We are a family of 4: dad (Dino), mum (Clare), Lexi is 7 years and Summer is 4 1/2 years.
WHERE DO YOU LIVE?
We live in Thornbury, Victoria. We love where we live and feel a huge part of the local community here.
WHAT IS YOUR CHILD’S DIAGNOSIS AND HOW DOES IT AFFECT THEM?
Lexi has quadriplegic cerebral palsy. Intellectually Lexi presents as a typical 7-year-old but her physical disability is significant and she requires full assistance to participate and do everything. We are very lucky that Lexi is verbal and also uses a speech device independently using head switches.
WHAT LED TO HER DIAGNOSIS?
Lexi’s cerebral palsy was caused by a stroke or lack of oxygen in utero, but like hundreds of other children with CP, what caused this is unknown. I had an emergency C section at 37 weeks whilst having a regular check-up due to weak fetal movements. Within 40 minutes of arriving for the routine appointment Lexi was delivered via C section. Her weakness and distress at birth meant she went straight into NICU where she remained for 3 and a half weeks. At day 5, a precautionary MRI was suggested, with concerns that she may have suffered a lack of oxygen in utero. This was devastating and before we had even held her, the MRI showed she had a significant insult/injury to her brain. It was over a week before we were able to kangaroo care/cuddle her, as things were touch and go many times. Lexi progressed well through NICU eventually and by the time we went through the Nursery stage of the Children’s Hospital Lexi was almost fully breastfeeding. It was hard to believe by looking at her that she had just been diagnosed with such a massive brain injury with an unknown future outcome.
IS LEXI IN SCHOOL? HOW IS SHE DOING AND IS SHE SUPPORTED?
Lexi attends our local mainstream primary school and she loves it! As do we. Lexi is now in Grade 1 where she is excelling and keeping up with her peers. She has three full time aides who alternate working with her as she cannot be left unsupervised for more than a few minutes. I like that the school rotates three very dedicated aides so Lexi does not become dependent on just one person; and it challenges her to create new bonds and relationships.
The school is very small and extremely supportive of our whole family. It values and nurtures friendship and inclusion and that shows with the genuine admiration and understanding her peers have for her and them wanting to educate themselves about her disability and how to be as inclusive with her as possible. This also overflows into the other families and social side of school too. Lexi has her speech therapist, OT and physio all visit her at school all working hard to keep the teacher, Lexi and aides up to speed with her speech device, equipment and tech devices which are essential for her participate in the curriculum.
WHAT THERAPIES DOES LEXI DO?
You name it we have done it! From the day Lexi left the hospital ALL my focus and energy went into therapy research for her. It was all I could focus on as naturally I wanted to understand everything
I could about cerebral palsy and to do as much therapy as possible in the early years. It gave me a focus and as Lexi was my first child, I was able to put all by energy into her. I decided that it was best for our family and Lexi to do as much therapy early on to educate ourselves and set her up for the future. I knew that once we got to pre-school and school age we would want the focus to shift to friendships/inclusion and access education.
HOW DO YOU FIT IT ALL IN…?
You either do or you don’t really. You do as much as you can, when you physically can and when you can afford it! It’s important to remember that for our kids just “doing life” is therapy…. Integrating therapy into daily life for kids is the best way, simple things like feeding, holding a book and turning pages, making eye contact, all the way through to riding a bike. Yes, riding a bike. Lexi can’t stand or walk but she can ride a specialised bike. These are all therapy activities that can be done every day with intent and practice and without a paid therapist present.
WHAT CURRENT GOALS DOES LEXI AND YOUR FAMILY HAVE?
We are currently focused on forming real friendships independently. We are so lucky to have a great social and school community of friends, but it’s still something we work on constantly – setting up play dates and social outings both for Lexi’s confidence and to help educate her peers. Since having our second child, Summer, who is now 4, it is really important to us – and extremely challenging – that we nurture both our girls’ needs. Summer is at the age of understanding the difference and not always liking that her sister cannot independently do things or play with her. I find this the hardest thing to manage emotionally.
WHAT ADVICE WOULD YOU SHARE WITH SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY?
Oh this is a hard question……and I am not sure why, however, the best thing we ever did was reach out to online groups and chat with other families in the same situation; talking online with them, getting advice from their similar experiences. I would find myself chatting online for hours every day to other parents. Those connections and words of advice from parents a few years ahead of us on the same journey, are far beyond anything any doctor has ever said to us.
AND WHAT’S THE MOST ANNOYING/ UNHELPFUL/STRANGE ADVICE YOU’VE EVEN BEEN GIVEN?
There are so many things that people, even complete strangers, feel they can say and email me without even knowing our family. The list is quite long and to me it can often feel like a lack of empathy or real understanding. I also passionately dislike the ‘Welcome to Holland’ poem. I know it’s helpful to some people and well-liked by many – I guess you either love it or hate it! To date, however the most unhelpful advice anyone has given me comes as an acronym: “NDIS”!
WHAT DO YOU DO FOR YOU TIME?
I am an artist. When Lexi was born I stopped being creative and closed the doors on my studio as I couldn’t bear being alone with my thoughts for a second. After Summer was born, within the first year I felt myself slipping into a black hole. I knew then I had to get back to my creative self no matter how scary that would be. My incredible partner took a year off work and became the full-time carer for Lexi and I went back into the studio for the first time in almost six years. It was incredible and just what I needed. We are now both still working full-time and it’s been an essential part of healing. Staying social and having a community presence has helped me keep my passion for advocacy for inclusion for my family at the forefront. I am a doer and so having projects, both work and community based, is what drives me.
WHAT ARE YOUR HOPES FOR THE FUTURE?
Inclusion, access and acceptance, for all our children. I want to see so many small but simple changes to take the weight off families living with a loved one with additional needs. I want the caregivers and siblings along with those living with additional needs to feel valued, heard and supported every day in every way.