With Down syndrome, there is a wide variance in how well the children communicate. I am no expert, but I've heard people with Down syndrome be able to barely get out a word or two to communicate a thought to the Glee star Lauren Potter who has Down syndrome. She stars in the show, and I've heard her do interview. It is a huge concern of mine that our daughter be able to communicate.
We have been very blessed that G doesn't have major motor development delays, but she is behind on beginning speech. She is not making baby babble or some of the vowel sounds that babies her age should be so I called the speech therapist I work with through the school system. She is an amazing lady and does great work with the little kiddos in our district. She had us come in so she could watch G and give me some pointers.
I've sat through oodles of IEP (individualized educations plan) meeting listening to how to help other children, but it's scary when it's your own child who's behind. We were all sitting on the floor of speech therapist's office playing, getting pointers for helping develop G's speech when I suddenly burst into waterworks. Most of the time I accept the fact that our daughter has Ds just fine, but sometimes it sneaks up on me. I can start up some tears like you've never seen, and once I get started, it's pretty hard to get the leaky faucet stopped. I'm sure the speech team was ready to have me evaluated....
Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts
Thursday, August 4, 2011
Thursday, July 21, 2011
New Activity
As a teacher, I know how important learning activities are for kids, and as a mother of a child with Down syndrome, I want to provide as many learning opportunities as I can so I've been working on an activity for my daughter that helps her explore her world through tactile experiences.
G LOVES feeling things; she rolls across the floor to scratch the linoleum, finger strings endlessly, and pets Daddy's chin stubble. The other day while feeding her, a big blob of oatmeal/mixed vegetable goo fell on her tray, and she had more fun playing in it. I decided that I need to make sure I gave her plenty of "feeling" experiences since she seems to be a tactile learner. I let her play in her food (yes, I know it was a bit of a waste of food, but it was only a spoonful) and talked to her about how it felt. Then I wiped her hands off and gave her some dry baby oatmeal and let her play with that and talked to her about the differences (if you try this, make sure you are supervising so your child doesn't put a handful of dry oatmeal in his/her mouth). I know she can't understand what I'm telling her yet, but it is a start in her being able to compare and contrast and tell similarities and differences which are skills tested all throughout the school years. Besides, talking to your child is very beneficial to brain, social, and communication development.
I am also working on a bag of "feelies" for her to continue her exploration. I am putting in velcro strips (both sides), fine grain sand paper, strings tied together, silky ribbon, bumpy ribbon, different fabrics, some plastic spoons, and some metal spoons (this is only an activity I'd do when an adult is beside the child so they stick something in their mouth and choke). As she gets older, I'll stick in smaller items like marbles, rocks, grass, etc, and have her tell me how the item feels, how it feels like or different from the next item she pulls out.
G LOVES feeling things; she rolls across the floor to scratch the linoleum, finger strings endlessly, and pets Daddy's chin stubble. The other day while feeding her, a big blob of oatmeal/mixed vegetable goo fell on her tray, and she had more fun playing in it. I decided that I need to make sure I gave her plenty of "feeling" experiences since she seems to be a tactile learner. I let her play in her food (yes, I know it was a bit of a waste of food, but it was only a spoonful) and talked to her about how it felt. Then I wiped her hands off and gave her some dry baby oatmeal and let her play with that and talked to her about the differences (if you try this, make sure you are supervising so your child doesn't put a handful of dry oatmeal in his/her mouth). I know she can't understand what I'm telling her yet, but it is a start in her being able to compare and contrast and tell similarities and differences which are skills tested all throughout the school years. Besides, talking to your child is very beneficial to brain, social, and communication development.
I am also working on a bag of "feelies" for her to continue her exploration. I am putting in velcro strips (both sides), fine grain sand paper, strings tied together, silky ribbon, bumpy ribbon, different fabrics, some plastic spoons, and some metal spoons (this is only an activity I'd do when an adult is beside the child so they stick something in their mouth and choke). As she gets older, I'll stick in smaller items like marbles, rocks, grass, etc, and have her tell me how the item feels, how it feels like or different from the next item she pulls out.
Tuesday, July 19, 2011
Ignorance is Not Bliss
Writer John Q Thompson takes aim at people with Down syndrome with his comment "Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything." This line appeared in an article from GQ magazine. I realize it was meant to be cute and cheeky, but ignorance is not bliss. The writer would be in huge trouble if he said this about gays, people of color or other nationalities, or people in wheel chairs.
Yes, my daughter has Down syndrome. Yes, her life will be different, but it's not ruined. There are around 400,000 people in the United States with Down syndrome. Most of these people are working, some are going to college, and all are loved by their family and friends. This article demeans them and promotes that it is ok to make fun of them.
