what does uncertainty mean to you not knowing what’s going to happen next not
knowing what’s going to happen next not
knowing what’s going to happen next not being understood not knowing what the
being understood not knowing what the
being understood not knowing what the future holds for you as a child but also
future holds for you as a child but also
future holds for you as a child but also seen the same for your own children
seen the same for your own children
seen the same for your own children a feeling of Amber addict ability at the
a feeling of Amber addict ability at the
a feeling of Amber addict ability at the age of five civil war torn my country
age of five civil war torn my country
age of five civil war torn my country apart my childhood was spent running
apart my childhood was spent running
apart my childhood was spent running from one country to another I never had
from one country to another I never had
from one country to another I never had the chance to explore the world around
the chance to explore the world around
the chance to explore the world around me
me
me due to consistent uncertainty and
due to consistent uncertainty and
due to consistent uncertainty and certainty in the form of well that I
certainty in the form of well that I
certainty in the form of well that I would survive the raids tomorrow I never
would survive the raids tomorrow I never
would survive the raids tomorrow I never had a real base which I struggle even
had a real base which I struggle even
had a real base which I struggle even now sometimes to believe I have one I
now sometimes to believe I have one I
now sometimes to believe I have one I play Mayan subtle life for not allowing
play Mayan subtle life for not allowing
play Mayan subtle life for not allowing me build up trusted connection with the
me build up trusted connection with the
me build up trusted connection with the world around me when I was 18 I had my
world around me when I was 18 I had my
world around me when I was 18 I had my first child sack he was this beautiful
first child sack he was this beautiful
first child sack he was this beautiful chubby boy who was the joy of my life
chubby boy who was the joy of my life
chubby boy who was the joy of my life bought me so much happiness my mum was
bought me so much happiness my mum was
bought me so much happiness my mum was over the moon that I bought a little boy
over the moon that I bought a little boy
over the moon that I bought a little boy into the family finally I thought I had
into the family finally I thought I had
into the family finally I thought I had everything I could ever wish for one day
everything I could ever wish for one day
everything I could ever wish for one day I heard sac laughing to himself so I
I heard sac laughing to himself so I
I heard sac laughing to himself so I went upstairs to see what he was
went upstairs to see what he was
went upstairs to see what he was laughing at hoping to join with him when
laughing at hoping to join with him when
laughing at hoping to join with him when I went into the room he was looking at
I went into the room he was looking at
I went into the room he was looking at me but not looking at me something had
me but not looking at me something had
me but not looking at me something had changed something was not right from
changed something was not right from
changed something was not right from that point onwards he continued to
that point onwards he continued to
that point onwards he continued to deteriorate lost the words he spoken no
deteriorate lost the words he spoken no
deteriorate lost the words he spoken no eye contact and no engagement with
eye contact and no engagement with
eye contact and no engagement with people it was like my child slowly taken
people it was like my child slowly taken
people it was like my child slowly taken away from me without anyone believing me
away from me without anyone believing me
away from me without anyone believing me imagine someone physically taking your
imagine someone physically taking your
imagine someone physically taking your child and the trauma involved in my
child and the trauma involved in my
child and the trauma involved in my mother tongue language there’s no word
mother tongue language there’s no word
mother tongue language there’s no word for autism the closest word would be the
for autism the closest word would be the
for autism the closest word would be the interpretation of someone being mentally
interpretation of someone being mentally
interpretation of someone being mentally ill I could not accept that for my dear
ill I could not accept that for my dear
ill I could not accept that for my dear little boy I felt that feeling I felt as
little boy I felt that feeling I felt as
little boy I felt that feeling I felt as a child that feeling that I thought I
a child that feeling that I thought I
a child that feeling that I thought I ran away from and left behind I hated it
ran away from and left behind I hated it
ran away from and left behind I hated it it was that feeling of fear and
it was that feeling of fear and
it was that feeling of fear and uncertainty again the age of two and a
uncertainty again the age of two and a
uncertainty again the age of two and a half sack was diagnosed with severe
half sack was diagnosed with severe
half sack was diagnosed with severe autism he display unusual and repetitive
autism he display unusual and repetitive
autism he display unusual and repetitive behavior lack of empathy no awareness of
behavior lack of empathy no awareness of
behavior lack of empathy no awareness of danger some of the characteristics of
danger some of the characteristics of
danger some of the characteristics of autism
autism
autism for the first time in my life I had to
for the first time in my life I had to
