Ange Longbottom

@ange-longbottom | contributor
Ange Longbottom is stay-at-home mom with two kids. Her daughter loves dinosaurs and superheroes, and her son is a real life superhero who has changed her family’s life in the best way with his extra chromosome. Follow her family’s journey on About Ash.

Ways to Describe Loving a Child With Down Syndrome

By textbook definition, Down syndrome is described as a chromosomal condition resulting in three copies of chromosome number 21. The extra chromosome causes intellectual disability to varying degrees and a list of potential health problems. What a textbook can’t tell you is the potential and personality of your own child and what they may do. Your child’s roadmap of life will be uniquely created by themselves and the friends and family who lovingly support, guide and believe in them. If you set the textbook aside and look beyond the clinical, bleak picture sometimes painted by medical professionals, you will find a different definition, one written by  your real life experience and the infinite love you have for your child. I chose to put the textbook aside not long after finding out the baby boy I was carrying had a surprise in stall for us, something extra we were not expecting. Sure, I did a lot of reading, but I reached a point where it became overwhelming. All the “maybes” and “what ifs” started to consume me, so I put the books down for a while and decided to enjoy my baby and learn about his own personality. I chose to do things day by day. So how can loving a child with Down syndrome be described? Here are my 55 ways… 1. It is an unexpected diagnosis that challenges you to look inside yourself and believe that despite your fear, everything will be OK. 2. It is almond-shaped eyes that dazzle you with their beauty. 3. It is meeting other parents who take you under their wing and fill you with hope. 4. It is your child’s unwavering love for you, even when you doubt yourself. 5. It is low muscle tone that may bring walking later and the best cuddles. 6. It is sibling bonds that come into fruition like you had hoped. 7. It is learning your own language with your nonverbal child. 8. It is worry for the future kept in check to cherish the now. 9. It is learning not to compare your child with others. 10. It is the celebration that comes with every milestone. 11. It is the courage you build to advocate for your child. 12. It is a smile that is surely the most beautiful in the world. 13. It is the therapists and teachers who support you and see the potential in your child. 14. It is grandparents who dote and boast about their grandchild. 15. It is sloppy kisses so lovingly planted on your cheek. 16. It is learning who will stand by your side in good and bad times. 17. It is struggling with a diagnosis and feeling alone. 18. It is reaching out for support and realizing you are not alone. 19. It is being part of a unified, proud community of parents. 20. It is a weaker immune system and periods of illness that make you fret. 21. It is stares from strangers in public. 22. It is smiles and love from strangers in public. 23. It is asking for help despite your pride. 24. It is having high expectations and no limitations. 25. It is repetition of activities and the relief that comes when your child nails it. 26. It is learning how to support your child’s health. 27. It is little hands that learn sign language. 28. It is hearing first words you secretly felt may never come. 29. It is the pain in your chest when someone underestimates your child. 30. It is realizing your child is in fact your teacher. 31. It is the friends you can lean on when you are thrown a curveball. 32. It is the online community of parents who you may never meet in person but who are part of your circle of support and knowledge every single day. 33. It is learning how ignorant and uneducated you were before you loved someone with Down syndrome. 34. It is your amazement when your child crawls, sits, walks for the first time. 35. It is believing good days will come after bad ones. 36. It is your desire for others to see the worth of your child’s life. 37. It is adapting as a family. 38. It is a learned appreciation of the little things that matter. 39. It is coming home after being in hospital. 40. It is not coming home from hospital. 41. It is the worry that comes with schooling and the relief you feel when you find the right fit. 42. It is how much you would like to adopt every child with Down syndrome who has been abandoned because of their diagnosis. 43. It is tears in private when you are completely overwhelmed. 44. It is friends who listen and understand. 45. It is your child’s unwavering ability to overcome obstacles. 46. It is your desire for an even playing field for your child. 47. It is not judging another parent’s decisions. 48. It is sharing your knowledge with a new parent. 49. It is trusting your own intuition. 50. It is hope, love, joy, faith, belief and beauty. 51. It is moments of sadness, grief and anger. 52. It is different for everybody at any given time. 53. It is celebrating and supporting each other. 54. It is pride and hope we hold in our hearts for our children’s future. 55. It is what we hold in our hearts every day. This is what loving a child with Down syndrome means to me. Follow this journey on About Ash. Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today! Available for purchase on Amazon and iTunes .

