Monday, March 25, 2013

My Sons' Disabilities Mean I'll Never Be 'Just a Mom' (guest post)

A fellow mother of twins wrote this beautiful essay about how her sons' disabilities have altered the course of her life and her identity. As today, March 25, is the first National Cerebral Palsy Awareness Day (or Cerebral Palsy Pride Day, depending on how you look at it) we wanted to share it with you. 


My Sons' Disabilities Mean I'll Never Be 'Just a Mom'
by Melissa Waller Longshore

What does cerebral palsy mean to me? I've decided I could sum it up in one sentence and that would be: I am not just a mom.

I went to hang up pictures in the library for Exceptional Children's Week and I was stopped by someone who wanted to know if I worked for the school system. I said: No, I am just a mom. However, once those words left my lips, I realized how untrue they were. Since my boys have cerebral palsy, I will NEVER have the opportunity to be just a mom. I will always be MORE than a MOM.

I will be my boys' Physical Therapist. I will stretch and push their little bodies to the max, all while hoping that my efforts are not in vain.

I will be an Explorer searching through the vast horizon of possibilities, looking for answers to questions that have yet to arise.

I will be a Doctor that rivals the best with knowledge of most medical terminology and an understanding their applications.

I will be the Navigator of a schedule that has to be seen to be truly appreciated. Where every day is filled to the minute with something that needs to be done.

I will be an Advocate for quality medical care and more educational resources.

I will be a Warrior fighting against the word can't.

I will be an Athlete, pushing the chair and lifting the weight.

I will be a Caretaker, feeding meals and handling bodily needs.

I will be a Crusader for more compassion and acceptance.

I will be a Researcher of the untried and the alternative, in hopes that something discovered today will benefit all tomorrow.

I will be a Farmer, planting seeds of hope to help other parents with children like mine.

I will be a Nurse, administering medication and gauging the results.

I will be a Builder of a home to fit their needs.

I will be a Visionary of what will be and could be, not what is.
I will be a Teacher to others, making them aware of cerebral palsy and its effects.

I will be a Mountain Climber, motivating my children to stretch past their limitations and to climb to new heights.

I will be a Preacher telling all that one's faith... belief system... God... is powerful and able to get you through the most difficult and challenging aspects of your life.
I will be a Nurturer, comforting my children when they fall, need support or are hurt by the harsh reality of how they will function in this big world.

I will be a high-powered Negotiator at IEP meetings.

I will be a Money manager finding ways to make the dollar stretch and having a great understanding of insurance and government waivers.

I will be a Comedian, laughing when others would cry.

I will be a Thrill-Seeker, searching for ways to include adventure in our lives — while running on coffee and adrenaline, yet living life to the fullest despite any challenge.

I will be an Investor in the promises of tomorrow, while reaping the small rewards of today.

I will be a Conductor orchestrating the operations of my family.

I will be a Writer, writing about all of this.

Yes, I am the CEO of this and so much more.

So, you see, as a result of cerebral palsy, I guess I will always be more than a mom. I will not be better or worse than the typical mother. I will have the same virtues and shortcomings. Yes, I will be the same in so many ways as others — possessing the same hopes and dreams for my children — but undeniably different.

I guess I will be special too — just like my children.

There are times when I wish I could be "Just a Mom," too.

However, most days, I love being More Than a Mom because the rewards are great. I have gained greater insights about what is important in life and what is not. I appreciate the simple things. I see value in every milestone. I see the beauty in just being — not what one has or is capable of achieving.

I see the power of people. How someone so small (a child with cerebral palsy) can impact my world and so many others' worlds in a positive way. I feel I am not alone because there are many, many More Than a Moms just like me. Their children are not defined by their challenges. These are moms and children who choose to supersede their circumstances.

No, I don't work... I don't get paid. However, I have many jobs.  I guess that this is the only way I can articulate what cerebral palsy means to me.

It makes me More Than Just a Mom.

I hope you connected with this post no matter where on the parenting "spectrum" you are! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs. 

Tuesday, March 19, 2013

Dear Person Whose Job It Is To Call Me Back — You Suck.

Dear Person Whose Job It Is To Call Me Back,

You suck. You are really, really awful at your job.

I don't care if you are a scheduler for a therapist, or a doctor, or a social service program. It doesn't matter who you are, a key function of your job consists of making appointments and yet you're — staggeringly, mind-bogglingly — terrible at it.

