast as she can, until she hits that runner’s high feeling.  Even bound to his chair, he feels it, too.

The author does a wonderful job of juxtaposition with Jason vs. Catherine’s brother David.  One has physical abilities, the other has mental ability.  Catherine battles with what matters more – her own feelings or the opinions of others.  In the end, she decides that her friendship with Jason and her love for her brother take precedence over what others might think or say.

I saw many similarities between Colin and the character David.  At this point, Ryan and Robbie don’t seem to ever be embarrassed by Colin, which is good.  I worry that won’t always be the case.  I hope we can raise them to understand that friendship and love are more important than what small-minded people think and say. 

One of the “Rules” Catherine made for David struck a chord with me:

Sometimes people laugh when they like you. But sometimes they laugh to hurt you.

I read this out loud to Rick.  He agreed that’s something we both worry about Colin facing as he gets older.  We have zero tolerance for bullying in our house – from anyone – but what can you do to protect your kids outside the home? 

Colin and Ryan are in the same grade.  I hate to put something so heavy on a 7 year old’s shoulders, but I hope Ryan will always try to protect his brother.  I know it won’t always be easy.  I hope we can raise Robbie and Ryan to understand that it’s never okay to make fun of someone for being different – that standing up for the people you love is more important than following the crowd.

Otto Learns About His Medicine

Last night, I read Otto Learns About His Medicine to Robbie and Ryan. 

Colin was sitting on the floor nearby, putting a puzzle together.  He rarely sits with us when we read together, unless I’m reading Where the Sidewalk Ends (that one is my favorite, too).

Ryan and Robbie are always very excited when a new book turns up.  And this one’s bright red, so it was hard to miss that Mom was holding something new when they finished with their showers.

Before I started, I said, “While we’re reading this book, I want you to think about whether or not this story reminds you of someone you know, okay?  When I’m done, we can ask questions about everything and talk for a bit.”

The story tells of a little car named Otto (whose last name is “Mobile”).  Otto’s engine runs too fast.  He gets distracted by every little noise in the classroom. He speaks out of turn too much in class. He can’t hold still and sometimes runs into other cars without meaning to.  At one point, he ran off from a gas station while still getting filled up because he saw a friend with new racing stripes – gas wound up going everywhere. 

Otto’s teacher suggests to Otto’s parents that they take him to see a “mechanic” for a check up.  The mechanic decides he should go to another mechanic for more help.  They explain that the different mechanics, family members and teachers are part of the “pit crew” that is there to help Otto.  The new mechanic (specialist) suggests that another helpful member of the pit crew might be medicine.  He explains that medicine can’t make you learn or focus or behave.  It is there to help Otto – just as the rest of his pit crew is also there to help him.  They even discuss that sometimes medicine can have side effects and that this special medicine may make it hard to sleep and make Otto not as hungry. [I was a little surprised at the mention of side effects! But I feel they did a good job explaining what they meant.]

When the book was over, I asked the boys if the story reminded them of anyone.  I had a feeling I knew how this might go.

Robbie said, “That sounds kinda like me!  Like when I get distracted at school!”

I was worried he would relate to the book.

I said, “You’re able to sit down and focus when you want to, though, right?” He admitted he could.  “Does this book make you think of anyone else?”

Ryan quietly said, “It’s like Colin, right Mom?”

I told him he was exactly right – the little car Otto was a lot like Colin.

When I said that, Colin perked up – suddenly he wanted to know what was going on.

“This book is about a car that’s just like you, Colin!” Robbie was so excited. “It’s motor runs too fast, just like yours does sometimes! And he takes medicine like you do to help!”

Rick chimed in, “What part of your body is like a motor?  Can you think of a body part that’s similar to a motor in a car?”

The boys thought for a moment, but couldn’t come up with anything.

“How about the brain?” Rick asked.  They all agreed – a brain is like a motor!

Rick explained that sometimes Colin’s brain runs too fast and it makes things very difficult for him.  His brain tells his body to do and say things even when he knows he shouldn’t.  We explained that we’re trying a new medicine that can help.

“Can medicine make Colin behave?” I asked.

“Noooo!” answered the boys.  “It just helps him so he can try to make good choices!”  (I was really glad the book explained this aspect of medicine. Before, Robbie kept thinking that the different doctors and medicine were going to somehow be a cure-all for Colin – I think he’s been disappointed that we kept saying we were trying different things and yet Colin was still…well.. Colin.)

“Remember that part in the book where Otto couldn’t sit still?” I asked.  “Remember how he ran into the other cars and they got mad?  What did they do?”

“They pushed him back!” said Robbie.

“Is that what they should have done?” I asked.

“Nooo!  He didn’t mean to run into them – it was an accident. He couldn’t help it because his engine was running too fast!” Robbie answered.

“That’s right.  And sometimes Colin does things he can’t help, too. We need to remember that.”  I hugged my boys.  I think this book has helped some things about ADHD click for them.

Meanwhile, Colin had the book in his hands and was looking through the pictures.  “I want to read it now. Can you read it, Dad?”  It was already after 8pm – bedtime, for sure.  Rick promised Colin he’d sit down with him tomorrow and read it with him.

