Hello Miggy. Thanks for the opportunity to tell some
of our story. It is a complex story so I will do my best to keep it short. My
name is Gaye and my ex partner’s name is C. When still together we fostered two
babies 4 years apart–J when he was 4 months old and B when he was 5 weeks old.
They are not biologically related and
both sets of the parents have intellectual disabilities. The boys have a range of conditions. J has two congenital conditions, a complex
congenital heart and congenital toxoplasmosis. The latter neurological condition has resulted
in mild cerebral palsy, ADHD, learning, perceptual and cognitive processing
disabilities, global language delay, autistic spectrum disorder and severe
kyphosis-scoliosis. J is not
intellectually disabled and is now 23 years old. B had severe gastric reflux that needed
surgical repair. He has as a result of
this condition had an aversion to eating and has had long history of anorexia. B also has generalized anxiety, clinical
depression, panic disorder and cognitive processing disorder. B is a gifted and talented student at
university. He is 19 years old.
of our story. It is a complex story so I will do my best to keep it short. My
name is Gaye and my ex partner’s name is C. When still together we fostered two
babies 4 years apart–J when he was 4 months old and B when he was 5 weeks old.
They are not biologically related and
both sets of the parents have intellectual disabilities. The boys have a range of conditions. J has two congenital conditions, a complex
congenital heart and congenital toxoplasmosis. The latter neurological condition has resulted
in mild cerebral palsy, ADHD, learning, perceptual and cognitive processing
disabilities, global language delay, autistic spectrum disorder and severe
kyphosis-scoliosis. J is not
intellectually disabled and is now 23 years old. B had severe gastric reflux that needed
surgical repair. He has as a result of
this condition had an aversion to eating and has had long history of anorexia. B also has generalized anxiety, clinical
depression, panic disorder and cognitive processing disorder. B is a gifted and talented student at
university. He is 19 years old.
***************
Miggy: Gaye, when I first read your story I was
overwhelmed with the amount of information regarding your sons and the care
they have needed over the years. So lets start at the beginning. You
are their foster mom and have been for quite some time (20 years?!). Can
you explain a little about the foster program in Australia and what is means to
be a foster mom?
overwhelmed with the amount of information regarding your sons and the care
they have needed over the years. So lets start at the beginning. You
are their foster mom and have been for quite some time (20 years?!). Can
you explain a little about the foster program in Australia and what is means to
be a foster mom?
Gaye: I have been a specialized foster mum for 23
years. I was unable to have children and chose to become a foster carer because
I wanted to love and care for children in my home. I had worked with children with disabilities
from the time I left school at 15 years of age and 45 years later I am still
working in management in the disability sector. I have had other short-term emergency foster
children over the years but J and B have been with me from the time they were
put in my care and remain part of my family now they have aged out of care. I have become J’s legal Guardian.
years. I was unable to have children and chose to become a foster carer because
I wanted to love and care for children in my home. I had worked with children with disabilities
from the time I left school at 15 years of age and 45 years later I am still
working in management in the disability sector. I have had other short-term emergency foster
children over the years but J and B have been with me from the time they were
put in my care and remain part of my family now they have aged out of care. I have become J’s legal Guardian.
Both boys were in State Care
and as a foster carer I received a foster subsidy with special needs loading
for J. In some ways because I was highly
qualified I had little intervention from caseworkers but also limited support. I am eternally grateful for the opportunity to
be a foster mum and to love and care for two babies and to have them be a part
of my family until today when they are young men moving toward living independently.
It has been precious gift.
and as a foster carer I received a foster subsidy with special needs loading
for J. In some ways because I was highly
qualified I had little intervention from caseworkers but also limited support. I am eternally grateful for the opportunity to
be a foster mum and to love and care for two babies and to have them be a part
of my family until today when they are young men moving toward living independently.
It has been precious gift.
Miggy: Now both your sons have some medically
complex issues, did you know this upfront when you agreed to foster them?
How did you cope with the continual issues that would pop up every few
years?
complex issues, did you know this upfront when you agreed to foster them?
How did you cope with the continual issues that would pop up every few
years?
