United Brachial Plexus Network, Inc. • What It's Like Living with a Disability in the Family - Page 3
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Re: What It's Like Living with a Disability in the Family

Posted: Sat Jul 02, 2005 9:45 am
by Angela Butterfly
Priscilla, I don't have a clue, what it would cost now. The concept of this keyboard was BRAND new when I bought it.....and I am sure it has come down in price by now.

At the bottum of the Comfort Keyboard home page, it tells you to call a phone # to find a dealer in your area. I bought mine all over the phone....never went to a showroom. I researched it and by the pictures and talking over the phone, to have them describe it....I knew it would work for my daughter, since she could not pronate.

In Illinois we also have an Illinois Assistive Technology Project, where you can try out products, and even take them home on loan. They did not have this keyboard, however when I called them the Director said they would buy it so we could try it out. Again, all this was done over the phone, and the keyboard sent through UPS. I got to keep it for a month or two, shipped it back, to the disability showroom, and bought one for my Jill.

Re: What It's Like Living with a Disability in the Family

Posted: Sat Jul 02, 2005 11:12 am
by Carolyn J
Dear "Angel Angela",...[I sure want to call you Angie for some reason!.."seniorsabbatical??"]....these sites you are finding are truly a priceless resource for all BPI's & parents too. It sure saves all of us time,not to even mention our energy which is always OVERSPENT anyway!
God bless you & keep 'em coming.....someone shoud get you a PC of your own for year round use! I nominate you Resource Peruser/Finder for UBPN!!....
~Hugs,Carolyn J
Did you say you're coming to Camp in Sept.?? I forgot..

Re: What It's Like Living with a Disability in the Family

Posted: Sat Jul 02, 2005 11:33 am
by Angela Butterfly
Dear Carolyn......A lot of people call me Angie, even tho I ALWAYS introduce myself and Angela....My IRISH CATHOLIC mother always called my ANGELA. Also, I like to JOKE, that I was my mothers LITTLE ANGEL, ......until I hit puberty.

Now as far as all the info. You must remember I have lived with "disability issues" since the year of my birth, 1953. I have an older brother also injured at birth. And as you read above in this post, HE became MY responsibility when I was only age 18.

Actually, my mom was sick a lot and I had to take care of my family as an adult woman would since I was age 10. Even after leaving home at age 18, I always took "vacation time" off work and went home to care for her when she was "real sick" until her death in 1980. SIGH.....finally at around age 40, I started learning how to take care of ME.

Re: What It's Like Living with a Disability in the Family

Posted: Sat Jul 02, 2005 11:41 am
by Angela Butterfly
Oops.....I forgot your question about CAMP. NO I am not going. And since my Daughters OBPI issue is a MUTE point to my daughter, she isn't coming either. Actually CAMP hits at a bad time with COLLEGE and all.

REMEMBER I have all 3 in college, and am a single mom, homeowner.....with major sewer issues this year (clay tile had to be replaced with PVC) to pay for and my RE taxes are soon due. THANKS to our President......much of the work I do has been OUTSOURCED........so I am a laid off governmental worker. I am currently taking classes at a Junior College, to try and get a BETTER JOB.

Re: What It's Like Living with a Disability in the Family

Posted: Sun Jul 03, 2005 10:15 am
by Carolyn J
Hi Angie, Thanks for sharing.... now I know why you hit the spot with me as I read all of your posts going back to when I 1st foun UBPN in 2003....Being LOBPI I have a 34 yr old son that was born with serve to mild disabilities most corrected by surgies done before age 18. Yes one does gather alot of information and skills along the way......
I hope you consider going into some kind of social work/Human services position. All parents need an experienced,compassionate INTUITIVELY understanding person like you "across a cold sterile desk" to work with...or PT/OT?....
~Hugs,Carolyn J

Re: What It's Like Living with a Disability in the Family

Posted: Sun Jul 03, 2005 6:15 pm
by Angela Butterfly
Carolyn,
I actually did seriously look into getting a Certified Occupational Therapist Assistant (COTA) degree, in recent years, but decided against it.
By the time Jill graduated, and I could move to where there was a Junior College that offered COTA....I liked the job I was doing (somewhat business related, but no real tuff stuff) and had thought it would work out....but it didn't.
Also, it is really best to do something because IT is what you want to do...not because running away from something else.
I have always liked business.....but got SOOOOOO burnt out on it when I opened, owned & operated my business, thus having to both live and work with my Abusive Husband, in order to KEEP Group Health Insurance.
One of the classes I am taking now is EXCEL computer, to see if I can get back to what I used to love, without it making me ill.

Re: What It's Like Living with a Disability in the Family

Posted: Sun Jul 03, 2005 7:28 pm
by Carolyn J
Angie, good luck in going back to something you love re job....BTW,we also have other "things/person-related",in common....Keep on keeping on & feel free to email me as I will you too...
Oh,yeah, HAPPY 4th everyone!
~Hugs,Carolyn J

Re: What It's Like Living with a Disability in the Family

Posted: Mon Sep 04, 2006 10:49 am
by Carolyn J
Bump up for new UBPN Families. The Speech on PAGE 1, written by a Sibling of a sister with OBPI is especially helpful to insight of our lives.
Hugs,
Carolyn J
Adult LOBPI


Message was edited by: Carolyn J

Re: What It's Like Living with a Disability in the Family

Posted: Tue Jun 19, 2007 8:30 pm
by brandonsmom
Bumping up for ANGELABUTTERFLY-so that Maggies mom can see this....really neat !!!

GAYLE

Re: What It's Like Living with a Disability in the Family

Posted: Wed Jun 20, 2007 1:23 am
by mommieinneed
That story is awesome. Very neat indeed. Thank you