I’m sure I don’t have to tell you, the life of an autism mom/warrior/superhero/booty-kicker isn’t for the faint of heart. It means different things for different people, but for most of us it equals sleepless nights and exhausted days as we struggle to care for our children. Even the things that most typical parents take for granted, such as feeding our children, are a monumental chore. We are searching constantly for the latest treatment, therapy, supplement, etc. that might be beneficial for our kids. We’re fighting school systems and thoughtless relatives. Many of us are struggling to achieve some sense of normalcy for the lives of your non-ASD children. And at the end of the day, there is very little time to take care of ourselves. Not good.

Let me tell you a little about my situation. I am married with a son, age 10, with autism. We have been treating him biomedically for over four years. About five years ago, my son started expressing his physical pain through self-injurious behaviors, usually head-banging. That is when my life shifted into permanent warrior mode. The way I see it, for him, the stakes are high. He needs to recover well enough to not self-injure, or else one day he may face life in an institution when we grow too old or ill to care for him.

In February 2010, I was diagnosed with metastatic breast cancer. It really should have been no surprise. I had been working so hard to recover my son, that I neglected myself. My son ate healthy; I ate crap. I gave him 100% of my thoughts, energy, and attention; I paid no attention to myself. I didn’t exercise, I didn’t take time out for myself, and I had no friends. Spinning. That’s how I see myself then: spinning, spinning, spinning, chasing recovery for my son, and meanwhile I was stumbling through life, dizzy and out of control.

Getting sick was a dramatic wake-up call. As I made my way through treatments I knew that I was largely responsible for what was happening to me, and I resolved from then on that I would no longer neglect myself even while I was working to recover my son. I researched the best foods for breast cancer and changed my diet accordingly. I started exercising. I got my spiritual life back in order as well, putting all my faith in God and trusting Him to take care of me. I opened myself up more to people and started making friends who supported me, prayed for me, and loved me. I made it through treatments and surgery and then set myself back on the course of recovering my son. My resolve was even stronger: God and I would whip autism AND cancer. Not a problem.

Slowly, though, my old bad habits started sneaking back into my life. I stopped exercising. I started allowing a few bad foods back into my diet, then more, and then even more. I started pulling away from my friends and I stopped getting out as much. I began spinning again, spiraling myself into a deep hole of isolation and depression. Fortunately, a couple of weeks ago, I was able to recognize what I have been doing. I took a big first step: I reached out to someone. Actually, I reached out to many someones. I reached out to my fellow Thinking Mom friends and others in a Facebook group that I am so privileged to belong to. I had pulled away from all of them, and I came back to them and told them about my struggles. They reached out to me with open arms and gave me more love and encouragement than I could have ever imagined. They have helped me with suggestions and ideas about how to get my own diet and health back in order. They have shown me exactly why it is important, this friendship, this sisterhood that we have: the sisterhood of autism moms. They know where I am, they know what I am dealing with, and they share many of my struggles.

I am working hard on getting my eating back under control. I am, for the first time, looking at alternative therapies at keeping my breast cancer at bay. Although I am doing incredibly well, and seem to be cancer-free at the moment, I am dealing with some bothersome side effects from the drugs that I am taking to keep the cancer inactive. It is my hope and dream that one day I will be able to come off of those drugs and keep myself healthy through more natural means.

As I am eating healthier, I am finding more energy to do things that are fun. Tonight I am going to a social with my Sunday School friends, and I am really looking forward to it. It’s important to get out sometimes, to get away from autism altogether for a few hours and just enjoy good company and sweet friendships.

I am writing this for you because I want you to learn from my mistakes. It is so easy to get burned out as an autism mom. We tend to neglect ourselves first and foremost. But we can’t; that’s a dangerous mistake. We lose our balance and we start to spin. When we start spinning, our superhero capes get tangled around our own necks. Our kids need us to be healthy and happy. They need us to make wise decisions and live long lives. They need us to fight for them, but we must also remember to fight for ourselves.I challenge you today to look at yourself, and identify the ways you are neglecting your own mind, body, and spirit. Make a list of some things that you can do to take better care of yourself. Then do them. You’ll thank me for it one day.

Love, B.K.

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28 Responses to Burnout

  1. Samantha Shelley says:

    Thanks for sharing your story. Mine is practically identical, cancer, spectrum child and now three generations under one roof! Were helping our spectrum son raise his child!
    I am especially grateful to the advice of AEfountain about creating a date night. I find this such a challenge as I am always trying to be inclusive, but I know that my other child has almost been abandoned , and it is even becoming a struggle now to feel I know my lovely neural normal young adult, especially as I have become a full time grandparent.
    We are so swamped that all we know is that we need to make a change but can seem to manage…… What we think we need is a full time nanny, bit they must be able to take the strain that the spectrum young adult brings to the table….yikes.
    Best to all with these challenges.

  2. Kim Housley says:

    I have done that off and on, too–though it seems sometimes that whenever I go into one of these “holes,” cut off from the world and researching like a mad woman day and night, it’s usually because the Lord is prompting me to find something. So many ways to, “skin a cat,” but I’ve come across a couple of amazing things lately for healing cancer that are “alternative”–have moved away from drugs prayerfully for good. Thanks for your transparency–always helps to know that someone understands. 🙂

  3. Happy says:

    So true! Thanks for the reminder.