Gaye: I requested to have children with
disabilities put into my care. I knew I
had the skills, understanding and patience to provide a rich environment for a
child. Prior to fostering J I was
facilitating an independence-training workshop in health and safety for young
people with disabilities who were moving from the family home into the
community. J’s parents attended this
workshop with J when he was about 4 weeks old on two occasions. I had held him and fallen in love with this cyanotic
blue-eyed baby. I heard weeks later he
had been taken into care and then a few months later I was asked to take him. Of course I said yes as I leap around the room
in total excitement and 4 days later he was put into my care. I knew he had cerebral palsy from the first
day but it took three years for this to be formally diagnosed. J’s was followed through his infancy to
preschool years through our local pediatric hospital and his physical,
learning, perceptual and behavioral disabilities were evident from an early
age. I use the Hawaii Early Leaning
Program to teach him skills and loved the challenge of developing this young
boy. Later when his behaviours became
more challenging and he was diagnosed in the autistic spectrum I was relieved
because I knew there was more happening with him. In puberty he developed
severe kyphosis and scoliosis and the next few years were the hardest with
serious complication during his spinal repair and this condition tipped the
balance in terms of my being able to cope. It was at this time I had issues
happening with the other members of my family.
disabilities put into my care. I knew I
had the skills, understanding and patience to provide a rich environment for a
child. Prior to fostering J I was
facilitating an independence-training workshop in health and safety for young
people with disabilities who were moving from the family home into the
community. J’s parents attended this
workshop with J when he was about 4 weeks old on two occasions. I had held him and fallen in love with this cyanotic
blue-eyed baby. I heard weeks later he
had been taken into care and then a few months later I was asked to take him. Of course I said yes as I leap around the room
in total excitement and 4 days later he was put into my care. I knew he had cerebral palsy from the first
day but it took three years for this to be formally diagnosed. J’s was followed through his infancy to
preschool years through our local pediatric hospital and his physical,
learning, perceptual and behavioral disabilities were evident from an early
age. I use the Hawaii Early Leaning
Program to teach him skills and loved the challenge of developing this young
boy. Later when his behaviours became
more challenging and he was diagnosed in the autistic spectrum I was relieved
because I knew there was more happening with him. In puberty he developed
severe kyphosis and scoliosis and the next few years were the hardest with
serious complication during his spinal repair and this condition tipped the
balance in terms of my being able to cope. It was at this time I had issues
happening with the other members of my family.
B was the 10th
child of the couple and 5 of his siblings have intellectual disabilities. He was taken into care at 2 days of age and
into my care at 5 weeks. It was unknown if he would be disabled. His language was delayed but it was obvious to
me very early on this child was very aware and smart. B’s anxiety, depression, panic and eating
disorder were stressful because of having to balance caring for him along with J’s
care needs and the demands. B was a
highly sensitive and intuitive child and I programmed my day to make time for
just for him. I have at various time
attending counseling, family therapy, I used phone help lines often at 3am when
I couldn’t sleep. I took each day as it
came and where possible took time out for myself.
child of the couple and 5 of his siblings have intellectual disabilities. He was taken into care at 2 days of age and
into my care at 5 weeks. It was unknown if he would be disabled. His language was delayed but it was obvious to
me very early on this child was very aware and smart. B’s anxiety, depression, panic and eating
disorder were stressful because of having to balance caring for him along with J’s
care needs and the demands. B was a
highly sensitive and intuitive child and I programmed my day to make time for
just for him. I have at various time
attending counseling, family therapy, I used phone help lines often at 3am when
I couldn’t sleep. I took each day as it
came and where possible took time out for myself.
Miggy: I know your sons are grown now, but when they
were younger can you explain how their needs and conditions affected your
day-to-day life?
were younger can you explain how their needs and conditions affected your
day-to-day life?
Gaye: J’s condition affected our day-to-day life
and still does when he is with me. His
heart condition initially and his medical fragility was the main impact for the
first three years. After the final
repair he was in good cardiac health and it was as if the go button was pushed.
He was diagnosed with atypical ADHD and the main concern was he had no awareness
of safety. He had to be supervised at all
times. He has a hemiplegia with his
right side affected and this meant he had problems with balance and would fall
easily. Once mobile he was the wild
child from about 4 years old until about 10 when his back condition started to
slow him down. He was put in a full back
brace to try and stop the progressive of deterioration of his spine. This was when life started to get very hard. He was not toilet trained until he was 13
years old; he sweated profusely because of his cardiac condition and his
sensory overload made getting and keeping the back brace on very difficult. He was in a lot of pain and had restrictive
airway disease due to the compression of his lungs. I suffer a significant number of injuries from
trying to keep his back brace on. As a
result of his conditions I have at various times had to stop working to care
for him and this had a huge impact financially. I had to sell the family home and buy a
cheaper home further away from my social network. B needed counseling from a young age and the
constant stressor of him not eating really challenged me as a mother. I had to have my emotional sensor working at
all time to keep a check on his mental health. Now he is older he has taken control of this
and doing so much better.
and still does when he is with me. His
heart condition initially and his medical fragility was the main impact for the
first three years. After the final
repair he was in good cardiac health and it was as if the go button was pushed.
