Who We Are
I’m Tania and I’m a woven wrap enthusiast and blogger. I have hypermobile Ehlers Danlos syndrome, postural orthostatic tachycardia syndrome, basilar type migraine and a number of other related conditions. My mobility reduced significantly when I came off my medication to safely try to conceive and I needed to use crutches and a wheelchair to move around. My health declined further during pregnancy. Significant joint instability, pain, fatigue and a high heart rate meant that I was housebound or bed-bound and needed to use my wheelchair to safely move around. Our strategy while preparing for parenthood was to plan for the worst and hope for the best. Since pregnancy, my mobility has improved. However, I still need to use my wheelchair on a daily basis. Unfortunately, a shoulder injury has meant that I’m no longer able to use my crutches.
I’m Jenni and I am one of the Directors of It’s A Sling Thing. I have had Myalgic Encephalopathy since I was 12 and at my worst have had periods of being housebound or bed-bound. I have had periods as a wheelchair user, or using a walking frame to get around if I left my house. When I was pregnant with my first child I had very limited mobility and was in a lot of pain. I also had frequent ‘falls’, well, actually I used to tip over. We were preparing to parent on the basis of my level of wellbeing in pregnancy, and assuming I would, if anything, get slightly worse. As it happened I had a remission and have, in general, had a higher level of mobility since having my children, although I still manage my energy levels and fluctuations in my condition on a daily basis.
Becoming a Parent
Becoming a parent, whether for the first time or not, is a step into the unknown. There are so many things to consider and plan for. For parents-to-be with a disability, there are even more things that need to be thought about to ensure that the whole family are happy, healthy and thriving.
It’s worth remembering that each family’s needs will be different, depending on the disability they live with, the support they have available to them (friends, family and/or professionals) and how they want to raise their child(ren).
How Will You Get Around Together?
Tania – getting around outside the home
This may sound very basic, but when preparing for parenthood with a disability, it’s important to consider how you’ll move around safely with your baby. A wide variety of disabilities and medical conditions make moving around challenging. And that’s without having a baby with you! So it’s important to consider the different ways you might safely navigate your home and social environments with a baby.
Slings can be an important part of this for many disabled people. As a wheelchair user, I need both hands free to be able to move my chair. Babywearing allows me to hold my daughter and move around safely and independently. In my local area, it wouldn’t be safe to have a pram attachment made for my wheelchair. There are tall fences blocking my view of the roads and uneven pavements to navigate. Plus, I find it hard enough to push a wheelchair trolley round the smooth, flat floor of a supermarket!
But, it’s not just wheelchair users who need to have their hands available for aids. Those who have a guide or service dog, people with crutches and white cane users, will likely need at least one hand for their aid(s). Babywearing makes this possible!
Jenni – getting around inside the home
When I was first preparing to parent I was a wheelchair user or needed to use a walking frame on a good day, when leaving the house. A lot of the time I was unable to leave the house. Around the home I moved around by holding onto banisters on both sides of the stairs, grabbing furniture to keep me upright in my frequent “tipping” episodes. This continued through pregnancy and I realised pretty quickly that I was going to need some way to be hands free whilst moving a baby around the house.
I was given a second hand stretchy wrap, and was also given a preloved sturdy (read heavy) pushchair. The heaviness of the pushchair meant that I could put quite a lot of my weight through the handle without it tipping, and we hoped it might act as a walking aid. This was an OK theory, except that most walking aids are designed so that the handles allow your shoulders to be in a comfy position, not somewhere around your ears, and they tend not to weigh about 20kg without a baby in them! The stretchy wrap, however, was a total revelation. At first I looked at it with total suspicion, but when the mum who had not used it for ten years managed to put it on in a moment I knew I would be able to learn it. So I did. Sorted. Around the house I would tie my little one on and we would move around safe and hands-free.