  4. Hi Booty Kicker (love your nickname, by the way!),

    Thanks so much for having the courage to write this!

    I can very much relate to your burnout. I went thru much the same myself, but I researched (as we all do), found what could help, and we are all better for it now.

    Have you ever read Suzanne Sommers’ “Knockout” book about alternative treatments for cancer? I HIGHLY recommend it. I know she’s portrayed as a dumb blonde, but she is anything but. I had a cancer scare recently and wanted to know what my options were beyond the standard protocol of cut, poison and burn, and I found this book to be extremely helpful.

  5. aefountain says:

    Sometimes we get so focussed on one individual, we forget the collective unit that can help our disabled child. I certainly am not perfect in this, but I feel very fortunate that in 2000, my health provided me a huge wake up call.
    Things I did to help me along:
    At that time, I had two children (now I have them and 2 step-children). My oldest one and I made a date night. Just him and me and I didn’t have much money at the time. It started with “Survivor”, we had donut night, pizza slice night, buy Pokeman cards night, go for a bike ride/walk, etc. Whatever my non-disabled son wanted to do that Thursday night, is what we did. It kept him special and allowed us to talk about what was on his mind.
    Three times a week, I went for a walk by myself. So ipod or gadget. I refused to listen to my thoughts, but listen to the birds. By focussing on the birds, I could clear my mind of the worries. Twenty minutes is all it took.
    Once every 6 weeks, I treated myself to a massage, pedicure OR manicure. I couldn’t afford all of it, but I could afford one, if I saved some pennies. So I did.
    Like many of us, I sunk into a word of ‘all by myself’. I finally reached out to someone and that someone became someones. That journey was so hard for me because I truly had become a shell of myself, but I did it. I broke through the very barriers I had created.
    I celebrated ‘me’ by buying books like “I like Myself”, “I love my mom” and numerious more, to read to my son. Since I couldn’t find affirmation from other people (because I wouldn’t reach out), I reached out through books, and while reading to my son(s) began believing in myself again.
    Like the old saying goes “you can’t truly love someone, if you don’t love yourself, first”. I believe you cannot truly nurture others, if you are not nurturing yourself, first. If I am not growing, how on earth can I be teaching my children to grow.
    for the honesty.

  6. Pingback: March 5, 2012: Burnout… | The Thinking Moms' Revolution Starts Here

  7. Wendy Bailey says:

    B.K., you really are a superhero! Be strong! And keep spreading the truth and strength to others. We’ll have a network of superheros made up of hopefully healthy moms who can share the strength around as needed. Thank you!
    Wendy Bailey

  8. Jaelyn says:

    I am trying to do the same. Balance it all out. I also need to exercise and eat better for good health.
    Thanks for reminding me!

  9. LuvBug says:

    You gave us a great message we needed to hear at the beginning of this new week – let’s kick some booty this week. Luv u, LB

  10. Erika says:

    Great post and great message to all moms/parents!!!! Keep up the great writing!

  11. Heather says:

    Well said, I think all of us go through burnout, and these are some trying times around our house currently. Thanks for lifting me up.

  12. Johna S says:

    Thanks BK for this oh so important reminder that part of the warrior spirit we have for our kids, needs to have a part of taking care of ourselves. We need to be present with our kids now, alive and vibrant, while we fight. And of course, we all should know this journey is a marathon and not a sprint, long term care for the entire family is vital! I soooo needed to hear this today as I think that noose is around my neck lately, completely strangling myself, so I need to let it go and breathe.
    You TMR mom’s (and dad) are incredibly energizing! Thanks again.

  13. Carolyn says:

    Wonderful BK and best wishes for good health for you and your son. Thank you for sharing this.

  14. Holly says:

    Dear Lisa,
    Today is my first day in 12 years that I have not done therapy or homeschooled. I too gave all of myself to recovering my two kids with autism and in the process gained 70#s. I lost 65 last year but for the past several months felt myself spiraling and spiraling under the constant stress. For now my kids are in school. I’ll see how things work out. Thank you so much for your blog.

    • B.K. says:

      Hi Holly, B.K. here, not Lisa, but I just wanted to say thanks for your response. As a homeschooling mom myself, I know this was not an easy decision for you to put your kids back in school, but we are all faced with some extremely difficult decisions as parents. We have to weigh the pros and cons very carefully and often do things without knowing for certain if it is the “right” thing. Our circumstances may be different but our paths are all very similar–we face many unknowns and we muddle through the best we can. Congratulations on the weight loss! Keep taking steps to make sure that you are staying well. God bless!

  15. Maggie says:

    Oh, Miss BK…you’re an inspiration to us all! Thank you!!

  16. Wendy Hayden says:

    As a mom, you spend all of your energy taking care of your family. No one really takes care of you. I hope that the love and support from this community helps to recharge your batteries and helps you to take care of yourself. Sending love prayers to you and your son.

  17. Allie says:

    Bravo, B.K! I needed to hear this today! Thank you for the reminder. Love and prayers to you and your son – kick some autism AND cancer booty!

  18. Saint says:

    You are an amazing warrior and inspiration. Thank you for this reminder that we need to take care of ourselves if we are going to be any good at taking care of others. I too have had some medical wake-up calls, and despite the initial reaction to pull it together, like you, I easily fall back into bad habits. Thanks for kicking my booty right along with autisms and cancers.

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