Things I’ve Learnt As A Parent With EDS

May is here! The warmer weather has arrived, and summer is just around the corner, but May also happens to be EDS and HSD Awareness Month! As promised in my Instagram post at the beginning of the month, I plan to do a few blog posts around EDS Awareness month and how my EDS has affected me, especially as a new parent! I was hoping to have the first of these posts up sooner. However, both Alice and I have been ill, so it’s been somewhat challenging to write up the posts as Alice is extremely clingy when sick, and I’ve been rather tired, no thanks to my asthma! My uncle on my dad’s side also sadly passed away rather unexpectedly, so we’re also dealing with the aftermath of that.

Being a parent with any of the different Ehlers-Danlos Syndromes or HSD is something else! Although I’ll admit, I’m on the more extreme end of how my EDS affects me; my joints dislocate multiple times a day, and the chronic pain is at times unbearable. I also have stretchy and fragile skin, which Alice now has a thing for pinching and pulling – definitely not fun! With this in mind, my hand therapist has worked extremely hard to find splinting methods which work for me to at least protect my thumbs, wrists and hand joints from dislocation. As well as a variety of splints made by my therapist at the hospital, I also use the Aircast wrist splints with thumb spica when playing with Alice as I don’t like to wear my soft casts around her as they’re pretty scratchy on her skin! Unfortunately, my other joints are still dislocating on multiple occasions during the day, especially as Alice is now climbing over me, but I’m slowly working on managing them! 

Another thing I’ve come to realise is that EDS makes doing some tasks so much harder! For example, nappies? Once your little one is more active, forget it and get pull-ups! They’re much easier to get on and off as you can stand little one up to stop them wiggling around and rolling away from you. A little tip if you’re using Pampers like us, you can get free packs by scanning the codes inside the packs of nappies and nappy pants into the Pampers Club App! Another annoying task that’s harder is getting jars and lids off, so I suggest you get a jar and lid opener, or you’re asking for either a subluxation or dislocation of several joints! 

As well as needing different splints when playing and interacting with your little one, you may want to invest in a protective play mat such as the ones that Munchkin And Bear do. We got ours as it’s made of memory foam and protects Alice from bumps whilst giving me some more joint protection! The mat is also highly durable, and I can easily roll over it in my wheelchair. When it comes to cleaning the play mat, we use Clenill wipes at the beginning and end of each day, plus whenever there are little messes made! Another perk of these mats is that they’re double-sided, so you can change up your space’s design with the flip of the mat! 

Other things I’ve learned are more to do with being a wheelchair user and a parent. For example, I knew that feeding would be hard as I couldn’t get close enough to high chairs. Luckily, doing baby-led weaning with Alice has paid off big time! Not only does Alice adore food, but it’s also meant I haven’t had any high-chair fights! So instead, I use the Mamas And Papas snug seat on the dining table with the activity tray detached for mealtimes. As we all eat together and Alice is never left alone, it’s a pretty safe method for us, especially as I can get under the table with my wheelchair! 

Another thing is that trying to go anywhere with both a pushchair and a wheelchair is very difficult to do independently! But, thanks to a lot of practice, I can push Alice and myself on flat ground if my joints are having a good moment. However, uneven ground or bad joint moments are a no-go! This is also why I’m hoping to be able to either get an electric wheelchair or a power attachment soon so that I can do more things with Alice independently. This is especially important now as once I’ve got a car sorted, I’ll finally be driving again! However, the only reason I can do things with Alice outside of the house is because of the pushchair we brought, which I’ll be doing a whole blog post on. I’m aiming for that to be out later this week, so keep an eye out! 

Do you have EDS or HSD? What did you learn on your parenting journey? Comment below or on our TikTok video/Instagram reel which shows some of the products I’ve mentioned in this post!

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Five Things That Really Get To Me As A Disabled Mum-To-Be!

It’s no secret that I’m disabled. The very fact that I’m a wheelchair user tells the world straight away that I have something wrong with me. It also seems to invite some rather horrible, intrusive and frankly unwarranted assumptions or comments about my ability to parent or just about my life in general. Since beginning to announce my pregnancy, I’ve had many, quite frankly, nasty unfounded comments and assumptions made about me, but here are 5 of the ones that truly get to me.

