Down Syndrome

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    The magical nature of kindness and inclusion

    Parties and Hermione.

    Yesterday, I sniffled into my tissue with emotion, as we watched our little girl with Down Syndrome being enveloped into the class fold at a classmate’s birthday party.

    You see, it’s not always easy for Hermione to slip easily into party mode. There are a number of variables that make it harder for her to work out what to do and how to behave in these situations.

    There are also sensory factors, such as noise and lighting, and the fact that generalisation is not easy for Hermione.

    She may know your face, but seeing you out of context may render her confused or uneasy.

    But yesterday, the magical nature of her class mates brought pure joy to us as parents of a little girl with additional needs.

    Did we have tears at the start?

    Yes.

    Did we have to sit with Hermione for a while, as she squirmed a little in our arms as she made sense of the room and the surroundings?

    Yes.

    Did we, as we often do, have to shadow Hermione around the play equipment at first, as she grips our hands tightly for reassurance?

    Yes.

    But ten minutes later, as she became more confident to tackle the soft play equipment, two classmates reached out for her hands, and they guided her around the equipment, all the while, smiling and waving, and we stood back, in awe of the gentle kindness of her classmates.

    Another approached her and signed beautifully, ‘Hello Hermione’ and I could see that she knew her new friends speak the language of both Makaton and kindness. Her eyes glowed with a new-found knowledge: that her friends have the capacity to adapt to her way of thinking and communicating.

    We took a breath and for the first time, stood back at a party and let the beauty of acceptance and kindness play out before our eyes.

    It was the best feeling in the world.

    She is part of the gang. She is Hermione.

    helenbielby.wixsite.com/ourgentlehermione/post/the-magical-n...

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    I'm a disabled Caretaker #ChronicPain #ChronicPancreatitis #LungCancer #DownSyndrome

    I've been recovering from a car accident I have abdominal wall denervation and a crushed vertebrae and three herniated discs. I talked morphine every day. I have anxiety and depression. I live and care for my Downs syndrome daughter as well as my 82 year old mother who has pancreatitis the beginning of dementia and has just been diagnosed with lung cancer. She is coughing up blood. My mother smoked all her life and I have tried everything to slow and stop her from smoking and she won't. It breaks my heart every day to see this so I stay in my basement most days I need help I can't cope anymore. How can I stop her from smoking ??

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    We are in need of a new co-leader for our group. Please see info below. We need someone to encourage, empower, support & be there for other members!

    We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.

    It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

    Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!

    I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.

    You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

    #Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
    #Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether

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    Carving out my new identity as a parent carer to my daughter with Down Syndrome

    I’ve thought a lot lately about my identity as a mum and a carer.

    Just after we were given our prenatal prognosis of the high likelihood that Hermione would be born with Down Syndrome, I remember saying to my husband, “what if I have to give up work?”

    I remember it being a thought I kept revisiting throughout the pregnancy.

    Looking back, I realise I was trying to grasp and seek out my new identity; not only as a mother, but as a potential carer.

    I won’t lie: it was daunting.

    I’d been a single mum to Hermione’s sister for six years before I met my husband. I’d worked full-time in education; juggling, like a lot of people do, the responsibilities and demands of parenting, and the commitments and pressures of work.

    I just about coped and I thought I knew who I was and perhaps I was nearing the finished product of me.

    Fast forward a few years, and suddenly this carved out identity seemed on shaky ground. I was free-falling in a universe unfamiliar to me.

    Work was part of me; and me part of it.

    What if it was no longer a part of me?

    When Hermione came along, I returned to work part-time for a period, and reverted back to the version of myself I knew.

    Eventually giving up work altogether to become Hermione’s full-time carer, was a strange, but for me, necessary thing.

    The anxiety of balancing it all was causing me to buckle.

    But I struggle with not seeing colleagues everyday: the same ones I’d seen for 18 years.

    We struggle as a family on a lower income and the reliance on benefits.

    I worried that I wouldn’t be able to unpick who I am at all.

    It’s taken nearly a year to really get to know this new version of me and I’m still working on it.

    I take life slower because Hermione does.

    I have different expectations of myself and daily life.

    Being a parent carer does change you; whether you’re a carer who works full-time, part-time or has chosen to leave work. You choose the thing that is right for you: to keep you sane.

    I realise that it wasn’t the end of my identity when I gave up work, but that I’m evolving towards a direction I never expected to.