He was diagnosed with atypical ADHD and the main concern was he had no awareness
of safety. He had to be supervised at all
times. He has a hemiplegia with his
right side affected and this meant he had problems with balance and would fall
easily. Once mobile he was the wild
child from about 4 years old until about 10 when his back condition started to
slow him down. He was put in a full back
brace to try and stop the progressive of deterioration of his spine. This was when life started to get very hard. He was not toilet trained until he was 13
years old; he sweated profusely because of his cardiac condition and his
sensory overload made getting and keeping the back brace on very difficult. He was in a lot of pain and had restrictive
airway disease due to the compression of his lungs. I suffer a significant number of injuries from
trying to keep his back brace on. As a
result of his conditions I have at various times had to stop working to care
for him and this had a huge impact financially. I had to sell the family home and buy a
cheaper home further away from my social network. B needed counseling from a young age and the
constant stressor of him not eating really challenged me as a mother. I had to have my emotional sensor working at
all time to keep a check on his mental health. Now he is older he has taken control of this
and doing so much better.
Miggy: For many of us moms of younger children with
special needs I know we’re anxious about the school years–about bullying and
fitting in. Can you talk a little about your sons’ experiences in school.
What were some of the triumphs and challenges? How did they
and you overcome difficulties?
special needs I know we’re anxious about the school years–about bullying and
fitting in. Can you talk a little about your sons’ experiences in school.
What were some of the triumphs and challenges? How did they
and you overcome difficulties?
Gaye: In W. Australia where we live there are 4
levels of schooling for children with disabilities. Initially J was in mainstream schooling with
aide time. In 2nd yr of
primary schooling he was moved to an education support unit in a mainstream
school because of behavioral issues. In
high school he moved to an educational support center, which is a separate
school next to a mainstream school with integration for non-academic subjects. The other option is a special needs school
that J was too able for. J was bullied
and teased right through school. I
worked as a protective behaviours educator so he had been taught a range of
skills to cope and I worked closely with the school. The challenge was to get him to school each
day, keep him there and make sure he didn’t melt down and hurt others. The triumphs was that he completed schooling
with no major incidents apart from being suspended for two months after he hit
a teacher’s aide. It could have been far
worse!!
levels of schooling for children with disabilities. Initially J was in mainstream schooling with
aide time. In 2nd yr of
primary schooling he was moved to an education support unit in a mainstream
school because of behavioral issues. In
high school he moved to an educational support center, which is a separate
school next to a mainstream school with integration for non-academic subjects. The other option is a special needs school
that J was too able for. J was bullied
and teased right through school. I
worked as a protective behaviours educator so he had been taught a range of
skills to cope and I worked closely with the school. The challenge was to get him to school each
day, keep him there and make sure he didn’t melt down and hurt others. The triumphs was that he completed schooling
with no major incidents apart from being suspended for two months after he hit
a teacher’s aide. It could have been far
worse!!
B underachieved from day 1
until he was 14 years old. There was a
huge discrepancy in verbal intelligence and the work he was producing. He was assessed at the neuropsychological unit
when he 10 years old to have a cognitive processing disorder particular in visual
processing which was at the 1%. He is a
kinesthetic learner. Knowing this didn’t
help though and it wasn’t until a wonderful teacher mentored him and allowed
him to pace in the back of the room during class and referred him to the
educational support services for gifted and talented students that he started
to make gains at school. He successfully
completed high school and is now in his 3rd year of university doing physics,
chemistry and nanotechnology. He reads
philosophy and composes music in his spare time.
until he was 14 years old. There was a
huge discrepancy in verbal intelligence and the work he was producing. He was assessed at the neuropsychological unit
when he 10 years old to have a cognitive processing disorder particular in visual
processing which was at the 1%. He is a
kinesthetic learner. Knowing this didn’t
help though and it wasn’t until a wonderful teacher mentored him and allowed
him to pace in the back of the room during class and referred him to the
educational support services for gifted and talented students that he started
to make gains at school. He successfully
completed high school and is now in his 3rd year of university doing physics,
chemistry and nanotechnology. He reads
philosophy and composes music in his spare time.
J feeding B
Miggy: Now for a
lighter question, I’m a big believer in seeing the humor in life and learning
to laugh, so have you ever had any funny conversations/moments you never
imagined due to your special needs situations?
lighter question, I’m a big believer in seeing the humor in life and learning
to laugh, so have you ever had any funny conversations/moments you never
imagined due to your special needs situations?
