Thursday, January 17, 2013

With No Segue

Our new house is awesome. No, we do not yet live in it. Long, boring story, but hopefully very soon we will be moving. In the meantime, I torture myself by daydreaming about how amazing it will be to actually live there. It is a Dream Home in every sense of the word. ;)

The potty action started great, then as I should've anticipated, everything went out the door when the holidays hit. Bedtimes were all over the place, we were all sick, lots of grandparents needing to babysit... Anyway, as soon as our routine started up again, I dusted off the potty and we got back to it. It's so very strange to potty train when nearly every factor is in my control and he has none.

All in all, things are going well. Lots of clean times during the day, lots of potty action, but it's still a learning curve I'm trying to master. All in time.

Remember the pregnant Mom I met at the library? In this city, six degrees of separation is really only about two degrees, so I was able to find her! And of course, she blogs ;) Her beautiful daughter, Ava, was born on December 4th and she's doing very well. This little fighter and her family are amazing. You can follow her story here.

Kingsley turned three this week. It feels like his first year was really heavy and consuming and action packed, and the next two have been kind of chill and just a chance to settle in and be comfortable. He really does feel like a three year old though. He didn't feel much like a one year-old when he was one because of the absence of walking and talking or all of that physical growth stuff. He didn't feel much like a two year-old because of the lack of language and tantrums (aw, shucks!) and toilet training trials that happen then. But three feels like three. I think three is going to be a good year for him.

For those of you who keep track of these things, tomorrow will also be his three year shuntiversary! He's still rocking Billy the First, which is awesome.

We are officially  members of the YMCA. Kinger and I went in there last week and had our tour, signed the papers and got our cards. We went for a workout Monday and had a wee snag though. When I dropped him off, I was one of the first there and they asked if he could stand. No. Could he crawl? No. No biggie, just have him sit there on the play mats. When I picked him up, I realized I had put him in the baby room and he was surrounded by infants. Today, he hung out with the kids his age and I had to drag him out of there (not) kicking and screaming.

And whatever is a mama to do when her camera stinks and her photorific sister refuses to cross the country to update her ancient blog header? Well, obviously, I went back to Laura! So. Ridiculously. Cute. The restructuring is a work in progress. I still need to play around a bit. :)

Sunday, January 13, 2013

I'll love you forever...

The other night I was getting ready for bed when I heard Kingsley call my name from his bedroom. I went in and he looked up at me with his big, sleepy, blue eyes and smiled.

"Mommy. It's Mommy. Hi, Mommy."

I asked him if he wanted some snuggles and he nodded and reached out his hands, opening and closing his fingers like he was grabbing at something. I picked him up and sunk down into the glider.

It took only one brief moment to realize that this was the best decision ever. I felt the whole weight of his body lean in against mine and I was so surprised by it, by how big he was. I carry him all the time, up and down stairs, in and out of the van, from one chair to another, and we even snuggle in this glider all the time. Even though I do this fifty times a day, on that night I really, really felt him, all nearly-three-years-old of him.

Birthday's are such sap-inducers, aren't they? All I could think about as I held him and noted how his knees folded in my lap so that his chin could rest on my shoulder, was how careful I had to be holding him at first. How his newborn (and drug-swelling) chub and pudge fooled you into thinking he wasn't as delicate as he was, with that scar in his bum crack and the one behind his ear. How I would be so conscious of where my hands were, where the blanket rubbed, if his diaper had twisted, the angle of his head... I longed to be able to just grab him and breathe him in. Now I can and I love it.

Kingsley's baby days are numbered. They're ticking away so quickly! He's going to be THREE. We're working on potty training, I bought him a real bed, he talks, he wheels, he is so independent. Kingsley is not that fragile little baby that stole my heart.

I sat there, rocking and snuggling, for a long time that night. Then, like that (creepy) Robert Munsch book, I laid down next to my sleeping Rachel and snuggled up with her for a bit, then bed hopped to snuggle with Cordelia and marvel at how fast she was growing up... until she put her hand in my face and I took the hint and left them alone.

Friday, January 11, 2013

A Word About Emily...

This month Parents Magazine decided to put an adorable little 3.5 year old girl on their cover. This is not surprising or particularly newsworthy, except that the little girl has SB and she's standing there wearing AFO's and holding onto her gold walker. I'm sure this is not news to most of you ;) but I will force it down your throat a little more, because it's super awesome.

Emily is on the cover because she made a great cover model. There is no article about special needs or SB or anything relating to that aspect of Emily's life. She's featured on a page showing how to make cute Valentine's cards.

It's amazing. It's such a little thing, but it has touched so many of us.