    We always say Hermione has made us better people, and that is the truest thing.

    She is an unexpected joy who has unlocked parts of my identity I never knew I had.

    At 20 weeks pregnant, it seemed unthinkable to me that I would not have my identity of work.

    I wish I could tell my former self that it was going to be okay. Different, but okay.

    And that identity can be sought out in the most joyfully unexpected places.

    helenbielby.wixsite.com/ourgentlehermione/post/carving-out-m...

    #DownSyndrome

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    The book I wish we’d had when my son was little

    My son has #DownSyndrome . When he was little, there weren’t many books that explained Down syndrome well for young friends, family, & classmates. There is one now!

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    God, What Did I Do To Deserve This?

    There are a few moments in life that have such an impact on you that just thinking about it can bring back all of the raw emotions just like they are happening again. One of those moments for me was the day I found out my baby I was carrying would have Down syndrome.

    I still remember every single detail about that day. I was standing in the toy section of Dollar Tree with Luke and we were just about to walk to the check out register when my phone rang. I told my doctor that I was checking out but he didn’t want to tell me while I was in the middle of the store so he told me he would call me back in five minutes. I’m pretty sure time stood still during those 5 minutes. I sat in my car staring at the clock with my stomach in knots. I knew something was wrong. It was my doctor calling and not the nurse. He wanted me alone to talk. I knew this could only mean there was a problem. I tried to find something for Luke to play with in the backseat so he wouldn’t be paying attention to me.

    After what seemed like hours, my phone rang again. I’ll never forget his first words to me, “I am so sorry to tell you this but your test results have come back and the baby is positive for Down syndrome.”

    I just sat silently looking at Luke in the rearview mirror and slowly pulled my sunglasses from the top of my head to my eyes. I could feel them welling up. I didn’t want Luke to see my crying. The rest of the conversation was pretty much a blur. It was like I went into some type of trance. I could hear him talking but it was almost as though he was talking to me from a dream because it felt so far away.

    At the end of the conversation, I asked the doctor if I was having a boy or a girl. He seemed surprised by my question and told me that he forgot to look at that and would call me back tomorrow to let me know.

    Sadly now I realize that the majority of people that find out they are having a baby with DS, will choose to abort them. So I’m sure he was caught off guard to hear I still wanted to know. But that was my BABY in my belly. It wasn’t my Down syndrome in there. I was already in love with my baby and there was never a question on what I would do.

    I somehow managed to drive to McDonalds after I hung up with him. The whole time barely able to see because I was fighting my tears for Luke. I had been successful with keeping him busy and he had no idea what was going on.

    I called my dad and asked if I could bring Luke over for a while. When we got there, Luke immediately went off to play. I took a huge breath because I knew getting words out would be next to impossible.

    I managed to ask my dad if he would let Luke stay there for a few hours. That Clint was getting off work and I needed to talk to him privately. My dad could see my eyes welling up and asked me if everything was ok. That was all it took. The tears came flooding out and almost incoherently I sobbed to him “No! My baby has Down syndrome!”

    I felt like I was going to collapse on the floor. My father is truly one of the best men I have ever known. However, he is not a very affectionate man. And that was always a good thing to me because I was not affectionate either. I knew he loved me. It didn’t have to be said and he didn’t have to hug me for me to know.

    But in that instance, just as I thought I would collapse, my dad grabbed me and hugged me so tight. He looked at me and said “It’s going to be okay. We are all going to love this baby just like we do Luke!” He held me a few more seconds and let me just finally sob a little. Then I wiped my face and got ready to leave so I could tell Clint what was going on.

    I honestly do not remember anything about initially telling Clint. I don’t remember his immediate reaction. I think it was shock more than anything. But what I do remember was once it was all out there, just gasping for air through the sobs and yelling “Why????? What did I do to deserve this??? Why is God punishing us???”

    I did not go to sleep that night. I stayed up the entire night crying uncontrollably. I just kept praying asking God why was He going to punish my innocent baby. Begging Him to take his wrath on me but not my baby.

    Those 24 hours were without a doubt, the hardest I had ever experienced. The next several months were not much easier.

    We met with a high risk specialist that pushed for us to terminate the pregnancy. We read horrifying stories of parents that would just abandon their child with DS because they just couldn’t handle it. We were met with so many people telling us how sorry they were. It was nothing like the exciting pregnancy I had experienced with Luke.

