This
post is actually three posts that I have posted on different
subreddits for people with disabilities. However, I have not found
support there. Maybe I can get support here?
I wonder if it's me demanding too much , or if my daughter may be depressed.
To be clear : We are not from US or UK
My
daughter is 27 years old, she has a neurological disability from
birth as a result of prematurity. (Cerebral Palsy) She has quite
severe paresis of the legs, mild paresis of the hands, mild speech
disorder and sensory integration disorder. Intellectually, everything
is fine. Outside the home, she gets around with a walker, while at
home she gets around with furniture. However, the thing that worries
me most about her is her lack of desire to live a normal life. After
high school, her disabled peers go on to college or post-secondary
education. My daughter failed all possible approaches to her high
school diploma despite tutoring. She was never an outstanding student,
especially in science (people with her condition mainly have problems
with science and spatial vision). She often had some of the lowest
grades in class . She got into high school on appeal, because no
technical or vocational schools in the area wanted a disabled student.
In high school she also ended up in a class with extensions in
science, because there was the only inclusive class there and I wanted
my daughter to have a supportive teacher. Then her learning problems
got even worse. Talks with the school psychologist who explained to
her that due to her condition she should study better than others
because she has more time only made her more discouraged. She doesn't
want to go to any job either, turning down all possible internships.
Her only income is a disability pension. She says she doesn't feel the
need for money, and that's a fact, because the pension gives all of
it back to me. She also doesn't seem to understand social conventions.
She often doesn't know how to sustain a conversation other than with
half-words. Well, unless she talks about her passions, then the
conversation takes the shape of monologues. For her age she is overly
emotional, anything can discharge a lot of stress, despair as well as a
burst of joy, but she is neither loud nor aggressive. She has also
always been unable to name her emotions, or to read the emotions of
others or sympathize with other people. She only remembers others when
she needs something. Her only acquaintances are two rehabilitation
campers and a girl with the same disability she met online. A few
years ago, she became very interested in her own rehabilitation, which
helped her get out of her wheelchair four years ago. She can talk
non-stop about rehabilitation, neurology or her own brain damage. She
also intensively has rehabilitation. As far as I know, these contacts
are irregular as well, and she speaks up when she feels the need to do
so (e.g. to explore more about neurology or her other passion, Japan)
she has a rather teenage style of dressing, tying her hair in two
ponytails or braids. Also, she reads books mainly for teenage girls.
She boasted to me that she is now writing a detective story about a
disabled teenager herself on the Internet. She follows instructions
nicely, but lacks initiative in herself. She could live in a mess
until I bring it to her attention to clean up. Any change in her
strict schedule causes her to freak out or cry, no matter what the
change is about. Outside of the aforementioned social interactions, I
guess social relationships could be non-existent. At family gatherings,
she doesn't even pretend to listen but stares at the phone, the wall
and does some discreet waving of hands under the table, sometimes
repeating phrases she has heard.
What
to do? I am very worried about her future. Especially with her own
siblings avoiding her according to them she is strange and shows no
initiative in her relationship with them. They also said that they will
not take care of her in the future....
2.
For
the record: We are from Eastern Europe (I don't want to give the
exact name of the country) and the disability pension, converted, is
about $365.**** a month. This is not enough to support herself, so I'm
worried about her future.
As for
my English, I am writing here with the help of an advanced online
translator, so my level of English in the post may differ from that in
the comments.
As for my
daughter's future, I asked her what she would possibly like to become
by profession. At the suggestion of something related to neurology, she
denied it. She said she is only interested in her disability to
understand herself and to walk better. She also says she doesn't
understand how other people can enjoy helping others, the same as
giving someone gifts. She says she would rather receive gifts and get
help than help or give something to others.
And
as for the problem: I told you yesterday that Diana is close with her
physiotherapists from her camps. There are two of them, they are a
engaged couple. They met with my daughter five years ago. She is my
daughter's age, while he is not much older. It is thanks to them that my
daughter got up from her wheelchair and now walks by a walker and
furniture . It was also from them that she learned more and more about
neurology and her own rehabilitation. Together they also share a
passion for Japan.
At first I
was against it because it's not very professional, but I finally
agreed. They were the ones who encouraged her to go into
rehabilitation. It was thanks to them that she was joyful. They were
the ones who took her out for sushi, to the park, restaurants or cafes
for the first time in her life. Thanks to them, she went on a diet,
as she was found by doctors to be quite overweight. Now she is
definitely better able to move around. They are the first people she
misses or looks forward to seeing. They are the first and only people
she hugs with.
