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The Alvarado family takes the lead

The Alvarado family takes the lead

Kayaking will always have a special place in my heart. Being on the water is so calming for our daughter, Magnolia, as well as the entire family. For us, when Maggie was 9, we realized that as long as one person could row, the boat could still glide along the water. That meant it could be a fun activity for her to enjoy. Instead of sitting on the shore and watching the waves, she would be able to explore different rivers, lakes, and oceans. We’ve been kayaking ever since.

Kayaking is one of the activities I consistently tell people to try. Because Maggie has a good amount of core strength, it’s always been something she could manage. Unfortunately, we didn’t even think about that when we invited the Alvarado family along for this adventure. Their daughter Grace is 6 years old and has Rett syndrome. Luckily for us, Grace has three siblings, Jeremiah, 11 years old; Noah, 9 years old; and Emma, 4 years old, who were ready to adventure the archipelago at Thimble Islands in Connecticut.When we first met the Alvarado family, Jeremiah and I started discussing their kayaking experience and how we were adapting the kayak for Grace. We both had a moment of realization that Grace needed more support than we had anticipated. Magnolia can sit without support. The assumption was since the Alvarados had kayaked before, Grace would be able to sit like her as well. This was not the case. Luckily, when Magnolia was younger, for safety reasons, we would kayak with her sitting between one of our legs, instead of a seat. Elsie and Jeremiah both agreed that this would work for Grace as well. It was actually how they had anticipated adapting for her.

Grace is excited to kayak

As parents with complex kids, we are used to adapting different situations to our own kids but not necessarily to other complex individuals as well. But if anyone is going to be thrown a wrench, complex parents are the ones to figure it out and use the tools they have to make everything work out.

One of the biggest lessons of the day wasn’t how to adapt for Gracie. It was realizing how much we rely on the siblings of complex individuals. Not only do they consistently have to show patience, but also they have to step up and help us out when we need an extra hand, which is pretty often.

One of the biggest lessons of the day wasn’t how to adapt for Gracie. It was realizing how much we rely on the siblings of complex individuals.

Jenny Tesler, Magnolia’s Mom

Sibling dependency is something we often take for granted. Asking kids to wait, be patient, or pick up the slack is a lot to ask of a kid. While we were rowing, Elsie and I realized the amount of pressure that was being put upon Noah. Noah is an athletic 8 year old, so the assumption was he would be able to paddle along with Elsie. It was harder than we had expected and there were a couple of moments where it showed on his face. The realization that our expectations were too much was humbling. It gave me pause, and instead of joking around, encouraging him felt more appropriate.

I wasn’t expecting to be reminded of the emotional or physical burden that can be placed on a Rett sibling, but I’m glad I was. We often need the reminder to take a step back and make sure our families aren’t just focused on our children with complex needs, but also our children who are carrying the weight of our complex lives in their tiny bodies.It was a great day with the Alvarado family, it was fun to see the Thimble Islands, and I’m so glad we were able to explore and adapt together. Kayaking is just one of those things that no matter the body of water, it feels adventurous, it feels outside the box, and it feels like we are living.Lastly, how do you say archipelago? I’m trying to settle a bet with AJ.

Episode 8: Thumbnail

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