Don't deny the disability, okay? If I had known in 1975 what I know now
about my first career choice, I never would've gotten into it. I had
rose-colored glasses on, and they got knocked off in 1986 and consecutive
years. My parents told me the same thing as what you believe, but sometimes
it takes s paradigm shift of society to create the reality we want for
children with diabilities.
-----Original Message-----
From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of
Sarah Haynes
Sent: Friday, September 17, 2010 7:18 AM
To: [log in to unmask]
Subject:
thank you for the vote of confidence. I landed the best job of my hotel
accounting career. they know about my situation and that i may have to
leave them, and yet still hired me. I'm sending every penny back to support
katrina. i'm just having a hard time not sinking into that depression hole
during this long wait.
Happily with a nice guilt ridden letter, the congressman is putting huge
pressure on the montreal consulate, as well as got us a pro bono lawyer who
filed the paperwork for us. so its just a waiting game now. the chances of
them denying me with a war vet husband and an american born daughter with cp
are small.
I do have a question for all of you though. I worry that I'll focus too
much on the cp and not enough on raising a healthy happy girl. All I want
is for her to be happy, and beleive she can acomplish anything she can. I
don't want her to think she's disabled, because she's already proven she's
not. Any tips?
Sarah
--- On Thu, 9/16/10, Tamar Raine <[log in to unmask]> wrote:
> From: Tamar Raine <[log in to unmask]>
> Subject:
> To: [log in to unmask]
> Date: Thursday, September 16, 2010, 7:34 PM
> Sarah,
> You're doing awesomely in taking on the challenges. Things
> will soon be right
> again.
>
>
> Thanks,
> Tamar
>
> ~~~~~~~~
> When the power of love overcomes the love of power,
>
> the world will come to know peace.
> Check out my new blog!
>
> http://disabilityrightspetspoetryart.blogspot.com/
> [log in to unmask]
> http://www.zazzle.com/TamarMag*
>
>
>
>
>
> ________________________________
> From: Laura Mcintyre <[log in to unmask]>
> To: [log in to unmask]
> Sent: Thu, September 16, 2010 8:51:42 PM
> Subject:
>
> Thank you so much for sharing your story with me. I
> am so sorry to hear about
> your immigration problems and your difficulties accessing
> medical care and
> therapies. I can't imagine how much you miss her and
> how frustrated you must be
>
> by now. It sounds like she transitioned well into
> physical therapy and braces.
>
> She sounds like a very innovative little girl! That is
> wonderful that you have
> started to teach her sign language. That's not
> something I had thought of
> before, but I think I may start that. After I do a
> little homework though,
> lol. I wish you the very best of luck with your
> appeal. Do you have to have a
> hearing then? Do you have one scheduled yet? Is
> there anything I could do to
> help? I don't know if a letter or email to someone
> would help in any way, but
> if so I would be willing to send either. Just let me
> know. Thanks again,
>
> Laura
>
>
>
>
> ________________________________
> From: Sarah Haynes <[log in to unmask]>
> To: [log in to unmask]
> Sent: Thu, September 16, 2010 4:20:15 PM
> Subject:
>
> Its no problem, although my information is a little dated
> I'm afraid. Jon tells
>
> me she's doing wonderfully. Its a long story, lol.
>
> When I was pregnant I had gestational diabetes and
> preeclampsia. It was
> fustrating because I did everything the doctors told me
> from what to eat to full
>
> bed rest. We had alot of outside stress like my job
> trying to intentionally
> fire me for being pregnant and our insurance backing out on
> us when i was 8
> months along. It was fustrating because i tried to do
> everything the doctors
> said and still got steadily worse. I was in the
> hospital alot. I had
> contractions starting at 5 months, my blood pressure was
> high, I was in again at
>
> 7 months due to fever and dehydration. by the time i
> was 8 months i was in
> every week getting a stress test done on the baby.
> They pushed it as long as
> they could, trying to give her as much time as they could
> in the womb. But on
> new years eve i was sent to the hospital and told that if i
> got even a blood
> pressure point worse they would call the doctors in off
> their holidays. But I
> held and she was born at 12.39pm on
> january 2nd. My blood pressure got so high i wasn't
> allowed to hold her for the
>
> first twenty four hours because they were afraid i was
> going to seize. the
> night nurses let me anyways, with supervision.
>
> We have no family around us. and none of our friends
> have kids. So we're kind
> of on our own for the most part. We did start getting
> into crowds of friends
> who do have kids after the first year, lol.
>
> Katrina has a problem with her entire right side.
