I’m not the gardener in our household. My husband is. He and his green thumb create and nurture a beautiful backyard and gorgeous window boxes for our house which makes it all the more distinctive. He carefully plans his landscaping and garden based on where he knows all of the plants will do best – some in full sun, some in shade, part in sun, some in front, some behind, some in clusters, some with space between plants… You can imagine, then, that removing our big, beautiful pine trees from the backyard was a big decision from the perspective of how our garden and yard would fair without them. It was also a sentimental decision. It seemed like it was just a couple years ago that we planted them when the kids were little. They – the trees and the kids – grew quickly. (When kids outgrow the house, they move out. I guess I could now say the same about trees!)
The trees were tearing apart the fence, choking out most of the flowers around them, causing damage to the neighbor’s yard, and dangerously challenging the security of electric lines. We made plans for a new landscape that would return beauty to the backyard and be easier for my husband to maintain as he (we) gets older. Still, we put the final decision to chop down the trees off for years. One summer we didn’t have the time. The next, we prioritized our spending differently. The following summer we were traveling too much. But now it was time; They had to go.
I thought for sure that there would be complications with removing the trees. They were huge and tangled among the telephone and electric wires so I had no idea how it was possible to remove a tree without losing a limb! (Forgive me for that.) To satisfy my curiosity, I worked it out so that I could be home to watch the trees be taken out. The man taking down the tree started by taking off all the lower branches as his son pulled them away. Then he climbed up to the next layer of branches removing those until he got to the few branches at the top. Step by step, they tore it limb from limb. (Again, I beg for mercy.)
Phillip was also home and, being the connoisseur of sound that he is, loved listening to the “ZZZZZzzzzzzzzzzzzzz” each time the chainsaw was started. The tree man was also interested in Phillip and, from his aerial perch, removed his protective headphones to ask me a few questions. From his view, he saw my yellow VW bug with the WisconSibs signs on the sides and asked me “What does that mean?” I replied, “It is the organization that I run that provides support to people who have siblings with disabilities.”
“Really? That’s so cool.” he said. I explained that when Phillip was diagnosed with a disability I thought about the fact that it wasn’t just his life, but also his sister’s life that would be affected. “That makes sense, but how did you just know that?”
“Well, it’s like this garden. Like a family, it’s a system. When you finish taking out that tree, the other flowers are going to get a lot more sunshine. That’s what we want. But some are going to love the sunshine and grow even faster. Others are not going to like the sun and if they can’t adapt, start to whither. We’ll either move them to shadier places in the garden or plant something next to them to give them relief from the sun.”
“Oh, I get it.” He said. “When I had my accident and lost my leg, my son here was affected, too, and I was worried about that. I can see how siblings would be affected by having a sibling with a disability in a similar way.”
“Of course.” I said. “And just like siblings, I bet he could tell you that there were negative things, but also positive things that came from that. You seem to have a close relationship with your son.” “Our organization helps siblings talk with other siblings, and to their families, about the concerns and joys that they experience. I guess you could say, we help them adapt, grow, or learn to recognize when they need help and where to find it.”
“Wow,” he said, “That gives me a lot to think about.” And the chainsaw revved again. ZZZzzzz!
Hey, there! Long time, no see! (I promise that I’m going to be trying to post more regularly…its just that, well, I haven’t been.) It is Monday morning and I am wide awake and ready for it to be Thursday! Why?
My family is coming to visit on Thursday!
When I moved 8 hours away, I never knew how much I would look forward to seeing my family. Surprisingly, we see each other a lot for living 8 hours away from one another – on average about once every two months. But I just get so excited when I know they’re coming!
This trip is influenced by the fact that my mom is speaking at a conference in Indianapolis on Sunday, but we’ll have plenty of time before that to catch up and have fun.
I think I have so much anticipation for a few reasons:
- I’m genuinely excited to see my parents. All three of us are so busy that we essentially “bank” a lot of information and stories to share with one another. We talk on the phone for an extended time at least once a week (usually Sundays), but there is something about being together in person that is just so much better. My mom and I typically can’t get words out fast enough to fully catch up on all that is going on in our lives on one phone conversation. Being together in person makes catching up so much easier.
- I’m able to catch up with Phillip. When Phil and I are apart, there isn’t a whole lot we can do about keeping in touch and communicating since he is not able to speak and doesn’t care much for Skype. My parents keep me updated on what he’s doing and how things are going, but that isn’t a substitute for good and proper quality time. When we’re together, we’re able to silently catch up on one another’s lives by just being together. There’s nothing like it, and I think our type of communication is unique to the sibling experience: no words are necessary for us to understand one another. In some ways, I can “translate” for Phillip better than anyone else so I feel like he gets a little relief as well.
