I’m very much a researcher, an adapter, a think ahead kind of person, and that also applies to my role as a Mum. In every single problem my disability causes I automatically think outside the box and find a way to do whatever it is I’m struggling with.Yes it’ll be different, maybe a bit unorthodox but hey, if it enables me to go beyond my limitations when it comes to the girls, I’ll try said idea at least once. What have I got to lose? If I get an idea that’ll problem solve in my head and I don’t try, you blink and your kids grow up and I’d be left wondering if I could of been more involved in this or that if I’d only tried to do it by doing x, y, z…. You catch my drift?
But I’m also a realist…
And this is where the hardest part of parenting for me comes to light. As much as I do things differently, get creative, do my research, use products on the market to enable me etc… There are still some things that I cannot adapt enough for me to do independently with my children. That is SUCH a bitter pill to swallow.
In the early days of being a first-time parent I was very sure of myself. That I’d find a way around everything bar lifting my baby once they got past 8-10lbs. I didn’t appreciate when I was pregnant, while conjuring up all these “adapt and overcome” ideas, just how many tasks involved needing to lift the baby. You’re told that all newborns do is eat, sleep, poo and repeat. Yes, that’s what THEY do but YOU’VE got to move them from different places in order to care for them. People would suggest a moses basket on wheels etc, but that didn’t solve the problem of getting baby in and out of it. You cannot simply lay a baby in a cot and try and do every one of their care needs while they remain in it. Sure, you can change their clothes and nappy in their cot as opposed to moving them to a separate changing area… but it isn’t good for a baby to remain in one position too long. You’ve got to think about their comfort. Babies don’t just cry when they’re hungry or need changed. They cry because they’re sore from being lay on their back too long, are too hot/cold or need to just be held to feel comforted and secure.
|(IMAGE: Clipart of a baby’s nursery. Mum has her head in her hands crying next to the cot. Rain clouds above and in toy letters on the shelf read “Help”)|
When I was realising all these things, there was this painful moment when it dawned on me… Say I was alone and my baby was crying in the cot. How horrible was it going to be emotionally to sit next to my own baby, shushing and trying to figure out what’s wrong while knowing full well I couldn’t simply pick her up, hold her close and bob her up and down like most Mums would do as second nature. I’d need to comfort a baby without being able to pick her up.If I couldn’t meet my baby’s most basic need of being picked up and held, what sort of Mother would I be?? It really took me to a dark place. Every baby needs and deserves that special physical contact with their parent. And I wouldn’t be able to provide that (alone) after they were a few months old. How horrendous and confusing was it going to be for my sweet baby to have all my love and cuddles for the first month or two of their life, only for one day to cry and wonder why I wasn’t whisking in to scoop her up anymore. I imagined my precious baby feeling confused, rejected and suffering, the thought almost broke me.
|(IMAGE: A silhouette of a pregnant woman, inside are words of all kinds of worries a Mum-to-be has going through their mind)|
I had to pull myself together, at least I was realising the potential situation during pregnancy and not as it was happening. That’d be far worse. So I had a long, hard talk with my adaptable, positive, can concur ANYTHING self and decided that this wasn’t about ME. Or MY disability. As soon as my daughter was born, she and her needs are my number 1 priority. As proud as I am and fiercely independent, I was not going to let my stupid pride to do it all myself somehow, cause my child unnecessary suffering.
So I did the hardest thing. I rang my Social Worker and explained I not only needed in-home support for me (at the time I was switching from social care support to Direct Payments anyway), for my needs I couldn’t meet due to my muscle wasting disease but it would be a safety issue, if I did not have support from another person with my baby. I knew in my head, my sensible self told me even being alone with my own child was a risk. If I couldn’t lift my baby, I couldn’t get her out the house if it was burning down. It was horrible acknowledging this, never mind explaining and asking for help via Social Services.
Getting help with Abbigail wasn’t easy. Social Services refused to set up help until baby was actually here, which to me seemed crazy. We all were aware she’d be at risk, but due to ZERO protocols on what to do with/how to assist a “disabled” parent they wanted to wait and see me struggle before giving me funding for what was termed as “supportive parenting.” It didn’t help that my Social Worker had never had a case with a disabled parent before and just couldn’t understand what I was even asking for initially. As if the situation wasn’t hard enough, I literally had to spell out that I needed my PA (Personal Assistant) to lift and move baby to where I needed her to be, to do her cares. E.g Abbigail needed a bottle and was crying in her cot, I’d need said PA to pick her up and prop her in my arms so I could feed her. Or if she needed her nappy changed, I’d need the PA to place her on the adapted changing table, back off while I changed her then put her on her playmat on the floor/or in my arms while I tilted back in my powerchair for cuddles. Not for them to look after her for me, but to be my strength, just to lift her. I found ways around absolutely EVERYTHING else but that.
|(IMAGE: Famous artist and disabled parent, Alison Lapper sat with her son Parys on the grass on a sunny day)|
In late pregnancy I did a lot of research into parenting with a disability and came across Alison Lapper. She is a famous foot and mouth painter (paints by putting the paint brush in her mouth or between her toes), as she was born with Phocomelia and has no arms and her feet are more or less attached to her hips. She’s a career woman, drives her own adapted vehicle and most invaluable to me, was granted funding for PAs for “supportive parenting.” Once I read about her, that was it, I knew if Alison made it work and had way more limitations than me then I could too. I showed the article to my Social Worker about how her PAs are allowed to support her in parenting tasks aswell as her own care needs. When Abbie was a month old, I was granted 12hrs a day support.
