Thursday, December 18, 2014

So I Inhale

There are seasons on this parenting journey when the weight of what I do not know threatens to take me down.

When self-doubt and guilt link up, team up, gang up and have me barely able to breathe.

Have I done enough? I don't know.
Could I have done more? I don't know.
Should I have done differently? I don't know.

What if I had? I don't know.

Have we made the right choice about medication?
Have we made the right choice about therapy?
Have we made the right choice about school, about food, about friends, about going to the doctor or not going to the doctor, about discipline, about communication, about interactions and opportunities, about alternative treatments and second opinions.

Have we? Have we? Have we? I don't know.

And I'm going down.

The sliding doors of life are piling up on top of my chest and I'm struggling to catch my breath.
This season cannot last because I cannot last in this season.
It's me or the doubt - something has to give.

So in a desperate attempt to breathe again, I throw my last bit of strength into lifting the burden of what I do not know and I inhale what I know.

I inhale I love her.
I inhale I have done my best.
I inhale I am enough.
I inhale I cannot know the lives of what I did not choose. I can only know the life of my choices.
I inhale harder does not mean I chose wrong.
I inhale better does not equal easier.
I inhale grace for mistakes.
I inhale we will be okay.
I inhale we are okay.

I inhale. And I breathe again.

Tuesday, November 18, 2014

The Slippery Slope of "No Restorative Potential"

I find myself in an ongoing fight with Kaiser Permanente over their repeated use of the label "No Restorative Potential" in describing my seven year old daughter.

After calling their attention to this issue back in January in an Open Letter, they acknowledged that this was indeed very bad practice, they profusely apologized, feigned disgust and assured me they were making immediate changes to their language.  Eleven months later I received another denial letter, this time denying physical therapy and using the exact same language in justifying their denial: "No Restorative Potential."

I laid in bed last night unable to sleep - my heart racing with adrenaline, my stomach churning with distress.  Another fight, another battle - am I up for this? Do I let this one go? How much does this one really matter?

My conclusion - THIS MATTERS - A LOT!!!
And not just for Julia. This issue is bigger than Julia and her therapy.   This is about insurance companies deciding who is worthy and who is not.
This is about the way we value or devalue human life.
As humans then, THIS MATTERS TO ALL OF US!

Here is why:

In January occupational therapy was denied due to No Restorative Potential.
In November physical therapy was denied due to No Restorative Potential.

What comes next? Who is to say this stops with therapy?

When does it become:
The medication your doctor prescribed has been denied due to No Restorative Potential.
The tests your doctor ordered have been denied due to No Restorative Potential.
The appointment you booked has been denied due to No Restorative Potential.
The ER Admission you need has been denied due to No Restorative Potential.

How soon until these are the letters arriving in our mailbox?  How soon until No Restorative Potential means "not worthy of any of our resources?"

If Kaiser Permanente is so brazen to use this terminology in a written letter to us, how on earth do they categorize Julia behind the scenes?

"High cost, low return, resource suck?"
"The first to be cut off."
"Not worthy."
"Less than."

It's a slippery slope my friends.

And lest you read this with sympathy for our family but in the back of your mind are reassuring yourselves with thoughts like "well this is a child with special needs so this couldn't happen to me or to our family..." I have to ask you: REALLY?  How do you know? How do you know you are exempt from this slippery slope? Right now this is happening to kids on the more "severe" side of special needs, but what stops this from moving a little more towards "typical" and a little more towards "typical" and a little more towards "typical?"   Who is deciding on the criteria? I'm not, are you?

This label and these decisions from Kaiser were not based on Julia's current progress. Many of our dear friends who know Julia have cried out "Well they don't know her, they haven't seen all that she can do!" You are right - they don't know her, they don't need to know her. This is based on her diagnosis. A diagnosis from birth that I guess gives them permission to funnel her into the "No Restorative Potential" category. Kaiser hasn't done a recent evaluation to make this determination. No, her diagnosis is enough.  (Please note: I don't think this decision SHOULD be about performance, no one should have to audition for services - I'm just pointing out that they are basing it on a diagnosis and nothing else - which is also not okay.  The decision should be based on the fact that she is a human and she needs these services. Period.)

Do you know anyone with any diagnosis - aren't they more than that diagnosis?
Do you or someone you love have a diagnosis on your medical record which you would not want your worth based on?
Wouldn't you be outraged if decisions were made about the care of your loved one based solely on the existence of that diagnosis showing up on their medical record?
What if something you or your child or your loved one is being treated for now is suddenly deemed to make you "non-restorative" by the insurance powers at be.
Where does that leave you then?  In Julia's category.

"This doesn't affect me" or "this won't happen to me," are two of the most dangerous lies we can believe as a society. It is happening to another human being right now - if we are a village then it is also affecting you and happening to you.

Insurance companies are assigning varying levels of value to human beings and withholding resources from them based on those values. That is NOT OKAY!
Where is equality?  Where is co-existence?

"You don't measure up, you don't get the resources."

It's a slippery slope, it matters deeply, and we should all be concerned!

