The parenting club I never knew I would be signing up for

Parenting a child with a disability is complex. It can be so rewarding; teaching you about life, the things that really matter, and yourself. At the same time, it can also feel scary and isolating.

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It’s funny how many times I catch myself telling others we are ‘pretty lucky’ when it comes to our daughter’s diagnosis. It is usually met with a surprised look or empathetic smile but the reality is, we do feel somewhat lucky when you consider that there are others far worse off.

It took two years for us to realise that our third child had a genetic condition called 22q 11.2 deletion syndrome (or DiGeorge Syndrome). We always knew she was different to our other kids. Her reactions were delayed, her expressions seemed different and she felt floppier than her siblings. I had previously gone to the Paediatrician to raise my concerns but when the missed milestones came over and over again, we were sent off for a genetic blood test. This confirmed that there was something unique about our youngest. She had a deletion or ‘misprint’ on her 22nd chromosome. 

Now we were no strangers to navigating parenting outside the norm. Our eldest was born with a completely unrelated genetic condition called Neurofibromatosis. So we had already been through years of specialist appointments, therapies and navigating the medical system. There are some benefits to having experience in advocating for a child born with a disability. You know what’s needed to get answers and you start building out a network of trusted experts and medical professionals.

The hardest part is navigating a genetic condition like 22q (or Neurofibromatosis for that matter), is that there are often so many variables. It can effect everyone differently, so nobody can truly give you answers that feel satisfactory. You have to connect a lot of dots yourself as you make your way through the long list of medical appointments and supports that get presented to you.

You are faced with, what feels like, learning a new language.

Feeling ‘lucky’ for us in this situation, was when we started to tick off some of the more sinister medical complications associated with 22q. She wasn’t born with a heart condition or complications with her liver and other major organs like others with the syndrome, however, her significant global delays and other medical quirks still impact her greatly.

There are ongoing investigations into her sleep, heart, anxiety, suspected ADHD and she needs regular blood tests (which are near impossible to get due to her anxiety and resistance) and we don’t know how complex her needs will become across the years. Then you start reading things about what might happen longer-term. Will she develop schizophrenia? Will she have bone issues as a result of her low vitamin D and ability to absorb calcium? Will she be able to communicate properly with others? Will she live with us forever?

Regardless of these challenges, I always go back to reminding myself that there are others far worse off.

Somewhere in the middle

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There’s a concept I keep coming back to whenever I think about this or my other kids with their individual needs. That we are somewhere in the middle. Not quite disabled enough to truly feel valid in sharing grief or worry but also not able to navigate life as easily as others.

When you become a parent you dream of what life might look like for your child.
The things they will be interested in, or good at, the little besties they will make or even the likeminded parents you connect with over your children sharing the same interests.

Perhaps I was naive as a first time parent. It never really occurred to me that my kids may not like sport, that dance classes would move too fast, or that something as simple as socialising in the playground would be challenging for them.

I imagined the types of parents we would connect with. Would they be fun at parties and enjoy a wine? Would we have shared interests to make conversations easier during playdates? Instead I was left feeling like nobody could truly relate to my situation.

It’s crazy to think that there are 1 in every 1000-2000 people living with her syndrome, yet I had never heard of it or met another person with the same condition. Medical professionals don’t always seem to have detailed knowledge on it either. It’s like a blanket diagnosis that you then need to work through to establish what it means for your child.

Now I know people have their opinions of Facebook groups and I am the first to say I was never a fan of online mother’s groups or forums. They definitely are a breading ground for strong opinions, divisive comments and negativity which isn’t exactly what you need when you are trying to work out who you are as a parent. 

The exception to this was when I started to explore Facebook groups specific to my child’s diagnosis. I came across many groups that brought together parents and carers of kids living with 22q 11.2 deletion syndrome, and those living with it themselves. Suddenly I realised there was an entire community who did understand. We were all navigating unchartered territory as we tried to make sense of our ’22qties’ and their differences.

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Connecting the dots through community

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Sure there are times where I have needed to scroll past if it feels all too consuming but that is rare. Instead I am constantly reminded that I am not alone in my experiences and my observations and feelings were valid. That there were others just as confused about what this condition means for their child long-term and we can instead offer our own experiences, learnings or simply just reassure each other. 

Becoming part of this group made me realise that my daughter will have access to a community filled with people just like her.

Just recently, I was reading a post on this private Facebook group which was accompanied by a picture of a little 13-year-old girl. It caught my attention because she shares similar facial features to my daughter and I even imagined that she may look a little like her when she is the same age.

This gorgeous picture of a smiling and happy teenage was accompanied by a post from her mum saying how cruel teenagers can be. That her daughter’s friends had distanced themselves from her over the years because she was ‘immature.’ That the only people who came to her birthday party were two girls who were sent by their mums and not of their own accord. This really broke my heart.

Because despite any medical complications, my biggest fear for her has always been this very thing. Acceptance for who she is – and inclusion.

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Navigating my biggest fear

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I try so hard to include my child in everything her siblings do. To give her the same opportunities for success, even when she may have to try a little harder. I speak openly about her challenges, so she doesn’t feel shame. I teach my kids to celebrate what makes them unique and do the same for others. I just really hope that others will do the same for her and embrace her with open arms.

She is currently in her final, repeated, year of kindy and the questions have already started. What language is she speaking? They often ask. It was clear to them that she was different, so they were curious kids of course! The unknowingly exclude her because she isn’t as assertive in the playground. She finds it hard to communicate or know how to join in. She has such an incredibly kind and humourous soul but keeping up with her peers is hard for her. There is social discrepancy in her ability to connect and communicate with others.

I have always hoped that as she grows older, she will flourish. That she will find her voice thanks to intensive speech therapy, and that she will find others with the same kind and humorous soul that she has. That her siblings will be with her at school next year to help her feel safe and that the community will understand how hard it is for her and maybe try a little harder to not exclude her.

The reality is that kids grow older and form their own opinions and judgements. She will very likely be excluded like this gorgeous girl in the photo and she will undoubtably be challenged both socially and academically.

We have done enough of our own research to know that she will very likely She will very likely perform below average academically and that other kids with her condition can start to decline cognitively from year three. We don’t have high expectations when it comes to these things because we have learnt that it’s about finding their own unique interests and letting them shine through that instead.

Above anything academically it’s the social isolation and inclusion that is my biggest worry. I know I’m not alone in this as it’s the same for many other parents who have a child with a disability. Perhaps this is why that Facebook post had me jumping onto my computer to write this.

Final thoughts

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There is no sugar coating it, parenting kids with a disability is hard. You can go from being hopeful one minute, believing you were sent these challenges because ‘you can handle it’ – to wishing things were different and your child didn’t have to try so hard.

It’s weird when people ask if we knew about her syndrome during pregnancy. We didn’t and I personally hate to think what would have happened if we did know and had to make a choice on what do to with that information.

For all of the challenges that come with navigating disability, there is so much growth and learning. We are better people because of what we have been faced with and I know that her siblings are too.

If I can share a lasting thought for anyone reading this, it would be to lead with kindness and teach your kids to do the same.