Burn out is a very real state of being for the special needs caregiver. This is the greatest job in the world but it is 24/7/365. So tired that you want to drop? You aren’t alone. Right now, there are caregivers all over the world feeling it with you. We are just doing it separately because, you know, its SPECIAL NEEDS CAREGIVING.
Here are 10 things to help you get through when you are wiped out.
Just show up. You don’t have to feel well-rested, motivated, in a positive mood or upbeat to accomplish this. Show up for your child (as if you ever wouldn’t).
Remove everything that doesn’t HAVE to happen today and just do what NEEDS to be done.
Drink water. Eat something healthy. Maybe something that grew the way you are eating it, like an orange instead of the juice? A baked potato instead of fries?
Refrain from making any decisions until… For me it is until I have had morning coffee. What is something that helps you make decisions better after first waking up? Do THAT before making the decisions.
Forgive yourself. You made mistakes or didn’t do things to your standards or dropped the ball. It’s OK. Let it go. Pick things back up as you are able.
Do some self care. You knew that was coming, didn’t you? Don’t know where to start? Search it on Pinterest or Google it. There is a whole world of information about it.
Some days you win, some days you lose, some days you about break even. Accept this and know that if you lost, you will also win soon.
Do something small that you feel that you can accomplish. Maybe the dishes are piled high in the sink but you can’t bear the thought of dealing with them. Plus the dishwasher is already full of clean dishes. Just start by putting away the clean silverware. Come back for the next small chunk later. Keep going until the whole is done. Time spent for the project as a whole doesn’t matter today.
Ask for help. We caregivers SUCK at this. And we are often the ones that most need it. If you feel like you can’t delegate care of your child, because NO ONE DOES IT LIKE YOU DO (sound familiar?), try to ask for help for other things. You know, like those dishes.
Remember that life is cyclical. You will have days where you feel strong and days where you are so burnt out you are literally crawling to the finish line. If you are having a hard day, remember that an upswing is coming!
Don’t forget to take a minute and admire your beautiful child. Sometimes in the quest to accomplish we forget the beauty and joy that they are.
Pause. Notice. Refresh. Reset.
You’ve got this.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
Not long ago, the Crossfit gym that I attend decided that for the new year, they would do a wellness challenge.
Insert my groan here. I have a long history of issues with food and diets. I have been severely obese and a normal size. I have been on every diet and eating program under the sun and lets just say, right now, that I was unenthusiastic. I don’t like working with other people when it comes to this. I would much rather figure things out on my own (I lost 100 lbs. in my twenties and kept it off for more than a decade with no help and no interventions. Then I GOT MARRIED. I HAD KIDS. And several stressful events had me putting my health and self care on the back burner. But that’s another post for another day).
But there were a couple of reasons why I got sucked in. First of all, my amazing trainer, Edlin, gave me the big, beautiful, brown eyes and encouraged me to join. She thought it would be good for me. Secondly, it was a WELLNESS challenge and NOT A WEIGHT LOSS challenge. Thirdly, it was a competition in teams and I really, really liked my team leader. And, finally, since becoming a special needs mom, my own wellness is a huge priority. I need to be strong, healthy and ALIVE for as long as I possibly can in order to care for my son. If you are a caregiver, you know exactly what I mean. Yes, others can take care of our children when we are gone but they won’t do it like WE would do it, even if they are amazing.
So there were a lot of reasons why this was a good idea, my cranky attitude notwithstanding (Did I really need ONE MORE THING in my life right now?). I went home and thought about it and decided that a) I would commit to doing it and b) I would lose the cranky attitude, because no one likes having to work with cranky people, myself included.
Each team was given a different eating program. I ended up on a team that was doing the 800 Gram Challenge. I had never heard of this. Immediately, my thoughts whirled. How much does a gram weigh, anyway? Am I only allowed to eat 800 grams of food a day? Am I going to go hungry? Is this going to suck? Is it going to restrict me to where I am setting myself up to binge? Wait, I have to WEIGH things (past diets surfaced in my mind)? Let us just say that I was HESITANT.
It was SO FABULOUS that even though the challenge is over, I am still doing it. I FEEL SO GOOD on it. It is easy to do, there is absolutely no deprivation whatsoever and I definitely feel healthier. Talk about a surprise!
