Monday, December 09, 2013

See Us in TODAY Show Piece on Harper's Playground!

I have been so impressed with Harper's Playground ever since I made friends with Harper's dad, Cody Goldberg. He and his wife raised more than a million dollars to build an inclusive playground for children at Arbor Lodge Park in North Portland. This is NOT a place just for disabled kids — much like the iPhone, good design makes sense for EVERYBODY! Such an inspiration!

Check out this (sadly, very short!) piece that aired Nov. 10 on the TODAY show to learn more. Watch for Malachi and Jaden on the adaptive merry-go-round, me putting Malachi into one of the swings and the back of his distinctive red Mulholland walker!



Visit NBCNews.com for breaking news, world news, and news about the economy


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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Wednesday, December 04, 2013

Practice Joy; Change Your Life

Stop. Whatever you are doing right now, whatever is going on around you, just stop.

Take a second, right now, to concentrate on the feeling of happiness. Close your eyes briefly and feel the swelling in your chest. If it helps, you can start by thinking of your favorite person, or your favorite place on Earth or a really cool moment in your life. But as soon as you can, just concentrate on the feeling of being happy. You can even use your imagination to pretend to be really happy, and see how it feels exactly the same as the "real" thing.

Feel the tingling in your toes, feel the energy building in your bones, feel your heart soaring and a smile dancing around your lips. Go ahead and feel as happy as you can. Pull in light and love to your body and reach for the highest level of happiness you can find in your mind. Build yourself into a silly frenzy of joy, gratitude and love about absolutely nothing and absolutely everything.

Now. What does it mean that you can generate that feeling all by yourself? What are the implications in your life that this feeling is something you can conjure independently?

How many times do we buy things looking for that feeling? How many times do we "need" energy drinks, fast food meals, a new dress, all in our quest for that feeling? How often do we look for that feeling in alcohol, cigarettes, drugs or other addictions? How many times have we looked for it in television, hobbies or other diversions? How have our purchases of cars or houses ultimately been about that feeling?

Think bigger. How often have we made a pact with ourselves that once this happens, then I will be happy, but months later find ourselves still seeking? How much of our identity or status is wrapped up in trying to justify that feeling? How much time do we spend demanding our friends, family and partner deliver that feeling to us? How often are we disappointed that it doesn't come?

If this feeling is something we can generate by ourselves once, we have the ability to generate it again and often. If we can generate it a little bit, we can practice to generate it a lot. If we can generate it when we are in easier situations, such as a beautiful sunset or a loving moment, then we can practice until we can generate it anytime.

Any.

Time.

Do you realize how huge that is?

It's only a thought away.

So if we can drink from the well whenever we want, what is stopping us? Why do we feel the need to justify our happy feelings — put them in a box with a ribbon around it or hack someone else down to feel superior over them? Why do we spend all this time, energy and money seeking something that is as free and simple as breathing?

You can call it love or bliss, Christ or Nirvana. You can get there through thoughts, prayers or meditations. Whatever the shortest path for you is. All that's important is that you see how much more difficult and ultimately flawed it is to seek it in the external world. There is no need to find justification for your happiness. Just do it.

Practice joy. Be happy. You've already proven you can. There is nothing stopping you except you.




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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Friday, November 22, 2013

My Diary Entry From Seven Years Ago Gives Me The Willies

I'm reading a journal entry from seven years ago and I have goosebumps.

I've spent so long seeing myself as a career woman who got desperately derailed by Malachi's diagnosis. I worked very hard through high school, college and beginning reporting jobs to climb as high and as fast as I could. Then I suddenly dived off that path, so what did all that hard work matter? 

But this journal entry comes from before I had even started working. In many ways, it validates the life I have now. It lets me know that, by and large, I'm doing exactly what I wanted to be doing, albeit not for pay and not in the way I imagined doing it.

The date was Sept. 11, 2006. I had just graduated college and job prospects were dim. Here is what I wrote:


I'm sitting here counting how long I've been unemployed. Not quite three months, though it seems much longer.
I've spent almost entire days on the couch, sleeping or staring into nothing. I've gotten past the point where days of not doing anything are restful or relaxing.
These days are boring, unsatisfying and depressing. Lately, I've come out of my depression a little to feel the need for action. But mostly, I'm unsure where that focus should be directed. Job leads at both the AP and The Sentinel have stalled through unexplainable delays and choosing another road to start down is difficult because there are so many options, depending on how far afield I want to look. It feels like at some point Providence comes in and says this is what you are supposed to do. But how long should I wait for that?
Mom says I need to make a declaration to God about what I want. A segment on TV about a woman who died in the World Trade Center towers said that I need to make a list about the things I want to accomplish in life. So here I go.


• I want to be the greatest service I can be to people in my professional and personal life.

• I want a job that makes me feel like I've made a difference.

• I want to remember to make the smallest impact on the environment that I can.

• I want to be able to feel love at all times and remember to love and be loved.

• I want to feel comfortable with anyone and be able to make anyone feel comfortable.

• I want to stand up for myself and loved ones when necessary.

• I want to succeed professionally and be well respected by my peers.

• I want to have financial security and remember that ensuring this does not mean earning enough but saving enough.

• I want to always consider cogent arguments and, even if I do not agree with them, recognize where they come from.

• I want to be able to feel what I feel and not feel bad that I'm not feeling something else.

• I want to remember to help people whenever I can.

• I want to know what I am worthy of.

• I want to feel special.

• I want to travel more.

• I want to experience many different things in life.