Thursday, November 13, 2014

Not Salvageable

This past summer I did something I've never done before - I was a participant in group therapy.  As a therapist I have developed groups and led groups - but hypocritically I had never actually been IN a group.  So that's what I did. I spent twelve consecutive Monday evenings for two hours with a group of four people and a leader - and I worked on some stuff.

One of the assignments we were given to work on between sessions was to write about a story from our childhood that brought us pain and that we believe is still in some way negatively impacting us.

I wrote about a time in fourth grade when:

I got off the bus at my bus stop, turned to wave goodbye and a boy I liked said to me through the window "You are fat. You are ugly."  My smile and wave dropped and I turned away quickly, trying to pretend I hadn't seen it. But I had seen it. I had felt it. It happened. 

I also wrote:

The way I think this story negatively impacts me still today is in my distrust that people actually like me. I think I hold back and cautiously wait to find out how they really feel.

So that is what I had written for my assignment when I returned to group therapy the following Monday.

"Your assignment tonight," our leader explained, "is to repeatedly read your story out loud to the rest of us for five minutes. Just keep reading it."

Yikes - my story was kind of short - I should have added some context and descriptor words...this is going to be awkward.

But I did it. I read my painful childhood story out loud to my group for five minutes.  The first time through emotion caught in my throat and I heard little gasps from my supportive group members. The second time through the emotion was still there but less overt, no choking up.
By the tenth time reading this story I was over it!!! My painful childhood story was getting a little old! We get it already, he called you fat, it made you sad - let's move on!!!!!

When asked to describe what the process of reading my story out loud to the group was like I told them how repeating it over and over again caused it to lose it's power. I still felt sad for my fourth grade self, but the emotions were less complex than before. It didn't feel like it had as much control over me as it previously did, back when it was privately stored in my brain just for me to feel and fester over.

"We sure do like our stories," was our leaders response and I had a vision of Gollum hunched over The Ring, stroking it and calling it "My Precious." Yes, we sure do like our stories, even, and maybe especially our most painful, our most precious.

"Final part of the assignment," our group leader said, "rewrite the last part and rather than telling us the negative impact, tell us how this story has positively impacted you. You are who you are today because of your experiences, so who is to say that the positives about you right now don't come from your painful stories?  So how has this story positively shaped the person you have become?"

Whoa...wait a minute.  I now have to be thankful for being called fat and ugly??? What the heck?  I knew this was a mistake, I should have just kept leading groups. I don't want to do the hard work of being a participant. I DON'T WANT to be thankful for this story. I want to be hurt and damaged and bitter - maybe at best somewhat indifferent, but thankful - no thanks.

Reluctantly, and because I am a pleaser, I did the final part of the assignment.  I looked for something positive from my fat and ugly story - something to be thankful for.  And once I found it, I actually really believed it.

I guess this experience may have had a part  in shaping me to be sensitive towards others, to be more aware of the power of words and our need for encouragement from each other. I think of myself as an encourager, so that may be the good outcome from this experience, the part I can be thankful for.

Ahh,sweet. That felt kind of nice.  I think that was good for me. I feel - better!

But what does this have to do with anything really?  Why am I writing about this? Laurie resolves some childhood insecurities about being chubby and comes out thankful on the other side. Big deal.

The thing is I couldn't stop thinking about this exercise. Out of twelve weeks of therapy, this was the part that had the biggest impact on me. Especially what the leader had said about our stories, "We sure do love our stories."

Oh man, we totally do, I totally do. And I have some good ones. Being the mom of a child with special needs you rack up painful stories quickly. You don't have to go looking for them, or add exaggerations to the real thing, they are everywhere and they are bad!

Some of these stories I keep to myself, stroking them like Gollum with the Precious, giving bitterness permission to fester with every retelling in my head.  Other stories I whip out in situations when I want a reaction from others of shock or sympathy or rage in order to give my self-righteousness a justification to stick around. Wow, I sure do like my stories.

But, I wondered;
1. Is this healthy for me?  
Answer: Probably not.

2. Are there any stories I need to take a second look at, like my fat and ugly fourth grade story, and instead of letting it fester with negativity I should maybe try to find the blessing?
Answer: Yes, probably several - but for sure there is one. One obvious one, the big one. My Precious.

I was 39 weeks pregnant with Julia. Scheduled to be induced on Friday morning.  I went in to see my doctor on Wednesday for a quick check to make sure we were on schedule. It was the only appointment of my entire pregnancy I went to alone.  And the doctor said to me, "She may not be salvageable."  

Not SALVAGEABLE???? What in the world? What are you talking about? She's not a Geo Metro. She's a baby, my baby. My baby I am going to give birth to on Friday, and hold and love and adore. How can you say she may not be salvageable. No one has said anything like that to us up until now. Who uses this awful word???

I have held a grudge against this doctor for seven years for saying this to me. He frightened me in that office all alone. He made an already scary situation so much scarier. His words caused panic for all of us that we didn't need to be feeling at the time.

And I have allowed myself to be bitter over these five words.  Every birthday we've celebrated I've thought of him, "Ha, take that!"  Every big milestone we've hit I've wanted to send him a card with a picture saying "How's that for not salvageable?"

Oh, how we love our stories.

Okay, back to the assignment. Find the good. Find the good. Find the good in "not salvageable."

