This has been a week of firsts for some of us in our family. Trevor has begun sounding out words and recognizing numbers. He has really made a connection between letters and words. He is asking us to tell him what things in the environment say, like "STOP", "Yield", "Joe's Barber Shop", etc. The development of little minds is too cool!
Ella had a first this week, too. She had her first stomach virus! She has never vomited and boy was that an experience for her. Tom and I were up all night grabbing the bucket in anticipation of her illness. She was a good sport, but did get somewhat frustrated with her parents throwing her face in to a bucket every few minutes for fear of what was to come up ( and trying to protect our sheets as she was in our bed!). Needless to say, she only got sick the one time, and the rest of the time was spent tossing and turning either because her tummy hurt, or she did not want be bother by us.
Finally, Aliza has had a week of firsts. She has had absolutely terrible behavior at school and at home. She is refusing to get dressed (not that usual), taking things from others, not listening to her teachers and refusing to follow school rules. For the first time, (another first for our family), I was called by the disciplinarian at school. I was told that Aliza had been to the Disciplinarian two times in one day. The first was because she was rolling around on the floor and would not get up and do her work like the rest of the class. She went to the Disciplinarian, then went back to her class and behaved well. She had lunch with her class and went outside for recess. All was uneventful, until her class got back inside the building to the classroom and Aliza was not with them. She remained on the playground while the rest of the students and staff lined up and went inside. She has gotten reprimanded for this in the past, however they have always been able to get her to line up, eventually. But on this day, no one realized that she was not with the line and she was left outside of the school building. Once she realized that the class had gone inside, she decided it was her time to go inside. The principal saw Aliza walking inside by herself and sent her to the disciplinarian. Who knows how long she had been outside by herself, and there is not a fence or barrier to the playground. She could have easily left the school grounds and gone into the residential neighborhood behind the school, or worse.
Tom and I have never had a problem with our children being "behavior problems". Aliza's behavior is beginning to impact her ability to participate in class. I hope that we are able to nip this in the bud and can come back from Christmas break with a new attitude and better behavior. Aliza is going to start a medication after the holidays, at the advise of her Cardiologist, to allow her heart to pump more efficiently. She is often very tired and her behavior is always worse when she is tired. We hope that we will see some changes in her endurance and ability to handle a full day without getting tired. If it does not work, then it is not a big deal, but at least we will have ruled out a medical reason for her frustrating behavior.
As far as the recess incident goes, we need to work with the school more closely to make sure that this does not happen again. I have a hard time believing my child is solely responsible for her behavior when there are at least 3 other adults on the playground during recess and they are aware that she has had trouble in the past with lining up with the other students.
Friday, December 19, 2008
Friday, December 12, 2008
Trevorisms
Our son Trevor is a pretty cool little guy. He has such a great sense of humor and a really wonderful outlook on the way things are versus the way they should be. Here are some Trevorisms...
- He has always called a plug- a pluggell (not sure why, but when we correct him, we are told that we are wrong so we just gave up and every one calls it a pluggell)
- The other day Trevor and Aliza were sitting on the couch. For some reason she needed to readjust her position. In doing so she climbed over him and accidentally stepped on him. He proclaimed very matter of fact, "Aliza, that's not nice, you just stepped on my tentacles."
- Last Easter were were watching the kids delve into their Easter baskets. They were really enjoying themselves and we were enjoying the peacefulness of the moment. Trevor comes to Tom and I and wraps his arms around our necks from behind. He pulls our heads towards him, and says, "What are you fu**ers doing?" Did we really just hear him say that? We had to ask him again what he had just said. Yes, he said what we heard. Although not at all appropriate, this was very funny.
- One day we were talking about my teeth and how I did not want him to get cavities like I had, and that he needed to brush his teeth well so that he may keep his teeth beautiful. Trevor began to cry and told me that he thought even though I had cavities, I still had beautiful teeth. I was amazed by his insight and sensitivity for my feelings.
Oh, the things people say!
We all have odd things happen to us and I thought that I would try to compile some of the things that have happened to us on our journey raising Aliza.
Before Aliza was born the Neonatologist, who was also a Geneticist, meet with us and wanted to talk about our decision to continue with my pregnancy. She talked to us about the genetic differences in individuals with Down syndrome and then also about the characteristics of people with Down syndrome. She told us of many of the medical complications that are more common in people with Down syndrome and we talked about the cognitive and educational challenges for people with Down syndrome. This doctor told us that on this journey there would be many people who would say some "very stupid things" and we would just have to learn to let them roll off our backs because most people (joe public) were not sensitive to the needs of people with Down syndrome.
As I sat there listening to the doctor I was 22 weeks pregnant with my first child. We were still in shock at the diagnosis and completely unaware of what our future would hold. The doctor however seemed to be able to predict the future for our unborn child. According to the doctor this child would be mentally retarded and would also depend on her parents for her care for the rest of her life. She would likely be able to attend school for kids with special needs, but would need assistance with all aspects of her education. This was going to be a very challenging journey for us as a couple. Eventually, she may learn how to count change, and we may be able to train her where to go to get a bus for her job (because she would never be able to drive) but she would never be able to problem solve. So if her bus did not come, she would not know what to do and would not be able to figure out how to get home or to another bus.