Please take a moment to send comments about this article to: letters@gq.com.
Yes, my daughter has Down syndrome. Yes, her life will be different, but it's not ruined. There are around 400,000 people in the United States with Down syndrome. Most of these people are working, some are going to college, and all are loved by their family and friends. This article demeans them and promotes that it is ok to make fun of them.
Please take a moment to send comments about this article to: letters@gq.com.
Thursday, July 14, 2011
Never Say Never-A Lesson in My Expectations
I learned an important lesson about my daughter, myself, and my expectations towards the end of last school year. I think about it quite often and wanted to share it.
One day I was having a hard time dealing with my emotions about our daughter having Down syndrome. I was watching some kids in my classroom do very mediocre work and use very little effort. I was talking to the para (a person who comes into our classrooms to help students) in my room about my daughter, Down syndrome, and how frustrated and angry it made me to watch these kids not use their abilities and intelligence the Lord had given them when my daughter would never be able to do some of these things. The para then said to me, "Never say never; don't limit your child. You don't know what she can do.". This may not seem so profound; many people say this, but this was different. This para has a child with a severe disability. To have this person whose child can't communicate, show love in a "normal" way, and needs constant care tell me that affected me more than I can tell you. As parents, we can be the greatest limitation to our children or the base from which they shoot for the stars. I think all parents should remember this and expect the most and the best at all times and never limit what our children can accomplish.
One day I was having a hard time dealing with my emotions about our daughter having Down syndrome. I was watching some kids in my classroom do very mediocre work and use very little effort. I was talking to the para (a person who comes into our classrooms to help students) in my room about my daughter, Down syndrome, and how frustrated and angry it made me to watch these kids not use their abilities and intelligence the Lord had given them when my daughter would never be able to do some of these things. The para then said to me, "Never say never; don't limit your child. You don't know what she can do.". This may not seem so profound; many people say this, but this was different. This para has a child with a severe disability. To have this person whose child can't communicate, show love in a "normal" way, and needs constant care tell me that affected me more than I can tell you. As parents, we can be the greatest limitation to our children or the base from which they shoot for the stars. I think all parents should remember this and expect the most and the best at all times and never limit what our children can accomplish.
Thursday, July 7, 2011
Things I Didn't Know
Since finding out Gracelyn has Down syndrome, I've spent many hours reading information. I find the things I'm not informed about scare me most, and I think that's true for many of us. We are scared of what we don't understand and sometimes deal with that by ignoring, bullying, or making fun of the person or idea. I believe I have an opportunity to help people understand Down syndrome so that hopefully it doesn't scare us so much and perhaps help my daughter and others avoid some the less kind effects of our fear.
Today I want to share a few of the things that stood out to me right away.
1. Down syndrome is chromosome condition that is not caused by anything the parents did. It is an extra copy of the 21st chromosome. There is nothing that could have been done to prevent Down syndrome from happening.
2. There are three types of Down syndrome. The type Gracelyn has is the most common called trisomy 21. Translocation Down syndrome is where the extra chromosome is translocated from another chromosome and can mean that a parent is a carrier. Mosiac Down syndrome occurs after fertilization and only effects some cells, not all like the other two types (originally we thought this was they type to hope for, but our Down syndrome specialist says that this can cause major problems).
3. Most of the babies born with Down syndrome are born to mothers under 35. I thought the likelyhood of having a baby with Down syndrome at my age was rare, but it's not. It is somewhere around 80% (I believe) of babies with DS are born to mother's under 35.
4. Most cases of Down syndrome result in mild to moderate (not severe) mental retardation. With the positive support from family and friends, high expectations, and early interventions, people with DS are able to have jobs, live on their own, and take care of themselves. Expect the most.
5. Some colleges are offering programs for disabled students so students with Down syndrome are now able to go to college.
6. Down syndrome is the most commonly occurring chromosomal condition.
7. There are many support organizations across the United States (and other countries) that support families from day one, provide activities for kids to get together, put on proms just for kids with disabilities, and support research efforts. I've listed a few on my favorite websites that I follow (either their websites or have like on Facebook).
8. There are Down syndrome specialty centers across the United States. We go to the Sie Center for Down Syndrome at Children's Hospital in Denver. Doctor's, nurses, physical therapists, counselors, etc all trained specifically to help kids, adults, and families of those with Down syndrome. Our doctor and the counselor at the Sie Center also have children with Down syndrome so they understand on a level not all medical staff do.
9. Early intervention services make a world of difference and are provided (at least in the state of Kansas) free to families. Our service center provides physical therapy, occupational therapy, speech, and other services from the time they are born through school age. Please let our legislators know how important it is to keep these services when they are wanting to cut them.