The premise of diet programs is restriction. The premise of the 800 Gram Challenge is getting in a minimum of 800 Grams of fruit and vegetables a day into your diet (including potatoes!). When you weigh your produce, it is for the sole purpose of making sure that you EAT THE MINIMUM or more. What else can you eat during the challenge?
You can eat anything else you want. As in anything.
As in you won’t be hungry. As in your goal ISN’T changing the numbers on your scale when you weigh yourself, it is to FEEL BETTER. And, who doesn’t want to feel better?
It’s easy to do, you can go out to eat, you can eat on a weird schedule and you can eat late at night. Upset because of your child’s ARD meeting? You can eat if you want to. At the hospital again because your kid had another seizure? You won’t be doing that event drinking a portable shake or a bar that substitutes for food. Unless that’s what you want. Nothing is off limits, so you could. But why would you want to?
You can look at the link below for the full set of instructions. And I also recommend you Google it for even more information but take a look at this first. I have no affiliation with anyone and will make no money if you click on it, use it, reject it, or whatever. It’s just for your information.
Oh, a couple of more things that we added to the challenge, which you may want to incorporate into your plan. We allowed no alcohol for thirty days. It was encouraged that you drink half your body weight in ounces of water (I decided to just drink eight 8 oz. glasses a day). We tried to eat AT LEAST six different kinds of fruit and vegetables every day (eating the rainbow). Workouts were, of course, encouraged. Stretching and/or yoga for at least 10 minutes a day was separate from workouts (and FABULOUS for all of us stressed out caregivers with tight necks and backs from lifting our children, getting yanked, etc.). A minimum of seven hours of sleep was part of the challenge (As a caregiver, I often sleep that much but it is all broken up due to my son. We decided that, for me, if I accumulated 7, I was OK). And, finally, that you should try to be completely compliant to the meal plan. It is almost IMPOSSIBLE TO CHEAT on this plan. If you eat the 800 Grams, you are good, no matter what else you eat. Of course, if you want to lose weight, making healthier choices with the rest of the food will get you there. But, remember, you have already edged out some food you would normally take in during your day because of all the fruit and veg you are going to be eating.
This plan takes away everything I hate about dieting, even the focus on the scale. Because it is NOT A DIET. It is a WELLNESS PLAN. And, as a caregiver, it came along for me at exactly the right time. My goals have shifted. Yes, I would love to rock a bodycon dress and feel comfortable in a swimsuit but my real, number one goal? To be my best, strongest, healthiest self to care for my son with special needs.
Try it, for your own self care. Because when you take care of yourself, by extension, you take care of your special needs child better. And every caregiver wants that.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
I feel tired and sad. I want to take a nap, not that I need another reason. It’s a lot of pressure to do everything that we do as caregivers and also have to educate the world.
But if not us, who? Who will change the world for our children? Who will point out what can hurt them, words that are so ingrained in our society that people don’t even realize what they are saying?
So, what happened? A woman who I think is absolutely lovely, who was working hard at overcoming something that she personally feared, surrounded by strong women who were cheering her on, described her own fear of the situation thusly: “This is SO RETARDED.”
She meant that it was STUPID and SILLY that she felt what she was feeling. It was absolutely evident to me that her word choice was not meant to be a put down or a slight, in any way, of our amazing special needs community.
But it was.
What to do? I had to stop and really think about it in the moment. I took a step back from the group. Should I say something?
Of course I should. But…
-she didn’t really mean it as a put down.
-it was obvious to me that she had no idea that it was offensive.
-the space and place we were in was not a place where I wanted to talk about this, it was MY place to escape all this and do some self care.
-I was tired (but when am I not?).
-I had so much on my plate already, why do I HAVE TO BE THE ONE? (Because, if not me, who?)
I am very good at faking being extroverted but I am actually introverted with the addition of anxiety disorder. It is not easy for me to open this dialogue in the best of times. But, knowing this and having dealt with it before, I do have a sort of rehearsed, adaptable script.
I went for it.
I approached this amazing woman, who had no idea what was coming, and said, “Can I ask you a question?”
“Of course.”
I gathered up my nerve. “When you were working just now, you said, ‘This is SO RETARDED.’ What did you mean by that?”