I know I should be sympathetic to your plight. After all, since I've yet to meet a single competent scheduler among dozens of offices, there must be some Scheduling Guild secrets that I am not privy to. Perhaps basic calendar technology has yet to reach your office. Maybe your boss regularly uses your phone line to make 1-900 calls. Probably your desk is on the plains of the Serengeti where regular rhinoceros migrations make such calls impossible. I can see how that would be difficult.

But you know what? I don't care. I really freaking don't. Because I am quite certain that you haven't given the slightest thought to the amount of effort it takes me to call you. Allow me to enlighten you, since you are obviously not doing anything else right now.

The process starts when the thought that I need to call and make an appointment swirls to the forefront of a near-constant whirlwind of needs, obligations and decisions about how to approach my son's disability. Then I need to find the appropriate number, which is never the number on a website or the caller ID from the last time you called. (Of course not. That would be way too convenient. Thus breaking the Scheduling Guild code of conduct.) Then I need to carve out a time in my day that is during business hours yet not during times when my nearly napless children are awake and eager to use any excuse to scream at me.

Once I have met all of these requirements, I get your voice mail. Of course you are away from your desk at 10 a.m. on a Tuesday. That makes sense. The rhinos must be on the move. No matter, I will wait for you to call me back. You know, because that's your job. Somebody is paying you to do that, so clearly you will do it at your next available opportunity.

But here's the thing: You never freaking do.

A week goes by, maybe two, and I realize as I am trying to fall asleep that you never did call me back and now I have to start the process all over again. You get me every time. We've played this game dozens of times now and yet I still always assume that you will call me back because I left you a message. I must be legendary at your Scheduling Guild meetings. "Susan! You're never going to guess who called me!" "No, not her! Again? That's too outrageous. When will she learn?"

Never. The answer is never, Person Whose Job It Is To Call Me Back. I will never learn that you won't call me back because I find it incomprehensible.

I find it incomprehensible not because someone is paying you a decent living wage to do something as simple as picking up a phone and typing my name into your clinician's calendar. Not because could you be very easily replaced by modern calendar software that would allow me to make my own appointments 24 hours a day. Not even because you ought to know how difficult it is for me to find time to call you. No, Person Whose Job It Is To Call Me Back, the reason I find it so incomprehensible is this:

A little boy with scarred brain tissue needs some help. The help is most effective the soonest it can possibly be given — time that is measured in days, not weeks or months.

You are the gatekeeper to that help. And yet, through your laziness or incompetency you are denying him access. In some cases, you are literally sentencing him to more suffering.

So I guess what I'm really saying, Person Whose Job It Is To Call Me Back, is, unless you are currently being dragged away by stampeding rhinos, you really need to pick up the phone and call me. Like, right freaking now.


The Lady Who Will Never Learn

I hope you found this rant cathartic! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs. 

Wednesday, March 13, 2013

Why I Love My Cerebral Palsy,
a Q&A with Nick Ryan

On this journey with my son's disability, I've had the pleasure of getting to know Nick Ryan and his unusual perspective on cerebral palsy. Ryan is training to become a special needs teacher in Ohio. He experiences mild ataxic cerebral palsy and says he wouldn't change it even if he could.

When March came, he noted with annoyance all of the green Cerebral Palsy Awareness Month ribbons flooding his Facebook feed. I wondered if we could instead call March Cerebral Palsy Pride Month and thought this Q&A might be a good first step in challenging some assumptions people have about cerebral palsy.

Your Facebook profile photo is an "ICP" logo in the style of "INYC." What do youabout cerebral palsy?

I love CP because it is part of me and I love myself. And I love others who have it and CP is part of them, so I love it. Like a friend of mine, who is a mom of a little boy with CP, once said: “If you going to love someone who has CP, you have to love the CP itself.” CP plays a major part in shaping a person who has it. I would not be the same person without it. I also find great beauty in CP — the way a person with it walks, the way a child with it smiles, the strength and courage we all tend to have — it's just beautiful to me.

What are you most proud of about your CP?

I'm proud of my CP because it makes me part of the diversity of the human species. I feel it is important to have many different types of people on the earth. In my view, it is important to be proud of who you are and what you are. This is especially important among minorities. Take a look at African Americans or Latinos or GLBT people — they did they not make any real progress towards equal rights until they developed a sense of pride and community among themselves. I feel that is really missing among people with CP and that is really holding us back when it comes to gaining equal rights.

How has CP enriched your life?

It has allowed me have a different perspective on things. I have to work a little harder to get things, so I value them more. It has also given me a strong sense compassion and empathy. CP has allowed me to meet some great people. I love meeting other people with CP — listening to their stories, their experience — it really does something for me.

How do you experience CP? What does it feel like and what is your level of function?

