Skip to main content

Drum Roll Please: The bathroom is complete!


Our bathroom saga has been a long tale. We still have to add grab bars and a few other finishing touches, but it is complete. Hallelujah!


It has changed our lives immeasurably. 

It is unbelievable having bathroom space like this for Ben. Yes, it is beautiful and new and wonderful as far as bathrooms go, BUT it is AMAZING how much it has changed things for Ben:

1. Independence. Ben can sit on the toilet without the Blue Wave toilet system. He hated to be strapped into the special chair, and he refused to use the toilet. As soon as he was taken off, he went in the pull-up, no matter how much time we let him sit. It was a power struggle, and he won every time. And let's be honest, I took him less when I knew it was a lesson in futility.

Now, he is using the toilet without hesitation. He is not trapped by the strap, plus he is just like everyone else now.



Ben dresses at the counter. He holds on and lifts each leg to help put his pull-up and then pants on without being prompted. In the past, I laid him on the hallway floor and dressed him there. For some reason, he always refused to stand back up. Getting him up often took the help of my husband or the other two brothers.

Now he gets dressed and I walk him to his wheelchair. My back is saved, and he has the satisfaction of doing something for himself.

Ben giggles quite a bit when he stands at the sink and looks in the mirror. 
This is one such morning while he was getting ready for school. 

2. Safety. The old bathroom is 40 square feet - fine as a bathroom for a typical person, but a nightmare for someone with special needs. We had to do a lot more lifting to get Ben on the toilet, into the tub and out of the tub. Even though he has the skills to do these things with assistance, there was just no room to allow him to do so.

I hurt my shoulder badly in May from lifting Ben onto the Blue Wave toilet. It was a matter of time before someone else hurt themselves lifting Ben in and out of the tub.We have been lucky.

The space in the new bathroom allows Ben to step in and out of the tub, stand at the counter for dressing and washing his hands.



3. Time. Ben sometimes needs extra time on the toilet. In the past, we had to rush him or tell the brothers to wait. We now have both bathrooms and everyone can come and go as they please.



4. Storage. Ben has a few extra items that need to be used on a regular basis in the bathroom. With the storage space, these items are at our disposal. The old bathroom did not allow for that and we had to run around to different rooms to get what we needed.


5. Ben Proof - Ben loves to chew on toilet paper and shower curtains. The new bathroom has no shower curtain and the toilet paper can be easily moved to another location. Does not sound like a big deal - but when you have to Ben proof the bathroom every time he used it, the task got tedious.









When I made this list, I was floored by what it took for this bathroom to be built: 21 organizations, more than 75 people and at least $50,000 in time and materials donated. Mike Waite with NARI Charlotte, Mark Wasserman with Rebuilding Together Charlotte and Eddie DeRhodes of DeRhodes Construction lead this project with the support of these companies, their staff and subcontractors:

Aldred Electric

ABS Insulation


All About the Pipes


Andrew Roby

Barefoot & Co. 

Bedford Falls Builders

DeRhodes Construction

DiFabion Remodeling 

Ferguson

Harkey Tile & Stone

Kohler

Master Craft Creations

Quality Comfort

Queen City Lumber

Red Rooster Contracting

Roby Electric

Southend Home Improvement

Summit Insurance

WAC Contracting


Every single person that came to our house was genuinely happy to help. Sometimes, they asked about Ben or shared a story about someone in their family with special needs. In one case, we made a connection and I was able to share educational resources with the family. 

This was a great experience for us, and we are thankful and appreciative to the people who were willing to help with this huge project. 


Comments

Popular posts from this blog

Catching up with Ben

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he's can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru