The Speech Teacher’s Top 5 tips for Children with Down Syndrome
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A Sister’s Love is Unconditional, No Matter the Diagnosis (Autism and Down Syndrome)
My name is Analia and my brother Eli has a dual diagnosis of Down Syndrome and autism.
The doctors suspected the Eli had Down Syndrome after my mom’s triple marker, and this was back before the NIPT. They sent her for an amnio and the amnio came back negative, so my parents weren’t worried anymore. When Eli was born they found out he actually did have Down Syndrome, so it was still a shock to my parents. I was only 6 when Eli was born, and my younger sister was 4. We have one other younger brother who is 11 months younger than Eli. I don’t really remember ever talking to my mom about how Eli had DS. I’ve just grown up with this being normal for me.
Triplets and a Down Syndrome Diagnosis
We have shared so many stories on the blog since it began 2 years ago, but this is the first time we have had the privilege of sharing a story of triplets. Meet three of the cutest triplets ever, and find out how their family learned that one of them had a little extra. Triplets and a down syndrome diagnosis.
Hello, my name is Shawn and I am the mother of one-year-old triplets,
Before becoming a mom, I worked in Marketing and enjoyed traveling, backpack camping and hiking with my husband, Jay. God has blessed me with three beautiful children and has given me a new path to walk on! This is my journey from struggling with fertility, a very complicated triplet pregnancy, an unexpected Down syndrome diagnosis and raising three very different tiny humans.
January 29, 2018 my life was turned upside down; not because I had given birth to three babies, I was expecting three babies, but one of my triplets was suspected to have Trisomy 21, Down syndrome. My C-section delivery was incredible and a blur. There were over 20 people in the operating room, consisting of my OB/MFM, her residents and nurses, the head Neonatologist and three NICU teams.
Having a high-risk triplet pregnancy, I was monitored much more closely than a singleton pregnancy; anatomy scans and heart monitoring every two weeks and at 28 weeks, I was placed on medical bed rest, where I would spend 40 days until they were born. There were never any suspicions or indicators of Down syndrome, even with all the extra scans, monitoring and testing. In fact, during the last ultrasound I received, my doctor commented how “perfect” Coldon’s aortic arch was. Looking back on the day they were born, receiving Coldon’s diagnosis post birth was a blessing. A pre-birth diagnosis would have only increased my stress during an already stressful pregnancy.
I vividly remember, as the doctors were completing my procedure, the Neonatologist coming to my side and asking if we had been informed Coldon might have Trisomy 21. I didn’t even know what Trisomy 21 was. He further explained Coldon had some soft indicators of Down syndrome; the gap between his toes, the single crease on his hands and his hypotonic state.
This isn’t the way I would have preferred to learn of Coldon’s diagnosis. but Jay later told me he knew something was wrong when the nurses were pulling Coldon’s legs together and they would flop back down. The doctor knew Jay was aware and concerned, so he decided to talk to us then instead of waiting for the office and closed doors. Another part of our diagnosis I didn’t appreciate was my OB/MFM coming to my room two days later and apologizing to us because she didn’t recognize any indicators and we weren’t informed before he was born. We immediately stopped her and asked why she was apologizing? We explained we wouldn’t have done anything any differently had we known. Yes, it would have been nice to have been a little more prepared for Coldon’s diagnosis, but NEVER apologize to someone after they have just given birth to a child, period; especially if the child has a disability.
The diagnosis didn’t resonate with me until well after the delivery was complete. There was so much going on and all I was able to focus on was the fact I had three babies in the NICU. At the time, I was just thankful my babies were healthy and I was no longer pregnant, but Jay experienced all the emotions of Coldon’s diagnosis that day. I actually cannot wait to write his diagnosis story, as it is very different from mine. He recently told me, the day the babies were born, he went to his family in the waiting area and started crying. He was scared of Coldon’s diagnosis, because he didn’t know what to expect and we weren’t prepared.
