Today’s guest author is Emily LaMarca.
Emily has a background in Business and Wellness, but has focused her energy over the past ten years on advocating for Disability Rights. Her son Cole, who happens to have Down syndrome, is her biggest inspiration. She has always followed Cole’s lead and this has led her to her most recent fight against the misuse of restraint and seclusion in Massachusetts schools and dedication to finding a better way to address challenging behavior. Emily is also a volunteer with the Alliance Against Seclusion and Restraint.
We did a thing. We wrote a book. But there’s a little bit more to the story.
Our son Cole was born fifteen years ago with Down syndrome, and I often say that when he came into this world, he flipped our world upside down in the best possible way. Cole has always been a compassionate, good-natured, and funny guy. He has taught us more lessons than I can possibly recount.
But the biggest lesson of all is that if we trust in Cole and follow his lead, he can overcome any challenge that comes his way.
When Cole was six years old, he was diagnosed with food sensitivities. This could have proved catastrophic for a kiddo who loved food as much as he did. But it didn’t. We found different ways to make our old favorites, and Cole was eager to be involved in the experimentation process. We tried to incorporate whole, nutrient-dense ingredients whenever we could. We didn’t always succeed, but we certainly tried!
I can’t say precisely when Cole started to gravitate towards the kitchen. Still, I can tell you the time he spends there is valuable on so many levels. Cole refers to time spent in the kitchen as his “flow.” It brings him a sense of calm, which was crucial in the months after Cole was traumatized by restraint and seclusion in his Massachusetts Elementary school.
During this time, we spent a lot of time in the kitchen. Because reading continued to be challenging for Cole, we created visual recipes so he could participate as independently as possible. We paired words with pictures, and Cole quickly took to this concept. We adapted recipes to support his food sensitivities. We provided him with a visual substitution list to learn to adjust the recipes when needed.
Months later, when we found a new school, we felt Cole needed something to help him build relationships with the staff. So, we sent Cole with his recipes and ingredients, and we found that cooking was a bridge to regain trust in people again.
When Cole was cooking at school, he was calm and engaged. These were the moments Cole thrived.
Ultimately, school proved to be too triggering for Cole in the end. We decided that it would be best to teach Cole in the home setting, somewhere he felt safe and empowered. We crossed our fingers that we were making the right decision, but in our hearts, we knew we were.
Being at home gave Cole a place where he could flourish. We saw a little boy who once was too nervous to try anything academic-related blossom into a young man who confidently wrote out grocery lists for his recipes. We embraced Cole’s love for cooking and tried to incorporate as many lessons into the kitchen as we could. Surprisingly, this was pretty easy as math, science, reading, speech, and fine motor skills are naturally embedded in cooking.
We decided to compile Cole’s recipes into a cookbook and publish it. Maybe it could help others who need a little extra support find their way into the kitchen.
Cole started choosing recipes, and we began searching for an illustrator who could help turn this dream into a reality.
We connected with a talented artist and children’s book designer, only to find out that she had someone close to her with Down syndrome too. She went above and beyond to bring our vision to life, and we are so grateful to her.
We knew right away that when we started to sell Cole’s cookbook, we wanted it to be impactful in every possible way. This included donating a portion of the sales to support an important cause. We could not think of an organization more deserving than the Alliance Against Seclusion and Restraint (AASR). The Alliance, a non-profit organization, has a powerful mission to educate the public and connect people dedicated to changing minds, laws, policies, and practices to reduce and eliminate restraint and seclusion from schools across the nation (and beyond).
The Alliance values diversity, dignity, safety, relationships, inclusion, collaboration, and neuroscience, all of which are crucial considerations in supporting our most vulnerable children. The Alliance has connected, supported, and helped hundreds of people begin the healing process by using their own experiences to change the narrative for others. We are so honored to play a small part in supporting this organization.
Five years ago this month, we removed Cole from the school that I feel at one time had broken him. Creating this cookbook has been a healing experience for Cole, for both of us. The amount of support he has received and how proud he is of his accomplishments can never be taken away. And I know that no matter where Cole leads us next, it will be precisely where we need to be.
Be sure to follow Cole on Facebook!