I could see on her face that the light bulb hadn’t gone on yet that this might be an issue. She replied, “It was just so silly and stupid that I have this FEAR.”
“So, you used the work ‘RETARDED’ to mean stupid?” Still no change in her expression.
“I guess so, yeah,” she replied.
I dove in. “I was wondering if you could do me a favor. I am a special needs mom.” Here, her expression changed. NOW she saw what was coming.
I continued. “I am trying to change the world, one person at a time, for my son. I would ask that you consider using another word instead of retarded. I would love for my son to grow up in a world where he didn’t have to hear that in every day conversation. I’m not even asking you to commit to this change, but I would greatly appreciate it if you would just consider it.”
She said, “I didn’t mean anything by it. I hope you are not mad about it.”
I said, “I know you didn’t mean anything by it. I am not mad at you, I am mad at the world. So I want to change this, change the world. For my son. Would you consider changing the word?”
She said, “I absolutely will.”
I thanked her.
By asking someone to CONSIDER a change instead of DEMANDING it and explaining the reason why, I feel like the conversation is more effective. Also, approaching the situation with a kind and open heart (which is hard when you feel slighted) makes a huge difference. But, it’s still hard. Especially when you are living the special needs life, are perpetually tired, not always feeling patient and not always feeling up to the task.
I felt like it went as well as it could. Especially since, she really wasn’t even aware of how what she said could be taken (which is not always the case, some people are COMPLETELY aware of what a put down it is).
My beautiful eight year old son has nine different special needs diagnoses, but being stupid isn’t one of them. He is brilliant and beautiful and amazing and even when I am tired, I will try to change the world for him and everyone like him. They deserve to live in a world where their very existence is not a put down but a celebration of what they ARE able to do.
In a world of about nine billion people, one down. We only have 8,999,999,999 to go. I could use a hand if you are feeling up to the task.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
Our son, Kai, is turning eight years old next week and has nine different diagnoses. The big three are Duplicate Chromosome 16, PVL (periventricular leukomalacia, damaged white brain matter) and Autism.
Today my husband and I took Kai and his older sister Amaya, who just turned ten, to an event that was put on by the Crossfit that I attend. It was a fundraiser for one of the members, who is currently kicking cancer’s ass. It included a workout (which I opted out of, because we had the kids) as well as a lunch, live and silent auctions and sweets to buy. It also had some kid activities. Although it sounds fancy, it was put on in the afternoon at a local park. It was beautiful but also casual.
In the past we would have stayed home and not attended events like this. Or, one of us would stay home with Kai and the other would go and Amaya could choose. This was because we could never predict what would set Kai off, cause a meltdown, a tantrum, or other behavior that could be disruptive. However, in the last couple of years, we have gotten better at this as a family. And Kai is getting better at outings. So we went.
Kai travels in a wheelchair even though he has no physical need for one. What Kai needs is a safe place. And it was either a stroller that fits his body size, which starts at $1,000, or a wheelchair for $150. Since Kai is low functioning and is perfectly fine with sitting in the wheelchair, having no feelings about it whatsoever, we went with the more affordable option. He also travels with a tablet. Outings with the tablet to occupy him last way longer, go more smoothly and tend to reduce tantrums. I am aware that too much tablet time is unhealthy for him and am sorry to say that we have completely fallen into this hole that at some point we are going to have to dig ourselves out of. But, right now, he has the tablet almost all the time. In case you ever thought otherwise, we aren’t close to perfect at this gig. We also travel with a backup tablet for when the first one dies, a hotspot, a quick charger and a full backpack with diapers, wipes, food, changes of clothes, and lots, lots more.
Suffice to say that Kai did beautifully. He danced with me to the music that was playing, ate a piece of cake, allowed people to greet him (and gave some eye contact), and seemed to enjoy himself. But we also noticed that between the music, the lights that were strung up and the people, Kai was getting very stimulated. It was causing him to stim quite a bit. He was endlessly rocking, did some throat punching and got his parents to clap over and over.
When Kai began to give signs that he was starting to tire of being out (we call this running out of Kai minutes), we said our goodbyes and took our leave. We headed out to the van, got his wheelchair put away, Kai in his car seat, Amaya settled and off we went toward home.