Oh my gosh, It is right there! It is so obvious and I am such a hypocrite.

The one consistent message I have had about life with Julia, (beyond that she is the best thing that ever happened to us and the joy of our lives), is that our journey as her parents has been easier than it might have been because we were told to expect to lose her.(Ding, ding, ding, ding, ding!)  As a result of that warning
we have measured every moment with her as a gift, a gift we weren't sure we would receive. We've never viewed anything about Julia as a deficit, everything has been a glorious, glorious gain!

For seven years I have had these two parallel stories in my head: one about how an awful, insensitive doctor told us Julia might not be salvageable, the other about how our lives with Julia have been better because we dropped all expectations and simply celebrated the miracle of her being here. But I had never put the two together or recognized how the first contributed to the second being possible.

Julia Anne, age 7, love of my life
This story has now lost its' negative power. The bitterness has evaporated. I can honestly say now that I am thankful for it. Thankful for what in the moment was painful but led to a greater and more powerful gift. This story is what has been salvaged.

My doctor, in saying those five awful words to me blessed me.
In preparing me to lose everything, he actually set me up to be thankful for everything.

Thank you, doctor. (Please stop using the word salvageable when referring to human beings, but thank you.)

Tuesday, September 30, 2014

Are You Gonna Have More?

Are you gonna have more?

It's one of those obvious, elephant in the room type questions. Sitting there, begging to be asked.

Kind of like when you want to ask your 30-something single friend if she's met anyone promising. Or how you want to ask a childless couple when they are going to start having kids.
We are curious beings and certain situations beg certain questions... And I realize as Julia gets older that we have become one of those situations begging one of those questions.

Do you have kids?
    Yes, we have a daughter!
Oh, how old is she?
    She is seven.
Oh, seven?!?!  So what's the deal, are you gonna have more?

Are we gonna have more?

The easy answer would be "Oh, I'm not sure," or "Who knows what the future holds," or "Nope, we are done."

But the real answer is more complicated.
The real answer is that we do have more. Or we did have more... I don't know how to say it.

We have, or we had, two more.  Two more babies who would now be five and two.

Seven. Five. And two.

They were girls. Or they are girls... I don't know how to say it.

Joy and Pearl.  Julia's little sisters.

I think they would be blondies like their big sister - strawberry blonde with blue eyes. And I sometimes imagine the three of them lined up next to each other in the back seat of our car on our way to somewhere fun. Maybe Mimi's house.  Oh what a sight that would be. I wouldn't be able to look in the rear view mirror for long, my eyes wouldn't be able to take it.

Joy and Pearl.

Sometimes I just want to say their names.

Joy and Pearl.

Who would probably be so funny like their big sister. Three girls with the best laughs in the world. With curly hair like mommy and long legs like daddy.  And the three of them together would run us ragged in the best possible run ragged kind of way.  And we would look at them and laugh and say, "Oh you three!!!"

And we would love their relationship and say things like "Sisters are the best!"
And I would marvel over them, over the three of them. And my heart would feel like bursting.
Like it does sometimes now.


We did have more. Or we do... I don't know how to say it.
They just aren't here. We had them only briefly. Almost as soon as we knew of them they were gone. But don't mistake brief for insignificant.
Their lives, though brief, were significant and meaningful. Just not lengthy. Not as long as we selfishly would wish. But we did have them. And we do still have them, we just have them differently...I don't know how to say it.

Not a day goes by I don't think of them. Wonder about them. Long for them.

Not a day goes by I don't wish my more were here. Right here. With us. To be seen and touched and held and known.

But after losing Pearl we wondered if our hearts could do it again. So we stopped.
Because the sight of still little bodies on the screen hurt so much. So we stopped.
And cried "no more."

Are you gonna have more?

Well... we did. Or, we do... I don't quite know how to say it.

Tuesday, September 23, 2014

We Don't Do Goals

Every new therapy or program starts with a therapist asking me this question:
"And what are your goals for her?"

And for seven years my response has been:
"None.  We don't do goals."

And then there is typically a pause as the therapist tries to figure out what to do with my response.

I can usually hear their wheels spinning:
No goals?  That's not how this works. Should I report these parents? I have to have goals! That's what I was taught in therapy school:first set goals.  How do I do my work without goals? How do I know I am effective without goals?  How do I show I am making progress without goals?  How do I write my progress notes? How do I do billing? How do I go home at night and feel good about myself if my clients didn't achieve my goals?

My answer to them is: I don't know. I guess you will have to figure that out on your own if you want to work with us - perhaps go to therapy and set yourself some goals?

But for us, we don't do goals for our daughter. Period.

I don't believe in setting artificial time frames on developmental milestones I'm not even sure she was created to accomplish. That seems totally unfair, a complete set up, why would I do that to her or us?

Here is just one example of why I feel this way:

Julia started walking at age 7.  That's right, read it again, age 7.  Awesome- right? Go Jules!

But most kids start walking around age one, and goals are based on what most kids do. Which means that we potentially could have had a goal in place for her to walk for SIX YEARS.

Which also means, had we done this, we would have had SIX YEARS of a FAILED goal.