One consideration is often about moving you and your baby between levels and surfaces. Not necessarily between floor of a house, but where do you change your baby? On the floor- how will parent and child get down to the floor? How will they get back up again? On a changing table? Is the height of the table based on a person of average height being in a standing position? Often “normal” parenting products assume a lot about our size, shape and abilities, that may not suit all abled people, let alone people whose needs differ. “Adaptive” parenting products tend to come with the price tag that you might expect to find on premium items, but this may not be in line with the budget you have available for a changing table, or pushchair. Make do or amend are often options…having someone cut a foot off a changing table (totally invalidating any warranty in the process! Or, my solution was, when I was struggling to manoeuvre, change nappy on the floor, and put baby into a sling, and then use my free hands to pull/push myself up again!
We live in a 3 story house. When we moved in, we had no idea that I had hypermobile Ehlers Danlos syndrome, let alone that I might need to use a wheelchair! When planning for parenthood, we knew that I wouldn’t be able to simply go upstairs to the nursery every time our baby needed changing. So my husband put together three changing baskets – one for each floor. They contained all the essentials for nappy changing, as well as other useful items like a muslins and changes of clothes (for both of us – Elise has cow’s milk protein allergy and we regularly went through three changes of clothes in a day!). This was instrumental in allowing me to change nappies independently.
Responding to yours and your baby’s needs
Jenni – when living with a chronic condition can be a positive
Living with a chronic medical condition that fluctuated meant that my life involved responding to the circumstances my body presented me with on a daily basis. I didn’t know from one day to the next how well I would be or how much I might be able to manage. This was actually a really positive thing for me when it came to parenting. I was used to taking each day as it comes, I was used to responding to the needs that my body was presenting me with, and so it meant that it wasn’t a huge mental shift to accommodate and respond to the needs of a baby. Yes, it was challenging to meet both of ours needs, but I didn’t have a life I was in control of or that followed a fixed routine, and in this way I was much better prepared for the realities of parenting a newborn than many of the other people I knew having a baby at the same time.
Will You Need Specialist Equipment?
While coming off medication to safely try to conceive, my mobility declined.
One of the problems we anticipated was how I was going to be able to get out of the house independently with our daughter. I have a manual wheelchair, as a powered chair wouldn’t fit into the boot of a standard car. However, I struggled to self-propel myself on anything other than a smooth, flat surface. So, we fund-raised for a power add-on, which has allowed me to do ‘normal’ things, like take Elise to have her injections and attend local baby groups. It’s also allowed us to do some really special things, like volunteer with the sling library in one of the local(ish) cities.
Initially we went for the usual sleeping arrangements, the NHS advised Moses basket/cot in your bedroom. So we attempted to put Jacob down in a basket for several weeks. However, I was not able to get him in and out of the basket from in bed, and the basket was on my side of the bed, so I wasn’t easily able to get in and out of bed, so for every waking and feed, my husband had to get out of bed, walk around, pick him up, hand him to me, then when he was settled I had to wake Andy again, hand him back over, and he would take Jacob back and attempt to transfer him to his basket. You can imagine how often that resulted in a re-awoken baby, can’t you?!
In the end we researched safe bed-sharing. Andy, who sleeps more heavily, moved into the spare room, I moved to just blankets on the bed and just a mattress on the floor (which actually helped me with getting in and out of bed, as my bed was a bit high and I always had to clamber onto it!). My medication wasn’t an issue, but it is definitely important to check to ensure that your medication does not make you unresponsive or sleep very deeply. I was able to breastfeed all night, get sleep, and we didn’t have to move Jacob about. Everyone was better rested.
Everyone’s perception of normality is different. Everyone finds some things more or less of a struggle, this is true of all parents, all people. People parenting with ongoing conditions or disabilities may be more used to planning strategies for coping with changes in circumstances, such as adding a child into the family mix.
This blog is not a how to guide, it is a collection of our insights on how our conditions and disabilities affected our planning for and transition to parenthood. Your experiences will be different, but our insights may strike a chord. And so might your insights. If you would like us to add your experience to this article, whether a struggle or a strategy, a consideration most parents don’t have to make or a way you adapted to your new role let us know and we can add to this article to make it include the diversity of our experiences. You can message us on Facebook or Instagram, or email us at email@example.com
If you would like to have further advice, you can book a consultation with us! We offer both phone and video consultations, and 15 minutes on the phone is free! You can book directly here or drop us a message and we can arrange a time which suits you.