Kathleen originally wrote a story about her son Christopher when he was 15 months old in 1999.
In 1997 I married my second husband. I already had three children from
my first marriage, and I didn't know if I wanted to have more children.
Ultimately, the trusting, romantic side of me agreed to have another
child
with my new, enthusiastic husband, who desperately desired a child of
his
own. On Father's Day 1998, I gave birth to a beautiful, very blonde
baby
boy whom we named Christopher.
When Christopher was delivered, the doctor placed him on my chest. The first thing I noticed was how squiggly he was and how strong he held up his neck. The second thing my family and I noticed was how very blonde and light complexioned he was. Then I looked at him and I realized that he was beautiful. As the weeks passed following Christopher's birth, I would also come to realize how fussy my baby was. He wasn't a very good nurser either. He tried really hard and he latched on well but he would pull off frequently and he never seemed satisfied. He also didn't sleep much. He would take short, erratic naps and then be up fussing again for longer periods. On top of it all he had constant reflux. Colic was the label for the first four months. My first child had been colicky so I anxiously awaited the end of colic around five months. By six months nothing had improved. I had long since given up on nursing way back in the tenth week finding the bottle worked a little better.
Christopher was difficult to hold and seemed to do better with a
pillow.
Then there were the occasional staring spells that could have been
staring
but seemed long for a baby. The pediatrician didn't seem too concerned
until around eight months when Christopher was not reaching any
milestones.
He was still physically much like a newborn. At ten months Christopher
had his first seizures. We were very lucky that by the eleventh month
our
son had a diagnosis. He has Angelman Syndrome (AS), which is a genetic
disorder resulting in severe neurological traits including lack of
speech,
mental retardation, and developmental delay. His light coloring is also
a common trait as well as many of the other things he did as an infant.
We learned that our baby would always be like a child. He will always
need
one-on-one care. I learned that I love my children unconditionally.
Unfortunately,
my marriage disintegrated during Christopher's first year. Lack of
sleep
and different methods of coping drove us apart. We never had a chance
to
spend anytime together. Family and friends seemed intimidated by the
diagnosis.
After the diagnosis we qualified for respite hours, but it took me another year to figure out the system and all the things I needed to do to get respite. It took me even longer to figure out how to go to work with a child with special needs who needs one-on-one care. I don't have it all figured out yet because the system is confusing and consuming. I spend many hours every month, sometimes every week trying to keep respite and aide funding as well as trying to keep the support workers. The paper work and phone calls take a great amount of time away from my entire family. I find getting respite almost too much work to make it worth it. And so I have developed a dream. I dream of a respite and care center for special children. I want to have a place where families can drop their children off and know that their child is getting one-on-one care, perhaps from their own hired support worker. This would be a place that would be structured around individual needs as well as special needs. This would be a place where support workers would be able to support one another. It would be a reliable alternative to what so many parents have been forced to take on by themselves. Our children get to be with other children in school but this would be a place where they can be around children who have special needs too. Everyone likes to feel comfortable and our children have that right as well as the right to be a part of society. As parents we have a right to strive for as normal a life as possible while keeping our special children at home but we need help. We need reliable help.
I would like to get interested parents together to discuss a care center. If my dream sounds like something that interests you, please contact me at kathydemo@aol.com or (802)862-6760. I believe the first step begins with interested parents. ©