I haven't blogged in a while. I kind of disconnected for a bit because I was feeling overwhelmed. I needed to step back and recharge. Now that I'm "recovered" I figured it would be a good subject for the next blog.
When you have a special needs baby the information starts pouring in. One of the things you hear over and over is "make sure you don't get overwhelmed". If you're anything like me you realize how important their advice is but you don't really know how to put it into practice. Hopefully my experience can help.
I think, unfortunately, we have to burn out at least once. I didn't learn where my breaking point was until I was already there. Now I know better. But the first time it's like watching a train wreck. By the time I saw it coming it was too late to stop it. Now I recognize the signs. Next time I start approaching burn out status I can head it off. Everybody is different and you'll have to pay attention to your own personal cues and triggers. I don't want to share my own cues for fear that you'll focus on those and miss your own.
I will share the things that I've found to help keep it from happening though. Things that can also help pull you out of that place. You have to evaluate all the advice you get and see what works for your family. For me I learned that I need to get outside. Teegan is non-ambulatory. He's wheelchair bound and completely dependent on me for his mobility. That can make going places quite difficult. But I can't let that keep us inside. He has a wheelchair and also a feeder seat with wheels. So we can go for short walks around the neighborhood. With his respiratory problems I don't like to keep him outside too long. Especially during pollen season. But I can also put him in his feeder seat and roll him over to the sliding glass door. That way I can spend some time in the backyard without negatively affecting him. I tend my roses and I'm planting a small herb garden. Sunshine helps the body produce Vitamin D and can also help alleviate the symptoms of depression. Just make sure you remember your sunscreen!
If you are lucky enough to have insurance that covers in home nursing, use it! We had a nurse for about 3 months and it was wonderful. Unfortunately the state I live in cut pediatric nursing out of the budget. Even if you are your child's primary provider use the nurse for respite care. Even if you don't go anywhere, just letting somebody else worry about your child's care for a day can be a huge help. Sometimes I was glad just to be able to do the housework with out having to keep checking on Teegan.
Even if you don't have nursing you have to make a way to have some time to yourself. Teegan is what's called total care. He has a trach and he still has trouble breathing sometimes. He requires constant supervision. I wheel him around the house with me. Whatever room of the house I'm in, he's right there with me. So making time for myself is quite a challenge. I just didn't do it for a long time. I thought "I'm not a high maintenance person, I don't need much. I'll be fine." Well, I wasn't. I've come to realize that's just not a healthy way to live. I take small moments here and there, and they add up. I enjoy reading, which is clearly something I can do with Teegan right next to me. But it's easy to get lost in a good book. So I set a timer for 15 minutes. I get a bit of me time and if I get distracted by the story the timer reminds me to check on Teegan. It may not seem like much but believe me, 15 minutes here and there will help stave off the burn out.
So to recap: get outside, use the resources that are available in your area for special needs kids, and carve out time for you. I cannot stress how important the last one is. Maybe because it was so difficult for me to do. Even if it seems impossible there is a way. You just have to find what fits in your life and works for your family.
And please realize you weren't meant to do this alone. Enlist the help of the people that love you. Most of them want to help you, they just don't know how. Let them know what you need. It is my sincere hope that this helps someone out there. Good luck and thanks for reading!
