Small Steps to Big Triumphs

frontiers
The Finnish Association on Intellectual and Developmental Disabilities 2008
Small Steps to Big Triumphs
Matias Boström is a true fighter. Through persistent rehabilitation, he has grown from a child unable to move and unresponsive
to stimuli into a boy who rejoices about life in many different ways.
T
he journey to the house of
the family Boström leads us
through a gravel road which
becomes constantly narrower and
more winding. At the end of the small
road we find a pink private house.
The family has only recently moved
into their newly built home and a
large amount of work still awaits
to be done in the yard. The family
includes, besides Kirsi the mother
and Mikael the father, also the 6year-old twins, Matias and Kristian.
The boys were born 24 weeks
prematurely and Matias suffered a
massive cerebral hemorrhage when
he was born which resulted in multiple disabilities. Among them are
cerebral palsy, epilepsy, seeing and
hearing impairments and developmental disability. Matias was almost
completely immobile since birth and
he didn’t react to external stimuli.
Matias could only move his mouth
and right hand and was entirely
locked in a world of his own for the
first year and a half of his life.
PoKe training
During the mentioned year and a
half Matias was offered physiotherapy and occupational therapy but to
such a small extent that it produced
no results and his mother started to
lose her faith in the power of therapy. Instead of continuing what
seemed like unsuccessful therapy,
she started to seek out new methods and finally found out about PoKe
therapy through friends.
PoKe rehabilitation (rehabilitation for children and young people
with special needs) is largely based
on exercises that affect the different
sensory processes. The aim is to normalize the child’s sensory processes and to build up her/his self-concept. With this approach, the rehabilitation also influences the child’s
overall development and functional
capability.
In addition to the sensory exercises, the program includes exercises connected with learning and controlling motor skills and with memory, communication and information
processing. The younger the child
starts the rehabilitation, the more
useful it is.
PoKe rehabilitation was the
answer that the Boströms had been
looking for. Even before finding the
program, the parents had developed
on their own various rehabilitation
exercises which were based on a similar approach as the PoKe method.
“For example, I’d train Matias
during long car rides by holding his
left, clenched arm open, to treat his
posture. We also tried to activate
Matias’ hearing sensations with a
self-made hearing bed. The bed is
made up of loudspeakers which are
placed inside a cardboard box. When
music is played, the vibrations of the
bass sounds can be felt on the surface of the box. I also made different
smelling boxes so that Matias could
smell different scents. In this way we
were able to establish some kind of a
contact with Matias as he started to
react to the smells and other stimuli”, Kirsi Boström recalls.
Starting from
grassroots level
“When we got to the PoKe clinic, we
felt for the first time ever like someone other than us was interested in
Matias. The rehabilitation was begun
from the very basics by building up
his self-concept, since nobody can
function in their environment if
they don’t know their own body”,
Kirsi remarks.
“At the first stages our home
life wasn’t rehabilitation but more
of an attempt to entice Matias to
come out of his shell. We did an enormous amount of work before we got
to start actual rehabilitation”, Kirsi
points out.
A year after starting PoKe rehabilitation, Matias learned to crawl.
It was a day of great triumph to the
family. The first eye contact has also
stayed indelibly in mother Kirsi’s
mind.
“Matias had never before
looked directly into my eyes, and I
couldn’t know for sure that I wasn’t
just air for him. Then one day when
I was changing his diaper I felt that
he was looking at me. It was a magnificent moment”.
In Kirsi’s opinion, Matias’ unresponsiveness to treatment during
the first year and a half was depression, but thanks to the rehabilitation
he is now an entirely different person who wants to interact socially.
This is one of the greatest victories
in Matias’ life.
Assisted walking or other leftright coordination exercises connected with walking are an essential
Kristian (right) likes to romp around with his brother Matias.
Photo: Kimmo Räisänen.
part of the PoKe method because the
brain needs left-right coordination
in order to develop. For this reason,
Matias is walked daily even though
he can’t walk on his own.
Help from background
in sports
Kirsi and Mikael Boström are both
former top athletes and this background has also been of help to them
with Matias’ rehabilitation.
“We are both orienteerers
and are used to goal-directed and
systematic training. We trained 15
years for orienteering. Still, compared to what we have been doing
with Matias, the time we’ve spent
on orienteering is nothing. The way I
see it, orienteering in fact trained us
for Matias’ arrival in our lives”, Kirsi
reflects.
“If Matias hadn’t received rehabilitation treatment, he would be a
severely disabled bed patient. Due
to the rehabilitation, he has become
en energetic little man who can
stand on his own two feet and has
learned to enjoy moving about. He
has gained skills with which he can
have an effect on his own life”.
“Don’t Put Me Down!”
Being teased or bullied is hard for anyone, and it is something
certainly no one can ever be safe from. Kalle Havumäki, rapper
of the Resisposse rap band, has bitterly experienced what it is
like to be net bullied.
