Hulk Smash

May 7, 2013 3 Comments

Food Coloring Monster

When people feel sorry for me and Atticus over the fact that he can’t walk, I always scoff at them and make inappropriate jokes about how awesome it is to have a kid that stays where we put him. It’s my dark humor helping me cope once again, while recognizing that it is actually kind of great to not have to babyproof and worry about messes and deal with injuries caused by playing too hard.

Those days are officially behind us.

We’ve now had an ER trip for one head bonk and had to cope with another one when he fell off the stair he was playing on, the other day I walked in to find him throwing all his bath toys in the toilet, and now he has gotten into Bear’s baking cabinet, found the giant bottle of green food coloring, and decorated his whole self with it.

And of course, OF COURSE, this sudden burst of precociousness would occur while I am parenting him on my own. Of course he would save up all his mischievousness and mobility for the moment it would drive me the absolute craziest. He’s a wily little sucker.

So on the food coloring day, I did my best not to eat my young, remembered my sense of humor and stopped to take pictures, and then calmly tossed him in the bathtub. The second his toes touched the water a cloud of green rose around him, so I took out his favorite foam letter bath toys so they wouldn’t get stained, throwing them in the toy basket we keep next to the tub. I scrubbed his face and I scrubbed his hands and left him to soak while I saw to the kitchen and my newly verdant tile.

By the time I came back to check on him, my little monster was doing a handstand with his naked booty in the air, balancing his legs on the tub while holding his whole body up with one arm while he used the other to reach for his bath toys and bring them into the water one by one.

Part of me wanted to shake him, and part of me wanted to collapse in awe at the physical feat he was performing.

That’s what I try to remind myself whenever his precociousness makes me bonkers. When he talks back in ways so clever I can’t help but laugh, when he finds brilliant little ways to problem solve around my discipline, when he manages to use his body in ways his therapists and I would never have believed possible to get into something he knows he shouldn’t, I swallow that impulse to scream, I take a deep breath, and I tell myself that this is what is going to get him the life he wants. He might have cerebral palsy, but it doesn’t have him.

If he can make it to adulthood without me killing him, he’s going to be able to do whatever he wants.

Filed Under: 'dis Ability, Are you kidding me?, Atticus, mama musings, The Good Life

Kid’s songs: Bringing Home a Baby Bumblebee

April 19, 2013 3 Comments

Trying to get Atti to cooperate during speech therapy is a herculean task. This kid has an iron will, which is awesome because it means that when he wants something, he cannot be stopped. But it sucks because often what he wants is to not do what his mom or teachers are asking him to do.

So I had to come up with a way to get him to work on his speech therapy in a way he’d be interested in, which always comes back to music. I was looking for songs that had a lot of the sounds he needs to work on: B’s, P’s, S’s, L’s, and R’s. I remembered the traditional ‘Baby Bumblebee’ song, and Atti thought it was the funniest thing ever. He loves screaming OUCH! at the top of his lungs and falling back on the bed dramatically. So with that success, I kept going and made up verses for all the rest of the letters he needs to practice.

I’m bringing home a baby bumblebee
Won’t my mama be so proud of me
I’m bringing home a baby bumblebee
OUCH! It stung me!

I’m picking up a purple porcupine
I will be so happy when he’s mine
I’m picking up a purple porcupine
OUCH! It poked me!

I’m scooping up a silly slimy snake
I’m so happy, oh for goodness sake
I’m scooping up a silly slimy snake
OUCH! It bit me!

I’m looking at a lizard that’s lean and long
While I sing this happy little song
I’m looking at a lizard that’s lean and long
HEY! It licked me!

I’m rounding up a really rotten rat
Oh just think what mom will say to that!
I’m rounding up a really rotten rat
P.U! It stinks!

A note about use: Since I put this on Youtube I’ve had some professional interest in this. So feel free to sing it with your kids, use it in a classroom, send it to friends (with a link back here), enjoy it all you’d like. But please don’t reprint the lyrics (including on your blog) or record the song without my permission.

Filed Under: 'dis Ability, Atticus, mama musings, Stuff I Make

Lemonade out of Lemons

April 15, 2013 2 Comments

Last week and this week have been – and continue to be – challenging in a way that makes me accept every scrap of pity people send my way as the mom of a child with a disability. Bear has already started work in his new building, which is an hour and 45 minutes away. Which means that he comes home one evening during the week, then on the weekend, and the rest of the time he’s in a hotel while I solo parent it.

