Connecting Over Your Children With Special Needs

*Celebrating being 90 articles strong today!

Our family was recently staying at a hotel that had a swimming pool. My nine year-old daughter and seven year-old son love to swim and were so happy to be in the water. But Kai, our son, especially loves it. Kai has special needs, eight different diagnoses and is obviously atypical when you see him. He was wearing a life jacket, unlike his similar age peers. And, for the first time ever, he was going in and out of the pool by himself. He doesn’t need to be held anymore or shadowed as closely. Even low-functioning special needs children grow up, huh?

Since I didn’t have to be in the pool with him, I was seated at a table nearby with my husband. Of course, we were watching them both closely. And along came Julia.

Julia is my new friend. She is bright and brilliant and quirky and creative and just the thought of our meeting makes me smile. And even though I live in Texas and Julia lives in the Midwest, we became fast friends. We recognized almost immediately that we were kindred spirits.

Julia and I met because of Kai.

Although, I think that it’s possible we might have met anyway, as she is super friendly, Julia’s son, Nick, is 28, has special needs and is low-functioning. She picked us out right away. It’s like finding a relative you didn’t know that you have. She saw her experience in ours and after a couple of minutes, I saw mine in hers (Nick wasn’t there but his gorgeous picture was admired by all).

Julia and I have similar lives. This is the life of the special needs caregiver. Although our children with special needs may be VASTLY different, our paths, as the caregivers, are surprisingly similar. We understand each other on a deep level. We can say things to each other that others won’t understand. We can laugh about disgusting things that happen at 2AM (and often, at 2PM).

But I truly think, having spoken to hundreds of caregivers over time, that making connections between caregivers is easier when your child is low-functioning. Why? Because those families are easier to pick out of a crowd.

There is absolutely no doubt in anyone’s minds when they look at Kai that he is atypical. Not so for my friend’s high-functioning son with Asperger’s. He is often misjudged as hyper, deviant, a child who “needs a firm hand.” His parents often feel judged as inept instead of cheerfully greeted as kindreds.

So, while I often tell parents of high-functioning children with special needs how happy I am for them that their kids are high functioning, I feel that in this regard, I am blessed. My tribe can find me on sight. Often, I can find them. And making these connections is so vital, because caregiving can feel so isolating.

So I am thankful for Julia and all of the Julias that take the time to see us and connect with us and enhance our lives, whether for a moment, an hour or a lifetime.

Please, I know that you are exhausted and overwhelmed from being on call 24/7/365, but you need this. You need to make these connections. For your own support. Because if you have support, you’ll do the most important job in the world even better.

Especially if your child is high-functioning and so blends into the crowd, find your tribe. We are out there waiting to meet you. So many of us want to know you. We just can’t tell if you are one of us when your child presents as typical. So say hello. Go to the parent support groups. Find a Facebook group. Ask for referrals to meet other caregivers through your school, your social worker, your therapy center.

We are out here. We understand. My hand is reaching out toward you.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!