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“Together forward” The Autistic People Help Association
My life is not a mistake
My name is Zenona Angowska,
I have got daughter Patrycja, she is twenty-six and she is an autistic person.
We come from Żary, my daughter attends the day room.
My name is Olena Kravczenko, I am the mother of twelve-year-old Irenka,
who is currently a pupil of special needs school, where she has an individualized education programme.
Ryszard Piotrowski, a father of Aldona Piotrowska, 25,
Aldona is currently a student of master's programme at the Zielona Góra University,
where she studies painting at the faculty of arts.
Jerzy Hadzicki from Zielona Góra. We have got son Grzegorz.
Grzegorz is an autistic child, he is a second-year student at the University of Zielona Góra.
I am Jadwiga Dominiak, my son Wojtek is twenty years old,
he is a last-year pupil of lower secondary school in the special needs school in Zielona Góra.
My name is Maria Pochyły, I come from Świebodzin, my son Grzegorz is nineteen years old
and currently attends the work adaptation school in the special needs school in Świebodzin.
My name is Irena Dworska, my daughter Justyna is thirty-two years old
and she attends occupational therapy workshops.
Sebastian Cycuła, I am the president of the association.
Mirosława Halczak, Jacek's mother, Jacek is twenty-four,
he is a participant in the occupational therapy workshops in Zielona Góra.
Mariola Kwiatkowska, I have got son Mateusz, he is seventeen years old,
he attends the school and childcare centre in Gubin.
Grażyna Kochaniak, the mother of twenty-two-year-old Jędrzej,
who goes to the special needs school in Zielona Góra.
Mariola Piotrowska - I am sorry in advance for an injured voice -
the mother of Aldona Piotrowska, a first-year student of master's programme.
Anna Niezabitowska, I have got son Filip, we are from Zielona Góra, Filip is eighteen years old.
Alicja Kuczyńska, I am the mother of Justynian. Justynian is turning nineteen this year,
and because of the distance to any centre offering education
for autistic people he has an individualized education programme.
He is a third-year pupil of lower secondary school and he is taught with the help of the programme of School of Life.
My name is Wanda Mosiejczyk, I live in Świebodzin.
My son Łukasz Mosiejczyk is an autistic person, he is twenty-five years old.
We would like to show to the wide range of people - officials, decision-makers, the local community -
that there is a problem,
that usually there is a lack of offer for our grown-up charges,
that at the point of falling outside the education system they very often stay at home,
very often parents must take care of them and quit working.
We would like to ponder on what to do in order to provide our charges with better future,
to help them to pursue their abilities, to help them to feel good.
And at the same time, we we want to be calmer about what will be in five, ten, or twenty years.
As I have said, Mateusz is seventeen, he attends the school and childcare centre in the special needs school in Gubin
but children finish education when they are seventeen, frankly speeking.
What we do with our teacher is
writing that Mateusz did not get through to the next year and by this, extending his education,
because until the age of twenty-six a child is allowed to attend school.
That is how it works. I cannot imagine Mateusz staying at home all the time.
When summer or winter holidays come ... it is really bad.
I recall the situation when my son was twelve, when the hope was still really quite strong,
and when listening to you demons are waking up, really huge demons
because in my daily life I fend off the thought what will happen next.
Today I just cannot imagine this situation, I try not to think about it because I am scared of it.
Patka is all the time with me, I feel her breath,
whether I go to the toilet, bathroom, kitchen, basement, to dispose of garbage - she is always with me.
Her room is styled according to the demands of an autistic person.
And she is not able to focus on anything more than three minutes and runs after me when i go to another room.
So, I am not free at all. I am with my child twenty-four hours a day.
Filip is in the second year in the lower secondary school now.
I really cannot imagine Filip at home,
after he has finished the school he will have to stay at home.
I will not be able to work, we will get even poorer, and he will get mad completely.
From what I heard from other parents, who were in such a situation, for example Kasia Tołoczko, our charge
when the school had finished, she stayed at home and the regression occured,
now she is in much worse condition than she had been when leaving school.
She was very beautiful when she was a child.
She was really prety and did not look like disabled but more like an ill-bred brat.
I have heard a lot of nuisances because of that,
many people thought there was something wrong with my method of upbringing my child.
She did not look like disabled.
After many requests teacher agreed to let Kasia go to school on two-weeks trial.
There were not any autistic children at the school.
The disabled ought to learn according to a school programme adjusted to their needs and capabilities.