> When she started crawling at
> nine months I noticed how she would always lean, and try to
> avoid using that
> side. I mentioned it to the doctor and was told as
> long as she was crawling
> she's fine. I mentioned it again the next time we
> went to the doctor because
> she couldn't seem to do things like play patty cake.
> the whole clapping thing
> seemed beyond her. She started walking at 13 months
> but all she could seem to
> do with her right hand was hold it open. SHe tottered
> alot, always to the
> right. The breaking point was when she slipped in the
> tub. there wasn't enough
>
> water there to be a real danger, but she simply couldn't
> use her right arm to
> push herself up. in the time it took me to jump up
> she had rolled over and used
>
> her left hand.
>
> That was sorta my breaking point. Once again the
> doctor said she was fine so I
> went to a non-profit group that was recommended. They
> came out that week to
> evaluate her. Amanda was very nice, and after a while
> said she had to do two
> evaluations, one for katrina's right and one for the
> left. he left was on par,
> but her right side was definately deficient. Upon
> doing a simple stretching
> exercise with katrina she said there was definately lack of
> muscle tone, and
> signs of stiffening. She wanted katrina to see a
> neurologist, but our family
> doctor had to sign off on it.
>
>
> Happily when we went to him he basically said that I was
> with her more than he
> was and if i fent it necessary to look further in he would
> support it. Amanda
> had us into a neurologist that week. The neurologist
> took one look at katrina,
> did some simple stretches and said she was sure it was CP,
> and wanted a MRI. We
>
> had one the next week, as well as another neurologist
> appointment. Thats when
> they confirmed it. She said ti was mild, and we were
> catching it in the early
> stages. Her hopes were by the time Katrina went to
> school it would be barely
> noticable.
>
>
> She was in physical therapy and occupational therapy.
> WE had to use a special
> brace for her right hand. her thumb was stiffened in
> one position, and she
> couldn't turn her wrist. They had us talk to,
> honestly i just called him the
> sports doctor. He talked aobut using botox in her wrist,
> but as a last stage
> measure. So we stuck with using the brace at night,
> daily stretching of her
> hand, and weekly therapy. She still can't turn her
> wrist but her thumb now
> works ok.
>
>
> We also had to get a foot brace to stop her from walking on
> her toes. She
> didn't mind it at all. In fact she would bring it
> with her shoes to me when she
>
> wanted to go out.
>
>
> Of course then the fun happened with immigration. I'm
> canadian married to an
> american. I went to montreal to get my greencard,
> intending to be away from
> home for a week. instead i got told that we did the
> paperwork wrong i'm banned
> for ten years. after the inital panic attack i made
> my calls back home. I got
> Katrina and we went to stay with my mother in
> newfoundland. IT was wonderful to
>
> see my family. However no children's hospital.
> There was concern with her
> swallowing. and needing a new swallow study
> done.
>
>
> Jon got his income tax done and we had some money, so the
> plan was for katrina
> and i to fly back to vancouver, closer to him. get an
> appartment. once we got
> her medical taken care of id get a job. Dontcha love
> plans. Well we couldnt'
> get an appartment unless I had a job, i couldnt' get a job
> until katrina was
> seen to. Thus we ended up in a homeless
> shelter. I took katrina to a dozen
> evaluations and she got her swallowing study done.
> she can swallow, she is just
>
> not talking. Rather she is trying, alot, but cannot
> seem to form words or some
> base sounds. She is very very smart and just uses
> other ways to comunicate
> instead of talking. such as if she wants to go
> outside she'll take your hand
> and lead you to the door. if she's thirsty she brings
> you her sippy cup. We
> arrived in Vancouver in Feb, by May i got a letter saying
> she would begin intake
>
> maybe in 6-8 weeks. Mind you all this started in
> december and she was starting
> to regress with her
> hand, despite my constant efforts.
>
> So I made a heart breaking decision and sent her back to be
> with her daddy. He
> works graveyard shift security. He's a warvet working
> on getting VA benifits.
> So she's staying with friends while he works, and he takes
> her every second he
> gets. She isn't in physical therapy yet, still
> waiting. She doesn't need
> occupational any more. Her speech was evaluated at 18
> months, but she is
> progressing, mind you she's 30 months old. In the
> shelter we started sign
> language, and she's picked that up very quickly. she
> now knows more words in
> sign language than she can speak. Shes on the waiting
> list for speach therapy,
> and to see a hemitologist. They told me it was blood
> clot in the brain that
> caused her to have a stroke in the womb, so they want her
> to see a hemotologist
> to make sure blood clots are not going to be an
> issue. Unfortunately random
> blood clotting is in my family. My uncle almost died
> due to one.
