Thursday, February 20, 2014

Through the Looking Glass

Every now and again I will look at Kingsley and instead of seeing my charming, lovely little boy, I will see someone else. I'll see his diagnoses. I will see how 'society' sees him. I will see both the Kid with Spina Bifida and the Spina Bifida Kid. I'll see his future surgeries, his equipment, his therapy and procedures, his struggles and his challenges. I'll see pity and sympathy.

I won't see Kingsley at all.

It doesn't happen often, it really doesn't. I don't have time to dwell on these things, I don't have the energy. I know there is no point in wishing things were different, no point wondering what could've been done differently. I know. 

But every now and then, whether it's something I've read or something someone has said or in the way someone looks at him, I will suddenly see Kingsley as someone who doesn't know Kingsley. And it crushes me. 

Sunday, February 2, 2014

Schmanniversary

It was Groundhog Day for about 19 hours before I realized that Groundhog Day was an anniversary for Kingsley. It's been three years since his tethered cord surgery (surgery #4 for him). I probably wouldn't have remembered at all except that when I told King we had to go to the doctor tomorrow he said he didn't want to have another surgery.

It happened last week also. And the whole week after his birthday. It's not that I forgot that these dates were big deals in Kingsley's life once, but just that I didn't remember. I didn't remember the anniversary of the first day I held him. The day he got his shunt (surgery #2 - I remembered the next day). The day he moved out of the PCCU. The day Jeff first held him. The day we brought him home.

For his first three birthdays, the events were burned into my head. There were a few days leading up to his birth, then the eleven days afterward, I would relive the moments in my head as the anniversaries rolled by. I remember the dates of his surgeries. The anniversaries of the days he came home, every time. I wondered if I would always remember them... I guess not.

His first year seems a long time ago now. Life rolls on. Things just get better. :)

Saturday, February 1, 2014

School

It is February and I have a four year-old, which in these parts mean one thing: SCHOOL. I know it's different across the country and everywhere else, but here our kids start Junior Kindergarten (JK) September of the year they turn 4, which means it is now time to register my boy. It's optional, I can wait until Senior Kindergarten (SK) or even grade one, I think. But I don't want to, he's ready for this.

Step One is registration. This happens right now. It involves contacting the school for a registration package and tour of the school, which we didn't need because the girls go to the school and I've been there enough. If your child is like most children, you drop off the paperwork and that's the end of it until the orientation stuff happens later in the year. If you're child is like Kingsley, you have to casually mention that to the school secretary. It's hard to be casual. We get to fill out all of the paperwork and then move on to step two.

Step Two is a meeting with the principal. The school secretary is going to call us back with a time. I'm told this is more of a casual meeting, just to feel things out and understand who Kingsley is.

Step Three is a big meeting with all of Kingsley's people and all of the school's people. We discuss what he will need to be successful in school and then how that will all be put in place, so I'm told.

I am not all that concerned at this point. Kingsley's needs are pretty straightforward:
* he needs a barrier-free environment, which the school is as far as I can tell
* he needs help with his bathroom business and medicine during lunch hour
* he needs someone to transfer him from his wheels to the floor or to a chair and then back whenever he wants
* he needs a chair at table height that is adapted somehow so that he can sit stably to do seat work and eat comfortably
* he needs someone to help him with his outdoor clothes, especially in winter and possibly help him navigate through recess
* as of now, he needs someone to make sure he eats, drinks, and doesn't choke or puke; this could change if he just decides eating is cool

The school should be able to figure all of that out. We are hoping that there will be an EA (educational assistant) in the room to help with the transfers and transitions to/from outside and hopefully with snacks/lunch and recess. I have no idea how the bathroom/medicine stuff works, but it will be figured out. Kingsely's current PT will help get the chair ready by September.

I have homework to do in the meantime. First, I have to figure out how to answer all of this paperwork. There are so many questions that don't have simple answers. Second, I have to make one of those All About Me books for Kingsley - an easy-to-read book discussing Kingsley's strengths, interests, diagnosis, needs, and whatever else I think his school should know about him. I have seen fabulous ones that are super creative. I am not creative. This will take some figuring out.


In the meantime, we are still in the depths of winter and up to our eyeballs in snow. It warmed up enough that I was able to take Kingsley out to play in the snow today, which he loves.


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