When my parents arrived to the hospital, I told them the doctors thought Coldon had Down syndrome. I’m not sure if I was in shock or still heavily medicated, but it was the most apathetic statement I’ve made about his diagnosis. There was absolutely no emotion behind it. I was afraid of telling my dad, as I was worried he wouldn’t know how to connect with him, because he was “different”. In the three weeks the babies were in the NICU, we had plenty of driving time to reflect on our lives. It didn’t take us long to come to the realization of how lucky we were to have been chosen. We had three beautiful, healthy babies and to have a child with a special need; God chose us!
Coldon’s first days were filled with a myriad of tests, including the genetics test to confirm his diagnosis, an Echocardiogram, EKG and lung x-ray. Medical staff came to Jay and I with what felt like a never-ending amount of questions and information; I don’t remember when the tests were completed, but when the team of doctors and residents gave us the results of the genetics test, they made sure we knew Coldon had a healthy heart and how his aortic arch was “textbook perfect.” I thought, ok that’s great; every new mom wants to know their baby has 10 fingers, 10 toes and healthy heart, right? What was going through my mind was how Coldon had the cutest feet ever and he was just a little more floppy than Ella and Greyson. Well, little did I understand how incredibly important a healthy heart is for a child with Down syndrome.
Jay and I chose to tell our closet friends and family about the diagnosis, but we waited until after Coldon came home from the hospital to tell the world. We needed time to digest the information, to wrap our minds around his diagnosis and we needed time by ourselves with Coldon, without hundreds of questions or having to explain. I cried the day we chose to tell everyone, Coldon was diagnosed with Down syndrome. The amount of love and support everyone showed us was overwhelming. We were expecting questions and everyone’s opinions, but instead we received love and praise!
Coldon spent 49 days in the NICU, because he struggled with feeding from a bottle. Once Coldon finally drank 16 bottles in a 48-hour period he was able to come home! Our family was home and complete. However, this was when the reality of Coldon’s diagnosis began to affect us.
Coldon’s greatest challenge has been feeding difficulties and when he came home, I finally broke. His feeding challenges have been the hardest for me to accept. Many days after an exhausting battle with his G-tube, I found myself asking God, “Why does he have Down syndrome?” Over time, I have learned how to manage the stress and anxiety I feel from these battles; now I refer to these days as “Down syndrome” days. Down syndrome is why he has so much trouble with liquids, why he has been so sensitive about the G-tube and his stoma. Coldon is incredibly driven, calm and resilient; it isn’t him causing these struggles. Jay likes to say “Coldon has Down syndrome, but the Down syndrome doesn’t have Coldon”
My initial feelings about Coldon’s diagnosis were and still are positive. There are days when I hate Down syndrome, because it changes who my little boy is. However, I have had a calm peace and sense of comfort about his diagnosis. This past year has been a blur and I have had very little time to think about Coldon having Down syndrome or a need to think about it. As a triplet mom, we tend to focus on keeping them fed, healthy and alive; can’t sweat the small stuff! Well, as the triplets are getting older, I’m slowly gaining time and as Coldon develops into a toddler, he is starting to exhibit behavioral characteristics of DS, so now I have the need to think about it.
Some of the first things I thought about when we received his diagnosis were about his future. Will he be able to have a girlfriend, get married? What about children, will he be able to have children one day? I’ve thought about these questions to the point of writing them down and doing some research. I started reading other peoples stories, and to answer my own questions, Coldon most likely will not be able to have children, but if it is God’s choice for him and if wants to have children, I will support him. I will support Coldon if and when he decides to date and I will support him if and when he marries. Surprisingly, the “what if” questions didn’t come to my mind until later; I was only worried Coldon wasn’t going to be able to have a girlfriend.
I believe the reason I have not been as affected by Coldon’s diagnosis, is I have chosen not to be. I don’t question God’s work. Through our ups and downs and my faith in him, I know why Coldon has Down syndrome. God has a purpose for us and Down syndrome is part of that purpose and I know God gave me Coldon, because he made me to be the one person in the world who could handle Coldon and his diagnosis.
Through this diagnosis, I found God’s purpose for me; something I’ve struggled with for years and it took triplets and Down syndrome to find the answer. I have always been a passionate person and constantly searching for something to “fight” for. Now I have an incredible platform to advocate for and an amazing and unique story to share.
