Friday, July 12, 2013

Wheelchairs and steps are not a match made in heaven

Last summer vacation we enrolled our older daughter in a playground camp for a few weeks in the summer.  It was very unstructured and I realized early on it wasn't a great fit for my daughter so we knew we would look for a different program this summer.  What we wanted for this summer was something different, something that both girls could attend together because both expressed that desire.

Finding a camp that is a good fit for both of them can be a bit of a tall order considering my older daughter is typically developing and my younger daughter requires a one-on-one assistant.  We looked around and found a couple options that would work and settled on a week session at our church Vacation Bible School (VBS).  We picked this for several reasons, with the most important being Emma's most favorite place in the world is Church and we thought she would really love all the singing and activities at VBS.  We were right - she loved every minute of the week!  Even if she refused to participate in the crafts so she could just look at all the kids.  My girl is nothing if not an avid child watcher.

We signed the girls up and I mentioned on the form that I would attend VBS as Emma's +1 thinking that would be the bulk of the accommodations we would need.  I intended to call the coordinator of the program to see if there was anything else I should do so Emma could fully participate with the other children, but, unfortunately never actually got around to it.  Yes, she knows Emma and knows me and I didn't think it would be a problem but still thought it would be nice to reach out with a call.  She even called me prior to the start to discuss that the location has a lot of stairs and isn't easily wheelchair accessible.  Oops!  I had no idea our parish hall had a 2nd floor and we would use both the 1st and 2nd floors for VBS.

Unfortunately insurance appeals and IEPs are taking up all my free brain power lately and I completely forgot to return her call and that is not like me at all.  It wasn't my most shining moment, but when we showed up for the first day everyone was very excited that Emma could join in VBS and we figured out a way to make it work for this year.

But....I don't think my back would sign up for another year of VBS with the current set-up!  I mentioned that to Sister and told her that I think we'll sign up next year with a different denomination church up the road that has an elevator.  I know they are able to accommodate Emma because we talked to them at length about sending her to pre-school there.  She took this to heart and the next day a couple of people told me, including Sister, that she is looking at options for next year so Emma can attend again.  I offered to help figure it out but I think she has some concrete ideas in mind and just needs to speak with others to get approval.  I'm not sure what we will come up with but I'm happy to see that our Church community considers Emma an important part of our parish and is willing to take the initiative to look outside the box for ways to include her.  It definitely makes my back ache a bit less tonight as I think about it.

I am hopeful that next year at VBS will be even better than this year!

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Kristina loves drinking coffee, family time and documenting her life - not necessarily in that order.  She is the mother of two charming daughters and works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in 2010 and is an advocate for disability rights and inclusion education.  You can read more at her blog


  1. My back hurts just thinking about it, Kristina! So glad they are willing to change things so Emma can participate again next year! Too bad it can't get done in time for your back muscles this year, but what a great 'can do' attitude. Emma inspires the best in everyone who meets her!

  2. Heather, you are exactly right! She does inspire the best in everyone. Our little ones are changing the world one person at a time!

  3. I helped my 17yo daughter with CP (due to CMV too!) participate in my small church's VBS last summer. Brielle walks, but can't go down stairs independently and needs assistance with meals and toileting. She had a great time, especially with her BFF who came along, and everyone welcomed them despite them being older than others. Five days in a row for five hours a day with 50+ young children exhausted me. Never again. I'm just not equipped for that sort of activity. God bless you for doing it!

  4. God bless you for participating in the VBS with Brielle. I hope when Emma is 17yo I still have some energy left! Ours was 5 days, too. And I was with the kindergarten and pre-school group. Wow! If I could only bottle some of their energy because mine was tapped at the end of the day!

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