Gaye: An ongoing source of humor in our family and
with friends is J’s love of exhaust pipes. This started from a young age and this was
always a dangerous pursuit at that age. When
out driving he always notices exhaust pipes whether they are round or oval, if
there is 2 or one, how it is positioned etc.
He learned to draw through his love of exhaust pipes because I would
give him paper and pencils in the car to keep him occupied and he would draw
them. His love of music came when he
realized that piccolos, flutes and didgeridoos where all the same shape as
exhaust pipes. One of his favorite
pieces of music is Tubular Bells. My
friends will ring me and say they saw an exhaust pipe that J would have loved
and the fact that we all now notice exhaust pipes is a great source of humor
for family and friends.
with friends is J’s love of exhaust pipes. This started from a young age and this was
always a dangerous pursuit at that age. When
out driving he always notices exhaust pipes whether they are round or oval, if
there is 2 or one, how it is positioned etc.
He learned to draw through his love of exhaust pipes because I would
give him paper and pencils in the car to keep him occupied and he would draw
them. His love of music came when he
realized that piccolos, flutes and didgeridoos where all the same shape as
exhaust pipes. One of his favorite
pieces of music is Tubular Bells. My
friends will ring me and say they saw an exhaust pipe that J would have loved
and the fact that we all now notice exhaust pipes is a great source of humor
for family and friends.
Miggy: Not only did
you take care of 2 foster sons, but you also ended up being the caregiver
for your partner as well–even though you were no longer together! How
did you manage to do this by yourself? Any wisdom to share with us
special needs moms and moms in general about managing your time and energy?
you take care of 2 foster sons, but you also ended up being the caregiver
for your partner as well–even though you were no longer together! How
did you manage to do this by yourself? Any wisdom to share with us
special needs moms and moms in general about managing your time and energy?
Gaye: My ex partner C developed clinical depression
when the boys were young and self-medicated rather then seek medical help for 5
years. He developed bi-polar when finally
put on medication. We separated within
the family home when J was 9 and B was 5 and he left the family and house 3
years later. He was not able to work
during the period of his breakdown or since. During a maniac episode he was assaulted and
had critical head injuries. He was on
life support for 10 days not expected to survive. He did recover but absconded from hospital and
would not go to rehab to be assessed for long-term problems from the acquired
brain injury. I managed to get emergency
housing for him and for two years I supported him to relearn to cook, clean,
make decision, get to appointments etc. This was at the time J’s spine was in
rapid deterioration, he was suspended from school and in a lot of pain. B was self-harming and anorexic. I stopped working to care for them all. I really don’t know how I survived the next 5
years. It is all a bit of a blur. I was pretty much house bound with little
money and no respite. I found the Internet
and phone help lines along with the support of two special friends one who
could manage J and the other who helped out financially when times where very
tough. I managed to find internet groups
like pdheart, heartline, ADHD and autistic supports, spinekids and self
harming, anorexic supports and living with a child with anxiety and depression
and acquired brain injury groups. The
information and discussion from the people in these groups helped me to know
that I wasn’t the only one dealing with tough stuff. It got me through each day just to vent and
have people understand.
when the boys were young and self-medicated rather then seek medical help for 5
years. He developed bi-polar when finally
put on medication. We separated within
the family home when J was 9 and B was 5 and he left the family and house 3
years later. He was not able to work
during the period of his breakdown or since. During a maniac episode he was assaulted and
had critical head injuries. He was on
life support for 10 days not expected to survive. He did recover but absconded from hospital and
would not go to rehab to be assessed for long-term problems from the acquired
brain injury. I managed to get emergency
housing for him and for two years I supported him to relearn to cook, clean,
make decision, get to appointments etc. This was at the time J’s spine was in
rapid deterioration, he was suspended from school and in a lot of pain. B was self-harming and anorexic. I stopped working to care for them all. I really don’t know how I survived the next 5
years. It is all a bit of a blur. I was pretty much house bound with little
money and no respite. I found the Internet
and phone help lines along with the support of two special friends one who
could manage J and the other who helped out financially when times where very
tough. I managed to find internet groups
like pdheart, heartline, ADHD and autistic supports, spinekids and self
harming, anorexic supports and living with a child with anxiety and depression
and acquired brain injury groups. The
information and discussion from the people in these groups helped me to know
that I wasn’t the only one dealing with tough stuff. It got me through each day just to vent and
have people understand.