And then Kai’s tablet died. Kai started to fuss and I switched the dead tablet out for a fully charged one.
All hell broke loose. Kai had a complete meltdown including crying, screaming, throwing down the new tablet, rocking, turning sideways and more. We weren’t sure why but we did know he was overstimulated and probably tired. We were about five minutes from home and tried to talk him down the whole way, to no avail.
When we pulled into our driveway, Kai refused to get out of the van. He was screaming and crying, his hands were over his ears and he was sideways. I reached in and picked up all seventy pounds of him (Thank you Crossfit! I didn’t get hurt. This is why I do it!) and carried his squirming, screaming body into the house and set him down on the couch. Daddy tried to soothe him, tried turning on the television, fought with him because Kai wanted to use a tablet that was dead, sang to him and more as I changed him out of his clothes, changed his diaper and put him in cozy, clean pajamas, with him wriggling and screaming all the while. Then I carried him into the bedroom.
Amaya waited it out in the other room while Mommy, Daddy and Kai worked to soothe Kai. We let him try to calm himself, talked softly to him, wrapped him in a favorite blanket and both Mommy and Daddy took turns singing with him. For about an hour. Until finally, Kai returned to us. And after all of this, Daddy went off and found a different tablet that had been sitting in the cabinet in the kitchen.
Want to know what set off this epic meltdown? The tablet that I had handed Kai in the car had a case around it that was an orangey-red color.
Kai wanted blue.
Had he not already been overstimulated and tired, Kai may have been able to signal the problem to me but he wasn’t capable of it at that point. So he did what he was able to do. He showed us, by melting down and having a tantrum, that there was a problem.
And then, it is up to Mommy and Daddy to figure out what that problem is.
Some of you reading this are thinking- what a hard, stressful situation! And some of you are thinking- wow, the tantrum lasted for only an hour? YOU GOT OFF EASY. MY KID CAN GO FOR DAYS.
Both of these perspectives are true.
After all of this, even though I am tired, I am grateful. We MADE SO MUCH PROGRESS. Yes, it is two steps forward and one step back. And yes, the epic meltdown/tantrum is exhausting and difficult (especially for Kai, who I feel so badly for when he is going through it – it can’t possibly feel good). But we were able to go out as a family! We weren’t able to do that for years.
If you are at the stage where you feel overwhelmed and exhausted, where you can’t imagine ever being a part of society again, please know that you aren’t alone. As you and your child grow,change and evolve together, it will get easier. You’ll find ways to make it happen.
I am so proud of you for everything that you are doing to be the best caregiver you can, even if today that only means that you showed up. Showing up is everything.
Two steps forward, and sometimes, one step back. You are still progressing. Focus on the progress and, as you are able, let the rest go. You’ve got this.
P.S. – Kai just started up again. Time for another round of rub the booty! And, pat the booty! Sigh.
Be well.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
When you think of amazing life milestones, one of the major things that they have in common is hope. Getting engaged gives two people a sense of what is possible in the future for them together. A wedding is the next step in that. A teenager going off to college, someone buying their first home, all of these things and much more are doorways to hope for good things to come.
Nothing is a better example of this than having a child.
Going through a pregnancy or an adoption and having a child is the ultimate in hopes and dreams. You wonder – what will the child be like? What will their interests be? What will they achieve? Will they change the world? Become a leader? An artist? A doctor? You fantasize about everything that your child can possibly be.
Except a child with special needs. No one fantasizes about that. No one hopes for this for their child. And most of the time, it doesn’t enter the consciousness at all that it could be possible, except as a fleeting thought that is easy to dismiss. Nah. Not MY kid.
So when it happens, there isn’t a whole lot of hope present. Rather, it feels as though it is the dashing of hope. The dashing of dreams.
It feels that way because what you envisioned may not come to pass. But your vision was a fantasy of the person your child could be. Not who your child is or will be.
Just because your child has special needs, even if they are low functioning, like my son, it doesn’t mean that there is no reason to have hope. In fact, a lot of the hopes you can have for your actual child will be similar to the hopes you had for the child you envisioned.
