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This blog post is part of our “Down Syndrome stories from around the world” blog series. Click the link to learn how to submit your story!
1. What Country do you live in?
Tanzania, East Africa. We live right at the bottom of Mount Kilimanjaro!
2. How many children do you have and what are their ages?
- Skyler aged 5
- River aged 2, he has Down syndrome.
3. Do you have a website / Instagram / Facebook page?
4. What was your reaction when you found out your child had Down syndrome?
This is quite a difficult question for me to answer really, as even though I suspected from birth that River had Down syndrome he wasn’t diagnosed until 6 months old. I was told by many health professionals that he was fine, but I knew deep down that he had it. By the time he was diagnosed I guess I’d already gotten to know my son and just knew he was going to be ok. I already knew he was amazing, so we were incredibly positive and have been ever since. I had an afternoon of tears and then we went away on a family weekend and celebrated his life.
5. Tell us about the birth of your child with Down syndrome.
We traveled back to the UK for the birth as I just didn’t feel comfortable doing it here in Tanzania, due to lack of health provisions and a high rate of deaths for both babies and mothers in childbirth. It was safer for us both. We had all our scans and check-ups both in Tanzania and back home in the UK, we had no idea that River would be born with an extra chromosome.
We planned a home birth. I’d had a very straightforward hospital birth with my first born and immediately I had just wanted to go home, so this time I just wanted to not even leave the house. I spent weeks setting up a delivery room, it was perfect. And then River flew out on the living room floor and the midwife only just made it. I didn’t even make it up the stairs!!
River was born strong, the tell-tale signs of hypotonia were not there. He latched on the breast and there were no indications of Down syndrome at all. Four hours after he was born the midwives had left and we were starting our new lives as a family of four, completely unaware of how our lives were going to change.
6. What was the reaction of the Doctor when they told you your child had Down syndrome? What would you tell your OB/GYN if you had a chance to talk with them today?
We spent three months in the UK and in all that time River was not diagnosed. I suspected, I would look at photos and be so sure, but I clung to the fact that people were telling me he was fine. I was happy to hear that even though deep down I knew.
About a week after his birth our midwife visited, and I remember her looking concerned. I knew in that moment exactly what she saw and her words ‘he looks a bit funny’ (yes, I know!) confirmed it to me. She sent us to the hospital to be checked over, but the doctor took one look at him and told us there were no issues. They didn’t give him a blood test and just sent us on our way, I was still very unsure, but I was happy to accept what they wee telling me. River had midwife’s appointments, health visitor appointments, he failed four hearing tests and saw specialists, he had immunizations, he saw a breast-feeding specialist and he went for his 12-week doctor’s check-up. Not one persons suspected Down syndrome.
We returned to Tanzania and just started living our lives. River was amazing, and we were blissfully happy, but still deep down I knew although I kept it to myself.
He was behind in his milestones but not massively so and he was very healthy luckily. He was finally diagnosed at 6 months old and the doctor told us to just take him home and love him like we did with our first born. His heart was fine, and he had no health complications which we’re extremely thankful for living here.
7. What was the reaction of your family and friends when you told them your child had Down syndrome?
Shock as we didn’t find out until he was so old! They were fantastic though and he has always just been River to them. I think our own positivity and reaction to the diagnosis helped people see that there was nothing to be sad about.
8. What unique qualities do you love about your child?
River has so many incredible qualities, he is most definitely one of a kind. He has a determination like no other, at 2 years old he is running, jumping, feeding himself and riding a trike. I’ve learnt never to underestimate him as he proves me wrong every single time. He is full of mischief, it’s a part of his personality that makes us laugh every single day. He is feisty, clever, funny and with his personality I just know there are no limits to what he can achieve.
9. What sort of things does your child like to do?
River loves to draw and paint, and as we own a business in African art this couldn’t be more perfect! I definitely intend to nurture it as it’s important to me that River has a career. He is car mad, loves to ride his bike and play on the trampoline. He is actually very sporty which I never expected at all, but it taught me never to think he won’t be a certain way just because he has Down syndrome. He loves to cook and is always ‘helping’ in the kitchen and he also likes to eat, especially spicy food!
10. What does an average day look like for your child / your family?
To be honest it’s pretty ‘normal’, whatever that may be. I stay at home for now while River is young and in the morning, I spend time on doing therapy based things, although it’s always fun. We work on fine motor skills, singing, books, art, exercise, speech etc. In the afternoons we usually just hang out in the garden or play with toys. Reagan works very long hours running our business and Skyler goes to school. Our work is seasonal so although Reagan works a lot during those times, at low season we get to travel a lot as a family which we love. River is quite the explorer!!!