In disbelief at this conversation, both Tom and I looked at each other, convinced that this would not be the outcome for our child. We stood up, and Tom stuck out his hand and said to the omniscient doctor, "Congratulations on being the first person in our lives to say something "very stupid" about our daughter." We left the office and never saw the doctor again. It was at this point that we committed to each other that we were going to be advocates for our child and not allow her to be dismissed. She was a person with the potential to do anything, she was not even born yet! I think as she grows older there is a part of me that is thankful for this doctor. I believe her impression of people with Down syndrome as individuals without the ability to problem solve or to be independent purposeful adults has helped us to encourage these characteristics in Aliza. She is a very strong willed individual who shown us that she can problem solve at the age of 6 and hopefully this ability will grow stronger as she grows older.
At the age of 4 months old we went to the hospital to have blood work completed for Aliza. She was sitting on my lap in the big chair. When the lab tech came to draw Aliza's blood she looked at her, then at me and said, "Where'd you get her from?" in a somewhat southern accent. I was very confused and looked at Tom, then looked back at the tech and said, "What do you mean?" She then said, "Like where did you adopt her from, China, Russia, where is she from?" I know my eyes were as big as they could be and my jaw needed to be picked up off the ground, but I said to this very experienced lab tech, "I birthed her!" The technician realized her mistake immediately, and it was one of those open mouth, insert foot moments. She just said, "Oh." She knew that she could not justify her mistake and it was better left alone. The remaining appointment was in silence, but it was better that way because Tom and I could hardly contain ourselves. We laughed for days about the incident and "Where'd you get her from" has become one of those things just between us that always puts a smile on our face.
When Aliza was very young we found it difficult to go into public places because she seemed to get so much attention from others. We wondered if all children get this much attention, or was it just our child. Was it because she had Down syndrome, or did she have a way of drawing people in? We don't know, but I do know that our other two children never received the attention that Aliza received as an infant.
For example when Aliza was little I could not go to the grocery store or Target without at least one complete stranger coming up to her and giving her a kiss or hug and calling her an "Angel", commenting on how loving and pleasant people with Down syndrome are and how blessed we are to have her. For some reason children with Down syndrome are perceived as "Angels" and thought to be always happy. Whatever other peoples beliefs about "Angels" may be, I can say for sure that Aliza is not always my vision of an "Angel". I would like to invite these people in to my home to see how the "Angel" screams when having her hair brushed, or when she was younger would scratch or bite her siblings because she did not have the words to communicate with them. Aliza was a wonderful baby and toddler and is a great 6 year old girl. But "Angel" she is not (at least not all the time).
She is and always has been a determined little girl who has had tantrums and fits, dislikes brushing her teeth, enjoys picking on her brother and being pesky. There are people that her intuition tells her not to trust and she does not feel comfortable giving hugs and kisses to strangers. (Can you believe that some complete strangers will actually ask her for a hug or kiss!) She is not different than any other 6 year old girl. We work to teach her boundaries and hope that others respect that she has boundaries just like anyone else.So the next time you see a person with Down syndrome, please respect their space and their right to misbehave and simply be a child (or adult) as you would any other person. And by the way, we are blessed to have Aliza in our lives, not because she has Down syndrome, but because she is our daughter.
Tuesday, December 9, 2008
The other member of our family
I have had pets my entire life. We always had lots of cats and always a dog, but never more than one at a time. When Tom and I met, I had a dog and two cats. He was not a pet person! He told me the first time that we met that he was allergic to cats. The constant disbeliever that I am, I decided to challenge him to this statement that he was allergic and grabbed the cat and rubbed him across his face while he was sitting on the sofa. I was convinced that enough exposure to a cat would get rid of the allergy and if he was not willing to have pets, then this was not the guy for me. Quite a bold move on a first date!
So for 8 years Tom has been living in a home with pets, both a cat and a dog. He is still allergic, my theory did not hold true, but he does not have any problems as long as he does not touch the cat.
A few months ago we decided to get a new dog. Our other dog had passed away a year before and the kids were really missing having a dog. (The cat too since the cat was getting all of the kids attention, which was a little bit too much... no, Gizyo can't go on the swing with you, in the car with you, in the bath with you, he does not want to play dress up and you can't strap him in to the stroller!) Trevor would often cry at night for a dog. He would go to bed crying that he was the only one in the house that did not have a Buddy. The girls had each other in their room, mommy and daddy had each other for Buddies, but he had no one. He wanted a dog for his Buddy.
We went to the shelter to get our dog. We spent a few weeks going to different shelters and talking to the kids about adoption of animals. The day we went to get our dog we knew immediately that Chase would be our dog. He was a 6 month old Boxer who was scared of life. We needed a dog that had energy for our busy family and was strong enough to handle the attention of our three kids. He was incredibly undernourished and very unhealthy. For the first two weeks he did not get off of his bed. He slept and had diarrhea and would not eat. Eventually, he started gaining weight and became more active. We needed to begin to train him and house train him. We decided that we would crate train him during the day since we need a place to have him safe while we were not home. After all he was still a puppy.
One night Chase got up in the middle of the night. Tom went downstairs to let him out. When he got downstairs I heard him yell at the dog. I went down the steps and he said, "Please turn a light on, I think I stepped in dog pee." So I turned the light on and at the same time noticed the worst smell ever. We looked around and saw diarrhea all over the first floor of our house. It was not pee, but poop! It was everywhere. We both started cleaning it up (thankfully we have all hardwood floors on the first floor) and then the kids started one by one coming down the steps. They sat on the steps at 2:30 in the morning, gagging at the smell and sight in front of them. At this point I began to wonder why we thought we could handle another living creature in our home. This illness went on for days and the dog lost more weight and the finally, the end came. The dog was sitting in the front passenger seat of my car and I had just picked Aliza up from school. We were not yet out of the driveway to the school and I heard the dog starting to gag. As I am driving, the dog starts vomiting. I have never in my life seen so much vomit. He has not eaten in two days, I think, what on earth is going on. He throws up in my lap, on the floor, in the seat, all over the front of the car and the kids are speechless. I pull over and get out of the car. I am so glad that I still have a child wearing diapers and carry baby wipes wherever I go. I begin to clean out my car. I look at the vomit and realize that it is one big, giant ball of thread. I start pulling it apart and recognize the print of the fabric... it is from the comforter that is in the dogs crate. I eventually get the car clean and head home. Once home, I go to the crate and realize that what was once a Queen sized comforter, is now shreds of fabric barely larger than a bath towel. The dog had eaten an entire comforter. This explains the past two days of diarrhea and lack of appetite and I pray that it has all come out because I can not afford any more medical bills.
A few weeks pass and all is well with Chase. He seems to be recovering and is even putting weight back on. One night, Tom lets him out before bed. He looks outside at the dog and sees the dog having a hard time going to the bathroom. The dog sees Tom and decides to bolt into the house as if something is chasing him. Tom stops him at the door and realizes that he has something hanging out of his butt. Tom sends the dog back into the yard and tells him he has got to work this one out on his own. (I can hear the conversation from upstairs and wonder who could he be talking to?) I get up and look out the window. I see Chase squatting, and Tom telling him, "come on buddy, you can do it, push it out...) Chase is struggling between squatting and running around in circles, chasing what ever it is that is following him and attached to his butt. Eventually, Tom determines that the dog is not going to be able to do this on his own and needs some assistance. My husband, the one who does not like pets (that's what he says to be tough anyway) dons a trash bag over his hand and decides to take matters into his own hands. He grabs for the mysterious object hanging from the dogs bottom. He gives a tug,.. nothing happens. He tugs again, the object gets longer, and longer and longer. The dog is looking at Tom, completely grateful for his assistance and obviously feeling much more comfortable. After pulling approximately three feet of something out of the butt of our dog, Tom and the dog call it a night and come inside both with their heads hanging low. One completely disgusted and the other forever grateful for his human companion. We are so happy to have Chase with us. He is healthy (as long as we keep him away from comforters) and provides companionship for Trevor (although Trevor won't allow him to sleep in his bed) and cuddles with Aliza. He thinks the cat is his toy and adds more stress to the cat's life, but at the end of the day, he is a good dog and we all love him. And I love my husband for stepping outside of his comfort zone and allowing our family to have pets.
So for 8 years Tom has been living in a home with pets, both a cat and a dog. He is still allergic, my theory did not hold true, but he does not have any problems as long as he does not touch the cat.
A few months ago we decided to get a new dog. Our other dog had passed away a year before and the kids were really missing having a dog. (The cat too since the cat was getting all of the kids attention, which was a little bit too much... no, Gizyo can't go on the swing with you, in the car with you, in the bath with you, he does not want to play dress up and you can't strap him in to the stroller!) Trevor would often cry at night for a dog. He would go to bed crying that he was the only one in the house that did not have a Buddy. The girls had each other in their room, mommy and daddy had each other for Buddies, but he had no one. He wanted a dog for his Buddy.
We went to the shelter to get our dog. We spent a few weeks going to different shelters and talking to the kids about adoption of animals. The day we went to get our dog we knew immediately that Chase would be our dog. He was a 6 month old Boxer who was scared of life. We needed a dog that had energy for our busy family and was strong enough to handle the attention of our three kids. He was incredibly undernourished and very unhealthy. For the first two weeks he did not get off of his bed. He slept and had diarrhea and would not eat. Eventually, he started gaining weight and became more active. We needed to begin to train him and house train him. We decided that we would crate train him during the day since we need a place to have him safe while we were not home. After all he was still a puppy.
One night Chase got up in the middle of the night. Tom went downstairs to let him out. When he got downstairs I heard him yell at the dog. I went down the steps and he said, "Please turn a light on, I think I stepped in dog pee." So I turned the light on and at the same time noticed the worst smell ever. We looked around and saw diarrhea all over the first floor of our house. It was not pee, but poop! It was everywhere. We both started cleaning it up (thankfully we have all hardwood floors on the first floor) and then the kids started one by one coming down the steps. They sat on the steps at 2:30 in the morning, gagging at the smell and sight in front of them. At this point I began to wonder why we thought we could handle another living creature in our home. This illness went on for days and the dog lost more weight and the finally, the end came. The dog was sitting in the front passenger seat of my car and I had just picked Aliza up from school. We were not yet out of the driveway to the school and I heard the dog starting to gag. As I am driving, the dog starts vomiting. I have never in my life seen so much vomit. He has not eaten in two days, I think, what on earth is going on. He throws up in my lap, on the floor, in the seat, all over the front of the car and the kids are speechless. I pull over and get out of the car. I am so glad that I still have a child wearing diapers and carry baby wipes wherever I go. I begin to clean out my car. I look at the vomit and realize that it is one big, giant ball of thread. I start pulling it apart and recognize the print of the fabric... it is from the comforter that is in the dogs crate. I eventually get the car clean and head home. Once home, I go to the crate and realize that what was once a Queen sized comforter, is now shreds of fabric barely larger than a bath towel. The dog had eaten an entire comforter. This explains the past two days of diarrhea and lack of appetite and I pray that it has all come out because I can not afford any more medical bills.
