January 11, 2013

ASSIST Community Design Center

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Bertrand is nearing 50lbs.  It's a growing challenge getting him in and out of the house, up and down stairs, and using the bathroom.  Safety is a huge issue.  I fell down the stairs carrying him when I was 6 months pregnant with Victoria, and Bertrand was just 40lbs then.  I am forever grateful that only I got hurt that time.

So, I was excited to get in contact with the folks over at ASSIST today. ASSIST Inc is a nonprofit Community Design Center founded in 1969. ASSIST provides architectural design, community planning and development assistance to nonprofit and community groups, and housing and accessibility design assistance to low income households or persons with disabilities.

We have an appointment in three weeks (on February 1st) for property inspection and measurement.  Then in approximately 2-3 weeks, an ASSIST representative will be back with architectural plans and cost estimates, so we can start saving and budgeting for the remodel.  They also have a list of contractors we can contact for any project we choose to undertake.

We're looking to improve the accessibility to the back of our home (think: ramps) and remodel our first floor bathroom so Bertrand can use it.  (It would be nice to give him a shower or bath and not almost break my back or knees in the process.)  Those new kitchen counters will just have to wait.

The first floor playroom is morphing into his big boy bedroom.

The last few months, my heart has been heavy with the dawning realization that Bertrand's bedroom would have to be moved downstairs.  It's silly, but decorating Bertrand's first bedroom was symbolic for me.  At the time he had a projected 18 more months to live, but by setting up his room I was signaling to everyone, especially myself, that he was here to stay.

It was a monument to my love for him, and to the boyhood I believe he deserves.

And a wholehearted acceptance of the vulnerability that by nature is required to love him.

I am sad that he'll no longer be in his beautiful room.  And I am sad that (despite video baby monitors) he will be on a different floor from the rest of the family at night.  I don't want him to ever feel different or less loved.  It hurts me that this is his reality.

But, I know Bertrand will be fine.  We'll find a way to make his new room wonderful.  And Victoria can sleep over as often as she wants--same goes for Penny, his best furry friend.  (And his Mama too.)  And I know he'll enjoy less-achey parents.  He'll be happy.  He always is.

*Sigh*  I guess even hearts can have growing pains.


  1. Oh how I understand this. It's like the little moments along the way can just punch us in the gut (like getting a disabled parking placard) and then there are some moments - like the realization that your "perfect home" or "sweet big boy room" are no longer the perfect ones for your family. We are in the process of trying to sell our home because the estimates to make it accessible were impractical ($100,000+ because we have so many stairs and narrow staircases and no real space on the first floor to make a bedroom - it is a split level) and my heart too is heavy. I was pregnant with Sam when we bought our house. The first time we walked in it, we knew it was "the one." The one we wanted to raise our children in. And, it hurts now to know that its not "the one" anymore. As B said, it went from a house he loved to one he hates because our girl is so limited in it (she's finally using her kidwalk to maneuver a bit, but she's stuck in one room in it because of the stairs). Hard, hard pills to swallow. Sending some love and comfort. And, yes, his new big boy room will be even better. One that he will love, and you will too, for a long time. xo

  2. This gave me chills. Just think, B can be more involved in choosing the design of his new room!

    1. You're absolutely right. :) He'll pick everything out and he'll love it!

  3. I'm sorry and glad and hopeful for you. My hope is that it will be affordable and make the home you have even more of a nurturing place for your family.

    This issue is something many of us will face as life goes on, most likely for a limited amount of time after an accident or surgery. I have a friend dealing with accessibility issues of her husband suffering from parkinsons. It is very tough. I am always astounded when I see how new houses today are designed with no thought to accessibility.

    In the early 90s I had a friend whose mother was a professor of geriatrics (I'm not certain of her actual field, I just know it had to do with geriatrics in some way.) Her mother designed and built a house for herself that was totally accessible so she could remain in it easily as she and her husband aged. That house was AWESOME! You didn't realize what made it so nice - the zero thresholds on the front and back door, the wide doorways and halls, the large bathroom - you just entered it and felt really comfortable. Since then, I've always noticed how accessible houses were and been surprised that these sensible and attractive design elements aren't incorporated into every new house designed. I live in an area with lovely, architechturally interesting homes from the 1900-1950 time period. Definitely not accessible or even reasonably modifiable. I do try to make any changes I make to my home accessible - lever handles, wider doorways, decora light swithces - but if I ever have mobility challenges or have to care for someone with mobility challenges, I won't be able to stay in my house.

    I hope the changes to your home make it even more lovely than it already is.

    1. Thank you, Milia! Yes, like you said, the really shocking part of this accessibility experience has been that even NEW construction isn't accessible! We figured that moving to a new home would be the easier, less expensive option (even if that would mean a longer commute time for Matthew) if it were already accessible, but accessible homes just aren't on the market. Given the exploding baby-boomer senior demographic and their likely future needs, I find this appalling. My 1913 home has an excuse. But new, post-ADA construction?! It's ridiculous. So, we've tentatively decided to stay put--unless some amazing, accessible home magically comes on the market. Wish us luck! Best wishes to you and your family. :)

    2. I think you would have to build to get a home that would suit your needs, sadly - the accessible homes all probably have age requirements of 50 and up. I would suppose builders build what they know and they don't realize how nice accessibility makes homes look. And I am surprised some of it isn't national code - at a minimum door widths, cabinet toe kick heights and depths and switch heights. Those sorts of things don't cost more and are easily incorporated in every house. I think most people don't understand how nice a zero threshold entry is until you use one and don't have to step up the steps. Ditto for zero threshold shower.

      I am going to sit here and have a little daydream of the day when Bertrand is treated so successfuly you have too much time and energy on your hands and spend it crusading for accessible housing. You can change the blog's name to Overcoming Inaccessible Housing. This along with 4000 other pet projects you have interest in but little time to deal with at this point in your life, I'm sure.

      Best wishes on this step in your journey.

      Milia (Also known as Jen C)

    3. :-D I am daydreaming along with you! Many thanks for the good wishes--we can use them all. ;) We're enjoying the journey! Sending love & hugs your way. --C

  4. Oh, I remember that first room -- it was (is!) gorgeous. I suppose you could move all the bedclothes and decorations and so forth downstairs, but it's still not the same room ... plus Bertrand will want more input on the decorations. It is hard to be on different floors -- it's a shame there's no way around that unless somebody decides to built a whole lot of new ranch houses soon.

    1. Yes, we'll be moving a lot of his things down, and hopefully he'll enjoy choosing some decorations. I get to decorate his bathroom though. I can't wait! :) Yes, I am psyching myself out about this bathroom remodel. It will be fun. It will be fun. It *WILL* be fun! Grr! ;)

  5. What a beautiful bedroom he has been enjoying. I know that the remodel downstairs will include a room equally spectacular for B to enjoy. What a blessing that you have access to this group to make your house work for your family. And what a blessing that he reiterated your statement "I am here to stay." (I LOVE that line in the blog!)
    Can't wait to see images of the changes and new spaces coming your way!