My life has changed drastically in the past two years. If you would have asked me two years ago, where did I see myself in the future, I would have never dreamed I would be a stay at home mom, raising triplets and discovering a passion for Down syndrome advocacy. I have been blessed with the opportunity to sit on the board of a local Down syndrome organization in my community and through social media have connected with some amazing families in the DS community! My mission as a mom and an advocate is to support other moms. I am about one week away from launching my blog, Coldon’s Krewe, where I am able to have a resource for the information I’m ready to share.
Triplets are demanding; I’m tired and exhausted, both mentally and physically. Down syndrome can be difficult, scary and frustrating, but having triplets and DS has been the most rewarding and enriching life experience I could ever imagine and I am so thankful God chose me! Triplets and Down syndrome has changed my life in so many ways and I cannot wait to see what my future holds and what God’s plan has in store for my family!
Shawn is the mother of one-year-old triplets,
The Family calls Louisiana home and you can follow their journey on Instagram @downwithcoldonandhiskrewe and on their blog www.coldonskrewe.com
How to teach Sign Language to Children with Down Syndrome- one mother’s tips
One of the hallmarks of Down Syndrome is that children typically take a bit longer to learn speech and some other skills. However, our children’s needs don’t simply wait because they are not able to articulate them. It is for this reason that so many parents opt to start teaching their children sign language.
By teaching sign language to our children with Down Syndrome, we are affording them the means to communicate, before the skill of speech comes into play.
A Preemie So Small that Down Syndrome wasn’t Initially Detected
A Preemie So Small Down Syndrome Wasn’t Diagnosed
We’ve all heard of miracle babies, ones that defy all odds. Babies who are born so early that their life hangs in the balance hourly. Here is the story of one such babe, one who was a Preemie so small that Down syndrome was not diagnosed at first…
I never, ever thought it would be me. I thought it was my God-given right to give birth to a perfect baby with no medical complications, have him or her handed to me in the delivery room after going full term and then be able to take my baby home. Wrong on all three counts.
Theo’s undetected Down Syndrome would have killed him if it hadn’t been picked up literally in the nick of time. A standard appointment had alerted my midwife to a small bump and ultimately a baby who was on the verge of surviving inside me, unknown to all of us. Theo is a fighter, a survivor – I think we can all attest to our children being pretty amazing with the set of cards they are born with. We ponder over these unfamiliar cards, worry, perhaps glance at them too much where our mini humans cast them to one side and just get on with it. But my baby was days, if not hours away, from being brain-damaged or still born due to a limited flow in the umbilical cord.
Theo was born the size of a mobile phone with spindly legs and arms at 29 weeks. No one knew about his diagnosis then: he was just a preemie baby. When I say just, all of the NICU experience, with its bleeps, wires and tubes was ENOUGH for any mum. I should have still been pregnant, enjoying my swelling baby, getting everything ready. Instead, I faced a grueling reality of a vulnerable baby surviving day to day. Theo was too preemature for any doctor to detect Down Syndrome and he was lucky enough not to be born with a heart defect so three weeks went by whilst we all thought we had merely months to face any seriousness. Anything different.
One morning I was asked whether my partner, Andy, was coming in that day. No, I said he was at work. Well, I had better get him in as they had some ‘life-changing’ news to tell us about Theo which had come back from a blood test. That was the moment my life shifted its course for good. Never before had I felt the reins ripped out of my hands, slapped across my face then tugged into darkness. An hour later, with Andy by my side, we learned what Trisomy 21 meant.
