Category: Down’s Syndrome Awareness

I remember when Saajan was first born – aside from the shock of his diagnosis, my mind was flooded with deep dark fears. Fears that alone terrified me in to a further state of shock as I began to believe they’d unfold as my reality. Fears that I couldn’t rationalise with. I was terrified of rejection, of loss, of the unknown. Would we ever travel? Would my marriage even last? How would this impact Arjun!?

Hayley’s Facebook page, I am River, was like a look in in to our future – like us, they have an older son, Skyler, who has a younger brother, River who happens to have Down Syndrome. I felt comforted in seeing Skyler interact with River like regular brothers!

Like us, they love to travel – except a safari is a stone’s throw from their home in beautiful Tanzania! I love watching River grow and develop without the intense pressure of multiple therapies as frequently as we have here – don’t get me wrong, I’m super grateful, BUT, there is something so beautiful about receiving therapy through nature!

Below, Hayley shares her story and what Down Syndrome DIDN’T bring to their family.

When you first learn that your child has Down syndrome, you automatically look to the future and what it holds for you and your family. The hopes and dreams you had for your child’s life feel like a thing of the past, and your visions of school, university, career, marriage and grandchildren wither away. They can’t happen now can they? You are overloaded with terrifying medical information, the unwanted opinions of others who have no experience with Down syndrome, and you can’t help but invasion the outdated vision of the condition that society has led us to believe is true. The worst thing you will do is search Google, but you will do it anyway.

You are scared. You are uneducated. Your child is yet to prove you wrong.

You will have so many questions, and you will imagine the worst possible answers for every single one of them. Will my baby be healthy? Will my child be able to live a happy life? Will my child have friends? Will my child be able to learn or understand? Will my other children be negatively affected? What does this mean for my marriage?

Time will absolutely dilute these fears, and your child will teach you everyday that your fears were unfounded. They will show you just how amazing they are and you will feel guilty for ever having doubted them in the first place! But those early days are hard. During those times, and even for periods as they grow up, the worrying and fears can take you to a dark place. Every parent worries, for those who have been told that everything they envisioned for their life has changed, it’s a whole other level.

I wanted to take some time to tell you what Down syndrome has meant for our family, and what it HASN’T brought to our lives. It hasn’t brought many negative things that people may expect it to, and I’m sure there are many people out there who may be surprised with all the positives it has brought.

My son is breaking down barriers, squashing those myths and surprising me every single day. Eyes are opening!

Down syndrome hasn’t lowered my expectations.

I have expectations of both of my children, my eldest and my youngest who has Down syndrome. I expect them both to be kind, I expect them both to be respectful and I expect them both to be helpers. I expect both of my sons to work hard at whatever they choose to do in life, I expect them both to find something they are passionate about and I expect them both to challenge themselves and take risks. I expect them both to reach their full potential in school and I expect them both to be successful at something. It doesn’t matter what, I don’t care what it is, but just something. I expect them both to follow their dreams and to be proud of who they are, I expect them both to be humble and I expect them both to always accept others no matter what their differences may be.

I expect both of my sons to be happy.

My expectations have changed since having River, in the sense that now they are so much higher! I guess I was guilty of wanting the ‘norm’ before he was born, as in university, career, marriage, kids etc. Now I understand that being a good person and being the best version ourselves is what’s really important. River may have Down syndrome, but I still expect him to be the best that he can be.

Down syndrome hasn’t created unhappy siblings

My eldest son Skyler could not be a better brother to River, he adores him. I always say he was just for with a gentle soul and he hasn’t got an ounce of nastiness in him. He really is just a wonderful brother and I feel incredibly lucky that he’s mine.

Now do I feel that he’s missing out on anything? Absolutely not! We are a family, we look out for each other and support each other always. That’s what families do.

Skyler has known about River having Down syndrome since the beginning, in fact he was there when the doctor confirmed it. It never once crossed my mind to not tell him, it was never something that we were worried about discussing with him or thought he couldn’t handle. I didn’t want him to see it as a big deal, and he hasn’t, ever. He is growing up to be a kind, thoughtful and excepting boy and I just know he is going to be an incredible adult.