But Julia didn't fail.  So what that really would mean is that we would have had six years of failing her by having the WRONG goal.  Or we would have started with that goal and then at some point given up on it (because if kids aren't walking at a certain age then they won't ever walk - right?). So either way we are creating a situation for ourselves where we have in some way failed or given up on her- why would we ever want to do that?

Julia wasn't meant to walk at age 1.
Julia wasn't meant to walk at age 2.
Julia wasn't meant to walk at age 3, or 4, or 5, or 6.

She walked at 7, right when she was supposed to.

And it had absolutely nothing to do with us having or not having a goal for her.
It had to do with her being ready to walk.

Goals seem artificial to me. How do we know she was made to do the things other kids end up doing - and why would we want that anyway? We want her to be her.  Why set up expectations that may not even be realistic for her when we could instead just enjoy her for who she is and what she is doing - right now, in this moment - without the worry of where we are going, what level of development she may achieve, and if at our next therapy review meeting we are going to have met or not met goals. Who cares!?!?

Is she loved? Is she cared for? Is she embraced for who she is? That's enough.

It's not that I don't get the point of goals in general. My entire professional career is based on goals. They can be helpful in many situations, but most of those situations are short term - they've got an end point.  Julia doesn't fall into a "short term" / "end point" category though. If we allowed it, she could be in therapy with goals in place to achieve the next thing for her entire life.

But the thing is, I don't want her life to be one long therapy session. I don't want her life to be measured in goal achievement. I want her life to be her life. And I want to cheer her on for every part of it, not wasting one second assessing why something someone else inaccurately thought should happen didn't. Nobody's got time for that!

Tuesday, September 9, 2014

Just say "Hi"

A sweet friend just sent me an article entitled 6 Things Parents of Kids with Special Needs Wish You Would Say and asked me if the article was accurate.

First of all, how much do I love her for reading the article in the first place and then asking my opinion - what a gem! I believe she was reading the article because she wants to ensure she is doing all she can to be a friendly, caring person to families like ours - and honestly if that is her intention or your intention then you are probably doing everything right already and anything I say is basically just preaching to the choir.

But since you asked dear friend, this is my response:

1. Is there something I can help you with?
Sure, this seems accurate.  It is a really nice question - it is something you might say to anyone who is struggling, not just a family with a special needs child, so I imagine that I would totally appreciate this question if I looked like I was struggling in some way with Julia. Especially when it comes to opening doors while maneuvering a wheelchair!  Chivalry of any kind is always welcome in my book! 
But more importantly what this question says to me is "I see you and I'm not scared of you." That's what I hear, that's what is truly meaningful.

2. How is he/she liking school?
As with any sort of list like this, the more specific the recommendation the less universal it will be. This is a pretty specific question and it assumes quite a bit. I don't like questions that assume.  For me this question means I now have to explain and possibly defend (to a stranger) why she isn't in school - which probably is not what I want to be doing while running errands and trying to maneuver a wheelchair through a non-handicap friendly doorway!  Just ask if you can help me! 
The spirit behind this suggestion is to ask something about the child's life rather than just about their diagnosis or "what's wrong with her?" (Yes, we have been asked this. Yes, it is very offensive.)  And so I do agree with the spirit behind this suggestion. This is a family and a child who exist in this world and have a life happening beyond replaying their child's diagnosis in their heads 24/7, so questions about life are probably more relevant to this family than questions about a diagnosis.  
I do think that specific questions, whether they be about school choices or diagnoses, are better suited in the context of a relationship than as a means of introduction.

3. Wow, you seem happy/curious, etc.
Hmmmm, I have mixed feelings about this one. I love the acknowledgement of the child, so YES to that part for sure! Please see her, please acknowledge her, please presume competency.
But leave out the WOW.
WOW, really?  
Why WOW? 
Is it a WOW if a typical child seems happy or curious? Why would my child looking happy produce a WOW response?  To me this indicates a belief that kids or adults with special needs aren't happy or curious - and that seeing this is a shocker.  
I may be overreacting to this (I have been known to overreact once or twice in my life), but this is one thing that does bug me just a little - the surprise reaction people have about us (Julia individually or us as a family) being happy.  
I don't quite get the shock some people have over us being out and about, loving and living life, rather than home crying over her diagnosis. It is so important to me that people know: She's not sad, and we aren't sad about her! 
(People overemphasize diagnoses by the way, yes she has one or two or seven or twelve, I'm not even sure how many she has - but no, we don't really think about them that much except when people ask "What's her diagnosis?").  
Anyway, I would really like it if it was not such a surprise that she is happy, that we are happy, that we like our child, that we aren't sad.  
So if you would like to comment on her seeming happy, I think "You seem like a happy girl," is much preferred to "Wow, you seem like a happy girl." 

4. Hi there!
Yes! Yes! This is indeed accurate! 
This is it, this is all you need! 
Just say hi. 
Please say hi. 
I cannot emphasize enough the power of this one tiny word to a family like ours.  
We get so many stares, so many dirty looks, so many confused faces when we are out in public (please see: Your Confused Face Is An Ugly Face). 
If even one tenth of those stares turned into a "Hi there!" our experience of the world would be dramatically different.  
It's usually me catching someone staring and saying loudly to them "HI!"  in an effort to snap them out of the staring coma they have fallen into while looking at Julia.  And I'm usually doing it passive aggressively at this point because what I really want to say is:
"STOP STARING!!!!!!!!!!!!!!"
But, if a person catches themselves (and I see this sometimes thankfully) and turns their stare into a smile - or better yet, turns their stare into a smile into a "Hi there!"  I am over the moon. 
Thank you new stranger friend, I appreciate your "Hi there!" so very much!  