Of course this would coincide with two weeks stuffed with appointments. Every day last week, and multiple appointments every day this week, including another surgery on his little boy parts. I often say that nobody doles out motherhood medals, but this week? I’ve freaking earned one.

Last Thursday Atti had an appointment with a pediatric neurologist. We’ve been waiting for this appointment for months, and once he visits we’ll start working on scheduling the big surgery that will change everything for him. This was a very big deal, and, of course, an hour and a half away from home.

I planned ahead the night before and imagined Atti and I leaving before the bus to school was even scheduled to arrive, me armed with a change of clothes and snacks and diapers and drinks, driving through the gorgeous Altamont pass and enjoying the view of the verdant rolling hills.

Of course, that’s never how these things go. After a very early wakeup call thanks to Bear leaving his phone alarm on while he was in the shower, I spent the morning trying to get Atti moving, and myself moving, and Bear out the door for three days away, and before I knew it, I should have been on the road 15 minutes ago.

I shove Atti in the car and hit the road and after about 45 minutes of frantic driving trying to make up for lost time, I look down and realize my needle is on E.

I find a nearby gas station and as I’m pulling in I see lights in my rearview mirror. Another ticket. This time for expired registration. (Which is Bear’s job.) The officer was very sweet to me and let me pump my gas while she ran my plates, but I had pulled in funny, what with the cop behind me and all, and only the premium gas hose could reach my car. So I paid way too much for a few gallons of gas, since I couldn’t exactly start my car up and repark while the police officer was making sure I wasn’t a fugitive, accepted my ticket, and got back on the road.

With only a few minutes left of our journey the office calls. The doctor had to go into emergency surgery and had to cancel all of his appointments for the day.

So since the morning was such an epic failure, the rest of the day had to make up for it. We were in the Bay Area, the weather was beautiful, I was with my favorite little buddy, so we decided to cast off all other responsibilities and make this MAMA AND ATTI’S DAY OF FUN!

New toys
We went to a fancy toy store where Atti picked out some letters and I picked him out a tool kit…

New fabric
We went to a quilt shop where I picked out some fabric treasures, Atti got a sucker, and everyone in the store fell in love with him…

Splashing in the fountain
We played in a fountain we found in the center of town…

At the nursery
We picked out some flowers for the garden…

Reading
We went to the book store where Atti read his book while I got to read my own…

snuggle
And we finished the day off in our favorite way. Lots and lots of snuggles.

So a long drive, a ticket, a frantic morning, expensive gas, no doctor’s appointment…shrug. It was still the best day.

Filed Under: 'dis Ability, Are you kidding me?, Atticus, mama musings, The Good Life

Placerville here we come

April 12, 2013 5 Comments

Al Fresco
Last weekend, amid history being made and discovering new sisterfriends, we also took a trip up to what we got word will be our new hometown. Placerville is just East of Sacramento, a short twenty minutes away from the edge of the city, resting at the foot of the Sierra mountains. It’s an old gold mining town along the southern route to Tahoe and it’s covered in trees and streams and history.

Cary House
While we’ve been waiting for Bear to start this new job and find out where our final destination was, we’ve heard all kinds of rumors – maybe Fresno, maybe Davis, maybe Ukiah – and when some of them didn’t pan out I was relieved, and when others didn’t pan out I was heartbroken. But it all worked out for the best because I cannot imagine a place I would rather set down roots than what I found this weekend.

Bear’s employers stressed that he couldn’t commute. He HAD to live in Placerville. Apparently in Gold Country there are townies, and there are tourists. And they need us to be townies. I could not be more happy to comply. I’ve been looking for a hometown my whole life. We were told we need to really become a part of the community – go to Chamber of Commerce events, enter things in the fair, go to the Farmer’s Markets – it’s like I’m being thrown in the briar patch. Oh all right, if you insist. Sheesh. Give me everything I’ve ever wanted, why don’t you.

Emigrant Jane
We strolled down Main Street and played tourist, until we earn our Townie status, and it’s like this place was custom made in my dreams. Wonderful restaurants, historical markers, antique shops. There was a store where a couple reclaimed old furniture and painted it in bold creamy colors, a children’s clothing store where a gal with a nose ring sewed the clothes she then hung on the rack for sale, an independent bead store, gourmet food shops selling special cheeses and locally made mustard, and an independent yarn store. And then. Not only was it an independent needlepoint store, it was a NOT FOR PROFIT CO-OP needlepoint store. I got to chatting with the ladies inside and they told me all about their Sit ‘n Stitch days, and the locals only secret for where to park all day without paying.

