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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