Today is international day of people with disabilities. There is so much about living with disabilities, either your own or a family members that doesn’t get spoken about. For people experiencing diagnosis for the first time or living with a diagnosis there is something powerful about knowing you aren’t alone and that someone else has survived. It gives you hope that you will too.
This is my story*.
*I say this is my story but it isn’t. This is my daughter’s story told from my perspective. Her version of the story is hers and she gets to choose who to share it with, when and how so for that reason I wont share her name or the diagnosis. I did ask her permission to share this and I asked her to read it so she could edit it as she wanted. She didn’t delete she added (and my heart very nearly burst!)
My child (C) started walking at 11 months old, by that point I was pregnant with our second child. We didn’t suspect anything was wrong. I mean there had been a child health nurse who called me after an appointment and told me my child was ‘developmentally backwards’. She uses those words. It’s amazing what words stick with you. What a croc. She was not only meeting the milestones of the babies in mothers’ group, but she was also exceeding them. Yes, she was holding toys with one hand, not two but developmentally backwards? (Handy hint to professionals, when you suspect there might be an issue don’t use such emotive and negative words!). She walked at 11 months. She had an unusual walking pattern (gait) and would walk on her toes on one foot. Again, we didn’t think anything of it. Lots of kids had unusual walking styles when they are finding their groove.
I remember the exact day I knew something wasn’t right. Our baby (B) was 6 weeks old, and C was 18 months old. We were sitting on the grass at Hilary’s and my husband was kicking the ball to C and they were running around together as I fed B. It should have been one of those lovely moments. Instead, what stood out to me was that every however often her leg would just buckle, and she would fall over. It was like her ankle just wasn’t strong enough to support her. Right then and there I knew something was wrong. I didn’t know what, but I knew there was something going on. My family brushed off my concerns. C was 18 months old. Some kids still aren’t walking at 18 months, she is just finding her feet.
Then we were at a party at a friend’s house. I can’t remember what we were celebrating but I remember going to their house and the friend telling me about another friend’s baby who had just been diagnosed with a disability and she named the disability. My stomach dropped. I looked at my daughter and I remember thinking ‘oh my god, that’s what she’s got!’ I had grown up with a child with that condition as the brother of a close friend of my brother and he was severely impacted by the disability. That was my only reference point. I felt sick. We had to leave the party.
I told my family my suspicions and again they downplayed my concerns. After my mum said she knew there was something wrong, but she didn’t want to add to my fear, so she denied it. She wanted to protect me and C. What it actually did was isolate me. I didn’t have anyone to share my fears with because everyone denied it was happening. I took C to 3 different doctors before I could get one to take me seriously. One of the doctors, who up until that point I had really respected and gelled well with, said to me ‘there is no evidence of spasticity and that’s what those people are, spastics!’ Yeah, it’s funny the words that stick with you. ‘Those people’ ‘spastics’. FYI the word spastics is banned in our house, it’s the only time I come close to throwing someone out of our home.
Finally, on the 3rd doctor I was able to get someone who would listen to my concerns. He told me I was wrong, but he would give me a referral to a paediatrician to ‘put your mind at ease’. If I wasn’t so grateful to have the referral, I would have been angry at the way he patronised me. Funny how experience changes you. Now I go to the dr and say ‘I have an appointment booked for x, I need a referral’ and they give it to me straight away. Back then I felt I had to ask permission.
The appointment for the paediatrician came quickly. My husband had to work and so my dad came with me. At the time B wasn’t sleeping at all, he was awake 20 hours out of 24 and life was difficult, so we were seeing the paediatrician for him as well. The appointment started with looking at B and reasons for his constant screaming. Part of me was putting off C’s part of the appointment and part of me knew that once we had C’s part, I wouldn’t be able to concentrate on what he was saying about B. Sadly what this meant was that my dad had to leave mid-way through the appointment to get to work. He left just as C’s assessment was starting. It didn’t take long. The dr had C play with some blocks, walk some and a few other bits and pieces and then we sat down, and he told me the words I knew were coming. He gave the diagnosis that I knew but I had been hoping and praying would not come.
It’s almost funny now. I reached over and grabbed the wastepaper basket and vomited into it. Vomiting while holding a very fat babe in arms is no mean feat! Sadly, the wastepaper basket is one of those that is made of wire mesh, and it didn’t have a liner in it. I sat there in a complete fog. Unable to hear anything as I watched the vomit slowly ooze out of the mesh.
From there we were referred to an organisation that at the time specialised in supporting people with this disability. That first appointment they confirmed the diagnosis and told us all the things C would never be able to do. She would never do up her own buttons, never tie her shoelaces, never play a musical instrument, never drive a car. (She has smashed them all!)