Sweetie Pies
When we were up this weekend, we stopped at this place – a restaurant and bakery in a converted victorian house – ate homemade pie and bread on the closed in porch, and made instant friends with our dining neighbors. One table couldn’t get enough of Atticus, even giving him a hug on their way out the door, and at the other table…Oh the other table. A lady came in with a gorgeous black lab named Gatsby. There were dogs everywhere we went in Placerville, including the restaurants, and Gatsby and Atticus fell in love. Gatsby’s owner and I laughed over our literary nerd-dom and Atti refused to eat his lunch so he could wheel his chair over and drape himself across Gatsby’s side for a big hug.

This is the place where we’re going to make all our dreams come true. And I have some big dreams.

Filed Under: Atticus, Grand Schemes and Other Plans, My Dreamhouse in Progress, The Good Life

Change is hard

April 2, 2013 Leave a Comment

We love our OT
We have had tremendous good fortune in Atti’s therapists and case workers and doctors. There have only been a couple of people that weren’t good fits, and everyone else has been the most dedicated, kind, supportive professionals I could ever dream of.

One of our most favorites is Atti’s Occupational Therapist, Margie. Atti fell in love with her from day 1, and now every time we drive to the school where he receives therapy he bounces in his seat and says “Let’s go see Margie.” His poor PT has had to put up with playing second fiddle as he fawns all over Margie, but she just shrugs her shoulders. She has to stretch him, Margie gets to play. It’s a role our PT is used to.

Margie is the person with the most childlike spirit I’ve ever known. Watching her play with Atticus, and sincerely enjoy it as much as he does, has completely changed my approach to parenting him. Playing silly games isn’t something I do until I can distract him with something else and get back to my day. Now it is my day. And I’m remembering how much fun it was as a kid to play pretend, and imagine, and explore.

Margie and Atti
Margie started her retirement last week, and so now we’ll be embarking on a new relationship with a new OT, and finding new ways to keep Margie in our lives. Because we’re not letting go of someone this special.

Filed Under: 'dis Ability, Are you kidding me?, Atticus, The Good Life

World’s Youngest Perfectionist

March 25, 2013 3 Comments

Wary

Atti has a significant speech delay, and we’re always trying to unlock the mystery of exactly how to help him past it. You would expect a speech delay in a kid with Cerebral Palsy, it’s even more common than needing a wheelchair since all those tiny mouth and tongue muscles have to coordinate together in micro movements at a rapid pace, but Atti’s doesn’t seem to be so clear cut.

For one thing, he’s capable of making a whole lot of sounds he just doesn’t use in speech. Sometimes I think this kid is going to be the next Michael Winslow. He imitates the car, the dishwasher, the Gu-Gung of the Law and Order gavel, the static of an HBO production bumper. And his singing. You guys, his singing. He hears a song three times and he can sing it perfectly. He sings songs I’ve never heard. He sings songs I don’t even realize he’s heard as I’m flipping between radio stations. He sings introductions to podcasts he’s only heard second hand through my earbuds. He sings songs that I made up in a waiting room once and completely forgot about. He sings and sings and sings. Often jumping off a word in the conversation or choosing a song that can answer a question. He’s a prodigy.

So with that kind of skill, you’d think, or at least I would think, that he’d be able to communicate in words. He’s capable of making the sounds (close enough to be understood, anyway), he gets the meaning of them, and yet, he doesn’t talk to me. He repeats scenes from his favorite books or television shows, he’s constantly repeating the sayings his toys make, but if I ask him what he learned at school that day? Crickets.

At our last IEP I was sharing my frustration about this with his team. I really want him to enter Kindergarten in a typical classroom, because he’s freaking brilliant. He sat on my lap as I texted Bear and he read his first sentence today. I love you. If he had eyes that could stay on the same line I think he probably would have done it years ago. But if he can’t communicate with his teacher or follow directions or answer questions, that could be a real hindrance. School is all about performance. You have to be able to prove you know stuff on cue.

In that meeting one of the program directors said, “You know, if we were talking about an older child, I’d almost wonder if he was a bit of a perfectionist.”

She blew my mind. Perfectionist. Of course. He is my child after all. He certainly has some speech issues to work through, but his real communication problems aren’t from a lack of ability. When he sings a song, each word has a place. There is a right word in every moment. When he repeats the things his toys say, he can get it exactly right. He can be understood. He doesn’t have to guess. We don’t have to guess. He doesn’t have to fail.