Kingsley doesn't see a lot of kids on wheels. We know two boys, both a bit older than him, that use walkers, but the vast majority of people he sees on wheels are elderly or adults in power chairs. To see a little girl his age, wearing the same kind of braces he wears, using a walker on a magazine like any other kid... it's awesome. It's normalizing.

I was out getting groceries tonight and I wandered down the book/card/magazine aisle looking for things for Kingsley's birthday party when I remembered the magazine. I zipped down the aisle and there it was! I may have shoved a bunch of other magazines out of the way so nothing was overlapping with it. They should thank me, really. It'll sell out now. ;) At check out I was grinning ear to ear. I had to stop myself from accosting the check out woman with 101 reasons why it was the Best Magazine Cover Ever.

I showed the girls the cover when I got home. Cordelia smiled and then said she wanted to eat her necklace. Rachel said it was a pretty necklace, then paused. She looked at me with a little smile, looked back at the picture, looked at me... "She has a walker-thing." I confirmed that yes, she did have a walker. I pointed out that she also had the same orthotics that Kingsley wears. She said: "Ooooh... Her skirt is like a fairy skirt." Cordelia came back to peer over Rachel's shoulder at the cover again. I'm not sure if she was looking at the walker, the AFO's, or the skirt, but she nodded and that was the end of it. AFO's and wheels are everyday things for my family to see. Thanks to magazines like Parents, they can be normal for all families to see.

Thursday, January 10, 2013

I scared of bunnies

I remember learning at some point in my career that when you have an important meeting with a parent that you should write down the important points for them. Something about only remembering 10-30% of what is told to you (perhaps I should've written this information down, eh?). When we were in the meeting getting the SB diagnosis for Kingsley, I vividly recall yelling at myself to PAY ATTENTION! RETAIN MORE THAN 30% JILL! LISTEN!! It worked, I can remember that whole meeting.

I bring this up because we had our ophthalmologist follow up this week and it would've done me well to remember to focus and remember the information. Instead, I immediately forgot 75% of what was said.


Anyway, it went pretty well, overall. There were tests, playing with toys, labeling letters (he LOVES doing that!), watching Dora, playing pirate... everything was going great.

You know those toys that are kind of old fashioned and often featured in thriller movies (and Toy Story 3), like the monkey with the cymbals? They had a bunny at the other end of the room. She turned it on with a remote. If there's one thing Kingsley fears and loathes above all else, it is inanimate objects that become 'alive' without warning. To say he lost his mind would be an understatement.

Well, the rest of the appointment went in fast forward. There was a lot of prying of the eyes to get drops and lights in. There was a great deal of relaying history over screams. There was a vain attempt to get Kingsley's hands off of his ears. Then there was a very happy boy yelling: "BYE!! BYE!! See you yater!!" and wheeling like the devil was chasing him.

Over the screams of terror, I was able to hear the doctor (who was fabulous) tell me that Kingsley's vision and eyes were perfect. No need to come back. No need for glasses. No need for concern. Her theory was that the random illness he had in September was likely a virus that caused inflammation/swelling in his brain on some nerves that control his eyes [here's where that 75% of lost info would've made me sound smart]. When the virus went away, the swelling went down, the eyes returned to normal. Yay!

Kingsley clammed up when I tried to talk to him about the appointment. All he would say was: "I scared of bunnies." Poor guy.

Monday, January 7, 2013

A Resolution

I spoke with the General Manager at the YMCA this morning regarding my visit last week and what I had perceived as a message that Kingsley and his wheelchair were not all that welcome at the Child Minding program. As he said in his email, there was a terrible miscommunication. There building is completely accessible and welcoming to people of all abilities, as they state on their website. He told me about a few programs King can do while he's there, different ways he can participate, and of course that I can drop him off and go work out anytime. He sounded very sincere and welcoming.

I am immensely relieved. Part of me knew this had to be the answer, but... well, there's often a 'but', isn't there? I have replayed the conversation in my head over and over again over the past few days, thinking about how I had come to the conclusion that he wasn't welcome. I guess, if it was so obviously inclusive and accessible, the conversation should have gone like this:

Me: ... and the room is accessible, right?
YMCA: Yes, of course, our whole building is.

The end.

Instead of:

Me: ... and the room is accessible, right?
YMCA: [Any other response]

If the answer was so simply 'yes' then why did I get told everything except 'yes'?  I don't know, it seems more like a staff issue than anything else. It doesn't really matter since 'yes' is the actual answer. Kinger and I are going to go by sometime this week and have a tour and check out all of the places we can both hang out now that the girls are back in school and winter is making us stir-crazy.

