Privilege


Privilege

Normal vs ‘non-normal’

A ‘normal’ person goes to a grocery store and they walk down the aisle. They reach up, they squat down. They don’t need to ask for assistance. They just do it. We all know that they put the cheaper stuff further out of view and reach, but for most people, that’s not a problem.

A ‘normal’ person goes to JC Penney or Kohl’s (yeah baby I’m calling you out) and they move through the aisles. If they have a stroller that might pose a small problem. But in general, they hum to the music being played on the speakers and they shop.

A ‘normal’ person goes to a large event where there are masses of people and they walk, they eat, they chat. They are aware there are children there, and try to keep an open eye for children. Nothing hinders their movement.

A ‘normal’ person goes anywhere and no one bats an eye. Sure, there might be some scenarios where some look somewhat out-of-place, but in general it’s kind of same ol’ same ol’. Blending in with the crowd without having to worry.

A ‘normal’ unborn life is far, far more likely to have a fighting chance at life just by being born.

My daughter goes out and people stare. It doesn’t matter what she wears, it doesn’t matter what she does. Someone is going to stop and stare. Sometimes, as her mom, I get to see a couple of kids or a group of kids stare and then look at each other and whisper and laugh, then look back at her and then at each other and laugh some more.

My daughter goes to an event or attraction and is far more likely to become frustrated and mentally exhausted with what is going and will shut down. This obviously doesn’t help with the staring and the whispering and the laughing.

A person in a wheelchair goes to a department store and is barely able to navigate the aisles, so stays home and orders online. Sometimes, they have to order special things to help them reach and grab items on the top shelves so that they can be more self-sufficient.

A person with special needs goes to any event and will more than likely have to deal with the stares and people calling out words like “freak”, “retard” or “spaz”. They’re more likely to be taken advantage of and bullied.

People with Down Syndrome are far more likely to not even get to that point of existence since some 90% of unborn children with Down Syndrome are terminated and that spans the races. They rely on the voices of cognizant adults who understand that they aren’t ‘something’ to be feared to rally for them and teach others that they are just as worthy to have a chance to live as a ‘normal’ unborn child.

Keep calm, it’s cool – it’s all about awareness

I’m not mad at you, JC Penneys or Kohls. Nah, you’re blissfully ignorant of what others deal with and besides how much money might you really make off of people like us? Special needs kids don’t want to look cool, they’re not interested in being like others. Special needs adults don’t need to shop.

Fellow shoppers, fellow event attendees, you might kind of get it. Some of you might look out and see a person who reminds you of your aunt so and so who is wheelchair bound and then you happily go along your way to the booths of beer or falafel. It’s okay. It is hard to understand what it’s like to live someone else’s life when you’ve never been there and done it.

I’m not mad. I’m not outraged. I’m not asking for anything other than to grow the awareness of the differences.

It’s about the awareness, and growing understanding of the disparity between people who are more able than others. I mean, you would think that in the year 2014 I wouldn’t have to ‘splain this to people, but hey, no bigs, I do. And I’m okay with that.

I’m okay when I go to the store and realize that Penney’s and Kohl are in it for the profit and that grocery stores stock the less expensive stuff higher or lower but never within reach.

I’m okay when we try to make plans to go someplace like Greenfield Village or the Detroit Zoo and know that it’s too hard for Hannah to do so we just don’t go. She is capable enough to walk but that far of a walk would be too hard and bikes aren’t allowed so we just stay home and ride around the neighborhood-again.

I’m okay when other kids just stare at her trying to blend in because their exposure to individuals with disabilities is so limited.

I’m not so okay with the idea that people are so infatuated with the idea of perfection that never has and never will exist that they terminate the unborn lives of babies with differences.

Even less okay when I know that people are laughing at her despite how hard she might try to look ‘cool’ and wants to fit in. Yeah, those people I typically want to smack, but then I remind myself, they’re ignorant. They don’t get it. And then I take a big breath and look at Hannah and think of all the other kids like her.

But in the end, it’s still all cool. Why?

Because I know that as humans we are a work in progress. We are growing, hopefully with the ultimate goal of greater compassion. I see people all over who do at least kind of get it, even if they’ve never had to walk in Hannah’s shoes, or mine.

Like the people who helped to make it possible for my daughter Hannah to have a large tricycle just for people like her and gives her the wheels to move and go and do things it

This bike has made it possible for her to expand her world.

This bike has made it possible for her to expand her world.

would otherwise be difficult for her to get to. Now, if we can just find more places to take her on her bike…….

