5 Amazing Things I Learned Having A Child With Autism
15 yrs ago I gave birth to my daughter Francesca. I soon learned that she had Down Syndrome, and 12 years later she was dual diagnosed with autism and sensory processing disorder. The discoveries hit me hard at first, and at times I wondered, why me? But as life evolved, Francesca has been the greatest gift to myself and my husband Dave. Here are 5 amazing things I learned having a child with autism...
Lesson 1: When she feels safe, my daughter is the funniest person in the world!
Francesca will listen to the same song 30+ times in a day, and would happily eat veggie sausages and chips for every single meal, because consistency helps her to feel safe. It’s actually pretty rewarding accommodating Francesca’s quirky coping mechanisms (as long as she eats some vegetables in between) because when she feels good, she is cheeky, entertaining and a lot of fun. She loves her dolls, loves playing dress up, and and loves to dance. She’ll sing along to Disney fluff but she’ll also bellow out lyrics to a Rage Against The Machine tune if the mood is right. For all of Francesca’s anxieties (unexpected loud noises, crowds of people, barking dogs, to name a few), she is often one of the bravest teenagers I know. She’ll don a wetsuit and splash around in the cold British sea, laughing her head off, inspiring me to take us on more outdoorsy adventures. Francesca has shown me that if we help each other to feel nurtured, we can all live to our fullest expression.
Lesson 2: To have integrity at all times
Francesca won’t forget a promise made. To her it just doesn’t compute that you would say something you didn’t really mean. She doesn’t feel a drive to conform or people-please, so it’s easy for her to have integrity and radical honesty. She knows what she wants, is strong minded about it, and won’t sugar coat her words. She’s even been known to tell us to “eff off” if we try to manipulate her to do something that doesn’t feel good to her (not sure where she got her potty mouth from…)
Lesson 3: I don’t want to wear uncomfortable clothes either
I don’t have sensory processing disorder, but dressing my daughter who experiences acute SPD made me realise I don’t enjoy having rough seams and care labels against my skin either. I’ve been a tomboy dresser for most of my life, and nearly always opted for comfort when choosing clothes, but I began to notice I’d repressed how much some components of clothing really irritated me too. Francesca highlighted the insanity of walking around in anything but nice feeling clothing!
From my career as a fashion designer I knew what attributes were ideal to make clothing comfortable, but my daughter gave me a whole new insight. I now found I was ordering the same piece of clothing in every colour if it was one of those rare items that felt good to Francesca. I’d cut out care labels and soften seams with a nail file. I’d avoid any manmade fibres as they were often too itchy for her. As people with SPD know, any kind of discernible feeling from clothing can be overwhelming, and even all consuming at times. Fabric needs to feel like it’s hardly there, like it’s just another layer of skin.
When creating Fferal, I designed a full range of sensory friendly clothing. Every garment had to be 100% cotton, roomy in all the right places, with soft flat overlocked seams, and definitely no care labels. The final samples felt great against my skin, but the most crucial test was that Francesca would happily wear any of the clothing and accessories. The hard work creating the perfect sensory clothing range paid off, and she now asks to get straight into her Fferals as soon as she returns home from school!
Lesson 4: That community is everything
There’s some real magic that occurs when you’re pushed to lean on others for support. Before I became a mother I was highly independent and ambitious, travelling the world for my career in fashion. Then came motherhood to a child with special needs, and boom, for the first time in my life, I was vulnerable and had to rely on others for help. Our new little family of three was heading into the world of disability, and I was quickly reassessing everything I thought I knew. (Read more on my personal journey - how the Tsunami, grief, and having our daughter with Down Syndrome changed the course of our lives). I began to fully appreciate the importance of the NHS and our welfare system in the UK, and why community is such a beautiful thing.
We joined meet-ups for parents of children with special needs, and made warm, open and compassionate new friends. We got involved with the very inclusive Woodcraft Folk events, and met inspiring social activists. We were connected with Jodie, a support volunteer, who took care of Francesca to allow us some respite. Jodie and I soon became very close and she is now one of my best friends. We met other families living with Down Syndrome and neurodiversity through Francesca’s special school, and many became our extended family.
My daughter enabled me to meet so many amazing people who I would never have crossed paths with in my previous life. Now I know, I would never have wanted to miss this far richer experience.
Lesson 5: It’s ok to not to feel sociable all the time
If Francesca doesn’t want to be out and about, we will know about it. She will simply stay put in the car. If we eventually manage to persuade her to exit the vehicle she may put her headphones on or pull her hood over her face so she can avoid confronting a busy or noisy environment. Sometimes she will stim - using repetitive behaviour such as humming to help her to cope with an overload of stimulation. There have been many times when we’ve changed our plans because it’s just not a good day for her to be around people.
Francesca has a handful of trusted friends who are nearly always welcome visitors, but being out in a crowd of new faces can feel paralysing. And do you know what I’ve slowly realised? Sometimes it’s ok to just listen to your mind and body when it wants to be quiet. To cancel engagements and just chill. With Francesca we’ve had an excuse not to be at every single social gathering, and it’s something I now feel empowered to do for myself too.
Read more about why I created a sensory friendly clothing range.