• I want to teach my children to be independent and self-reliant.



The writing I do here on this blog and the questions I answer for other parents on the special needs path encompasses so many of those things. Even though life is linear and I don't owe my former self anything, I feel a measure of satisfaction that I'm not so far off from who I hoped I would be.

Fun with hats and costumes while in a waiting room.



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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Monday, November 11, 2013

The Secret to Life



Dearest Children,

My darlings, you are three years old now, so allow me to pass along to you The Secret to Life. It goes like this:

Step 1: Decide what you want.

Step 2: Ask for it in the right way.

Step 3: Get it.



That's it.

Granted, most of your life will be spent figuring out Step 2.

But here's a hint.

STOP. WHINING.


XOXO,

Mama





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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 



Tuesday, November 05, 2013

My Kids Say the Darnedest Things

I am really loving this age with my kids. They are a little more than 3 years old and they are constantly saying hilarious things.

I remember about the time JJ first started walking, I often felt like I was living in an absurdist French comedy. I would be dealing with some crisis — say Malachi had a blowout — and in the background, JJ would be slowly and methodically putting all of the plastic dishes into the bathtub for no apparent reason while loudly calling: "BOB BOB BOB BOB BOB BOB." I would step outside of myself and think: "Wow. This is kind of hilarious."

These days the hilarity comes from the things they say: the grown-up phrases they are trying on for size and the imprecise conclusions they reach as they try to make sense of this mixed up, messed up world. Their cute babbling and slurry 3-year-old talk is occasionally punctuated by these windows into the big kids they will soon be.

Here's a recent one:

(In a family dressing room at a pool party)
Malachi: "What is that thing called?"
Me: "It's a bra."
Malachi: "What does a bra do?"
Me: "Ummm... It keeps my boobs all together."
JJ (completely serious): "(Otherwise) we'd have boobs EVERYWHERE!"

And another:

(Malachi pointing repeatedly to the crab on his shirt.)
Malachi: Gropygrope, gropygrope, gropygrope. Crabs say "gropygrope."
Me: Crabs say "gropygrope"?
Malachi: They sure do.

And another:

(JJ, scheming on my PB&J)
Me: OK, you can have some.
JJ (said like a tiny wizened diplomat): Thank you for giving me a piece of yours. You are a good brother.

And one that displays Malachi's adoration of letters:

(I walk into the room and Malachi breaks into a huge smile and reaches for me.)
Malachi: Mommy.
Me: That's me!
Malachi: Spell Mommy.
Me: M-O-M-M-Y
Malachi smiles beatifically, as if that is the most wonderful thing he's ever heard. Then, in a reverent whisper: "I can also call her Shasta."




Love it.




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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Monday, October 28, 2013

How to Make Falling Down Fun and Educational



I'm really excited about a game my son came up with, recently.

He thinks it's hilarious to fall down.

Now, you wouldn't think I would be especially stoked about that. After all, he could hurt himself. But I feel like this is an exciting opportunity because it's turning learning how to fall into something fun.

The Anat Baniel Method, our primary form of therapy, talks about falling down as being a very important part of learning to move. If children don't know how to fall down safely, they are paralyzed with fear about moving. In fact, ABM describes walking as falling down and catching yourself with your feet. This makes a lot of sense to me when I watch babies move. They lead with their head and lean towards interesting things. When they lean far enough off their center of gravity, they either fall on their face, or catch themselves with their hands (crawling) or feet (walking).

So I was excited when Malachi started thinking falling down onto me from standing or sitting was really funny. I think this could be an "in" for getting him to learn about how his body interacts best with gravity.

The game we have come up with is he holds on to the bottom dresser drawer while sitting with his legs in various positions.

I guess I should stop and explain this part of the game. A couple months ago, I asked him if he wanted to be sitting "W-style." This is where you sit on your bottom with your knees on the floor in front of you and your feet behind you. He loves letters and the alphabet, so he quickly asked to be "X-style," the next letter of the alphabet. I put him in "criss-cross applesauce" and he laughed and asked for "Y-style" and on and on. Now it's become our mission to figure out sitting positions for all the letters of the alphabet. Once we finish, I think it could be a really cool children's alphabet book. And yes, I'm working on it.

Back to the falling game. So, Malachi holds on to the dresser drawer and asks for a certain sitting style. I put a tall stack of pillows on one side and a single pillow on the other side, then I sit behind him. This way he can choose if he wants to fall a long way or a little way. It also gives him an opportunity to realize how to get himself back up onto the drawer from the tall stack.

So, he holds on to the drawer and says "I'm falling!" or "I'm so afraid!" or "Oh no!" while giggling. I ask him if he wants to fall on the tall pillow or the short pillow or on me. He then tries to position himself so that when he lets go, he falls on his chosen surface. Sometimes he falls where he wants to, sometimes he doesn't, but he is enjoying himself and learning about his body, so I think it's pretty great.

Another thing that is pretty great? While playing this game, he occasionally lets go and doesn't fall for a few seconds. You know what that is? That's sitting independently. Heck yes! Talk about turning "failure" into success!

Now, if I can come up with a game where the object is to catch yourself with your hands, we will be off to the races!



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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Saturday, October 19, 2013

I Have A Walking Walker Who Walks!! (And How We Got There)

It's been eight months since we took this video:

(video)



A few months later, we received a donated Mulholland Walkabout of our very own to use at home. Despite our preferred therapy of the Anat Baniel Method (ABM) being generally against equipment like walkers, we did use it at home.

Malachi would stand in it and go... pretty much nowhere.

