Where has the time gone? Here is my daughter, starting 2nd grade tomorrow, who seemed like just yesterday she was beginning to walk.
Last night was an open house at the school, where we got to meet the teachers and other children that will be with Zoe for the year. Luckily for us, it is mostly the same kids and teachers as last year.
After we got to the school, we entered into the classroom where the teachers were waiting on the kids to arrive. Zoe looked up, saw her teachers from last year and smiled from ear to ear. She immediately said "OOOOOOOOOOO", which is what she calls one of her teachers. She ran over and gave her a hug, and then went to the other teachers and did the same.
It was nice to see the other kids as they made their way into the room. They all remembered Zoe, and said Hi to her. She smiled and replied "Hewwwo". I think she is excited for school to begin.
Our little girl is growing up quickly.
Tuesday, August 31, 2010
Tuesday, August 24, 2010
Frustrating Moments
Last night my wife told me a story of a family who has 2 children in our community, who have special needs. Without going into too much detail, they are having problems with the local school district. After my wife had informed me what was going on, I was so frustrated.
In a nut shell, one of the people in authority with the district finally came out and told this family their child did not belong with the typically developing children. This person went on to say the other kids (typically developing) would not play with them on the playground, so they should keep them out of that class room setting.
Wow. A child has no reservations, and wants to play with other kids. They don't know the hatred yet towards someone who is different, until we have people telling them to do so. What makes our child different than any others?
When will society wake up and realize just because someone is different in their own way, they have a heart and feelings? Do we have so far to go still? A child has no reservations towards people, until they are taught to be so.
But to have this come from a person within the school district is just mind blowing.
FRUSTRATED!
In a nut shell, one of the people in authority with the district finally came out and told this family their child did not belong with the typically developing children. This person went on to say the other kids (typically developing) would not play with them on the playground, so they should keep them out of that class room setting.
Wow. A child has no reservations, and wants to play with other kids. They don't know the hatred yet towards someone who is different, until we have people telling them to do so. What makes our child different than any others?
When will society wake up and realize just because someone is different in their own way, they have a heart and feelings? Do we have so far to go still? A child has no reservations towards people, until they are taught to be so.
But to have this come from a person within the school district is just mind blowing.
FRUSTRATED!
Wednesday, August 18, 2010
Food for thought
There are many times in life we take things for granted. One of them is the simple task of feeding your face. We eat breakfast, lunch, dinner and many times throughout the day we snack on things which taste good to us. Once we learn this at an early age, we just go through the process.
Many people are not capable of performing this task, due to one reason or another. For Zoe, it is a complicated process to eat through the mouth. When she left from the hospital at 8 months old, Zoe ate like a typical child does, from a bottle. At that time, we thought everything was going to be smooth sailing.
1 year after leaving the hospital, we ran into a situation that required some immediate attention. Zoe quit taking the bottle by clamping down and not eating at all. At that time, she weighed 16 pounds. We had the hardest time feeding her, and she began to lose weight. After many doctor's visits and tests, we found out she had very bad reflux, which made eating painful for her. We were put into a situation that needed a solution in a hurry.
We met with a wonderful surgeon, who had performed an operation on her when she was only 2 days old. He recommended having a feeding tube installed, and explained the whole procedure. It was hard to agree to, but we figured that was our only option as normal bottle feeds were not working.
Zoe has been using the feeding tube now for about 6 years. It's a very simple process, but one that seems anything but enjoyable for her. She does not taste the food or feel the texture. We have been going to a feeding clinic for some time now, and just recently has she really started to take to typical food.
Her favorite thing in the world to eat is a banana. When my wife grabs one from the bunch, Zoe hears the sound of it separating from the others and immediately says, or yells "bnnnnaaaannnnnaaaa", and jumps up in the couch. She knows she will be getting some and prepares herself for her bites. When I am in the room, after she takes a bite, she looks at me with the biggest grin and says "nnuuummmy".
I often look back at that little 16 pound baby and remember the pain we went through as we tried to feed her. Like many things in my life, it was a moment I will never forget and often wonder what we did wrong. I know there is nothing we could have done different, but it will always be with me. As parents, we can only do our best and provide as much love as possible. Decisions will come that are hard, and at those times we have to do what our hearts tell us.
Monday, August 16, 2010
Kids are funny
It's the simplest things in life that can bring out a smile or a laugh in someone. For me, just watching my daughter do some ordinary task can bring joy to my heart. At times there are moments when I stop what I am doing and just laugh.