What to Know About a Down Syndrome Diagnosis

Has your baby just been diagnosed with Down syndrome? First of all, congratulations on your pregnancy or the birth of your beautiful baby. I’m also a parent of a child with Down syndrome, and here are 21 things I would like you to know: 1. You may be feeling shocked, scared and alone. It’s OK, so did we. It will pass. What you may be feeling now is transient. Your life has changed for the better, you just don’t know it yet. 2. Your baby may be more like you than different. 3. There is no “one size fits all” with Down syndrome. Your baby will be unique, beautiful and very much their own person, just like you. 4. Your doctor may present a negative view about Down syndrome and paint a bleak picture. I promise you that life with a child with Down syndrome is not bleak. Far from it. It’s bright. Very, very bright. 5. You might think the other children in your family will be impacted in a negative way, but they will love and accept their sibling and may be changed in ways that will make you burst at the seams with pride. 6. You might have to look within yourself and be open to transformation, because your baby might transform you and open your eyes to a new world. 7. Your baby may have some health issues associated with having Down syndrome. I know it can sound scary, but medical treatment is excellent these days. Your baby may have no issues, but you will have help at hand either way. 8. Your baby might take longer to reach milestones, but they’ll teach you patience, appreciation and courage along the way. 9. You might become part of a community of other parents and therapists who will be an extension to your family. They can support you, celebrate with you and grieve with you. They will be with you always. 10. Your marriage or partnership could become stronger. You will grow together and be challenged. You will bond over the baby you have made together. You must be strong and you will be. 11. Your baby will amaze you each and every day. Trust me. 12. Be proud when announcing the birth of your baby. Friends and relatives will hopefully take your lead. There might be negative comments that will sting and hurt, but hold your head high and don’t let anyone steal your joy. 13. You may have to reach out for support when you feel overwhelmed. Take one day at a time and enjoy your baby. 14. Don’t look too far into the future. It may seem like too much to think about, so just focus on the now. 15. I believe there’s never been a better time to be born with Down syndrome. 16. Your baby will grow into a child who will go to school and may excel with support in place. 17. You might look at other kids with Down syndrome with the same wonderment as your own child because you know how hard they have worked to achieve their milestones. 18. You may look back at the time you found out your baby had Down syndrome and wonder why you were so sad. 19. You never have to be afraid to stand up to a medical professional who may have a poor bedside manner — ever. 20. Remember that “comparison is the thief of joy.” You might get caught up in comparison, so trust your child’s own journey. 21. You can do this. I believe in you and need you to believe me, too. Your baby with Down syndrome may be the best thing to happen to you. Have faith, dream big and love your new life. Follow this journey on About Ash. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