for the first time in my life I had to meet a team of intimidating
meet a team of intimidating
meet a team of intimidating professionals which I’ve never heard of
professionals which I’ve never heard of
professionals which I’ve never heard of them before I had no context to
them before I had no context to
them before I had no context to understand what was going on or who
understand what was going on or who
understand what was going on or who these people were us these people don’t
these people were us these people don’t
these people were us these people don’t exist in Somalia ultimately they had no
exist in Somalia ultimately they had no
exist in Somalia ultimately they had no context to understand me there seemed
context to understand me there seemed
context to understand me there seemed little consideration of the possible
little consideration of the possible
little consideration of the possible cultural barriers they talk in terms
cultural barriers they talk in terms
cultural barriers they talk in terms that were foreign to me they speak with
that were foreign to me they speak with
that were foreign to me they speak with each other in the meeting as if I was
each other in the meeting as if I was
each other in the meeting as if I was nobody
nobody
nobody it felt like I was just there as a tick
it felt like I was just there as a tick
it felt like I was just there as a tick box exercise mom was there when
box exercise mom was there when
box exercise mom was there when decisions were made it was like I was
decisions were made it was like I was
decisions were made it was like I was present but not present they barely knew
present but not present they barely knew
present but not present they barely knew you Zack I was his mother and care for
you Zack I was his mother and care for
you Zack I was his mother and care for him 24/7 but no in that environment I
him 24/7 but no in that environment I
him 24/7 but no in that environment I was not the expert they knew best for
was not the expert they knew best for
was not the expert they knew best for sac and so they made all the decisions
sac and so they made all the decisions
sac and so they made all the decisions of what happened next I decided to speak
of what happened next I decided to speak
of what happened next I decided to speak with my family about what happened with
with my family about what happened with
with my family about what happened with the professionals and the respond was
the professionals and the respond was
the professionals and the respond was what do Western doctors know about us
what do Western doctors know about us
what do Western doctors know about us it’s different with us they don’t
it’s different with us they don’t
it’s different with us they don’t understand us it was clear my family and
understand us it was clear my family and
understand us it was clear my family and friends were thinking doctors refer to
friends were thinking doctors refer to
friends were thinking doctors refer to him as though he was mentally ill so my
him as though he was mentally ill so my
him as though he was mentally ill so my family didn’t want me to share any more
family didn’t want me to share any more
family didn’t want me to share any more concerns about Zack with the
concerns about Zack with the
concerns about Zack with the professionals on the outside world my
professionals on the outside world my
professionals on the outside world my mother thought tried to reassure me look
mother thought tried to reassure me look
mother thought tried to reassure me look at him he’s so handsome and the way he
at him he’s so handsome and the way he
at him he’s so handsome and the way he gets long periods of times
gets long periods of times
gets long periods of times thinks means he’s so intelligent and so
thinks means he’s so intelligent and so
thinks means he’s so intelligent and so I should not worry bless her for being
I should not worry bless her for being
I should not worry bless her for being so comforting if only she understood
so comforting if only she understood
so comforting if only she understood autism nice turn things long period of
autism nice turn things long period of
autism nice turn things long period of times means he’s very autistic I fell
times means he’s very autistic I fell
times means he’s very autistic I fell stuck between two worlds the
stuck between two worlds the
stuck between two worlds the professionals and my community neither
professionals and my community neither
professionals and my community neither of which understood me and neither of
of which understood me and neither of
of which understood me and neither of which and this dude’s AK stuck in the
which and this dude’s AK stuck in the
which and this dude’s AK stuck in the middle which has become the title of my
middle which has become the title of my
middle which has become the title of my book and it was here that I started us
book and it was here that I started us
book and it was here that I started us and then me and Zack against
and then me and Zack against
and then me and Zack against establishment and community struggling
establishment and community struggling
establishment and community struggling to break free from a long-standing
to break free from a long-standing
to break free from a long-standing culture special nude schools was not
culture special nude schools was not
culture special nude schools was not working for Zack so I decided to take
working for Zack so I decided to take
working for Zack so I decided to take things into my own hands and home
things into my own hands and home
things into my own hands and home indicate Zack I had one goal what can I
indicate Zack I had one goal what can I
indicate Zack I had one goal what can I do today to get closer to be independent
do today to get closer to be independent
