All parents have needs, but for some of us who parent children with disabilities, those needs might be harder to meet. Some of our kids require extra medical attention, or extra supervision, or extra appointments to see different specialists and therapists. It is easier to neglect ourselves than to meet our needs. There are studies that suggest we might be more likely to have mental health issues or post-traumatic stress symptoms, and I wonder if those are a result of unsuccessfully meeting some of our needs.
So here are 10 needs of special needs parents. (OK, there are 11, but that’s because the last one is a need that I suspect usually does get met.)
1. Time for ourselves and finding something that gives us life.
We need time to recharge, and sometimes finding time for ourselves is hard, but we need it. Quiet time. Relaxing in a hot bath without kids knocking on the door or using the potty. Having a meal, alone, and not having to worry about feeding the little (or not-so-little) people we care for. Reading a book, uninterrupted. Crafting. Taking a drive alone, in silence, or blasting the music and singing as loud as we want without worries of sensory overloads.
We need to have something to look forward to, something that recharges us. A Zumba class, a fun trip, time with friends.
2. Safe friends.
They don’t have to be friends who have children with special needs, but we need friends who understand. Friends who make it safe to be really mad, or really sad, or who understand when we shake our fist at God. Friends who get it when we feel like we’re barely holding on. Friends who pray with us and for us and walk with us when we need it.
3. Taking care of our bodies and minds.
It’s so easy to put the needs of our children first and forget our own. I’ve talked to many special needs parents who feel their health is beginning to show the signs of neglect. It is hard to make yourself a priority when you feel like you’re barely surviving day to day. Planning meals? Eating a healthy diet? Exercising? Doctor appointments? It’s hard to do, but so important in order to take care of our families.
And for those parents caring for children with physical disabilities, maybe consider seeing a chiropractor regularly, or getting a massage, going to the gym to stay strong and learning how to lift weights (and a person) in ways that will not deteriorate your back.
And if you are struggling with anxiety or depression, don’t be a afraid to pick up the phone and see a counselor or a doctor. Sometimes mama needs help.
4. Respite.
Nobody can give, give, give without taking a break.
5. Time with spouse.
It’s so easy to make kids the priority and put the marriage to the side, especially when there are kids with high needs. Yet in order to stay connected, it’s vital to spend time together, dream together, laugh together.
6. Laughter.
Yes, we need to laugh! There are many sayings about laughter being the best medicine and therapy; those sayings are out there for a reason. Some of us carry so much stress that laughter is just what we need. Laugh, friends, laugh! Life can be hard, but life is to be enjoyed, and laughter reminds us that this life is good, and there is joy. What a sad life it would be if there was no laughter.
7. Face-to-face time with other families like mine.
There’s nothing like being around other families impacted by disability. Being around people who get what it’s like to walk in our shoes (or at least have a pretty good idea). It’s not only good for us parents, it is also good for the kids, for them to see other kids with disabilities like theirs. And it’s good for the typical siblings to feel validated, to connect with other typical sibs, to know there are other kids out there with lives similar to theirs.
We need community and a reminder that we’re not alone.
8. Sleep.
Enough said: sleep. We need sleep to function, for clarity of mind, for healthy bodies, for awareness, for rest, for… life!
9. Time with my “typically developing” children.
Our “typical” kids are not so typical, and they grow up with a different experience of family, responsibilities and sometimes sacrificing time with parents. They needs us, we need them. We need time with our typical kids, we crave it, we dream about it and sometimes it is a challenge to make it happen.
10. Professionals who understand and care.
Not all providers are the same. We need professionals who understand, who care about our kids. Providers who are on our team and fight with us for our kids. Professionals who show compassion and a relentless spirit to help our kids.
(11.) Coffee.
We need lots and lots of coffee.
A version of this post originally appeared on Ellen Stumbo’s site.
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Ellen Stumbo is the founder of Disability Matters, an organization with the mission to encourage every church to embrace disability. Ellen is a national speaker who focuses on issues pertaining adoption, faith, disability and parenting kids with disabilities. Ellen writes for several online platforms including Focus on the Family, LifeWay, MomSense, Not Alone, Mamapedia, Group, The Mighty and the Huffington Post. Her writing also appears in several book anthologies. Ellen blogs at ellenstumbo.com and you can also find her on Twitter and Facebook.
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