Down’s Syndrome (DS) is a genetic disorder that is caused by an error in cell division that leads to a full or partial extra copy of a Chromosome21. Most people have 23 pairs of chromosomes in their cells, one chromosome from each pairis inherited from each parent. But in people with Down’s Syndrome, abnormal cell division involving chromosome 21 occurs, resulting in an extra copy of this chromosome that alters the course of their developmental growth. The most common traits of individuals with DS include intellectual and developmental delays that varies from mild to severe.
World Down’s Syndrome Day (WDSD) is celebrated on the 21st day of March every year to raise awareness on DS, because March is the third month of the year and it signifies the uniqueness of the triplication(trisomy) of the 21stchromosome. Connect is the theme for 2021 WDSD that signifies the best way to promote awareness about this disorder and we connected with families with individuals having Down’s syndrome and learned more about how to cope up and manage DS in their own words through 21 questionsabout chromosome 21 on 21stMarch.
1.How did you find out your baby had down syndrome?
We found out that our baby would have down syndrome at our 20-week anatomy scan. During a time when many people find out if they’re having a boy or a girl, we found out a lot more. It was at the height of the pandemic and I was alone in the appointment. My mind went completely blank and I was terrified as a room of masked and shielded strangers rattled off the scary facts that they had found during our ultrasound.
It started off being a very dark journey but there is light now andfull of possibilities. Owen is teaching us that there is more to life than textbook definitions and stereotypes and that any human being can shatter glass ceilings as long as we let them live to their fullest potential.
I looked into early intervention programs, found support groups, and read books to find more about Down Syndrome.
There is no cure for Down Syndrome, nor should there be. They are beautiful just the way they are.
I don’t think there is a golden recipe for being a parent, especially of a child with a disability. I found out that Pola would have a Trisomy 21 only after she was born. In addition to Trisomy 21, she had a heart defect and bilateral pneumonia. If I had known sooner, would it have changed? I think not! Perhaps only that I would be better prepared for living with a child who has special needs.
In 2017, my adventure of being the mother of this wonderful girl began, who showed me what is most important in life. She showed me that there are no barriers that man cannot overcome.
Everything is not always easy. Sometimes there are days full of rehabilitation, extracurricular activities, or consultations with specialists. The question that often arises is whether I will be able to provide my daughter with the best possible conditions for her to thrive? Am I doing my best to ensure a sufficient future for her? Will she be independent enough to function in this world when I’m gone?
There are days when tears of tiredness and helplessness appear. Some questions will remain unanswered. But that’s what life is. Probably every parent has such doubts. Regardless of whether his child is disabled or healthy. I know one thing! Thanks to my daughter, I know she is alive. She is my greatest challenge and reward for my life.
6.How to support a friend who just got a diagnosis of DS for their child?
First things first, congratulate your friend as every life is worth celebrating. Do not say ‘I’m sorry’ or ‘what bad news’ or ‘I feel for you’ or ‘God only gives special needs children to special parents.’How about, tell them you are proud of them, tell them how beautiful their baby is, ask them how are they handling the diagnosis?
Do they want to talk about it? Be supportive let them know you are there if they need to talk.
Fear of non-acceptance is natural. But I was lucky. At his birth, my mother-in-law was our biggest strength and supporter. All the fear, worries were on her head. I was not aware of the term “Down’s syndrome” and nor its limitations. By the time I came to know about all this, I was somewhere prepared to take my journey with faith, that whatever he may be capable of doing, I’ll give my best to him.
Challengeswere always there, whether in achieving his early milestones like neck holding, speech, standing, walking, or to find a good therapist and to find playschool. Yes, we also faced rejections for admission in playschool and regular school. At first stance, it was disturbing but with time these rejections make us stronger. And if you have a good support system with you, things become easy and nothing can stop you to work for your child. We found the school but still, I must say, schools really need to be more sensitive and improve their infrastructures to nurture the kids with special needs.
It is very important. As I already mentioned, my family gave me all the possible support that was possible. It is easy to find success if you have a support system otherwise, it becomes quite tricky. If I was with him for his therapies or classes, I did not have to worry about my home. There was and there will always be my mother-in-law to look after everything. Today whatever he has achieved or capable, the credit goes to each and everyone’s efforts.
Early Intervention for children with Down’s syndrome is so important in giving our children the best shot at life! Saajan began physiotherapy from the age of 4 months. He began speech and language therapy from 8 months. We are fortunate that the NHS provides such therapies but additionally we received invaluable support from a local charity called Sparkles. Not only was it supportive for Saajan’s development, but it was also an emotional and mental support for my husband and myself. Physiotherapy helped Saajan reach physical milestones while speech and language therapy equipped Saajan with sign language for him to be able to communicate till he developed speech. Children with Down’s syndrome learn everything eventually but there is a developmental delay and additional therapies can aid in reaching those milestones.
I feared that Saajan’s needs would not be met once he started in a school setting, also that he would not develop friendships as he is behind his peers in some ways. I trusted my intuition when visiting schools and also when speaking with teachers and childcare providers. I also let Saajan guide me – he automatically gravitated towards who he was most comfortable with. I ensured I wrote down as much information as possible for the school, we have frequent communication via meetings and a daily communication book.