Last night we were sitting in my chair (as we often do), watching one of the Star Wars episodes. Zoe wasn't really into it, but sat there telling me she loved me in her own words. She would say "I wu uu daddy" and other times "Daddy cute". This went on for about 20 minutes with some hugs and a lot of smiles in between.
However, she stopped all she was doing at one point in the movie. Darth Vadar and the Dark Side Emperor were walking down the hallway talking about the Death Star. As most of you know, Darth Vadar has speakers in his head piece and you hear his deep breathing.
All of a sudden, Zoe starting taking very slow, deep breaths in and out as she imitated Darth Vadar. I stopped watching and looked at her out the side of my eye. She was not paying any attention to me, nor was she doing this for attention. She was just having fun imitating someone else. This went on for about 3 or 4 minutes then she caught me watching her. At that moment she started grinning from ear to ear, as she knew I was about to laugh. I couldn't keep my laughter back, and we both joined together for a few minutes in giggles and smiles.
I never want to miss those moments. We often forget to pay attention to times like that, which bring smiles all around.
Last night we were sitting in my chair (as we often do), watching one of the Star Wars episodes. Zoe wasn't really into it, but sat there telling me she loved me in her own words. She would say "I wu uu daddy" and other times "Daddy cute". This went on for about 20 minutes with some hugs and a lot of smiles in between.
However, she stopped all she was doing at one point in the movie. Darth Vadar and the Dark Side Emperor were walking down the hallway talking about the Death Star. As most of you know, Darth Vadar has speakers in his head piece and you hear his deep breathing.
All of a sudden, Zoe starting taking very slow, deep breaths in and out as she imitated Darth Vadar. I stopped watching and looked at her out the side of my eye. She was not paying any attention to me, nor was she doing this for attention. She was just having fun imitating someone else. This went on for about 3 or 4 minutes then she caught me watching her. At that moment she started grinning from ear to ear, as she knew I was about to laugh. I couldn't keep my laughter back, and we both joined together for a few minutes in giggles and smiles.
I never want to miss those moments. We often forget to pay attention to times like that, which bring smiles all around.
Sports and a Dad's Dream
As a father, most of us dream of the days when we will be teaching our children how to play sports. We will show them how to throw or kick a ball, catch a pass, swing a bat, club or racket and how to play by the rules. Our kids will hopefully be taught all the ways to win or lose with grace, and the main teachings of sportsmanship. Yes, being a father has many perks, one of them being able to pass on our knowledge of sports.
But what happens to our dreams as a father when our child is born with a disability? How do we teach a child how to throw a ball when they have no way of even grabbing one. How do we teach them to kick a ball through a goal when they have a hard time just walking on their own? How do we teach them to swing a baseball bat when they can’t grip around the handle? If they have a hard time walking, how do we teach them to run down the field? If you are like me, some of your dreams were crushed when you found out your child had a disability. There would be no chance to pass on the knowledge we have from our youth. At least that is what I thought until 2 years ago.
Yesterday I was able to watch as Zoe put a soccer ball into the goal for the first time in her life. I sat on the sidelines, like I had always dreamed of, cheering her on, with camera in hand. How was this possible? How could a child who has no knowledge of soccer, become a player in less than 1 day. Actually it’s quite easy after you understand what takes place during the game.
2 years ago I was asked by my wife, what I thought about Zoe playing baseball. I thought she was trying to hurt my feelings, as I knew that was impossible. I asked how could our daughter play baseball when she couldn’t run, throw, catch or hit a ball. There was no way she would be able to play. Even after I was told about typically developing children helping them do all those things along side our child, I still said there was no way. But I didn’t even think about the possibilities until that night. While I was in bed trying to go to sleep, I had visions of another child helping Zoe do all those things while they were on the field. I saw a boy helping her swing, like I would if I would be teaching her to hit the ball for the first time. I saw a boy holding her hand and going through the throwing motion as she tossed the ball to another player. Yes, I realized there was a way for a child with a disability to actually play a sport.
The next day I was excited about my thoughts the night before and shared with my wife that I wanted Zoe to play baseball. Turns out they needed a coach that year for Zoe’s team and asked if I would help them out. Here I went from a father who’s dreams were crushed to a father who realized how shallow minded he was. I am no longer narrow minded when it comes to sports, or any activity.