>
>
> Right now we're evaluating where we are in the
> appeal. If its going to take
> longer we're going to send Katrina to be iwth his
> sister. We live in WA and she
>
> is in PA. However she used to be a kindergarden teacher and
> has connections with
>
> the right programs to help katrina. As well as has
> three kids, one only a year
> older than katrina. I am praying that the laywer's
> hopes are right and we'll
> hear within the next week or so. I desperately want
> to be home for halloween.
> I just wnat to hold her and know she is okay.
>
>
> As it stands now she is willingly trying to use her right
> hand before using the
> left. She can walk and run but tends to fall or run
> into alot of things. She
> loves to climb. The doctors said she has some spacial
> orientation issues, but
> gave us activities to help. She can say up to five
> words, sign almost ten and
> is very good at non verbal. She is very very good at
> problem solving, to the
> point of amazing a child neurologist in vancouver. My
> worry is every time we
> get on top of something, something hits us from the side
> that we had never
> considered. like watching her for seizures when I
> need to be conserned with
> blood clots. Or focusing on her hands when her speech
> falls behind.
>
> Sorry for the long story, and spelling mistakes. But
> there it all is. I don't
> know how two dark eyed, haired people got a blue eyed
> blond, but she is the best
>
> thing in our lives. She is always happy and so so
> smart. I miss her terribly.
>
> Sarah
>
> --- On Thu, 9/16/10, Laura Mcintyre <[log in to unmask]>
> wrote:
>
> > From: Laura Mcintyre <[log in to unmask]>
> > Subject:
> > To: [log in to unmask]
> > Date: Thursday, September 16, 2010, 4:02 AM
> > Hi Sarah. I'd like to ask you a few
> > questions, if I may concerning your
> > daughter. Feel free to tell me no, if you don't
> care to
> > answer. How does your
> > daughter's CP affect her? How was she
> diagnosed? Was
> > she premature or was
> > there other causes? What kind of therapies have
> you or
> > are you doing now.
> > Sorry, I know that's quite a few.
> >
> >
> >
> >
> >
> > ________________________________
> > From: Sarah Haynes <[log in to unmask]>
> > To: [log in to unmask]
> > Sent: Mon, September 13, 2010 3:19:03 PM
> > Subject:
> >
> > Hi Laura,
> >
> > I too am a parent of a child with cp. my
> daughter just
> > hit 30 months, although
> > she is not letting it slow her down in any way.
> She was
> > diagnosed when she was
> > 13 months.
> >
> >
> > Sarah
> >
> > --- On Mon, 9/13/10, Meir Weiss <[log in to unmask]>
> > wrote:
> >
> > > From: Meir Weiss <[log in to unmask]>
> > > Subject:
> > > To: [log in to unmask]
> > > Date: Monday, September 13, 2010, 4:48 AM
> > > http://www.cpparent.org/
> > >
> > > -----Original Message-----
> > > From: Cerebral Palsy List [mailto:[log in to unmask]]
> > > On Behalf Of
> > > Kathleen Salkin
> > > Sent: Monday, September 13, 2010 12:28 PM
> > > To: [log in to unmask]
> > > Subject:
> > >
> > > Hello, Laura,
> > >
> > > I'm Kat, list mum and a CP living and working in
> > NC.
> > > Feel free to post
> > > here. Most of us members are CP adults but
> there
> > are
> > > quite a few parents of
> > > CP kids here, too.
> > >
> > > There's a "sister" group for parents of CP kids
> which
> > I can
> > > never remember
> > > the details for, but I'm sure as always someone
> here
> > will
> > > be happy to point
> > > the way.
> > >
> > > Kat
> > >
> > > On Mon, Sep 13, 2010 at 12:13 PM, Laura Mcintyre
> > > <[log in to unmask]>wrote:
> > >
> > > -----------------------
> > >
> > > To change your mail settings or leave the
> C-PALSY
> > list, go
> > > here:
> > >
> > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
> > >
> > >
> > > __________ Information from ESET NOD32
> Antivirus,
> > version
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> > >
> > > The message was checked by ESET NOD32 Antivirus.
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> > >
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> > > The message was checked by ESET NOD32 Antivirus.
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> > > -----------------------
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> > >
> >
> >
> >
> >
> > -----------------------
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> >
> >
> >
> >
> >
> > -----------------------
> >
> > To change your mail settings or leave the C-PALSY
> list, go
> > here:
> >
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>
>
>
>
> -----------------------
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> To change your mail settings or leave the C-PALSY list, go
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>
>
>
>
> -----------------------
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>
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