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Parenting a Child With Additional Needs When You Have a Disability Yourself

Parenting with a disability

Kate was advised not to have a child because of her own disability, but the desire to be a mum was burning brightly. Little did Kate and her husband Sean know that they’d embark on a unique parenting journey with some unexpected turns.

 

Parenting a child with health conditions or additional needs is no mean feat – but if you have a disability yourself, your journey can be even more complex . One mama who’s showing the world how it’s done is Kate, a mum of one from Birmingham.

Here, we look at Kate’s story, and find out about life as a mum with rheumatoid arthritis, and with a son who has severe allergies, coeliac disease and alopecia universalis. 

When your disability means you’re told not to start a family

As a child, Kate was diagnosed with a long term, progressive autoimmune disease called rheumatoid arthritis. But when she settled down with her husband Sean in 2004, the thought of having a family became ever-present.

‘When you have rheumatoid arthritis, you have to take lots of medication to keep symptoms under control. Whether it’s chemotherapy to suppress your immune system, or steroids, there are always lots of drugs you need to take just to be able to function.

‘So when we spoke to my rheumatologist about trying for a baby, he told us that not only would it be impossible for me to get pregnant or carry a baby to term, but also that I wouldn’t cope off my medication. In fact, we were even cleared for IVF because the chance of me getting pregnant naturally was so slim’.

‘Motherhood is an important life goal for many women. Just because you’re disabled, doesn’t mean you don’t have the same desires – the same feelings. You know, I have the same life goals as all the able-bodied people out there!’

Being a pregnant mum with disabilities – against all odds

Within three months of trying, Kate and Sean defied the specialist and got the two pink lines they so desperately wanted. Although they were anxious about what the future would hold, the pregnancy was surprisingly easy for Kate.

‘When you’re pregnant, your immune system is less active.’ Kate said. ‘This meant that my rheumatoid arthritis symptoms actually improved – and despite not being on my meds, I actually felt pretty good!

‘I was closely monitored throughout the pregnancy and had a cesarean scheduled due to my false hips and joints, but it really was a happy time. People often asked me how I’d cope – but the truth is, you find a way.

‘On 25th July 2012, our son Isaac was born, and we were truly smitten. After a few days we took him home, and our life as a family began.’

Making things work when you’re a disabled mum

When you become a parent for the first time, making a list of everything you’ll need seems like a rite of passage. But for Kate and Sean, it was a case of working out how things could be utilised to help Kate look after a newborn while managing her own condition too.

‘I try not to see things as “I can’t do this” or “I can’t do that”, it’s all about just trying to work out how you can put things in place to help.’ Kate said.  ‘For example, I knew I’d have difficulty changing nappies, so we got a changing station that was just the right height for me to comfortably change Isaac.’ 

‘We had lots of adaptations and aids that helped me look after Isaac – most of which you probably wouldn’t find on a new baby list, but it worked for us! My family were and are amazing at helping me out on a day-to-day basis, and I can’t thank them enough for all the support they show us.’

Yes I am disabled, but why shouldn’t I have a child? – Coping with other people’s reactions as a disabled parent

Disabled parents often face issues of parental rights, such as the right to raise children, and many say they feel stigmatised by choosing to have a baby. Kate’s experience is testament to this.

‘When I was pregnant, I sometimes felt like health professionals were against me because I dared to have a child when I’m disabled myself. It made me feel like an outsider, which is completely wrong. Why am I any different from anybody else? I’m still human, with the same hopes, dreams, and aspirations.’ Kate said. ‘Disabled parents have as much to offer their children as able-bodied parents, so this stigma really has to end.’

When something’s not quite right – Mama knows best

After settling into family life, it became clear that Isaac was not well. A confusing myriad of symptoms baffled doctors – from sleep problems and eczema, to dermatitis herpetiformis and dramatic weight loss. 

‘It was when Isaac was 14 months that we noticed something was really wrong. He was really skinny but had a huge stomach. No matter what we did, we just couldn’t get him to put on weight.