Your child with special needs can be healthy (or healthy, for them). They can be happy, especially if they are honored and valued as whole and complete people (which they are, in their way). They can give to the world (things like joy, companionship, insight, and whatever their individual gifts end up being). Just like a typical child.
It probably isn’t going to look the same. But that’s OK. Every child is unique. Typical or atypical. And there is always hope for good things to come.
Don’t give up hope. Re-envision it.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
I was scrolling through Facebook and came across the question – What is your favorite thing to do on a day off? It stopped me in my tracks.
Day off? What’s that? I am a special needs Mom. I do not work outside the home. And my son goes to school. But because he has had seizures in the past, I am constantly on call. 24/7/365. So even if I want to nap during the day, I have to leave the ringer on in case the school calls.
When I try to think of what I do, I can’t really tell you. I often feel like I DON’T DO ANYTHING. I am just ever present. I am here for interaction. Diaper changes. Food dispensing. Love and affection (which I affectionately love, don’t get me wrong). Teachable moments. Laundry, dishes, cleaning (none of which I excel at, have organized, mastered or particularly care about, if we are being honest).
If I stay at home and don’t work outside the house, financially we receive affordable health care, diapers provided by Medicaid and other benefits. Our financial situation is close to the bone. But if I work outside the home, we lose the subsidies and extra help. All of our expenses then go through the roof. So, in order to make it worth my while to work outside the home, I have to earn an income that would be difficult to find, certainly unavailable in my chosen field of education. Same goes for my husband, who is battling a long term illness.
So, we don’t. My husband and I are both stay at home parents.
Right around the time that my son was diagnosed, we cared for my mother who had Alzheimer’s disease. I went to work, my husband stayed home to give care. I used to go to work to relax, if you can believe it, as I taught PRE-K. That was the amount of stress and pressure that was at home.
Nowadays, with my Mom gone and my son in school during the day, things are less pressured but the pressure is always still there. I am ALWAYS ON CALL. Even if nothing happens. Which means that I never completely relax. EVER.
I just stopped writing for a good twenty five minutes to change a poopy diaper, dodge an epic meltdown because I cut off the milk supply (it’s almost bedtime) and finally settled back in my chair while my son works off his anger at being told no in the bedroom. OK, I guess THIS is what I do.
But getting back to the favorite things to do on a day off, I remember back before I was a special needs Mom and I HAD days off. I liked to sleep in, read, take walks, go to garage sales, meet friends for coffee and other simple things. I have never been one to need copious amounts of adventures, although I certainly had my fair share. Simple appeals. Especially now.
Thinking about this makes me realize that for the longest time I didn’t do any of those things. I just relentlessly focused on my son, his needs, his therapies, his choking, his lack of progress and what I needed to do to FIX things. Eventually, our new normal settled in. And I missed myself.
But I realized that having a day off wasn’t going to happen again for a long time, if ever. So there had to be a way to still enjoy life in our new normal. So I created “pockets off.” That is, pockets of time to be off.
I actually just named it now. I didn’t realize that I was doing it. But now I see that I did.
During the school day, when my son is gone, my husband and I try to have date time. We may go out for breakfast or go to the gym together. If we nap together, the phone has to stay on, which means any phone call we receive will interrupt us but if we take turns napping, the napper can give the one staying awake the phone. Then the one sleeping will only have to be disturbed in a true emergency.
Bedtime is reading time. When everyone finally gets settled in (no small feat!), I read. I also try to read during the day when I can.
If you aren’t getting a day off any time soon, is it possible that you could find a pocket of time for yourself? Even if it is a short fifteen minutes? What did you used to do on a whole day off that you could modify in a shorter time span for yourself right now?
Instead of meeting for coffee, maybe you could Facetime a friend, coffee in hand. Instead of going out to a movie, Netflix means that you can pause as many times as you need to or even come back to it later. Microwave popcorn optional. If you work outside the home and parent a special needs child, maybe you could arrange to leave fifteen minutes earlier at the end of the work day and just spend the time on a park bench, until it is time to pick up your child. The tendency will be to cram in yet one more thing in that fifteen minutes but try really hard not to.
Even if you have absolutely no time and must multitask, you could listen to books on tape or podcasts during your commute. It is so hard to think about yourself when you are always focused on the most important person in the world, your child, but caring for yourself makes you a better parent. So, in the end, your child benefits from this, too.