I was very conscious of not wanting to push him to walk in it. This was a concession to an ABM tenant, which I do believe. It goes something like this: people don't like to be pushed to do things. The more you push, the more they will resist and the less they will do it when you are not there to push. This includes kids.

But, you say, I forced my kid through kicking and screaming to do piano lessons at 4 and now he's a virtuoso!

Well, the vast majority of kids who are forced to do piano lessons (or whatever) quit as soon as they are able. The ones who keep going? They do it because they want to, either because they found a way for it to be fun or because they want to please you. That's it. So, if you *really* want your kid to be a piano virtuoso — and be happy doing it — find a way to make the piano fun and they will practice on their own.

But, you say, life is hard work! Kids should learn how to do things they don't want to do. 

To that I say, kids should learn how to do things they don't want to do only if it is in pursuit of a goal of something they do want to do. Hey there, sport, is it your deepest dream to become a piano virtuoso? Yes? Then by golly, let's play the crap out of that piano. Would you rather be an airplane pilot? Sweet! In that case, let's spend hours learning all about instrument flight ratings. Working hard at something you don't want to do to get to more hard work that you don't want to do just becomes a never-ending defeatist, depressing cycle.

Ya dig?

So, I tried — as much as my own psychology would allow — to only put Malachi in the walker when he wanted to be in it and take him out when he said he was done. While I did ensure certain activities — like watering the plants or "playing" Dance Central on the Wii — were associated with being in the walker, I tried really hard not to push him to walk in it.

For months, I fiddled with settings and footwear; I lugged it to children's museums and splash pads; I interrogated moms and therapists. All to no avail. The most Malachi would do is inadvertently twirl it around and be really upset about it.

By the end, the conclusion I felt most likely was that it was my fault. Even though I was trying really hard not to treat the walker like a big deal, he could clearly sense that I wanted him to use it. I was putting too much pressure on him and he didn't want to try and fail.

(Corroborating evidence to this effect is in JJ's continued refusal to make even the slightest effort towards learning how to get dressed by himself. We're working on it.)

But one day — in a fit of WTF??? rage — I showed the above video to my husband and he said: "Yeah, that's really weird that he could walk in it before." Then he said: "Look, his shoulders are in front of his body."

Oh. I didn't think about that. I was too busy blaming myself for bad parenting.

The very next day, I loosened the top strap so that Malachi's upper body sort of hung on it, instead of strapping him in tight and secure like I had been doing.

He took off immediately. 

It wasn't all swelling music and tears of joy though. He would get his feet stuck together and start to freak out, so to get his mind off what he was doing, I grabbed a soft, stuffed ball and "threw it" (handed it) to him and got him to walk a few paces to me to give it back. We played "hall ball" all over the place for 15 minutes. Here's him at the end of all this, the FIRST TIME he was able to walk around at home by himself.

(video)


Do you hear what he's saying? "Walk! Turn around!" He knew exactly where he was going and how to get there. (By the way, where he was going is the oven to check the clock. The kid loves numbers.)

Two weeks later, I took him to Target to try him out in a larger, yet familiar space. The kid was RUNNING:



Just a few short weeks ago, I was feeling pretty hopeless. I posted in an ABM forum asking if people whose kids couldn't sit up independently before age 2 ever acquired the ability to walk, either supported or not. Conventional medical studies say no. Several people on the ABM forum said yes.

Still. I was doubtful that Malachi would ever independently move around in anything but a power wheelchair.

Today, I feel like I have a whole new horizon for Malachi. He is getting more and more capable in his walker and learning so much about how to move in a physical plane. He can stop, back up a little, turn either direction and is walking much straighter. (It's worth noting that all of his practice is at grocery stores and malls, flat, well-lit places he considers to be fun and functional.)

This has translated into much more bravery and independence with his electric car, his crawler and independent floor movement.

I am trying hard now to avoid beating myself up for not loosening the top strap eight months ago. Malachi is doing so well in the walker, but I can also see how he is developing some bad habits and incorrect assumptions about how his body interacts with gravity, such as toe-walking. I think it was good for him to have those eight months to roll around on the ground, learning about his spine, and to practice pulling to stand beautifully on flat feet with my help.

I do feel like we will be able to weave current skills like flat feet into his walking habits eventually. But even if he does acquire lifelong bad habits that will stunt his development later, as ABM contends, I feel like it's time for our family to broaden our focus away from pure physical development and towards social and emotional development. Now that he is in preschool, I think it is the perfect time for him to start being independently upright even though he can't get there by himself yet.

So, I may not totally agree with ABM's interdiction against using equipment, but I do agree that the key to success is working smarter, not harder.

Wednesday, October 02, 2013

Moms Speak Out on Shocking Lack of Cerebral Palsy Research

Today is World Cerebral Palsy Day and to celebrate, Ellen of LoveThatMax.com got many of us who blog about our kids with cerebral palsy together to talk about the shocking lack of research money that goes towards cerebral palsy, especially when compared to other neurological and childhood ailments. 

Here's what I had to say on the matter when Ellen asked me for a quote. Head on over to her blog to read more of the facts on cerebral palsy research and what you can do about it!