I took one day at a time. I
let go of things that were not so important including housework so I could look
after myself. Sometimes packing us up
and going out for a picnic was more important then vacuuming.
let go of things that were not so important including housework so I could look
after myself. Sometimes packing us up
and going out for a picnic was more important then vacuuming.
Miggy: Gaye,
is there anything else you’d like us to know about this incredible journey and
life you’ve led?
is there anything else you’d like us to know about this incredible journey and
life you’ve led?
Gaye: Over the last 5 years my life had gradually
returned to a much slower rollercoaster. J lives in accommodation support and comes
stays with me once a month and holidays. B is doing really well at uni and apart from
occasional panic attacks his mental health is pretty good. He still has an aversion to eating and takes a
daily hospital supplement so he has the vitamins and minerals he needs to
function. C still self medicates but his
bipolar is not cycling as severely and he has a reasonable life. We remain friends and I assist him to
participate in family events so he sees the boys.
returned to a much slower rollercoaster. J lives in accommodation support and comes
stays with me once a month and holidays. B is doing really well at uni and apart from
occasional panic attacks his mental health is pretty good. He still has an aversion to eating and takes a
daily hospital supplement so he has the vitamins and minerals he needs to
function. C still self medicates but his
bipolar is not cycling as severely and he has a reasonable life. We remain friends and I assist him to
participate in family events so he sees the boys.
I have had to go back to
full time work to manage financially because I am still supporting the family. I work as a coordinator for a disability
respite service, which is ironic that I was never able to access respite when I
needed it. I am ready to retire and put
my feet up for a bit but working for a bit longer so I can have a holiday. When I reflect on my life and what I have
achieved I have overcome immeasurable hurdles.
My young men are sensitive, sensible, and competent and have a strong
sense of social justice. We love each
other and we are a family. What more
could a mum want?
full time work to manage financially because I am still supporting the family. I work as a coordinator for a disability
respite service, which is ironic that I was never able to access respite when I
needed it. I am ready to retire and put
my feet up for a bit but working for a bit longer so I can have a holiday. When I reflect on my life and what I have
achieved I have overcome immeasurable hurdles.
My young men are sensitive, sensible, and competent and have a strong
sense of social justice. We love each
other and we are a family. What more
could a mum want?
***************
What more could a mum want indeed? There are so many places to look for goodness and inspiration in the world. Personally I always find those who go about their life quietly tackling difficult challenges and circumstance to be among the most inspiring people. Gaye, you inspire me. You are a beautiful, strong, courageous and giving mother. It was an honor to feature your story today. You know when I’ve talked to people about becoming a special needs mom and how it caught me by surprise and that it’s not the path I initially envisioned for myself, I’ve had a few people comment, “Well no one would, no one would choose to have a child with special needs.” I am always quick to remind them that that’s not true–there are people who willingly adopt or foster children with special needs all the time. I can’t tell you how much respect and love I have for those who very purposefully choose to have children with special needs in their home. My respect also reaches to those who have chosen career paths in which they also work with and serve the special needs community. God bless you Gaye. You are an example of someone who has truly chose the road less traveled and what a difference it has made–especially for J and B. Thank you so much for sharing your life and your family with us today. Much love to you.
As always if you or someone you know would like to participate in the special needs spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com.
Have a great weekend!
Gaye, I have undending respect for you. What an amazingly strong and loving person you are. Thank you so much for sharing your story—what an inspiration you are! And your sons are amazing as well. What brave souls you have helped care for!
Gaye, I love reading your story, and I echo Miggy's sentiments. I would never have chosen to have an autistic daughter, and it humbles me to hear of people who have chosen to give up their quality of life (sleep, money, travel, friends, etc.) to raise kids with extra challenges. These stories remind me how much joy and meaning is imbued in these experiences – that it's not something to shy away from or fear. Thank you.
As a foster mum in Australia I was very interested to read of your experience. I take my hat off to you, we have had some placements for years where we were dealing with some extra challenges but not to the extent of your boys. We went into foster care as we really wanted to share our lives with children but I am the person in our house with the health issue, a serious uncorrected CHD that meant pregnancy was a big no no. I always love reading the spotlights to see some of the others out there, like these lovely boys, defying the odds & making a real go of life under trying circumstances.I'm sure reading these really brings some hope to families who aren't given a very positive outlook for their child. My parents were told I would survive 6 months, here I am in my 40's & I have always fought to get the most out of life.
Wow! Such an inspiration. Thank you for sharing your story
Gaye, this was so inspiring and emotional for me to read. Thank you so much for being such a positive force in the world!!