My personal preconceptions before having a child with DS, was that their life would be a struggle. I thought as a family we would be avoided, because people would feel awkward around a disabled child… Actually, my daughter was a calm, happy, easy baby. She didn’t hit milestones as quickly as other babies, but she was content and a joy to be around – no one avoided us. As she got older, it was clear she’s a gentle, social child and she’s a popular girl, so people have been surprisingly open. If anything, people actively want to say hi to her. I also worried about the opportunities in her future, but now I feel confident she has a lot to offer to our society and will do well on whatever she chooses to do.
12. How difficult it was to make the other sibling understand the situation about DS child? What strategies you came up with to build the sibling bond. What advice would you like to give to the parents of multiple kids who just had a new born with Down syndrome?
Having our child with DS first, meant that when our son was born, this was the big sister he had always known – he didn’t see her as different. We didn’t mention her having DS until very recently. They bonded naturally like any other siblings, there were no strategies needed. They have shared a room since he was 18 months old and she was 4 years old.
I think my advice would be initially to not do anything different. If you have older children and it needs to be discussed, then of course be open about it. At age 5 and 7 and a half, it’s clear to my son that his sister is a little “different” – she can’t run as fast as him or climb trees. She gets upset when other kids are being rowdy. She can be very stubborn. But, she’s also a better eater than her brother and she’s more flexible than any of us! And an amazing dancer! We talk about how everyone is good at somethings and not so great at others. We have said that DS can make it harder for her to learn and that physically she’s not as strong and they are both very accepting.
Support groups are very helpful and valuable as they help you to feel less alone and less scared, as well as information they can help you with their own personal experiences later down the road.
Being that the twins were my 4thand 5th children, I wasn’t worried so much of how different they would be as much as I mourned the loss of experiencing “twin life”. Knowing that August would experience delays, I thought his brother would surpass him extremely and rapidly and leave him behind completely. Never be able to see the equal. Although being in different milestones is still the case, August doesn’t fall far behind. In fact, many parents of typical/Ds twins would say, it helped manage two babies at once. Currently, I don’t have two one year old learning to walk but I have one crawling and one walking. It still busy, but enough to give me time to react to one before the other one
In my situation, I was already aware and use to having kids reach milestones differently. It wasn’t hard to not compare them, but somethings did make me feel sad, like when his brother started laughing and connecting with us, and it felt like August had no clue who I was. That made It hard to connect with him early on. Other times it actually helps me having a twin, instead of trying to remember or research what physical level he should be at, I am able to gauge it by his brother so I work on those things to get him going. For example, currently, his brother goes up and down the stairs, we started going up and now I’m working on him going down.
There is nothing that I could really change about my early childhood with Scott. He was raised in a warm and very loving environment at home. We had a very special bonding. My first friends, were my brother’s friends who went to a special preschool with him. They were all disabled and I had lots of fun playing with them. Looking back, I gained my most valuable asset, the compassion, from these beautiful children. These wonderful humans were loyal and loving and stood for all that is wonderful in this world. They taught me love, friendship and loyalty.
My first 3 years of school were very lonely for me, as nobody would come near me in the school yard to play. I imagine the other children’s parents had probably told their children not to play with me because my brother ‘was special’. Yes, I know that it’s hard to believe, but it was unfortunately the ignorance of that era, people were quite different in their beliefs during 1970’s. It has taken many years for people with Downs Syndrome to be accepted in the world. It makes me happy when I see them being smiled at, rather than stared at, by people in the community.
This month, on March 21 it is World Down Syndrome Day. Many people will celebrate by wearing silly socks and posting them on social media to raise awareness. There are several children’s books being published now, that show children with Down syndrome living with peers. I myself will be publishing one in the summer.
In the USA, most cities have Down syndrome organizations and they host fund raisers such as races or walks around the town and businesses usually sponsor it so money is used for programs that help children with Down syndrome to improve their skills, such as speech therapy, swimming, art, or social skills.
October is Down syndrome awareness month, so one way to involve people is to ask them to wear blue t-shirts to work or school or challenge them to learn new facts about Down syndrome, one a day for the whole month. Education usually helps reduce fear so the more people know, the less they stereotype.
I would encourage people to treat people with Down syndrome with the same respect they give people who don’t have Down syndrome. They are intelligent, kind, funny, brave, and in many ways, the same as anyone else
That they can be seen as a child first, and their diagnosis second.
It’s a tricky thing to ask for understanding & patience and yet to be treated equally and to be given the same opportunities as their peers.
I watch Toby and how he always seems to ‘get there’ – communicate, keep up, etc, and to think children like him were institutionalized, ignored, and disregarded (and in some cases still are) it’s heart breaking. What a waste of a beautiful life.
a) Reach out to parents who have kids with DS. You will quickly realize that every child, (additional needs or not) learns at their own pace, that every kid with DS is impacted differently. Additionally, the community is amazing and I’ve never seen a mother’s grouplike that.
b) Allow yourself to feel what you need to. Work through it. Then get on with the love.
c) This diagnosis that can sound/be all-consuming, is just a part of them, but it isn’t them- I look at Toby and can’t imagine another version of him in our family. He fits. He’s where he should be, as he should be.
d) Trust that momma intuition- if a doctor, therapist, or teacher isn’t sitting well with you. Go find someone who is excited to be on your child’s Team who will work with you and them.
e) You’re a parent. Congratulations. Slow down or make time to enjoy discovering the world through your child’s eyes. Be consistent. Celebrate the wins. Be calm and educating to ignorance. Ask for help. Ask questions. It’ll be a love like no other.