A few weeks pass and all is well with Chase. He seems to be recovering and is even putting weight back on. One night, Tom lets him out before bed. He looks outside at the dog and sees the dog having a hard time going to the bathroom. The dog sees Tom and decides to bolt into the house as if something is chasing him. Tom stops him at the door and realizes that he has something hanging out of his butt. Tom sends the dog back into the yard and tells him he has got to work this one out on his own. (I can hear the conversation from upstairs and wonder who could he be talking to?) I get up and look out the window. I see Chase squatting, and Tom telling him, "come on buddy, you can do it, push it out...) Chase is struggling between squatting and running around in circles, chasing what ever it is that is following him and attached to his butt. Eventually, Tom determines that the dog is not going to be able to do this on his own and needs some assistance. My husband, the one who does not like pets (that's what he says to be tough anyway) dons a trash bag over his hand and decides to take matters into his own hands. He grabs for the mysterious object hanging from the dogs bottom. He gives a tug,.. nothing happens. He tugs again, the object gets longer, and longer and longer. The dog is looking at Tom, completely grateful for his assistance and obviously feeling much more comfortable. After pulling approximately three feet of something out of the butt of our dog, Tom and the dog call it a night and come inside both with their heads hanging low. One completely disgusted and the other forever grateful for his human companion. We are so happy to have Chase with us. He is healthy (as long as we keep him away from comforters) and provides companionship for Trevor (although Trevor won't allow him to sleep in his bed) and cuddles with Aliza. He thinks the cat is his toy and adds more stress to the cat's life, but at the end of the day, he is a good dog and we all love him. And I love my husband for stepping outside of his comfort zone and allowing our family to have pets.
Sunday, December 7, 2008
That's Bill
Over the weekend we went to a Christmas Party with the kids. On our way to the party we informed the kids that Santa was going to be at the party. Tom and I knew in advance that we would have to get our stories straight about Santa and his helpers. Trevor did not understand how this could happen since Santa needed to be in the North Pole making his Christmas presents. (He has a very long wish list) We told the kids that Santa has helpers that he sends all around the world to help him and one of Santas helpers would be at the party.
Trevor is an incredibly sensitive and intuitive boy. We have lovingly nicknamed him "Hounddog" because his sense of smell is so incredible. There's no sneaking a piece of chocolate when Trevor is home, he will know, no matter where he is he can smell it. One time I had a piece of chocolate, then went out to the car to take the kids to a class. Trevor immediately said,"Mom, where did you get that chocolate?" It had been at least 10 minute since I had indulged in my simple pleasure, and it was not something that I was interested in sharing. I can't lie to my children, but at the same time, I was no longer eating the chocolate. Initially I told him that I was not eating chocolate...but finally, I had to confess that I had a piece while at home as he would not give up, afterall he is a "Hounddog".
So the kids had a great time at the party. They played games with friends and Ella enjoyed the snack table (how she loves her chocolate, too!) The party was at the Mary Campbell Center, a residential facitily for people with disabilities. We participate in many of the events at the Center because they have an amazing program for kids with disabilities and their families. The counselors at the Center are college students who have great relationships with the kids. Toward the end of the party, Santa arrives. He looks like no other Santa I have seen. He is skinny, his beard is falling off and competely covering his mouth and his jacket is on backwards. (the white fur lining is going down the center of his back) Needless to say, the kids are thrilled to see Santa. Aliza goes running from across the room and tackles him, yelling "It's Santa, It's Santa!" So all is going well, Santa sits down and starts handing out gifts. The kids sit on the floor surrounding Santa. (All except for Ella who needs to have clear path to the refreshments) Aliza is right up front and center and Trevor is somewhat septical and sits with Tom toward the back of the group.
So aside for the backwards clothing, the problems with the beard and the lack of Santaesque voice, Santa seems to be pulling this gig off and we have three very happy children. However, Trevor is very quiet and focused. He is sitting on Tom's lap, seemingly waiting patiently for Santa to call his name. (He is one of the last children called.) When out of the mouths of babes, "Hounddog" turns around to Tom and says, "Dad, that's Bill" There was no mistaking it, there was no justifying, there was no covering up. The fact of the matter was, Santa was Bill. We never had to explain, there were no other questions about Santas helpers and the issue has yet to be addressed in our home. We stressed about making sure we were on the same page when in the end "Hounddog" summed it all up for us, "That's Bill"
Trevor is an incredibly sensitive and intuitive boy. We have lovingly nicknamed him "Hounddog" because his sense of smell is so incredible. There's no sneaking a piece of chocolate when Trevor is home, he will know, no matter where he is he can smell it. One time I had a piece of chocolate, then went out to the car to take the kids to a class. Trevor immediately said,"Mom, where did you get that chocolate?" It had been at least 10 minute since I had indulged in my simple pleasure, and it was not something that I was interested in sharing. I can't lie to my children, but at the same time, I was no longer eating the chocolate. Initially I told him that I was not eating chocolate...but finally, I had to confess that I had a piece while at home as he would not give up, afterall he is a "Hounddog".