Number 1: Assuming I was born disabled

Let’s get one thing clear – I wasn’t born disabled! I became a wheelchair user at 18 because of a condition I never knew I had until it was too late. My childhood was active; I travelled a lot and was very sporty, but I also had a lot of niggles and injuries, and I suppose rather clumsy. As a child, I had backaches which got worse as I grew, and I would roll my ankles, dislocate my knees, thumbs, and god knows what else without any actual cause – or so we thought! My pain got put down to growing pain, and I would be regularly accused of putting on injuries as my joints would often be back in place by the time we got to the hospital. That all changed when my gran had enough of us being brushed off and took me to the GP when I started getting numbness in my legs, worsening back pain, and she couldn’t feel the bottom of my spine just days before Christmas 2014! I was quickly diagnosed with spondylolisthesis; essentially, my vertebrae have never fused correctly and, as such, have slipped out of position. ‘Not just a bad back, but a broken one that needs surgery’ my GP told my gran, who’d taken the phone off of me in the car park of Homebase after I burst into tears on hearing my x-ray results in January 2015. Quickly things got worse from there, and within weeks of turning 18, I’d ended up a full-time wheelchair user, having lost the use of my legs, amongst other things. A few months after, we then received an explanation for the ‘clumsiness’ I had as a child as I was informed that I had Ehlers-Danlos syndrome – a connective tissue disorder.

Number 2: Assuming I don’t work

I don’t know what it is with society, but when you’re disabled, many people seem to think you’re a burden on society, unable to do anything for yourself. I’ve had many comments relating to how people think I sponge off the taxpayer (I don’t.) But the way I’ve dealt with it, especially since having the blog, is to hand those people one of my business cards with my main travel and lifestyle blog from which I make an income! The look of shock on peoples faces is always priceless. But it gets to me because society still doesn’t understand that disabled people have so much to give and so much talent. With suitable adaptations, we can live as much of a fulfilling life as anyone else! This is also something that has come up a lot since announcing my pregnancy because people seem to assume that if you’re disabled, not able to work etc., then you can’t possibly be a good parent – wrong. You can!

Number 3: Being called an inspiration

Whether it’s when people hear of how I set up a travel blog that saw me named on the list of the most influential disabled people in Great Britain, how I can fly an adapted plane, to being a world record holder, a disabled mum-to-be, or just seeing me out and about going about my daily life, one thing I can’t stand is being called an ‘inspiration’. The whole idea of ‘inspiration porn’ frankly disgusts me, and when people comment I’m an ‘inspiration’ for simply living my best possible life, I honestly don’t know what to say to them! In most cases, I know that people mean well, but if they understood for one minute why it makes disabled people uncomfortable to be called ‘inspirational’ purely for going about their lives, you can almost guarantee that they’d stop the comments.

Number 4: Being ignored or someone assuming I can’t do something

Firstly it’s my legs that don’t work, not my brain! Honestly, though, I think this is another bane of many disabled people – being ignored! Whenever I’m with someone else, if someone has a question, they’ll ask whoever is with me and not me – assuming I can’t speak in the process. Thankfully, I have some fantastic people around me who will happily point out to people that if they want to know something about me, ask me directly! Many times, Alex and I have been out, and someones asked Alex a question about me, only for him to tell them to ask me myself because in his words, ‘it’s Steph’s legs that don’t work!’

The other assumption that gets to me? Assuming I can’t do something myself. Almost every time I’m out in public, someone has the urge to come along and touch my chair without asking! Firstly, it’s plain rude. My wheelchair is an extension of my personal space; you wouldn’t touch a stranger without asking, so don’t push someone’s wheelchair without asking! It’s also extremely dangerous; I’ve almost been pushed out of my chair on several occasions by people who have unexpectedly pushed my chair whilst sitting in it. If you think you can help, whether that’s to reach for something, help someone up a hill etc. Just ask! We’d rather you asked us first, than assume you can do x, y and z for us!

Number 5: Assuming I won’t be a good parent/my child will end up caring for me etc.

I’m leaving the worst until last, but I cannot tell you enough how much this angers me! In the previous 4 months, I’ve had every comment and assumption under the sun, from ‘you’ll need help looking after your child’ to ‘your child will be your carer and have no childhood’ right up to ‘you shouldn’t be a mum.’ Yes, I’ve had that last comment more times than I care to count. The truth is, with the right adaptations and planning, there is no reason why I won’t be as good as any other parent! Yes, we’ve had to plan and start looking at things earlier – at 19 weeks pregnant, I’ve already gotten the pushchair I’ll be using and started to use it with my 2-year-old brother when he visits that I can get used to it. We already know a bedside crib will work better than a mosses basket and that there are options other than getting a changing table. The ‘you shouldn’t be a mum’ comment hurts when it comes from strangers, but it ripped me apart when it came from a family member. See, the thing is, my gran brought me up because my mum herself is disabled. The difference between my mum and me? No adaptation in the world could’ve helped her. She has double cortex syndrome and a whole host of problems that it caused, amongst other things. The comment caused me to ask the family member in question if they think my mum should’ve had me. Heartbreaking to ask, but a question I felt was necessary since they were so intent on questioning my wish to become a parent.

If anything, I genuinely believe that as long as our child grows up as healthy as possible, is happy, well-mannered and well-rounded, then Alex and I will have done a fantastic job at being their parents. The beauty of our child having us as parents? The fact that they’ll be raised in a loving, inclusive environment where they’ll be loved and cherished no matter what, and that beats everything.