You have a child with special needs. You give and give and give, and somewhere along the way you start to lose yourself. This is common for all moms, the infant years are intense. But you, mama, you can’t take a part time job and put your child in part time daycare when you need a break. Play group isn’t the same when your child doesn’t interact with the other kids. You need to be there. Doing it. Helping. Implementing behavior plans, social skills steps, and encouraging speech, bilateral movement, and gentle adaptations to normal everyday routines.
Daycare isn’t equipped to handle your child with developmental delays, fragile medical needs, food allergies. Not to mention, who would take the child to twice a week speech therapy, occupational therapy, physical therapy, and navigate the number of alternative medicine treatments you navigate?
There is no doubt about it, you give.
Mama, it’s important to not lose yourself.
Where moms of typically-developing children generally can start to recover as their child potty trains, can play independently, and enters preschool around age 3 or 4, we don’t. Naturally as typically-developing children grow, they will start to separate from their parents, and parents will once again have *space* to themselves. To be themselves. To remember what they liked to do.
For us, with children who have developmental disabilities (autism, developmental delay, etc) our children are developmentally infants for years and years. Then on comes the ‘terrible twos’ of toddlerhood, but they don’t just last a year for our kids, they last years, and they start later when our children are older. Along come the ‘independent threes’ but our kids may be well into elementary school before they are finally seeking some independence. And so it goes.
If you wait until your child is starting to become more independent, you’re going to burn out, mama. The fog of lack of sleep, the same drama with health care professionals, the school system, and trying to figure out what is best for our family wears on us.
I want you to try. Try to carve out even 10 minutes in the morning, 10 minutes in the evening to create a routine where you do what you want to do. I’ll give you some starting points and suggestions in a minute. So many of you have been so maxed out for so long that you won’t even know where to start. I know. I’m that mom too, and I am friends with so many of you as well.
You’re not selfish
The first thing you need to do is ditch the guilt. Right now. When you think of doing something that you would like to do, where do you feel guilt in your body? Put your hand over that place (usually your heart or throat), and breathe into it.
As you breathe, say to yourself… I am not bad or wrong for wanting to ____. Wanting to ___ is not bad or wrong. Taking time to ____ is not bad or wrong. You might cry. This is good. Crying actually will help you stop the adrenaline flow of a fight-or-flight response and will boost the feel-good chemicals in your brain. (source)
You have needs
You have needs. Just because someone else has more needs, doesn’t mean that your needs are invalid. I won’t go over the analogies of ‘you can’t pour from an empty cup’ or ‘put your own oxygen mask on before you help your child’ because it’s very likely that you have, in fact, been pouring from an empty cup for a long time.
But your light might be starting to dim. You might forget how to be in the moment, and be wrapped up more and more with anxiety, or a creep of depression. You’re worried about your child, your family, your finances. I know. You even have a smile on your face… you know you have to because your kids reflect your mood. But it’s not enough. Just because you’re smiling doesn’t mean that you feel good.
You need to take time for yourself. It’s not selfish, it’s being human. I want you to just take 10 minutes and try to get in touch with doing something for you, and you only. Not listening to headphones to drown out the noise, not drinking a glass of wine to destress enough that you can go to sleep. Those are reactions to your environment. We’re talking about doing something for you, because you are worth it. You don’t need a reason.
You need to do something proactive for yourself. Let’s see where you can start.
Where do you start?
You probably need to say no. No to therapies that you’re not seeing benefits from, no to helping out in the under staffed special ed classroom, no to yet another appointment, specialist, holistic treatment, or therapeutic recreational activity.
Second, start small.
Have you stopped blow drying your hair, in favor of the mom bun that dries as you wrangle children into clothes, socks, shoes, breakfast, carseats, and school? Mama, put on PBS Kids, put your husband in charge, or wait and take your shower when everyone is out the door int he morning. Then spend the 10 minutes to use a good-smelling shampoo, exfoliate, put on lotion, and dry your hair.
If using the hair dryer isn’t your thing, maybe it’s putting on a little makeup, watching what you want to watch on TV that morning, or even cooking what you want to eat (we so often fall into the trap of making what everyone else will eat, and we make do) in the morning.
Whatever you do, make sure you take time to enjoy it. Yes, we like the drive-through coffee kiosks on the way to speech therapy, but drinking a mocha while you drive, talk to the SLP, and then stare at your smart phone (or worse, make a needed phone call) doesn’t count.
Third, Be intentional.
We’re parents of children with special needs. We know we’re going to be putting the effort in, so let’s make sure we can get what we need out of it too.