So the kids had a great time at the party. They played games with friends and Ella enjoyed the snack table (how she loves her chocolate, too!) The party was at the Mary Campbell Center, a residential facitily for people with disabilities. We participate in many of the events at the Center because they have an amazing program for kids with disabilities and their families. The counselors at the Center are college students who have great relationships with the kids. Toward the end of the party, Santa arrives. He looks like no other Santa I have seen. He is skinny, his beard is falling off and competely covering his mouth and his jacket is on backwards. (the white fur lining is going down the center of his back) Needless to say, the kids are thrilled to see Santa. Aliza goes running from across the room and tackles him, yelling "It's Santa, It's Santa!" So all is going well, Santa sits down and starts handing out gifts. The kids sit on the floor surrounding Santa. (All except for Ella who needs to have clear path to the refreshments) Aliza is right up front and center and Trevor is somewhat septical and sits with Tom toward the back of the group.
So aside for the backwards clothing, the problems with the beard and the lack of Santaesque voice, Santa seems to be pulling this gig off and we have three very happy children. However, Trevor is very quiet and focused. He is sitting on Tom's lap, seemingly waiting patiently for Santa to call his name. (He is one of the last children called.) When out of the mouths of babes, "Hounddog" turns around to Tom and says, "Dad, that's Bill" There was no mistaking it, there was no justifying, there was no covering up. The fact of the matter was, Santa was Bill. We never had to explain, there were no other questions about Santas helpers and the issue has yet to be addressed in our home. We stressed about making sure we were on the same page when in the end "Hounddog" summed it all up for us, "That's Bill"
Encouraging Independence
I am a sleeper... I love to sleep. I cherish every moment of sleep and of course as life goes, I have three children who do not know what sleep is... such a cruel joke. My husband and I take turns on the weekends and he gets up with the kids one day and I the other. Sleeping-in at our home means until 7:30 or 8:00am on weekends since the kids wake up between 6-7am everyday and sometimes even as early at 5am. A few weeks ago we heard the kids get up and instead of coming in to our room, Aliza decided she was going to go downstairs and help herself to a bowl of cereal. We looked at each other and decided that we were going to just let her go and see what she could do.
Together Aliza, Trevor and Ella worked cooperatively to make their breakfast. They moved stools to get bowls and cereal down and helped each other pour the gallon of milk. We could hear them talking to each other (instead of yelling at each other) about their next steps and asking each other for help. When all was said and done, breakfast was made and they were so proud of themselves. They even made breakfast for Mommy and Daddy.
So sleeping in was not in the cards for either of us as we were summoned to come eat. They had done a great job. There was some spilled milk and a few cheerios on the floor. The decision was made to put water in Ella's cereal instead of milk because they had used all the milk and Ella eats anything. She won't eat what is put in front of her, but will eat whatever anyone else has and often goes around the table after everyone is finished and eats the leftovers. (not sure why, but she doesn't have issue with it and neither do they)
So for a few weekends now, the kids have been getting up and making their cereal and really seem to gain a sense of control and pride in their accomplishments. The bigger picture for us is that our kids are learning skills like cooperation, problem solving, and independence. While pregnant with Aliza we were told by the Neonatologist what Aliza's limitations would be... she would not be able to problem solve, she would not live independently, and many other things that should would not be able to do... Well Dr. M, I would like to introduce you to my daughter, the very strong, independent problem solver who is determined to meet challenges put in front of her. I know that it is just a bowl of Cheerios, but you have to start somewhere!
Together Aliza, Trevor and Ella worked cooperatively to make their breakfast. They moved stools to get bowls and cereal down and helped each other pour the gallon of milk. We could hear them talking to each other (instead of yelling at each other) about their next steps and asking each other for help. When all was said and done, breakfast was made and they were so proud of themselves. They even made breakfast for Mommy and Daddy.
So sleeping in was not in the cards for either of us as we were summoned to come eat. They had done a great job. There was some spilled milk and a few cheerios on the floor. The decision was made to put water in Ella's cereal instead of milk because they had used all the milk and Ella eats anything. She won't eat what is put in front of her, but will eat whatever anyone else has and often goes around the table after everyone is finished and eats the leftovers. (not sure why, but she doesn't have issue with it and neither do they)
So for a few weekends now, the kids have been getting up and making their cereal and really seem to gain a sense of control and pride in their accomplishments. The bigger picture for us is that our kids are learning skills like cooperation, problem solving, and independence. While pregnant with Aliza we were told by the Neonatologist what Aliza's limitations would be... she would not be able to problem solve, she would not live independently, and many other things that should would not be able to do... Well Dr. M, I would like to introduce you to my daughter, the very strong, independent problem solver who is determined to meet challenges put in front of her. I know that it is just a bowl of Cheerios, but you have to start somewhere!
