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 are 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 (okay there are eleven, 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 do not have to be friends who have children with special needs, but we need friends who understand. Friends that make it safe to be really mad, or really sad, or who understand when we shake our fist at God. Friends that get it when we feel like we are barely holding on. Friends that pray with us and for us and walk with us when we need it.
3. Taking care of our body and mind
It is so easy to put the needs of our children first and forgetting our own. I have 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 are 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 learn 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 is so easy to make kids the priority and putting the marriage to the side, especially when there are kids with high needs. Yet in order to stay connected, it is 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, it’s good for the heart to laugh.
7. Face-to-face with other families like mine
There is nothing like being around other families impacted by disability. Being around people that get what it is like to walk in our shoes (or at least have a pretty good idea). It is 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 that there are other kids out there with lives similar to theirs.
We need community, and a reminder that we are not alone.
8. Sleep
Enough said: SLEEP! We all need sleep, we are human. 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 care, compassion, and a relentless spirit to help our kids.
(11). Coffee
We need lots and lots of coffee.
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This comment is coming from a mom who experienced raising a physically challenging child. Ellen’s post is right on in so many aspects. Unfortunately I didn’t receive her valuable advice when I really needed it 35 years ago. Results of many years dedicated solely in the care of my son now left me with arthritis in my lower back from pulling the wheelchair up stairs and keeping my emotions and feelings deep in my soul resulting in an anxiety disorder. I now suffer from PTSS. I sought therapy and doing okay. I strongly suggest reading her post and follow through with her very critical points. I wish I did.
Yes yes yes and yes!
Your posts, but especially this one, bring the tears to the surface that I’ve been pushing down all day.
Thank you!! For being transparent.
Agree with everything you’ve said!
Yes all very true. however the “system” tells you all this but no one helps you make it happen!! when you are in the thick of it you need someone with a magic wand to come in and give you some money for respite so you can do all these things. Simply does not happen!
I’m trying to organise a fully or even partially funded parents weekend retreat at a meditation centre – the place that really saved me from drowning when I was in the thick of it.
I’m hoping to be the magic wand waver for at least a few parents each year if I can get support through the system.
the other points I would add to your list (the things I learnt at the retreat)
1. Don’t push down those feelings, (you know the ones I’m talking about) acknowledge them & accept them you don’t have to dwell, just accept that that is how you are feeling right now and accept that that is OK, your mind & body will thank you for it later with better health!
2. Do things for other SN parents, a quick phone call or a message RUOK…. can help make someone else’s journey a little easier and make you feel great!
from an Aussie mum to a severely gorgeous 7 Yo xx
Thank you for putting this into words! Exactly what I have been trying to put into words for my family and friends to understand my view!
“Our typical kids are not so typical.”
So true.
I’ve been struggling to accept my role as a special needs parent now. I loved being a “regular mom” before. I’m almost two years in and still trying to reconcile the two: http://kathymcclelland.com/2015/05/a-year-of-old-me-and-new-me-2.html/
Your idea that our typical kids are also not typical is maybe helping me to begin redefining our whole family and each of our unique roles…
Also, yes, my back is going to need some TLC to make it over the long haul. 🙂
Kathy, thanks for leaving a link to your blog so I can go and check it out.
Also, I recently started chiropractic care, I need it, and I have to go once a week (at least) to keep things in check. Although a massage would be great too 😉
I agree to all of what you said above. I am a single mom of an adopted daughter with downs. I use to get my breaks monthly thru respite. But last year they changed the way to to be able to get the respite funds. They did a bingo pick with the computer every 6 months. I was told if you didn’t get pick the first time around, you would get picked the 2nd chance. Well, we didn’t get picked either times. So I have gone 1 yr without any breaks from my daughter, except when she is in school. And that is if I am not called to pick her up because she’s hit someone at school. So I am always on edge of me even trying to find time for myself. And I don’t have any friends who I can trust to care for my daughter enough to give me a break. And I don’t have any family support either.
I agree–I would love time away–esp. time with my spouse…it just doesn’t happen very often as we rarely have a sitter. Most couples our age don’t have a child that needs to be watched constantly. It’s hard to find someone to watch an almost 11 year old, that we can afford! If we pay for a sitter–there goes the dinner or any other activity! My Mom is 76, she can’t watch him and his brothers all work &/or have little ones of their own. Maybe someday! I still have 4 gift cards for massages that I’ve never been able to use…oh well.
I have found things are actually harder as my daughter has gotten older. So many friends now have children that as they become teenagers no longer have the need to find a caregiver and can just go and do. They used to ask me to join them but I still have to plan ahead and find someone to stay with my daughter. Not that I did things very often before but as you keep turning down invitations they stop coming.
Jen, I hear that too, sometimes the older years get harder, yet I also know of people who say that the older their kids get the easier it becomes. I wonder if this is affected by which disability it is?
Hi Ellen! I love this! Every one is so true. I am a Parent Rep for Special Needs families with infants and toddlers. I was wondering if I could have your permission to put this in my quarterly newsletter (Fall) for our parents (without the photos). Thank you!
Monique could you email me? ellen at ellenstumbo dot com