Sunday, January 6, 2013

Dear Jill

"...there has been a terrible miscommunication."

Yes, I would agree.

I emailed the general manager of the Y after the incident on Friday - not the letter I posted here, but a more objective and shorter version. ;) Same message though and same question about whether or not Kingsley would be excluded from the child minding because of his wheelchair, since that was the message I felt like I had been given. I didn't really expect to hear back until Monday since it's the weekend, but he responded this morning.

We will talk tomorrow and clear things up, but I'm cautiously optimistic.

Friday, January 4, 2013


Dear YMCA,

I came into your new building today to get a family membership. It's a beautiful place, bright, airy, and so many things to do. I have brought my children here before to use the library and my girls come here swimming with their Grandma. It's a great place, from what I've seen.

I approached the desk and asked to speak to someone about starting a family membership. A man gave me a little slip of paper and explained all of the cost breakdowns, payment options, and payment schedules. There were large sheets of paper with all of the activities going on through the day, outlining all of the drop-in programs. I asked about the child minding, the hours it was opened, the age limits for the kids. Almost as a rhetorical question, I also asked if it was accessible.

This is where things went wrong. I had heard about these moments, I had worried about these moments. I have avidly avoided these moments for three years. My son uses a wheelchair. He can't walk, but he gets around on wheels just fine. I know that there will be moments in his life where this will cause a problem. We don't go to the indoor playgrounds. We don't go to a lot of parks. We haven't signed him up for the same preschool my older girls went to. I have waited, knowing that there is a lifetime of these moments ahead of us, and chosen instead to just avoid them for now. I will save my fight for when it really matters.

The problem, YMCA, was that I didn't know this was going to be one of those moments. You are the YMCA, after all. You are not an Workout Club, you are not a Fitness Place - places I have sheepishly avoided in another attempt to avoid this moment. Your whole mission is to be inclusive and accessible, to everyone. So, when I casually tossed out the question about whether your playroom was accessible I was not expecting the frozen look of uncertainty on your employees face. I did not expect that he would rush back to consult behind doors with a manager. I did not expect to be told: "It gets busy."

I should have had my game face on, but it seemed my armour was in the van out in the parking lot. Instead, I stood there with an equally frozen look of uncertainty as I listened to him tell me that there were drop in art programs I could do with my son, that they had an accessible bathroom, and that there was a wheelchair he could use to wheel into the pool (though, that ramp leads into the deep end and my son is, of course, not yet three, but I let that one slide). I was not interested in any of this information. I don't want a drop-in arts class for my son and I to do together, I want to work out on my own while he plays somewhere else. A couple of short hours each week where I can sweat, be by myself, and destress.

Because, YMCA, I have stress.

What is a caught-off-guard, stressed-out Mama to do when told that the drop-in playroom "gets busy"? I tried to squash the fragile parent and summon my inner warrior, but all that came out was: "I don't understand." He repeated: "It gets busy. And crowded." I said again, "Ok... but I don't understand."

I didn't and still don't understand what was being said to me. There are so many ways to interpret the message I was receiving, I wanted to make sure I wasn't jumping to conclusions. Is the room crowded in general, and so there is only room for tiny children to sneak past each other, to squeeze between one activity and another? "He's barely three," I said, "He's small. His chair is small." He shrugged and looked like he desperately wanted out of the conversation, "I don't know if the family membership will be good. Maybe use a guess pass instead. Then you'll see."

Was your employee trying to subtly tell me that the YMCA is not as inclusive as it was supposed to be? Or that they just didn't want my child clogging the room with something as uncouth as a wheelchair? Was he afraid my child wouldn't be able to participate?

He didn't ask any other questions. He didn't ask if my son was independent (he is), if he would need special support (he won't), or even if I wanted to see the playroom to decide for myself. Instead, your employee stepped back from the desk and averted his eyes. He repeated again that we should do a guest pass one day instead of getting a family membership.

I'm sorry for leaving so abruptly. I'm sorry for not clarifying exactly just what was being said and unsaid. The trouble is, it's been over three years since I was told that my son was not welcome.  It's been mumbled here and there since then, but this was the first time since then that I felt like it was being said to my face.

YMCA, I think something was lost in translation today. I don't know what message your employer had been told to pass on instead of the message that I received. I don't know if this conversation was supposed to be in my best interest or in yours. I still don't even know if your playroom is accessible. I will find out the answers. I will be more prepared and listen with my head instead of my tender, stitched-up heart. I will find out how to make this work for both of us. I will decide if this really is a battlefield or just something we need to talk about.

His Mom

P.S. Don't disappoint me twice. I will take you down.

P.P.S. Here's the outcome

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