The thing we all get tested for because nobody wants that, right? I was terrified of it. If it was such a concern for the NHS, where we are all recommended to get the test for this undesirable outcome, why would I not be in utter, utter despair that, yes, that is what my son was born with. That is why he had stopped growing inside, that is why he is there in an incubator. In fact, he was lucky to be there at all. I may have aborted my baby if I had known about his DS in utero. I don’t know: I was never in that situation. But if I had, I would have done this through fear, ignorance and outdated perceptions. My life has changed: it has so much more in it. Yes, that might be some unwanted challenges but my life has my darling son in it and for that I am forever grateful. I am now in a community that I never knew existed and it is so inspiring and positive. I have a sensitivity and a patience I never had before
I didn’t want him to have it, I didn’t want my precious newborn to have to deal with it, I didn’t want a special needs adult in my life in 20 years, I didn’t want to face something I didn’t know and had rarely seen. In fact, I had never ever met anyone with DS. (Now, I think that is part of the problem for expectant mothers – the lack of awareness, the lack of the pure, simple reality of living with DS which is why blogs like these are so important). I was devastated which I am sure was compounded by the stress – stress on another level – of having a preemie baby. My early weeks of taking that diagnosis in (which I am sure we can all remember as we see our new reality shift and morph in our hands) was spent with Theo in NICU which I think made it harder. I had to ask permission to hold him, have him handed to me and go through the anxiety every morning of the doctors’ rounds, thinking what else are you going to discover next?
NICU + a DS diagnosis = the worst time of my life. When it should have been the best. I felt utterly cheated and lost.
My initial fears – oh, they are still there but if only my present self and Theo, of course, could take my hand back then and lead me to a window where I could see the many, many hours of blissful motherhood, of discovering Theo and him discovering me. Of making each other laugh and of the endless cuddles. If only I could bottle those moments when my heart is full of a love I never knew could be present in a person. When we are faced with a diagnosis – that’s all we can see. It is hard to look beyond at what is simply in front of us: our baby. New life. New beginnings and the blessed opportunity to nurture a person in this world. I have of course fallen in love with my happy go lucky son, with every atom of his being.But at 17 months corrected where I am now definitely seeing a yawning delay, I do battle with my fear of his future. There’s a certain take-it-for-grantedness that I think I may have had if I had a typical child. I see it in other parents: yes, of course he or she is pointing. Walking? Oh, I can’t stop him/her. I would die to see Theo do that so easily. I know it will come but it breaks my heart a little that these things, and many, many more after them will come harder to my son. I do wish I could change that. Andy and I fear about his independence and whether he will find what we have. We met at a party in Amsterdam: standard. But our standard is not going to be Theo’s standard. That’s the bit I struggle with and will always, I suspect.
As for us as parents and partners, we are stronger – there is no doubt of that – but we know we will have challenges. Right now, we are loving being parents of a delightful, little boy. We are cutting our parenting teeth on Theo as he is shaping us into the parents we are as much as we are shaping him. In fact, he is pathing the way for his future siblings and they will (hopefully) be grateful to him as he has made us utterly grateful and, unbelievably, pretty chillled out. Theo is such an easy, little boy.
Andy is 13 years younger than me. I gave birth at 39 when Andy was 26. I think it was difficult for me to accept that it was my older eggs that had resulted in Theo’s diagnosis. Andy did not think like that all. He cried, of course. I always wondered if he felt trapped with an older woman and now a disabled baby but he never showed it. We were in this together and he displayed an emotional maturity of the like I could not have mustered at 26! We were shocked and we were very, very sad. I think feeling the weight of the diagnosis together tested our relationship, which was only a year and a half old at the time. But he is very practical and just got on with it. ‘We have each other’ I remember him saying. I remember thinking ‘but this is going to change things for us, it is going to be difficult, it won’t be what we wanted’. I wrangled over it – I still do – he put one foot in front of the other and took it day by day. To be fair, it is me who does a good deal of the child care and the hospital appointments – goodness, there are so many – where I sit, clenching everything with the fear of something else going wrong. But Andy is simply Daddy.
He doesn’t weep over the 15 year-old Theo we haven’t met yet. The young adult who I am frightened will be bullied , will be excluded from parties as he’s the special needs kid, the boy who might very well turn round and ask why him. Likewise, he doesn’t mull over the past or think about those early months. He is just here in the present. I asked him the other day if he could take Theo’s DS away from him, would he? He said he wouldn’t and I sighed a relief. Theo would not be Theo and his little burgeoning soul fills our lives with light.
Theo is 17 months corrected and a happy resident of North London. He attends nursery four days a week where he has becoming quite the artistClaire, Theo’s mum, is a trained actress and presenter and intends to use her skills in communication and public speaking to raise awareness of Down Syndrome and the joy Theo has brought to her and her partner’s lives. Follow along on Instagram @mumonadifferentpath
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