    I would love to say all of that changed as soon as we had baby Ace, but that would be a lie. We had a long period of darkness, sadness, and depression. But eventually, I had my “Ah-Ha!” moment with Ace and started to see that he was a great baby. I started bonding more with him and fell in love all over again.

    You know the saying, “the more things change, the more they stay the same”? Well, I’m afraid that applies here as well.

    You see, it’s been 2 1/2 years since Ace made his entrance into this world. Yet just the other night, as I was lying beside his crib waiting for him to fall asleep, I found myself sobbing once again.

    Once again I caught myself crying out to God asking “what did I do to deserve this??”

    The difference was this time, I was crying out in gratitude. I sat there looking at Ace as he was slumbering off and was just overwhelmed with how much love I have for him.

    Ace has brought happiness, joy, and love to our entire family in ways that is impossible to put into words. He has taught us so much. More than we will ever teach him.

    Ace has taught all of us what true unconditional love looks like. His heart is more pure than anything I could have ever even imagined.

    He has more determination and strength than any full grown adult I’ve met. He is the embodiment of caring and empathy.

    It has become a little bit of a joke in our family. Luke has and will always be my mischievous boy. So he finds himself in trouble way more than he should. He loves to point out when he gets in trouble that Ace hardly ever gets in trouble. To which I immediately point out that if Ace does ANY of the things that Luke does, he will also be in trouble.

    Luke will inevitably reply with “Well Ace doesn’t usually do wrong. He has Down syndrome, remember?!” I asked him one time what that had to do with anything and Luke looked at me (with his “you can’t possibly be this dumb” stare) and said “you know Down syndrome means you are born with extra! So Ace can’t help it that he is extra sweet, extra loving, and extra cute!!!”

    I personally think this is the best explanation of Down syndrome I have ever heard!

    I have come to accept that our life was forever changed, sometimes in very hard ways. Luckily we were never a normal family to begin with so we think Ace fits in perfectly with our unique family. We have had to make a lot of adjustments. There have been some hard time and some scary times. Luke and Ace have typical sibling spats. But I have also never seen two brothers that love each other as much as those two.

    I know now that there will likely be many more times that I will lose control and call out to God asking him what we did to deserve this, such as when Ace gets so sick and has to have medical procedures no small child should ever endure. But I also know without a doubt that there will be even more times that I cry out the same question to God with happy tears in my eyes, such as when Ace finally walks without his walker or the first time I get to hear Ace tell me he loves me.

    One thing I’m even more sure of than that is that I would not trade a single one of those tears to change him. I still don’t know what I did to deserve this, but today I just want to add one more thing to pray out…

    THANK YOU GOD FOR BLESSING OUR FAMILY WITH THE MOST PERFECT GIFT EVEN WHEN WE DON’T KNOW WHY!

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    Lessons in Love From My Late Brother With Down Syndrome

    Growing up so close in age to a special brother wasn’t always easy- it was actually hard. Just two years younger- I remember the pointing ,stares, whispers, laughs, the questions and the all to familiar phrase “your brother is re….ed” painful…..

    I remember my mom taking Daniel just before closing in early evenings to to teach him to swim away from the stares. I remember going down to the park and kids not allowed to play with Daniel or them running away from him. Many times I would be allowed to play but not Dan and we didn’t understand why. Sometimes he even had dirt kicked on him or he would be pushed and I remember a bloody nose or two. I’d go home in tears unable to ever say anything. I’d just cry. My older sister would beat the bullies up- I always wished I was strong like that. It was the older kids that accepted Daniel and let him play. Kids my age just didn’t get it. In 9th grade Daniel was brought over to my school to eat lunch. One kid always relentlessly made fun of me. He saw Daniel come over to me and hug me so he yelled in front of the entire courtyard- oh my God you finally found a boyfriend! I stood up and said- he’s not my boyfriend he is my brother! It was the first time I found my voice and it felt good. I was resentful of the many kids I went to school with that made fun of Daniel all through the years. It wasn’t until he graduated from The Life Skill’s program at Midland High School and I saw the entire graduating class stand for him when they called his name- that I knew our peers had matured and had grown to respect him and appreciate his unconditional love. Compassion matters! This moment made me understand these people had their own insecurities to work out and the way they treated others was really more about themselves and how they were brought up -not really about me or Daniel at all. I found hope in people but it was a very hard way to learn that everyone has their own journey to walk. A friend sent me the link to our recent city council meeting. I wasn’t aware of everything that occurred during the session because I was so caught up in the glorious moment of celebrating Daniel Kirwan Day in our hometown. Looking back on the recording I chocked back tears when I noticed Daniel once again received a standing ovation from the entire room- our Mayor, City Council members, City Manager …everyone! Long after Daniel has passed, he continues to teach me, and others, powerful lessons. Once again I have been reminded using my voice for others matters! I’ve had some critics on my recent journey through passing Daniels law in Texas- a state law making it illegal to discriminate based on disabilities when it comes to organ transplants (our Daniel wasn’t given this opportunity when he needed a kidney) I had times where I was crushed by hateful words- I felt like I was right back on that playground many times and then I once again remembered their behavior was truly about them and not about me or Daniel. Through this legislative process I also saw the kindness of people- many I didnt even know. There is still a lot of good in our world. Parents, teach your children to be kind and talk to them about different kinds of people they will encounter. I do think the world is a more accepting place than it was when I grew up but I also know we have a lot of work to do. Speak up- make that difference! If this shy little girl on the playground can do it- anyone can!

