The Race Toward Inclusion| Do you see it?
I love this picture. It reminds me of many of my favorite quotes:
“The real voyage of discovery is not in seeking new lands, but in seeing with new eyes.” Proust
“No one’s blinder, than s/he who will not see.” Kenny Rodgers’ song
“The race is not only to the swift, but to s/he who keeps on running.” (unknown)
“It is only with the heart that one can see rightly; what is essential is invisible to the eye.” Antoine de Saint-Exupéry
Eyeballs Running Everywhere
The racing eyeballs also remind me of late at night, lying in bed when my thoughts just keep galloping around in my head.
Our world is filled with a myriad of choices, distractions, good and bad news–all begging for our eyeballs and attention.
Parents of typical kids have trouble sorting out their priorities, and much of their intense parenting ends when their kids are 21. For parents of kids with disabilities, our hardest years are after graduation.
We are supposed to be experts on everything, autism, intellectual disabilities, developmental disabilities, govenment laws and departments on local, state and federal levels, advocacy organizations….
We are supposed to visualize our future, our children’s future.
We are supposed to foresee what will happen, so we can be prepared to protect our vulnerable children.
It makes me dizzy.
I want my bloodshot eyeballs to stop racing around trying to keep up. I want to be able to look forward to a future where my son will be okay. I want to be able to trust the professionals to do their jobs…I want to sleep in peace–(well, not the eternal kind of peace, just restful, you know sleeping through one or two nights 🙂
What about you?
Can you see the good–and ignore the distractions of failed levies, government cutbacks, negative news?
Can you watch the media focus on new segregated programs and ignore inclusive programs?
Can you envision new inclusive services in the community?
Can you discover hopeful ideas and events?
Can you anticipate next week being better? Next month? Next year? 10 years from now?
Can you believe you will have the people and resources you need?
Do you also feel dizzy?
We need to narrow our focus and concentrate on “the essential”: What can we do today to move toward the inclusion of our children in society?
We can’t solve all the issues of the world. But we can exercise the Power of One and do one thing today to make a more inclusive world for the person we care about. One thing. Today.
But how do we decide on that one thing? How do we filter out all the choices?
Pruning
Just like a gardener or farmer prunes the dead wood from a rose bush or apple tree, we need to teach ourselves to prune the information that bombards us everyday. We can make the choice to throw out some information, ignoring potential goldmines. If it is really a goldmine–it will still be there tomorrow. I do this by limiting the time I spend watching TV, the news, using social media like Twitter and Facebook. I don’t care what Brad Pitt is doing, I don’t want to hear about recent car wrecks, abused children, or floods in Asia. I can’t do anything about it. If it is bad, scary, if it is going to keep my eyeballs busy while I am trying to sleep–I prune it out. The world can move on without me.
Planned Ignoring
Planned ignoring is consciously making a decision to ignore certain things. Planned Ignoring gives me time to digest and analyze the information I already know. We need to allow ourselves to “see” and “not see” as we make our priorities. This will help us reduce the overwhelm. We can stop the racing eyeballs in our minds. We can allow ourselves the luxury of closing our eyes for a moment, and find our FOCUS.
Seeing with New Eyes of Inclusion
Long ago, I decided my “voyage of discovery” was to the land of inclusion. It meant learning new ideas, shifting my paradigm, and it is based on the principle of normalization, I want my son Aaron to have as normal a life as possible (period). I can make a difference for him by seeing with my new eyes of inclusion.
What do I see? What does my loved one see?
Is this moving toward inclusion?
I have to live in the real world, so I compromise a lot. But I try to keep my vision focused on the goal: Inclusion for Aaron and others. For instance, yesterday I again had a discussion about filling out a form when we picked Aaron up at his house. Because of the principles of inclusion and normalization, I will still make up my own form, rather than use the medical model form from the agency. Six month ago I was promised this would be changed, but Herbie still lives. Herbie bits the dust“>Click here.
When I first confronted the agency six months ago, I was using “pruning.” I would chop out the old policy. I made phone calls, was given assurances that it would be changed.
For the last five months, I’ve used “planned ignoring”. I kept hoping they would keep their promise to change the form. I kept signing the form I made myself. (The house staff was also using planned ignoring–and just let me do my thing.)
But now, it’s time to use my “new eyes” and make one change as we journey into our annual ISP (Individualized Service Plan–the adult service version of the IEP only without the due process).
I’m predicting: The EYES will have it!
Sweet Dreams Everyone.
Keep Climbing: Onward and Upward
All my best
Mary
COMMENTS:
What do your eyeballs see? What is your vision for the future? Do you think the concepts of “pruning,” “planned ignoring” and “seeing with new eyes” are useful strategies? Are some people incapable of “seeing”?
