I get it. When you stop for a moment and say, “Take care of yourself, OK?” you’re telling me you care. And I’m so glad you stopped instead of walking by. But can I let you in on something?
I’m trying to take care of myself, really I am. On days where my son’s health is decently stable I think I actually do. I exercise, cook meals, do laundry, pick up kids and even sneak in an extra long shower.
But the rest of the time, I’m just trying to keep my kid breathing, medications stocked and administered, seizures monitored, appointments rescheduled, and giving him the best life possible. Those days, finding a clean pair of socks is about the best self-care I can manage.
I’m sure you’ve been in that situation where someone enters a room carrying a huge load of boxes. The person looks a little nervous (something is definitely going to fall) and their face is strained with the effort of carrying the load.
As you’re sitting in a comfy chair in the reception area you call out, “Don’t hurt yourself or drop anything!”
Considerate? Maybe. Helpful? No.
Obviously the guy doesn’t want to hurt himself or drop anything.
He doesn’t need to be reminded of that, what he needs is a hand!
When we find ourselves in that situation, most of us would jump up and grab the door or take something off of his hands. That’s help. That’s concern in action.
Moms of special needs kids often feel like that guy carrying all the boxes.We’re maxed out and struggle to meet the demands of each day. It’s not just about managing our time better or learning ways to take care of ourselves–we think about those things all the time!
There is simply more demanded from us than one person can do.
For some moms, there are behavior issues that never. let. up. For others of us, it’s not possible to leave our kid’s with family or friends because of our child’s complex needs. Some live in a state of constant anxiety, living from one behavioral or medical crisis to another.
Being a parent is hard. But being the parent of a child with special needs can seem downright impossible. We need you on our team, with the big and little details. 1 John 3:18 reminds us to “not love in word or talk but in deed and in truth.”When you take the time and effort to tangibly show families that you care, you demonstrate the very love of Christ.
If you know a family with special needs in the mix, here are ways you can jump up and help:
1. Just ask. Ask how they’re doing, ask if there’s something specific you could do for them. If you don’t have ideas, see numbers 2-10.
2. Drop off a fun box for the kids! A lot of us fail to provide “fun” opportunities for the siblings. Once a family left a package on our front door filled with pillow pets, kits and books for each of the kids.
3. Drop off an “I’m thinking of you” gift. I’ve never heard of someone NOT loving a spontaneous coffee or flowers!
4. Befriend families that have children with special needs. Invite them over for a meal. Include the child with special needs in birthday parties. One mom said, “Give me the opportunity to decline, if necessary, but don’t exclude us altogether because of our special needs.”
5. Pray for the parents of children with special needs: that they will be wise and experience God’s grace. Let these parents know that you are praying for them through an e-mail or note. Calvin hasn’t been able to attend church for several months due to illness; it brought tears to my eyes when he received a brightly decorated card from the kids in his Sunday school class.
6. A warm meal is like a big hug at the end of a long day. Giving a meal allows a mom to get a break even if she can’t leave the house.
7. Gift cards for gas, groceries or restaurants are wonderful! Did you know that families with special needs often have mounting bills for therapy and equipment not covered by insurance? And most families have one parent who has left a career and financial security to meet the needs of their child.
8. Volunteer your skills. Offer to help with yard-work, fix-it projects, car repair, legal help, etc. Chances are there’s a perfect match between what you do and what the family might need. Just ask (a huge thank you to those who do!!).
9. Take me out! We’re often so involved within our four walls that we don’t do a good job initiating with our friends. Laughing and talking with friends clears our slate of stress and give us an opportunity to remember our identity is more than a “special needs parent”.
10. It’s hard to care for a medically fragile child. Most of us don’t have homes set up for shower chairs, wheelchair ramps, hoyer lifts or enough space to keep all the equipment. Maybe you’re in a place where you could give (or organize) a life-changing gift to a family. I’ve loved watching this community of Christian love surround little Pearl.
We’re not entitled to wonderful people like you, be we are SO thankful for you! Thank you for being quick to care and slow to judge. Thank you for taking time out of your life to show us you want to be a part of ours. Thank you for getting up to help us carry the load.
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If you’re a special needs parent, share this with your friends and be sure to get a copy of the Insider’s Guide to Respite Care! It’s a definitive, massively helpful, easy-to-use resource that will connect you with organizations that provide respite for families like yours!
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