Written by Ryan’s mum Claire
Hi, this is Ryan, 13, and his brother Noah, 10. Most of the time these two are the best of buddies, always protective of each other, but every now and then, they do have some disagreements as siblings do!
When Ryan was born, we didn’t know he had Down’s syndrome and being our first child, we didn’t know what to expect as new parents anyway, but we certainly didn’t think our world would be turned upside down within a few hours of Ryan being born.
It was a huge shock to find out Ryan had Down’s syndrome. Neither of us knew anything about it, why would we, it had never been mentioned at my scans and shown in blood tests.
I can still remember now opening the letter with my blood results on and reading that I was very low risk of having a baby with Down’s syndrome, at the time I thought ‘that’s good’ and filed the letter away in my maternity notes. I never thought about that again until they told us that our beautiful newborn baby boy had Down’s syndrome.
What do you do when you hear those words? Is there a certain way you are supposed to act or a protocol you are supposed to follow? I so wish there had been as we had no idea at all what to do. Here we were, our new son sleepy soundly in his little cot next to me in my hospital bed, with the midwives and paediatrician standing staring at us, having just given us Ryan’s diagnosis and waiting for a reaction, what were we supposed to do, shout, scream, cry? We were already sleep deprived and in a state of shock, thrown into this brand-new world where Ryan was going to be different to our friends’ babies and we were going to have to become different parents to what we thought we would be.
In those weeks, months following Ryan’s birth it was just a blur. I had no idea what I was doing, I couldn’t even read any information on Down’s syndrome. Every time I saw those words ‘Down’s syndrome’ the tears would just stream down my face and I thought how on earth would I ever be able to do this if I can’t even look at those words. Ryan of course was just like any other newborn baby, sleeping and feeding most of the time, unaware of what was happening around him.
Now when I look back at my time with Ryan when he was born and those few months after, I regret a lot of it. Instead of just enjoying my baby, I was so wrapped in worrying about the future – how would we cope, would he have to go to a special school, would he ever live on his own? That’s all I could think of, the panic and the worry about what was to come and I feel now that I missed out on so much in the those first few precious months where really, he wasn’t so different to any other baby and that is something I am never going to get back.
Of course, as Ryan got a bit older he started to fall behind reaching his milestones compared to other babies, and I think that is where it hit us again what having Down’s syndrome meant. He didn’t sit up completely on his own until he was around 18 months, and the first step he took independently was when he was three years, one month. That was such a special time, he had worked so hard to build his muscle strength up and watching our amazing boy just take that one solo step felt like we had won the lottery.
When Ryan was three years three months old, his brother Noah was born. I had desperately wanted to experience what it would be like being a mum to a ‘normal’ (I hate that word!) child but I don’t think I really appreciated how hard it would be with a newborn and Ryan. Even thought he had taken those first few steps, he was far from being able to walk independently, even to this day he is unsteady on his feet at times and uses a wheelchair. I had to have a double buggy to be able to go out with both boys and still had to help Ryan a lot. Those first few months were just purely exhausting until we got into a routine and Ryan started nursery school.
We had looked at mainstream schools and special schools for Ryan and felt Ryan would thrive more in a special school. Quite early on he went by taxi, which he absolutely loved. Ryan has continued his education in a special school with a fair few ups and downs (that’s a different story to tell!)
As Noah grew up, he soon overtook Ryan in various milestones. He walked independently a lot quicker, he talked and was toilet trained early on. Ryan’s communication improved as he got older, he signs most things but does say three or four-word sentences, you can have a conversation with him and he has a wicked sense of humour.
By the age of six or seven, we started to notice different behaviours in Ryan. He was very regimental in his routines, taking him up to bed we all had to go upstairs in a certain order, he had to have food in a certain position on his plate and his drink in the same place on the table. If we didn’t do these routines, then Ryan would get distressed and not do anything. Little by little these routines became more frequent and intense and we started to look into the diagnosis of autism. It took a few years, observations and testing but eventually Ryan was diagnosed with autism and in some ways, it was a relief to find that out because we could access the help that he needed and find ways to make life as easy as possible.
Even now autism plays a major role in his life. If we miss one step out of a sequence, it has a massive effect and Ryan will often refuse to do what we are doing until we go through all the steps he has to take. He will only eat certain foods, mostly beige foods, and is very sensory orientated. If we go out for tea, or just for a cuppa and cake, he has to pick where to sit and who to sit next to otherwise he stays rooted to the spot and refuses to move. Quite often when we are out and about and he is struggling, if he is not in his wheelchair he will sit on the ground and refuse to get up and at 13 years of age, he is a big lad to be able to pick up!
We have learnt to pick when we go out and where we go too, to make it as easy as possible for us all. Sometimes it is not worth the stress and anxiety trying to do things when we know Ryan won’t cope.
It is unfair on Noah at times, he does tend to miss out a bit. That is why respite for Ryan is so important. He has been going to a local respite place since he was eight years old. He generally goes every month for around three nights. It did take me a while to get used to him going there and someone else being responsible for him but over time, I have most definitely appreciated the time and space we have when he is there. Most importantly, it gives us quality time with Noah. We can do things that he really wants to do, that we most likely wouldn’t do with Ryan, like going to the cinema. Noah is a real film buff and going out for tea and letting Noah decide where we go and where we sit. It may seem like little simple things to other people but to us it really makes a difference.
Noah is an absolute credit to us and growing up with Ryan he has known no different, but having a sibling with special needs has had its ups and downs for him.
I love watching the brotherly bond they have. Ryan comforting Noah if he is upset, and Noah helping Ryan to do things. It’s a bond like no other and they are two very special amazing boys.
If I had one piece of advice for new parents who have a baby with Down’s syndrome it would be to just enjoy your baby. Enjoy the newborn baby stage, they are no different to any another newborn. You have the rest of their lives to worry about the future and what might happen, for now, just enjoy your snuggles and get ready for a world of never-ending love. It is a love like no other and we are by far the lucky ones to be able to experience it.
Thank you so much for sharing your story with us Claire and Ryan
Did you know the DSA hosts special support sessions for parents and family carers of children or adults with complex needs or a dual diagnosis of Down’s syndrome and autism spectrum disorder? You can find out more about them and information in general about Down’s syndrome and complex needs here.