K
alle, 17, is a laid-back guy
with whom it is easy to talk
from the very first handshake.
Kalle, who is a tenth-grader at the
Käpylä comprehensive school, has
for years performed as the vocalist of the Resisposse band and is
therefore accustomed to meeting
new people and being in the public eye. Kalle is not the only celebrity
in the family, his mother Marjukka
Havumäki, news reporter for YLE
TV1, is undoubtedly a familiar face
in every Finnish home.
Kalle’s interest in music started
with keyboard instruments, but he
soon discovered that rap was definitely the best form of expression
for him. Resisposse is made up of
disabled musicians and they speak
strongly in favor of being different,
and against bullying.
Flipside of being famous
Two years ago Kalle started to suddenly receive prank calls and was
often also teased on his way to
school. It turned out that a youth TVprogram called Booster where Kalle
had performed had published a clip
of his performance on its website.
Someone had uploaded the video
to YouTube, and news of the video
quickly spread in Kalle’s school. Soon
several mock versions of the video
also appeared on YouTube.
The bullying reached such proportions that Kalle had to make his
phone number secret. Finally Kalle’s
teacher suggested to the boy’s parents that they file a report with the
police.
The person who had put the
video on the Internet was traced and
he turned out to be, not a young person, but a 30-year-old man. Kalle and
his parents did not however want
to bring charges against the man,
because it wouldn’t have improved
the situation in any way. The problem was the video clip which was still
available on the Net and lived a life
of its own there, in addition to the
discussion that had emerged around
the video, which had started off in
an aggressive tone. It put forth ideas
that disabled people aren’t allowed
to do the same things as non-disabled people. More recently approving opinions have fortunately been
on the rise.
Authorities are powerless
The family and their support group
took action to have the video
removed from the Internet.
“I have become calmer”, Kalle (right) describes his personal development.
Photos: Liisa Huima.
“At the start we believed that
justice always wins and the system
is equipped to fight against injustice. We learned, however, that in
a case like this there was no legislation that would require that the video be removed from the Internet, let
alone that the persons responsible
would be punished. The person who
had put the video on the Internet got
out of the whole thing with no consequences,” Marjukka states.
The reporters from Booster sent
an email to the YouTube headquarters
in the US and asked them to remove
the video. The police also tried to correct the situation through, for example, Google which owns YouTube.
YouTube replied that they saw no
cause to intervene. And so the video
will probably stay running on the Net
until the end of the world.
Support of friends is important
The harassment occupied Kalle’s
mind to the extent that he couldn’t
concentrate on anything else. Finally
he had to go and talk to the school
social worker. And for a long time
he didn’t want to take part in any
newspaper stories or interviews in
fear that the material would end up
on the Internet as well.
“The person behind it is not
held responsible, but the victim will
have to cope with the experience.
At some point Kalle even considered
giving up rapping, because the very
thing that has raised his self-esteem
had turned into a problem through
which people were trying to put him
down”, Marjukka remarks.
Kalle could have been mentally crushed because of the bullying if his positive and optimistic
personality hadn’t helped him to
get through the hard times. Also
the support from his friends was of
great importance.
“The incident has taught Kalle’s
friends, too, to understand that there
is a high price to publicity”, Marjukka
reflects.
Now two years have already
passed since the incident and Kalle
has got over it nicely.
“These experiences have also
made Kalle stronger. He is now more
certain than ever that rapping is his
thing. He has learned not to care
about other people’s spiteful opinions”, says Marjukka.
“Disabled people are not toys!
The bullies don’t understand that I
am what I am, but they still shouldn’t
put me down”, Kalle adds with determination.
“Sights Set on
a TV Career”
Markus Lohikoski got a dream
job on Sub.
M
Markus has faith in his future at Sub. Photo: Eeva Grönstrand.
arkus Lohikoski, 25, is not
what you’d call a shy guy.
The young man comes to
greet us with an outstretched hand
in the joint lobby of the MTV3 and
Sub TV-channels, and from that
moment on his mouth never stops
for a second. On our way to the Sub
offices Markus swiftly opens the
doors with his cardkey and introduces, in passing, also the MTV3
premises. It seems as if Markus had
been working in television for ages
already, but in fact he only has three
weeks on the job behind him.
Sub’s B2B publicist Katariina
Kantola worked before as a program coordinator for the company,
and her work included, for example,
carrying out various PR tasks. When
she became a publicist, some of her
former tasks were left unattended.
Opportunely, just around that time,
Sub got an interesting letter from
Finland’s Common Responsibility
Campaign Office.
The domestic target of this
year’s Common Responsibility
Campaign is to support meaningful employment opportunities for
people with intellectual and developmental disabilities. To this effect,
the campaign office sent out thousands of letters to companies all
around Finland offering people with
intellectual and developmental disabilities for their employment. Sub
was interested, and soon there were
two potential candidates on offer.