    #DownSyndrome

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    Now I Know - What I Know Now About Down Syndrome

    For both of my pregnancies, I denied all prenatal testing. Ultimately I didn’t feel it was necessary for my family. The moment I laid eyes on my beautiful baby, I knew something was different – I even asked the doctors. No one said anything but tears welled in my eyes and I nestled into him as securely as I could as they placed him on my chest.

    Shortly later in the recovery room, the doctors got real with me. They began to point out the gap in his toes, the single palmar crease across his hand, the thicker fat at the back of his neck, the fold on his ears, the almond shape of his eyes… they told me he would need genetic testing as they believed he had Down syndrome. Then they asked me why I didn’t get tested…. the tears in my own eyes were reflective of those in the eyes of the doctors and nurses around me. “I’m only 30.” That was my response to them. A myth believed that children with Down syndrome were only born to older women (in actuality, children born with Down syndrome are predominately born to women under age 35 due to higher rates of birth for that age group, though women over 35 do have a higher chance of giving birth to a baby with Down syndrome than the younger age group).

    When you give birth, you’re supposed to be happy. The baby is supposed to be celebrated. You’re not supposed to be filled with doubts, worries, and fears. Yet that is what is given to many families who receive a #DownSyndrome diagnosis for their child. As a society, including our medical bodies, we’re told that Down syndrome is a bad thing. It’s something to be feared. It is less than.

    What if instead of telling these families about all the worries they should have for the child… what if we told them about the good instead? “Congratulations! Your baby has Down syndrome! They’re going to have an amazing life!” How much better would those initial months with my baby have been if I was told that my baby should be celebrated instead of watching my medical team cry and hear them deliver the “bad news” to me.

    Nearly five years into our Down syndrome journey, we have come to learn that not only should a baby with Down syndrome be celebrated, they should be cherished as any other child because – just like any other baby – their future is limitless. Everybody has something that they deal with or overcome in life. Everybody. They are not made to feel less worthy or less capable because of that. So why should Down syndrome be a precursor for a bad life?

    People with Down syndrome are worthy. They are capable. Their limit is often one imposed by someone other than themselves. Instead of focusing on someone’s inabilities, let’s focus on their abilities. Let’s give every child every opportunity to become the best versions of themselves because that is the goal. The goal should never be to be the best. Most people will fail under those circumstances. But if we give every child the permission to be whoever they are and be good at whatever it is they are good at, then we can really celebrate them.

    For eight years the Waterloo Wellington Down Syndrome Society has been working with Hilary Gauld of One for the Wall Photography. Every October they release a oneforthewall.shootproof.com/gallery/19295433 meant to bring awareness and understanding of people with Down syndrome.

    They want people to know the good instead of the bad. They want to share what we know now…. not what we were first told or what we first imagined. They want people to see the gift that is Down syndrome. The beauty of that extra 21st chromosome. A life with Down syndrome is a life worth living.

    Please follow along with the Waterloo Wellington Down Syndrome Society as they share “Now I Know” during the month of October on their social media channels.

    Twitter & Instagram: @wwdss_wwdss

    Facebook: @WaterlooWellingtonDSS

    Not a day goes by that I don’t look at my child and say how grateful I am that he is in my life. I really am lucky. I wish someone had told me that right away. He is perfect not despite having Down syndrome but because of it. Now I know…