Skyler is one of the happiest and fun loving kids I know, he just loves life. Do I worry about the responsibility he may have as an adult regarding River? Of course I do. But at the same time, I just know he will always be there for him, that’s what brothers do. Both of my children are loved and happy, and they will both benefit from having each other.

Down syndrome hasn’t caused marriage troubles

Me and my husband have always been tight, but since having River we are unbreakable. I just feel that our family unit is strong, and anything that we ever have to face in the future will be done together. It’s as if River has shown us how to really appreciate each other and be thankful for the small things, he shows us what is really important.

Its often assumed that having a child with Down syndrome will be a huge strain on a marriage, and that many end in divorce. The reality is actually the opposite, and most family units become stronger and the divorce rate is significantly lower.

I’ve never resented Reagan, or him me for the things we have faced with a disabled son and it’s never come even close to ripping us apart. Its so important to talk about you fears, and to be honest and understanding. If you can manage that, then your child will be your greatest teacher and teach you all the other lessons you’ll ever need.

There will be marriages that fall apart, but the truth is that it probably wasn’t Down syndrome that caused it and they would have broken down anyway at some point. I know a lot of couples going strong and loving theirs lives together, and with their children.

Down syndrome hasn’t halted our love of travel

We travel all the time! River is 3 years old and he’s already travelled all over the UK, Tanzania, Kenya, Dubai and Amsterdam. He’s been flying long haul since he was just weeks old and loves a good holiday. I see a future of travel and seeing the world for my children, and Down syndrome will not stop River from learning about the many places earth has to offer.

Additional needs do not have to mean you can’t travel, it may need extra planning and research but you can totally be a travelling family.

Down syndrome hasn’t created strained friendships

A lot of friendships can break down when you have a child with Down syndrome, and it can be for various reasons. Firstly, friends just might not know what to say and be scared of offending you. Also, parents to newly diagnosed children may keep a distance, they may feel a sadness when faced with the typically developing children of their friends and just need time to process things. Or to be blunt, they may just not have been the great friends you thought they were in the first place.

I don’t have any ‘special needs mum’ friends. None. I find that hard at times, but we live overseas and I just don’t know anyone with a family like mine. River also has no friends with Down syndrome, another thing that makes me sad.

But what we do have are friends that couldn’t care less that we are ‘different’, that my child is ‘different’ to theirs. I’ve never once been made to feel comfortable or that I can’t talk about my sons progress, and at the same time I have never felt any jealousy or hurt watching their children develop in a typical way. That’s honestly the truth. Every parent deserves to brag about their children and celebrate their achievements, and I would hate to think that a friend thought they couldn’t care things with me because of River. I’ve always made a conscious effort to answer all quietens and never be offended when people mean well.

Treasure your friendships. Being a parent to a child with additional needs can be lonely and at times frightening, you needs you friends.

Down syndrome hasn’t made me sad at the delayed milestones

Up until River turned 1, he was pretty much achieving his milestones at a typical time. On the slower end, but he wasn’t significantly delayed. And then he was. After his first birthday everything slowed down and his milestones were not hit at the same time as his peers. He crawled at 1, but didn’t walk until he was 2.5. And at 3 years old now he is developmentally way behind his peers.

But him having Down syndrome gave me the ability to throw away the milestones charts, it just wasn’t important to me. There is so much pressure on parents today in regards to their babies achievements, and to not be part of that was such a relief! My son could develop at his own pace and we were just able to enjoy those moments. They are so exciting as he works so hard to get there! I know River will achieve everything he sets out to, with his determination there is no chance of him failing. We just have to wait a little longer and that is totally fine with me.

Down syndrome hasn’t made us weak

I have a fire in my belly since River was born, he just seemed to ignite a spark in me to do whatever it takes to make his life a little easier. As a family we are confident, outgoing and love an adventure and having a child with Down syndrome has not changed that. Actually, it has made us all the more determined to enjoy life and prove to others that we are not burdened. We are hugely lucky!

