I’m a budding disability advocate, proof that dynamite comes in small packages, as I’m only 5’4″. I’m a bookworm, a writer, a Christ-follower, and the holder of four college degrees. I’m a freelance writer and a published inspirational fiction author. I love singing and theater. I’m a confirmed chocoholic. A year ago, I was finally adopted by a beautiful calico cat named Clarice.
Favorite movies:
- Sense and Sensibility
- Jane Eyre
- Ever After
- You’ve Got Mail
- All musicals and Hallmark films
- The Help
Favorite shows:
- Touched by an Angel
- Sue Thomas, F.B. Eye
- Monk
- Mystery Diagnosis
- Supernanny
- My Strange Addiction (or anything psychological)
- Full House
- Family Matters
- Punky Brewster
Favorite music:
- Point of Grace
- Mary Mary
- Mandisa
- Avalon
- Rebecca St. James
- Show tunes
- Celtic Woman
- Reba McEntire
- Shania Twain
- Martina McBride
- Manheim Steamroller
- Disney
- Nicole C. Mullen
- Classical
- Francesca Battistelli
- Choirs on CD
Favorite Authors:
1. Susan May Warren
2. Julie Lessman
3. Julie Klassen
4. Patti Lacy
5. Jane Austen
And many more…
If you want to tickle my taste buds, they love Italian, Chinese, Greek, Mexican, and CHOCOLATE. I never drink coffee, except in mocha shakes. And I love hot cocoa, especially peppermint and salted caramel.
I have a love-hate relationship with exercise, but especially like Zumba, and jogging to my favorite music.
If you want to drive me crazy:
- Move me to a climate where it never gets below 75
- Use bad grammar
- Swear
- Play your music or video games too loud
- Turn up your nose when I admit I hate cooked veggies (I much prefer salad and the “exotics,” like stir fry, peppers, onions, and so forth)
- Ask me to kiss your yappy little dog (NOT a dog person, people)
- INSIST PEOPLE WITH DISABILITIES ARE WHINERS.
And, oh, yeah, I know #7 from experience because I have a mild form of cerebral palsy. But that’s hardly important, is it? š
IndependenceChick's Nest 
You need to fill in your about me! (This is Tori, btw.)
There should be a blurb under the posts. š
Oh, yeah. But you can only see when you click on each specific post. You should just put it in the about me instead that way you don’t have to keep writing it up.
It’s here if you want to check it out. Thanks, everyone, for reading the blog (all 1 of you). š
Welcome, welcome, welcome!
Thank you, Ms. Bugly. I have checked out your blog and videos as well; they’re pretty awesome!
Thanks!
Iām a mother leading a change.org campaign for better early educational opportunities for young gifted children.
Almost any adult can relate to how it feels to have to sit through a conference, training session, or class that covers material that you already know. Now imagine you are four years old. And you have to do this every day for at least two years of your life. That is what approximately six percent of children (those who are academically gifted) starting school throughout the US will face this fall, unless a parent decides to home school them or can afford to pay for private school.
There are early programs available for children with disabilities and for gifted children at poverty level or below. Parents who have the funds can pay for each child to attend school, or home school their children, but not everyone can do this. I have talked to other parents with similar issues and they have shared stories full of frustration and struggle for themselves, their children, and for educators whose hands are tied and cannot offer these children what they need during at least the first couple of years of school.
These gifted children are people and have educational needs as much as other children in the United States. Here is a link to my campaign:
http://www.change.org/petitions/provide-adequate-education-options-for-young-gifted-children
I wanted to ask if it would be possible for you to share the link with your blog readers and with your followers on social media. Your signature would be much appreciated as well.
Thanks for your time!
I’d love to help; believe me, I understand that public education, while it tries its best (in most cases, anyway) has pitfalls. Yes, we do need more programs out there like the ones you describe.
Also, I’d like to respond to your comment with an insight of my own: the part about being four years old and doing the same thing over and over, just because someone else has decided that you must learn and practice it in order to be “normal” or reach a certain goal, is what many children with disabilities face in therapy. I’m not saying all therapy is bad, but I do think there are more natural ways to teach some of these therapeutic tasks, and that some of these tasks need to be reassessed for necessity. I mean, why continue to push a person with a disability to, say, write by hand when his/her writing is illegible, and he/she can type just fine? Why continue to insist a child learn how to tie shoes when in actuality, the grown-up, business world you want him or her to go into someday usually considers lace-up sneakers a dress code violation? What are people thinking? We want people with disabilities to fit inside this prescribed box–yet we get to decide to ignore the box whenever we feel like it.
Anyway, thanks so much. Will add your link.
I completely agree on therapy – children need to learn how to do what they need to do in a way that works for them, a creative way that isn’t learning things just for the sake of checking off a box, but rather what will further them in the world. Thanks for the link, and signature if you were able to sign. I hope enough of us say something to make a difference in these children’s lives.
Exactly; learning of any kind, but especially learning for kids with disabilities, needs to be NATURAL. (Sorry for the all caps; I’m not shouting. I just don’t have italics). If we plunk a child down in a therapy room, which is usually part of a hospital or rehabilitation center, tell her, “Okay, practice buttoning these buttons,” then swoop in to correct her, scold her for getting frustrated, or make her do it over and over even after she’s done it correctly, she will learn:
1. I am not okay the way I am because I cannot do this. 2. My value is connected to how well I button buttons. 3. I can’t get it right, so why even try? 4. There’s something wrong with me/I am “broken” or “sick”. Otherwise, why would I be here when I could be out with my friends, playing? 5. If I do not do this right, people will be mad at me and I’ll never be able to dress myself (because children in therapy are often presented with all-or-nothing consequences).
