Down Syndrome

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Down Syndrome
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    What's New in Down Syndrome
    Dan Szostek

    Thanking the Teacher Who Believes in My Daughter With Down Syndrome

    Dear Ms. Michele: Thank you for believing in our Abby. Thank you for believing in yourself that you could teach a child with Down syndrome. Thank you for rising to the challenge of communicating with a child who is non-verbal. Thank you for helping Abby soar. “I want to see Abby soar.” Those were the words that you said to us during Abby’s parent-teacher conference. Those were also the words that reduced my wife and me into a pair of glassy-eyed adults in much need of a tissue. As you know, Abby is our only child. After she was born, we spent 78 days in the NICU of Children’s Hospital of Philadelphia. So it goes without saying that we were extremely protective of our little miracle. She was just 3 pounds at birth and still remains on the smaller size on all the growth charts. As an only child, and non-verbal, we were also very nervous about how Abby would handle herself around other adults and peers. When we first met you, Ms. Michele, we told you that Abby was not speaking yet and used sign language to communicate. We explained that she knew about 200 signs at that point. My wife and I did detect an element of worry and concern. We could sense your discomfort with the fact that Abby could not talk. But we totally expected a reaction like that after hearing this type of news. Flash forward to today and you have become a champion for sign language. You were extremely open to learning how to communicate with Abby through signs. Thank you for working so hard with Abby’s speech therapist to not only educate yourself in signing but to also teach your entire class to sign. You have totally exceeded our expectations. To hear the love in your voice when you share stories about the children signing in class and at home warms our hearts. When we talked about our passion for having Abby included in a Catholic School, you shared a story with us about your friend’s brother who had Down syndrome. As a young girl, you wondered why he could not attend school with the rest of the children in the neighborhood. Now, as a professional educator, you wonder what opportunities that young man missed by not being included in the local school. Thank you for sharing your experience; it has fueled our passion to ensure Abby is always included. The school principal told us when we first met her that she never wanted to deny a student a Catholic education because of a disability. It is teachers like you, Ms. Michele, that are making inclusive Catholic schools a reality. Lastly, we would also like to express a heartfelt thanks for the way you and the whole school jumped right in to embrace and celebrate World Down Syndrome Day. We were so grateful to be able to come in that day and read a book about kindness to your students. Seeing everyone, including yourself, “Rockin Your Socks” for Abby and other individuals with Down syndrome, showed us firsthand the caring environment you have created in your classroom. And when the local news showed up to interview you that day, we were so proud! And we will never forget your quote, “No matter what life throws at you. You just got to pull up your pants, put on your wacky socks, and just tackle it!” Amen, Ms. Michele! Amen! In closing, I come back to your words to us: “I want to see Abby soar.” Those words touched our hearts. Those words assured us we made the right schooling choice for Abby. Those words make us forever thankful that Abby has you as a teacher. Sincerely, Abby’s Mom and Dad

    Community Voices

    Superstar Heroes

    Giving birth to my son was such an emotional moment like all births. Being told shortly after that he has a genetic syndrome just by his appearance was even more emotional for me. A few months have passed, multiple specialist later the results were in. My son who we call Aj had a full whole genome sequence study on his DNA and it came back with no real answer. The changes that were found in his DNA had little to no evidence to support them and that made his condition a #RareDisease . I mean extremely rare! As the years came and went Aj was diagnosed with plenty of other medical disabilities. Some were more challenging than others but here are just a few to name; ADHD, Autism, #Microcephaly and more. As a mom I wanted to educate myself as much as possible so that I can help Aj get the best treatments, therapies and at home care I could. I also wanted Aj himself to understand that he had several disabilities. I encouraged Aj to strive like any other child and that his disabilities were limiting him in some areas but if he poured his heart into anything that his outcome would be limitless. I went to the library, book stores and online book shopping trying to find stories that were relatable and could help me explain Aj’s medical conditions without boring him. That was really hard I couldn’t find books that shared more than one condition at a time. So I wrote one! As fist time Author I became intrigued about helping parents, educators, physicians explain disabilities and life in general of a special needs child. I started with a series titled “Superstar Heroes” Aj goes to camp is the first book in the series I have self published this book in both English and Spanish. It is available on retail online book platforms. I have taken the negative and turned it into my positive story . I continue to educate myself, others, Advocate for children with special needs and also Interpret for Spanish speaking individuals so that they can better understand their conditions. Aj goes to camp features 6 diverse children, 6 disabilities with a common goal of inclusion. The six disabilities are Autism, #CerebralPalsy , #DownSyndrome , #HearingLoss /Deaf, #MuscularDystrophy , #RareDisease featuring Aj. All kids have the Cape-Abilities to be the greatest! Support us, spread the word and become a S.W.A.N kid too.

