Category: At Home

You are a Dad. You are a Mom. A grandparent. Aunt, cousin, brother, sister, other. And, you are a special needs caregiver. You have one of the most important jobs in the world.

You are raising an angel. Your angel has their own specific set of strengths. And, their own special set of needs, circumstances, problems, differences, variables.

You are a superhero. You clear the path for them, organize their life, set up their world.

You participate in their world. Set them up for success at school. At therapy. At the park. At home.

You shadow them. You reorganize their environment so they don’t hurt themselves. They tantrum (or meltdown, which is different). You help pull them back together.

You are tired. Probably completely exhausted. Possibly depressed. Probably wondering where you fit in to your own daily life. Maybe you work, maybe you don’t. Maybe you are raising other kids. Maybe you have a spouse. Maybe you remember when you had your own interests and hobbies that did not include having memorized the entire script of Finding Nemo. Or having to clap for twenty minutes straight as we watch the same 30 seconds of Mickey Mouse Clubhouse over and over.

You are SO READY for some downtime. For “Me,” time.

The current lingo calls this “self care.” You need to take care of yourself. But when you look at self care lists on Pinterest, you think,

“I would love to take a bubble bath but I don’t have time.” (And I ran out of bubble bath six months ago)

“I would love the get a manicure, but I can’t afford it.” (and I don’t have time)

“I would love to have a glass of wine with a friend but I haven’t seen a friend in years except on Facebook.” (And I don’t have time. And I have to be sober for my child in case there is an ‘incident.’)

“I would love to go fishing, but I don’t have time.” (And I have to go buy a fishing license, which I’ve been meaning to do for months. And I can’t afford it.)

These lists don’t always work for us families and caregivers of special needs kids. So I decided that we needed our own list. Here, in no particular order, is my list of 10 Quick, Cheap and Easy Moments of Self Care for the Special Needs Caregiver.

1. When making yourself a hot beverage of choice because we all know you need the caffeine, stand there for a minute and watch the coffee brew, the Keurig spew. Take 3-5 deep, calming breaths. Can’t remember to do this? Post a note next to the machine to remind you.
2. I used to wear dangling earrings. I don’t anymore, in fear of them being yanked on. I replaced them with a sparkly hair clip. Or a bracelet I have made out of steel. Dads could put on a favorite watch. Take a minute and add one thing to your appearance for yourself that makes you happy. It might make you feel a bit more like your old self. Whether you are leaving the house or not.
3. Can’t go fishing? Watch fishing. This may sound ridiculous to you non-fishing folk, but my husband turns on fishing on TV on Sundays and leaves it on. This relaxes him. Hey, if it works for him, why not give it a try?
4. You know all those manipulatives your child has? You need one too. Keep a fidget spinner, a Rubik’s cube, a rubber band or whatever appeals to you nearby. Pick it up. Manipulate it. Especially when you are having obsessive thoughts about what else you should be doing to be a better caregiver. It gives an outlet for some of the energy.
5. Take a shower every day. If you don’t have a special needs child in your life, you may think that this is a crazy self care item. You caregivers out there know exactly what I’m saying, don’t you?
6. Drink more water. And when you go to get it, if it is in a chilled bottle or cold glass, hold it to your forehead or the back of your neck for just a minute. It’s relaxing.
7. Feel like you are about to have a meltdown yourself? Rub lotion on your feet or your hands. Concentrate on the cuticles of your toes or fingers. If you did your feet, put comfy socks on and continue on with your day. Extra points for Dads for this one.
8. When your child is having a tantrum or meltdown and it is going on for what seems like (and could be!) forever, there are pauses. Losing your sanity? FInd the pauses. Focus on them. At some point they have to take a breath. Even if its just for a second. While you are helping your child manage, help yourself manage by taking joy in these pauses. When the noise level is moving beyond what you can bear, listen for these tiny bits of heaven. I know it sounds a little crazy but I have used this method successfully. It works for me. The silence, quick though it is, becomes my reward. Focus on the pauses instead of the noise. Focus on waiting for the next one. It really helps.
9. Learn ONE yoga pose. Try a forward fold. Or child’s pose. Google relaxing yoga poses for stress for beginners. I’m not saying start an entire practice (although maybe you will). Use your new pose to lower your stress level. One could lead to another to you doing an online video or a class or… don’t get caught up in this right now! Just try one. Use it. See how it goes.
10. Our son is 6 and we still co-sleep. I actually enjoy this. My 8 year-old also co-sleeps with us. And my husband, thankfully. Everyone has their own bed (my husband and I share) but we are in the same room. They have their own rooms but don’t sleep in them. Think that’s nuts? You are not the only one who has that opinion. By the way, how many times have you woken to have a child in your bed? On your floor? On top of your feet? They get there anyway, don’t they? I am not suggesting that you co-sleep (although you can certainly try it!). But for the final quick, cheap and easy moment of self care, I am suggesting that you do what works for you. Sometimes it means going against the current advice that’s out there. Sometimes it means enduring raised eyebrows in public. Take a moment, take a deep breath and blow away the stress you feel from criticism. Everyone has an opinion. Until they’ve walked a mile in your shoes, blah, blah, blah. If you can, take care of yourself by letting go. You don’t need anyone else’s approval. You are a superhero and you are doing just fine. Really.

