Jamie and Marie are a couple from Hartlepool who have been together for 7 years, they live separately to better manage their hectic family life. Their youngest child Owen has Down’s Syndrome and has had health problems which have led to him being seen by multiple specialists and consultants. Jamie knew straight away that Owen had Down’s Syndrome but Marie says she was shocked and upset and didn’t come to terms with it well. She says “I thought I don’t drink, I don’t smoke, I did everything right, why is he Down syndrome? Why me, why us as a family?”
Here they tell us about how things have been for them as a couple and a family and share their advice for other parents with a child with additional needs.
Q: What was it like between you two as a couple?
M: It’s made us stronger I believe. I found it very hard staying in hospital, the nights were just so long and when Jamie would come the next day I would be so excited to see him and I do believe we grew stronger. It was either make or break and I do believe it made us.
Q: Can you think of any strategies you’ve used as a couple to build on that strength?
M: I would just say with Owen being so poorly it was him more than anything, he showed us what strength was. So we just think if we didn’t get through it we wouldn’t get through anything. Owen’s done it, Owen was so strong for us I think we had to be strong for him. It was more for Owen.
J: Nursery is a fantastic thing, to have that time for yourselves. Like I said he’s so full-on as you can imagine. At first we were told we had to put him in a nursery by a health visitor because of the separation anxiety he just developed all of a sudden. We didn’t know why, he was just scared of everyone, someone would pop their head round the door and he would scream. It was quite serious to the point where he would make himself sick. So we were like ‘how do we deal with it?’ In the end Marie moved into that 4-bedroom house where he had his own little room. It was torture at the beginning, he was crying all the time because he wanted to be with us and in the end we made the choice to put him into nursery. At first we didn’t want to, how was someone else going to cope with our little boy?
M: Do they know what he wants, do they know when he wants it? Do they know what he’s crying for?
J: Fortunately, his godmother was the deputy manager of the nursery at the time and our friend works there so we had a connection with the staff and that was the only reason why he went to Belle Vue Little Treasures. We had more visits than normal as initially he hated it but now he loves it, he goes in, waves at you and shuts the door. He loves it and it has been one of the best things. He has his days where he’s torture and yesterday was one of those days where you wish they didn’t break up.
J: And it’s just about making time for yourself, you’re not just a parent. You need to remember that you’re still a couple. Like we’ve said about shared care, what happens during the week it doesn’t matter whether I’ve got the kids or not got the kids, it’s non-stop. On a Saturday my kids all go to their mother’s and get sent back at 12 o’clock dinnertime, and Marie’s 2 kids go to their grandma’s and sleep there. Owen goes to a babysitter who’ll have him on a Saturday now and she loves spending time with him as she’s his godmother. There are times when we’ll go out for a meal or cinema. This weekend we’re going out for a friend’s birthday so we’re having a drink this weekend, which is a rare occasion as well. But 9 times out of 10 we just sit in, get a takeaway and just watch a film because it’s just nice to do nothing. Just make time for each other because once you have a kid it’s just non-stop all the time and I think that’s the problem quite a lot. It’s a problem globally once you have a baby you forget everything else.
Q: If you were talking to other parents that have just had a diagnosis or are waiting to find out what’s happening, what would you say to them in terms of tips and advice about how to support each other as a couple? Or just being as a couple, what would be your advice or top tips?
M: You’ve just got to remember who you were before you had the baby because nothing’s changed really apart from a little person’s come into your life, which sometimes does make it complicated but I think you lose yourself as a person and as a couple when you’ve had a baby.
J: It’s not the end of the world, is it?
M: No, it’s just the beginning…
Q: And you were saying you try and make time for each other as a couple?
J: Yeah, we spread ourselves out quite well, spend time with our children, spend time as a couple, you know, and try to do as much as possible really. Don’t get us wrong, we do have our ups and downs obviously as anyone does. Things do get quite hectic where you wake up on the days you can’t be bothered because it’s non-stop. Silly things like when he was first born and I wasn’t driving so we had to depend on people getting us to the Freeman but it’s so much better now I’m driving. So it’s daft little things like that, that help a lot. It was just time-consuming jumping on trains to go to James Cook and it was torture.
Q: If I went and asked people who know you really well what your strategies are, what would they say about you?
J: We’re amazing (Marie agrees!), and I know they will. We’ve learnt that no one’s there to judge you, they’re always there to help you. No question is daft when you’re unsure at the end of the day.
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