I’m thankful for this book.  It’s a bit wordy, but not too bad.  The only thing I’d change are the illustrations.  The cars stand up on their back wheels and start to look a little creepy during the “mechanic” sections.  I think the car metaphor worked well because our boys are big fans of the Cars movies and understand what a pit crew is. 

—-

Colin is definitely having issues sleeping.  Last night, he was still up at 9:30pm and I couldn’t keep my own eyes open any longer.  I was reading in bed and kept nodding off.  I finally called it quits around 10pm and shut off the light.

At around 1:30am, Chloe started pacing.  When she does that, it usually means she really has to use the bathroom. If you don’t get up, you’ll find a present in the house later.  I decided I’d take the dogs out.

When I walked into the living room, I saw Colin was asleep on the couch.  I’d bet he came out there as soon as he thought I was asleep.  I woke him up and sent him back to his room.  My guess is he’s sleeping on the couch more than I care to admit – that’s probably how he’s waking up within seconds of me in the morning. 

Thankfully, once he was in bed, he crashed pretty hard.  He was the last one up this morning at around 6:10am. 

The 20mg twice/day of Adderall has done wonders for him at school – two green days so far this week!  But it’s making sleep very difficult.  I feel bad for him.  Not sure what we can do to help.  I’m going to call the doc today and see what he thinks.  We have an appointment on Friday, too, but maybe he can suggest something in the meanwhile.

Adderall Auction

[No, no, I’m not actually auctioning off Adderall…hold your horses!]

I almost feel like this is an auction.  5mg! Do I hear 5mg?!  Okay, 10mg, 10mg? 10! Can I get 15mg, 15mg, anyone? You! 20mg – do I hear 20mg? SOLD! 20mg!

We went up to 20mg, twice/day, over the weekend and saw such an improvement!  Midday report from school also came back saying he was having a wonderful day today.

Yesterday, Colin did something I haven’t seen him do in months.  He sat down and completed a puzzle.  This used to be his favorite thing to do – he can knock out a puzzle faster than just about anyone I’ve ever met.  And then a few months ago, he stopped enjoying it as much.  When he would sit down with a puzzle, he’d get frustrated or distracted when he was part of the way through and give up.  Yesterday, he picked one of our more difficult puzzles – a map of the world – sat down and knocked it out.  He was so focused!  He even sat down and read a book at one point this weekend – without any instruction or guidance to do so.  He wanted to. 

I was worried that the meltdowns would return in the evenings when the meds wore off, but so far so good. What little anger/upset he’s had, he seems to be able to control fairly well.  I’m still worried about his sleeping.  I wish sometimes that we could rig a camera in the living room with motion detection.  I could have sworn I heard him up around 3am this morning, but the dogs didn’t budge or notice at all, so I figured I was dreaming.  He can be pretty sneaky when he wants to be.  He was up entirely too early over the weekend, too.  6-7 hours of sleep is not enough for a 7 year old.  (It’s not enough sleep for Mom and Dad, either!)

I ordered some books this past weekend – I’m hoping they may help us explain things better to Ryan and Robbie.  I’ll do a full review once we’ve tried them out, but here’s what I picked out.

Otto Learns About His Medicine by Matthew Galvin – A story about medication for children with ADHD.  In this book, Otto is a little car whose engine runs too fast and no matter how hard he tries, he just can’t stay on track and keeps getting in trouble at home and in school. Otto finds a special mechanic that helps him by giving him medicine for his engine.

Why Does Izzy Cover Her Ears? by Jennifer Veenandall – This is a story about a little girl named Izzy who is often misunderstood as she attempts to deal with sensory overload.

I found a few others that I want to try, but thought I’d start with these two.  I’ve tried in my own words – Rick has, too – to explain what Colin goes through to our other boys.  Best we’ve come up with is that you shouldn’t judge people – or make fun of them – for being different…and you need to have patience and be kind. We’ve explained that Colin can’t always control himself and that he says things he doesn’t always mean.  I’ve tried using the word “autistic” a time or two, but those conversations never seemed to go smoothly. We want them to understand him so that they can learn how to have their own relationships with their brother.  I read through probably two dozen book descriptions trying to find ones that matched our boy.  A lot of the Autism acceptance books out there deal with the non-verbal side of the spectrum, it seems.

I also bought a book for myself.  I’m hoping the boys will enjoy it in a few years – I’m not sure they’re ready for it yet.  I couldn’t pass it up.  They might be ready sooner than I think.  The boy in this book sounds a lot like Colin.

Rules by Cynthia Lord – “Twelve-year-old Catherine just wants a normal life. Which is near impossible when you have a brother with autism and a family that revolves around his disability. She’s spent years trying to teach David the rules from “a peach is not a funny-looking apple” to “keep your pants on in public”—in order to head off David’s embarrassing behaviors.
But the summer Catherine meets Jason, a surprising, new sort-of friend, and Kristi, the next-door friend she’s always wished for, it’s her own shocking behavior that turns everything upside down and forces her to ask: What is normal?”

 

Do you have books that you’ve used to help others – your other children, classmates in your child’s school, family members, etc – understand your child’s disability?  What words do you use to make sense of it to siblings?