I say, it’s a bunch of baloney. Your child will learn to dress herself with or without buttons, and there are ways to modify buttons. (For example, I know a seamstress who I paid to alter my jeans for this reason). And just because your child can’t button doesn’t mean her whole future is down the drain. Try this instead: let her get dressed at home, and encourage her to try the button. If she can do it, great! If not, say, “No big deal; want to wear something else?” Or, if she insists on wearing that item, it’s not gonna kill you to help her button it, or say, “Why don’t you try, and then if you can’t get it, I’ll help?”
It never ceases to amaze me how much easier living with a disability could be if everyone else would stop looking at us with all-or-nothing attitudes and accusing us of taking the easy way out.
Hey there Independencechick š Im Joseph. I want to thank you so much for writing this wonderful blog! It’s been such a huge encouragement to me as I was feeling pretty lonely today because of the severe isolation. I have spastic cerebral palsy and live in a Section 8 elderly home. I hardly get out and I’m limited in a lot of ways. And so it was wonderful for me to see that someone else could put into words the very things that I’ve been feeling in my heart for so long. It’s tough and I wish that someone as a kid would have said to me Joseph when you are an adult, (I’m now 24 years old) it’s going to be really tough to work through life. I have had to learn on my own how to overcome these challenges. I do not have the support and love of a family like so many people with disabilities do so I am on my own but I have the Lord š I don’t know what to do, and I’m frustrated because so many outside voices hastily label me lazy and inadequate. It’s infuriating and it’s heartbreaking. If they could take a few steps in my shoes they would understand. On top of all this I don’t get to make very many friends, because there is such a cultural stigmatism and people tend to just avoid me all together. Although I’m thankful for a couple friends I do have. I can’t do normal jobs but I can sing š and that is what I want to do with my life become a singer. It’s been my dream since I was a little kid. Do you have any advice as to what I should do next? Obviously don’t even get me started on the whole problem with Social Security LOL I can’t do much on that income and they’ve already slammed me with $6,000 in so-called overages for trying to get a 20 hour a week job lol.( I had worked my butt off for 7 months at a convenience store and got slammed with that, so it was pretty much for nothing) so now I’m at a standstill it seems. And I’m just waiting.
Dear Joseph,
I cannot tell you how happy I am to be able to bless someone in such a way. I have spastic CP as well, and have gone through (am going through) many of the struggles you describe. SSI punishing you for wanting to work is a big one–I don’t have a 40-hour/week job, but my hours vary. If I make too much, my benefits get cut and I *still* have to pay taxes (and how messed up is that)? I also feel severe isolation because of where I live (very rural, not a lot of options for jobs or leisure). I do have friends but most fall under “warm acquaintance” because, as you said, they are not willing to look past the stigma/their own fear of not being able to provide what I need.
I do have a family and am highly blessed in that regard; I have Jesus, also. š I’m hoping He will begin opening some more doors for me soon, as I know from experience I cannot force them open.
Since I’m not a singer, I don’t have career-specific advice, but here’s what I would do:
1. Write to/call your Congressman or any other relevant govt. officials. HOUND THEM. They need to know that the current state of SSI punishes persons with disabilities and does not help them. Change won’t come right away but I believe it will if we press hard enough. You earned the money you made at that convenience store and you deserve to keep it.
2. Are there college-level singing/music programs you can get into? If yes, I’d say start looking at them and choose one. Colleges have Disability Services that are required by law to provide the modifications students need. I don’t know what those are for you, but start investigating what’s available. I don’t know what your living arrangements are like, but if you need to relocate/get an assistant/whatever, seek support from your friends, church, any other avenues you have. This may not be what “job services” are willing to do–in my experience they’re not willing to do anything if you don’t fit into the “bag groceries” box. But there are intelligent and caring counselors out there who can help.
3. Take singing opportunities that are available now. If you have never taken professional voice lessons, you should start; if you already do, keep it up. Ask for opportunities to sing at your church and other local organizations, and keep asking until they hear you. It boggles my mind that even Christians often believe the disability stigma; the church at large needs a wake-up call.
4. Pray, search, seek, knock, and don’t say “no.” In other words, if the opportunity for your dream job is a few states away, don’t immediately shut it down because relocating seems impossible from everybody else’s perspective. Say, “I want to do this. Who is willing to help me make it happen?” Remember too that the doors God opens, no one can shut. He created you, me, and others with disabilities, and I don’t believe He meant us to simply sit and watch everybody else do things. There is a time to sit and a time to act; I don’t know what timetable God is on with you but I know He has a better plan than what you are experiencing.
Waiting and feeling frustrated with you, but holding on to faith as tightly as you are.
Blessings from the Nest. š
Hi, my name is Marie and I work for a board of developmental disabilities. I was reading one of your posts and hoped to get some help or thoughts with an advocacy project. Is there an email where i can reach you? Thanks!
You can reach me at stephanie.wordwoman@gmail.com