I was frankly shocked to learn how little of the money people donate towards "Cerebral Palsy" goes to cerebral palsy medical research. It's such a huge population of children with disabilities — something many organizations purport to aid — and yet so very little is being done to understand and treat this condition.
Part of me feels like this is an institutional bias against children with brain injuries versus adults with brain injuries. With an adult who has a stroke, say, it's easy to imagine the function they had and the function they could have again with proper treatment and care. But with a child, it's much easier to brush it off as: "They were born that way, so that's the way they'll always be" and never put the necessary resources towards rehabilitation.
There is so much exciting neuroscience out there now about how to tap into the brain's potential to rewire around damage, but it's taking an excruciatingly long time to trickle down to children with cerebral palsy because, I believe, those children and those young parents have very little time and money to address it on a national scale.
Instead, many of us are paying thousands, if not tens of thousands, every year to do what medical science refuses to — find treatments that work.

Please do what you can to spread awareness of this issue to your friends, family and representatives!

Jessie Kirk Photography

Wednesday, September 25, 2013

How To Make Love




(A Poem)


We are born into love.

Oceans of love come to us and we give of it effortlessly.

We know that it will always be this way.

Then Life happens.

To some earlier than others.

We are startled to discover that the love flowing through our fingers so freely before has become scarce.

And we are frightened.

We know not where love comes from, nor how to find it, nor how to make it.

It was there and now it's not.

And we despair that we shall never find it again.

But there are those who know.

Those who search in the blackness.

They know that love is formed under the pressure and heat of time.

Love is formed under the layers of rock and dirt and shit and death heaped upon us.

It is forged in the heat of suffering, stoked by pain and loss.

No, it is only those lost in the dark — mining in the depths of despair with nothing but their own dim light to guide them — who truly know the brilliance and rarity of love.

We miners know what a rare and precious resource love is.

We know how much work it takes.

Every day.

Not to give in to fear and cower in the corner.

Not to fall down the shaft.

Not to throw it out when we finally find it... and realize we have to leave the inky familiar.

Love is not easy at its source.

So, dig, miners, dig.

Look for the helpers in disasters.

Scour the tragedies for compassion.

Turn not away from the rocks, but examine them and crush them and demand them to yield every last bit of love.

Waste not a drop.

The world needs this precious resource.

If you are down in the darkest depths, in the very nadir of Life, that is good because that is where you will find love's source.

The world needs you to find it.

The love we find on the surface is cheap.

It is not genuine love.

Love takes digging and darkness.

So, dig, miners, dig.





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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Thursday, September 19, 2013

Let Your Children Play With Mine




You see my son and your brain tells you there's something a little different. You look at him a little longer than the other kids to figure out why he seems a little off. Then you see it. The jerky movements and awkward positions match up to a picture in your brain of the kids you've seen but never interacted with. You look away. 

After looking more intently at my son than any other child, you then cease to see him. You've been told not to look, not to stare, so you don't. You're a good person. You don't want him treated any differently. 

But here's the thing. He is different. He is interesting. You are allowed to be curious about that. Your children are allowed to be curious about that. 

You will have questions. Ask them. You will have kids try to play with him or his equipment. Allow them. It's OK. His body is made of flesh — he won't break any easier than your child.  His walker is made of steel, it won't break. 

I bring my son to the playground so that he can play with other children. Let them.




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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Wednesday, August 28, 2013

How Does One Talk to a Three-Year-Old About Cerebral Palsy?




"Hey, JJ, what did you do today with daddy?"
"We go to Shriners with daddy."
"Oh, yeah, that was Friday. Today is Saturday. What did you do this morning while mama and Malachi were at ABM?"
"Today is Saturday?"
"Yep."
(silence.)
"So, what did you do with daddy at Shriners?"
"We go to Shriners with daddy and mama and Kai-kai. We have appointment."
"Yep. Hey, JJ.... Why do you think Malachi has so many appointments?"
(Silence.)
"How come Malachi has appointments? Does JJ have appointments?"
"No, JJ not have appointments."
"How come Malachi has appointments?"
"How come Malachi have appointments?"
"It's because Malachi has cerebral palsy, remember?"
"See-bral pazie. What's that?"
"It means Malachi got hurt in his brain. Remember yesterday we were talking about where thoughts come from. They come from inside your head, in your brain. Malachi got hurt there when he was a little baby. Now he needs appointments to help him learn how to walk and stuff, like we are."
"We are walking."
"Yep, we are walking. Mama is walking and JJ is walking, all by ourselves. Kai-kai is learning how to walk like that too. No wheelchairs, no walkers. Just all by himself, like us. We are trying to teach him how at appointments."
"Malachi walk by himself."
"Yep, we are trying to help him learn."
"Mama hold."
"Oh. Yes, that's right. Mama holds Malachi to walk sometimes."
(long silence.)
"Here's the blackberries. Can you reach them? Here, pick only the ones that are all black."
"These are blackberries. Not raspberries."
"Yep, not raspberries. Don't pick the red ones, just the all-black ones."
"I like to do something."
"You like to do something?"
"Yeah, I like do something. Pick blackberries. And mama like to do something. And Kai-kai likes to do something, too."
"Yeah, hon. Kai-kai probably would like to pick blackberries. Maybe we'll try to bring him next time."




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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Monday, August 26, 2013

Stories of Random Acts of Kindness



For my 30th birthday, I asked for 30 people to do an act of kindness and tell me about it on my Facebook page. So far, nine wonderful people have told me their stories and I love them so much I thought I would share a few of them here.

Some people said they only remembered about my request after their act. But that was fine too, because it made me realize that we really don't have a forum for talking about this kind of stuff. Unless someone specifically asks you about a time you did a good deed, you're pretty unlikely to share it because you feel like you're grandstanding.

Well. Not here, my friend. I want to hear all of those stories because they show us how much good there is out in the world and how much power we have to change it, one deed at a time.

