The Evolution of a SelfDetermined Mother

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The Evolution of a Self-Determined Mother

• One mothers account of the miracle of life, the
  heart-break of disappointment and the realization
  of her own foolishness.

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This presentation is meant to be

• A personal account of one mothers journey, from
  pre-pregnancy and beyond.
• An explanation of what I have learned as a mother
  of a child with a disability.
• A message of empowerment and encouragement for
  families.
• Insight into the life of one family, navigating
  the system.

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What this presentation is not

• It is not backed by scientific evidence, outcome
  based research, or any expert, of any kind, other
  than that of mea mother (which is the most
  important expert when it come to your own child.)
• It is not an intent to change what your family is
  currently doing to support your loved one. It is
  simply a story of what has worked for me and my
  family and what I intend to do in the future with
  my own son to help him become a self-determined,
  independent and empowered adult.

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A Brief Summary of Myself Married for 7
Years to a wonder man named Bobby I have a 3 year
old daughter named Summer and a 4 year old son
named Carter My degree is in Health Care
Administration I have worked as a Service
Coordinator for the Camden County Senate Bill
40 I am currently a Service Coordinator for
Missouri First Steps Early Intervention I am also
president and co-founder of The Arc of the Lake I
am a Partners in Policymaking graduate.
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Our Family
Carter
Bobby
Angela
Summer
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The Decision
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To conceive or not to conceive, that is the
question.
AH! What the Heck! Lets have a baby
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Honey, I Pregnant!!!
President? Brain Surgeon? The world is his
oyster.
Hi Mom!!!
Carter
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So Much To Do, and Only 9 Months To Do It

• Tell your family and friends
• Read an endless number of baby books
• Get the nursery ready
• Baby Shower
• Dream about the little baby
• you have yet to meet
• Put together baby furniture
• Research birthing methods
• Lamaze
• Doctors appointments
• Finding out if its a boy or a girl
• Research how much time you can take off from work
• Research daycare options
• Experience the immeasurable excitement about how
  your life is about to change forever.

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Theres a Problem

• 35 weeks gestation Enlarged ventricles in the
  brain????
• Wait and see!!! What a cruel joke!
• Hydrocephalus??? What the Heck is Hydrocephalus?
• 36 weeks Emergency C-Section This is not how
  its supposed to go!!!
• December 10th 2004 at 333 pm our precious Carter
  arrives in our lives.

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Worried
Excited
Happy
Scared
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• My first thoughts My perfect angel, how can
  they possibly think there is something wrong with
  you

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Let the healing begin

• From day one I was told Dont worry, well do our
  best to fix him.
• Brain Surgery at 2 days
• Severe Jaundice
• Tube, wires, feeding issues

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A miraculous 6 days later we took our baby Carter
home.

• While waiting in the lobby for the doctors
  to do one more exam of Carter before they
  released him to are very incapable hands, we were
  visited by the lead pediatric physician who
  proceeded to tell us that Carter was a ticking
  time bomb just waiting to go off. He said that
  he felt very sorry for us being so young and
  having a handicapped child.

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3 Months of Happiness

• Typical development for 3 months
• Early intervention
• Good reports from the neurologists
• Everything is going to be just fine
• And then

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The Saga Begins

• Not tracking objects
• Eyes moving back and forth
• Tight leg muscles
• Physical Therapist recommends a trip to the
  neurologist.

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The Doctors Appointment That Changed Our Lives
forever

• He doesnt look good
• He has Cerebral Palsy and Nystagmus
• See you in 3 months
• No explanation, no list of resources, nothing!

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Who Is This Baby???

• Now What?
• What do we do?
• How will his diagnosis effect his life?
• What will he do when he grows up?
• Will he be able to go to regular school.
• Will he have friends?
• Will people make fun of him?
• This is not the same baby I walked into the
  doctors office withor is he?

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So Much To Do, and Only 9 Months To Do It

• Tell your family and friends
• Read an endless number of baby books
• Get the nursery ready
• Baby Shower
• Dream about the little baby
• you have yet to meet
• Put together baby furniture
• Research birthing methods
• Lamaze
• Doctors appointments
• Finding out if its a boy or a girl
• Research how much time you can take off from work
• Research daycare options
• Experience the immeasurable excitement about how
  your life is about to change forever.

