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.