Just like these women I heard about yesterday, who are now my new heroes. They took it upon themselves to work a little harder at saving money and put that money directly into helping random strangers. It's a great story. I highly recommend you click on the link.

So, without further ado, here's some fantastic stories from my Facebook page.


Bobby
I thought of your acts of kindness challenge when pondering this decision. I decided to let ,my husbands high school friend that is going through a divorce stay in our home for awhile. This was a lot for me to choose this as an option, because we really enjoy our family time and for somebody else to constantly be in our home is a lot to ask. And to say the least he has a very large presence. However it is helping him out tremendously and I am happy that our kindness Wil get him to the next step along his path.

Nisha
I donated one cup of rice to a hungry Indian through http://bhookh.com/ in honour of your birthday. Happy birthday we love you!!! (This one is from Nisha, a fellow blogger, who wrote this lovely post about my challenge. Nisha is an inspiration!)

Leila
Thank you for the acts of kindness challenge - its given me the extra edge to speak up in two situations I wouldn't have otherwise. The act was very very small on my part, but it took an enormous effort on my part to actually speak to a stranger. I was sitting next to a woman with three kids, two at or under two, one on her lap and one screaming to get up. Screaming, relentlessly, the entire ride. I tried to smile at her and the kids, and the hard part for me, as I was reaching my stop, I told her I'd been there, and she was amazingly patient and doing a great job. For someone that prefers to keep her head down and never ever make eye contact, let alone speak, it was a big deal for me. Thank you for the push to reach out!

There's still a few days left in the month of August! And, if you remember from my original challenge, everyone who tells me about their act of kindness — preferably on my Facebook page — is entered to win their own "act of kindness" from me. What will it be? I can't say yet because I hope to tailor it to the random winner! So get out there and do some good!


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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Wednesday, August 07, 2013

30 Random Acts of Kindness
for My 30th

My birthday has always been bizarrely important to me. As a child, my otherwise mild-mannered self would turn into an attention-seeking monster proclaiming: "It's MY birthday," to anyone who would listen. My peers would shrug and accept my royal status as fact, which only added fuel to the fire.

But ever since my boys were born, my birthday (along with the rest of my life) has taken a back seat. I get out my need to plan a themed BBQ early in the summer and have no juice left for my own birthday in mid-August. Last year I didn't really celebrate my 29th birthday at all, figuring I would save up my energy for something really cool for my 30th.

Well, my 30th is less than a week away and I have no plans. This is not because I'm moping about entering my 30s, by the way. I strongly feel that I earned those years. And, I often hear from older friends that one's 30s usually trumps one's 20s anyway.

So, I want to celebrate but I realized that a party is not quite what I have in mind. I have been reminded in recent days how incredibly nice many of my friends are. So, friends, here is my birthday challenge to you, if you choose to accept it:

I want to log 30 random acts of kindness for my 30th birthday. My goal is to recruit 30 of you to do something unexpectedly nice for someone else, and then tell me about it on my Facebook page. There are only two rules:

1. It has to be something you weren't already planning.

2. You have to tell me about it, preferably on my Facebook page, before the end of August.

As added encouragement and to let you know that I am not just sitting on the sidelines here, I will randomly choose one of the 30 (or more???) entrants to receive their own act of kindness. I can't tell you what it is yet because I hope to tailor it to whoever is randomly selected, but believe me when I say it will be a substantial gift because I've learned that those are the most fulfilling to ME. And it is MY birthday after all! :D

Your random act of kindness can be to family, friends or strangers, but I encourage you to be as creative as possible. If you always make pancakes on Saturday, but add blueberries this time, that's awesome but it's not really what I'm after. My dream is for you to get out of your comfort zone, make a bold decision, take that next step to making the world a little better place.

But don't let that scare you off, either. As I mentioned in my post last January about giving, even just $2 can do an amazing amount of good. All I ask is that if you see a need and hesitate to fulfill it, please use my birthday as the added excuse and oomph to follow through! If it makes you feel good, then you're doing it right!

Despite some of my recent grumbly posts, I really have had some amazingly positive experiences in the last two years. I would love for those good vibes to continue. It would really be the best birthday present ever to know that 30 of my friends made a difference in the world just because I was born!

Think about it, will ya? Thanks! Much love to you all!



P.S. Here's a gratuitously cute picture of my kids sharing an ice cream cone. They thought this was hilarious.






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Need a great gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Monday, July 15, 2013

The Top 10 BEST TED Talks for Parents of Children with Developmental Disabilities






I am so in love with TED Talks. With more than one billion total views and counting, so is the rest of the world, apparently. These are talks in which experts and thought leaders get to talk to you about their research and experiences without word count limits or third party intermediaries.

Since Malachi's diagnosis, I have watched many wonderful TED Talks on the rapidly changing landscape of disability, both medically and socially. I've divided my favorites here into three categories: Neuroplasticity, Disability and Extracurricular.

None of these is very short, but you can bookmark this list (or Pin It)  and come back as often as you like until you've watched them all. I really think they are all extremely fascinating and important, especially if you are caring for a child with special needs. But, of course, I also think everybody should watch them because ultimately they are about the human experience!



What neuroplasticity is and how to make it work for you:


1. Baby Brains DO Recover, But Habit Hides It, by Karen Pape, M.D.




Dr. Pape has a wonderful blog and does more than any other medical doctor I've seen to bring in the realities of neuroplasticity into conventional treatment options for children with brain damage.



