What It's Like Living with a Disability in the Family
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Angela Butterfly
- Posts: 483
- Joined: Fri Jul 18, 2003 4:24 pm
Re: What It's Like Living with a Disability in the Family
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.
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.
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: What It's Like Living with a Disability in the Family
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..
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..
Carolyn J
Adult LOBPI
Adult LOBPI
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Angela Butterfly
- Posts: 483
- Joined: Fri Jul 18, 2003 4:24 pm
Re: What It's Like Living with a Disability in the Family
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.
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.
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Angela Butterfly
- Posts: 483
- Joined: Fri Jul 18, 2003 4:24 pm
Re: What It's Like Living with a Disability in the Family
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.
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.
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: What It's Like Living with a Disability in the Family
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
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
Carolyn J
Adult LOBPI
Adult LOBPI
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Angela Butterfly
- Posts: 483
- Joined: Fri Jul 18, 2003 4:24 pm
Re: What It's Like Living with a Disability in the Family
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.
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.
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: What It's Like Living with a Disability in the Family
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
Oh,yeah, HAPPY 4th everyone!
~Hugs,Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: What It's Like Living with a Disability in the Family
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
Hugs,
Carolyn J
Adult LOBPI
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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brandonsmom
- Posts: 1401
- Joined: Mon Nov 22, 2004 4:43 pm
Re: What It's Like Living with a Disability in the Family
Bumping up for ANGELABUTTERFLY-so that Maggies mom can see this....really neat !!!
GAYLE
GAYLE
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mommieinneed
- Posts: 181
- Joined: Thu Jun 14, 2007 6:19 pm
Re: What It's Like Living with a Disability in the Family
That story is awesome. Very neat indeed. Thank you
