As a family with complex needs, we are frequently asked, “How can I help?”
This is a great question, but when I’m asked, it’s rare that my needs are met. It’s not because the asker has empty intentions, and it’s not because the needs are unattainable. It’s because some needs are time-sensitive, or because I don’t really know how you can help, you do.
What I can do is share the five types of friends I need as I parent to kids with special needs:
1. The “Person”
Perhaps some of you have watched Grey’s Anatomy, so you know about the close, transparent and unique friendship between Meredith and Christina. We all need a person who will come when we call, no questions asked. Maybe we need help getting to urgent care, or who knows what else we need our “person” for. Volunteer at your own risk.
2. The Runner
Nope, I don’t mean a jogging partner (unless it’s horizontal running). We need help with errands. Walmart grocery pick-up is a life saver! Having a runner is also a life saver when our doctor calls in a prescription but we are sleep-deprived zombies and cannot get there on our own.
Runners are the real MVP, if I’m being honest. You mean, I don’t have to put on pants and get my three small children out of the house? You’re my new best friend.
3. The Enabler
I know what I’m doing when I ask for a frozen pizza. We both know I need to be eating clean to improve my health, but when I call you and tell you I have a pint of ice cream to share with you, don’t ask questions, unless you need to know what movie to bring.
4. The Babysitter
Two of my three children have unique needs, so caring for them while I’m away is a hit and miss experience. One child has sensory issues which lead to listening issues, which lead to discipline issues. My other child has an expressive language disorder — apraxia. Sometimes, she doesn’t open her mouth while she’s busy talking. Our primary form of communication is ASL, or guessing. What does this mean? This means you may need to learn a little about autism spectrum disorder and how that looks in my oldest, talkative, brilliant kiddo. It means you may need to learn ASL. It means my kids will build trust with you, and you may see our ugly side… but man, do we need someone like you.
5. The Constant
For me, it’s my husband. For others it’s a wife, a significant other, a parent, a friend. We need you, and we need to give and receive love with you. Notice, I did not just say we need to be loved? We sometimes find ourselves incredibly weighed down by our circumstances which can lead to loneliness or depression. You are a light in the darkness. A constant.
Before I paint you as a martyr or saint, please know this role does not include a pedestal. We just want to feel alive. So let’s do life together. Let’s do mundane things together. Tell me what you need and let’s talk about how to achieve it. Let’s both create goals and do the nitty gritty of plotting out action steps, together. My chronic health issues, due to dysautonomia, may always be a factor, but where there’s a will (and a good support system) there’s a way.
Friends, you are needed. If you don’t see yourself as one of these friends, maybe we can brainstorm a little and I can update my list later on. The world isn’t what it used to be, where we easily intersected with our village, organically. With inventions like social media, I can (and do) have a close friend on the other side of the world. With a little creativity, anyone can get involved.
My potential village is vast. I may not share every single detail of my journey, but I know you are listening. Do you want to help? Pick a job, this is going to be fun!