‘Despite extensive testing, doctors just couldn’t work out what was wrong. At one point, three doctors thought he had cystic fibrosis, but then changed their minds at the last minute. I just knew something wasn’t right, and I fought to get more tests.

‘Eventually, we went to Birmingham Children’s Hospital where Isaac had a gastroscopy and a colonoscopy, which is where they put a camera in to look at the bowels and oesophagus. The results horrified the doctors.’

When a diagnosis comes as a shock and a relief

‘The tests showed that Isaac’s stomach was shredded to pieces and he had a severe case of coeliac disease, as well as multiple other food allergies. It was bittersweet. Finally, we had an answer for all these worrying symptoms, but we were entering a scary world of the unknown.’

‘We then began a new journey – and had to learn on the job about what Isaac could and couldn’t eat. Supermarket trips became a mammoth outing as we read the labels back to front and inside out. But soon, it all became our new normal.’

Just when Kate and Sean thought the trauma had ended, life threw another curveball

Just as life began to settle down for the trio, things took an unexpected turn. Isaac’s hair started falling out – not just the hair on his head, but all of his body hair, eyelashes and eyebrows included. Within just two weeks of his diagnosis of coeliac disease, Isaac was also diagnosed with the rare condition, alopecia universalis. 

Learning to adapt when you parent a child with additional needs

Taking care of a child with complex health needs can be one of the toughest tasks a parent can face. But many parents say that it’s about learning how to best adapt and navigate a new route. 

‘Many parents of children with health conditions or additional needs will tell you that just when you think you’ve taken all you can deal with, you’ll surprise yourself with dealing with a bit more.’ Kate said. ‘That’s not to say it’s not difficult, or that you don’t have times when you feel overwhelmed. But we don’t let my disabilities or Isaac’s health needs get in the way of living our best lives’, she added.

Being a Disabled Mum to a Child With Health Needs

 

Moving forward and enjoying all that life has to offer

Although Isaac still has ongoing health concerns and no hair, he doesn’t let that stop him from being one of the happiest, cheekiest little seven-year-olds you will meet.  What’s more, he’s adaptable and helps Kate in any way he can.

Kate said: ‘There has been a learning curve for me and Isaac. I’ve been learning how to be a mum to a child with complex needs, while Isaac has grown up learning what I can and cannot do. He doesn’t mind when I can’t get down on the floor to play with his lego, but we find other activities that we can enjoy together.’

Now, Isaac has started to manage his own conditions by reading labels and knowing what he can and cannot eat. When faced with bullies at school, he made it his mission to educate his peers about his alopecia.

Kate said: ‘Isaac deals really well with his conditions and takes it on the chin. If anyone ever mentions his lack of hair, he just says “I lost it when I was poorly, but I’m fine now”, and carries on as normal. He really is a credit and an inspiration to us all.’

‘Just because your parenting journey isn’t what you expect, doesn’t mean it can’t be wonderful’

‘Our parenting journey might not be the type you dream of when you think about having a family – but I really wouldn’t change it for the world. I feel blessed every day for everything our family has, and although I have down days, I continue to focus on the positives and making sure we live our best lives’, Kate added.

When you’re about to welcome a baby into the world, there’s no shortage of advice on all things parenting. But when you have a different kind of journey, the typical parenting manuals seem irrelevant. The real support, Kate says, is in finding people who have been through similar experiences and who can identify with you. 

‘Find people that have been through similar experiences and who “get it”.’ Kate advised. ‘Although you might feel alone, there are always people out there just like you, feeling the exact same way. Talk more, support each other and shout out when you need help. There’s no shame in feeling overwhelmed – after all, although people say parents of children with additional needs are superheroes, we’re not, we’re human!’

Do you parent a child with additional needs? 

As rewarding as being a parent can be, there are some times that are really tough – especially when you parent a child with additional needs or a health condition. When things feel like they’re too much, talking to someone you trust can really help. If you don’t have family or friends you can talk to who will understand, joining a social network or community can be a great way to get support and find people going through similar experiences.

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