I find describing the CP experience to be difficult because it is all I have ever known. It would be like if I asked a typical person what it is like to be typical, they would find it difficult to put it in words that I would understand because they really don't know what my life is like. CP is just life to me. If you want to look at it from the perspective of functionality, I am relatively high-functioning compared to others with CP. The area where I am most affected is my speech; I have the typical CP speech pattern. I am able to walk independently, my CP does affect my gait somewhat. I have issues with my fine motor skills and continence.

Are you against a cure for CP? Why?

Yes, I am against a cure. When people say they want to cure CP, to me it is like saying that you want to cure Judaism or cure people of being African American. It is the elimination of an entire group of people just because they are different from the so-called norm, a group of people that contributes to the richness and diversity of this world like all groups of people. Also, people underestimate the psychological impact a cure would have on a person with CP. You are changing a major part of who a person is. A person who would received this cure would have to create an entirely new identity.

What is your biggest pet peeve about the way society at large talks about CP?

What really drives me crazy is to hear CP talked about like it's this nasty, evil illness like AIDS or Cancer — something to be hated, something to fight. After almost 30 years of living with the condition, I can tell you it's nothing like that. This type of talk is not only untrue and annoying, it is dangerous. Children with CP hear this and feel like they are broken, that they have to do everything they can to overcome their CP. So they engage in an endless war against their own bodies that is both physically and psychological damaging. Their parents, pressured by the same societal view of CP, encourage this and in some cases force the child into this. The parent is made to feel that they are not being a good parent if they don't push their child to gain as much abilities as they can. The end result of this is an environment that is unhealthy for all involved.

How do you think you would react if you had a child diagnosed with CP?

You don't really know how you going to react to a situation like that until you're actually in the situation, but I don't think it would be a big deal to me, I've been around CP and other disabilities all my life — they are normal. Of course I would want to make sure that my child felt loved and accepted for who they are, whether they had CP or not. If my child had CP, getting them a way to communicate would be the top priority, whether it is through speech or an AAC (Augmentative and Alternative Communication) device. I would want most of his/her therapy to be play-based and child-directed. I would let the interest of my child guide what we do as far as therapy. I would make sure that he/she had what they needed to get the most out of life, whether that be a wheelchair, walker or whatever. Most of all I would want to be happy, happy about having CP, happy about what they are doing with their lives, just happy.

How do you think you would feel if you had a stroke or brain injury now and lost some of the function you currently have?

This is another question I can't give you a for-sure answer on. I'm sure there would be a period of adjustment while I would get use to my new situation and I'm sure I would feel sadness for my loss. But over time I think I would adjust to things and find a way to be happy. That just the type of person I am; it is in my nature to try to make the best of things.

What would you most like people to know about what it's like to live with CP?

That the quality of life of person with CP is more greatly impacted by the environment they are in. If you put a person with CP in an environment that is loving and accepting, that has proper accessibility and technology, they going to have a good life no matter what functioning level they are on. Instead of changing people with CP, we should be focusing on changing the environment.

I hope you found this post thought-provoking! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs. 

Sunday, March 10, 2013

The Paradox of Overwhelming Blessings in the Wake of Tragedy

There is a strange paradox in having something terrible happen to you. The paradox is that, as a direct result of the terrible thing, many wonderful things happen. I honestly can't quite sort it out.

I know, logically, that if someone offered me a mixed bag of good things and bad things, I would happily accept, taking out the bad things and leaving them there. Why should I carry around the bad things just because they happened to get mixed in? But an illogical part of me still clings to the badness of Malachi's diagnosis, the certainty I felt in the beginning that my life would be practically unbearable forever after.

And it's not just that, either. If his disability isn't sad and difficult, would the justification for receiving the good things from our community disappear?

And, oh God, the good things. When I think back on the past year, I'm simply staggered at the number of extreme kindnesses directed at us. So much so that I think, guiltily, well, it's not that bad, as if some sort of cosmic profit-loss table has tipped too much in our favor and any day now people will decide I'm running a racket and demand their stuff back.

People have come out of the woodwork offering us support. Friends, unknown relatives, complete strangers, enemies. It has been humbling and enriching in ways I could have never imagined. Somehow Malachi's diagnosis has made giving to our family possible in ways that it just simply wouldn't be if he were typical. I see friends with typical twins struggle with some of the same stressors and worries that we have and yet no one offers to pay their medical bills or buy airplane tickets or give free childcare. Many of those things we still would have needed had Malachi not had a brain bleed, but I doubt such a "normal" life would have inspired so many to give so generously.

