‘To bond with my baby I had to take back control’ – the reality of being a parent with a disability – Independent.ie

'Mum, don't lift her like that!" my 11- and 9-year-old daughters exclaimed in unison the first time they saw me lift their baby sister, Sadhbh, out of her pram using just one hand.

This was how I lifted both of you, and neither of you ever came to any harm," I shoot back at them with a smile. Their reaction is something my husband, Stefan, and I have been living with since we first became parents. People always have the same reaction when they witness us use what they perceive as unorthodox methods to care for our own children.

This is because Stefan and I have cerebral palsy. We have both had to adapt to life in a different way to individuals who don't live with disability. We have always had to bring a think-outside-the-box approach to parenting. Now, on our third child we have developed safe, fool-proof techniques to adequately care for our newest bundle.

Third time around, I've finally gotten to experience caring for my baby completely independently and on my own terms. I've recently returned to work with Rehab Group after my maternity leave during which time all of Sadhbh's daily needs were met by me, everything from feeding, nappy-changing and dressing, all with the use of just one hand. It's a radical departure from 11 years ago when as an overwhelmed new mum surrounded by six members of maternity staff, I had to independently change and dress my baby before I was allowed take her home. Needless to say, I failed miserably and I was also very aware that no other new mother was being asked to demonstrate their ability to care for their newborn.

When Stefan and I first announced our pregnancy it wasn't long before the initial euphoria at the prospect of starting a family turned to despair. Our happy news was met with a mixture of incredulity and shock by people working both in maternity and disability services.

"You are both disabled and you are having a baby!" was the frequent outraged response we encountered when we began to look into supports prior to the birth. We were made to feel we were the only disabled people in the country about to have a baby and deemed completely incapable of looking after our own child. We discovered that there were absolutely no supports for disabled parents within disability services at the time and any community supports were not suitable for our needs. As a result, most of my first pregnancy, which was supposed to be a happy and exciting time, was a complete haze. I remember feeling really stressed, overwhelmed and my confidence was completely destroyed.

We were referred to an array of services such has occupational health, family resource centres and social work departments, none of which could offer any tangible solutions. In fact, I found myself informing them about adaptive equipment or useful websites I had discovered through my own research. However, we did have the good fortune of being referred to a physiotherapist in the Coombe Maternity Hospital who, by her own admission, hadn't met expectant disabled parents before but was willing to work with us to find alternative techniques for looking after a baby. I also met another disabled parent who restored my faith in my own ability and made me realise this wasn't an insurmountable task.

Despite these interventions, the spectre of child protection loomed large over our first pregnancy so we succumbed to the relentless pressure and hired a live-in nanny to look after the baby shortly after she was born. She was a superb childminder and my house was immaculate, but I bitterly resented her presence in my home. I felt we had been backed into a corner and given no choice when it came to parenting our own child. My role as mother was usurped and all I could do was watch as the nanny fulfilled my maternal role. There seemed to be this collective sigh of relief that this little problem was finally solved without any consideration for the devastating impact that it would have on me, as a new mother, having to watch someone else take care of my child.

As my daughter grew, her bond with her childminder became even stronger. It was nanny she looked for when she was sick or upset. I knew that if I was to ever build a proper relationship with her the dynamic had to change. I had to take back control. To do this, we decided to move her to a creche when she about 15-months-old and our family life thrived. There were plenty of challenges, and I won't deny it was hard at times to keep up with a boisterous toddler. I remember one evening announcing it was time for bed, at which point she grabbed my walking stick and put it in the middle of the kitchen floor where she mistakenly thought I wouldn't be able to reach it. But we succeeded in finding a way around most things, so by the time my second child arrived we were competent and confident enough to look after her with very little support.

We adapted more and more each day. I transported her around the house in her pram. I changed and dressed her on a double bed rather than a changing table so she wouldn't roll off, and I dressed her in babygrows, which made it easier to lift her with one hand. Indeed, the paediatrician who gave Sadhbh her six-week check-up asked us to demonstrate our one-handed lift as she felt it was an excellent technique and would be very beneficial for babies whose necks weren't strengthening as quickly as they should.

Overall, my second pregnancy and subsequent birth was a far more positive experience as we made it very clear that we would not be dictated to, and if we needed help we would get it, but only on our own terms. We also decided to spend some time in South Africa with my in-laws and they proved to be a tremendous help particularly as she got bigger and heavier. However, shortly after returning home our daughter was diagnosed with hip dysplasia and spent a number of months in a hip cast. Unfortunately this meant that many of our care methods were ineffective, so again we had to figure out new ways of doing things.

In 2017, after a decade's wait, Ireland ratified the UN Convention on the Rights of Persons with Disabilities (UNCRPD), Article 23 of which states that it is the right of all persons with disabilities who are of marriageable age to marry and to have a family on the basis of free and full consent of the intending spouses. It also says the state must provide assistance to people with disabilities in relation to child rearing. The National Standards for Safer Better Maternity Services states that maternity services also prohibit discrimination on the grounds of disability, that the physical environments should be suitable for those with physical disabilities and that awareness training should be provided, However, I would strongly question whether our maternity services are any better equipped to meet the needs of disabled parents than they were during my first pregnancy in 2008. It's certainly not been my experience. Yes, efforts have been made to make the buildings accessible, but other items such as maternity cribs are completely inaccessible. During my recent hospital stay, I was completely reliant on the staff to lift and change the baby, although I knew once I got her back home and with my own set-up I'd be well able to manage.

In my opinion, maternity services need to have a conversation with expectant mothers on how best they can support the person during their antenatal visits and hospital stay, as the assumption of incapacity still exists.

Over the years, I have offered advice and support to other parents outlining what worked for us and in recent months I've sought advice from other parents which was really helpful. It would be great to see the development of a peer support network that could offer advice and support to disabled parents at different stages of their children's lives, as well as a support network for the children of disabled parents as they are coming from a different life experience to their peers.

Because people with disabilities aren't traditionally associated with parenting, there can be an assumption of incapacity by maternity services and childcare professionals. There is a lack of education or awareness of the specific needs of expectant disabled mothers. The National Maternity Strategy contains no reference to disabled women as expectant mothers and as a result staff are generally unprepared when they encounter a parent with a disability and go into crisis mode.

Finally, being a parent with a disability is no different to any other parent. Like all parents, we encounter the same challenges juggling work, school, and extracurricular activities. The fact that we are both disabled doesn't generally impact our day-to-day activities. Our home is filled with the same day-to-day madness as any other house with young children. We may have to take it into consideration on occasions such as planning birthday parties, attending functions etc, ensuring that buildings have disabled parking. Of course we meet situations where we are thwarted or frustrated that things don't come as easily. My biggest bugbear is flat-pack and self-assembly, which practically every outdoor toy seems to be and this is where you are reliant on support from family.

Neither I nor my husband have personal assistance and given the long waiting lists, we would be unlikely to receive any if we were to apply. Of course, there are things that we do need help with and as she grows we will need to adapt accordingly, but having two older children to be those extra pairs of hands or legs, if needed, has made our newest baby adventure a little easier. At the end of the day we are just a mam and a dad.

Louise Milicevic is a learning and development administrator for Rehab Group

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'To bond with my baby I had to take back control' - the reality of being a parent with a disability - Independent.ie