do today to get closer to be independent to lead a life with dignity expectations
to lead a life with dignity expectations
to lead a life with dignity expectations and aspirations go a long way I discover
and aspirations go a long way I discover
and aspirations go a long way I discover a home program schooling called applied
a home program schooling called applied
a home program schooling called applied behavior analysis this approach involves
behavior analysis this approach involves
behavior analysis this approach involves the applied use of behavioral principles
the applied use of behavioral principles
the applied use of behavioral principles into everyday situations ABA was
into everyday situations ABA was
into everyday situations ABA was combined with sensory processing
combined with sensory processing
combined with sensory processing intervention the results were
intervention the results were
intervention the results were life-changing Zack started to speak and
life-changing Zack started to speak and
life-changing Zack started to speak and became aware of his surroundings but I
became aware of his surroundings but I
became aware of his surroundings but I must point out
must point out
must point out autistic people are very individual and
autistic people are very individual and
autistic people are very individual and what works for them one does not work
what works for them one does not work
what works for them one does not work for the other as a family we became
for the other as a family we became
for the other as a family we became educators and the consistency between us
educators and the consistency between us
educators and the consistency between us and the tutors made sac closer to be
and the tutors made sac closer to be
and the tutors made sac closer to be independent every day I had to rise up
independent every day I had to rise up
independent every day I had to rise up to the challenge I had given myself I
to the challenge I had given myself I
to the challenge I had given myself I had to become educated to help me be an
had to become educated to help me be an
had to become educated to help me be an informer later on a voice for Southeast
informer later on a voice for Southeast
informer later on a voice for Southeast needs I had to do this in order to be
needs I had to do this in order to be
needs I had to do this in order to be able to make decisions that I knew best
able to make decisions that I knew best
able to make decisions that I knew best for sac instead of others making them
for sac instead of others making them
for sac instead of others making them for me this was the battle against the
for me this was the battle against the
for me this was the battle against the resistance on the cultural molding from
resistance on the cultural molding from
resistance on the cultural molding from the people I belong to if changing sakis
the people I belong to if changing sakis
the people I belong to if changing sakis life was my first mission working with
life was my first mission working with
life was my first mission working with the wider community whose experience I
the wider community whose experience I
the wider community whose experience I mirror my own has been my second
mirror my own has been my second
mirror my own has been my second it was the disruptions in my life were
it was the disruptions in my life were
it was the disruptions in my life were out of my control there was time for me
out of my control there was time for me
out of my control there was time for me to disrupt in my own way
to disrupt in my own way
to disrupt in my own way when I was told that had autism I felt
when I was told that had autism I felt
when I was told that had autism I felt ashamed I was reaching out to my
ashamed I was reaching out to my
ashamed I was reaching out to my cultural attitudes towards disability
but today I am proud of telling a story
but today I am proud of telling a story that changed my life
that changed my life
that changed my life and showed me second I can make it a
and showed me second I can make it a
and showed me second I can make it a story that made me leave my loved ones
story that made me leave my loved ones
story that made me leave my loved ones for an unknown culture and its people
for an unknown culture and its people
for an unknown culture and its people I hope my transformative learning will
I hope my transformative learning will
I hope my transformative learning will help others and
help others and
help others and loved ones can stew their future
loved ones can stew their future
loved ones can stew their future directions in similar circumstances
directions in similar circumstances
directions in similar circumstances after being stuck in the middle for so
after being stuck in the middle for so
after being stuck in the middle for so long I decided to dedicate to bean sack
long I decided to dedicate to bean sack
long I decided to dedicate to bean sack his voice until he has a voice of his
his voice until he has a voice of his
his voice until he has a voice of his own
own
own I used my voice to demand appropriate
I used my voice to demand appropriate
I used my voice to demand appropriate provisions for Zack I started to map the
provisions for Zack I started to map the
provisions for Zack I started to map the progress he has made and then would make
progress he has made and then would make
progress he has made and then would make decisions where the improvement was
decisions where the improvement was
decisions where the improvement was needed or change of providers I realized
needed or change of providers I realized
needed or change of providers I realized his potentials and started taking him to
his potentials and started taking him to
his potentials and started taking him to different activities including aerial