2. The Woman Who Changed Her Brain, by Barbara Arrowsmith-Young




Barbara Arrowsmith-Young conquered her early learning disabilities to develop the one of the first programs that capitalizes on neuroplasticity for children with disabilities.



3. Stroke of Insight, by Jill Bolte Taylor




A Harvard neuroscientist had a massive stroke in her 30s and managed to regain normal function, but in many ways she prefers her post-stroke brain. Lots of fascinating details about brain anatomy and how it feels to have a stroke.


4. The Game That Can Give You 10 Extra Years of Life, by Jane McGonigal




Treating your life like a game has massive long-term benefits.



Learning that disability is a difference to be honored and worked with instead of against.


5. Love, No Matter What, by Andrew Solomon




Andrew Solomon, a New York Times Magazine reporter, talks very movingly about his many conversations with parents of atypical children and how their struggles are universal. "A lot of the time, the question of parenthood is what do we validate about our children, and what do we cure?" he says.


6. A Broken Body Isn't a Broken Person, by Janine Shepherd




A world-class athlete overcomes massive injuries. A fascinating example of how much it is up to the patient — and not the doctors — to recover function.



7. The Opportunity of Adversity, by Aimee Mullins




Aimee Mullins was born without her lower legs but when she decided to see this as an opportunity instead of a crisis, her life changed and she became a highly respected model, athlete and advocate.



Extracurricular talks about how we learn, what speaks to us and how to approach the siblings of children with special needs



8. The Birth of a Word, by Deb Roy




Why we can't expect our children (with or without special needs) to practice the same thing over and over again and expect different results. Children don't spontaneously gain skills as it sometimes appears. It is always a process that begins with many "mistakes."





9. How Great Leaders Inspire Action, by Simon Sinek




This one is primarily about marketing, but to me it spoke volumes about therapy and how the why has to always be more important than the what to get results. While I want Malachi to crawl or walk, what he wants is to get to the book or the car and so that's what I need to focus on too and the rest will follow.





10. Recognizing Glass Children, by Alicia Arenas




About the siblings of children with special needs and how much they need our help, too.


BONUS!


Here's a funny comedian who also has cerebral palsy!




What about you? Have you ever seen a TED Talk that really helped you understand the disabled experience? Please add it to this list in the comments below!



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Need a baby shower gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Sunday, June 30, 2013

The Lies People Tell About Special Needs Parents

There's a narrative that floats around a lot about special needs parents. It goes like this:

Doctors told them their baby would never XYZ. But they didn't believe them. They refused to give up and now their child can XYZ!

This narrative is told over and over again. If you're watching for it, you see it everywhere.

I watch for it. I used to breathe it in, let it wash over me. I told myself: That's gonna be me one day.

Even still, I want it so badly. I want Malachi's disability to be conquered by hard work and determination. I want it to be just a matter of how much I refuse to give up. If only it could just be a matter of how much I refuse to give up....

But what I'm realizing is that whenever that story is told, it is never the whole truth. And, even more surprising, for every one of those stories, there are hundreds of parents out there who are trying just as hard and never giving up but yet somehow not getting amazing results. Those stories never get told, do they? Who would want to hear that story?

Malachi is three years old this week. If I am totally honest, his gross motor is nowhere near where I thought it would be by now on his first and second birthdays. He still can't sit by himself, let alone walk. If I can blot out from my memory the times when I thought he would have progressed so much faster, I can be pleased at the progress he's made in recent months. He is doing very well with sitting in a chair and I can even prop him up on the floor for a quick second or two without worrying too much about him falling over. His manual dexterity is improving greatly and his iPad skills are impressive. He is self-feeding quite a bit and though the quantity and variety of meals are a daily struggle, he is eating a lot more than last year. His speech is fairly clear and age-appropriate. He has pretend play. He is very funny. He can sight read lots of small words. He really loves numbers, letters and languages.  He can count in Spanish, French, Russian and Japanese and constantly asks us to translate things.

Yes, there are a lot of things Malachi is very good at. There are a lot of reasons for me to be proud of him and proud of whatever role I've played to get him here.

But that's where it gets murky. How much credit do I get for what he can do now? For example, was it my hard work that instilled a love of numbers in him? I don't think so. I think that in the chaos of an injured developing mind he just really finds comfort in predictable sequences. People tell me: no, you're a great mom, that's why. But that makes me feel squeamish because the other side of that coin is that if it was my hard work that made that happen, then why is it that every time I apply myself to the areas he struggles with I come up empty-handed? Am I just not trying hard enough? Have I — God forbid — given up?

I'm coming — round and round, like a buzzard circling — to believe that there is nothing I can do to fix Malachi. I come to this realization a lot, but it always butts up against that other narrative about the mom who never gave up and now her kid is OK.

It's so hard to know which obstacles are put in our way to overcome and which are our crosses to bear.

If there is an undeniable good to come out of this situation though, it is this: I have been humbled. I know now how little control I have on the world. I know now that life is not about checking off the right boxes, that my effort alone will never be enough to make the world right.

I know that even if Malachi does walk one day, it won't be because of anything I did. It won't really be because of anything Malachi did either. There are some kids who just don't ever learn to walk and it has nothing to do with whether or not they or their parents gave up. Then there are some who, it turns out, do.

Call it God. Call it fate. Call it whatever. But don't call it me.



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Need a baby shower gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Friday, June 21, 2013

Somebody Let Me Off This Roller Coaster!

