Parenting, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: Bifocal

Bifocal Williams Syndrome Wednesday

Williams Syndrome Wednesday Bifocal BlogI’m struggling a little. I feel challenged by the need to be present in the moment and simply love and care for wee Obi and the need to learn and understand and be prepared for any and all possibilities for the future. I need bifocal glasses.

Today, for instance, I dropped off a cheque for the 0-2 infant development nursery school program we’re starting in September (one morning a week/parent and child/typical and special needs kids/developmental program including sensory play/various therapists participate throughout the year to assess and determine areas where further intervention may be beneficial/finally meeting other special needs parents/gives us an ‘in’ with a key provider of service for special needs kids) and at the same time, got on the waitlist for their preschool program.

This prompted the discussion about what we’re going to do for daycare when the time comes. This TIME, for my DH is coming sooner than later, as here in Canada, the first birthday normally marks the transition to care. He envisions her in some kind of mainstream daycare with extra services if necessary.

I, on the other hand, imagine this transition will happen closer to 2, in a part time setting, more likely than not in a program geared for kids with special needs to maximize early intervention and set her up to (hopefully) mainstream in school.

Of course, neither of us have any idea how any of this might play out. The hours I’ve spent thinking about my version of the plan are based on exactly NONE of the information necessary to actually make a decision. His version included a daycare we’re not on the list for (because we aren’t on ANY lists and in this city, no list means no spot). Of course, all of these hours are time not spent just enjoying her and the boy, cleaning the house, planning outings or even (in my case) working to support whatever childcare situation we end up in.

I find this to be the case with just about everything that will happen in the future. I cannot help but obsess about every little thing even though I know we can’t know how things will go until Obi gets older and we see where she sits on the Williams syndrome “spectrum”.

I am trying to focus more on the present and to be ‘here’ for her and the boy. It’s really challenging though. I suppose it’s all part of the shock that comes with any life altering diagnosis. The lives altered include so many more than the one who’s received it.

The idea that I need to focus on plan for a life that will continue long after I am gone is also mind blowing, and depressing and stressful and sad. Yet another reason to pull my focus back to the here and now.

Little Miss did well with her OT today. The therapist said there was progress! That she could see that we were working. That babes who don’t have parents who actively work on the skills don’t reap the benefits of the early intervention. And that there’s no telling just how large an impact this can have on her potential in the long run. Nearsight: Doing well. Keep up the good work.

Farsight: Potential, long run, improvements, what does that mean? Who will she be? Will she need daycare? Private School? A different public school district? Will she work? Find friendship? Love? Who will care for her when we’re gone…

Focus. On. The. Here. And. Now. Be. Mindful. Of. The. Future. But. Do. No. Get. Caught. Up. In. And. Endless. Loop. Of. What. If.


This is my new mantra.

Wish me luck.