“It is only with the heart that one can see rightly; what is essential is invisible to the eye” by Antoine de Saint-Exupéry is such an amazing quote. As you mentioned our “eyes” run around in our heads at night trying to fix the problems in our lives and the lives of those we love. It is a great point that pruning ourselves of the less important things could lead to a more peaceful and productive life. Often times I think we lose sight of what is most important (loving people) because our minds are running all over the place emphasizing things in our lives that are in the moment. I can see how pruning is a great exercise. “Planned ignoring” seems to be a great idea as well. If we try to fight every battle at the same time we will spread ourselves too thin. We have to take a little break and ignore things in our lives in order to regain sanity and have rest. I think that seeing with the eyes of the heart is important and I am unsure if everyone can see out of the eyes of their heart. If everyone could see out of the eyes of their heart then a lot of discrimination that has happened would never have happened. I believe that most people are able to see out of the eyes of their heart they just have not been exposed to that compassionate of a worldview before. Do you think that education can help most people see out of the eyes of their heart (in a compassionate way seeing everyone as equal and better than themselves)?
HI Kelly,
I do believe in education as a way to change attitudes and give people new skills and experiences. That is why I believe so strongly in inclusion and Universal Design for learning.
Brown vs. Board of Education gave us the concept of “separate is inherently unequal” which makes so much sense because we fear things we don’t know. If we have never seen or had a friend who couldn’t walk, or talk, or who was a different race, ethnicity, religion… then it is going to be easy to make it an “us and them” situation–where they are TOO DIFFERENT from us. But if we grow up with Emily, or Jake, or an Aaron who is just Emily, Jake and Aaron — they are not these strange humans, they are just people like us who might need more supports. Then we can have that “compassionate worldview” you mentioned. Thanks for your comment and continuing the discussion.
I really enjoy this article! I Think everyone can relate to it a little bit when they can’t stop thinking at night about the things that are bothering them the most. I admit that happens almost every night. It is such a good idea to prune out the bad things because it is true that some things we can’t do anything about and it will just keep us up at night wondering what if. People need to stop worrying about the bad things that won’t change because worrying will not help anything. Thanks for posting!
So tonight when your thoughts start running around in your head, visualize the racing eyeballs, smile, and peacefully go to sleep. Thanks Annie.
I really enjoyed reading through this article! I particularly like the section about pruning–I agree that in order to move forward, we need to prune to achieve our goals. I love that you address these issues, because most of us really are blind to them.
Thanks Morgan. Hope it helps. I actually first learned about “pruning” in an early childhood workshop on how children learn. We prune the words we understand and then build on them. That is why we learn the same language as our parents. We prune out the other sounds and concentrate on the ones we recognize. I think pruning is also useful for dealing with stress. What is our top priority? Then prune out he rest.
My eyeballs have been racing around everywhere a lot lately, too. The future is scary and unfamiliar. I haven’t been able to sleep in peace either. Life is full of struggles, anxieties and other hardships and it’s easy to let them overwhelm you but you have to stay strong and keep trudging along. What doesn’t kill you makes you stronger!
Hi Olivia, glad you liked the picture? Hope this helps you understand inclusion a little better.
A couple of things really stood out to me in this article. One was that you always here how the parents are responsible for their child for the next 18 or 21 years, then that it. Parents with children with disabilities are always responsible for them for their whole life more or less. Another was the idea of “pruning” I am very good at this because for the most part I could care less about what’s going on in the social media, or places I can’t control, it’s good to know some things but others there is just no point. I also like “planned ignoring” I am also good at ignoring certain things that I just can’t deal with at the moment, and make a mental reminder to deal with it later.I think this is important because you can’t overload your brain with things you can’t solve right away or need to think about. I have friends that tell me things that juts completely overwhelm me beyond belief and I’m just like “Stop, I can’t deal with this right now lets talk about it later.””Seeing with new eyes”is a useful strategy and it does seem that some people are incapable of “seeing.” I think these three strategies are important, I especially liked when you said “I have to live in the real world, so I compromise a lot.” I feel like not many people understand that, you can’t always have it your way or exactly the way you want it, this is the real world, compromise is essential.
I loved all your comments Helen. The strategies of “pruning, planned ignoring, choosing your battles…” all are ways of making it though the day. It sounds like you are developing your “new eyes” and that will give you many more strategies for coping with whatever comes along. And having good friends around you is the most important strategy of all. 🙂
“No one’s blinder, than s/he who will not see.” Love this quote! so true! Also, I really like the idea of planned ignoring. Finding our focus is so important when trying to make a difference. I really admire everything you do for your son and others as well!