How do you practice self care? Do you sneak it in? Please share your suggestions in the comments below. We all need ideas!

My six year-old son takes the bus to and from school. He loves the bus. In the morning, he lets go of my hand, gives me a kiss and then walks on his own to the steps. I follow him, carrying his backpack. He always pauses at the bottom of the steps before climbing up. He has periventricular leukomalacia and one of the symptoms of this is having to think about every part of a movement before he can do it. Eventually these things, with practice, will become second nature and he won’t have to pause. But for now, he pauses. Then, after thinking about it, he puts his hand on the handrail, steps up the four steps and takes his seat. The nurse always buckles him in (she is there for another student, yet to be picked up in the mornings). The bus driver always greets him with love, like he is family. We chat for a minute, I wish them a good day and I wave as the bus pulls away.

We do this every day.

In the afternoon, the bus pulls up and my son usually makes excited sounds and wiggles around. He is happy to see me. Sometimes he has his shoes on and sometimes he is barefoot, having thrown off his shoes and socks. I might pick up a sock in the stairwell and then have him sit at the top of the stairs. I put his shoes and socks back on. He needs to walk to the door of the house now because he is too heavy for me to carry. I miss being able to carry him. I always get a kiss hello and a happy dance as he pulls my hand to walk back toward the house. We say goodbye to the nurse and the bus driver. I follow him up to our door and he pauses. He waits for me to open the door and, happily, he comes inside.

It is idyllic. Happy. Peaceful. It is my favorite time of the day. My husband loves it too. We are so proud of him. It’s perfect.

Except, one day it wasn’t.

I was out of town, a very unusual occurrence, helping a friend. My husband called me in a panic. Our son’s school had called. There had been an accident. Our son was still on the bus. Could my husband go get him?

My husband was frantic.  I asked him, what kind of accident? Was our son OK? My husband didn’t know. He couldn’t calm down. All he had heard was it was our son. There was an accident. Come, now.

We hung up and I waited, full of anxiety, while my husband drove to where the bus was to get him.

There had been an accident but if my husband hadn’t been so alarmed he may have heard that it was our son who had had one. Not the bus. Also, it kind of wasn’t totally an accident.

Our son had been sent to school wearing pants with a belt on and that belt was pulled as securely as possible without hurting him. The school had put him on the bus to go home with the belt buckled loosely. Not a big deal, you say? The belt is on, isn’t it? What’s the problem?

Over the summer he had begun the less than delightful activity of poop exploration. Touching it. Smearing it. Decorating with it. And more.

Apparently, he’s not the only one. When we told the school about it (and we had because soon they would be dealing with it, after summer break), they told us that lots of special needs kids did this. But they weren’t comfortable with pulling the belt so tight. They thought it might hurt our son. We had been doing it all summer with no marks, no discomfort, no nothing. They chose not to tighten it. So our son had a bowel movement on the bus. And proceeded to redecorate.

It was smeared all over him. All over the seat. On the seat belt. On the harness (special needs bus = harnesses). Shoes. Window.

They wanted my husband to meet the bus to pick up our son. The bus needed to go to the bus barn. They needed to clean it and disinfect it.

Imagine this. I am in another state, standing on top of a mountain, helping a friend. I am on the phone with my son’s school. I am looking out at the trees, standing outside of my friend’s house discussing options. Alternatives to the belt. They weren’t comfortable buckling it as firmly as it needed to be to prevent these events. They wanted another way to prevent this. And they were asking me how we were going to do it. Panic set in. I had already brainstormed before the belt. I had thought, behavior modification? Essential oils? Psychotherapy? Neurotypical kids could use sticker charts, rewards, books about using the potty. Our son had no interest or understanding of any of that. Then one day, a thought popped into my head. “Dummy, have you tried a belt?” (Yes, I said dummy to myself. I don’t usually call myself names but it seemed so obvious, how did I miss it?) Most of the time over the summer the belt had worked. Now, the school didn’t want to use it. I was at a loss. I felt isolated. I felt a little embarrassed. I felt like I was the only person in the world dealing with this problem. I wanted to cry. I was back to square one.