They say that when a mother gives birth, her brain is flooded with oxytocin — the "love" hormone. This hormone lowers essentially the "pain" threshold of incorporating another being into your life by making it easier for your brain to change.

Since we got the diagnosis mere days after I gave birth, I worry that my brain has therefore been somewhat permanently altered to be manic about Malachi's disability.

Already today I have had enormous mood swings about whether or not I think Malachi might walk someday and whether what I'm doing is helping him get there. As I lay down to sleep... well, of course I can't sleep, can I? The weight of a hundred schools of thought and excruciatingly little scientific evidence of what works with kids with cerebral palsy is bearing down on my shoulders. I work myself into a frenzy debating the various options for what I think is quite literally the millionth time.

This afternoon I used Mom Power to locate a very small manual wheelchair for Malachi to try. Our hospital PT had been trying unsuccessfully for six weeks to get one but I finally just asked my local Facebook group of moms and got two offers within hours.

So, I sit Malachi in it and... what did I expect? He cried and was scared of falling out of it until the other mom helpfully offered her belt to help secure him in. Once he felt safe, I had to resort to some tricks to get him to even touch the wheels. Then I relaxed a little and started a game: "Touch the wheel; touch the iPhone." Then: "Push the wheel in any direction; touch the iPhone." And finally: "Push the wheelchair towards me; touch the iPhone." This took about 15 minutes and then he asked to get out, so I let him. Point being... he can probably use it. But he sure isn't going anywhere fast anytime soon.

Meanwhile, the other mom keeps telling me about what a long road it was for her now-8-year-old daughter to get to the point she is at today — walking with a walker, etc. — and essentially telling me that I shouldn't give up hope.

I believe her. And even though progress is screamingly slow with Malachi, I do see many of the elements he needs to walk already here now. As I drove away, the sun shone on puffy white clouds and I wondered how I could ever doubt that things will turn out OK. Of course Malachi can learn — he's awesome at learning and learning never stops! And hey, even if Malachi does use a power wheelchair his whole life, what's the big deal? He's smart, funny and personable. So, who cares?

I do, goddamn it, says a little voice that growls louder with each passing hour. I'm the one who's going to have to schlep him up stairs and transfer him into beds, etc., etc. And for goodness' sake what am I doing all this unconventional therapy for if he's going to be at the bottom of the charts anyway?

As I lay awake, I think, and not for the first time, that I've totally messed up, turned our lives upside-down for nothing. I agonize that I really need to do more therapy with him and that I don't put him in his various contraptions enough. I worry that the environments I put him in could be more conducive to moving and that I haven't even tried whatever idea it was I had two weeks ago.

I worry that if I get him a power wheelchair that I'm "caving" or "giving up" on him ever walking, because why would he want to try crawling if he already had something that propelled him around? (Indeed, he already does that with me.) But I worry that if I force him to be in a manual chair that it will just become another piece of unused equipment that he hates being made to try and I will lose out on all the developmental and social benefits an effortless propulsion system would offer him.

Then I worry that I care too much. And then I worry that I don't care enough. I wonder how I could have possibly thought a few hours ago that things were OK.

And through all of this I tell myself: STOP! It's not up to you! There isn't a magic bullet and you're doing the best you possibly can!

But before I know it, those compulsive voices start up again and I hear the tack-tack-tack of the roller coaster as it climbs to the sky.


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Need a baby shower gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Tuesday, June 04, 2013

8 Simple Rules for Teaching My Son With Cerebral Palsy




We are starting to get into the preschool scene and I felt I needed to write a letter that quickly described the approach we have to Malachi's cerebral palsy for his many new handlers. After I finished, I wondered how other people have approached their traditional teachers and therapists with the theories being promoted in this brand-new field of "Neuromovement." Remembering that the best way to receive is to give, here then are the suggestions I've outlined for our therapists.


To Malachi's preschool team,
Hello and welcome to our journey with cerebral palsy! Malachi is a bright and capable boy with a few serious motor challenges. As his family, we would like to share our philosophy and approach to these challenges, which at times may be different than what traditional physical therapists and doctors believe. Please read the following "8 Simple Rules" and if you have any questions at all, please don't hesitate to ask us!

