Just The Beginning

Late in 2017, we received an ecstatic call from the manager of our partner charity, UpsideDowns, letting us know that they were about to clear their waitlist, in part thanks to the regular 1% donations that were flowing in. That meant eleven more kids would get their speech language therapy funded all the way up until the age of eighteen.

We caught up with one of those kids, five-year-old Eduard Simonlehner (Edi), to find out just how much that really means.

Words by Sarah Paterson-Hamlin, UpsideDowns Operations Manager

 

For the Simonlehner family, it’s a big commitment to drive out from their home halfway along the winding Paekakariki Hill Road to Raumati every single week for speech language therapy sessions, but for Edi’s Mum, Andrea, and his Dad, Karl, it’s worth every moment.

“You have to make it work somehow, because we’ve seen the difference it makes… Speech is the main thing, it’s huge. It impacts on everything in a way that you don’t realise if you have that speech.”

Edi faces a harder road to communication than his big brother, Gene (10). Speech intelligibility is one of the biggest challenges for people with Down syndrome. In Edi’s case this is compounded by a diagnosis of verbal dyspraxia, a condition which affects approximately 15% of children with Down syndrome.

“With Gene, everything happened automatically and you didn’t have to think about it,” Andrea explains. “All of a sudden [with Edi] you have to think about it and you learn so much more and you think, ‘Gosh it would have been really great to have this knowledge for Gene!’ It’s quite amazing really.”

Both Gene and Edi are friendly, social boys, and are happy to leave their games to join in our conversation. Overhearing us talking about how much he enjoys his speech language therapy, Edi runs off and comes back armed with flash cards his therapist has given him to practise with.

“You haven’t got enough time to use them as often as he wants you to – he loves them!” Karl remarks, and Andrea agrees, “This is what he does, he picks up what we’re talking about and engages.”

The Simonlehners knew that when it came to Edi’s fifth birthday party, the celebrations would have to befit the son they describe as a “social butterfly”. In the end, they had to hold two parties on the same day to accommodate the close friendships Edi has already nurtured during his early years.

“Just before Christmas is a crazy time of year, so in the end we had two different parties, one for one group and one for the other group because otherwise it wouldn’t have worked out and it wouldn’t have been like a fifth birthday party. His favourite food is pizza so we had pizza for lunch and pizza for dinner!”

Of course, turning five also means the huge step of starting school. When I spoke to the family, Edi had just completed his first week at Paramata school, where his big brother is also a student. The school has worked in tandem with Edi’s speech therapist and teacher aide to make sure that this important transition is a smooth one. Starting school is a reminder of the importance of being able to communicate.

“Speech is SO important because without it you can get behaviour problems as well. So we’re really focussing on that because of interactions at school.”

Andrea and Karl were worried about Edi fitting in, but after only a week he’s made a whole bunch of new friends.

“It’s incredible when you go there and the other children say ‘Hi Eddie’s Mum!’ and I’m like, ‘Who’s that?’ then another one comes up, ‘Hi Eddie’s Mum!’, then the next one.”

Gene is also helping to smooth the way for his little brother, even if sometimes the story is quite different at home!

“At school Gene makes sure he’s ok and sits with him at lunch because it takes him so much longer,” explains Andrea. “He sits there with the teacher aide which is amazing because the teachers will get to know Edi so much better with Gene there because Gene understands what Edi is trying to say. I didn’t expect him to do that!”

Edi has only been at school for one week, but already Karl and Andrea can see a tangible difference in his speech and language thanks to the work his speech therapist, the school, and Edi’s whānau and community have put into the process.

“Even in this first week he’s trying more words. For someone off the street it might not be noticeable, but to us he sounds much clearer. He absolutely loves it. He soaks everything up, it’s great!”

The Simonlehners were taken off the UpsideDowns waitlist in September which means that UpsideDowns has committed to funding Edi’s speech language therapy until he’s eighteen. Verbal dyspraxia and the difficulties with speech associated with Down syndrome will be lifelong challenges for Edi, but it is Andrea and Karl’s dream that with weekly speech therapy sessions he will be able to communicate clearly and effortlessly by the time he reaches adulthood.

“We’ll play it by ear but we are hopeful. It’s fantastic that something like UpsideDowns exists, because we know that speech is one of the main things these children [with Down syndrome] need to be a part of society.”

Edi’s first week of school hasn’t just gone well, he’s flourished at every turn, enthusiastically joining in the Christmas activities (“he loves Christmas!”), making new friends, forging a new kind of relationship with his brother, and engaging with his teacher, teacher aide, and speech language therapist. It’s clear that with his family’s dedication, his natural love of learning, and the support of these specialist services, Edi has a bright future ahead of him. Turning five is just the beginning!

To all of our 1% donors – thank you from the bottom of our hearts. 1% provides our only regular and reliable funding, making it possible to commit to Edi and kids like him for the long-term. Arohanui.

 

Words by Sarah Paterson-Hamlin, UpsideDowns Operations Manager.
Photos by Sarah Macdonald of design by sarahmac

We’re so incredibly proud to share the Simonlehners’ story, and want to extend the warmest of thanks to those generous donors who choose to support UpsideDowns with their 1% - you’re heroes. If you’re just learning about the brilliant work UpsideDowns do to empower kids with Down syndrome, check them out here and back them with 1% of your income on the regular now!