These pockets of you time are important. They refresh you. They remind you that although you are a special needs caregiver, you are still you.
What do you enjoy doing during your pocket of time off?
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
It is a new year and a new decade. Just a little over a week in. A little over a week ago, people were talking about how 2020 was going to be their year! It was going to be so much better than 2019! They made resolutions! They made decisions about making changes! They were pumped!
It is a little over a week later and they are already “disappointed in 2020.”
No pressure on the new year. But they wanted their changes, their accomplishments, their blessings – right NOW.
Realistic? Not so much.
A goal without a plan is just a wish. I didn’t write that but I see it all over the place and if I knew who did write it then I would give them the credit. Since I don’t, let us all just take a moment and admire the nameless person who wrote this.
Because it is SO true.
But what happens when you make a plan and it doesn’t work out the way you wanted it to?
Right now, all over the country, people are joining the gym and exercising like mad. THIS IS THEIR YEAR to get in shape.
All over the country, special needs parents are working hard with their children, thinking that THIS IS THE YEAR that they will learn to count. Or walk. Or eat without choking. Or learn to speak. Or FILL IN THE BLANK HERE. Because THIS IS THEIR YEAR.
Right now, people are enthusiastically joining dating websites. They are going to meet their life partner. Because THIS IS THEIR YEAR.
Does this sound familiar to you? Do you see it happening around you? Do you see yourself doing it?
There is SO MUCH PRESSURE.
And then comes the “failure.” Another breakup. A missed workout. A “bad food” event. Your child knew how to count to five yesterday but only to three today.
So what do people do? They quit. And suddenly 2020 SUCKS DOG.
Here’s the thing. I like goals as much as anyone. I make them for myself all the time. But I have never met anyone who reached a goal in a smooth, perfect, flawless way. Have you? Ever met someone who reached a goal without ANY setbacks. No mistakes?
The key to achieving a goal is to overcome a setback, whether large or small. The people who win at this game are the people who fall down and then get back up and try again. Consistently. These achievers also are willing to give up the method that they were using to get to the goal and try other things to get there. They are willing to be flexible in their methods. They will try other paths to get to their goal.
Here is an example. When I was still teaching, I once had a student who was in the process of being diagnosed as special needs and put into a program but hadn’t quite gotten there yet. She was able to learn but it happened VERY slowly. I was working with her one on one and she was learning how to count. We counted objects, used Touch Math, used charts, counting videos, did exercises while counting and more. Most of it seemed to not be working. She would occasionally be able to count to a higher number but would often forget what she was able to achieve during the last session. And then I finally got her to be able to count to twelve consistently. Every little step was a victory and we celebrated like mad whenever she was able to do something new.
And then all progress stopped. For SIX WEEKS.
Think about working intensely on something and seeing no visible progress for SIX WEEKS. Would you want to quit?
What if quitting wasn’t an option?
We couldn’t change the goal. She needed to get to thirteen. But how we got there was FLEXIBLE. We tried all kinds of things and threw out what wasn’t working. We took breaks. We tried new things. Because IT IS NOT A FAILURE TO THROW OUT WHAT ISN’T WORKING AND FIND SOMETHING THAT DOES.
You know what guarantees that it isn’t going to happen? When you stop trying.
The day my student counted to thirteen I felt like I won the lottery.
I urge you to be flexible in achieving your goals. Allow yourself room for setbacks and know that if you continue to persist you will have a comeback. As a very wise person that I know says, it is about progress, not perfection.
Recognize that the tiniest step toward your goal is a win.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
Its not easy and not as I would like it to be, but I’m getting it done.
My son is seven years old and has special needs. He has eight different diagnoses. For the last couple of years I have been a stay-at-home Mom and a blog writer. And one of the things that I have written about is how easy it is to let yourself fall by the wayside when everyone is counting on you to make sure that THEY are OK.
Today is a perfect example of this. My husband is sick. He has a long-term illness that he has been working on recovering from for the last couple of years. But in the last 24 hours, he got a vicious stomach flu that has been going around. Yesterday was Christmas. And today we were supposed to leave to drive to Florida from Texas to help my father with some stuff he is struggling with at his new place. With our son, of course. And our neurotypical 9 year old daughter.
The goal was for us to pack in the days leading up to Christmas, enjoy Christmas and then leave the next morning. It’s the day after Christmas. We haven’t left.
My husband was vomiting more often than every hour, all night long. I was up with him for every single episode. And today, I am caring for my children, still trying to get organized, and also caring for my husband. And drinking coffee like its oxygen.
I am tired. I keep staring at the word “its” on the page, trying to decide if it should be “it’s.” Well, guess what? If it’s wrong (its?), then its wrong (it’s?). I usually know which is which and what goes where. But this is what I am capable of today.
So, on to the topic of self care. I began working out a year ago. To get in shape but also because I needed to get stronger. I was getting hurt taking care of my son, who is not trying to hurt me but as he grows bigger it gets harder to take care of his needs. I am proud to say that it is working! I am not getting hurt. But in order to progress, I work out five days a week. And guess what? Today is supposed to be a workout day.
This is for my son but it is also for me. It is my self care. But husband is sick in bed, son needs taking care of, daughter is hungry, dishes need to be washed, clothes need to be washed and, oh, did I mention, we still may leave on this trip in the next day or two? The packing isn’t done. And right now, it’s all on me. And I am exhausted.
Raise your hand if you would skip your workout.
It’s so easy to do. But, you see, if I don’t stay consistent, my stress levels go up. My body doesn’t stay strong. I’ll start getting hurt again. So I need to get creative. I can’t go to the gym or Crossfit today. I can’t workout outside today because I need to be in the house with the family. And I can’t workout consistently for a certain time period because I keep getting interrupted (diaper changes, vomiting, cooking, cleaning, clapping for the letter U, etc.).
I NEED to do my chosen self care. It is NOT OPTIONAL.
So I am doing exercises that I can perform in sets of twenty. 300 reps. They are including pushups, burpees, situps, clams, squats, arm circles, calf raises, glute raises, plank shoulder taps and more. I am doing them EXPECTING TO BE INTERRUPTED. And when I am, I just keep count and finish when the interruption is resolved.
Is it ideal? No. Is it what I usually do? Not exactly. But I FEEL BETTER.
When I feel better, I am calmer. I am able to better care for my family.
I am NOT saying that you should do these exercises. I am saying that you should remember to do whatever it is that YOU do for self care. Want examples?
-Been up all night with a screaming child? While you are standing there waiting for your coffee to drip into the pot (because one cup at a time at this point is ridiculous), take some deep breaths.
-Put on calming music as you handle things if it is soothing to you.
-Drink more water as you run around like a nutball trying to keep it all together.
-Pause. If you can, just pause for a minute.
-Eat something healthy. Something you don’t have to prepare. Like a piece of fruit. Just throw it into your day.
Yes, people do all kinds of things for self care. They get their nails done, their hair done, workout, go to a movie, read enjoyable fiction. But when you are pressed, running around without help, without a break, when your child just painted with their poop (again), when you are fighting on the phone with insurance companies, dealing with sick family members, trying to keep it together and not have a meltdown, you may not have the time, energy or funds to do any of that. So keep it simple. But keep YOU in your day. It will help you, I promise.
P.S. – I had to pause before I wrote that last paragraph, bathe my son, redirect him when he engaged me in a battle of wills about whether or not he was going to get out of the tub (I won but my pajama pants are wet – you don’t think i got dressed today, do you?), dress him, check on my husband (sleeping), discuss with my daughter why today is just not a good day to play Uno (guilt, anyone?) and answer the door and give my adult stepson a shopping list because I can’t leave and don’t have enough stuff in the house because we were going on a road trip to help my Dad, remember? Just another day of raising a family and living the special needs life. But you know all about that, don’t you? XOXO
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
I live in a small town. Recently I was at a smoke shop to pick up a bottle of CBD oil for my son, Kai, who is seven years old and has eight different special needs diagnoses. The woman who was behind the counter was a friendly, chatty, helpful type and we got to talking. She used to work at my son’s school, which is an all special needs campus. I was excited to hear this because I really love Kai’s school. When I asked her what her position there had been, she said, “Oh, I was just an aide.”