5. Hi there!  
There is a reason this is on there twice. Please do this!

6. Do you need back-up?
I kind of wish the article had ended with a third "Hi there!" that is how strongly I feel about the power of "Hi there!" but I think this suggestion is also very important. 
This was suggested as a way to show support if you happened to notice someone else giving the family of the child with special needs a hard time.  And absolutely this would be welcomed by me.  It always feels good to have someone on your side when things are getting rough.  
So if we were on the receiving end of a someone giving us a hard time and a stranger noticed it and said something to me like "Do you need back up?"  I could imagine myself bursting into tears and wrapping my arms around them, holding on for dear life. And possibly later getting a tattoo of his or her name to memorialize the event - I mean seriously, this "do you need back-up" asking person would be my new hero.
It can be hard at times being out and about in a world you can't control, with people who hold negative prejudices and biases about the person you hold most dear.  I know that to survive and not get derailed on every outing I have to do a lot of blocking out, ignoring, excusing, and praying. I know it is up to me to keep it together, I know it. But oh man, to have a stranger (or a friend) see how hard I am trying and offer to be my back-up in a really tense moment - yes, I would be more than okay with that. 

Bottom line, no matter what you say or how you say it:
Kindness is always going to be welcomed. 
Kindness, even if the wording is clumsy, will be felt.
And kindness will always matter - a whole heck of a lot.

Friday, July 18, 2014

The Magic Life Ratio

Highly esteemed therapist, researcher, author and all around relationship guru John Gottman developed a predictor for relationship success which he calls the Magic Relationship Ratio.  He can predict if couples will stay together or not by measuring their ratio of positive interactions (or "good stuff") to negative interactions. If they can average a 5:1 positive to negative ratio then they are likely to last!

I took comfort in learning about this ratio back in grad school because if you will remember from my previous blog about my husband (Appreciating My Husbands P-ness), we were not the most compatible of couples - at least not on paper - and we fought quite a bit. But according to Gottman fighting isn't the problem, an out of whack ratio is the problem.  So couples who fight can be very happy as long as they have five times more positive interactions to balance it out. Phew!

5 good for every 1 bad. The Magic Relationship Ratio.

Recently I sat down at my computer to write what I realized after a few minutes was yet another rant about a negative interaction that had occurred while out in public with Julia - as I was working myself up over reliving my frustrating encounter with an ignorant person, I caught myself and wondered, "Why is this the story am I writing?  Why am I giving this interaction attention but not the other really awesome thing that happened today while we were out in public? Why does the one negative feel so much bigger than the one positive?"

The ratio.

Could Gottman's brilliant hypothesis about a successful and stable relationship also be applicable to life in general?

Is there perhaps a Magic Life Ratio?  And if so was mine out of whack?

Had the ratio of positives to negatives between myself and life slipped to below 5:1 without me recognizing it? Were the negatives piling on faster than my sweet little positives could manage?

My ratio needed some attention ASAP - but what does that mean? How can this help me rather than make me feel worse? What do I do now?

Well, to be clear - the ratio is not to make us feel like victims or justify acting like victims.  We should not sit back in relationships OR life and say to ourselves, "Well, three crummy things happened to me this morning so I guess my life stinks until 15 good things magically occur."  Ummm, no.   You may feel like that in certain moments (I know I have) but behaving in that way will not help your case.

It's not about being a victim of what happens to you. It's about being aware of this concept and this human need so you can be proactive.

Recognizing I was in a life ratio deficit actually empowered me to do something about it. I reached out to the people in my life who I knew would help get me back in balance. And it worked!  I needed positives, I generated positives, my ratio was restored and no one got punched. Success!

(By the way, positives don't have to come solely from other people - we can add to our positive column in a ton of different ways, what makes you feel better? Do that.)

So two things I guess about this whole Magic Life Ratio idea:

One, being aware of and proactive about our own ratio can help make life less painful.

And two, we are all contributing to someone else's ratio in one way or another.  We are either building up the positives or draining them down.

That makes us very powerful.
Everything we do matters.

How then, shall we contribute?

Thursday, June 12, 2014

Who Got the Deal?

In college, a friend at the time taught me an awful game called "Who Got the Deal" where you basically judge couples solely on appearance and decide who between them got the deal.

(Awful, I know! Feel free to scorn my 19 year old self, she deserves it.)

Anyway, we would sit in the plaza in between classes and judge people.

"He totally got the deal."
"Oh man, she got the deal, how'd she manage that?"
"Does she know she got the deal?"
"Does he know she got the deal?" and on, and on...

Sometimes we couldn't decide who got the deal and we considered those relationships a good match, they may even last! We also believed from the analysis of our research that the best possible relationship scenario is one in which both people think they got the deal.