Finding the right people who could meet my level of care needs e.g hoisting, bathing, toileting and could also support me with Abbigail was tough. Some agency carers thought they had a right to tell me it’d be easier if I had a nanny, or it was a selfish decision to have continued with the pregnancy and even butt in on my parenting techniques on the things I needed NO help doing. That’s when I did away with agencies. I needed the same people in and out our lives, for Abbigail’s sake mainly and I needed someone who believed that disabled people should have equal rights and opportunities, including in choosing to have children. Once I was interviewing and hiring myself, I managed to establish a good support team, we got into a routine and for those 12hrs a day I felt we were both happy and most importantly safe.
|(IMAGE: Propped on the sofa feeding Abbie at 2 months)|
I learnt very quickly after Abbie was born that if she was too worked up to wait an age for me to dress her, in that sort of scenario it was in my daughters best interests to ask my PA or a relative help me so it was quicker, and less traumatic for her. For the most part I met all her needs, except lifting her. I had to learn to not feel awkward kissing my daughter goodnight while someone else held her up to me to do that and place her in her cot. To sing to her while someone else was in earshot and try not to let it get to me that I, her Mum wasn’t allowed really to be left alone with her. It took a-lot to let go of what I can’t do with my girls.
As they grew, taking them out required a PA too. They’d push the pram and people would come and coo over what they assumed was my PAs child(ren). Let’s not sugar coat it, even in 2017, society still doesn’t think people with disabilities do things like have babies! My PAs were always quick to correct people, but it still stung. When we go to soft play, I’m not the one climbing in the ball pits and in the tunnels with them, their nan/aunt/uncle or my PA is, while I sit and watch. At first I found going out and being even more reliant on someone able bodied very difficult. I’m away from all the gadgets and adapted things I thought up that are at home. Making me feel a bit lost and inadequate. Public baby changing areas aren’t wheelchair friendly as just one example. I’d try hard to hold back tears, particularly seeing my PA playing with them in places inaccessible to me.
|(IMAGE: Quote from paragraph below)|
In time I snapped out of it, I didn’t want to be sad seeing my children grow and make memories. If the place wasn’t very wheelchair friendly, we still went because my kids deserve a normal childhood. And yes, I’m the crazy Mum on the sidelines taking a million pictures of them laughing, having fun. I saw the stares from other parents less and less as my girls yell “MUMMY, I’M UP HERE MUMMY!” from the top of the climbing frame and I wave frantically, praising them emensely and those parents gawp in realisation those are MY sweet girls. Suddenly a new sense of pride came over me, firstly pride for the wonderful individuals I’m blessed to be raising (whether it be supported or not! It isn’t relevant) but I am also proud of myself for leading an active life with them despite my limitations. I never dreamed such words would come out my mouth. My girls are very attached to me thanks to a combination of me doing whatever I can for and with them or if I can’t…I have the support. They don’t forget me on the sidelines like I feared they would. They don’t accidentally call our regular PAs
“Mummy” or anything like that. They know who their Mum is.
|(IMAGE: Collage of me out with the girls including the school run)|
When I’m waiting at the school gates with my PA, Abbigail comes running to me for a hug and holds my hand home and when we pick Ava up from nursery, she spots me right away and makes a bee line for me to climb up into my lap for cuddles. My PA actually struggles to get her to go into the pram to walk home which is funny in a way, sometimes we just buckle her on my lap and we do like in the book “Mama Zooms!”
|(IMAGE: Book titled “Mama Zooms!” by Jane Cowen-Fletcher. About a Mum in a wheelchair who pretends with her children as they zoom around on her lap)|
At the time of writing this, Abbie is now 5 and Ava is 2. Although we’ve moved around a lot trying to find the right home for us and my support has been subject to many a cut in funding thanks to our new Tory led government. We are doing just fine. Now Abbigail is older, she enables me to help her by getting in the right position for me to reach her, homeworks a breeze and the worry over not being able to lift her is long gone. I still receive some hours for “supportive parenting” for my youngest Ava, as she’s only still a toddler and together we are slowly learning how to work together to get stuff done. Just like her big sister, she’s naturally adapting to my limitations e.g by climbing up on me for cuddles rather than asking to be lifted. It’s a nice age but does present its challenges when she decides to have a meltdown in public and I do the wait it out method, while parents pretend like they’re not staring wondering why I’m not bending over, and throwing her over my shoulder to make a quick get away. But EVERY parent goes through those sort of dilemmas! Being disabled definitely forces you to ride out your kids tantrums and discipline differently. I practice A LOT and I mean A LOT of patience with my girls, distraction techniques to keep them moving and focused, rewards and if all else fails… bribery! I’m not afraid to admit I bribe my kids sometimes, able parents do after all. I do try not to unless the situation is getting out of control, it’s my trump card to always have something on me to coax them with. For the most part though, they are amazing compared to some kids and that’s probably partly because THEY’VE had to learn patience with me too and we practice far more “talking things out” than your average family. Which I think will help with my overall bond with them, especially as teenagers. I hope they feel they can come a talk to me about anything and everything.
It’s rare now, but sometimes I do go back to that dark place I was in in the beginning but now I’m well practised at this parenting from a wheelchair malarkey, I’m definitely more confident with how to parent differently and in which areas. I learnt there’s no shame in asking for help. My children will always come first. So, I can’t physically lift them? I’ve got a list as long as the English Channel on what I CAN do with my children and that’s what I’m going to focus on.