If I were interviewing people about their experiences I would ask ‘how did that make you feel?’ the reality is, I didn’t feel. I didn’t feel for years. I became a robot, and I just did. There was no room for feeling. Occasionally I let my guard down and anger, fear and sadness came to visit, but very rarely. I needed to be there to support C and support my family through this.
We told very few people and the time I felt most angry was when a relative told other relatives because ‘they have a right to know’. No, they don’t. It wasn’t your story to tell. We chose to tell very few people because we didn’t want C to be labelled. I knew what my reaction was when I realised her diagnosis and I didn’t want other people to see her only as her diagnosis. I wanted them to see C! I didn’t want other people putting limits on her.
That decision not to tell people was reinforced when I did tell someone and for the first time, I was actually vulnerable, and shared how sad and scared I was. The response (from someone who had not had any similar experiences) was ‘it’s not that bad, at least she isn’t dying. Go walk through the oncology department at PMH and see families with something to actually be upset about. That might help you get some perspective.’ Wow! Here’s the thing, just because others have it worse that us does not make our suffering any less. There will always be someone who is going through something harder, tougher, scarier or more painful, that doesn’t negate what we are going through. Perspective can be useful when you are easing panic over a year 3 NAPLAN test, not so much when you are struggling with something that will impact your child for the rest of their lives! I’m no longer friends with that person.
While I said I didn’t feel for a long time, I hated her diagnosis. I hated that she had to go through so many medical procedures, I hated that things were hard for her. I hated that by age 4 she could check herself into PMH and by age 6 she could recite her hospital ID number. I hated that in order to get support for her I had to (and still have to) become a horrible version of myself. I hate that if we are kind and gentle C gets missed and doesn’t get the services and supports that she needs. Hate is a hard emotion. It does things to you. Then I realised that I love C with every fibre of my being. I love every part of her. I love that she is resilient, I love that she is such a strong advocate for herself, I love that she knows her own mind, I love her humour and her spirit, I love her for who she is. Her diagnosis doesn’t define who she is but it is part of who she is. It is a big part of why she is so resilient and why she is her own advocate and why she is so independent. I can’t love her 100% and hate a part of her (her diagnosis). There isn’t a day that goes by that I don’t wish she didn’t have the diagnosis. There isn’t a day that goes by that I don’t wish things were easier for her. Loving her and loving the diagnosis doesn’t mean I can’t still feel like it isn’t fair, it just means that I love her unconditionally.
So to anyone else who is starting on this journey of parenting a child with a disability I want you to know you aren’t alone. It can be hard and there will be moments when you think ‘I can’t do this’. When you think that, remember you CAN do this. You ARE doing this!
Hi, this is C. The events in this post aren’t things I remember. The stories that stuck with my mum aren’t the ones that stuck with me. A lot of people get their diagnosis and feel like their life is over. It’s not. Now you can start living and working with your body not against it. Now you have a reason for the help you need and language to explain it. My best friend of five years used to mime the mini speech I had to give to every new teacher I had when they all inevitably asked me the exact same questions (Seriously she made it so hard not to laugh as out of the corner of my eye she’s saying it too). If you’ve recently been diagnosed, I know it’s scary and big and traumatic. It’s ok to be upset and to mourn the life you think you should’ve had. It’s ok to be angry or to shut down. I have no memory of life before my diagnosis, and I still do all that.
Eventually though I promise it gets easier. Slowly but surely, you’ll build a new normal. If you don’t have accepting friends get new ones. My best friend preheats her house for me when I go over to her dads house because she knows cold causes me pain (I swear that house has never looked at insulation before in its life). If you’re up to it make friends with other disabled people or join a Facebook group (if you’re not ready for that yet that’s ok too, there’s no right way to do this).
For me a quote that resonates with me and that I think of often is from a book called “A Curse so Dark and Lonely”. It’s a Beauty and the Beast retelling and the main character Harper is disabled. As an army prepares for war, she demands to be taught so she isn’t helpless. She tells her instructor “I was born like this, I will die like this, teach me to work around it!”
That’s my advice, learn to work around it. You can do it, but you might have to make it work for you. Sometimes you might have to fight to get to do it your way, but you are your own expert. Don’t let anyone tell you they know your body better than you do. They don’t. Don’t be ashamed to change things and be ‘abnormal’. I skipped an entire semester of sport and sat with the boys in health because I was in too much pain to do sport, the boys didn’t believe this but took it as a compliment because I chose to hang out with them. And if I’m entirely honest some of the funniest memories from that year came from those boys so it wasn’t exactly a hardship to sit with them.
I don’t know who’s going to read this but for who ever needs to hear this, you can get through this. It’s ok to take your time. Maybe all you can do today to accept your new normal is read this post and I’m proud of you for that. It’s hard to accept that your life is going to be dramatically different. Know that you’re not alone.