And as a mother I am stronger than I have ever been, and I will fight for my children for as long as I am able.

Obviously having a child with additional needs comes with worries, I would never make light of that. There are medical issues that are associated with Down syndrome and I often worry about what will happen when I am no longer here. The fact of the matter is that nobody knows what the future holds, I can’t tell you for certain what life holds for either of my children and neither can you. Any of us, and any of our children can become disabled at anytime, and any of our lives can change at any point. Do we live in fear of that? Do we spend our whole time worrying about what may or may not happen? Or do grab hold of life, show our children to be exactly who they are meant to be, and live the life we were given with as much happiness as we can.

Down syndrome may come with struggles and it may make life harder at times, but challenges do not have to equate to unhappiness. It certainly hasn’t for our family and hundreds of other families out there who find themselves in our position. If you feel sorry for families like mine, or if you feel sorry for people with Down syndrome then stop, because your pity is wasted. Pay attention, look and learn, and you will see that we are doing just fine as we are and wouldn’t change a thing.

For World Down Syndrome Day 2018, I’ll be sharing 21 different stories to raise awareness! If you loved this story, you may love the others, you can find them here.

I must have stumbled upon Felicity’s mummy’s instagram account pretty soon after we had Saajan. Accounts like these really helped to calm my nerves. Felicity is a a year older than Saajan and boy is she enjoying life! Her beautiful face combined with her sassy personality make her so endearing! One of my most favourite things about Felicity is her dance moves – I could watch her for days!

Below, Felicity’s daddy has shared their birth diagnosis from a father’s perspective.

We learned of our daughter’s diagnosis at birth. The pregnancy was going fine until the final doctor visit. My wife had not been feeling well that day so the doctor sent her to the hospital to get some tests done. That is when this roller coaster of emotions started. The doctor came into the room after looking at the ultrasound and said “you are not going home today, the baby has fluid around her lung and we have to induce labor now”. Labor was induced and as it was progressing our Felicity’s heart rate would decrease so the decision was made to do a c-section.

At 2:39AM August 7th our lives changed forever. We heard the first cries of our baby girl. We would only see her for a few brief seconds before the NICU doctor and nurses started prepping her to be transferred to the NICU, where she would spend the first twelve days of her life. As they were prepping her the doctor turns to me and says “she shows characteristics of Down Syndrome”. Shocked I looked at my wife like what did he just say? So I asked him what he said and he said it again. I didn’t even know what to say.

The fluid around her lung seemed like nothing now; the doctors can fix that, Down Syndrome is for the rest of her life. So I followed the doctor and nurses to the NICU with Felicity while my wife finished up in surgery and was transported back to the room. As I looked at her through the plastic enclosure she was in and all the wires and tubes in her I thought to myself, “You’re my daughter and I am going to take care of you no matter what”. My wife took it a little harder than I did. She kept saying I’m sorry and what are we going to do? I would simply reply we are going to raise our daughter. I had my moments of breakdown though. I would cry in the shower so nobody would see because I wanted to be the strong one.

At first receiving a diagnosis like this feels like the end of the world and how are we gonna raise a child that has something can’t be fixed. This is our first child, we don’t know how to be parents let alone a parent to a child with Down Syndrome. As time goes by it does get easier. It’s not the end of the world. It’s the start of an incredible life that I am glad to be a part of. This life has its ups and downs but doesn’t everyone’s?

You can also read another post on a fathers perspective where Preetam shared our diagnosis when Saajan was just two days old.

You know you see propaganda flying around sometimes about how people with Down Syndrome suffer? How they have no quality of life?  How they are a burden?

I’m so honoured to be sharing a real life account by someone who is living with Down Syndrome.  Claire is a fun loving 31 year old who is enjoying life. Claire is aware of her extra chromosome and it definitely doesn’t hold her back – she’s so proud of having Down Syndrome and who she is.

Claire sent me a video message not so long ago which I shared on Instagram – it echoes the advice that she gives at the end of her blog post. Life is beautiful, focus on it!