In our country, disabled people usually go to such camps with caregivers. Diana used to go with me.
In
March of this year at the camp, her friends told her that they were
changing jobs in the near future. She was devastated by this. True,
they now work closer to us in terms of kilometers, but the place where
they work is no longer a rehabilitation camp, but an ordinary
rehabilitation office. You can go there for something similar to a
camp, but you have to look for a hotel and food on your own. I promised
her that we would go to them even more often than before for camps. I
was sure that in such a large city some hotel nearby would not be a
problem. Unfortunately, just before the planned trip, it turned out
that you have to get there by bus, and I'm afraid of riding buses in a
foreign city, so I told my daughter that we should give up.
Since
then, Diana has been very sad. She doesn't smile as often as she used
to. She even tried to look for an assistant. Unfortunately, the
government program in our country does not allow assistants to travel
with their patients.
The daughter
also doesn't want to go to any other camp, or even to the former one,
because she says there are no more physiotherapists of a good level
there. I have to agree with this, because for a long time,
physiotherapists at a good level started to regularly leave that place,
and her friends were the last good ones. Now the level of
physiotherapy at that place has reportedly dropped sharply since her
daughter's friends left that job. However, I would love to go there
again because of my friends who still go there with their children.
My daughter only now accepts the rehabilitation that she has regularly in our town, and exercises at home by herself.
What can I do to convince her to go to any rehabilitation camp?
3.
Well,
I wanted to finally do something for my daughter. I know that the
physiotherapists she is friends with were also the best specialists she
worked with, because they made her start walking with the help of a
walker.I decided that we would go to an intensive rehabilitation camp
with these physiotherapists in January. I asked my daughter to arrange
everything. She managed to sign up for the only possible week in
January, for four hours of physiotherapy a day. I wouldn't have signed
up if my friend Sofia (name changed) hadn't offered to be the one to
pay for a hotel room or a short-term rental flat. At the same time, I
talked Diana (my daughter) to sign up for another rehabilitation camp
in the same city, which one of my friends recommended to me. Besides,
this camp has "intensive physiotherapy" in its name so it must be
good,but my daughter only wants to go to the camp where her friends
work. I told her that I think she only wants to go there to hang out
with her friends, which is not how it should be.
For
a while I thought she didn't even want to go to this camp where her
friends work,because when Sofia called to ask if we had already chosen a
hotel/apartment Diana said "Does she really need to call now?". "I
don't know what the address is, I didn't ask !" Sofia heard everything
and almost took offence at Diana and didn't want to help us anymore. I
also told Diana that she had behaved terribly.This physiotherapy
office where the camps are organised cooperates with a certain hotel,
and the owner of this office/camp gave Diana the contact details.
(Diana's friends are not the owners, they just work there). It turned
out that the office was four kilometres from the hotel. I already
wanted to refuse because I couldn't imagine travelling by bus and four
kilometres was too much to walk, but after talking to Anna (another
friend) she convinced me to take the bus. On the other hand, I was
worried that there was supposed to be a three-hour break between the
first two hours and the second two hours of physiotherapy! We would be
going back to the hotel at six o'clock in the evening, and I am afraid
to go back at such a late hour because it is already dark by then.
Anyway, there's probably a lot of criminals in such a big city, I was
talking to another friend about it, Ellie, who's also on a child with
Cerebral Palsy, and would like to go to camp there too, and she said
there's no point going to camp in January, it's better to go to camp in
the summer when it's still sunny at six in the evening.
Sofia
said that she would look for a flat close to the physiotherapy office
so that I would feel safe. In the meantime she called the owner of
the physiotherapy office and it turned out that it took two buses to
get from the hotel to the physiotherapy office! It turned out that
Diana had known about this for a long time, only that she had hidden
this fact from me. Sofia and I decided that it was too much for me and
I made my daughter cancel this week-long physiotherapy camp.
Diana
is heartbroken and has not spoken to me for three days now. And yet
Sofia said she would look for us a hotel in the same street where the
rehabilitation office is. Only that Diana was furious and said that
there was no hotel in that street. I also suggested to my daughter that
her friends can always visit her at the physiotherapy camp I want to
go to, but strangely enough she doesn't want that at all. She also
accuses me of destroying the chance of her walking better, and accuses
me of destroying her friendships. (Although from what Diana said her
friends don't hold a grudge against her).Diana also said that she had
received an email from the owner of the physiotherapy office. This lady
wrote that if we cancel the physiotherapy camp again at the last
minute we will still have to pay 50% of the price of each hour. Diana
is heartbroken and has said that she will never go there!
How do I calm her down?Have I really done something wrong?