Markus has a clear perception of why
he was chosen.
“I am quick to learn new things.
I am also a very social person and get
along with other people well”, Markus
lists his strengths. Markus’ own pastime interests, such as photography,
and his knowledge of TV culture are
important qualities in terms of this
job, Katariina continues.
Versatile job description
Markus started work at the end of
March. On his first days he was supported by job coach Pirjo Niskakoski
from the supported employment
services of the City of Helsinki.
“It is good that all the things are
well explained right from the start.
The job coach is also excellent mental support, but I don’t hesitate to
ask my coworkers questions either”,
good-humored Markus reflects. His
job includes, for example, receiving
visitors, copying programs and sending them to reporters for previewing,
press follow-up and copying news
dealing with Sub and archiving them
in a chronological order.
“I also clean the board in the
conference room and fill the copy
machine when it runs out of paper”,
Markus adds. He works six-hour days
four times a week and feels that the
present work pace is just right for
him. He has been very well received
and the feedback from his coworkers
has been singularly positive.
“Markus is a cheerful and social
person. He has brought his own personality to our work community and
learned his job very well. Markus only
has three weeks of experience in the
job, but he is already working independently”, Katariina commends.
At present Markus is still on a
trial period, but he has a clear vision
of his future.
“In November we’ll see if my
contract will be continued, but I’m
pretty sure that I’m off on a good
start with a career in television. I’m
thinking I’ll stay here until my retirement days”, Markus confidently
remarks.
Jack Heiskanen is a highly productive artist, with works to spare for
every wall in his home. Photo: Eeva Grönstrand.
Art Gives Long
Lasting Joy
Intellectually disabled artist of
the year 2008 Jack Heiskanen
is a fascinating personality
who doesn’t easily run out of
things to say.
J
ack’s home in Lieksa, East Finland,
is filled with the scent of freshly
baked rye bread. Jack’s mother,
Marja Niskanen, has baked an ovenful of bread and the big baking oven
spills its even warmth throughout
the whole house. The same warmth
is also reflected from the people who
live in the house, who include, apart
from Jack and his mother, also Jack’s
big brother, Joel Heiskanen. Jack’s
eldest brother, Jouni, and sister, Jane,
live elsewhere with their families.
Joel and Jack are best friends
and they understand each other from
half a word. Despite their many hardships and illnesses, the brothers show
a kind of positive approach to life
which is hard to come by. Joel works
during weekdays at the Suomipuu
planing works and Jack works daily
on his art at the Lieksa Art Activity
Center. At home the brothers help as
best they can their mother who has
suffered a stroke.
Fun inventions
Jack and Joel take care of all the heaviest work at home. “For instance, we
mow the lawn together. One of us
mows the road-side of the yard and
the other mows behind the house”,
Jack elaborates.
Different innovations that
make life easier are also a part of
the Heiskanen borthers’ everyday
life. For example, the brothers have
improved the driving qualities of the
lawnmower with aluminum pipes
from an ironing board. One of the
handiest solutions is however a plow
they have developed out of a baby
carriage. With it the soil was easily
turned over in the potato field while
Jack served as the draught horse and
Joel steered the plow.
Artistic talent runs
in the family
The Kettuki support organization for
disabled artists nominated Jack disabled artist of the year 2008. Also
his mother and his brother Joel are
strongly artistically inclined. One can
see different objects of art and paintings everywhere in their home and
garden. In the yard stands a wicker
cow Joel’s mother has plaited and a
bear and a turtle Joel has carved out
of a block of wood with a chainsaw.
But most of the artworks at their
home are made by Jack.
“Art gives long lasting joy”, Jack
remarks as he looks at the work of
his hands.
Flying cows
Jack’s works often feature animals,
farm life and different farming
machines. Cows are especially close
to the artist’s soul.
“I guess I was born in the
wrong family, since we don’t have
any cows”, Jack says with a glint in
his eye. He is wearing a T-shirt with
a picture of a cow on it and rubber
boots on which his sister Jane has
painted the face of a cow.
Resourceful and active artist
Artist Kikka Jelisejeff who was an
instructor at the Lieksa Art Activity
Center has got to know Jack well over
the course of the years. She describes
Jack’s language of form and way of
constructing images as highly distinctive.
“Jack is an extremely versatile
artist who is capable of working very
intensively. He is always active with
and sure about what he does. He
is also very precise and never sloppy with his work. He usually speaks
constantly or tells stories while he
works”, Jelisejeff characterizes.
Supporting one’s own
expression matters the most
“Disabled artists are difficult to teach
many technical aspects of painting,
such a perspective, but this can also
be a good thing, because otherwise
their unique way of perceiving things
would suffer”, Jelisejeff says.