When I Called Out My Mom for Not Using Person-First Language

As a parent of a child with special needs, I feel it’s our quest to promote acceptance, inclusion, person-first language and so on, but how do we do this without alienating ourselves? How do we educate those around us to understand why certain language and comments can offend us without pushing them away and making them afraid to approach us again through fear of saying the wrong thing? I have been thinking about this a lot lately. My personal approach is laid-back and easygoing. If a person’s intention and heart is in the right place, I won’t jump down their throat if they say the wrong thing. But it’s different if they use the R-word. It’s the only word that will fire me up because it’s plain awful and derogatory toward our kids. At the same time, if we stay silent, how can we shift attitudes and help our wider community learn how to respectfully approach and talk to and about a child with a disability? I believe it must be approached with patience and a gentle nature. What you radiate is what you often receive back (it’s also known as karma). If you’re kind, warm and open, people will feel at ease talking with you. If you’re aggressive or critical to someone trying to talk to you, chances are they’ll do the same back or retreat and not approach you again. I failed miserably at this yesterday with my own mother! I called her out for not using person-first language. She was telling me about meeting a “Down syndrome man” and his carer at the supermarket. I cut her off and said “a man with Down syndrome, Mom!” She was quite rightfully taken back, and I realized I had done the wrong thing by being abrupt and ruined what should have been a meaningful conversation about the happy exchange she had. It really didn’t matter that she had said “a Down syndrome man” because she was coming from a place of love and acceptance. She does, after all, have a grandson with Down syndrome! How could I have handled this better? By listening to her story without cutting her off and correcting her (I’d just like to add that I was horrendously sleep-deprived, too). I should have waited and gently said to her later why person-first language is important to me and what it means to put a person before their diagnosis. Or I could have let it go. To family, friends or the stranger in the supermarket, how can you approach a special needs parent or person with a disability without feeling like you may say the wrong thing? Be kind, warm and open. Please don’t make assumptions that our life is sad; no pity, please. Empathy is different and quite welcome. Please don’t stop asking questions. We need you to be patient with us as well. Some days we’re overly protective and sensitive. We’re facing challenges that are hard at times, and if you catch us on one of those days, we might appear closed off and distant, but deep down your interaction and interest in our family mean the world to us. Every kind word and bit of encouragement can change our day. Some of my most meaningful exchanges with strangers don’t involve words, they involve smiles. When someone looks at our son and smiles one of those big, warm, loving smiles, it speaks volumes. The pendulum swings both ways. We must give each other a break and practice being kind and gentle. Kindness can be mistaken for weakness in this world, but I believe being kind wins — always. It’s more important to be kind than it is to be right all the time. After all, it’s lonely up on that high horse. Follow this journey on About Ash. The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines. Photo credit: Golden Moments Photography

The Questions Asked About My Daughter Because My Son Has Down Syndrome

Soon after our daughter was born, I had several encounters with medical staffers who asked me whether she is “OK” or “normal,” since her brother has Down syndrome. Here’s what I want you to know: Normal doesn’t exist. The word itself is like scraping fingernails down a chalkboard to me. The fact that our daughter has 46 chromosomes and her brother has 47 doesn’t define her as “normal.” While my son’s extra chromosome means he has been given a diagnosis of Down syndrome, it doesn’t define him as “abnormal.” That extra chromosome means he has an intellectual disability and some medical issues. He has challenges that differ from his sister, but he is “OK,” too. Similar questions reared their curious heads during my pregnancy with our daughter. Questions like, “Do you know if this baby has any dramas?” and “Have you had the test to make sure this one doesn’t have Down syndrome, too?” Now let’s be clear, I welcome questions with an open mind and heart, and I see it as an opportunity to educate, but these questions hurt — deeply. It was like having a “normal” baby after having one with Down syndrome was a consolation prize. A “perfect baby” after an “imperfect baby.” The truth is, we welcomed each of our babies into the world with unconditional love and acceptance. The most important part was that they arrived safely and into our arms. The rest could be navigated later. I understand people’s sentiment and reasoning for having asked me these questions. In their eyes, they saw us having a child with a disability as a sadness, a struggle and a burden. I want you to know our son is not a burden nor has he brought sadness. The struggle part? Sure, we struggle with our son’s medical issues that are associated with Down syndrome. He gets sick a lot and misses preschool, which he loves, due to a weaker immune system. We struggled with his open-heart surgery at 4 weeks old, and we struggle with his mobility issues and nonverbal communication. But we also struggle with our typically developing daughter. Let’s be real: Parenting is a struggle. We’re all winging it! We just have different challenges with each little person. Here’s the thing, folks: Each and everyone of us has different abilities, strengths and unique quirks. It’s what makes us interesting, different and beautiful. Some of us need more help in this life and that’s OK. So in hindsight, how would I now respond to those medical staffers who asked if my daughter OK? Yes, she’s OK, but not because she has one less chromosome than her brother. It’s because she is blooming as part of a special needs family. She is loved and is encouraged to be herself and to value kindness and empathy. She’s happy that her brother is exactly who he is. She helps put his hip brace on or reminds him not to pull out his hearing aids. So long as her brother is included in the game she is playing, she is OK. She’s OK and her brother having Down syndrome is OK, too. Follow this journey on About Ash. The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines.