child with undiagnosed genetic condition

If you read our article yesterday from Dan White, you will know that all this week My Family, Our Needs is encouraging SEND Dads to speak up.

It’s Men’s Health Week and Carers Week, so there seems to be no better time to share some stories from Dads who have children with additional needs.

Today we hear from Oliver Mann, whose son Freddie was born with an undiagnosed genetic condition.

That’s the number of days I have been the father of a child with special needs and disabilities. Our son, Freddie, is now 8 years old. Not a day goes by where I don’t wonder what life would have been like if he hadn’t been born with an undiagnosed genetic condition. Eventually, a number of years later it was diagnosed as a De Novo (non-hereditary) genetic condition, Tuba 1A. The issues were picked up at our 20-week scan. What should have been an enjoyable first pregnancy changed on that day, as did our expected parenting lives.

At the start

When entering into that pregnancy, we were coming out of a difficult period of mourning as my wife, Aimee, had just lost her father. We were ready to start a family for a while but this was the first point in time where things felt right. Just prior to our 20 week scan I remember having an incredibly positive outlook about things for the first time in a long while. That feeling was soon replaced with feelings of doubt, uncertainty and fear.

For a long time, I played on the positives and tried to keep Aimée looking at the positives too. For the next 15 weeks, we had scan after scan and so many tests that I lost count. All the while our approach was that if the Dr’s couldn’t tell us what our unborn child’s prognosis was, we would continue with the pregnancy. Freddie was born 5 weeks early, and suddenly we were on our own with a baby. There was also virtually no follow up from all of the medical professionals we had been dealing with up to that point.

For several months we lived in blissful ignorance as we had a baby just like everyone else. As the weeks ticked by, however, and milestones were being missed, we slowly realised that our parental experience wouldn’t be a typical one.

Life as it is now

At 8 years of age, Freddie has a severe learning disability and needs support in pretty much every area of his life. But he can walk, has a basic understanding of language and interacts with people really well. He’s a really sociable little boy. To a lot of people, he can look ‘normal’ when they first meet him but then his verbal interactions and physical ability make it clear he has a disability. We have two other children, aged 6 and 4, but the early years were stressful and hard. It was so much more difficult to help Freddie learn to crawl and then eventually walk. We are still working on his speech which is coming along bit by bit. He also has weekly physiotherapy and numerous other interventions.

It’s been hard seeing the minimal achievements made day by day until the big moments happen. For a long time, we were unsure if Freddie would walk independently. He does so now, but with obvious differences to his peers. When we had our second child I remember we had a goal of Freddie walking prior to Bella, but he never did. It was pretty hard coming to terms with that. However, at the same time, the moment when Freddie finally walked was incredible for all of us.

I have been lucky that Aimée has been Freddie’s champion. She used her skills and attributes to run the ‘business’ that is Freddie, dealing with all his appointments, specialists, and doing the research to find additional therapies to promote Freddie’s development. I have supported in the best ways I know, sometimes successfully; sometimes poorly. Always learning though!

Pressures on our marriage

We have been there for each other as much as we can be, but it hasn’t been an easy time. In the first few months, things were so stressful that I had no idea if we would make it as a couple. I’ve since learned that the rate of divorce or separation amongst parents of children with additional needs is significantly higher. Over the years I think we’ve learned when to lean on each other, and when the other is in need. Sometimes it just happens that both of us have struggled mentally at the same time. That is when life is very challenging.

For a long time, I think I thought life would get easier the older Freddie got. I realised eventually that I had retained the mentality I started with at the outset of problems being identified with the pregnancy. Trying to stay positive, and be as supportive as possible for Aimée to keep us all moving forward. I guess I don’t talk about my feelings as much as should.

A realisation of the situation I was in occurred to me about a year and a half ago. This led to me breaking down for about an hour and just letting a lot of emotion out. I’d say it probably scared me as much as it did Aimée, who has been asking me to go for counselling ever since. It’s not something I am keen to do at the moment but never say never. I guess I try and talk a bit to friends who have a grasp of my situation, that also have their own issues on which I hope I can give some constructive support for.

Finding a release

I’ve always been keen on most sports, I love anything which gets the adrenaline going. However, as I get older, with more responsibilities those fun activities have taken a back seat.

A few years ago we were on holiday with friends who do a lot of running. I’d been threatening to start getting fit, but I had so far been using the kids as an excuse not to. With the extra support of those friends, I finally got up and started running. I have never been a runner. However, I now use the time I’m out to release my tension and anger and reflect on my family situation when things are tough. It’s a great release as well as an excuse to get out of the situation for an hour or so. That’s probably my best therapy at the moment. A bit of physical therapy which promotes my mental strength.

Our final article for Men’s Health Week and Carers Week, written by Paul Arvidson, the Dads and SW Parent Rep for Swan UK, will be published tomorrow. Paul will be sharing some practical tips and resources for Dads to get the support they need.