TWIYO — The World Is Your Oyster

The world is your oyster — you just have to seize the chances. A reflection just before Hárris’ 9th birthday and why TWIYO was born.

TWIYO — The World Is Your Oyster. The world is at your feet. You are given chances; you only have to grab them. That is what my app stands for.

Just before his 9th birthday, I am reflecting on what has been and how the past year went. I do that at every birthday, really. I always want to say “this year was tough”, because raising a child with a disability is tough by definition. I think most care parents — or rather, family caregivers — would agree.

But now I reread my old blogs and came to a realization: the grief is no longer so overwhelming. The uncertainty that once kept me awake at night is still there — but I can live with it. It is not only tough anymore. Is it acceptance? Getting used to things?

Last week I heard myself tell a friend that I have become a seasoned pitbull for my child, tegen wil en dank. Wow — sometimes you say something aloud and only realize what it means once the words have left your mouth.

Apparently you get used to it, and I have learned a lot. That is it. I now know that everything requires fighting spirit — at least if you want to walk off the beaten track, or, like me, deeply love a child who keeps threatening to fall between the cracks. And I now know I am allowed to be critical, to investigate, to form and voice my opinion. I am allowed to choose a different path than the one presented to me. Over the past years I learned to listen to my intuition. I am getting better at it.

So the past year was still tough, but it also brought new energy. Through word of mouth we borrowed a CloudCuddle and discovered that this bed works like a miracle for Hárris’ sleep. We bought one — and with it came relief in his and our rest, after nearly nine years of bad (BAD!) sleep.

We enjoyed another year of his wonderful day programme, with committed people who did everything to help him grow in independence and development. We let go of formal schooling and chose a small-scale day programme focused on his wellbeing and happiness. A chance that came unexpectedly and that we seized with both hands. After this summer holiday he starts there. Exciting? Yes! But our gut told us we could not let this chance pass.

It is letting go, adjusting, accepting, course-correcting — and, when the moment comes: seizing!

With that energy, the new TWIYO app was born. I put all my knowledge, skills, and especially lived experience into building a tool that gives my own child — and hopefully many other children — a chance to learn to communicate when that is difficult. Not through the beaten, arduous, slow, expensive paths, but low-threshold, affordable, and personal. TWIYO!