MAPS for Cole

Friday we particpated in a MAPS Personal Assessment for Cole at his school. One of his teachers is working on her masters and wanted to do the assessment for Cole. It's typically done when children are a bit older but she, very insightfully, thought it could be really beneficial to do one now. She and Cole planned the day. They invited friends he selected, family members and teachers, therapists, and even our principal, collectively, his Circle of Friends. The atmostphere was almost party-like with pizza and ice cream for all.

Prior to the event, Cole was asked to describe himself in terms of what he is: a son, friend, cousin, swimmer, bowler...Then we were all asked to share responses to several different questions: Who Cole is to us; what characteristics define Cole; what are our dreams for Cole; what are Cole's strengths; what are his needs, now & in the future. The responses were written out on big sheets of paper, one for each aspect and posted around the room. It was really amazing to hear what all of the different people had to share.

His teacher will then review and assess the responses and create a plan of action so to speak that will be used as a tool for mapping out Cole's future goals in school and in life. Most likely he will have another MAPS when he's a bit older, perhaps transitioning to middle school and we'll now have a wonderful baseline for next time. Plus it gives us an opportunity to start early in trying to help him reach every goal, wish and dream...It also occurs to me that the children who participated may not have fully understood the impact this will have but I suspect that in small ways their understanding, and appreciation of their dear friend Cole, has deepened, and that this will somehow translate into something special in their lives too.

Working Girl

Yes...that's me...a working girl! Three weeks in and fairly happy with the new gig. There's a ton of catch-up and a slight learning curve for me..In my former career I was the lead singer and now I'm the bass player or maybe lead guitar? I would pass on the work I'm now doing to someone else so while I am familiar with it on a strong level, I'm now having to become verse in the actual nuts & bolts of it...But I'm liking it and the days go by really quickly and the people I'm meeting are great and it's a relief to have a steady paycheck and most importantly, Cole is handling the changes he's had to make with grace.

He's now at school five days a week from 8:30 to 5:30...a long day for any child...Our home routine has streamlined and he's doing so well with everything which just makes it that much easier for me to not become a guilt ridden mom!

He's the top!!!

Juggling

I started a new job last week. The whole thing came up suddenly and then Friday night the offer came with a Monday start! Yikes...Of course, Dan left for two weeks in Berlin the same Monday...So, I accepted...figured out afterschool care for Cole and flew into crazy woman mode...I'm really good at that one! Naturally, Cole got sick midweek and I had to take a day off because I haven't figured out the sick day care plan...If Dan were home, he'd stay with him...The stress level rose and rose and then it all kind of evaporated...Everyone was understanding and Cole is getting better and he and I are on the road to developing a new evening routine...

The panic set in during the weekend before I started...I think that's how I operate...freak out over all of the what if's and then when the time comes for action, I'm actually pretty cool. Cole's defintely cool...He seems to effortlessly adapt to things once he's got a grasp of the who, what, where, when, why's...Oh, you're working ("want to see"...where I work...), and I get to stay at school late every day with my friends...(YAY!)...

The past ten days have flown by though...I haven't figured out how to juggle it all yet. I know it's possible because I have a great many friends who do it successfully and set a great example...I'm lucky too because I won't have juggle by myself...Dan'll be there catching things that fall and tossing them back up into the air...

The interesting thing I'm rediscovering is me...more to come on that one...

Scars

Tonight as I gave Cole his bath, I was feeling rather contemplative and as I washed and rinsed his little body, I took note of the various scars. He has lots of them. Many from his first few days when he struggled to stay alive and had tubing running circles around him. Desperate to have our hands on him in those early days, Dan and both learned to navigate the tubing and tape so that we could cradle him in our arms to comfort ourselves. We rose to the challenge of changing his diapers - not an easy feat when your child is wrapped in bondage! There are tiny little X's on the sides of his chest where chest tubes were inserted, and another little x on his neck where something entered, for medication, I think. Then there's a long slice down his stomach which was used to perform the surgery to initially insert his feeding tube so he could go home. He has two pairs of gashes on his legs and a pair of sort of knotted scars on his along his pelvis, all from an orthopedic surgery when he was four that lengthened his tendons and muscles to allow him more flexibility and to help prevent hip displacement, a common occurrence for people with cerebral palsy. He left the hospital following that surgery with a cut broom handle separating his casted legs at the ankles...very crude looking but I suppose it's effective as I've seen pictures of other kids who had the same surgery with the broom...The trouble with it was he didn't really fit through a door way with the broom...He, of course, took in all in stride and rode out the two weeks of casts like a champ...The last scar is one that I inflicted...and probably the one that haunts me the most...a little ding on his temple, right near his eye. I lost control of his wheelchair on a crazy sidewalk and the chair went over the curb and toppled before I could grab it. I remember it seeming like forever but it was mere seconds until I whipped the chair, Cole and all, back on it's wheels, unstrapped him, and had him in my arms...He didn't cry (I did), he just nestled into me as I struggled to stay calm. The only wound was a small scrape on his temple, by his eye. A little blood, but nothing serious. The scar makes it look like it was much more severe and reminds me daily of the day I hurt my baby...

Listening to myself ramble

Sometimes the one way conversations with Cole just leave me sad...I listen to myself ramble and wonder what he must think of me. Sometimes he seems to have no interest in conversation or communicating. I don't know if he simply needs some quiet or if he's being defiant, not responding to me or if he doesn't know how to respond to me. Other times, he's engaged and the chatter seems mutual.

While I would give my life for everything about him to be perfect, if one ability could miraculously be restored, I think I'd choose the ability to talk. There has never been a moment in Cole's life where I feel like I wasn't guessing what he wanted, felt, needed, or thought. There's no way to be 100 percent certain about it. I know I get it right a fair amount but I can't imagine how frustrating it must be for him to have the ability to think, feel and understand but to not be able to communicate exactly what it is you want. One day, as his skills with assistive technology become stronger and more adept, he'll come close...He'll never have the ability to readily articulate his thoughts or to, like his mother often does, ramble...

It breaks my heart...and I tire of my voice and ramblings...and I long to hear his voice...