It’s 2 pm. I get a text from Addie’s nurse that she won’t be able to come in that night for the third night in a row. She’s sick and she knows it’s best for Addie if she stays home until she is well enough to come back to work. I tell Mathew and we come up with our plan for the night. I’ll make dinner, put Lawson to bed, give Addie her nightly feed and draw up all her medicines, and then we will bathe Addie and move her to her room together for the night. We pull out her bed to give Mathew room, dress her, do her trach and g-button care, 3 nebulizer treatments, give medicines, and hopefully finish by 10:30 pm. There won’t be time to relax tonight and Mathew will likely get little sleep as every beep of Addie’s pulse ox will wake him for fear that something is wrong. In the middle of the night Mathew wakes me and says Addie’s trach needs to be changed. We get it set up, change it, and I crawl back into bed. We wake up exhausted. This is just one scenario we’ve had in the past. But even on days or nights with nurses, we feel caregiver burnout. Caregiver burnout is real with special needs parents, but our children always come first, and we are happy to do whatever needs to be done for them.
Parenting is stressful for anyone. Even parents of the best kids have their challenges, but parents of children with special needs deal with stress on a whole other level. Being a parent to a child with special needs can be like having a full time job. In fact, it’s like having two full time jobs. Making phone calls to insurance or medical companies, responding to emails regarding school or therapies, going through our calendars to see what times we can make appointments work- it’s constant. This doesn’t even account for the revolving door of people that are in and out of our homes all day and the lack of privacy if you’re lucky enough have nursing. Without support or without the kind of support the special needs parents need, it’s easy to see how they can head down the path of caregiver burnout- and fast.
Did you know that special needs parents typically have chronic stress relating to raising a special needs child? It’s magnified more when the parent has caregiver burnout. You may find that the special needs parents you know have anxiety, PTSD, depression, intense fatigue, weight gain, weight loss, medical issues, low sex drive, or insomnia. They even are at higher risk for divorce. In our own lives, I’ve seen this even start in Lawson. When Addie’s pulse ox beeps more than a couple times, he runs over to Addie to make sure she’s ok. He’s not even 2 yet. Through it all, our children with special needs are our pride and joy. Despite caregiver burnout we wouldn’t change our children or our situation for the world. If that means doing all that we need to for our children, special needs parents will do it in a heartbeat.
Looking for signs of caregiver burnout? Caregiver burnout for special needs parents can look like:
1| Mentally checking out. I’ve mentioned this before but you may find special needs parents on their phones just to take their mind into another world. Special needs parents experience nearly every emotion every day and it is exhausting. If you find yourself constantly trying to mentally check out, it’s time for a break.
2| Suffering from memory loss. A couple years ago, I spent some time trying to work on myself and went to therapy. It was really helpful. I mentioned to my therapist I was having trouble recalling information like stories that were told to me, conversations I’d had with others, and more. She told me that it was very common with special needs parents with caregiver burnout to suffer from memory loss because the brain was in constant trauma mode. Wow.
3| Inability to rest or relax. Special needs parents typically have a hard time resting or relaxing. Our minds are constantly focusing on our children’s “sats” (aka saturations), plans for the next day, worrying about weather, prepping medicines or feeds, and even worrying about our children’s attitudes. We dwell on the day that just happened and can fixate on whatever may happen the following day.
4| They’re frequently sick. Many special needs parents are sick often. When you combine lack of sleep, not eating healthy meals (because they’re usually so busy or in hospitals where takeout is easier), it’s very easy to get sick. Special needs parents don’t take care of themselves either and continue to do all they can for their children without taking a break to feel better, which can make things worse.
5| Rarely spend time with friends or doing hobbies. Some special needs parents don’t have nursing, family that live close by, or even family or friends that are involved enough to know the care their child needs. It is easier for special needs parents to stay home instead of spending time with friends or doing hobbies simply because taking the time to train someone or “get them up to speed” takes too long. Alternatively, if a special needs family does have these resources available to them, they may find it easier not to leave their child because the stress of worrying takes the fun out of the things they love.
6| Not taking time for self care- emotionally, physically, and spiritually. As you can see from the first 5 signs, special needs parents don’t take enough time for themselves. Many times they don’t have time to go to therapy sessions for themselves, workout at the gym, or spend time in prayer/meditation. After a long day and much more to do before bed, special needs parents with caregiver burnout simply are too tired to care for themselves.
Here’s how to break out of caregiver burnout for special needs parents:
1| Ask for help. This one can be hard for special needs parents but is very important. Research respite care where you live, talk to nurses about increasing hours if needed, discuss with family/friends how they can help you. IT TAKES A VILLAGE! Whether someone bringing freezer meals helps you best or someone watching your child for an hour so you can take a hot shower for once, ask for help.
One of the best gifts I ever had was from a friend, Suzanne. When our family was going through a particularly hard time Suzanne (who I didn’t know well at all) asked if she could come bring dinner to take stress off my plate. She held baby Lawson as I ate and we chatted. She then encouraged me to take a long bath while she watched Lawson and Addie, did my dishes, and threw out my trash. It was such a blessing. Another instance was when my friend Juanita said the Lord called her to come sweep my floors. She had never been to my home before but came over, swept, and took that burden off me. What may have seemed so small to these ladies was an incredible blessing of much needed help for me.
2| Take care of your health. You can’t help others well when you don’t take of yourself. One way that Mathew and I take care of our health is by using Young Living essential oils and supplements daily. Despite lack of sleep and the toughest of situations, we have found ourselves healthy for several years now because we use our oils and supplements daily, eat lots of green veggies, and limit caffeine. Scheduling regular doctor appointments (for mental and physical health), eating healthy foods as often as possible, exercising (even if you need to walk a few laps around the house) can make a big difference.
3| Find an inclusive church home. I can’t express enough how helpful finding a church home can be for special needs parents experiencing burnout. Our current church has a program for members with special needs, and although we haven’t taken advantage of it, I’m so grateful it’s there if we need. Bible study has also been incredibly helpful for me, and it’s something I make sure to carve out time for weekly. Even when Addie was in the hospital Mathew encouraged me to make sure to attend Bible study as a way to break through caregiver burnout. Just as you make sure to schedule time for your child with special needs, it’s important to do the same for yourself so you can seek social support
4| Make plans to do something fun. This one is important. As hard as it is to get away, or as hard as it is to get away and not stress, it is SO important to make plans to do something fun for yourself. If this means a couple hours to yourself at a bookstore, a run to Target to just browse, or even perusing your local plant nursery, do it. If it means going away on a week long vacation, do it. Whatever “something fun” means to you, put it in your calendar and do it. It’s easier said than done, I know, but even if you can’t get out of the house, think of ways to enjoy yourself in the home. Bring out the board games, invite friends to watch your favorite show together (your friends won’t judge the state of your house- promise), and more!
5| Prioritize your tasks. Making small to do lists can be so helpful for special needs parents feeling burnout. Separate task lists into levels of importance so you can do the most important things immediately and save the less important for days when you have extra time.
Some of my favorite things when I feel caregiver burnout:
Your words are so true. We are blessed, our son is very high functioning but Complex. Jason has ADHD/Autism, apraxia, mild kyphosis, Pectus Excavatum, it goes on. This weekend was trying, he had several meltdowns & did some property damage. By Sunday night I was completely exhausted emotionally & physically. Monday, we found he had turned his Algebra grade from an F to a mid B, in a week. Sometimes you have to be thankful for the small things