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What Now???

• Search the internet of course.
• Completely freak out.
• Cry for days.
• Wallow in my own self-pity.

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A re-cap of what I was told by the doctors

• Your baby is a ticking time bomb
• I feel so sorry for you because you are so young
  and you have a handicapped child
• Dont worry, well fix him
• He has Cerebral Palsy and Nystagmus
• Youll just have to wait and see

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Revelation

• Early Intervention
• Thank goodness for Collette Watersworth, Physical
  Therapist!
• A note to providers of services Your opinion
  and knowledge can change the life of a family for
  better or for worse.
• Hope for the future

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Zoom Ahead

• Our transition from California Early Intervention
  to Missouri First Steps.
• Kudos to the therapists yet again.
• Mommy goes to work for the Camden County
  Developmental Disability Resources.
• Mommys eyes are opened to the realities of
  having a child with a disability and what lays
  ahead and shes not sure she likes what she is
  seeing. (2007)
• Partners in Policymaking (2008)

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My Beliefs Before the Light Bulb Went Off
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My beliefs After the Light Bulb Went Off
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So What Can I Do Now To Help Carter Become and
Independent and Self-Determined Advocate For
Himself?

• Carter is a part of his IEP meetings. His
  participation is limited now being that he is
  only 4, but with continued effort to include him
  in his educational plan, he we grow and learn
  that he has the ability to determine what he
  feels are services and supports that he needs.
• Doctors are instructed to speak directly to
  Carter.
• Carter is informed of his disability and is
  learning gradually as he get more mature what
  affects him. For example, at this age, he knows
  he has a shunt in his head that cannot be bumped
  and if it is to tell an adult. He also knows
  that he has wobbly eyes. He can tell people
  when they ask him why his eyes move Thats
  just the way I am.
• Carter has always been encouraged to speak his
  mind and to tell people that he does not like
  something. You often hear Carter tell his
  Para-educator to leave him alone, I can do it
  myself.

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My Vision of Carters Future

• My vision will most likely be very different from
  Carters vision. But if I had my way he would
  live in his own apartment, go to college, get a
  job, and eventually get married.
• At this point he would rather be an animal
  rescuer like Diego, Doras Cousin, and live with
  me forever.

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• It is my belief that what he wants to accomplish
  his choice. What he wants to do, where he wants
  to live and how he wants to spend his day are
  choices that he needs to make as an adult.
• It is my duty as his parent to encourage this
  independence and empowerment now, while he is
  young, and continue to encourage him though out
  his school career and in life.

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• What I have learned over my short 4 year period
  as a mom to a child with a disability
• Carter is fine just the way he is. He does not
  need to be fixed.
• Carter may have his little quirks, but I would
  not trade them for the world.
• His disabilities are what make him unique.
• People who know Carter are typically changed for
  the better.
• Carter has a sense of humor that can crack any
  body up.
• He has a way about him that makes people give in
  to his requests.
• He is strong willed, but a gentle soul.
• He loves his family.
• He does not make friends easily but when he does,
  they are very special to him.
• He has big dreams in life, even for such a little
  guy.
• It takes a while for him to warm up to a new idea
  or activity. But when he does he is willing to
  do anything.
• He is NOT afraid of social situations and loves
  to hang out with adults.

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Services We Have Utilized over the Years

• California Early Intervention
• Missouri First Steps
• Missouri Department of Developmental Disabilities
• Judevine The Central Missouri Autism Project.
• Early Childhood Special Education

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Closing remarks

• As a parent, always remember, although it may
  be hard at times, your child, disability or not,
  has a mind of their own. They have wants,
  dreams, and desires just like anyone else. They
  may not be able to express it but if you listen
  and watch closely, you will eventually be able to
  understand what they are trying to tell you.

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Service Providers and Service Coordinators

• Please remember that the families and individuals
  you are working with rely on you and your
  expertise. You are the first line in helping
  families realize their dreams for independence.
• You are have the unique ability and access to
  families in struggle Individuals who are
  seeking independence. Parents who are looking
  for hope. You are the ones who can make a huge
  difference in these lives.

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Thank You for Listening

• If you have any questions
• please contact me at
• agourley_at_arcofthelake.com