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Changes


Changes to the website

Well, it was a long time coming. Yesterday we were able to make a change so that the unspokenlove url will point to this blog, meaning, essentially, that this is now the home of ULove.

It took many hours of work to get that website up and running. So, as you can imagine, it was difficult to say good bye and let it go.

But changes can be good. And we’re looking ahead to the future and what possibilities might lay ahead for us. Something good and grand can be just around the corner and that’s what we’re focusing on.

Happy Monday.
ULove

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What do I want for her?


What do you want for her?

I hated that question. I still hate the damn question. It takes me back to when she was born and a doctor on the night shift came in to talk to me and had said something to the effect “Hey these people (people with DS) work at Mc Donalds nowadays!” I need to be clear, my issue is not with the concept of working at Mc Donalds, either in maintenance or management or anywhere between. It was that the thought being expressed is “since we both *know* she’s never going to college, there’s always fast food.” Because sure, every brand new parent wants to have that goal for their kid in their head.

I still hate that question.

I’d sit in the IEP meetings with people who had no clue what my beliefs were, didn’t care really, didn’t understand how I believed that it was all a moot point. Someday soon, she would be ‘fixed’. Why bother? Why worry? I just had to make it past Armageddon. That’s all I cared about. What do I want for her? I want my daughter to make it past Armageddon.

Oh goals? What goals? Goals.

Now I here I sit and look at my 13 year old daughter, focusing on her behavior issues and the goals are too many to list and I know that I can’t do this alone. But I also have little confidence in the local district. I have little confidence in myself, really, to accomplish what seems to be the impossible.

For the record, I no longer believe there will be an Armageddon and I don’t think that my internal response towards the question of what do I want for her was typical of a person who believes that. That was my response. It was a hopeful response. One that came with this absolute faith in what I believed.

Here I am 8 years later, my faith in that Armageddon completely dismantled; the faith in myself takes a step forward and a step back, or sometimes three steps back. How do I feed that faith in myself that I can do this? How do I believe that I can accomplish the impossible? Supermom my ass. Get me through the coming winter without me losing it and I’ll consider adopting the moniker “supermom in training”. Until then, I am facing what seems to be the task of leaping skyscrapers and racing past speeding trains doomed to fall off a cliff only to save the one passenger inside: my kid.

I just read about the issues that come with a kid with DS just a few minutes ago, and I see scary similarities. Recognizing the panic that settles into my core before erupting in a nervous stomach, I make the mental list that I know needs to become a detailed printout to-do list with notes and links and business cards and “You Can Do It” stickers from the teachers store, some for me and some for her.

I feel like I need a spattering of fairy dust and a pair of wings. Forget SuperMom I’ll accept Tinkerbell badassery about now.

So, jeez oh peets what brought on this post? Another morning of battling with her to put clothes on so we could get her sister out the door for her classes. Physically making her move was about the only way to do it. Sucks. I feel like the worlds worst parent. But I can’t leave her home and I don’t have a person to watch her. And keeping us all home is not the answer.

I think school is the answer. Is it? I’m not sure if it’s the answer to one problem only to adopt another 10 problems with no answer. I go back and forth. Yes, I can be the ultimate flake when it comes trying to figure out what to do. There is no single answer for her or the problems we have with dealing with her. It’s too damn complicated. So I put school on the plate, and then I take it off. Then I just pour a cup of coffee and close my eyes and look at the laundry we amassed in ten minutes.

What do i do? I suppose it starts with opening a new doc page and start listing the goals that I have for her. Everything from interacting with others to making a pot of coffee. I think we should each get a sticker for the day.

~Meagan

 

Meagan

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The straight ‘poop’


Down Syndrome and Constipation

The two go hand in hand if only because of the low muscle tone which so many people with DS deal with. My not so educated but practical guess is that the low muscle tone in the trunk region makes it difficult for them to literally push the feces out. When it doesn’t come out it’s going to get backed up.

What happens when your kid gets impacted?

Hannah had been taking Miralax for 10 years and in the last year or two it didn’t seem like it had been working as well or we had a hard time getting the right dosage. We took a break from it thinking we would be okay with upping her natural fiber and such. Big Mistake. By mid-Sept she started to slow down in her eating and drinking habits, and by October we had her in the hospital, not once but twice.

The first time they said it was a UTI. The second time (yes, you read that right) they realized she was badly impacted. It was not just humiliating for her, but downright painful. Watching her go through a catheter and two enemas, and then a doctor physically removing the feces was heartbreaking. Total hours in the local ER that Sunday: 10.

