Friday, May 31, 2013

Special Needs Spotlight: J and B



 
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.

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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?

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.

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.


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?  

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.

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.


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?  

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.


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?  

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!!

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.

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?  

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.


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?

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.

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.


Miggy:  Gaye, 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.

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?

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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!  
  


5 comments:

  1. 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!

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  2. 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.

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  3. 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.

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  4. Wow! Such an inspiration. Thank you for sharing your story

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  5. Gaye, this was so inspiring and emotional for me to read. Thank you so much for being such a positive force in the world!!

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