Being Dan’s Dad

I have to let him live his own life, let him make his own choices and hope that my influence as a dad has helped him make the right life choices.

Mark and Dan

Being Dan’s Dad… By Mark Jones (UK, dad of 2, advocate)

Mark Jones and his family live in Gloucestershire, UK. He tells us a little bit about what it’s been like to be Dan’s dad so far.

Ihonestly had very limited knowledge of people with Down syndrome before Dan came into our world. I have a vague memory of a neighbour with Down syndrome when I was very young, and my parents spoke very fondly of her. That’s about it! Fast forward twenty years. I turned thirty years old five days after Dan was born, and my wife Karena was twenty-three. We married in 2001, and Dan was born around a year later. We were stunned by the postnatal diagnosis. However, I think it had a lot to do with how the news was delivered, and in our case, it was broken very sombrely and made us feel very sad. We were sat down and handed a Polaroid photograph of Dan in the Special Care Baby Unit. We thought the worst; we thought we’d lost him. We were then told the “sad news” that Dan had Down syndrome. We had no idea until that very moment. We had no prenatal testing; this is something we hadn’t considered at all. If we had, I’d like to think we would have had the right information and support to make the decision to go

ahead with the pregnancy. Honest and balanced advice at the point of diagnosis is extremely important. It so happened that Down syndrome was not the only diagnosis. Daniel had a severe bowel problem that needed emergency surgery, and we naturally prioritised that. In a way, the worry of the surgery put it all into perspective for us. My instant concerns at the beginI am his voice, ning were: Would we be able to give him the best life? Would he be able to make his and I will own choices? Would he have friends? All continue to be of these worries faded pretty quickly. He loves discos, his local football team, and his voice until he he definitely has more friends than I do! finds his own. I had an early selfish vision of what a father–son relationship should look like when Dan was born. I pictured him playing football, watching Star Wars with me, liking my taste in music. The truth is, Dan has more than embraced his own likes and interests. I have definitely gone from wanting my child to like the things I like to fiercely wanting him to do whatever makes him happy and for him to make his own

choices. I have to let him live his own life, let him make his own choices, and hope that my influence as a dad has helped him make the right life choices, just as I hope the same for my very mainstream daughter Eve, who is sixteen years old. Incidentally, Eve is a fabulous artist and is on the verge of finishing her GCSEs in secondary school. So she is currently busy making life choices of her own as well. She’s a wonderful sibling for Dan. I feel that having him in the family has really influenced Eve to be patient, kind and very compassionate –all great attributes for her future. Of course, our Down syndrome journey may be different to other families who have a child with Down syndrome. When Dan started experiencing speech regression in 2012, when he was eleven years old, it prompted a lot of questions from us. Why was this happening? An autism spectrum disorder (ASD) diagnosis in 2019 (I know, right? Seven years later!) finally confirmed what we suspected all along due to his social and personality traits. If only health professionals listened to and heard better what parents have to say about their child. The advantage of obtaining a professional ASD diagnosis is that we can now request that an adequate plan be put in place for Dan, one that will take into consideration his challenges and reflect Dan’s aspirations and future needs. We are currently in the middle of discussing with Dan what he wants in adulthood. He’s already made it abundantly clear that he doesn’t want to stay in education, so we’re working on a plan for that. He loves cooking, and therefore we’re hoping he can go into catering. We just want him to be happy. I am his voice, and I will continue to be his voice until he finds his own. In the meantime, Dan drives me to do whatever I can. He can take over the reins when his communication skills are back!

[Mark Jones has been advocating for the Down syndrome community since 2012, creating designs to raise awareness for World Down Syndrome Day (21 March), anything from proposals for Google Doodles to badges, line arts for window displays and Facebook frames. He even designed the Down Syndrome Diary logo.]

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