She was going to school for two weeks in September but it did not work out.
The second and the third attempts at going to school did not work out neither.
After three years we got a teacher coming to our home but it failed too.
After that time her education was held back and that was the end.
Later she was too old for anything.
[Therapist:] Being familiar with Kasia's story, with the fact that she has spent so much time at home,
we met her and saw an adult woman playing with a spring
in the narrow range self-reliant, almost not at all,
completely under the care of the mum.
So we proposed her a set of activites.
We wanted to watch her and check whether she can do it,
whether she is able to make contact with us.
To our huge amazement
it turned out that Kasia does some of the exercises from the TTAP test for grown-ups
It was a new situation for her. It was amazing. Many years with no education, with no demands,
and she just sat by the table and was doing the exercises with us.
Naturally, there were some difficulties. She was rebelling, there were some expressions of aggression
but we realized that this was an information to us
that if there is a proper atmosphere and environment for such a person, there may be much better results achieved.
[Therapist:] As the time goes, visiting Kasia has become a pleasure and our anxiety disappeared
as we knew that Kasia would sit with us by table and exercise together.
We also mamaged to go out with her, sit on the bench and talk
She drinks a lot. As I go out I must prepare two jugs of tea or even four if I go out for a longer time.
Today two is enough as she has drunk a lot already.
There is no need to be angry. Mummy loves Kasia whether she had a therapy or not.
Mummy loves you and we are only talking about it.
So? Let us go to the bower.
I am going to the cemetary and Kasia is going to wait for mummy. Give me a kiss.
Because I do like when my Kasia is waiting for me.
There is no need to be angry!
I ask God for just one thing: to let us live together as long as possible and let us die together,
to not leave her to anybody.
Kasia is going to be thirty-seven this year and the fact that she is still playing the spring sitting on her bed
is the result of the fact that in Poland there is not any
developed form of support and care for the people like Kasia.
Carrying out the project which my colleague talked about, we had twenty-five service users.
These all people were grown-ups of the age of sixteen and up with the Autism or Asperger syndrome.
We heard on the grapevine
that in several places, especially small ones, of our Lubusz voivodeship there are plenty of people
whose lifestyle, because of the lack of an offer for the people who accomplished special needs school,
usually consists in staying home and spending time with parents. They have no structured plan of a day at all.
My Jacek has been attending on the occupational therapy workshops since September 2010.
He is all right as accepted by other members of the group, but there are still some problems
because Jacek is a very stereotypical person
and once he gets used to one of the classroom there is no way he leaves the room and changes it for another.
He is now on the stage of the kitchen room
and we are afraid of the problems when he will have to change the room.
He is stereotypical: when he projects something, like going to a given place
and the group has different plan,
he expresses strong objection and protests.
It is certainly a very good place,
it helps him to develop and socialize, but because of his syndrome and a great number of stereotypical behaviors
it is hard for him to pull himself together.
After the lower secondary school the problem of what to do next has appeared.
He is not fit for avocational school.
So maybe therapy workshops?
So I had him tested in Gorzów and I was told he is not ready for workshops.
There is a work adaptation school.
He started attending the school in September and the drama has begun
as the primary and secondary school he attended, the Catholic school, was small, fifty people only,
everyone knew each other, one big family. Grzegorz felt accepted, he felt great there
and suddenly he comes here - totally different team, different teacher, different demands
and suddenly instead of religion class, there is art.
So Grzegorz takes his backpack and goes home
as it is not consistent with his schedule.
And for now it looks like that he is going to attend there till he is 24 years old.
He has started accepting the system slowly.
But what will be after that?
Deeply in my head I have the thought which still has been haunting me and does not allow me to sleep:
What is going to happen when we are no longer here..?
I heard many heartening information about the future,
because Wojtek, in spite of the fact that it was really hard to spend time with him,
because a child who does not eat is a terrible experience for parents and a whole family in general,
he was very cheerful, joyful, bustling, and, so to say, a lot of optimistic impression aroused when you saw him -
if he was so cheerful and joyful the therapy would bring results quickly.
So, our Wojtek went to school at the age of nine.
He has been in the school until nowadays even though he is already nearly twenty-one year old bloke.
[The principal of the special needs school in Zielona Góra:] We are trying to create a broad base of therapeutic and additional activities,
which are carried out on individual basis, in order to support chlidren's development opportunities in the best possible way,
and to adjust individually the forms and methods of working with them.