10. In studies I've read, well over half (in one study it said 9 out of 10) of prenatal diagnosis of Down syndrome result in abortion. If you've received this diagnosis, please check out the support groups and meet a few families with children who have Down syndrome before you make any decisions. It's hard to swallow, it's a long road, there are lots of fears and tears, but my daughter is a beautiful person who I would not trade for anything in the world.
Today I want to share a few of the things that stood out to me right away.
1. Down syndrome is chromosome condition that is not caused by anything the parents did. It is an extra copy of the 21st chromosome. There is nothing that could have been done to prevent Down syndrome from happening.
2. There are three types of Down syndrome. The type Gracelyn has is the most common called trisomy 21. Translocation Down syndrome is where the extra chromosome is translocated from another chromosome and can mean that a parent is a carrier. Mosiac Down syndrome occurs after fertilization and only effects some cells, not all like the other two types (originally we thought this was they type to hope for, but our Down syndrome specialist says that this can cause major problems).
3. Most of the babies born with Down syndrome are born to mothers under 35. I thought the likelyhood of having a baby with Down syndrome at my age was rare, but it's not. It is somewhere around 80% (I believe) of babies with DS are born to mother's under 35.
4. Most cases of Down syndrome result in mild to moderate (not severe) mental retardation. With the positive support from family and friends, high expectations, and early interventions, people with DS are able to have jobs, live on their own, and take care of themselves. Expect the most.
5. Some colleges are offering programs for disabled students so students with Down syndrome are now able to go to college.
6. Down syndrome is the most commonly occurring chromosomal condition.
7. There are many support organizations across the United States (and other countries) that support families from day one, provide activities for kids to get together, put on proms just for kids with disabilities, and support research efforts. I've listed a few on my favorite websites that I follow (either their websites or have like on Facebook).
8. There are Down syndrome specialty centers across the United States. We go to the Sie Center for Down Syndrome at Children's Hospital in Denver. Doctor's, nurses, physical therapists, counselors, etc all trained specifically to help kids, adults, and families of those with Down syndrome. Our doctor and the counselor at the Sie Center also have children with Down syndrome so they understand on a level not all medical staff do.
9. Early intervention services make a world of difference and are provided (at least in the state of Kansas) free to families. Our service center provides physical therapy, occupational therapy, speech, and other services from the time they are born through school age. Please let our legislators know how important it is to keep these services when they are wanting to cut them.
10. In studies I've read, well over half (in one study it said 9 out of 10) of prenatal diagnosis of Down syndrome result in abortion. If you've received this diagnosis, please check out the support groups and meet a few families with children who have Down syndrome before you make any decisions. It's hard to swallow, it's a long road, there are lots of fears and tears, but my daughter is a beautiful person who I would not trade for anything in the world.
Thursday, June 16, 2011
Beautiful Baby Girl
This post is to introduce our daughter. It is an emotional post for me, but after reading some new research on new testing for down syndrome, I want to share our story through my eyes.
On December 14th, our little miracle arrived into our world bringing with her the unexpected diagnosis of down syndrome. Like most first time mommies, I spent my nine months of pregnancy reading EVERYTHING I could on babies, baby care, baby dangers....you get the point. I decorated the nursery picturing my little girl flouncy through the room running from one adventure to the next; I spent hours at night rocking in glider in her room when I couldn't sleep due to her karate punches, dreaming of our life with her in it.
My pregnancy was relatively uncomplicated except by the normal pregnancy problems. I did have scare at the 20 week sonogram where they thought they found lesions on her brain, but after going to a high risk pregnancy center in Denver twice to have ultrasounds with their super high-tech and up-to-date equipment, we were assured they were just a normal occurrance. In fact, by the second time we went, the spots were gone, but due to that scare, our young ages, and the fact that we'd had two sets of friends with false positives on the protein test, we refused the protein test.
On December 14th, I went to school, but decided after several hard contractions that it was best to leave (didn't want to educate fifth graders in the birthing process). My husband and I arrived at the hospital at 5:00; they broke my water shortly after, and by ten o'clock Gracelyn was here. When they handed her to me, I thought what a beautiful baby. I noticed her small features and later it made sense, but despite all the sonograms, I would have been less shocked if they had told me she was a boy instead of the doctor looking at my husband and I telling us he believed she had down syndrome, but that a chromosome test was needed to confirm.
I was devastated. You never picture anything, but a perfect child in those dreams during pregnancy. That's always somebody else's child. I pictured every child I've ever taught or known who'd had down syndrome. I was drowning in fears.