Thursday, December 4, 2008
Medical Procedures
So we have been through our fair share of medical procedures with our children. We are pretty experienced at the entire process and usually very thorough with our questions of the surgeons and doctors before we make the decision to move forward with surgery.
Aliza had open heart surgery at three weeks of age, then had tubes 2 times and a procedure to open her tear ducts. She had tonsils and adenoids removed when she was 5 and all procedures have gone well and the recovery has been fine. Trevor had minor procedures like tubes and a sigmoidoscomy when he was one, then he became sick when he was 22 months old and went through bone marrow aspirations, spinal taps, multiple sedated MRI's and daily blood tests. We feel like pros, unfortunately.
So when Aliza's eye doctor tells us that she needs to have a minor procedure to place a tube in her eyes so that they can open up her tear ducts (the previous procedure was not successful) we trust that things will go well and there will not be any side effects. We ask all of the right questions, we are aware that the tubes will be able to be seen and will stay for approximately three months. Everything goes well with the procedure. We have an excellent anesthesiologist and we have made the entire team aware of Alizas previous complications with anesthesia. The procedure is over and we go to the post op meeting room to talk to the doctors. He says all is fine. He continues to tell us that there are a few things that we need to be aware of....
*There will be some bleeding from her nose and eyes as there are stitches in her nose that will dissolve in a few weeks.
*If at any time we see a tube coming out of Alizas eyes about 2-3 inches, don't panic.... this is where my jaw dropped and I realized I did not know what we had gotten ourselves into. The doctor continues and says it is not an emergency, just tape the tube to the bridge of her nose and call him.
Obviously this doctor has not spent enough time with our daughter and does not know that she has quite a bit of sensory defensiveness and would never tolerate a tube hanging out of her eye, let alone tape on her nose. Immediately I began to think about Alizas teachers and school nurse. I could only imagine the fear and shock on the teachers and other students faces when while sitting at circle time they realized that there was a 3" tube hanging out of our daughters eye. To tell a teacher and school nurse not to panic is a total oxymoron. Aliza has been sent to the school nurse for sneezing in class.
At this point both my husband and I looked at each other and began to laugh. This is when we realized that we did not ask all the right questions. We were so consumed with the surgery itself that we never thought about post surgery. We asked the doctor to write a letter to the school, because we knew this would be required and give them the instructions about what to do when the tubes came out because I was certain that it would occur at school.
So after the talk, we take Aliza home and make sure that she does not touch her eyes and constantly make sure that the tubes are where they are supposed to be. All goes well and Aliza even goes back to school three days later, the last day before Thanksgiving break. The teacher says she was nervous, but no one panics and Aliza stays in school all day.
For Thanksgiving my in-laws came to visit. The day before Thanksgiving I had planned to go to Toys R Us for the perfect gift for Aliza that I was certain would be sold out before Christmas. I had one hour before Aliza's friend from school came over for a play date. I did not want to have my mother in law responsible for someone else's child too, so I promised to be home before the friend came. About 5 minutes into my shopping trip, about 2o minutes since I had left the house, my phone rings. It is my mother in law. I immediately know why she is calling. She would never interrupt my free time as she knows how important it is. She calmly tells me that Aliza has a tube hanging out of her eye.... what should she do? Now I had prepared my mother in law for this situation, but never believed that it would happen. I told her where the tape was, and to tape the tube and I would be right home. On my way home I called to the doctors office and was told to come in immediately. I realized that there was something else that I had forgotten to ask... what happens if she pulls on the tube???? (Apparently she could rip her tear duct completely if she pulled too hard, but likely would not pull as it would be painful)
When I got home I was shocked at the sight of my daughter. I had not prepared myself for the how strange Aliza would look with a tube hanging out of her eye. She also had a bloody nose since the tube was stitched inside her nose and the stitch had riped, which is why it was out of her eye. I packed her into the car and she was a trooper. She didn't complain, just cooperated and understood that something was not right with her eye.
When I pulled up to the hospital, I parked outside of the emergency room in the emergency parking. I felt I was justified as my daughter had a tube hanging out of her eye and a bloody nose. She actually looked quite scary if you didn't know why these things were there. As I am leaving my car, the parking attentant tells me that my space is for emergencies only. I told him that I did have an emergency. (He had not seen Aliza at this point.) He continued to inform me that my car would be towed, but he could easily Valet my car. I was quite irritated at this point because this guy was insisting on me not being parked in this space. Finally I gave him the keys to my car, but also told him the dog in the front seat is usually friendly (our Boxer named Chase). At this time he stopped and said "you have a dog in the car?" I said yes, and Aliza turned around and looked at him, he looked at her and almost passed out and then told me to go inside, he would make sure my car was not towed.
In the doctors office they removed the tubes, it was a fairly simple procedure, but very traumatic for Aliza. She was so scared and we had to hold her down while he cut them out of her eyes. I know that she was grateful to have them removed because the entire time they were in she seemed bothered by them. I am not sure what our next step will be with the whole blocked tear ducts thing. We can have the tubes replaced, with a sponge on the end so that they can not come out without a surgery to remove them. One thing I know for certain is that we will be sure to ask questions about post surgery limitations and expectations before we venture into this again.
