Life After Autism: Finding Peace and Creating Happiness

The other day, my daughter, Madison, shook me to my core.  I was tucking her into bed and she was telling me how nice I am now.  “Now?” I asked.  “Yes,” she said. “About two months ago you started being nice.”  My heart sank.  I responded that I was sorry and that I had not been feeling very good on the inside for a very long time, but that I have always loved her.  Then, I cried my eyes out (don’t worry, not in front of her) as I let what she said drift into the deepest part of my being.

I had to be honest with myself and admit that she was right, after all.  It wasn’t easy to swallow.  For the past eight years, I haven’t been very nice sometimes.  I haven’t had time for nice.  I’ve been busy doing the impossible: recovering the precious being who just called me out! I needed her better yesterday. And, let’s just be honest, I have spent the better part of those eight years pissed off.  I trusted the medical community. I mean I am one of them, why would I not trust?  I never questioned anything.  When I took my children or myself to the doctor, I absolutely believed every word they said without a thought.  And, I followed their directions to the letter.  So, when I finally figured out how my child ended up in this mess of immune disregulation, inflammatory bowel disease, gut dysbiosis, a defective methylation cycle, oxidative stress and all of the accompanying issues that go along with such things — and, that list is not conclusive, by the way — I was beyond infuriated.

And I was hurt. So very deeply.  I hurt for this child on a level that defies description, especially because I knew it was my fault.  I have never lost a child, but watching my child suffer with pain and being trapped in a sick body that is not capable of functioning appropriately — losing a child is the only thing I can imagine that would come close to describing the pain in my heart.  And so, as a result, I distanced myself, especially from her.  If I allowed myself to feel fully what I was feeling, I’m not sure what would have happened.  I may have ended up in a mental institution, or worse.  But I had a job to do.  I had to get her better.  I was not going to stand by and let her continue to suffer and let my heart continue to break.  But, I could not harness the strength I needed to do the things recovering a child requires and be a blubbering mess of emotions all the time.

Over the years I’ve gotten really good at hardening myself.  I’m probably at an expert level by now.  I may seem cool as a cucumber, laid back, easygoing for the most part, but the truth is I was, and in some ways I still am, hiding my pain. It was just easier not to talk about it or acknowledge it, you know?  And that hardening has spilled over into almost all aspects of my life.  For example, I began to have a difficult time believing what anyone says.  I no longer fully trust anyone, especially medical professionals, medical organizations and the government.  I also still have a hard time receiving or communicating love, but I am getting better with that.  I feel most of the the time that what I am seeing and most people are superficial.  It is difficult to admit that about myself.  But I find it healing, and isn’t that what this journey is all about?

So what happened two months ago that caused my daughter to notice that I had become nice?  Actually, it wasn’t something that occurred only two months ago.  It’s a process that’s been going on my entire life to a certain degree.  However, several months ago, I began to experience an intense spiritual shift.  Before, and especially before autism entered my realm, I was a very shallow-minded person.  I didn’t realize it, but now it is easy to see.  I judged people as ignorant if they did not believe as I believed, whether it was religion, healthcare, politics or football.  It didn’t matter.  My truth must be your truth or you are ridiculous.  I had no problem bitching either.  I could bitch sun-up to sun-down about the most irrelevant things.  Then autism hit.  And guess what? All of sudden I realized just how irrelevant those things were, and boy was I jealous of folks who still had the luxury of being concerned with such shallow things. Even though I realized finally what was important, I wasn’t happy.  In fact, once my eyes were opened I was even more miserable, because then I knew what was really happening and at the expense of our children.  Of course, when my daughter was at her sickest, I did not have a lot of time to dwell on my feelings or my dysfunctional coping.  There was one mission: recovery.

Thankfully, as she has progressed, so have I progressed.  I have come to a point where I realize it’s perfectly okay for me to be happy.  I deserve happiness. Is everything perfect?  Heavens no!  But since I have chosen to be happy, things have gotten a lot better, and apparently I have become a nicer person, too.  When you are in the fight to recover your child, when you realize the circumstances that brought them to where they are health-wise, it can and will make you see red.  But I think it’s important for your well-being and the well-being of your child to try to resolve that anger as much as possible.  That doesn’t mean you can’t or shouldn’t work for change, but that you don’t lose your inner peace doing it.

Some of the things I do to raise my energy and maintain my peace are: meditation; keeping a journal; eating healthy (yes, what I eat affects how I feel, and when I eat crap I feel like crap); exercising, especially running.  Even though I dread it every time! After I run, which is really like the slowest jog in the history of the world, I feel accomplished.  I can really tell a difference in how I feel if I miss too much. Choosing happiness. If I find a negative thought trying to creep in I try to focus on something I enjoy instead, or if I find myself in a moment where I am facing some unwanted behavior from my daughter, I remind myself it is temporary.  This is the area I have to work at the most, because I automatically start going through a laundry list of what might be causing the behavior, to the point of obsession. Healing is a process; it typically doesn’t happen overnight, and maybe she is just having a bad day like everyone has sometimes.  There is nothing wrong with trying to figure out where the problem is so you can correct it, but not to the point of sacrificing your inner peace.  I find I am much more effective at helping my daughter heal when I’m not a wreck. I also have to monitor how much attention I give to the haters.  You know what I mean.  I am getting much better at the art of the disregard!  Plus, I’m probably not going to change anyone’s mind in a Facebook war.  There are other little things I do as well, but you get the point.  Life is to be enjoyed.  That’s your purpose.  And, even if you have a sick child you can still give yourself permission to find and do things you enjoy. It’s okay for you to be happy!

Autism has felt like a curse most of the time.  It’s funny, though, you can sometimes find a blessing in a curse.  I wish I could have found peace some other way; to have grown as a person without my daughter being injured and suffering.  Maybe I would have regardless, I’ll never know.  But I do know that walking through this fire with her has changed me, made me who I am today.  And I like who I am. I can’t imagine still being that shallow-minded person.  Judgmental, superficial, trying to keep up with others, and maybe even a little mean.  That is not who I really am, and it was never who I was intended to be.

xoxo

~ Chief

Southern born-and-bred, Registered Nurse, mom to Madison, who is recovered from autism. I have settled nicely into my crunchy-mom role, after years of working to heal my daughter. If you need me, check the grocery store or my kitchen, where I whip up gourmet SCD cuisine. Just kidding, it’s chicken and carrots.