climbing and gym
climbing and gym research shows different physical
research shows different physical
research shows different physical exercises can gain specific mental gains
exercises can gain specific mental gains
exercises can gain specific mental gains especially the autism community for Zack
especially the autism community for Zack
especially the autism community for Zack the benefits were huge I then start
the benefits were huge I then start
the benefits were huge I then start taking him to maths and English tuitions
and supermarkets he hated it was not
and supermarkets he hated it was not easy some days he would cope and some
easy some days he would cope and some
easy some days he would cope and some days he will have a meltdown but with
days he will have a meltdown but with
days he will have a meltdown but with planning visual structure and
planning visual structure and
planning visual structure and perseverance with it he started to enjoy
perseverance with it he started to enjoy
perseverance with it he started to enjoy every activity and became so good at it
every activity and became so good at it
every activity and became so good at it as the famous Temple Grandin says people
as the famous Temple Grandin says people
as the famous Temple Grandin says people with autism are different but not less
my fight back has been
my fight back has been to create community organization called
to create community organization called
to create community organization called autism Independence which mentors
autism Independence which mentors
autism Independence which mentors parents to engage with the system to get
parents to engage with the system to get
parents to engage with the system to get the best outcome for their children to
the best outcome for their children to
the best outcome for their children to ensure that services are integrated and
ensure that services are integrated and
ensure that services are integrated and have high expectations and aspirations
have high expectations and aspirations
have high expectations and aspirations for people with autism my second goal
for people with autism my second goal
for people with autism my second goal for autism independence was to bridge
for autism independence was to bridge
for autism independence was to bridge the gap between professionals and
the gap between professionals and
the gap between professionals and parents this saw me carrying out
parents this saw me carrying out
parents this saw me carrying out research a youth in theater to raise
research a youth in theater to raise
research a youth in theater to raise awareness
awareness
awareness a film by four women including myself
a film by four women including myself
a film by four women including myself all with autistic children going out of
all with autistic children going out of
all with autistic children going out of the house is a real problem we Yusef
the house is a real problem we Yusef
the house is a real problem we Yusef when we go out to the street he can just
when we go out to the street he can just
when we go out to the street he can just run off and it’s just not safe let me go
run off and it’s just not safe let me go
run off and it’s just not safe let me go shopping he shouts and he screams when
shopping he shouts and he screams when
shopping he shouts and he screams when people look at me they say why don’t I
people look at me they say why don’t I
people look at me they say why don’t I discipline my child they just don’t
discipline my child they just don’t
discipline my child they just don’t understand what can I do I don’t
understand what can I do I don’t
understand what can I do I don’t understand are you saying there’s
understand are you saying there’s
understand are you saying there’s something wrong with Yusef mrs. Abdi I
something wrong with Yusef mrs. Abdi I
something wrong with Yusef mrs. Abdi I believe your son has a complex
believe your son has a complex
believe your son has a complex neurological disorder called autism
neurological disorder called autism
neurological disorder called autism autism what is autism I don’t understand
autism what is autism I don’t understand
autism what is autism I don’t understand I never heard of autism before
ultimately my love for sac was greater
ultimately my love for sac was greater than my fear of any cultural protection
than my fear of any cultural protection
than my fear of any cultural protection or community shame he taught me to dare
or community shame he taught me to dare
or community shame he taught me to dare and disrupt in a positive way they said
and disrupt in a positive way they said
and disrupt in a positive way they said my life on a new path and one I would
my life on a new path and one I would
my life on a new path and one I would never have gone on to if it wasn’t for
never have gone on to if it wasn’t for
never have gone on to if it wasn’t for Zack and one that took me to another
Zack and one that took me to another
Zack and one that took me to another course
to be the first in my family to go to
to be the first in my family to go to higher education and prepare a PhD early
higher education and prepare a PhD early
higher education and prepare a PhD early intervention is fico after a diagnosis
intervention is fico after a diagnosis
intervention is fico after a diagnosis of autism parent involvement is
of autism parent involvement is
of autism parent involvement is absolutely crucial however early
absolutely crucial however early
absolutely crucial however early intervention can be very broad in 1997
intervention can be very broad in 1997
intervention can be very broad in 1997 Patricia holing a clinical psychologist
Patricia holing a clinical psychologist
Patricia holing a clinical psychologist from st. George’s Hospital Medical