- I get to show off my city. There is lots to do where I live, especially in the Fall. I enjoy taking my family to new places – or places they visited as children – and thereby do some more exploring myself. Weather dependent, we may head to the Fall mecca of Brown County, Indiana this weekend.
This weekend’s visit (beginning Thursday) it just the start of the family visits this Fall. I’ll be spending a week at my parents’ house over Thanksgiving, and then a week with my parents and extended family on vacation around Christmas. That’s three monthly visits in a row!
Over the past several weeks, it has been pretty quiet around here. I’ve posted a handful of things on the SHY Facebook page, but not anything that took me more than a minute to do. My mind has been a bit pre-occupied.
A few posts ago, I talked about the mental space I needed to relieve myself of being surrounded by disability-related things 24/7 (work, family, the media, this blog, etc.).
Then it became more than that. I needed mental space to be able to process all of the tragedies we’ve seen in the news lately. Between senseless murders, misinformed decisions that affect real people’s lives (I’m looking at you, Governor Walker, among many others), false allegations that create unfounded media hype, and other losses big and small, I didn’t know what to say. This blog began to feel so small and unimportant compared to the things I was reading about that discussed recent events on the news (and things that were not deemed news-worthy by one political party or the other).
As I thought about and processed what I was reading on the controversies surrounding topics like Caitlyn Jenner, lion poaching, alternatives for state Medicaid funding, racism (related to recent shootings and in general), and Planned Parenthood, I found myself feeling sad for a lot of our world – sad for people who feel oppressed or singled out, sad for people who feel like they’re always forgotten, sad for people whose lives will be negatively affected by the choices of others, sad for people whose goals seem solely to belittle people and cause drama on the internet, and the list goes on.
It is too easy to get wrapped up in all of this sadness and trauma of the world around us. With every article I’ve read, from either side of the aisle, I have asked myself: Why can’t we all just be nice to each other? This question may garner criticism from some who claim that it is too simplistic, but I would argue that simplicity is an area where we are sorely lacking in the world today. And I’d also argue that this question isn’t as simple as it sounds.
One of the first steps in being nice to one another is choosing joy, which is one area that I have been diligently working on since the radio static took over this site. When we choose joy, our joy radiates to those around us. It whispers; it doesn’t roar. And joy is an area where the news and media doesn’t help us at all – all the “doom and gloom” stuff threatens to strip us of anything positive. But we can choose to approach even difficult things with joy.
Choosing joy requires the ability to see things from a larger perspective. For some people, this may include a religious or spiritual component and for others it won’t. Choosing joy also requires us to acknowledge that there are times when choosing joy is difficult. Nobody is perfect at choosing joy all of the time.
Choosing joy requires us to acknowledge and own all of the emotions we may feel in the difficult times – sadness, hurt, guilt, resentment, frustration, anger, jealousy, and everything in between – and it requires us to move past them. It requires us to choose not to let those feelings run or rule our lives. It may take time to let our hearts and our heads heal, but when we choose joy we have a place toward which our heads and hearts can turn.
As I renew my commitment to myself to choose joy, I invite you to do the same. Consider it our rebellion against the hurt in the world.
In case you need any additional inspiration:
Even after 22 years of special needs parenting, I am still learning to rely on my GPS: Group of Parenting Supports.
For months I looked forward to hitting the road and spending time with her. Recently I got a new (used) car and was excited about taking it on its first long-distance trip. I decided before leaving Wisconsin that I was going to experience what it is like to be use technology for directions and I would let the little person inside the Google Maps app on my phone provide navigation.
That may seem like a simple decision. Afterall, many people use GPS navigation and have done so for years now. But I’m a “digital immigrant” and baby-boomer, so I’ve always liked using a paper state map if I wasn’t familiar with how to reach my destination. Paper maps allow me to see the whole state before I focus on the specific route to get from point A to point B. By seeing the big picture, I’m able to get a sense of my position relative to a larger context. I can see the destination and note the landmarks I may see along the way, the towns I may drive through, and the terrain or shape of the highway.
With a paper map, I use this knowledge along the way to assure myself that I am on the right route or become aware if it appears I may be going the wrong direction when I don’t see what I expect. With this sense of relative position and direction, I usually feel pretty confident that I’d be arriving at my destination. I could relax and enjoy the journey, trusting my instincts and sense of informed direction.
But it was time to “get with the times”. Since I was confident about the route (I’ve been traveling the same route from WI to IN for 35 years), I felt like I could experiment with the voice GPS on the way. I loved the convenience of the GPS, especially that the voice would warn me a couple miles ahead of an exit that I’d need to use. I was amused when the voice would mispronounce Wisconsin towns and roads along the way: “Outagamie”, “Oneida”, “Shawano”, “Kaukauna”, “Menominee”, “Oconomowoc”, “Wauwatosa”.
