Living with down syndrome and autism

I’m going to be honest before I had Ryan I knew nothing about down syndrome. The thought never entered my head when we started thinking about having children. I can still remember when I was about 20 weeks pregnant with Ryan and getting the letter with the results of the blood test for down syndrome and reading it thinking ok that’s fine I’m low risk for having a baby with down syndrome. I never imagined that I was carrying a beautiful baby with that extra chromosome and after all I was only 30 not even high risk. When we found out the diagnosis at birth we were completely floored, the doctor and midwife came into the room, the doctor looked at Ryan said ‘we will do the blood test for trisomy 21 but I can just tell from looking at him he has down syndrome’. At that precise moment in time we didn’t know what to say or what to think and I remember everyone standing there looking at us waiting for a reaction when all we really wanted to do was be left alone. I did end up being totally alone that night once Kristian had gone home Ryan started choking and the midwife and doctor whisked him away putting suction tubes down his throat to clear his airway and then he was taken to the special care baby unit to be monitored and had treatment for jaundice, my first night with my new born baby and I couldn’t even be with him.

Every bit of information we received from the hospital seemed to be on the negative side, down syndrome children had higher risks of being born with holes in their heart, they are more susceptible to getting leukaemia, problems with eyesight and hearing, it just seemed to go on and on with negativity and nothing to give you a little bit of hope for the future. Ryan was lucky his very small hole in the heart has virtually closed up over the years.

What the literature doesn’t tell you is how amazing and truly remarkable our children can be. They work so hard to do things that the majority of us take for granted. Ryan didn’t say ‘mummy’ until he was 6 years old and it was so emotional hearing him say that for the first time, he had worked hard on his speech and gradually it was getting better. Every little thing you start to appreciate more as Ryan has worked hard to get there and you begin to build up valuable life skills that will hopefully help him to be a bit more independent in life.

As Ryan got older it became more obvious to us that in his behaviours he had autistic traits. It is common for down syndrome children to portray these kind of traits but as Ryan got older this seemed to show more and more. It started off as little things, having to have his toast a certain way round on his plate, having to have his drink in a certain place on the table but gradually these behaviours became more and more obvious to the point at bedtime we have to do the same routine every night – go upstairs in a certain order, make sure Noah is in bed first and then both of us have to put Ryan to bed, I have to cuddle and kiss him first and then his dad has to cuddle and kiss him (it doesn’t seem like a major thing but we have to do this every night otherwise Ryan will not even come upstairs to bed and it does feel a bit like groundhog day sometimes!) he rocks a lot of the time, grinds his teeth, watches the same thing on his ipad usually listening to a certain sentence again and again and again, he has to sit in the same chair at home and at grandparents and he will only eat certain foods. Earlier this year Ryan was diagnosed with autism and social anxiety, I was convinced for the past couple of years that Ryan was autistic but it took a long time and a lot of observations with behavioural nurses, psychiatrist and endless tests before finally they agreed Ryan was autistic. At the point in time his anxiety was also diagnosed, he has struggled a lot this year with anxiety and become more and more anxious of being in loud busy places, it does make it hard when we go and about because we want to do things together as a family but sometimes we have to accept the fact that Ryan won’t cope with what we are doing and we have to change our plans or leave Ryan with grandparents.

It is difficult at times as Ryan can’t communicate what he is feeling and sometimes you are second guessing how he feels or what his behaviour will be like. This can be difficult for Noah also as a lot of the time the focus is on Ryan and the struggles we face with him and it does feel like we don’t give Noah the attention he deserves or needs. That is why it is nice every once in a while I take Noah out to the cinema, he loves films!, and I get to spend some quality one on one time with him, which I love.

All we wish for is that Ryan is happy and healthy in life, that when he is older he can live as independently as possible and have a life of his own, we couldn’t wish for anymore than that. Down syndrome isn’t an illness or something to be scared off, yes life can be hard and you face hurdles you never thought were possible but with that extra chromosome comes a whole lot of extra love, hugs and laughter and who could ask for more than that.

xxx