The experience of giving birth is supposed to be one of the happiest times of your life. It wasn't for us, and that is my biggest regret. I wish we'd known ahead of time so we'd have had time to adjust and been able to celebrate and rejoice at her birth and homecoming.
Our families, our church family, and friends have been amazing. The support and love shown to us during this time has been tremendous. For me, knowing that God has trusted us with this gift and knows we can make it through the trials, makes all the difference. I know it is not random that she is ours. We have all the love in our hearts, a ranch for her to help on on, a garden to grow, cows, pigs, and chickens to take care of, and an amazing set of families to help raise her.
I've since realized that every parent has a special child. I think back to all the kids in my classroom, and almost all of them are facing something they must overcome whether it's a physical or learning disability, choices their parents make, bullying, language barrier, or any variety of things big or small. She is her own person, and we will celebrate each milestone, victory, breakthrough, and discovery at her pace. I love my daughter so much I sometimes think my heart will burst. I still have huge fears for the future and cry a lot (my husband will tell you I'm a great crier....over everything) and probably have years of crying and worrying ahead of me, but this is the here and now.... and right now I have a baby who loves me, needs me, and has her whole life ahead of her. I plan to do my best to raise a well-rounded, happy, helpful, God-loving little girl. Our ranch will offer her experiences and opportunities to do see, do, and learn amazing things. My grandma gave a verse before she was born, and little did she know how much I would think back to it. Jeremiah 1:5: "Before I formed you in the womb I knew you, before you were born I set you apart."
I plan to write occasionally about the our experiences with raising a child with down syndrome so keep following along.
On December 14th, our little miracle arrived into our world bringing with her the unexpected diagnosis of down syndrome. Like most first time mommies, I spent my nine months of pregnancy reading EVERYTHING I could on babies, baby care, baby dangers....you get the point. I decorated the nursery picturing my little girl flouncy through the room running from one adventure to the next; I spent hours at night rocking in glider in her room when I couldn't sleep due to her karate punches, dreaming of our life with her in it.
My pregnancy was relatively uncomplicated except by the normal pregnancy problems. I did have scare at the 20 week sonogram where they thought they found lesions on her brain, but after going to a high risk pregnancy center in Denver twice to have ultrasounds with their super high-tech and up-to-date equipment, we were assured they were just a normal occurrance. In fact, by the second time we went, the spots were gone, but due to that scare, our young ages, and the fact that we'd had two sets of friends with false positives on the protein test, we refused the protein test.
On December 14th, I went to school, but decided after several hard contractions that it was best to leave (didn't want to educate fifth graders in the birthing process). My husband and I arrived at the hospital at 5:00; they broke my water shortly after, and by ten o'clock Gracelyn was here. When they handed her to me, I thought what a beautiful baby. I noticed her small features and later it made sense, but despite all the sonograms, I would have been less shocked if they had told me she was a boy instead of the doctor looking at my husband and I telling us he believed she had down syndrome, but that a chromosome test was needed to confirm.
I was devastated. You never picture anything, but a perfect child in those dreams during pregnancy. That's always somebody else's child. I pictured every child I've ever taught or known who'd had down syndrome. I was drowning in fears.
The experience of giving birth is supposed to be one of the happiest times of your life. It wasn't for us, and that is my biggest regret. I wish we'd known ahead of time so we'd have had time to adjust and been able to celebrate and rejoice at her birth and homecoming.
Our families, our church family, and friends have been amazing. The support and love shown to us during this time has been tremendous. For me, knowing that God has trusted us with this gift and knows we can make it through the trials, makes all the difference. I know it is not random that she is ours. We have all the love in our hearts, a ranch for her to help on on, a garden to grow, cows, pigs, and chickens to take care of, and an amazing set of families to help raise her.
I've since realized that every parent has a special child. I think back to all the kids in my classroom, and almost all of them are facing something they must overcome whether it's a physical or learning disability, choices their parents make, bullying, language barrier, or any variety of things big or small. She is her own person, and we will celebrate each milestone, victory, breakthrough, and discovery at her pace. I love my daughter so much I sometimes think my heart will burst. I still have huge fears for the future and cry a lot (my husband will tell you I'm a great crier....over everything) and probably have years of crying and worrying ahead of me, but this is the here and now.... and right now I have a baby who loves me, needs me, and has her whole life ahead of her. I plan to do my best to raise a well-rounded, happy, helpful, God-loving little girl. Our ranch will offer her experiences and opportunities to do see, do, and learn amazing things. My grandma gave a verse before she was born, and little did she know how much I would think back to it. Jeremiah 1:5: "Before I formed you in the womb I knew you, before you were born I set you apart."
I plan to write occasionally about the our experiences with raising a child with down syndrome so keep following along.
Subscribe to:
Posts (Atom)