C
onsumption of alcohol during
pregnancy is one of the greatest single cause of developmental disabilities in Western countries. In Finland 600–1000 babies
who have problems caused by prenatal exposure to alcohol are born
every year.
FASD (Fetal Alcohol Spectrum
Disorders) is a new umbrella term
describing the range of alcohol-related birth defects. The most severe
form of them is FAS, Fetal Alcohol
Syndrome.
The subject is still a sensitive
one. The diagnosis is often not given and the children with the birth
defects are not always identified.
According to international estimates,
only around 20% of the children with
alcohol-related birth defects are
diagnosed.
Alcohol-related birth defects
can appear in the children as restless
The project “From Invisible to Visible” was launched on 23 October 2008 at the
National Museum of Finland. Photo: Panu Koski.
Help for Children with
Alcohol-Related Birth Defects
and hyperactive behavior. Another
typical characteristic is an inability
to recognize one’s own boundaries
and an insistent need for approval
from others. With a large number of
the children the signs are not clearly
visible, but they may appear as learning difficulties and attention span
problems.
FAIDD has started a threeyear project titled “From Invisible to
Visible” (Näkymättömästä näkyväksi). The project produces information on FASD and develops support
models and services for FASD children and adolescents. The project
also includes a research scheme for
investigating attitudes in the service
system.
The other partners in the
project are the Finnish Federation
of Mother and Child Homes and
Shelters and the Finnish Federation
of Foster Care Associations.
FAIDD – The Finnish Association
on Intellectual and Developmental Disabilities
T
he Finnish Association on
Intellectual and Developmental
Disabilities (FAIDD) promotes
good life, equality and participation
for people with intellectual disabilities and others who need support
with learning, understanding and
communicating. The goal of FAIDD
is that all people can live together
from an equal footing.
Research and Development
FAIDD offers continuing education
for staff working with the rehabilitation and care of the intellectually disabled. In addition to national training
and education, the range of services includes interdisciplinary education tailored to meet the wishes and
needs of client organizations.
Basics of work with people with
intellectual disabilities can also be
studied on the web.
Through its research activities, FAIDD follows development in
the field and changes in the operating environment and the lives of
people with intellectual disabilities.
The research findings can be used by
professionals, service users and their
friends and families, politicians and
other decision-makers. The research
projects are carried out in multidisciplinary cooperation with domestic
and foreign universities and research
institutes.
Teaching Materials
Center
With the help of various materials,
the goal of the Teaching Materials
Center is to support the life of the
intellectually disabled towards
increasing independence and competence. The center produces material with the goal of increasing people’s participation, self-determination and capacities in different
spheres of life.
Tikoteekki
The Communication and Technology
Center Tikoteekki provides information and training on possibilities for
people with speech impairments to
communicate and on ICT solutions
for people with disabilities, develops interactive operating models
and performs assessments on communication and computer use.
Papunet – Accessible
Web Services
The Papunet Web Service Unit
(www.papunet.net) develops accessible web services for the internet,
provides training and consulting on
accessible web services and produces the Papunet website. The site
offers information as well as game,
symbol, bliss and plain language pages with entertainment, stories and
opportunities for activity and selfexpression.
Plain Language Center
The Plain Language Center publishes
newspapers and brochures, adapts
texts to plain language on commission, provides training in plain language and distributes State support for plain language literature.
The center publishes the biweekly
Selkouutiset (Plain Language News)
in Finnish and LL-Bladet in Swedish,
with news and articles on current
events. The Papunet Web Service
Unit and Verneri Web Service produce plain language material for the
Internet.
Ketju Magazine
Ketju is a magazine on the lives of
people with intellectual disabilities
and others who need support with
learning, understanding and communicating in modern-day Finland
and other parts of the world. Ketju
provides information, shares ideas
Publisher: The Finnish Association on
Intellectual and Developmental Disabilities
Editor in Chief: Veli-Pekka Sinervuo
Editors: Eeva Grönstrand, Suvi Vaarla
Translations: Susan Heiskanen
Layout: Panu Koski
Editorial Office: Viljatie 4 A, FI-00700 Helsinki, Finland
Tel: +358 9 348 090
Internet: w ww.faidd.fi
E-mail: kvl@kvl.fi
and inspiration and serves as a uniting forum for people and organizations in the field.
Verneri – Website on
Intellectual Disability
The intellectual disability web service (www.verneri.net) offers information on intellectual disability and
on services and benefits. Verneri features a databank and includes also
a section for persons with intellectual disabilities written in plain
­language.
Library on Intellectual
Disability
The FAIDD library is the largest special library in its field in Finland. One
can visit the library in person or find
details on the collections on the
FAIDD website. The library provides
loaning and distance loaning services, an information office and data
services.
International Activities
FAIDD is actively engaged in development cooperation, cooperation
with neighboring regions and various European developmental projects.