from st. George’s Hospital Medical
from st. George’s Hospital Medical School in London and her colleague
School in London and her colleague
School in London and her colleague carried out research with over 1200
carried out research with over 1200
carried out research with over 1200 parents with autistic children their
parents with autistic children their
parents with autistic children their children range from 2 to 49 they steady
children range from 2 to 49 they steady
children range from 2 to 49 they steady focus on parent fuze money many parents
focus on parent fuze money many parents
focus on parent fuze money many parents reported falling into a black hole after
reported falling into a black hole after
reported falling into a black hole after a diagnosis with minimal support in my
a diagnosis with minimal support in my
a diagnosis with minimal support in my experience I was in danger for getting
experience I was in danger for getting
experience I was in danger for getting stuck in that black hole it is the
stuck in that black hole it is the
stuck in that black hole it is the vision of expectations that nourish the
vision of expectations that nourish the
vision of expectations that nourish the independence of individuals with autism
independence of individuals with autism
independence of individuals with autism and the independence that leads to the
and the independence that leads to the
and the independence that leads to the first potentials and the rights of every
first potentials and the rights of every
first potentials and the rights of every child under the UN CRC Convention every
child under the UN CRC Convention every
child under the UN CRC Convention every school should have tailor intervention
school should have tailor intervention
school should have tailor intervention for independence
for independence
for independence despite the level of child development
despite the level of child development
despite the level of child development and the same for the parents in the home
and the same for the parents in the home
and the same for the parents in the home environment autism independence gives
environment autism independence gives
environment autism independence gives families practical step-by-step
families practical step-by-step
families practical step-by-step guidelines to everyday situations from
guidelines to everyday situations from
guidelines to everyday situations from doing their shoelaces to using fork a
doing their shoelaces to using fork a
doing their shoelaces to using fork a knife to take notes to school reception
knife to take notes to school reception
knife to take notes to school reception to self-care and planning their day the
to self-care and planning their day the
to self-care and planning their day the three
three
three there help me get stuck where he is
there help me get stuck where he is
there help me get stuck where he is today we’re understanding the autism and
today we’re understanding the autism and
today we’re understanding the autism and the system support is it high
the system support is it high
the system support is it high expectations focusing on the
expectations focusing on the
expectations focusing on the independence in every level and
independence in every level and
independence in every level and discipline myself and having a system to
discipline myself and having a system to
discipline myself and having a system to evaluate monitor and be productive at
evaluate monitor and be productive at
evaluate monitor and be productive at meetings there enables Aki’s development
meetings there enables Aki’s development
meetings there enables Aki’s development my challenge is that we are our
my challenge is that we are our
my challenge is that we are our children’s future and we are their voice
people told me sac would never talk but
people told me sac would never talk but today he shuts up girls in the local
today he shuts up girls in the local
today he shuts up girls in the local climbing center and it’s a well-known
climbing center and it’s a well-known
climbing center and it’s a well-known figure in where we live he used to have
figure in where we live he used to have
figure in where we live he used to have all his decisions made for him today he
all his decisions made for him today he
all his decisions made for him today he plans his day meals and activities it’s
plans his day meals and activities it’s
plans his day meals and activities it’s gone beyond being able to speak he fair
gone beyond being able to speak he fair
gone beyond being able to speak he fair prizes problems and comes up with the
prizes problems and comes up with the
prizes problems and comes up with the most incredible creative solutions he
most incredible creative solutions he
most incredible creative solutions he has learned he has a power of agency and
has learned he has a power of agency and
has learned he has a power of agency and self efficacy he leads his own life and
self efficacy he leads his own life and
self efficacy he leads his own life and makes his own choices he’s very happy
makes his own choices he’s very happy
makes his own choices he’s very happy and fun to be with and he’s always
and fun to be with and he’s always
and fun to be with and he’s always making people laugh his charm and
making people laugh his charm and
making people laugh his charm and happiness it’s really really contagious
happiness it’s really really contagious
happiness it’s really really contagious no more us than them now but a hero and
no more us than them now but a hero and
no more us than them now but a hero and a role model it’s only fair sac has the
a role model it’s only fair sac has the
a role model it’s only fair sac has the last day of my talk
[Music]
[Music] you
”
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