When it was time to drive from Christiana’s house to Louisville, I was ready to use the GPS again. Christiana keyed in the address of the conference hotel and we were on our way. The first few miles seemed to make sense and we started off on a familiar road with no issues. Southern Indiana is beautiful in the spring with its rolling terrain, lovely green foliage, large horse farms. Not too long after we got started, then we got directed to leave the 4-lane highway that was so familiar. We were led to a winding, 2-lane highway that seemed to go through one speed-trap little town after another. Suddenly, I wasn’t sure we were on the right track. I asked Christiana to check that we were headed the right direction. She quickly checked the screen and replied, “Yep, that’s what the GPS says. It will get us there. It always does.”
YIKES! She was putting a lot of trust in that little device! I wanted to stop and check a paper map. I wanted to know where I was relative my destination. I feared we may be traveling in the wrong direction or accidently going to an address in some other city. I hinted that I was uncomfortable with the route, but again, Christiana assured me that we’d be fine. I listened and kept driving, assuring myself that while it may not be the route I expected, traffic was light, there was no construction, the scenery was beautiful, it was still light out, and we had plenty of gasoline.
About 3 hours later, we arrived at our destination. Later I learned from other conference participants who drove down from Wisconsin that they had been held up for miles in construction and traffic during their travels.
I’ve often felt that kind of uneasiness. It’s a mix of confidence and doubt, blindly following the voice of a GPS going through unfamiliar territory. It’s analogous to my experience as Phillip’s mom.
Phillip didn’t come with a paper map. His path has never been clear or familiar. I suppose no one has a life that is predictable and certain, but unlike my experience with raising Christiana, we didn’t have the typical things a parent sees on your route: mile markers, exit signs, and stoplights. Phillip’s developmental milestones, growing-up experiences, life events were unpredictable and unexpected at times. With such a rare chromosomal abnormality, there are still no clear road signs along the way. I can’t see where we are relative to the final destination.
So I don’t always know where I’m going. I don’t always know how I’ll get there. It can be scary at times, but most of the time it isn’t.
What keeps it from being scary for me? That’s simple. It’s the voices of my personal GPS, my Group of Parenting Supports: my husband, Christiana, our extended family, our friends, our neighbors, service professionals, and our community. They provide encouragement, confidence, new ideas, and offers of help. But ultimately, it is the blessing of faith in God’s Word that constantly keeps me hopeful and confident that Phillip’s destination is clear even if I can’t yet see it.
Phillip’s confirmation verse from Jeremiah 29:11 “For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.”
Oh – if you’re wondering. I use my phone’s GPS now…but I keep a paper map in the glove box.
After a quick night’s rest from the first day of the conference, we were up bright and early to get ourselves off to the second day of the Sibling Leadership Network Conference! It didn’t seem like work to get up since I knew I was going to be ready to learn more during the conference’s break-out sessions.
The first session I attended was a presentation called Supporting Self-Determination. This presentation, made by a panel of two siblings and a self-advocate, was a great reminder of just how important self-determination is and how difficult it can be to attain true self-determination in the midst of coordinating, conforming, and navigating the service system. Speaker Pat Carver illustrated five principles of self-determination: freedom, authority, support, responsibility, and confirmation (to be leaders). Notice, she pointed out, that choice is NOT one of these principles. Choice, Pat said, still gives power to the person or system offering the choices and is therefore not entirely self-determined by the person with the intellectual disability.
The importance of natural supports was highlighted both by the self-advocate (Liz Weintraub of Tuesdays with Liz) and the sibling presenters. Liz shared her experience of how important her family’s support is to her and how their influence is unmatched by any service provider or paid support. Sibling Rachel highlighted how her family has helped her sister who has profound intellectual disabilities and is nonverbal maintain her rights to self-determination despite the inquiries this has sometimes caused with the service system. It really made me think: As a professional myself, am I doing all I can to enhance and support my clients’ self-determination the way that I would want another provider to support these things for my brother?
The second session I attended, “We Are Family: Understanding the Collective Family Voice” seemed to be a natural transition from the first session. It was presented by a representative from Parent to Parent, Self Advocates Becoming Empowered, and the Sibling Leadership Network. This session illustrated the importance and value of a triad of advocates, each with a distinct voice: the individual with the disability, the sibling(s), and the parent(s). It encouraged siblings to talk with their siblings with disabilities and their parents to help promote and design supports that will be most healthy and helpful for all members of the family unit.
As the conference wrapped up, most of the WisconSibs gathered for a lunch out at the Hard Rock before we went our separate ways. We enjoyed having some time to process the content and meaning of the conference. Each person had a great experience and was touched in a little different way.
I am so glad that I was able to attend the conference this year. I hope that if you’re interested in attending that you’ll join us for the conference in 2017!