We implemented many kinds of therapy, among others: Sensory Integration, Tomatis Method based therapy,
we also have been using EEG Biofeedback for two years,
This year we have started kynotherapy as well.
Thus, there is a wide range of possibilities as for today
so we do not have to be ashamed.
I am certain of the significant role of the school in shaping Wojtek's personalisty and behaviour
but the begining was terribly hard.
If compared school with an organism, Wojtek was often the reason of inflammatory conditions
so serious ones that it was challenging to work with him for sure.
But during the eleven years at school, the inflammatory conditions have abated as time goes by
And as I say, I am not able to thank all the teachers
but I can promise
that I will do my very best not to waste their effort.
Our work finishes on the education stage
and it turns out that, for example, there is no place in occupational therapy workshop,
there is no place in a community support care home
and it happens that a child or even an adult person,
saying "a child" I mean someone who is taught from the youngest age,
so, the adult gets closed within four walls at home
and that surely is the worst what could happen
because these all years of our work at school are wasted and moreover,
the future of such a person is up in the air.
Will they be able to find fulfilment, realize their dreams?
Not all the children will feel good in the open occupational therapy workshops
because it might happen that there is no one whom they know from their closest circle,
and that results in a distortion of sense of security and it may happen that
they become aggressive, self-injurious - this is not a secret that autistic children behave in this way -
manifesting anxiety in relation to what is happening around them.
That is why it is recommended to create such a workshop where people aware of such difficulties would work.
Every single day we work on the future, every single day we create a better future
by trying hard to make Wojtek's life better and more independent.
My great hope lies in the work of therapists, doctors and volunteers of the Autistic People Help Association
as they are "a treasury of people".
I have worked with Wojtek for some time, maybe two years.
At the beginning we had one to one classes,
and that time Wojtek was displaying many difficult behaviours - both aggressive and self-injurious.
I did not know him at first so I did not realize how good he was at work-like activities.
Only when we created a group of three charges in similar age
it appeared that Wojtek made most of his tasks immediately.
He does not like just sitting and doing nothing so we have to keep him active.
He learns very fast - it is enough to show him a new task,
new activity once or twice and he can do it by himself
with no control. I think it is important than he can really work independently.
It happens that one of us is on holidays and the group of three boys is under the supervision of one therapist only,
and Wojtek is such a boy who does not have to be encouraged to work.
Actually, our offer is not sufficient for him any more,
we can give him similar tasks next week,
but it is clear that he has got such a huge potential, huge capabilities,
of which we are not able to make good use as we do not have appropriate conditions .
Although Jurek's and my children study already, there are still a lot of problems remaining.
We are the parents of the autistic children who you describe as outstanding
but we also have the same problems: what next?
She has been with us for the whole life; to all intents, we revolved our life around Aldona.
Our older daughter is self-sufficient, but for the last 25 years we have spent twenty-four hours a day with Aldona.
It is not that she is outstanding - she will finish her studies or even yet another field of studies.
She is not self-reliant, she is still an autistic person.
She still cannot count to ten, cannot read a clock and has problem with mathematical concepts,
and that all is of key importance nowadays, isn't it?
For example, she knows that her average mark is 4,95. But she does not know if it is is more than 5 or less than 5.
She does not how much five is.
Looking at Grzegorz, he studies IT, he has had a computer since the early times at kindergarten at Głowackiego Street.
He got to like it, he feels good at it and this environment provides him with a sense of security.
But we discovered that he also has a talent for art,
talent for music. A computer allows him to create, compose and arrange the music.
Studying IT he faces the difficulties of reality and needs to adapt to all other students
but is not that he always adapts to all students -
the toilets are cleaner at mechanical engineering faculty
- in these situations he is just an ordinary autistic person.
My Irka is only twelve and is probably the youngest child on our today meeting.
Every our day looks the same - we have several therapies,
we go to school, we work at home with her many hours a day. I have given up my professional career.
Now I work as an autistic child's mother.
I do all of it so that she can become more independent when grown-up,
so she can learn and get used to how to live her adult life on her own.
But I do not really know how it is going to be...
My children go to primary school; I have got three autistic children.
I see their abilities, needs, and expectations.
They are not aware of expressing their emotions
but of course they express their fears which we receive and analyse.
They are the people who having favourable conditions, make amazing progress and surprise us.
There is going to be a problem when we are not here any more, when we become infirm - what will we do with them?
Who is going to treat them like we do?
Who is going to see them in the same way as we do?