So, we vowed that we’d rather work at keeping her on the loose side rather than ever let it get hard again. And considering the scripts for the meds the doc sent us home with, it was obvious he felt the same way. And we’ve definitely stayed true to our vow, despite multiple messes as she’s basically been learning how to get to the toilet on time and in the process has messed her pants more times than I can count now.

The Lesson I Learned

And just when I think I can’t possibly learn more about what it means to have a special kid, I learn something amazing. I realized the other night that even my own sense of compassion for her sometimes needs to be refilled. I was grumbling just enough for her to hear me about needing to get to the toilet on time. When I looked up: yeah, I made my kid cry. Wow, what an epic moment in my life. Just when she needed me most to be loving and compassionate and a damn mom, I let her down.

Since then, I’ve really watched myself to make sure I’m not focusing on the wrong, stupid thing. Sure, I get to clean it up, but I’d rather, boy would I rather, be the one cleaning it up. The blow to a person’s dignity when someone has to help them with such a personal and private task is huge.

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Breaking your kid’s heart when they need you = parent fail.
Learning from the moment = score!

Life as a parent with a special kid is hard but I have to tell you, I learn more about what it means to give from the heart than I ever could have imagined.

Posted in Kids, Medically Speaking, Parenting | Tagged , , | 2 Comments

Special Needs Sibs


The Special Needs Sibling (and babies)

So, yeah it’s been a long time, but my excuse is that I’ve had a baby. What’s your excuse? Oh, right, you don’t need one. Wow has there been a sharp learning curve the last many, many moons. Catching you up to speed, I had another beautiful baby girl this last spring, she’s an amazingly spirited child. Lots of energy, keeps this ol’ lady on her toes. Yes, the girls love her, but the truth is, Hannah has had a tough time getting used to her. As with most other babies, this one came with a loud voice and that loud voice stresses Hannah out so badly that at times she simply melts down at the sight of her sister.

I would LOVE to play the “well this is what I’ve learned and how to deal with it” card, but I can’t. In fact, my most human moment came the other day when I sat with baby in the backyard and looked at her and kissed her and told her “I love you, but I honestly feel like I’ve screwed up Hannah’s life by having you.” Isn’t that horrible!? What mother says that? I told my husband that and he laughed at me and said, “a little late for that.” Men. So, no answers. But learned what has kicked up a recent cycle of crying in the car for lil Tuesday. Now comes the difficult task of getting Hannah to not hate driving with us all together.

So, I guess my big goals for now, at least until the bright and shiny Universe that has the sense of humor of Mad magazine throws an enormous monkey wrench into our lives, are to find ways to help her cope with the stress, get her diet back on track and get her back into OT/PT and Speech (at Beaumont!!). 

The funny thing is, I have only briefly considered using aromatherapy, but think I’m going to aim for it. Maybe lavender. I wonder how I can use my lavender plants for her? Hm, maybe a big ol’ rice sock with lavender. …….

Well, my apologies for not being here. I have had a lot to think about. I hope that over time I can express these things in bits and pieces. As for the business itself….. idk what’s going to happen. I wish I did. It’s in a deep slumber, we have shirts in stock but rarely get orders, okay, well never. And that’s okay. We dream of what we’d like to do with the poetry and stories and characters. But family first. And if it’s meant to be, it’ll be.

Best wishes

~Meagan

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Entertainment: Movies about people with special needs


Some of our favorite movies are those that have a story line based on a character with a special need of some sort. Seems like winter is a great time to grab a hot cuppa something and curl up to watch a great movie.

SO

Here is our top ten list of movies we think rank at the highest:

10) Benny and Joon: Mental instability manifesting as pyromania

9) The Other Sister: Mentally challenged/delay

8 ) As Good As It Gets: OCD

7) Of Mice and Men: Mentally challenged/delay

6) Shine: Schizophrenia

5) A Beautiful Mind: Schizophrenia

4) Radio: Mentally challenged/delay.

3)  The Eighth Day: French/English subtitles; Down Syndrome

2) A Beautiful Mind: Schizophrenia

1) I Am Sam: Mentally challenged/delay

 

xoxo
ULove

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Make an Imagine Peace Wish Tree


Scrolling through our fave web pages I checked in on Yoko’s Imagine Peace site and found a fab idea to make an Imagine Peace Wish Tree.
The story is, as I understand it, the first Wish Tree happened in 1981 after John had passed away.  Since then she has collected over 400,000  wishes that will be put in a capsule and buried around the Imagine Peace Tower in Finland.

Love, love, love the basic concept of making an Imagine Peace Wish Tree.

Check out the instructions on Yoko’s site, www.imaginepeacetower/yoko-onos-wish-tree.com

xoxo
Ulove

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