Since that meeting we’ve been working on reinforcing him whenever he makes an attempt, and slowly, slowly, slowly, we’re seeing our efforts bear fruit. Now when he wants to tell me how much he loves me, he’ll use a saying from his toy, but with a twist. “You make me happy too…Mama!” He’ll say with a gleam in his eye. Watching to see if I caught how he used my name instead of the name his toy uses. He’s starting to repeat what we ask him to say. Still not originating speech, but being brave enough to try and follow our lead.

Our last time at therapy we were trying to get Atti to play with a basketball hoop, but he was not feeling it. Instead of stretching his arms over his head like we wanted, he’d toss the ball somewhere in the direction of the net and then try and talk us into letting that be enough. I know this because he was using my words against me. “Good try, my sweet boy!” “Excellent work!” “Atti did it!” That’s apparently what I say to him when he tries, and so that’s what he said to me to tell me he was.

Filed Under: 'dis Ability, Atticus, mama musings, The Good Life

Our new birthday tradition…Wishing Lanterns!

March 18, 2013 2 Comments

Atti's Birthday Lantern
One of my many crafty goals for the year is to start seasonal family traditions. As a religious person, I have a reverence for ritual, and I want the power those rituals evoke to be present in my family life. It is one of my foundational believes that we can mold our lives into anything we want through the power of our creativity, and one thing I want to use that power for is to make the people I love feel treasured. So I want to create rituals and traditions that create moments where the people I love feel honored, and see how important they are to me.

I’ve been thinking about something I could do as a birthday tradition, and I really loved the thought of using that time to set goals or list hopes or make wishes – using a birthday as a chance to evaluate and refocus priorities. But the only ceremony I found with that agenda involved letting balloons go, which is terrible for the environment. So after a lot of thought and research I came across these paper lanterns.

If you’ve ever seen Tangled, you’ve seen these in action. They’re commonly used in ceremonies all throughout Asia, and the glow filling up the night sky is absolutely stunning. I ordered some white lanterns off the internet, and then one night after dinner we all sat around and drew on it, listing all the things we want for Atticus this year.

 

Lighting the Birthday Lantern
The lanterns are made to be let go, but that’s not great for the environment either, mostly because it can be a big fire hazard. So once we lit it, instead of just letting it float off, we used a long piece of wire (has to be wire so it doesn’t burn or melt) and tethered it to a tripod so it couldn’t get out of our sight.

 

Floating lantern

 

Then we laughed and snuggled and watched the lantern dance in the breeze.

 

Atti's birthday

 

 

Watching the lantern fall

 

Once the fuel burned up, the lantern floated gently to the ground. I was hoping it would catch the paper on fire and we’d have a great symbolic burning, but the paper must be treated with something because the best it did was smoke once we held a match directly to it. So not quite as satisfying at the end, but no fields burned down, no birds choked on a balloon, and we all got a chance to hold each other close and watch something beautiful as we celebrated another glorious year with this special little guy. It was magic.

Filed Under: Atticus, mama musings, The Good Life

Year of Pleasures: Family Naptime

March 12, 2013 1 Comment

Family Naptime

This year I’m really starting to notice the changes of getting older, and Daylight Savings Time is a big one. Holy Moley did it ever work me over. Luckily I wasn’t alone. Naptime and snuggle time in one is better than Oreo cookies.

Filed Under: Atticus, crazy cat lady, Year of Pleasures

Atti recovering

February 11, 2013 2 Comments

Atti recovering
Last Wednesday Atti had another eye surgery. His second, but probably not his last. Did you know there are eight muscles that surround each eye? And they each have to work with precision not only with the other seven muscles, but with the eight muscles of the other eye. It’s a miracle we aren’t all wonky eyed. Controlling muscles is kind of a hard thing if you have CP, and particularly in Atti’s case where one side of his body is more impacted than the other, so getting his eyes pointed in the same direction is going to be a long long journey.

Of all of his surgeries, this one is the hardest on me. Drops in the eyes every few hours, can’t get his face wet for weeks, we have to guard carefully against infection, he needs a ton more supervision, and the healing process is absolutely gruesome. His little hazel eyes look bright blue up against the solid red of his eyeball, the skin around his eyes puffed up and blackened like a boxer.

But he’s already so happy. He’s actually watching television with me – he’s rarely had much interest before – and now when we read books he actually follows my finger along the words. He’s been singing and talking and jumping and rejoicing, far more excited than I expected him to be. I certainly don’t act like that when I get new glasses.

