Overcoming Burnout: Replenishing Your Reserves

Liveblog

Julia Roberts

I'm Julia Roberts. I have 2 kids with learning disabilities and learning disorders. I am fairly good about taking care of myself and so I was very honored to be on this panel.

Susan Senator

I'm Autism Mommy Swami and I've written a couple books about autism parenting. I'm happy to be here and I'm a mother of 3. One is pretty severely autistic. The others are not diagnosed.

Tanis Miller

I am the Author of Attack of the Redneck Mommy. I have Knox who is 8 and quadriplegic. I've spent a lot of time emerged in the special needs world.

Julia: today my gift to you are belly scarves. There are plenty of colors to choose from so don't fight! Go ahead and put them on. We have a belly dancer in our midst! When we talked about this panel... we talked about ways we could wake everyone up and we kinda jumped on it. And that is my gift for you today. I'm going to let Susan take over on our lesson. She even has music.

Susan: Do I really need a mic? Ok... so... everybody pay attention... relax. The first thing I want you to know about belly dancing is that you don't have to be perfect. You can feel beautiful thru dancing and music. It's not strip tease... it's an escape. It's my fun. People say to me that you must have really great abs and i say no. I don't. I'm just trying to get the moves right... hear the music and come up with a dance. I'm going to give you some basic little moves. I'm hoping that it's just a way of giving yourself permission to just have fun. just be who you are. You're not always a blogger or whatever. I'll start the first song to get you in the mood. This one has a slow start. You would start standing still and center yourself. Ok... so you want to have what they call "pretty hands". Hold you arm out and basically look like you're scooping sand with your hand and you'll start to feel how it goes. You should be doing both hands. Start with your hands at the top and just bring it down. Another level and then another level. Standing still... you're setting up your dance. You should be standing up very straight. There's a reason for that. You begin to isolate your muscles. It's up to you which body part that's going to be. If you're moving upper body... you need to be very isolated. Hold your arms out and try not to move anything but your chest. While you're doing your chest movements... you can also be moving your hands. Layer your movements and make them as interesting as possible. Now you can begin sliding your hips. Just your hips. Harden you stomach and push your hips our from your middle. That's why they say it's good for your abs. I've shown you something to do when you're still. Now I'll show you how to do a shimmy. The things about the shimmy is... it's completely non western. It's all about just letting your butt go. In belly dancing you're a woman... you're moving like a woman. The shimmy takes control but it's also about letting go. Bend your knees a little bit and your hips just kind of go.

Tanis: And we expect this during Barack Obama.

Susan: Well... he can learn too. So anyway... those are the still movements. And I've got another song. So what I want to show you is aside from standing still movements is... when you want to start moving... you need to use traveling steps. The way you do a traveling step is like a hip lift. As if you're wearing a high heel. In a movement. Right up. Down. Step. Up. Down. Step up step step. Think about bumping your hips up. I'll show you. You just kind of walk. Like this.

Julia: thank you Susan. So that was to wake you up and maybe think about you. because we're talking about care giver burn out. we talked about areas that have been eye opening for us. There are four areas that have helped us in over coming the burn out. The first ting is humor. My husband and I joke at the most inappropriate times. Like during kidney surgery. To blow off steam. Like in our marriage.... the first to leave has to take the kids. this is really effective in keeping our marriage together. Just things that we find funny in our life. Like when we forgot our anniversary. So we celebrated our 16th twice. Not only does it help us to cope but makes others comfortable.

SSusan2: Humor has had a big part in our life with autism. beginning with something horrible actually. He would wake up laughing maniacally. We couldn't do anything about it. This was 14 years ago and there was no information out there. I got to the point i actually hated his laughter. Meds and therapy helped. But the laughing came back when he was 13. it would happen in a restaurant or in a movie theater. We were hostages. His school would tell us to ignore it and redirect the laughter. But I felt like... shouldn't he be able to laugh and just be taught where and when? But one day I sat down with him on the couch. I was in a bad mood. I didn't feel like doing anything I was supposed to. And I started poking him and tickling him and he started laughing for real and not just for his own reasons. And we ended up laughing together and that was a profound moment of connection. And i thought.. .OMG he doesn't do this to annoy us. He does it to connect. But because of that... I was able to see him as not a monster but as just maybe an annoying kid. And we connected.