Below Claire shares a little insight in to her life.

I’ve had Down syndrome for years, it has changed life – people treating me as an equal.

I love going to college I love it to pieces especially Solihull college they treat me like one of them. I also like how they treat me like a young adult and as well they treat me maturely which I really like. I do dancersize on Wednesday and performing arts, we are doing a production of music from around the world, which I love all about music.

I have made lots of friends at college.

Matthew my boyfriend also has Down syndrome our mom both held meetings for other parents of babies with DS, he is my one true love, I love his personality so much

I love living at with my mom and my five cats Jasmine, Junior, Tiffany, Robyn Fudge I love watching dvd’s and watching You Tube my favourite programme of all time has to be the Big Bang Theory. And I love listening to music especially A1 .

I love love love going out to the cinemas with friends and going out for meals out my friends and boyfriend and having a lovely glass of wine! But not too much! And I love partying and dancing, I love being round at Matthews.

My life is absolutely fabulous, I am an auntie to two twins who are both 6, I go to drama with them where I work (I used to go there when I was younger) I help them to build up characters and rehearse and dance to music. I get supported by a group called Brighter life where I do one to one sessions and go to the gym quite a lot with them so I am healthy, the on some evenings we go for food and the cinemas which I love. I love the film clueless.

I love my mom I go on holidays with mom and my family like to the Caribbean we love cruises, she looks after me when I’m ill, she is the mother I always love!

New mum advice – Be positive, don’t be scared and focus on how beautiful you and your baby are.

For World Down Syndrome Day 2018, I’ll be sharing 21 different stories to raise awareness! If you loved this story, you may love the others, you can find them here.

If you’ve been following me for a while, you’ll definitely be familiar with the Sparkles charity – a charity that offers early intervention for children with Down Syndrome in order to give them the best shot at life. We’re currently fund raising for Sparkles, if you’d like to support the cause, you can purchase raffle tickets here.

For us, Sparkles has given us much more than just extra physiotherapy and speech and language therapy for Saajan, they have uplifted us when we’ve felt deflated or when progress seemed slow – Debbie is always so quick to champion Saajan’s victories and redirect our attention to what he HAS achieved. It feels like we’re all part of a very loving family and we are so eternally grateful to Debbie for always celebrating Saajan so hard. She’s full of love, passion, patience and wisdom – her love for what she does shines through at every single session. Debbie often reminds us that although Saajan’s physical development may seem slow, he’s doing so well with non verbal communication.

Equally Saajan always has a great time at speech and language with Mel and Louise – it may seem odd that he attends speech and language therapy at such a young age (from when he was 10 months) when he’s unable to talk but early intervention is key as children with Down syndrome will usually experience challenges with communication. The speech and language therapy focuses on helping the child to talk, but also covers the essential skills needed to communicate effectively through music, songs, turn taking, phonics and tongue control exercise.

The best bit? Both Debbie and Mel always welcome Arjun to our sessions who loves to get involved and tells me how proud he is of his brother afterwards!

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Debbie has kindly taken the time to share her wisdom with you all – I hope it helps new parents who may have recently given birth to a child with Down Syndrome or delayed development.

Hello, my name is Debbie Beneke and I am a children’s physiotherapist who has a special interest in working with children with Downs syndrome. In fact, I currently have over 150 contact sessions per year with babies and children with Downs syndrome. Harps has very kindly asked me to contribute to her site. At first, I felt a bit overwhelmed about where I would start, and what I would say. I have decided to start at the very beginning.

As I am a physiotherapist I guess I am going to be talking about movement, particularly gross motor movement. This is the movement of the larger muscles of your body, which enable you to physically move around your environment.

BUT

Child development is not broken down into areas. It is not linear, it does not happen in isolation in a straight line of progression!

Actually, it looks more like this.

At the same time that your baby is learning to move, your baby is also learning to manage their communication systems, their auditory systems and their sensory systems. This is important to remember because if, for example, your child is faced with a loss of opportunity to be experiencing movement because they have had cardiac surgery, or they have been unwell, this does not mean that their development grinds to a complete halt. It is often the case that children who have had missed opportunities for gross motor development will have really flourished on their fine motor skills or their non-verbal communication skills.