But for me, glasses are just a simple corrective thing I need. Poor eyesight is a nuisance but it doesn’t keep me from expressing myself, or participating in anything I want to participate in, or being recognized by the world. But it does for Atti. His vision is great, but his depth perception is bad, which means that while he can read every individual word I put in front of him, he can’t read a book because his eyes can’t follow the lines. He struggles to draw or color or write his letters. He fails all the tests at school that require him to put items somewhere – puzzles, sorting, all kinds of things I didn’t even realize were important.

And people make judgments about him. That little wandering eye tells people things about his mind that just aren’t true. They see that eye go off and they think he’s more limited than he is. They think he’s simple or intellectually disabled, as if it was intellect that made our body parts obey. They think he’s not listening to them and so they can talk about him as if he’s not in the room, as if he can’t understand, as if he has no opinion or ability at all. If most of our conversation is through body language and eye contact, a simple thing like a wandering eye means he’s got two strikes against him.

Hopefully not for long. The results so far are promising, but this isn’t the end. Hopefully it will be enough to allow him to participate at school more, which is what I really want. It would be nice if people would stop making judgments, but what I want most for him is to be able to do what he loves. If he could read books and write letters, his eyes could wander around the globe for all I care.

Filed Under: 'dis Ability, Atticus

No time for sickness

February 6, 2013 126 Comments

 

Snuggles
Already this year Atti had a surgery to put tubes in his ears, now he’s having surgery to fix his cute little wonky eyes, and he’ll have two more surgeries in the upcoming months to fix other things that don’t work right when you have cerebral palsy. Of course, working around surgeons and specialists I don’t have the luxury of waiting until school is on a break. So he misses a lot of school. Which means that I have to do everything I can to keep him healthy the rest of the time. When he’s missing weeks at a time recovering from surgeries, there’s no way I can let some sniffles slow us down. I’ve got to use everything I’ve got to keep him well, and when he does get sick, get him better fast.

I’m excited to be partnering with Mucinex to share some ideas to get through this cold and flu season with a smile. I don’t often have an excuse to slow down and take a whole day to play, so I want to get through the whining and the discomfort as quickly as possible to use that sick time to create some special memories. In future posts I’ll be sharing some great sick day activities to make this time count, but for today I want to talk prevention. Since Atti was born in February and with significant respiratory issues, I was that mom that wouldn’t take her child in public for the first six months of his life. I got some grief over that, but he never got sick and I don’t regret it!

Nowadays we wash our hands religiously, maybe a little too religiously. I have walked in on Atti pulling wipe after wipe out of the container as he sings, “This is the way we wash our hands..” and laughs his head off. Apparently he thinks Mama’s a little crazy. We’re also big juice drinkers around here. Whenever I hear Atti start to sniff I pump him full of orange juice and stop that sniffle where it stands. And of course we’re big believers in the power of snuggles.

I always say it in the disclaimer, but let me emphasize here that I only work with companies I can wholeheartedly support and that I spend my own money on. I turn down a LOT of ad partnerships. But I jumped on this one because I actually do use Mucinex for myself and my family. I first tried Mucinex when my doctor recommended it to me, and it’s now as much a staple for sickness as tissues and ginger ale. This is a product I would recommend to anybody, whether I was being sponsored or not.

When your child has a bad cold, you both can feel miserable. Children’s Mucinex is the #1 children’s brand for relieving congestion* and provides fast acting relief from your child’s worst cold symptoms. Try Children’s Mucinex Multi-Symptom Cold if your child needs relief from stuffy nose and chest congestion. Always use Children’s Mucinex Multi-Symptom Cold as directed. (*Based on IRI unit share data for the 52 weeks ending November 2012)

Mucinex is offering a $2 off coupon so you can try it for yourself. Just click the link and you can start saving.

But if you leave a comment you might get to save a whole lot more with a $100 gift card to CVS! We wanna hear how you keep those sick kids entertained, and one lucky commenter will get to win! So good luck, and tell me: What activity makes your child smile when under the weather?

 

No duplicate comments.

You may receive 1 total entry by leaving a comment in response to the sweepstakes prompt on this post.

This giveaway is open to US Residents age 18 or older. Winners will be selected via random draw, and will be notified by e-mail. You have 72 hours to get back to me, otherwise a new winner will be selected.

The Official Rules are available here.

This sweepstakes runs from 2/6/2013 – 3/31/2013


Be sure to visit the Children’s Mucinex Multi-Symptom Cold page on BlogHer.com where you can read other bloggers’ reviews and find more chances to win!

Filed Under: Atticus, Grand Schemes and Other Plans
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