"I'm so lucky to have you" + "I'm so lucky to have you" = Happy Couple  
Wood, L., et al. (1999, May 5)


There is a common compliment given to parents of kids with special needs that goes something like;
"I don't know how you do it."  "I could not do it." "God picked the right parents for Julia."  "God knew what he was doing when he made you her parents."  etc...

These are all meant well. The intent is to encourage and express admiration, I understand that - but they make me very uncomfortable and I know I am not the only special needs mom to feel this way.

They make us uncomfortable because what this type of compliment implies is that our child got the deal.
"Julia is so lucky to have you."  Julia got the deal.

We cannot just casually accept these compliments because nothing could feel further from the truth.

This little person came into my life and rocked my world - for the better. I was a little bit of an arrogant, ignorant, naive, judgmental (see story above), selfish, control freak before Julia.  And while I am still all of these flaws and more, I know I am getting better. And the turning point was Julia's arrival.
My best deal.

She changed everything.

My awareness increased, my compassion increased, my tolerance increased, my faith increased, my hope increased, my joy increased, my patience increased, my confidence increased, my humility increased and my judgement decreased - because of her.

God knew what he was doing FOR ME when he sent Julia to me.

If anyone is "lucky" it is me.

So just to be clear, and in case appearances suggest otherwise, in this relationship, in every single possible way, I SO GOT THE DEAL.

Friday, May 30, 2014

Rare Bird

Yesterday Jules and I took a walk over in the open space by our house.

We saw bunnies and prairie dogs and heard lots of birds chirping.  I'm not a bird person, but I think most of the birds we saw and heard were your normal, run of the mill black bird or small brown chirp, chirp, chirpy bird.

On our second lap we heard something different.  Not chirping but a coo. A soft gentle coo, coo. Not far from us just off the path was a small gray bird, close to the ground, about to land on a rock. It's wings were flapping like a humming bird but it was much bigger than a humming bird.When it settled on the rock I could see beautiful dark blue markings near it's wings, contrasting it's soft gray color. It continued it's soft cooing as we stopped to observe.  I'd never seen a bird like this before, it was different, it was beautiful!

"Julia, oh my goodness, this is a special bird! A very special bird. A rare bird.... Just like you! My little rare bird."

I wish this is how the world could see Julia and people like her. Special and unique and exquisite and rare.

Why is it we can see the beauty in other species: dogs, cats, birds, fish, bugs, plants - but not in our own?

Why is it that something rare and different among other species is considered exotic and valuable, but among our own is considered defective and wrong?

For other species we fight to protect and preserve the rare. But in our own we seem hell bent on killing them off. For many it is considered a positive thing to "catch" a difference early enough so that it can be "disposed" of.  And those we don't kill off in time, well then we spend the rest of their lives doing everything we can to force them into something closer to us, closer to your average chirp, chirp, chirpy "normal" bird.

My Rare Bird
Why?  Why can't a rare bird simply be a rare bird.

When people look at Julia with disgust (sadly it does happen), I want to say to them (well first I want to punch them, and then I want to say to them), "People, you have no idea what you are witnessing!  This is the rarest of the rare type of human.  Scientists believe there is only one like her in the whole world, possibly in all of history. You are among the lucky few in all mankind getting the chance to see such a rare specimen. Take her in. Watch how she moves and interacts, it's fascinating.  No, she won't make the same sounds as you do, but listen closely to her beautiful cooing, isn't that amazing."

There is so much to celebrate in the diversity of our species.

Why are we scared of the rare bird among us when we could be in awe?

Tuesday, April 22, 2014

Your Confused Face is an Ugly Face

This is a public service announcement: Your confused face is an ugly face.

Do me a favor.
Go stand in front of a mirror.
Now close your eyes and think of a time when something confused you. Or caught you off guard. Or threw you for a loop.
Channel that moment. Feel how your felt. Make the face you made in that moment.

Now open your eyes.

Yikes!  Not a pretty face right?  In fact kind of an ugly face.

How do I know this? No, it's not because I am spying on you through your mirror - I'll leave that to the government.

The reason I know this is because that is the face we see over and over and over again when we are out in public. A confused face that is in fact an ugly and unfriendly face.  So I'm on a mission to raise awareness that your confused face is an ugly face - and in doing so hopefully make the world a better place.

Imagine what it would be like walking through life if this was the face you saw every time you made eye contact with a stranger.

Disturbing right?

And then, as if that isn't bad enough, the person making their ugly face realizes they have been staring at you (or your child in our case) with their ugly face and they quickly attempt a recovery face - and it looks something like this:

Not much better. Actually maybe worse.

Honestly after seeing this face so many times, I want to just to go ahead and put a narrative to it for people. You might as well be saying with your blatant gawking ugly face: "My brain literally cannot comprehend what my eyes are seeing. A person who looks different or acts different???? What is this?  Where am I? Am I safe? This is so far beyond my realm of understanding my face has frozen from confusion and fear."

First of all - what year is this? Diversity has been a buzzword for more than a few decades now and I'm pretty sure wheelchairs have existed for longer than that - so these are not new things. If they are new to you, then you should consider getting out more.