I immediately called her out on it. JUST AN AIDE? As if it is a small, insignificant thing to work with special needs kids, every single day as an assistant. Why doesn’t she know that she is SUPER IMPORTANT in my son’s world and the world of all students, special needs or typical? That her just showing up means my son has extra support, the classroom has extra support, and the school runs more smoothly and better because she is there? Why doesn’t she know that there is nothing more significant to a special needs parent than to know that sensitive, loving staff members, title not important, mean that my son has an awesome day and his mom and dad can relax a bit, knowing he will be loved and cared for?
This woman said that she wished that the director at the time (who has since retired, so we’ve never met) had told her this. That she felt inept. Out of her league. Unimportant. Unnoticed and unsupported.
Let me tell you something. As a former teacher in general education of fifteen years, the aides and support staff are the people who make the world go round. Without good people in place, the whole thing will fall apart. The jobs are necessary and important. And the people who hold them are some of the hardest working people I’ve ever met. They are also not paid nearly what they are worth.
Please tell these people that you appreciate them. Thank them every time you see them. They deserve so much more but recognition is a nice start.
Now, think about this. Do you do this as well? Do you describe yourself as “just a special needs parent?” Or maybe, “Just a stay at home Mom/Dad?” Do you use the word JUST to describe yourself?
If no one has told you lately, what you do is important and you are noticed by those around you. Just because they don’t tell you so doesn’t mean that it’s not true. So, please, know your value. Know your worth. Whatever it is that you do, dream, plan, are, don’t describe yourself as “just a…” anything. You are SO MUCH MORE THAN THAT.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
The end of the year, and the decade, is approaching quickly. Many of us think about all of the things that we have wanted to accomplish while living the special needs life. Some of them we have completed, other things started and waned, and some have fallen by the wayside. Our lifestyle doesn’t always allow for completion, what with the endless time and energy that we invest in the ones we love the most.
As we close out the year and begin to think of the upcoming one, we are prone to making New Year’s resolutions. And, often, within a few weeks, we set out with resolve and dive in. And then we realize that although we have good intentions, it may not be practical to go balls to the wall full speed ahead. Especially when we are probably functioning on less sleep than is optimal and dealing with the endless meetings, doctor’s appointments, therapy appointments and so on.
And so, this time around, might I suggest something different? Instead of resolutions, perhaps we should examine and readjust our priorities. Instead of adding ONE MORE THING to our ever busy lives, why don’t we focus this year, instead, on what we can remove? What just doesn’t have to be a priority?
If you think about all of the things that you have committed your time, effort and attention to in your daily life, is there anything that you could let go of? What commitments just aren’t serving you well anymore? By deciding what is really important to you and what is, well, just not, you can then take steps to relieve your burden.
For example, I NEVER volunteer in my typical daughter’s classroom anymore. Does that sound awful? I spent fifteen years as a classroom teacher and am now a stay-at-home typical and special needs parent, a writer, the wife of a husband recovering from a long illness and a committed Crossfit enthusiast (which all began because I was getting hurt caring for my son). Although I know that as a teacher I appreciated parent help, I have talked that talk and walked that walk. I know that I have helped hundreds of students and families in the past and may again in the future. But right now, this is something I needed to take off of my priorities list.
You know what stayed on the list? I show up for my daughter. At every school event and lunch at least once a month. She gets so excited to spend that extra special time with me. I doubt she would remember much about my volunteering to cut out laminated teacher things, but she will SO remember our times together at school events (Full disclosure – I have volunteered to send in extra supplies when needed. I know that this is valuable, too, doesn’t usually cost much and takes little time).
When examining priorities for yourself, it can be difficult to decide what you think is important and what society is telling you is important. Remember, society doesn’t have to live your daily life – you do. Make cuts accordingly.
When you prioritize and cut your list down to what’s really important, you can choose what your focus for the coming year will be. And you may have more time to actually act on this decision.
Upcoming priorities for this year for me – get certain financial things situated for my son with special needs; finish editing my book; laugh and play more; rework my budget to allow for the new; continue getting physically stronger to care for my son; enjoy my family. Oh, and spend more alone time with my husband.
Everything else? I’ll get there eventually, but it’s not a priority. And that is my New Year’s resolution.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!