Not as if they were morons, retarded people,
but as estimable human beings who have a right to lead their own life as far as it is possible
and give others something from themselves.
I have started thinking about it when my youngest son was almost as tall as me.
I realized these thoughts are in my mind all the time
that it is going to happen. But I was trying to escape these fears
Once I realised that this problem was going to affect me at one point
I started thinking what will happen next? After I have got weaker, after I have died - what is going to be with my child?
Thinking this way helped us to notice the possibilities of doing something good for both our children and other as well
and of sharing our experience.
And that is why we think of creating community
which would consist first and foremost of autistic adults of different efficiencies.
There are a dozen or so of us here
and your children have been the first ones in the association. But there are 110 charges now
and they all will be grow-ups one day.
That is why I think we cannot just sit and think how it is going to be in 20, 30 years.
We just have to sit, write a plan, really hard work, and probably blaze a trial in Poland.
The proper conditions help their potential go out. They really feel fulfilled in the activities we offer them.
For example office work:
there are charges who can handle very well equipment such as binding or laminating machines.
We create with them greeting cards, stationery products, we bind books, we create art works.
However, we are limited in these areas because of the funds
but we know that if we could broaden the range of our laboratory, our offer
then for each adult, even strongly disordered, we could find a suitable activity.
We learnt and experienced this.
We have ideas for other workshops: handicraft, DIY, culinary workshop.
There are ideas, there are plans but at the moment we just do not have the possibilites of realizing them.
We wish we could offer them something more than just one and half hour of office work or communication workshops.
The centre would be the place of social activation of the service users in their contacts with other people.
Thanks to the association, Łukasz has become more open ans social. He wants to make new friends.
He likes Justynian very much, they often talk with each other on the phone.
My son is generally very rebellious, I do not know if any of you have experienced it.
He had been reluctant to everything
and had reacted aggressively to all the situations when he had a different point of view.
And for the time being, after merely a few meetings he has had much different facial expression.
You can tell from their expressions how glad and happy they are after the meetings.
When we come to the centre and Justynian is not there yet, he often calls him asking if he is arriving at all.
As the door of the centre opens he checks if it is one of his friends coming.
There is a sense of belonging arising: I am needed, I have someone and I wait for someone,
and someone waits for me.
I am not sure if you have noticed that but we all the time speak about our children as just children.
And they are adults already.
Let's not become discouraged by the fact that our children are in their twenties and they are not able to do something.
We still have time to teach them it.
Quite possibly they won't speak using beautiful sentences
but maybe one day they will communicate with us better than they do now.
There is a huge chance for them and a lot of work to do for both us and the therapists.
But important is that they get a chance
in a place where there are people prepared to work with our adults.
Also, this place has to be properly adapted for them.
We do not want our son to be idle, doing nothing, just staying at home, as no one would hire him; even though he could work.
After all, he can easily use computer and he could do simple office work
but no one wants him. Hiring the disabled is just a talk.
Here is the most suitable place to discuss how to do it
as we have already got experience.
The institution that we aim to create should be related to and based on the association.
At the moment there are people who are just waiting to be given work.
It is like with jobless people waiting for job when there is nothing suitable for them:
autistic people in a way can be treated like a group of jobless,
who could give a lot on a labour market, displaying their skills if they only could.
I recall an autistic adult from our group classes being asked:
"what is an unpleasant thing about yourself you don't want to hear?"
I remember her saying she does not want to hear she is a life mistake.
My heart is beating faster when I recall it as I remember I was really touched when I heard it.
I would like the autistic people to feel that their existence is meaningful.
When we started working on the project, the movie,
I thought how we could help Kasia and Wojtek, but it turned out that there are system solutions needed.
Thanks to the meeting I realized that there is a need to investigate the problem of autistic adults as a whole.
I could see the parents' enthusiasm and eagerness to do something that will pay back in the future.
It turned out that institution of vocational activation or any other form of physical activity for our children
is something the parents can engage in, something that really can be created.
We have the potential, we have the place that we can use - the cellar in our building at Sienkiewcza Street.
It probably will be enough for some time.
We need only funds for refrubishment and prepaing the place so that children could work there.
In the future however, we will have to think about other place where our adult charges could live and work.
We have 110 of charges at the moment. Most of them are children but there are teenagers too.
Time passes very quickly - this year we are celebrating the 10th anniversary of our Association.
In ten years we will have over 100 adults who will have to work.
Their future depends on whether we are able to create such a place...
More information about the association: www.autyzm.zgora.pl