The very first control that your baby will need to learn is head control. The head is the largest and heaviest part of the body and it rules and defines all movement. Your baby will not be able to move themselves up into a sitting position if they cannot control their head. Once your baby has head control, they can then look to gain control of their trunk, shoulder girdle and pelvis. Slowly we will see your child lifting their head, lifting their legs and then starting to roll over. These are all really, really important skills that start to strengthen up the trunk and pelvic muscles, which are all key for sitting. Rolling over onto their tummy, and pushing up onto outstretched arms are key for strengthening the shoulder girdle and head and trunk control in readiness for crawling. It is always worthwhile spending time on mastering floor skills. There is no rush. Once your child can sit with good head control, they can start to engage independently with the world around them. Play is how your child will learn about their immediate environment. A child will find it difficult to engage with their surroundings if they are propped in a standing position. Whereas functional sitting, where they can reach out from their firm base of support for toys and make choices and explore, is far more beneficial for exploring and learning.

If you build a good foundation of floor skills, your child’s ability to move from the floor all the way up to standing on their two tiny feet, will be much easier for them to achieve.

If you understand that learning to move is a process of building blocks then the very next and single most important thing to do is to throw out the milestone chart. This serves no purpose whatsoever to you as a parent. It might be helpful to researchers and health care professionals but it is of limited value to you. The most important action as a parent is to get access to good advice, find out what your child’s very next building block is, and how you can offer opportunities to practice that. It is not a race to get up into walking. If your child is not walking by a year, it is not a reflection on your parenting skills. In fact, children who are placed in standing, before they are ready to stand, often take longer to achieve walking. Children who spend time on the floor building up their shoulder girdle control, their trunk control, their hip stability and go on to crawl and to engage in their environment, spend far less time mastering their walking skills.

In the first year, the overarching goal is to consolidate the floor skills which will allow your child to access their exciting, noisy and colourful surroundings. Ideally, the very first big goal on the horizon is crawling, not standing up and walking.

Drawing on my years of experience I am confident your beautiful baby will bring laughter, joy, connection and significant contribution. As the parent of your baby you are the expert. Enjoy learning alongside your baby and most importantly, celebrate with them. Celebrate their successes. Remember, it is not a race. When a milestone is achieved, do not look immediately to the next one.

Pause.

Celebrate.

Give time to consolidate and master.

Enjoy the journey, I know that I do.

Debbie Beneke BSc.MSc.MCSP

Specialist Children’s Physiotherapist

We’re currently fund raising for Sparkles, if you’d like to support the cause, you can purchase raffle tickets here.

When I first found out that Saajan had Down Syndrome, I had a perception of what it was – accounts like Karen’s for her son Caleb who are much further along in their journey prove me wrong on a daily basis. Oh how naive I was!

A while back, I asked Karen to share her initial journey to now to give other parents hope like she has given me. Karen and her husband embraced this beautiful new journey from the get go – they feel it has expanded their world vision as opposed to entering a totally new world – I love that!

Karen:

I was asked a couple weeks ago by an IG friend about our early days with Caleb. Where was my head back then? How did I process the diagnosis, and what happened after that? What were my hopes and dreams for Caleb, and did they change after his diagnosis? This sweet mama is concerned about her child’s development and what the future might look like. Of course she is, because she cares for her child. It’s a natural parental instinct – for every one of our children, but more so if your child has a disability. The default for almost every parent when they learn they are expecting is that they will have a typical “healthy” child. If you happen to be surprised by a disability diagnosis, unless you’ve had an opportunity to interact with someone with a disability/condition/difference, you really don’t know much about any of it all initially.
I like to say that Caleb’s birth didn’t thrust us into a new world, but actually expanded our world vision to include others that had not been part of it (much, sadly) before that (hopefully more inclusion is helping with that!). It was a shock, for sure. But I really had no preconceived notions about him before his birth. We knew he was a boy, and that was about it. I didn’t have dreams that he would be the President, a professional athlete, an actor, an artist, a musician, etc. We were just thankful for this bonus baby, and took things day by day.