Aliza had open heart surgery at three weeks of age, then had tubes 2 times and a procedure to open her tear ducts. She had tonsils and adenoids removed when she was 5 and all procedures have gone well and the recovery has been fine. Trevor had minor procedures like tubes and a sigmoidoscomy when he was one, then he became sick when he was 22 months old and went through bone marrow aspirations, spinal taps, multiple sedated MRI's and daily blood tests. We feel like pros, unfortunately.
So when Aliza's eye doctor tells us that she needs to have a minor procedure to place a tube in her eyes so that they can open up her tear ducts (the previous procedure was not successful) we trust that things will go well and there will not be any side effects. We ask all of the right questions, we are aware that the tubes will be able to be seen and will stay for approximately three months. Everything goes well with the procedure. We have an excellent anesthesiologist and we have made the entire team aware of Alizas previous complications with anesthesia. The procedure is over and we go to the post op meeting room to talk to the doctors. He says all is fine. He continues to tell us that there are a few things that we need to be aware of....
*There will be some bleeding from her nose and eyes as there are stitches in her nose that will dissolve in a few weeks.
*If at any time we see a tube coming out of Alizas eyes about 2-3 inches, don't panic.... this is where my jaw dropped and I realized I did not know what we had gotten ourselves into. The doctor continues and says it is not an emergency, just tape the tube to the bridge of her nose and call him.
Obviously this doctor has not spent enough time with our daughter and does not know that she has quite a bit of sensory defensiveness and would never tolerate a tube hanging out of her eye, let alone tape on her nose. Immediately I began to think about Alizas teachers and school nurse. I could only imagine the fear and shock on the teachers and other students faces when while sitting at circle time they realized that there was a 3" tube hanging out of our daughters eye. To tell a teacher and school nurse not to panic is a total oxymoron. Aliza has been sent to the school nurse for sneezing in class.
At this point both my husband and I looked at each other and began to laugh. This is when we realized that we did not ask all the right questions. We were so consumed with the surgery itself that we never thought about post surgery. We asked the doctor to write a letter to the school, because we knew this would be required and give them the instructions about what to do when the tubes came out because I was certain that it would occur at school.
So after the talk, we take Aliza home and make sure that she does not touch her eyes and constantly make sure that the tubes are where they are supposed to be. All goes well and Aliza even goes back to school three days later, the last day before Thanksgiving break. The teacher says she was nervous, but no one panics and Aliza stays in school all day.
For Thanksgiving my in-laws came to visit. The day before Thanksgiving I had planned to go to Toys R Us for the perfect gift for Aliza that I was certain would be sold out before Christmas. I had one hour before Aliza's friend from school came over for a play date. I did not want to have my mother in law responsible for someone else's child too, so I promised to be home before the friend came. About 5 minutes into my shopping trip, about 2o minutes since I had left the house, my phone rings. It is my mother in law. I immediately know why she is calling. She would never interrupt my free time as she knows how important it is. She calmly tells me that Aliza has a tube hanging out of her eye.... what should she do? Now I had prepared my mother in law for this situation, but never believed that it would happen. I told her where the tape was, and to tape the tube and I would be right home. On my way home I called to the doctors office and was told to come in immediately. I realized that there was something else that I had forgotten to ask... what happens if she pulls on the tube???? (Apparently she could rip her tear duct completely if she pulled too hard, but likely would not pull as it would be painful)
When I got home I was shocked at the sight of my daughter. I had not prepared myself for the how strange Aliza would look with a tube hanging out of her eye. She also had a bloody nose since the tube was stitched inside her nose and the stitch had riped, which is why it was out of her eye. I packed her into the car and she was a trooper. She didn't complain, just cooperated and understood that something was not right with her eye.
When I pulled up to the hospital, I parked outside of the emergency room in the emergency parking. I felt I was justified as my daughter had a tube hanging out of her eye and a bloody nose. She actually looked quite scary if you didn't know why these things were there. As I am leaving my car, the parking attentant tells me that my space is for emergencies only. I told him that I did have an emergency. (He had not seen Aliza at this point.) He continued to inform me that my car would be towed, but he could easily Valet my car. I was quite irritated at this point because this guy was insisting on me not being parked in this space. Finally I gave him the keys to my car, but also told him the dog in the front seat is usually friendly (our Boxer named Chase). At this time he stopped and said "you have a dog in the car?" I said yes, and Aliza turned around and looked at him, he looked at her and almost passed out and then told me to go inside, he would make sure my car was not towed.
In the doctors office they removed the tubes, it was a fairly simple procedure, but very traumatic for Aliza. She was so scared and we had to hold her down while he cut them out of her eyes. I know that she was grateful to have them removed because the entire time they were in she seemed bothered by them. I am not sure what our next step will be with the whole blocked tear ducts thing. We can have the tubes replaced, with a sponge on the end so that they can not come out without a surgery to remove them. One thing I know for certain is that we will be sure to ask questions about post surgery limitations and expectations before we venture into this again.
Wednesday, December 3, 2008
This evening I was asked a question by my husband... He said, " Think back five years ago, when our only child was Aliza. What did you think your life would be like in five years?"
After giving that some thought, I have to say that I never would have put myself in the place that we are in today. I always wanted to have a lot of children, but I did not know if that was possible. I did not know if I could have "typical" children (by the way, I was still learning the "PC" language).