I was so thankful when the school came up with other options. Pajamas that zip up the back, which he could wear to school. Or overalls. Overalls! Super cute and we live in the country so he would blend right in. They were expensive at $25 a pair (You shop the sales, right? These NEVER go on sale). But we got ’em. And, so far, our son has not figured out how to get around them. He will. Of this, I have no doubt. He is really smart. Being special needs doesn’t mean he’s not smart. He is also a problem solver. If it catches his interest he will attempt every possible way he can think of to get past the overalls. Then we will have to come up with another solution. But, not yet. It is a break. A breathing point. For now, it works.

This afternoon, the bus was late by about ten minutes. It has never been late before. I walked out the door into the crisp fall day and went to meet my son. He did his happy wiggle dance and made his happy noises. His shoes happened to be on today; he hadn’t taken them off. The nurse unbuckled his harness and he stood up and came to the steps to meet me. The bus driver handed me his backpack. My son did his happy dance again at the top of the stairs. I stepped up and got my afternoon kiss. He put his hand on the handrail and paused, thinking about it. Then, with my encouragement, he walked down the steps as I envisioned all of the hours of therapy we had done in order for him to be able to do this. I’m sure my eyes were shining. I am so in love with him. As I wished the nurse and bus driver a good weekend, my usual custom, the bus driver stopped me.

“I’m sorry we were late today. We had a kind of poopy incident, ” she said.

I stopped cold and turned to face her.

“Was it my son?” I asked. My eyes felt as big as plates. My breath stopped.

“Oh, no,” she smiled. “It was another student.”

I exhaled and my smile returned. Relief coursed through me. He was wearing his overalls. They were still working. We were still one step ahead of him. For now.

“YES!!!!!!” I fist-pumped the air. The bus driver laughed. We said our goodbyes and I followed my son to our front door, the fall leaves gently coming down around us, the sun bright.

Today was a good day. Today, it wasn’t my kid.

I am getting older. Of this, there is no doubt. My skin has more wrinkles and my hair needs dye instead of just doing hair dye for fun and fashion. The amount of candles on my cake could start a fire and certainly will set off an alarm if we include them all. No doubt, things are changing. And not just physical things.

My personality is shifting and changing as well. I believe that this is part of gaining maturity (hopefully) and life experience. I see situations coming now and can avoid mistakes that I have made in the past if I pay attention. I aspire to do this more. Sometimes I am successful. Sometimes I fail.

One of the things that I have really noticed, a huge change, is having patience. As a special needs parent, my eyes have been opened to both the struggles and the triumphs of those that are differently abled. I am SO MUCH MORE PATIENT with folks (special needs or not) that are truly doing their best, working hard, asking for help, getting it done no matter at what rate. Achievement has been broken down from the big picture into the microsteps that it takes to get there. Every single step forward is won by hard work, trying and failing, persisting and loving and supporting. It’s just that typical folks might progress at a faster rate and the microsteps might be bunched together and less visible. The atypical folks? Its easier to see the microsteps because maybe they are happening very slowly.

I like this about myself. I like being more patient. I like understanding that the process is different for everyone but no less important.

But, while I have become so much more patient in this regard, I am SO MUCH LESS PATIENT in other ways. I have always been troubled by people who don’t do their jobs well because they just don’t care. If you are new, having issues but working to resolve them, or if you just made a mistake but are willing to fix it, this is absolutely fine. But if you don’t want to do the work, don’t take the job. Or, at the very least, stay out of my path. I can’t stand this. And now, more than ever, I don’t have time to deal with it.

Think about this – every parent that has a special needs child is exhausted, overworked and shelling out money for all of the extras that go along with this type of parenting. They have to figure out where that money is going to come from to buy the medications, special foods, special stroller or wheelchair, ramps for the house, adaptive clothing, g-tube, oxygen tank, canes, crutches, special shoes, a car big enough to tote everything and more. They probably have to work. They have to raise the rest of the family. They can’t get sick – ever. They feel like they can never die. And most of these parents are some of the nicest people you would ever meet, except you probably won’t ever meet them, because it’s really hard for them to get out of the house unless they are going to the doctor, therapist, school and back home again.

So, when this person, so completely over-extended, runs out to purchase something, orders something or makes any kind of transaction, they need it to go smoothly. They have already figured out where to get the money to do the transaction, they have made arrangements to run the errand (a sometimes Herculean effort), they have shown up. And they deserve what everyone deserves when purchasing a product or a service – a timely, pleasant transaction, with the proper product or service given

Let me speak on behalf of special needs parents everywhere – WE DON’T HAVE TIME FOR PEOPLE’S NONSENSE ANYMORE. Please don’t misunderstand me; this does not include folks trying their best. Going back to the thoughts about my maturity – I have realized as I have aged that I don’t have to put up with everything that I thought I had to put up with. Even trade for the wrinkles? Eh, not so much. But good to know nonetheless.

If you are not a special needs parent you will never know what it really takes for us to honor our amazing children and get the job done right. So, please. Step up or get out of our way. We don’t have time. We are raising angels.