Thanks Megan,
If I can do it, so can other people. And it is going to take each one of us to move forward.
I really enjoyed this post. I think everyone can relate to these issues on so many levels. I believe it is important to “prune” and move forward one step at a time in order to keep your insanity and achieve goals. I am enjoying your blog!! Thank you!
Thanks Shannon. I’m hoping you will all talk to each other and share your favorite stories.
I know it was a typo, but “keep your insanity” just made me laugh–it’s perfect for how I feel most days.
The section of this article that really stood out to me was the part where you discuss the future of kids with disabilities. You’re right, most parents are done parenting after their kids turn 21; but this is not always the case for parents with kids who have disabilities.
This made me think of my friend Haley. Haley has a disability and we have grown up together. Our moms are best friends and they both have the same first name, Becky. We have always gone to the same school, but now that I’m away in college we don’t see each other every day.
It’s difficult to know that I am on my own and able to be independent while Haley has to rely on her parents to help her and go a different route that doesn’t involve college.
Sometimes I think it must be hard for Becky to compare my life to Haley’s since we are both the same age…but I think we all can’t dwell on things Haley might not necessarily be able to do because she makes up for the things she “misses out on” with her amazing personality, happiness she finds in the smallest of things, and the joy in the activities she does get to do.
Sure Haley’s mom Becky will have to continue to parent (and so will other parents with children who have disabilities) but I think pretty much everyone can agree it’s worth it since these are such amazing people who bring so much joy to our lives.
Katherine, make sure you share your thoughts with your mom, Haley, and Becky. They will cry to hear you give such love to your friend. Hopefully Becky has gotten some good advice for Becky and has a plan in place. Let me know if you need some information.
This is another interesting article that shows just what many Americans fail to see. People fail to look at the problems that are happening in society and more focused on their own selfish wants. People need to start contributing on things to better their community instead of watch other’s lives and wanting what they have. It is this kind of attitude that prevents the nation’s progress as a whole.
Drew, you are going to love next week when we talk about social systems. You are absolutely right, we have to see the big picture, we have to look past our individual needs and wants.
If you want, type in the keywords “social systems” in the block at the right top. There are several articles I think you will find interesting.
I thought that this article was very good and it was full of information. This article made me think about things that I’ve never thought about before and it was very informative. I really enjoyed it.
Breaking old paradigms is what learning is all about. Glad you liked this Paige and it made you think about new things. Talk about it with your friends. Help us spread the word. There really is much to be excited about.
I like the comparison using the eyes and asking “what do you see” because to some, what Brad Pitt is doing or what is happening over seas could be more important to them verse what some of us see like the failed levies, or negative news. Perspective is a challenging and endearing thing.
So right Kelsey, perspective is EVERYTHING. Thanks for becoming one of our new “eyes.” And don’t you love the running eyeballs?
“We can’t solve all the issues of the world. But we can exercise the Power of One and do one thing today to make a more inclusive world for the person we care about. One thing. Today.” I really like this way of thinking. It is so easy to get caught up in trying to change a million different things all at once. Taking things one day at a time and focusing on one goal at a time will help make strides toward inclusion. Unfortunately nothing changes overnight, things take time and that can get discouraging and frustrating. Using pruning and planned ignoring to help focus on one goal at a time, I think, is a great way to make strides towards inclusion and normalization.
You’re right Ed. “One thing. Today.” Let me know if you use your “Power” even if it is a small thing.
I also enjoy this quote: “The real voyage of discovery is not in seeking new lands, but in seeing with new eyes.” I had a friend that I knew growing up with downs syndrome. She was my age and we went to church and attended Sunday school together. When I first met her, I remembered her as the “disabled” girl. But growing up with her for a few years opened my EYES to who she is as an individual. She’s a incredible reader. She could pronounce some of those crazy bible names (like Zabdiel, and Gederothaim… yikes) that I had difficulty pronouncing. She also has a sweet, kind heart, always ready to make a new friend. I learned to know her at the level of her heart and truly valued her friendship.
“The real voyage of discovery is not in seeking new lands, but in seeing with new eyes.” (Proust) I think that this quote is especially important in terms of teaching and parenting children in special education. It is so much better to begin to understand your child and not look at them as different just in a different light. You have to understand that these children are different but its a beautiful thing rather than a negative thing. It is crucial to realize that its all about finding the positives in these children because they bring so much to the table. I think everyone should keep this quote in the back of their mind no matter what child they are around.