11. Is there support in your area for families raising a child with Down syndrome? If so, what kinds?
Nothing, absolutely nothing at all. I’m so thankful for the online community I have found because I have nothing here, I don’t even have any family close. I don’t have friends with young children with Ds, River knows no other children with Ds, there are no support groups, no specialists, no therapies and doctors do not even have knowledge on Down syndrome. There is a huge stigma within society and Down syndrome is often linked with witchcraft or a punishment from God. I know of a man with Down syndrome who was locked in a room for over 30 years by his family through shame and unfortunately, it’s not uncommon. Babies are abandoned or even killed, and I’ve heard of nurses refusing to touch new-borns from fear. Down syndrome does not even have a name here and is rarely diagnosed.
As awful as it sounds, I genuinely believe River living here will make a difference. He is very much accepted and loved, and if others see him living a great life with a family who adore him, then it may just help future babies who will be born with Down syndrome. We have faced no negativity at all, in fact it’s impossible for anyone to not just fall in love with our son.
12. Are their therapies available for a person with Down syndrome in your country, if so, what services are available? Tell us about what therapy looks like for your child.
River has never had any therapy, but believe it or not he is thriving. We saw a physio therapist on a recent visit to the UK and she was amazed that he had had no therapy and said that he is developing perfectly. It is so good to hear when you worry every day that your son is not getting the help he needs! He has never had speech therapy but has about 20 clear words, I think he is going to be a real chatter box in the future although of course, we can’t be certain how his speech will progress. His brother also had a big speech delay so I’m a bit of a pro there and will deal with whatever we need to deal with in that area.
I use YouTube for physio videos and speech therapy videos and I do it all myself. I read everything available and make sure that I am collecting resources to provide him with what he needs. It’s a huge responsibility for me but if I don’t do it then it just won’t get done. I often wonder about whether I am up to the job and can give River what he needs and deserves, but unfortunately, the services just don’t exist here, and I can only do what I can.
13. What does education look like for a person with Down syndrome in your country?
There are no laws in place to ensure that people with learning disabilities are entitled to an education, and it’s rare to see someone with Down syndrome in school.
River however will attend the same international school that his brother goes to and will be very welcome. They have no experience or specialist knowledge, so I am currently doing online courses and learning as much as I can about special needs education and the importance of inclusion. The school wants to learn though and to me that is the biggest battle of all, everything else can be worked out.
14. What is the best thing about raising a child with Down syndrome in your country?
I’ve probably painted a pretty bleak image of what it’s like to raise a child with Down syndrome here in Tanzania, and for many families it really is. But River has a wonderful life here because I have educated myself and know what he needs, hopefully, one-day others in Tanzania will also. Another big factor in my choice to raise him here is the fact that he is extremely healthy and needs no medical treatments other than a yearly check-up.
So yes, for us life here is great. River gets much more freedom, he has a huge garden to explore and life is just less busy. We get to travel, go on safari and nature really is so wonderful for children growing up. I genuinely believe the best place for River is right here in Tanzania and in the future, I hope his life will help change life here for others who also have Down syndrome and their families.
15. What is something you would like to change about raising a child with Down syndrome in your country?
So many things! As River grows up I would love to find a way to educate people as there are so many that need to learn. Health professionals is the main one, even doctors here no knowledge about Down syndrome and health issues associated with it. We must travel to a private hospital in Nairobi for Rivers check ups as we feel so much safer doing so. Hospitals here just have no idea how to deal with the birth of a baby with Down syndrome or the care that is needed throughout their lives.
Teachers need educating on the possibilities and realities of people with learning disabilities being able to get an education. Even the government needs educating on the fact that people with learning disabilities deserve the same rights and any other human being as right now they have none.
And society needs educating, families need to understand that their children can still live meaningful lives and deserve to be treated with respect and love. It’s all about education and I believe things can and will eventually change. There are a few organizations trying to make a change and it’s great to see things taking a step forward, but this is few and far between right now and I hope this will change.
For now, I just hope that families look at River and see a happy, capable and brilliant little boy, who his loved by his family and is thriving in his development. I hope that when they see River they will understand that the same is possible for their own children or children they may know within their own communities. I hope River shows people possibilities and gives them hope!
Thanks for sharing River’s story with us (and the world!) To all of our readers, be sure to leave a comment and say hello to River! Would you like to tell your story? Click here to learn more about our “Down Syndrome Stories from Around the World” blog series!
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