At our first meeting with Dr. Bartoshesky (Pediatric Geneticist) we asked him to tell us what we could do to give Aliza the greatest chance at success and he said, "Have more children, and lots of them." We were so concerned about her heart and other health issues and focused on starting therapies that we forgot to think about our goals as a famliy. We were greatful for the humbleness of Dr. B. He reminded us that Alizas achievements will come and we will naturally encourage those achievements without intending to, and siblings will also encourage Aliza to achieve higher and will enrich her through their achievements and growth.
I know that in all cases this is not always possible, but for our family, Aliza's siblings have helped her to become the talkative, funny and social person that she is today. They too have benefited from Aliza's experiences. When I think back five years ago, I never could have imagined how beneficial Aliza's siblings would have been to her development. I also could not have imagined how much she would be capable of achieving. She is speaking multiple word sentences with clarity, she knows her letters and numbers, her colors and shapes. She can write her name and read a few words. She is fully included in a first grade classroom and has friends who want to come over for playdates and call her to talk on the phone. I now am excited for her future accomplishments.
So the answer to my husbands question was" No, I could not have imagined this five years ago. The reality of today is so much better than what I had envisioned it to be." I remember crying to him days after Aliza was born, feeling overwhelmed and not wanting the cards that I was dealt. Now, I pray that nothing takes those cards away!
After giving that some thought, I have to say that I never would have put myself in the place that we are in today. I always wanted to have a lot of children, but I did not know if that was possible. I did not know if I could have "typical" children (by the way, I was still learning the "PC" language).
At our first meeting with Dr. Bartoshesky (Pediatric Geneticist) we asked him to tell us what we could do to give Aliza the greatest chance at success and he said, "Have more children, and lots of them." We were so concerned about her heart and other health issues and focused on starting therapies that we forgot to think about our goals as a famliy. We were greatful for the humbleness of Dr. B. He reminded us that Alizas achievements will come and we will naturally encourage those achievements without intending to, and siblings will also encourage Aliza to achieve higher and will enrich her through their achievements and growth.
I know that in all cases this is not always possible, but for our family, Aliza's siblings have helped her to become the talkative, funny and social person that she is today. They too have benefited from Aliza's experiences. When I think back five years ago, I never could have imagined how beneficial Aliza's siblings would have been to her development. I also could not have imagined how much she would be capable of achieving. She is speaking multiple word sentences with clarity, she knows her letters and numbers, her colors and shapes. She can write her name and read a few words. She is fully included in a first grade classroom and has friends who want to come over for playdates and call her to talk on the phone. I now am excited for her future accomplishments.
So the answer to my husbands question was" No, I could not have imagined this five years ago. The reality of today is so much better than what I had envisioned it to be." I remember crying to him days after Aliza was born, feeling overwhelmed and not wanting the cards that I was dealt. Now, I pray that nothing takes those cards away!
A brief summary
I am a stay at home mom (and part time real estate agent) of three children, ages 6 1/2, 4, and 2 years. My husband is a public school teacher. Our oldest child, Aliza Grace was born in 2002 with Down syndrome. She is the most amazing, beautiful, loving child anyone could ever dream of having. We have had our challenges with Aliza, including open heart surgery at 3 weeks of age, battles with Pneumonia, ear infections, bowel problems, etc. At the same time we have all worked incredibly hard to help Aliza make gains and achieve as her typical peers do. She is fully included in a regular education First Grade classroom, she takes dance class, swimming lessons (she is swimming independently at 6 years old! WOW!) and rides horses. Every challenge we have put in front of Aliza, she has taken on and has succeeded. We are so proud to be her parents and to watch her grow and achieve things that many have said kids with disabilities could not. In addition to having our first child being born with a disability, when our second child, Trevor was 22 months old, he was diagnosed with a brain tumor. The relationship between Aliza and Trevor is amazing. Her development has truly been enhanced because of him. Now that he is sick, we have learned a lot about Sibling Cord Blood Donation. It is like fate stepped in and showed us what we need to do for our son. We learned of a company that would allow us to donate our unborn child’s cord blood, completely free of charge, so that in the event Trevor would need a stem cell transplant, it will be available for him. Although we planned this pregnancy, it could not have come at a better time for Trevor. Financially we would not have been able to afford to have the cord blood saved if the company did not come forward with their generous gift, which could turn out to be the gift of life for our son. In November 2006, our third child Ella was born. At this point we do not know if we will ever need to use Ella's cord blood, we pray that we will not. In this journey we have learned many things, most importantly; everyone has something to offer... Aliza has taught us that perfection is in the eye of the beholder; Trevor’s diagnosis has taught us that life is not guaranteed even when your child is “typical”, and Ella may one day give the gift of life to her brother through her cord blood. We have amazing children. We strive to be strong advocates for our children and have had so many medical and educational challenges that we never planned for on the day we said our vows to each other. Our marriage and relationship has grown stronger as a result of these challenges. You never know your own strength until it is tested; our strength as individuals and a couple has been tested more than many others. We have remained strong and committed.
My First Blog
For years I have been told by friends and family that I need to start writing down the stories of our journey with our three wonderful children. It seems that everyday something unexpected happens in this journey, something wonderful or strange, and sometimes frightening. So now, almost seven years into this journey of parenthood I am going to reflect on our time.
Subscribe to:
Posts (Atom)