Ask for favors to make your life easier. I recently asked a local swim/gymnastics center if they could take my oldest (the one who has special needs). She has a processing disorder, which means that yes, it does take her longer to understand instructions and she needs to be with a very patient instructor and a lower class size. But having her here, rather than at the special needs recreation center means all 3 kids can be in lessons at the same time, same place.
Mamas. This is 45 minutes that I have to myself, plus less driving, less frustration, and less time spent.
So what do I do during these glorious 45 minutes while my children are being worn out and well cared for? I knit. Knitting is something I learned to do when I was pregnant with my second child, but once #3 came along I figured I didn’t have time for crafts any more, and it was set aside. While other parents are scrolling through social media, I leave my phone in the car, and I’m intentional about doing a hobby that I love. In the middle of a Saturday morning, no less!
Being intentional has two parts. First, ask for favors that aren’t going to over extend yourself, but will make your life easier. It’s common for us to ask for more therapies, to learn about supplements, to learn about testing that might help show what’s going on. This all adds to our plate- another place to drive, a new pill to buy (and then convince our children to take), follow up appointments to coordinate. Second, plan ahead to make use of the time you do get.
You may need to move money around in your budget so that you can pay to have a collage age babysitter come every week at the same time to care for your children. Have this in place (intention) and it will become a habit.
Fourth, focus on Relaxing, not Distracting
Scrolling social media can seem like it is relaxing, but it’s not relaxing it’s distracting. It’s information overload. Just because it’s a break, doesn’t mean it’s a healthy one.
I’m not going to tell you what is right or wrong, we’re all individuals. If you’re an extrovert, you may find talking to a friend on the phone to be rejuvenating and energizing. If you’re an introvert, half an hour spent lost in a fiction book may be what you need. Either way, knowing what you need, as well as finding a time to do it, is necessary for self care.
What if you don’t know what you like?
I’m in a parents group (they have child care and a catered dinner for both parents and kids- this is another way I do self care) for parents that have children with special needs. We talked about self care, and one of the moms with children in their late teens said, with tears in her eyes, that she wouldn’t even know what to do with a couple hours to herself. She had lost herself.
I felt the same way. About a year ago I started forcing self care on myself. I was healthy physically, but really on edge emotionally, and it’s really just because I was maxed out.
So I started looking around.
Wow, that’s cool
Do you find yourself liking the product of someone else’s hobby? That’s a great place to start.
This can be anything- painting the walls in your house, swimming a mile in a nearby lake, sewing curtains for the living room, taking care to do makeup, hair care, or manicures. Knitting, pottery, pinata making, cake decorating. Planning a dinner party, being involved in local politics (because you enjoy it mama! not just because you are lobbying for what your child needs- there’s a place for that but you can’t count it as self care), paddle boarding in the river, training for a bike race. Yoga, meditation, energy work, feng shui.
No, you won’t be good at first. Yes, it will probably cost money. I know, you think you don’t have time. But you need to make time. You don’t have time not to. This is your life too.
What do others do?
I didn’t know what to do, so I looked around at what other people were passionate about. This sounds fake, and unauthentic, I know, but you know what? it worked. Other people like watching TV programs, so I binge watched Gilmore Girls… and then Gossip Girl, White Collar, and House of Cards. After I got over the guilt of not reading another business book, book on sensory processing disorder, or folding the mountain of laundry in my room, I came to enjoy this nightly ritual. Other women enjoy wearing, trying, and looking good with makeup. And yes, I did too
What did you do in high school?
This is another way to tap into who you are, when you’re not someone’s mom. I was on the swim team, and I loved ceramics class. I had fun going skiing in Tahoe a few times.
Whatever you did in high school, see if there is a way you can go back to it a bit. I was thrilled to find that most adult sports are way less competitive, and way more encouraging (we’ve matured- who would have thought ;) ) than they were in high school.
Take the time, you’re worth it
Nobody else looks at us, moms that have children with special needs, and thinks that they need to give more. That usually is coming from right inside us.
Take a break from that, mama, and take some time for yourself.
It’s self care. It’s important. Next time you feel that twinge of ‘there is something more productive I could be doing’ I want you to follow your passion, even if it’s just for a couple minutes.
Grain-Free Holiday Desserts, Breakfasts, and Side Dishes
Candied Butternut Squash, Zesty Lime Custard, Honey-Sweetened Pecan Pie, Slow Cooker Cranberry Sauce, and 10 more holiday recipes that you'll love for the way they taste and the way they make you feel.