Secondly, I realize I'm making an assumption here, but I feel that it is very likely that you who stare with such bewilderment at people who are different also have one of those fancy CO-EXIST bumper stickers on your bumper and are very proud of it. If that is true, and I know it may not be, but if it is true or you promote this coexist concept in some other way in your life, then maybe go meditate on the meaning of that concept you promote for awhile so that the next time you actually do bump in to diversity you don't freeze and become completely incapacitated by DIVERSITY.  Just a thought.

Third, for the sake of the children (okay, let's be honest, in our case it isn't even for the child, she doesn't see it thank God, in our case it's for me). For the sake of me, for parents like me and for the kids and adults who do see it and are sick of this being the face greeting us wherever we go, please work on your facial expressions!  You want to make a difference in the world, you want to make the world a kinder place? Master your face.

Sounds hard I know, but don't worry, I'm not going to give you that advice and leave you hanging. I am a helper! I want you to succeed.  And thanks to my seven years devotion to Tyra Bank's educational television program America's Next Top Model, I KNOW for a fact that it is indeed possible (with work) to master your facial expressions even when you feel something different on the inside! Thank you Tyra Banks for your contribution to the world.

So, with that good news in mind and a little help from Tyra, let's practice!
Next time you see something that confuses you:

It's not this.

It's this!
Try it!
It's hard, I know, but you can do it.

Let's try one more:
"I just saw something I wasn't expecting to see. What should I do with my face?"

It's not this.

Or this.
It's this!

Okay, got it? Great! I knew you could do it!  Now just practice this tutorial in front of the mirror for 3-4 hours a day and I promise you will be making the world a better place for families like ours!

Thus concludes this public service announcement.

Tuesday, April 15, 2014

Survival of the Cutest

Last week I posted a new video of Julia laughing on Facebook. I was quickly informed via a comment from a “friend” that she "must confess" she did not find Julia to be" quite as cute" in this latest posting...


The comment was odd to say the least. Who says that, really?  But nonetheless, the comment was made and for as weird as it was and for as much as comments like that probably just need to be ignored and chalked up to the strangeness that is social media –  I find myself having a hard time letting it go.  And not because of the reasons you might think.  Yes, the comment was rude. No, you actually are not required to confess thinking someone’s child isn't looking quite so cute lately – you actually can (and should) keep that to yourself. No, the real reason I’m having a hard time letting it go is because it tapped into something very real to me, something I think about and worry over often.

What happens to Julia when the world doesn’t think she is cute anymore?

Hear me out. When people think you are cute they treat you better.  Cute is a shield. And while Julia will always be the cutest thing on the planet to those of us who love her, I am realistic enough to know that as she gets older her looks (like all kids) will change. She will get bigger, she may become awkward, and she will not be viewed as cute by the strangers she encounters.

And how will she be treated then? That's my concern.

I know the answer a little because the change has already started. The last time we checked into the hospital the nurses clearly treated Julia differently than in previous visits. She’s getting bigger and older and so rather than hear comments about her being “so cute” which is what we have usually heard, (which then behaviorally in our experience leads to being treated with patience and kindness), the nurse trying to get Julia’s vitals labeled her as “difficult” and seemed annoyed by the challenge Julia was presenting to her.  I distinctly remember thinking to myself in that moment that this is just a glimpse of what we have to look forward to when doctors and nurses no longer see Julia as cute and little but instead see her as a difficult challenge.

The world is a kinder place for those it deems cute.

And so I worry that the world will become less kind to Julia when little and cute aren’t the first things to be seen. I wonder if people will take the time to get to know her if they don’t immediately like what they see.  In truth it’s already hard now. We get strange looks or no looks at all when we are out in public so much so that my mom recently made Julia a shirt that says “I’m not invisible!”  If she needs that kind of shirt now at age six, I wonder how much more invisible will she become when she is (God willing) an older child or young adult and not so cute?

My biggest fear around this topic is that people will become less patient with Julia and less accommodating of the extra needs she does have and will continue to have if they aren't at first charmed by what they see.  Sometimes I want to ask the moms of older kids with special needs about this. Did you notice a change? Was there an age when people’s reaction to your child shifted, when their patience lessened?  Have we unknowingly been living in the easiest of years – and the harder years are yet to come? 

I want to ask, but I haven’t - maybe I don’t really want the answer confirmed.

It’s a sad reflection on our culture that this fear exists - but to be honest I'm afraid of this happening because I am guilty of doing it myself.

When I was 22 years old I decided to sponsor a child through Compassion International because a letter came to our house and inside the letter was a photograph of Gracie, the cutest 4 year old I had ever seen. The letter asked me “will you sponsor Gracie?”  And because I could not resist her cuteness I said “yes!” Two weeks later my intake packet arrived with a picture of my newly sponsored child - Yvonne.

Yvonne???  Ummm, where is Gracie?

Yvonne was not Gracie. Yvonne was not 4, Yvonne was not little and Yvonne was not particularly cute. Yvonne was not why I signed up to help.  Cute little Gracie was.

The intake letter explained Gracie had already been chosen so I had been matched with Yvonne, a child also in great need of sponsorship for the very same reasons as Gracie. But I remember thinking “I don’t realllllllly want to do this anymore... I really kinda just wanted to sponsor Gracie because she was really cute.” 