    Michelle Tetschner

    Encouraging Young Adults With Down Syndrome to Be Independent

    Some days, I get tired of being judged. Some days, I get tired of people looking at me like I should jump in to help my child. I can see in people’s eyes that they think I’m a bad mom. I can see that it would be easier for them if I stepped in and took over. I can see that they are watching my child and me, and judging us. When my child with Down syndrome was a baby, people would say to me, “Aren’t you so worried about his future?” I would say, “I’m also worried about my other children as well. But I’m not going to let my fear of the future control today. And I try to take things in stride.” When my child went to elementary school, I stood up for him and his educational needs. Other parents would say to me, “Are you not worried about the teachers getting mad or upset with you?” I would say, “I am my child’s voice. I need to stand strong for him.” In junior high school, people would say, “Aren’t you worried about your child getting bullied or having a hard time?” I would say, “This is the real world and kids need to find their place and belong. The other students need to learn from him too! They will learn patience and kindness, and how everyone is more alike than different.” In high school, people would say, “Why isn’t your child doing life skills?” I would say, “That’s my job as a parent. We do chores, laundry, and cooking at home. School is for education, sports, and growing strengths and talents.” Now as my child is becoming more independent, I need to let him go and try new things. There are people in the neighborhood who look at me like I’m too lenient, allowing my young adult to walk to the store by himself on a regular basis. But the thing is: young adults with disabilities will be walking around the high school campus by themselves. They will be walking around a college campus by themselves. They will be at a job by themselves. They should be out in this world walking around by themselves, just like everyone else! They deserve to be thought of as a valued part of society. And they need to try new things! We know that there will be failures. We know that some days will be harder than others. But we’ve got to keep trying. I can’t be a helicopter parent, hovering over my child all the time, doing everything for him, and then expecting him to succeed without me. I can’t expect to do everything for my child, and then expect them to be able to do it by themselves. I have to let him go alone if I expect him to have a job. I have to let him cook if I expect him to cook at his apartment. I have to let him stay home alone if I expect him to live independently. I need to let go in a safe place. I need to let him have the dignity of risk, and to try and make mistakes. I need to let him fail and help him grow from his life lessons. Some days it is hard being judged and watched — but it’s worth it!

    Community Voices

    I'm new here!

    Hi, my name is zoda8pk. I'm looking for affordable clothing for an 11 year old girl with Down Syndrome. She is currently wearing a size 16 girls, but the pants are never quite large enough to cover her bottom and are way too long


    3 people are talking about this
    Melissa Wakefield

    Finding Support as a Single Mom to a Child With Down Syndrome

    I was 46 when I found out I was pregnant.  I was pregnant when my oldest child had just given birth to her first kiddo. I was a grandma and still had 11- and 13-year-old boys at home. I was teaching at a state school in a behavioral disability classroom. I thought I was nearing the end of my teaching career. My husband tried to talk me into an abortion. I couldn’t see why. We had raised his daughter and were still raising our two biological boys — we could add another child to the mix. We were employed and housed, and we could be parents again. I asked not to have an amniocentesis since I was almost three months along before realizing I was pregnant. When our daughter was born, I knew she had Down syndrome. The hospital said she was “fine” and sent us home after one day. They would only share that she had jaundice. I knew this wasn’t right, though. Her fingers and hands were blue, and her eyes were clear. I took her to the pediatrician, who immediately put a pulse oximeter on her and found out that she was deprived of oxygen. I spent the eight days that my daughter was in the NICU at Children’s Hospital praying. Once doctors found three holes in my daughter’s heart and gave her an official Down syndrome diagnosis, we were released home. Fast-forward three years. I found myself driving in the middle of the night, windows down, -6 degrees outside. My 3-year-old girl was in the back seat. We had no clothes, no diapers, and no place to sleep. My husband of 24 years had asked for a divorce, and when I refused, he had insisted. I found out later that he had planned for months to divorce me behind my back. I was a single mom — and still am six years later. We survived the below-freezing weather that night with the help of my family 3000 miles away. I lived through the divorce, but my two sons chose to live with their dad instead of with me. I lost my career of 14 years because we lived in my husband’s county since his discharge from the Marines. I had survived moving across the country, getting another job, and living with my parents for a year at age 50. I lived through moving back across the country, knowing I would be alone without any support because my boys’ father was abusing them, and I thought I could help. I got another teaching job and bought a house on my own with no one’s help. I was five years past my 24-year marriage when COVID-19 hit. I was told I had a week to put all of my coursework online and begin teaching my students. My daughter’s school told me that I would need to teach her from home. I did all of this, and I didn’t ask or get help from anyone. Her father had fought hard not to have any custody or pay any child support, so I was on my own. I had chosen a home in one of the areas with the best schools in Missouri. I soon learned that this was not the case for students with disabilities. COVID-19 was a nightmare. They shut down the school for three weeks but came back after summer break as if nothing had happened. Masks were optional. As a mother of an immunocompromised child, I was panicked. Thinking about what would happen to my daughter if I were to get sick terrified me. I went into overdrive. My “fight or flight” response kicked in. I washed everything daily, and I kept bottles of bleach all over my house. If my daughter got sick, I would have to stay home with her, and if I got COVID-19, we might die in the house, and no one would know. The neighbors would not be of help since they didn’t think it was a big deal. People began dying — students, aunts, uncles, and cousins. It was a nightmare, but I felt I had been living one for years already. Then, two years into the pandemic, my stepdaughter was murdered by her live-in boyfriend of 14 years. I broke down. I called a psychiatrist for help. I realized that my friends and family had had enough of my life. I certainly had too. It was the best thing I’ve ever done. Talking to someone without skin in the game is freeing. You can say anything, and they won’t defend or scold you. My psychiatrist didn’t solve my problems,  but she helped me sort through them in a calm fashion. I’m still dealing with my child’s lack of inclusion in a state where things could be a heck of a lot better — but I have someone in my corner now. I know I’m doing the best I can for my little girl and the thing is, she doesn’t care about the struggles. She loves and laughs every day. When she’s old enough to understand, I’ll tell her everything. Parenting is a role that never ends, and we often have to just keep on rolling with it. I just try to roll forward. To all my fellow single moms with children with Down syndrome, keep rolling on. You’ve got this!

