Norm

We are all Norm...

Special Exposure Wednesday

In an attempt to 'beef up' for an upcoming 10K race, Ronnie started strength and conditioning training this week. Looking good!

A Tale of Two Dependencies - Part 2

Yesterday I told you about Ashley and her independent spirit. Ashley is and always has been very stubborn, very strong-willed and very driven. While those qualities can sometimes be hard to live with, they have served her well and helped her make the advances she has.

Then there's Ronnie.

Somewhere along the path of Ronnie's tumultuous past, he had learned to be very dependent. I know that as a young child with significant disabilities, it may have been easier to 'take care' of Ronnie rather than expect him to take care of himself. I also know that his past included many not-so-good situations, and Ronnie himself may have been afraid or at the very least, reluctant, to take the lead in his life. But, if he is going to achieve the level of independence he now says he wants, he's going to have to step up to the plate, and a great deal of that stepping up means attending to his medical needs religiously.

Here's one example. Ronnie must take a lot of medication. His kidney's are failing, his blood pressure is high, and his bladder doesn't work well. As a result, he takes hands full of medicines three times a day. Missing any of those medicines is not an option.

In all our discussions about living independently, Ronnie has been adamant that he can take his meds as he should, and can care for his other personal medical needs as he should. So I have decided several times to let him try. But the attempts have not gone well.

Video games, movies, chatting with girls, and other teenage vices have gotten in the way. Just last week he missed taking his medication multiple times.

For now, Ronnie has stepped back to let me manage his medicines and offer reminders about other medical needs. I know he gets frustrated, and like any 18 year old boy, longs for a life of his own. But somewhere, somehow, he is going to have to understand and accept what a life of his own means. I refuse to let him put his life in danger, and I hope he knows that is because I love him so much.

I want to support his goal of independence, but we need to work out the details, especially as it relates to medical needs.

A Tale of Two Dependencies - Part 1

As both Ashley and Ronnie have stepped into adulthood (they both turned 18 this year), my focus is on helping them become more independent. For a person with severe disabilities becoming more independent can mean many things - cooking, cleaning, advocating for themselves, etc. Both Ashley and Ronnie are still in school, and will be for a few more years, and the school is doing a good job of preparing them for employment. In addition, both have personal care aides who are working hard to instill a sense of independence in them. While this path to becoming more independent can be difficult, and progress is sometimes slow and difficult to see, every so often a new found skill of independence jumps up and high fives me. That happened this past Saturday.

Chip, Ronnie, Ashley and I were headed out to dinner to celebrate Chip's 23rd birthday. I drove to the restaurant, parked in a parking deck, and began the normal wheelchair-unloading, back pack hauling, helping Ashley out of the car routine. But before I could get to Ashley, she had undone her seatbelt, opened the car door, stepped out, steadied herself, stepped away from the door, closed the door, and waited for her wheelchair.

Did you get that? ASHLEY GOT OUT OF THE CAR ALL BY HERSELF!!!

While it may not sound like much to most people, trust me, it is HUGE. If Ashley can get herself out of the car, she can learn to get herself on and off a bus or a disabled transportation van. It means her world will open up, and she won't be dependent on others to always assist her in her travels.

Ashley set one small piece of dependency aside on Saturday, and I can't be any happier or prouder!!!

Tomorrow - Ronnie wants so badly to be independent. But is he doing all he can to get there????

Would This Fulfill Your Life?

This post is probably not going to make me very popular with some folks that live in my little corner of the world. The following video speaks to a partnership between the Richmond ARC and the YMCA. The Richmond ARC, according to its website, "In partnership with families, the Greater Richmond ARC creates life-fulfilling opportunities for individuals with developmental disabilities." The Richmond YMCA states on its website, "The YMCA of Greater Richmond is a resource within your community of men, women and children committed to bringing about lasting personal and social change. With a focus on nurturing the potential of every child and teen, improving the nation's health and well-being and providing opportunities to give back and support neighbors, the Y enables youth, adults, families and communities to be healthy, confident, connected and secure.

Pay particular attention to the last slide on the video:



So, what I saw on the video was a group of gentlemen (or clients, as they are referred to on the video) who appear to have developmental disabilities, gentlemen who are pulling weeds, planting plants, and picking up trash for the privilege (reward?) of being able to play basketball in the YMCA-owned building. I saw an ARC staff person and a YMCA staff person with the group of gentlemen.

On the last slide of the video, I saw the statement, "The Y Values Inclusiveness."

Did you see "inclusiveness" in action during that video? Did you see anyone other than the gentlemen and the two staff persons?

If you are going to try to sell yourself as a purveyor of inclusiveness, you might want to actually model some of that inclusion. Just saying....

Special Exposure Wednesday

Happy Howloween!

Can there be a balance?

How do you handle the unknown? Are you able to live each day not worrying about the future of your child with significant disabilities? If you can - If I could - would we be better or worse off? And would our child be better or worse off if we could set aside the worry?

I read this great blog entry written by a dad to a child with Autism. Mr. Baldwin wrote:

"Now, when people ask me if my son will one day live independently, or have a job, or find a partner, I answer them honestly: “I don’t know”. I no longer pretend that I have any idea what will happen in the next year or decade. And I’m so much happier this way."

He goes on to write:

" I have no idea what’s going to happen, with your child or mine. No one does. The secret, I think, is to embrace this fact, and teach yourself to love the unknown."

Do you think it is easier for this dad to "love the unknown" because his son is still very young? What if his son were approaching 21, being forced to leave school, and not knowing what the future held? What if this dad and his wife were facing serious health concerns and there were no other family members to step in and help care for his son? Does "loving the unknown" mean not worrying, not planning, not advocating, or is it a way to step back and take a much needed breath each day?

Does trying to "love the unknown" make you happier, or make your child happier? Being a super organized, super planning type of person, I don't think it would make me happier. I think I would just worry even more, wondering if I was doing my child an injustice by not trying to figure out what her future might look like. But is all that worrying and planning and organizing taking precious time away today and every day from my child? Can I, and can you, find a balance here - maybe a little less worrying/planning/organizing and a little more loving and just being?

I think I will try that approach for a while and see. (Dang, I just planned my approach to not plan, didn't I?)