Yesterday, Zoe had the biggest smile on her face as 2 young girls held her hand and directed her down the soccer field. They walked with her, helping her kick the ball and my wife and I sat on the sidelines, our hearts full of joy.
But what happens to our dreams as a father when our child is born with a disability? How do we teach a child how to throw a ball when they have no way of even grabbing one. How do we teach them to kick a ball through a goal when they have a hard time just walking on their own? How do we teach them to swing a baseball bat when they can’t grip around the handle? If they have a hard time walking, how do we teach them to run down the field? If you are like me, some of your dreams were crushed when you found out your child had a disability. There would be no chance to pass on the knowledge we have from our youth. At least that is what I thought until 2 years ago.
Yesterday I was able to watch as Zoe put a soccer ball into the goal for the first time in her life. I sat on the sidelines, like I had always dreamed of, cheering her on, with camera in hand. How was this possible? How could a child who has no knowledge of soccer, become a player in less than 1 day. Actually it’s quite easy after you understand what takes place during the game.
2 years ago I was asked by my wife, what I thought about Zoe playing baseball. I thought she was trying to hurt my feelings, as I knew that was impossible. I asked how could our daughter play baseball when she couldn’t run, throw, catch or hit a ball. There was no way she would be able to play. Even after I was told about typically developing children helping them do all those things along side our child, I still said there was no way. But I didn’t even think about the possibilities until that night. While I was in bed trying to go to sleep, I had visions of another child helping Zoe do all those things while they were on the field. I saw a boy helping her swing, like I would if I would be teaching her to hit the ball for the first time. I saw a boy holding her hand and going through the throwing motion as she tossed the ball to another player. Yes, I realized there was a way for a child with a disability to actually play a sport.
The next day I was excited about my thoughts the night before and shared with my wife that I wanted Zoe to play baseball. Turns out they needed a coach that year for Zoe’s team and asked if I would help them out. Here I went from a father who’s dreams were crushed to a father who realized how shallow minded he was. I am no longer narrow minded when it comes to sports, or any activity.
Yesterday, Zoe had the biggest smile on her face as 2 young girls held her hand and directed her down the soccer field. They walked with her, helping her kick the ball and my wife and I sat on the sidelines, our hearts full of joy.
Friday, August 13, 2010
First Entry
Hopefully this blog will help other dad's who have children with disabilities realize there are others out there, who are just like them. Trying their best to be a dad to their child. No matter what, don't ever give up and make sure you love your child the best you can!
She has cerebral palsy, cortical visual impairment and developmental delays.
Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.
Of the many types and subtypes of CP, none of them have a known cure. Usually, medical intervention is limited to the treatment and prevention of complications arising from CP's effects.
Cortical Visual Iimpairment is also sometimes known as Cortical Blindness, although most people with CVI are not totally blind. The term Neurological Visual Impairment (NVI) covers both CVI and total cortical blindness. Delayed Visual Maturation, another form of NVI, is similar to CVI, except the child's visual difficulties resolve in a few months. Though the vision of a person with CVI may change, it rarely if ever becomes totally normal.
Developmental delay refers to when a child's development lags behind established normal ranges for his or her age.
At the age of 7, Zoe walks and talks, but has a development of a child somewhere around 3. Her vocabulary has some where around 85 words, but she seems to be adding new ones often.
This blog is dedicated to Zoe, my daughter, who has taught me so much about love and life, despite having disabilities. She has disabilities, her disabilities do not have her! She is 7 years old and lives her life to the fullest.
She has cerebral palsy, cortical visual impairment and developmental delays.
Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.
Of the many types and subtypes of CP, none of them have a known cure. Usually, medical intervention is limited to the treatment and prevention of complications arising from CP's effects.
Cortical Visual Iimpairment is also sometimes known as Cortical Blindness, although most people with CVI are not totally blind. The term Neurological Visual Impairment (NVI) covers both CVI and total cortical blindness. Delayed Visual Maturation, another form of NVI, is similar to CVI, except the child's visual difficulties resolve in a few months. Though the vision of a person with CVI may change, it rarely if ever becomes totally normal.
Developmental delay refers to when a child's development lags behind established normal ranges for his or her age.
At the age of 7, Zoe walks and talks, but has a development of a child somewhere around 3. Her vocabulary has some where around 85 words, but she seems to be adding new ones often.
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