When I first learned that Miss Z had additional needs, I made a promise to myself. I would not hide my child away.
I would not deny her the opportunity to see the world simply because the world does not always feel comfortable with disability.
In the early days, this was an easy vow to keep. She was a baby. She was small and easy to carry.
Sometimes I strapped her to my chest in a baby carrier. We spent a weekend in Sydney with her in her carrier – visiting the Opera House, the aquarium, the Botanical Gardens, eating in nice restaurants.
Other times, I took her in her stroller. Feeling lonely and isolated in the early days, it was often a relief just to get out of the house and push her around a shopping centre or for a walk in the park.
However, as she has become older, she has become less portable. At four-going-on-five years old and weighing nearly 20kg, the days of carrying her around are gone.
Gone too is the easy to fold up stroller – replaced by a much heavier and more cumbersome special needs model.
But something even more fundamental has changed: Miss Z has become a homebody.
She never seems to feel the need for a change of scenery or even a breath of fresh air. She is quite contented to spend the entire weekend at home with her family. She is happy to go to school.
She tolerates walks in the park (so long as she keeps moving – stopping is not an option). We often go to Sunday brunch at the same café, and she’s generally OK with that, too.
Shopping with her is difficult at best. She hates grocery stores – I think because the chiller cabinets make her cold – and will fuss, grumble and scratch her ears her whole time in the store.
Shopping malls get a similar treatment – she is worse than my husband in demanding we get in and out in record time.
Small shops are nearly impossible as they pose accessibility issues as well as not being well tolerated by Miss Z. She gets frustrated quickly in most restaurants and cafes.
I can’t really blame her for this, since she’s tube fed, and watching other people eat and drink must be fifty shades of boring.
Sometimes I can jolly her through a quick meal by holding her on my lap – although as she grows, this becomes more of a challenge.
Her lack of tolerance for public places means that I haven’t been daring enough to try anything that might push her boundaries, such as taking her to see a movie.
Visits to museums or zoos or similar places tend to be brief, planned well in advance, or involved my husband and I taking turns comforting her, while the other explores with Miss Z’s older sister.
It will come as no surprise that she isn’t much of a party girl, either.
But her preference for home and her obvious dislike of going places poses a conundrum.
I want Miss Z to get out, see the world, and try new things. If we never try anything new, then we will never know if there is something that she might really enjoy.
At school recently, they discovered that Miss Z loves to paint. I didn’t know this because I had never tried to paint with her.
What if there is something out there that Miss Z loves as much as painting – orchestral music or aquariums or movies – that we are missing simply because we haven’t tried it?
The activist in me rails against the idea of keeping Miss Z at home.
After all, how can I expect people not to stare and to become more comfortable around people with additional needs if they don’t see them out in their community?
I want Miss Z to be out and active in her community. But she wants to be at home. And her opinion is important, too.
he faces so many challenges in her daily life, why can’t she be allowed to stay home and relax if that is what she wants?
Why should she be expected to be a flag carrier for the disabled community?
Or endure an assault on her senses, simply because I think she might enjoy watching a movie in the theatre, rather than in the comfort of her own home.
But I hope that don’t give up trying, because on those rare occasions when she surprises us by enjoying something we didn’t expect she would, it is golden.
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