I’m glad you like this quote too. Sometimes I think Proust must have written it just for us:)
I think the planned ignoring thing is very interesting. There was a study conducted. They placed a person in a room with a stereo. The person could controll the vollume of the stereo. Through the stereo, the examiners played 2 dialogs, one agreeing with the person’s opinions and another that was against the person’s opinion. The dialogs had white noice in the bacground. They found that the person would turn up the dialog they agreed with, and would attempt to understand it more than the other dialog. In effect, people try to hear what they want to hear. I believe that we need to open our eyes more to what we would normally ignore. We need to at least try to understand different people and different points of view. Every one has a story worth hearing. People with disabilities are ignored because they aren’t believed to have anything worth saying, but in my opinion, they see the world through glasses that are not crowded with politics, or uterior motives. They see the world pure.
Hi Alaura,
Thanks for your comment, you make some excellent points.
“They see the world pure,” is so insightful. You are right that many people do not see the inner beauty of others, whether they have disabilities or not. We all need to “open our eyes more to what we would normally ignore.” We all need to stretch our boundaries and hear the stories of others. We would have a better and more peaceful world if we learned tolerance and to see the world through the eyes of others. Lots to think about. Appreciate your thoughts, hope you’ll stop by again.
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great post marry, we should do our best to stay positive even if life has got some negativity
Thanks Farouk,
That’s the neat thing about starting a new year–you can get a fresh start.
Your brainstorming ideas are one. unfortunately I’m at this moment in time I have to pretend to be Atlas. Yes the load is heavy more emotional then physical though. I’m doing what I can to take care of my health. But as you say this is a bit on the extreme side.
The other thing that is giving trouble in concentration is my right cornea is getting very painful. Hopefully in a month or so(I’m hoping way less)I’ll be getting a complete cornea transplant. That is also why I’m pushing myself so hard to get some things done before that and if this is indeed Mom’s last phase in this dimension.
Thanks so very much for your kindness and thoughts. They are very good to hear. Oh I do call every day and check on her status. It is what it is. To quote the great comparative mythologist Joseph Campbell “The Hero’s Journey”.
Gary, hope things work out. You are still going to need a circle of friends to try and help you thought the next couple months. Try and find some people to help you. God Bless.
I’m going to have to think about this post a bit. I have never heard of planned ignoring-HHmmmmm. Sounds interesting. I have heard of pruning though and i have to confess that is kinda hard for me.
My perspective on inclusion is this. While I continue to do what I was not supposed to doing. That is being a caregiver to my mohter in one capacity or another since about 16 or 17 years old. I feel just as out of plac as I did when I was growing up and as out of place as Maria, Richard and the others I got to meet while volunteering what seems like a life time ago.
So while you see the inclusion problem from a mother’s view I see from the viewpoint that those who grow up with severe disabilities do. I’ll admit I sometimes envy Maria and Richard(and most likely Aaron) Simply because they are free from the mind numbing brainwashing that the rest of us have to either accept or fight down. I also could use their unconditional love and support right about now. I simply imagine the three of us preparing for the 3 days of no sun that the Maya and other indigenous elders say is just around the corner.
Some of us like me tend to see the forest but not the trees. For those like me the planed ignoring and pruning are difficult at best.
Well there my curious vantage point. I am sorry but I don’t see the goal of an inclusive society anytime soon. I’m glad you can.
Have a great day Mary and all your readers.
Gary, you are going through extreme sadness right now. Think about it, your mom has been your biggest fan and ally and now she is very ill. It has to be frightening and exhausting. Both the physical and emotional stress must be terrible.
You are a dedicated son. You have spent years and years caring for your mom.
In your recent messages I worry that you are not taking care of your physical and emotional needs. No one can do this alone.
So, let’s brainstorm a minute. Who can you go to for some help. I know you worry about your mom when you aren’t there. Is there someone at the hospital who could look in on your mom and maybe give you a call about how she’s doing? If you called on the phone would they pay her a little extra attention? Does you mom have any other friends or relatives who would stop in and visit even one time?
You are carrying a heavy load right now. I wish I was closer to help you out. Gary, You and your mom are in my thoughts and prayers.
I’m glad you’re doing one thing, Mary. More than that seems overwhelming. Planned ignoring/turning a blind eye is a great thing too. Where would we be without planned ignoring?
Glad it made sense. Yes, planned ignoring is a great strategy. Of course, my kids have mastered it better than I:)
You are among the amazing autism moms I had in mind as I wrote my most recent blog posting – ironically we may have been writing at exactly the same moment.
I LOVE the running eyeballs!
Thanks Char. Let’s exchange links.
After Grandma and the thong, and now the running eyeballs… I’m going to have to find some more dandy pics.