Chris shares his story with us about what it’s like having a son with Down’s syndrome.

Chris James is a teacher of special needs children at Uplands School and most importantly a dad to his two wonderful children, Josh, 5 and Jessica,1. His son Josh has Down’s syndrome. 

J osh is an amazing young lad. He likes cars, dinosaurs, drawing, painting, reading and going to soft play. He has a fantastic sense of humor and never ever fails to make me laugh.

My favorite part of the day is, without doubt, bed time. Josh and I will sit on his bed whilst I read him story after story and he cuddles up to me. Every night I say to him “you are clever, clever, clever, handsome and funny”. He smiles and pulls me in for a cuddle. The other day he said to me “you’re my best friend daddy” which put a lump in the old throat.

Josh has just started school and despite our anxieties as parents Josh has just got on with it. He loves school! He loves his one-to-one and they have a great time playing – I mean learning together. He has come on such a long way since he started which is a huge credit to the school (Oakhurst) and we can’t thank the staff there enough.

When my wife Michelle fell pregnant we very quickly made the decision not to have the test for Down’s syndrome as there was a small chance of a miscarriage. We decided to just let nature take its course.

When Josh was born I was overwhelmed as all parents are when their children arrive into this world. I remember thinking his eyes looked oriental, but quickly brushed aside the thought as I just assumed that must be what all new born babies look like. After all he was also covered in goo!

Over the next five or six hours we had a lot of visits from a lot of different doctors. Again, I just assumed this was totally normal and didn’t think anything of it.

It was only at about one in the morning when a consultant announced “your son shows many of the characteristics of a child with Down’s syndrome”.

I was completely shocked when I heard these words. My head span. I didn’t know how to re-act. I think I just said “ok” and then sat down and waited for the doctors to leave the room.

At that point my head started to fill with a lot of negative thoughts. One of the first was that I was going to outlive my own child. I was very ignorant about Down’s syndrome and had only heard what I now know to be very outdated and old-fashioned things about it.

My second thought was that I was going to have to give up
my job to be his carer. Michelle was earning more than I at this point so it would make sense for me to look after him. How would we cope financially? What does caring for a “disabled” child, as I then thought, entail? Would I cope? Would I love him? What would my friends think? How was I going to tell people? Would he be able to speak?

All of these thoughts burst into my head in rapid succession. I remember looking over to Michelle and being surprised at how calm she looked. I think she took a lot longer to process the entire event. She also seemed to be immediately accepting of him. She is a magnificent mother.

I now feel ashamed of those thoughts, although I know they are normal when confronted by such unexpected news.

Now I feel completely different. I always say that we were lucky to have Josh. This requires no effort or self-deception to say this. He has enhanced our lives so deeply that I would be lost without him. If someone came up with a pill that could cure Down’s syndrome I wouldn’t want him to have it. I love the cheeky fella exactly like he is. He is my best friend!

When we told our family they went into overdrive searching the Internet for anything they could find about Down’s syndrome and almost immediately found the Swindon Down’s Syndrome Group page.

We contacted the Group almost immediately after we left hospital. We were desperate for information more than anything else. The next morning a lovely lady delivered a package with loads of information about children with Down’s syndrome. We looked through everything. One of the nicest things was looking at the pictures of the Group members on the web site. They all looked so happy and were having a great time. It was a relief to know that there was a community of people who knew what you had been through and what you were about to go through.

Being a dad to a little boy with Down’s syndrome is the most fun you will ever have. He loves to splash me when he’s in the bath and has just discovered that Calpol syringes make the best water pistols. Josh and I called his mum upstairs and then squirted her – naughty but funny! When we are together we are just a bad influence on each other (in the nicest possible way). We have pillow fights, build lego towers, tickle each other, hide from each other, chase each other, sing together. It is honestly such a laugh.

Now his sister is on the scene the trouble is most definitely double. It’s been so lovely to see how they have grown to love each other. When she first came along he kind of ignored her. When she could walk they just pushed each other around and now, finally, they play, share, cuddle, laugh, copy each other and well… still whack each other occasionally.

I am incredibly proud of him. It takes the wee man a bit longer to do things but it’s always worth the wait.

If I could share any words of wisdom I would say that you will love your child unconditionally, even if at first you have reservations. You will very quickly forget that your child has a syndrome and just see them as your child.

You will worry about your child constantly. Why is it taking them so long to walk? Why aren’t they talking more? My goodness my child gets horrendous colds, is that normal? My advice here is to talk to other people who have children with Down’s syndrome. Nothing you are going through has not been gone through before by other parents who have had this experience and all have them have come out the other side to tell the tale.

Finally I would finish by saying this. You will come to see this event as a gift. It is like you have been given a joy pill that you get to take every day. So have fun, keep talking and get ready to laugh… a lot!