There are still people who believe disabled people shouldn’t be parents

Guest blog from Marie, who thought she may never have children because of her disability. After six years of waiting and exploring different options, Marie and her husband Dan became the proud parents of Mark in November. Thirty-one-year-old Marie has brittle bone disease, and in the words of her husband Dan, “could break her arm reaching for a kettle”. Marie’s brother died from the same genetic condition after falling from an unsuitable wheelchair. A wheelchair user herself and with a fused spine, having a baby was never going to be straight-forward for Marie.

Marie holding her baby Mark
Marie with her new baby Mark

When Dan and I first got together I was quite honest that I didn’t know if we could have children. Some women, even with my severity of brittle bones disease, can have a baby without a problem. But I have a severe spinal curvature and a heart condition as well, which means it would be dangerous for me to carry a baby to term.

We always said that we would adopt, but when we looked into adopting, we discovered they make it really hard if you’ve got a disability. I felt devastated. I thought that was it; we’re not going to be able to have children. But it was always at the back of my mind that we wanted a child. I even, at one point, thought about risking it and trying to carry a baby myself, but I knew it would have been too much for me.

It was a friend who suggested going to a surrogacy organisation. When we first went to talk to them I was worried; I thought they wouldn’t touch us because of the disability. But they were great! They didn’t give us any indication that it would be more difficult as a disabled person. I thought we would have to wait years and years for a surrogate to choose us, but we waited about 18 months.

Obviously there are things that have been and will be difficult. The surrogacy has been quite emotionally difficult for me. I feel guilty sometimes that someone else had to go through all the pain and sickness for us to have a baby.

Marie and Dan pushing Mark in a pram
Marie and Dan taking Mark for a stroll

I’m also anxious about what people might think. There are still people who believe disabled people shouldn’t be parents and we’ve had some really strange reactions from people. When Dan and I went to John Lewis to buy the cot, for example, they didn’t know what to do with us. They were like, “Is it for a friend?” They didn’t know what to do when we said it was for our baby. They were stood there staring at us for like 30 seconds.

There are so many things we don’t know as well, because we’re first time parents. We had a few sleepless nights, before Mark was born, worrying about things. We went on a First Aid course, so we know what to do if he’s choking or something. We’ve wanted a baby for a long time but it doesn’t quite prepare you. Your life changes so much.

Like all new mums, I’m exhausted, but having Mark in our lives is just so amazing. Dan and I are learning more about Mark and being parents everyday – it’s an adventure!

Marie is going to be blogging about being a new mum over the coming months, and has been raising awareness by talking to Sunday People

Brighton celebrates as Face 2 Face turns one

Guest post from Amanda Mortensen who is the Coordinator for Face 2 Face in Brighton and Hove.

Amanda cutting the cake
Cutting the cake!

We celebrated our first year in Brighton with a party last weekend. Twenty six families came together to celebrate with a special lunch, a fantastic inclusive drumming session, a messy art table and a sensory room. Families also got a special sensory goody bag to take away. 

We held the event at Scope’s day centre, The Sharon Collins centre, which was a brilliant venue with a sensory room, music room and lots of space to move around. Barry Kidner, the team coordinator there, has been really supportive and helped the day go brilliantly and Liam Synnott, service manager, came down to help which was very much appreciated.

The day was well attended by our befrienders and their families and children from six months to 16 years all had a great time. Families told us they really enjoyed the day and thought the venue was fantastic:

“Congratulations Face 2 Face, a great service for families,” 

“A fantastic day, all of us enjoyed it. A grand event, thanks.”

“Well done for making Face 2 Face a reality in Brighton,” 

Parents also talked about feeling isolated at the weekend and really appreciated a safe, stimulating environment in which to get together.

A great year for Face 2 Face in Brighton and Hove

Thanks to money raised by HealthWish through the Health Lottery, we’ve had a great year and are really looking forward to our second year. We’ve launched groups for children with Down syndrome, groups at the city’s special schools for children with profound and multiple learning difficulties, a group supporting children who are under the preschool special educational needs service and a group for dads. Our first dads’ group last week (in a pub, obviously) was with nine local dads and we hope to reach many more in the coming year. We also ran a really successful sleep workshop led by the charismatic Emma Sweet from Sleep Solutions. Parents are still talking about it on Facebook!

Next year, we will continue to look at new ways to support parents. We will continue to work closely in partnership with the local authority, which has proven really effective this year. Look out for a creative writing course (this will look at the parent journey, but you never know, we may discover the next JK Rowling). We will be also be training up a new team of befrienders to increase our ability to offer support to parents. Our current team are amazingly dedicated and several are now starting to lead our groups as well as offering vital one to one befriending.

Well done and thank you to everyone who has made the year a success!