On any given Sunday, a group of children and their parents gather in my apartment in the 16th arrondissement in Paris for an informal playgroup. While the parents chat over coffee, the children play, draw, build, or come up with their own games. What makes it different from any of the other anglophone playgroups offered in the city of light? It is composed entirely of children with cognitive, physical, or medical needs, and their siblings.
What these families share is a diagnosis. Not one specific diagnosis, but a rainbow of diagnoses. They run the gamut from Autism Spectrum Disorder to Down Syndrome, passing by ADHD, dyslexia and epilepsy, not to mention Type 1 diabetes, and more than one rare genetic condition. The specific diagnosis is not what bonds us as parents, but rather that frightening, incredibly lonely moment when the doctor says, “I’m sorry, but…” The diagnosis can come three minutes after birth, at three months or three years—it doesn’t change the fact that as parents, we are instantly lost.
When that diagnosis comes in a different country and in a foreign language, it is like starting all over again as a newly arrived immigrant, with no support network.
After the shock wears off and the flurry of research for treatments and therapies slows down, what settles is often a profound sense of loneliness. We desperately need “our people”, but where are they? For myself, Kathleen, and my co-coordinator Erin, it was this search for other parents who were sharing a similar experience that led us to join SPAN, the precursor to EKIPP. Though we joined at different times and our children don’t share the same diagnoses, we became fast friends. Our children also took to each other immediately, playing with each other in enthusiastic, if unconventional ways. When the American woman who ran SPAN moved back to the United States, we decided to take over where she left off, and EKIPP was born.
EKIPP–Extraordinary Kids in Paris…and their Parents too! is now an advocacy and support network for anglophone and multilingual individuals and families of children with complex learning, medical, or physical needs. We celebrate diversity in all its forms. More importantly, it is a lifeline for parents like us, looking for social connections for themselves and their children. The best part? Through EKIPP, we have found our tribe.
When we transitioned SPAN to EKIPP, we had two main goals in mind: expand our reach on social media to connect with more families, and increase the number of relaxed, informal social events that welcomed kids of all abilities, allowing parents to get to know each other offline. In our quest to provide our kids with meaningful friendships, fun experiences, and a chance to practice their social skills, something unexpected happened. We found ourselves making the kind of adult friendships that typically take a lifetime to cultivate, the deeply supportive, you can talk to me about anything, I will always have your back kind.
Special needs parenting friendships are much like our kids, the same as yours, yet different. We love to meet up over coffee, share stories and funny memes over social media, and sing karaoke until the wee hours of the morning. We love to share our kids’ successes and milestones, and trade cute photos of our children being silly. But where other parents have a general knowledge of developmental milestones or have been up all night worried about a sick child on occasion, parents of extraordinary kids have often felt the weight of the realization that many of those milestones may never be met, or known the fear of wondering if their sick child will survive the night. Sharing those experiences with friends and family is natural and important, but often we are met with uncomfortable silences, or worse, pity.
There is no pity in the disability or special needs community. There is empathy, understanding, endless encouragement and support, late-night phone calls and texts, and enough research sharing to earn an honorary PhD. Parents of toddlers bond with parents of teens, and parents of adult children are kind of like the popular girl at school—everyone else is slightly in awe of how cool they are. There are tears, of course, of both frustration and sadness, mostly when someone has said or done something insensitive or unkind to our children. But more than anything, there is laughter. So much laughter.
Parenting an extraordinary kid far from home and in a different language is not for the faint of heart. When we are informed that perhaps this school is not the right fit, are told our child is not allowed to join an extracurricular or sport activity, or realize our kid was the only one not invited to the class birthday party, pity is the last thing we need. We need to vent, or get angry, or cry, and then be picked back up and dusted off by members of our tribe. That is what EKIPP does for us, and what we strive to do for all our members.