I have said it before and I will say it again- although social media has its dark sides, it has introduced me to a group of AMAZING people and that includes today’s interviewee.
I met Bex in an Instagram parents group. As a fellow disabled parent I obviously was drawn to her account and have found one of the most funniest, loveliest people I have ever met. Both she (@the_unicornmummy_blog) and her husband Andy (@dadblogs2405 and equally lovely) are hilarious Instagrammers whose stories will make you giggle every day.
As today is Disabled Access Day, I asked Bex if she would be interviewed for the blog. Although I am classed as disabled and do often use walking aids, a wheelchair is obviously a completely different thing to navigate and I thought it would be interesting for people to read about how someone parents while needing to use one. Bex, like me, tries to encourage positivity around disability and I think it is so important to have positive role models for disabled people out there, sharing their lives and stories.
Disabled Access Day
Disabled Access Day began in 2015 and is designed to celebrate good access and create opportunities for disabled people to try something new. Often, trying to arrange activities and experiences when you are disabled can take so much extra planning and lead to anxiety and fear.
1) Can you tell us about your condition – what it is and how it affects you?
I have arthrogryposis. Arthrogryposis Multiplex Congenita (AMC) is a term used to describe over 300 conditions that cause multiple curved joints in areas of the body at birth. It varies from person to person with the commonality being stiff joints and muscle weakness. I was born with clubbed feet, which were straightened with operations and calipers. My right wrist is clubbed too. I have no left hip joint which causes me to walk with a limp. I also have a set of my own bum wheels when we go out and about.
2) When did your condition start? When did it become necessary to start using a wheelchair?
I’ve had arthrogryposis since I was born. I’ve always used some form of chair. When I was younger I had a maclaren. As i got older, I wanted more independence, so I got a self propelled wheelchair.
3) How did you find pregnancy with your condition? Were there many extra considerations to think about – eg. coming off certain medications in order to get pregnant?
I hated my pregnancy, the end result was great and worth it, but those 9 months were hell. My huge worry was the painkillers I was on. After talking to my GP though we discussed a plan. I was able to stay on my painkillers (cocodamol 30/500) but towards the end of my pregnancy I had to cut down my dose. Apart from that and losing some weight nothing changed. The one thing I wont miss though was the SPD which I got quite early on. No one can prepare you for what feels like burning hot knives in your foo foo.
4) How did you find the birth? Was it well planned with your team beforehand?
The birth was amazing. I was under a consultant throughout my pregnancy and they couldn’t have been nicer. We discussed every option but because my legs wouldn’t spread as much as they needed to, we went for a planned c-section. If and it’s a big if, we ever have another, I wouldn’t hesitate having another planned c-section.
5) Life with a newborn as a disabled parent! How did you manage? What were the extra challenges you faced due to your health that other parents may not have to worry about?
I was so scared about this bit, not because of what I thought I could do, but what certain other people thought. We adapted really quickly to everything and I was able to work out different ways to do things like carrying Charlie from the floor to the sofa. Going out without being able to use a pram (we used and still do a baby/toddler carrier). The one thing I struggled with was taking Charlie to bed, getting downstairs was fine, I bum shuffled, but the climb up with a newborn terrified me. Luckily Andy was home every bedtime, so we were set.
6) What has been the most challenging time as a parent in regards to your health?
If I’m completely honest, we’ve not found too many challenges apart from going up the stairs. Now he’s a toddler he’s so much easier! Apart from the tantrums. I did suffer quite badly from parental separation anxiety but I bet a shed load of parents do.
7) With regards to disabled access, how do you find places you visit with Charlie like soft play centres and parks?
90% of places are fab and actually really helpful. I took Charlie to a baby massage course on my own at a play centre and all the staff were amazing. They helped me down on the floor, helped get photos and even made sure we got to the car safely together. There’s only a few shops we struggle with, card factory is a nightmare for prams and wheelchairs.
8) How does Andy find access for nappy changing as a male? I often find places have baby changing facilities located in the female bathrooms which can be difficult for people like us.
Andy here! When were out with Bex we just the disabled toilets, but if out on my own I don’t like using the gents to change him, I find somewhere quiet and change him quickly!
9) Has Charlie started asking any questions about your condition? How will you/do you explain it to him?
He’s not really started asking yet. Although we do have my old xrays out which we play with and talk about. He loves playing in my wheelchair too. He’s forever asking to go for a ride in Mummy’s wheelchair.
10) Whats the best thing about being a Mum?
Apart from the tantrums, definitely this stage he’s at now. He’s so funny and I love the fact I have a little shadow. It sounds really cliche but his laugh just makes my day.
11) What one piece (or more) of advice would you give to disabled people worrying about starting a family?
Just don’t overthink things. There’s so many ways to adapt to situations. You’ll soon find your own groove. I’m also a very stubborn, independent person but since Charlie’s arrived I’ve learned it’s ok to ask for help.
I am so grateful to Bex for taking the time to do this with me. I recommend you all follow both her and Andy on Instagram and you can also follow her blog – The Unicorn Mummy. I really love the last piece of advice she gives – is there any other advice you would suggest? Let me know in the comments,