The need of respite for special needs parents is probably the most overlooked necessity we have. Yes, there are many blessings that come from having a special needs child. But to be honest, it is a lot of work. Hard, never-ending work that can suck you dry physically, mentally, and emotionally. I’m not going to lie or sugar coat it. In my opinion, this is the most difficult type of parenting a person can be faced with.
Why Respite is Important
As special needs parents, we are faced with many things: therapies, appointments, heavy lifting, IEP meetings, bathing, dressing, toileting, exercises just to name a few. Then there are the emotional stress factors like: is she making friends at school, is she being included, will she be able to participate in Sunday School. Day in and day out these are our realities. From the moment we get up in the morning until bedtime this is our life. The real kicker is that unlike all other children, our special needs kids don’t grow out of their dependence on. This is our never-ending reality. And this my friends is why respite is so important.
Please don’t get me wrong. I love Ladybug and wouldn’t trade her for anything. My feelings, however, do not change the fact that this is hard and we need respite. Rest is good for the body and soul. Without taking moments for respite you will burn out. I’m not saying you might burn out someday in the future. I’m saying it WILL happen. Trust me, I’ve been there. In fact, I would say I’m on the verge of being there now.
Danger of Burnout
Burnout happens when you’ve reached your limit. The stress is high and you’ve been operating this way for an extended period of time. Eventually, you will meet the end of your rope. You’ll have nothing more to give. You’ve finally met your breaking point. When you’re falling apart emotionally from sheer exhaustion you are officially burned out.
When you reach the point of burnout it is easy to focus on yourself and what you’re feeling. Those feelings are completely justified. However, let’s take a moment to look outside of ourselves during times of burnout to see how it affects others.
Our family notices and feels the extra stress and frustrations coming from you. It’s easy to become short-tempered toward our children and spouse. I get where you’re coming from, I really do. We need to be careful not to allow our burnout to negatively affect them. You’ll also probably see a decline in motivation to do regular day to day tasks.
Value of Self-Care
I know it is very difficult, especially for special needs parents but we must manage to practice self-care. If we don’t take care of ourselves we will be much more likely to experience burn out, probably even frequently. Regular self-care can be pretty simple. Maybe it’s a half an hour of quiet time. Other’s might enjoy reading a book (not related to your child’s diagnosis). I enjoy soaking in a hot bath or watching tv. Whatever you find to be relaxing to you make sure you get that self-care in each week. You can’t take care of everyone else if you are burned out, so take some time for yourself.
Value of Respite
I also believe it’s very important to find some time for respite when you can. Respite is different from self-care or getting a break in that you completely get away. Respite is not sending the kids to grandma’s so you can run errands or clean the house. No, respite is taking a break from any and all responsibilities. As special needs parents, we need to take these moments to recharge. We need rest physically and mentally from the demands on our life. We need to take these breaks to be rejuvenated.
So why do I say we need to get away for respite? For me, if I send the kids somewhere for a day and just stay home all I see is everything that needs to be done. Even if I lounge around binge-watching Netflix all day I see what isn’t done. I’ll be bothered by what I should be doing (even though I should be resting) and then I’ll start feeling guilty for not being productive. This is why I say true respite means getting away.
It doesn’t need to be a big elaborate vacation, you could get a hotel room across town. The point is, you should cut yourself off from any of your day to day responsibilities to truly rest. You should do activities that you are doing just for you. To someone, respite means sleeping all day and ordering room service. Someone else might be rejuvenated by adventure and go hiking. The central point to respite is to get away and do something you enjoy. Do something for you.
Don’t feel guilty
As special needs parents, we give of ourselves each and every day. Almost everything we do goes unnoticed. Not only do you need respite, you’ve earned it. Do not under any circumstances let others make you feel guilty for asking for respite. Don’t feel guilty for sending your kids to spend the weekend with grandma and grandpa. This life cannot be understood unless you are living it.
My husband and I took a vacation together last year to celebrate our 10th anniversary. It was just the two of us. I cannot tell you how important it was to both of us. We got the respite we desperately needed. We also had an amazing time being able to focus on each other and our relationship.
Perhaps one of the biggest takeaways from getting some respite is that we are ready to jump back into life refreshed. Rest and stress relief will have amazing ramifications. Your motivation will increase and you will avoid burnout.
What activities do you enjoy to recharge yourself? I would love to hear them, comment below!
[…] allow yourself to grieve the fact your child may never leave this stage. You also need to make respite a priority. Practice self care without feeling guilty. Remind yourself of the blessings that […]
I had respite for the first time last year 2016 and my daughter is 27 years old, it felt so good to get a break,she went the second time and they sent her back the third day because she was behaving badly and said that they couldn’t handle her so that was tough for me so my Msc begged them to take her again so they will take her for a weekend March, 17,2017 and if she acts up again that will be it for me,it was so hard I cried for days because when they sent her back I had plans to go away for the weekend I’ve never ever been on vacation so if she acts up this time,I will never be able to send her away again because of her behavior,I wish we had respite places that can deal with special needs adults with behavior problems because I know I don’t have the only special need adult with behavior problems,so if anybody is listening please I beg you create such a place for us parents thank you.😊
OH Monique, I pray she will have a successful weekend so you’re able to get away! I wonder if it’s a possibility between now and them to be with her to spend an hour or two with those who will be caring for her that weekend to help her get familiar with them? Maybe she’s scared not knowing what’s going on or understanding why you’re not there? I hope it’s able to work out for you this time, you need a break mama!
Thank you for posting this. Like you said, “this life cannot be understood unless you are living it.”
My son was qualified for respite care; but in my case, it does not feel like I’m getting away to take care of myself. He gets respite when I’m in school teaching, or doing course preparation, or trying hard to read for my dissertation project. I’m a graduate student who has to teach two writing classes, as a source of income for me and my son. I don’t get any rest, no break, I’m constantly tired , emotionally and physically. I don’t how lond I should continue like this. Because of this strenuous situation, with my special need child, we don’t have any time for leisure, for me to play or read to him, take him to a park, etc. I’m failing him and I’m failing myself. When I asked for more help, it seems to people that I don’t need. There is nobody to help me with tasks at home, or driving to his several appointments, most of which are out of town. Nobody to help me with cooking , cleaning, laundry, bathing him, changing him, going grocery shopping, going to the ER (We are actually in the ER right now, and I have slept since last night), etc. because I don’t have any family here. My family is thousands of miles away from here.
So my questions are: how do I define the respite care that my son gets? Is it really respite, if I have to work while he is in respite care? Is there another way to help parents with special needs kids, who have other responsibilities, like work and school, and are single, with no family around ?
My heart goes out to you, I couldn’t imagine trying to do this without family nearby. To answer your question, no I don’t think it qualifies as respite when you need to use that time to work because you’re not getting the rest you need. I’m not sure how old your child is to know how long you’ve been on your journey. My question to you would be is a demanding career path the best choice for you or do you need to explore options? Would moving closer to family mean they would be able to help you if that’s an option? Some states allow for a parent to be the paid care taker of a special needs child which is what allows me to work from home. For me this has been a huge blessing. I know it’s not for everyone though and I hope you’re able to find a solution that works for you. Prayers to you and your child!
I wish I could get this help I been burnt out