And then I remember realizing, “Wow, I am a complete jerk.”  And I wondered "Am I alone in my terribleness or are other people as terrible and shallow as me and Compassion International knows this and also knows they must use pictures of kids like Gracie to get sponsors for kids like Yvonne?"  Terrible.

I can only hope for my sweet Julia’s sake that most of the human race is NOT like the 22 year old version of myself.

Please, please, please people, be better than me!

I can only hope that I am wrong in my worries and fears, and that most people don’t treat others differently based on their looks or their size (or their age or their abilities).

I can only hope that most people aren’t so shallow as to decide how much love, patience, help, kindness and grace another person deserves based on how pleasing their appearance is.

I can only hope that most people do not measure the worth of another in cuteness but in humanness.

I can only hope...but I do worry. 

Monday, March 17, 2014

She's Not Sad

Yesterday after our church service, Wes and I picked Julia up from Sunday school class, put her in her wheelchair and started down the long hallway back out to the common area.

As we passed the first grade classroom a little girl waiting in the hallway pointed at Julia and loudly said "Look at that girl in the wheelchair. That's SO SAD!"

Before my brain could register what to do, my legs took over and I walked straight up to that little girl, bent down to look her in the eye and said, "No, no, no she's not SAD!!!! She's happy! She's a very happy girl!"

Wes fabulously followed my lead by rolling Julia up behind me so the little girl could get a closer look. "This is Julia," he said, "did you see the cool wheels on her chair? They light up!"  The little girl looked at Julia's wheels as Wes spun Jules around and nodded hesitantly. By this time her parents were paying attention, probably wondering why strangers were harassing their daughter. "Oh, they do light up," her mom said, "how cool!"

I asked the little girl her name. I told her we were so happy to meet her and Julia was happy to meet her!  I also thanked her for noticing Julia and talking to us (that might not have exactly been her intention, but that was my reframe because I do appreciate when people see Julia and acknowledge her).  I ended with saying again, "We are so glad to meet you and tell you about our happy, happy girl. She is not sad at all!!!"

I'm not sure if I made a positive impact on the world with that intervention yesterday or scarred a small child for the rest of her life, I hope the former.  It was just one of those moments I couldn't let pass.  I spotted the little girl before she spoke, she was staring at Julia and I could tell she was going to say something, when she pointed her finger at Julia and said "look at that girl in the wheelchair" I just figured I would smile and wave, but when she added the "that's SO SAD" part I was completely taken aback. It's just not accurate. And I couldn't leave it uncorrected.

I don't in any way blame this little first grader for saying what she said - she clearly has been taught from someone in her life, maybe even with good intention - that being in a wheelchair is sad, or being different is sad and that pity is the right emotion to feel when you see someone like Julia.

But nothing could be farther from the truth.

Julia isn't sad. Julia doesn't make us sad. Nothing about our lives with Julia is sad. She is a joy!

We don't want her to be different. We don't wish for a different version of her. We want her, exactly as she is, wheelchair and all!

We celebrate Julia! And she celebrates life to the fullest! She embraces the moment like no one I know! She is joyful, she is silly, she is spunky, she is busy.  There is no room for sad in all that amazingness!!!

The message that people with special needs are sad has to be corrected, not only because it is wrong but because it perpetuates isolation and bias. When we think something is sad, we stay away. When we pity someone we are actually thinking of ourselves as better than that person. Pity and sadness are barriers to being curious, being interested, being involved and being changed.

Please don't pity Julia, ADMIRE HER!
And get to know her, you won't be sad you did!

Tuesday, February 18, 2014

Meet me in Holland

Emily Kingsley's poem Welcome to Holland is standard reading for any special needs parent. Upon diagnosis 58 people will immediately forward you this poem.

It's a beautiful poem describing what it is like when you find out your child has special needs by using the metaphor of planning a trip to Italy but landing in Holland. We grieve our plans for Italy while we learn to love the wonderful things about Holland.

I really do love this poem.
There is just one thing that doesn't work for me:
We still land in Italy.

Our itinerary has changed and our guidebooks are no longer relevant - but make no mistake we are still very much in Italy.

And in Italy we are surrounded by all the other tourists whose trip is still going as planned, and who still believe trips go as planned.

They see us but can't understand the shell shocked expression on our faces because hey, we all landed in Italy!   Salute!

Sometimes I wish I actually was in Holland with all the other displaced would-be Italian tourists like myself. Sometimes I think that would be easier. Easier than the lonely Holland bubble we now move through Italy within, bumping into one another once in awhile as we navigate Italian roads with our obsolete maps.

In Holland we would be together. All of us feeling lost, but lost together, so not alone.  Belonging now to each other in our new status of not belonging.

Our expressions of confusion and grief would be mirrored in the faces of our fellow refugees, along with astonishment and wonder as we each learn to find our footing and take in the unexpected landscape.

Sometimes we might still talk about Italy. We might once in awhile share what we had planned and say to each other "Oh that sounds nice..." but it would just be a memory of a plan - not reality playing out before us each and every day.
"Holland has tulips."

In Holland we would be the norm.

And Tulips and Rembrandt's wouldn't stand out for being different, they would just stand out for being beautiful.