Tanis: I base my internet existence on humor. When my son was born he had facial paralysis. When he would cry... he looked blank. He never scrunched it up. He was diagnosed with Mobius Syndrome. I'm 25 with an extremely disabled child. He never smile. Never cried. It was very difficult to connect with that child. We don't realize how often we read the facial cues of those around us. My family was distanced. We couldn't bond with him. One day I tickled him. And my husband said... you're making him cry. And my children said... you're making him laugh! And as long as we weren't looking... we could hear him laughing and not mix up the verbal cues. That's how we as a family were able to finally bond with him. He passed away years later and our family resorted again. Black humor saved the day. And we've encouraged humor in our family. Life is too short to be serious. There are serious issues but never too serious to not make a joke and smile.

Julia: My challenge with people is that they don't always understand it. Mostly I do it to let off steam but also to make others more comfortable.

Tanis: But sometimes people think you're a horrible crazy lady!

Julia: Yes that's the challenge.

Tanis: We've all done psychological assessments. And all of my family passed but me because I was deflecting. I ended up tell thing the guy to bite me. The adoption process ended up being long for us. That's backfiring!

Susan: I wish I had a backfiring example... but when people stare I don't take it lightly. I get angry. I did something a little different recently. I decided to take pictures of the people laughing at my son. People were watching these jugglers and Nat was doing his thing and he has a lot of mannerisms. He's also really cute... so you're compelled to look at him. I am his mother... but still he is cute. I had this huge chip on my shoulder and i was ready to start taking pictures of everyone and post it to Facebook. But that time... nobody did laugh. I'm sure what I learned... but maybe they aren't really laughing at him. I should try to chill and enjoy myself.

Audience: Hi I'm Ellen. I've written about people staring. Lately I've been saying... would you like his autograph and it disarms them. And it helps me a lot to be funny.

Tanis: I usually say... he's giving Helen Keller a run for her money!

Susan: Once he did have a melt down on the beach. I did have the presence of mind to say... Show's over! Thank you!

Julia: So we all use inappropriate humor. Maybe it's just a special needs things. It alleviates stress. The second things we wanted to talk about was hobbies. That was the reasoning behind the belly dancing lesson. For me... it's crafting. And I'm in this crazy little art group of women and i spend 2 or 3 months making these books a few times a year. we change themes... it makes me have a deadline. It makes me be creative. I make gifts. Those are outlets for me and people give me good feedback on them. Those are my hobbies. I'm finding more time as the kids get older that I can go to the store for like 30 mins and that blows my mind that I have 30 mins to myself.

Susan: The dancing was more something I started to do 6 years ago when Nat was still living at home. It was a way to escape without living the house. i could put on the music and shut the door and nobody would see. I'm going to be 50 in a few months and it makes me not feel old. Not a mom. A lot of this not stuff that comes into play. It's easy to do. You can just try it a little bit and it led to collecting costumes and going to shows and meet ups and it's expanded into a terrific hobby. Now I can mountain bike because my son isn't living at home. I like the extremes.

Tanis: Hobbies... hmm. Because Knox is quadriplegic he's constantly in an unsafe environment. I went to Europe with another of my children and returned to Knox having 3rd degree burns. So I have to be very near him all the time. Hobbies became a challenge. He has a tilt wheelchair that doesn't navigate and we need big equipment for him. So what could i do around the house to keep me sane? I started blogging to keep me from going a little squarely. So I make inappropriate jokes on the internet for a hobby. And I read and garden once I discovered that the enclosed trampoline is like the best playpen. All I was doing was focusing on this child with these needs. I was never Tanis. And certainly not my husbands wife. So writing a really inappropriate post about boob hairs is really important to me.

Julia: All of our hobbies seem to be pretty much inside. And so that's obviously a theme but maybe I'll get to go outside someday. I need a big trampoline.

Audience: I'm Jenny. I run a food allergy blog and have a son with kidney issues. He spent 5 months with cathedral bags and tubing. When he slept... I was afraid he would yank them out. One thing I wished I had found earlier... audiobooks.

Julia: My kidney stuff and baby stuff... both of my kids had therapy. we didn't have smart phones but it's interesting how we we can get everything on iPods and audio books are a great tip.

Audience: Hi I'm Lisa. we all know it's important to take time but we often feel guilty. How do you deal with guilt?

Tanis: When Sheal was born... I didn't go home because I had an infant in the ICU... but I would go home at night. I'd see my other 2 briefly... tuck them in and then I'd go back. The doctors would ask... why are you here? And I'd say where else would I be? And he said... you have to take time for yourself or you'll get burned out. I mean he really was an asshole but I never forgot that conversation and I talked to my husband and he agreed and I took a day off and it killed me but I realized... Oh. this is what he's talking about. The worrying is going away... but still take care of yourself or you're asking for problems.