1. Cerebral palsy is a brain disorder, not a muscle disorder
The approach is all about learning. I find it helpful to compare his gross motor learning to what I would experience with taking a dance class. Our belief is that it is not about forcing muscles and skeletal structures into a certain position. It's more like choreography. The reason he doesn't move the way we do is because he has different set of facts than we do. The key is making him aware of how he is using his body and encouraging him to imagine alternatives. If he can conceive of it, he will choose it because it will be easier and more comfortable than how he is doing it now. Trust in him to make the same decisions anyone would given the same facts.
2. Go from easy to difficult in every activity
Instead of just going into an exercise, try to start from something easy and build from there. Neurons are like trees — they start small and then get more and more branches. Each activity would ideally be structured this way for maximum benefit — start with something you know he can do well and build in small variations on the theme. This helps him feel more successful, in control and empowered but also helps build a relationship with you as a trustworthy person. Starting, as I've sometimes seen, with a very difficult activity when he's fresh and then backing off when he gets frustrated or overwhelmed teaches him the opposite lesson — that he is dependent on others for help and is more successful when he cries or gives up.
3. Avoid hand-over-hand
We believe that hand-over-hand doesn't teach him how to do an activity, only that something magic happens when the therapist touches him. He has to figure out for himself how to wield his body and that includes making mistakes.
4. Avoid pushing or "breaking" tone
Pushing against his muscle tone only increases the resistance and the effort he is expending. If Malachi is stuck in high tone, as sometimes happens with his legs, a good way to make him aware of this is actually to increase the tone by pushing with the muscle instead of against it. This increased pressure will make him suddenly aware that he is holding that muscle too tight and he will release it. "Breaking" his tone by pushing against it doesn't really teach him anything and is unsettling. We've all had the experience of someone pulling on us — our automatic protective response is to resist.
5. Encourage slowness
Things that are done quickly are done sloppily. To get a fully nuanced sense of what it is needed for an action to be done well, slowness is key. Avoid praising him for doing something fast, unless it's something he can do well. Speed comes with proficiency, not the other way around.
6. Assume competence 
Start as much as possible from the assumption that he has purposefully chosen to put his body in whatever position it's in. If he is slumped over in a chair, try to figure out what missing piece of information he needs to chose a more upright position. Or, simply be curious about why that position is desirable to him. Perhaps he can see better that way, or perhaps he is unaware that his hamstrings can help to stabilize him and he is tired of feeling like he's falling all the time.
He is not a "victim" of his cerebral palsy because CP is not a thing. It is only an absence of a thing. It is a lack of understanding of the rules of gravity, a lack of uniform sensations across his body and a muddled picture of the relationships of his body parts to each other. Designing activities that outline and deepen his understanding of these issues will allow him to learn more about his relationship to the world around him in a way that physically supporting him never will.
7. Go for internal motivations, rather than external
Capitalize on ways that Malachi is internally motivated. He will do a lot for numbers, letters and pretty much anything with a battery. Giving him external motivators — such as getting praise from you — is more likely to backfire.
8. Behavior and emotions matter
Since it's a brain disorder, psychological components are just as important as physical ones. He needs to feel empowered and successful, not controlled or inferior. Also, crying is like spasticity for him — instead of moving, he cries. Instead of responding to requests to move, he cries. It's important to help him move through emotional states just as much as through physical positions. 

As Malachi's full-time caregiver for the past three years, I know firsthand how difficult some of these rules are to put into practice and how sometimes other concerns trump them. We do not expect rigid compliance! We only ask that you be open to these ideas and how they can be incorporated into your interactions with Malachi. Again, if you have any questions at all, please don't hesitate to ask.
For more information about our approach, you are invited to read the amazing Kids Beyond Limits by Anat Baniel , "Your Self-Confident Baby" by Magda Gerber and "Parenting with Love & Logic" by Cline & Fay.
Thank you so much for your time!



What about you? Have you ever had to talk to your therapists about a differing viewpoint on your child's treatment? How did you handle it? I'd love to hear from you in the comments!



Feel free to share this post using the icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Need a baby shower gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Thursday, May 23, 2013

Why Your Toddler Thinks About Her Body Much Differently Than You Do



It was Mother's Day and I was getting a massage — my first shiatsu massage. I still have no idea what the shiatsu technique is all about, but in talking to the masseuse she used the term "core awareness" and it stuck in my head as a sort of meditative chant for the rest of the session.

Core awareness. Core awareness. Core awareness. 

As adults, we think primarily of our extremities. We think of walking as "putting one foot in front of the other." Or we think of doing the dishes as something that is done with our hands and fingers. Or we think of talking as something that is done with our mouths. The reality is that our entire bodies are involved in each of these activities, most importantly our core — the spine that allows us to balance, bend, reach and gesticulate.

One thing I love about Malachi's form of therapy, ABM, is that it made me see for the first time how much our bodies are a part of our whole being. For most of my life, my body has seemed little more than a means of conveyance for my eyes and my fingers. I very rarely gave a thought to my posture and never to my "muscle tone" — a huge buzzword in the special needs community.

But muscle tone is visibly different in different types of people. Actors use this reality all the time to portray different types of people — from the rigid drill sergeant to the fluid dancer. How our brains have organized our bodies has a very real effect on the person we are because — as may come as much of a surprise to you as it was to me — we are our bodies. Your body is a physical manifestation of the YOU inside your head and has as much to do with your personality as your thoughts and dreams.

Core awareness. Core awareness. Core awareness. 

This tendency of adults to think of our extremities is reflected in all sorts of ways in how we talk to our children and what we give them words for. I've read probably a dozen baby books about the human body and only one of them mentions the back once. The pelvis, the spine, the neck, the sternum, the ribs and the abdomen are — just percentage-wise — a massive part of the human body and particularly the disproportioned body of a child. The vast majority of children, typically developing or not, master their spines long before they figure out their fingers. Yet, we have songs about ten little piggies and pat-a-cake and even "Dem Bones" that skip entirely over our core despite the vast number of powerful muscles and vital skeletal structures there.

Core awareness. Core awareness. Core awareness. 

It may sound like I am condemning adults for thinking this way. I am not. Expansion and contraction is a pattern repeated everywhere in nature, from the build up and erosion of mountains to the growth and decay of a cell. It is natural for adults, who are at the peak of their expansion, to focus on the very limits of their being.

However, this is not the child's perspective. I have spent hours watching both my children experiment with wiggles of their pelvises or twisting of their torsos. Rolling around on the floor with them, I have rediscovered the physical experience of childhood — banging on the floor with our powerful back and thigh muscles, the feet a mere afterthought, or arching our backs so that our heads pop up, the hands against the floor steadying us rather than providing the bulk of our support.

The child who walks with a big, soft tummy and wide legs is much more aware of her core and its ability to propel her through space than the adult with a rigid spine and an aching lumbar. We could take a lesson from her, rather than the other way around.


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