I hope I'm not too out of line to suggest that these selfless acts have enriched our donors' lives in addition to our own. The sense of connection and empowerment they feel in fulfilling our needs was made easier by the extremity of Malachi's needs. If he didn't experience disability, neither we nor the donors would have experienced this font of love and generosity.

But then I remember that the majority of the money we've been handed has been towards his development, and I despair that it's all been for naught. Yes, he is verbal; yes, he is remarkably bright; yes, his fine motor skills have improved enormously; yes, he adores his therapy sessions; yes, his movements appear increasingly graceful and energetic; and yes, I attribute much of this to his many Anat Baniel Method lessons. But will he ever walk or — for Christ's sake — even SIT?? That is the question that burns in my mind and makes me doubt whether I have shepherded our community's resources wisely towards an unproven method of therapy.

To be sure, the process — both in receiving such generosity and learning so much about how the brain (and therefore, humanity) works — has been uplifting and joyous and beautiful. But the outcome is still so murky and it is that which keeps me up at night, wondering if this story will end in tragedy or triumph.

And yet.

I believe that what I am slowly, slowly learning is that life is the process. If the process is good, that's all there needs to be, because there is actually no such thing as an outcome. Only never-ending processes, on and on, until the end of time. The process that began with Malachi's diagnosis was a catastrophe but kept right on proceeding into blessings, and that, that is the story that really matters.

I hope you found this post thought-provoking! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs. 

Wednesday, March 06, 2013

Natural MiraLAX Alternatives for Constipation (especially for Children with Special Needs)


UPDATE 4/2/14: We have been managing constipation pretty well now for months with this supplement: MRM Cal-mag-zinc Liquid. We give 5 mg daily but experiment adding or subtracting milligrams until you reach a happy spot for your kid. Need more/different ideas? Tons below!

Dealing with constipation seems to be a perennial topic on forums and message boards for parents of kids with special needs. In responding to a recent query, I realized I've developed an arsenal of tips and tricks over the last two years. I continue to add to these on my page Tips I Wish I'd Known Sooner but thought this deserved its own post. Enjoy!

• We have mostly been able to manage it with diet changes:
- Prunes, Peaches, Pears, Papayas (juiced or pureed, remember The Four Ps!)
- Coconut milk (really should be called coconut cream, comes in a can like Thai Kitchen)
- Pumpkin (Make a dessert with pumpkin, coconut and sweetener, yum!)
- Chia Seeds, sprinkled on top of other foods (put in a pepper shaker and call them "sprinkles," kids love it!)
- Fewer carbs and dairy
- Probiotics powders (We use Primadophilus for Kids)
- I've also heard good things about FruitEze, a fruit paste, but haven't gotten around to ordering it yet.
- Colloidal Minerals, such as those used in the Preemie Growth Project, are giving lots of my friends' kids relief, but sadly Malachi has yet to have that reaction. UPDATE (6/5/13): We are now on Blue Ocean Minerals, which is remarkably effective as it contains magnesium along with the colloidal minerals. Use a very small dose and work up slowly or you will have the opposite problem!
- Lots of water and fluids. This looks like a fun idea for involving the child in monitoring his/her water intake, though I haven't tried it yet.

• If he's been straining for a day or two with no results, it's time to bring out the big guns.
- Glycerin suppositories are natural (most glycerin these days is a biodiesel byproduct) and mostly work by having something there to send a louder urge to the brain. Cut an adult one in half for little kids, even safe for babies, but ask your doc.
- Glycerin enemas — very fast relief! Available everywhere. I wouldn't use them all the time, but they sure work!
- Magnesium sulfate (aka Epsom salt) is also a good laxative that has the added benefit of improving the body's ability to absorb nutrients and easing muscle contractions — perfect for cerebral palsy! I tend to add epsom salt to Malachi's baths so this is sort of a regular thing for us. This can be TOO effective so be careful your child doesn't drink the bathwater and that you don't put too much in. We do about half a cup in a bathtub of three inches of water.

• There are also movements you can use, such as the Wind-Relieving Pose in yoga, and a technique we learned from an acupuncturist that involves pressure points that worked very well when Malachi was a baby, but less well now that he's older and the stomach muscles are stronger. He still thinks it's hilarious though and calls it "poop massage."

• Why shouldn't you just use MiraLAX or other petroleum-based laxatives? Glad you asked. (Spoiler alert: The FDA says they contain neurotoxins and block the body's ability to absorb nutrients. Yikes!)

Do you have any tips? Questions? Issues? I'd love to hear from you in the comments below!

I hope you found this post useful! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs. 


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