    Community Voices

    My adult son with Down syndrome, has recently been diagnosed with celiac disease, which took months for them to diagnose after some difficult symptoms. I'm curious if anyone has had a same experience?

    3 people are talking about this
    Community Voices

    So Many Barbies—and Why We Hold On to All of Them

    <p>So Many Barbies—and Why We Hold On to All of Them</p>
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    Community Voices

    Info on Regression in Ds

    <p>Info on Regression in Ds</p>
    1 person is talking about this
    Community Voices

    What I've Learned Is Important in Raising a Child with Down Syndrome

    1: Don’t Wait For Readiness
    Start early on any endeavour, they will need more time to master a skill, so give them more time. We applied this successfully with everything from toilet training to crawling and walking to second languages.

    2: Don’t Listen To Experts
    I hate painting with such a broad brush, but if we had listened to experts who told us what a child with #DownSyndrome isn’t capable of, I shudder to think how low functioning my son would be.

    3: Never Say Die – No Retreat No Surrender
    Never give up on a goal that will better your child’s life. They can learn just about anything – it takes time and patience, which makes it hard, but not impossible.

    4: Never Say Never
    Science and technology make a lot of things possible that were unthinkable in the past. Prior history is not a measure of the future as they say in investment circles.

    5: Do Sports and Exercise
    There is a reason the Special Olympics exist. Purely intellectual pursuits might not be a good fit for a child with #DownSyndrome (though never say never), so sports and exercise are a healthy outlet that will not only improve strength and co-ordination but there can also be neurological integration benefits that will pay off in academic or other mental scenarios (problem-solving, spatial planning).

    6: Peer Modelling is Important
    Having an older sibling to imitate has been a boon to our son. While the Special Olympics is good, we have always placed our boy in extra-curricular activities with typical children, usually of the same age.  In sports and life, we end up performing at a higher level when in a situation with higher-level players.

    7: Fight For Inclusion
    Getting access to the opportunities you want for your child in sports, education and art is a constant battle.  Some doors seem closed, some seem open (but aren’t completely open).  The world is inherently and systematically ableist and the system would prefer it if your child would just go away or not exist at all.  It’s exhausting, but if you remember you’re fighting a longtime campaign, hopefully, you can not let individual lost battles discourage you.

    8: Live Life Out Loud
    Even positive stereotypes (people with #DownSyndrome are always happy) ultimately have a negative effect.  We mostly post about his accomplishments, but the more we let people know about his life, the more people know about an individual with #DownSyndrome .  Stereotypes and ignorance are best fought by simply getting to know people – nowadays, it’s possible to ‘know’ someone you don’t even get to meet in person.

    9: Toilet Train Early
    There’s a wealth of #Programs (classes, camps, etc.) that can enrich a child’s life, but there are very few people who are willing to change a dirty diaper.  Points #1 and #4 were crucial in achieving this milestone.

    10: Look For Ways to Make it Fun
    Spot words from the week’s spelling list in reading or on signs on the road.  Incorporate the physio exercises they are to do into playtime.  The more you can embed the extra work you have to do into your day-to-day life, the more benefits from that work you will reap.

    Community Voices

    I’m new here!

    Hi, my name is itzae. I'm here because our newborn has been diagnosed with down syndrome.


    3 people are talking about this