As such, we didn’t have that difficult of a time with his diagnosis. No mourning of the baby that we thought we’d have, because our minds hadn’t gone there. We dove in and got to work. Perhaps the fact that we were older parents and had raised children before helped? Who knows. I just know that even early on, we knew he was a blessing, not a burden. We celebrated his life! And wanted others to too! We were eager to learn everything we could to help him learn and grow.

We’ve had struggles, of course. What parent doesn’t? Our struggles are different with Caleb than they were with Courtney. She was quick to learn, a smart cookie. She tested out as being Gifted, even. Everything was fairly easy with her. Caleb, on the other hand, was late with so many things – walking, talking, etc. But we just kept plugging away. Trying to expose him to as many situations and opportunities as possible. When he started soccer at three years old, he had just started walking, so kicking or anything else was quite a stretch. But we kept going to practice. He mostly sat and watched, but we felt it was productive, being there. We were exposing him to new friends and new activities, and in talking with parents who were there, we were learning from those who had been on “the journey” a bit longer than us. He didn’t participate much that year, but the next year, he was right in there with the other little ones.

One of the best things, for us, when Caleb was young, was our local Down Syndrome Association. Ten (almost eleven) years ago, the DSDN was not around. Facebook was relatively new; our online support was limited to BabyCenter (which was very helpful BTW). But those early days of connecting with other local parents who were in our shoes helped so much. We shared our struggles, and our successes. We had playdates, and workshops. We learned together and supported each other. And now, all this time later, we are still friends through this common denominator called Down syndrome.

What were some of our biggest fears back then? I think it’s safe to say that Acceptance has always been a concern. It’s one of the reasons why we worked (and still do) work on appropriateness with Caleb. Being polite, having proper etiquette, social skills. They will take you a long way in life, and it’s no different with someone with a disability. Certainly, there are social cues that he will never “get”, subtleties that even some typical people don’t pick up on. But for the most part, he is pretty good in public, unless he’s tired or not feeling well.

Speech and language was another concern, especially as he gets older. Caleb does speak, although sometimes Mom or Dad has to be the interpreter 😊 Caleb’s had Speech and Language Therapy since he was a baby … gong on 10 years now. We still work on it – daily. Again, exposing him to situations and activities helps, but I feel as though he might always struggle with this area. It’s a tough one for most of our kids.

His strengths? His big beautiful smile, certainly. His love of life, of enjoying each moment. He loves sports, he is a good friend and great encourager. He is quite social. He is a great traveler. He loves to dance, and to cook with his dad. Having worked “in the field” for some years now, I’m aware that using his strengths is something we can (and will) be doing to consider job opportunities for the future. His future? Who knows? Maybe something with a culinary program. Maybe a restaurant, like Tim Harris! Maybe working for Publix, a great company that both his dad and I have worked at. Maybe college, or a trade school. Options such as these are growing by leaps and bounds for individuals with intellectual and developmental disabilities. We look to the future with excitement for Caleb, and will encourage him in whatever path he might choose for himself.

So, here we are, on the verge of ELEVEN. What’s that saying about the days go by slowly, but the years speed past? SO true. How can it be? The future looms closer than ever before. Looking back, however, I can say that parenting Caleb has been quite a journey so far. Challenging, rewarding, fun, joyful, difficult. Filled with adventures and disappointments, but always filled with love.

Would we change Caleb if we could? Would we take away the Down syndrome? No way. Even with all the hard times and struggles, Down syndrome is just part of Caleb. He wouldn’t be Caleb without it. We love our son – just the way he is. His life is absolutely worth living and I will continue to shout that to the skies as long as I am able.

My advice to parents of younger ones with Ds? Keep up the good work. Look for support when you need it, be the support when you can. I know what it’s like, but I also know when you look in your child’s eyes, that amazing love that radiates out. They are worth it, every single baby.

Peace,

Karen