Julia: I don't have guilt. I take a week at the beach with my girlfriends and I go to conference to connect with other parents and the reason I don't feel guilty is that I want my children to know that other people can take care of them and I need them to see I'm more than just a mom. That's why I don't feel guilty. It's important for my husband also to have a partner that has other facets. I do feel for you tho. I want to hug you. Don't feel guilty for connecting here.

Susan: I do feel guilty still. He's 22 now and it makes sense that he lives with other guys in a house. A group home. It's not depressing. He has roommates and a caregiver. Taking him back to school was harder than it is n ow. My husband used to come with me to take Nat back and it was a pain for us both to go and it took time but he came with me because he knew it was hard for me. I would collapse a little and want to cry. My husband would save up podcasts to take my mind off of it. It was our time together... even just in the car.

Julia: Next... seek help. I've always been that way because of one thing my sister said to me when i was overwhelmed with a 6 day old diagnosed with a disease and my sister said... you don't have to be supermom. You just have to be an ok mom. I had a friend who grocery shopped for me for one year. Mother did my laundry and swapped with my friend. So I am a big proponent. One thing I learned throughout our process... was the people who helped us got a lot out of it. They always said I was giving them a gift. Accept it freely when it's offered.

Susan: Even seeking out therapy. that's really important too. It doesn't have to be an expensive session. I don't really advise sharing with a friend in a therapeutic way but a neutral person that can help you. And not just you... your kids. Eventually we found he had post traumatic stress syndrome because of his older brother. But therapy was one of the best things we could have done and it took years but you could really see him start to come out of his shell. You've got to look at your family and see who needs help.

Tanis: I've got nothing. I still struggle recognizing when I need help. Even asking the kids to help fold the laundry. I am going to keep trying to get better at it... but that's my issue. I want to be able to do it all.

Julia: Had a friend that even helped go on blood pressure checks with me and wrangle my child and those moments are what got us thru the "fog".

Audience: I don't have a problem asking for help but i have to learn to delegate.

Tanis: I don't have a choice. I can't do everything and it kills my ego a little bit... so I rebel getting other help. It's an ego thing.

Julia: I pick things I don't mind letting go of. which brings us into our next topic... acceptance. I lower my standards when I can. I know that sounds terrible but...

Audience: We've had our help disappear. It's just us.

Julia: It's taken 10 years to create a group of people. They'd take my call at 2 in the morning out of love for me but it's taken that long to find a group of 4 or 5 women who are my extended family. My parents couldn't be around my son for a while and I lost a lot of friends during that time. This brings us to acceptance. Which is therapeutic. Accepting where we are in life. Accepting a dirty house. Accepting can be emotional or physical tangible things and lowered my standards.

Susan: Especially with autism... there are so many therapies but there's little guidance. What's progress supposed to look like? Because all are individuals... you can't compare. I'd go around with this feeling of frustration and I got to a point where i said... this is what it is. He is going ot be autistic and some accused me of giving up on him. i saw it as letting go... a vision of him where he is perfect. Our lives took a turn for the better when we stopped chasing therapies. That helped a bit.

Tanis: I think that ... Shale died unexpectedly. I struggled with accepting that. And then we got Knox. I think I've already been through the parents worst nightmare... so.. life kicked the crap out of. All of this life now is a bonus. I just care that I can giggle with him for one more moment.

Audience: I read Making Peace With Autism... Susan... and it came at just the right time. My son is a wonderful boy and I can't say that I have made peace... but I am getting there and I wanted to thank you.

Julia: All of this that we've talked about didn't happen over night. It's a long process. As long as we keep choosing the path that works for us and not letting the haters get in our head.

Tanis: The thing that helps me most prevent burnout... it's those tiny little joys that your family provides... that moment of joy... remember that when you're in such severe pain. It scatters all that grief. And I've had it tattooed on me "One joy scatters 100 griefs."

Audience: For me... acceptance is a journey. I've been at workshops and their child is 20 and they start crying. We have this vision of your child. Is there a way to let go of this vision? There's still this little hope...

Susan: I don't think you should let go of that. Hope is the other side of denial. Keep that going. You don't know. Keep hoping. why not?

Julia: I have new hopes for my kids. Hopes I didn't even know were possible. Helping them to find them and reach their potential. and that's the end of our session.


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