Xanadu…No, more like Xanax

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 It’s extremely easy to lose sight of yourself when you are the caregiver to any special needs individual. You begin to define yourself by that, forgetting all the things that made you the person you were before…I used to be Jackie, and hey…to the best of my blurred recollection, I used to like stuff!! I used to enjoy employment, going out with friends, reading smutty novels, traveling, crafting, sleeping, laughing…I have vague memories of such events.

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I am currently the primary caregiver to all 3 of our children during the day; 2 auties and 1 typical. According to my therapist (yes, I felt the need to consult one of those years ago in my quest for sanity…a battle I have since waved the white flag on), each autistic child counts as 10 typical kids on the work equivalence scale. So by that standard, I watch 21 kids all day, every day – which feels much more accurate when measuring my exhaustion. I also feel it’s important to mention my lifelong doubts about my ability to be “maternal”, as I always questioned if I was even cut out for motherhood. Eventually I decided if animals, insects and idiots can do it, I can too! And heck, I don’t even have to master something as difficult as parallel parking, ’cause you don’t need a license to breed! Naturally, I never considered the possibility that my children would be anything less than normal (if not brilliant, like me, right?). Parenting, of course, is a life long commitment, I knew that going into the “breeding zone”. However, my commitment will be obviously different from most parents… I will never experience the glory and the suffering of empty nest syndrome (you know, that magical moment when you get your life back…). Two of my children will require life long care, which is a pretty overwhelming thought, one most parents fortunately don’t ever have to consider. I admit, I often get annoyed when parents take their own beautiful normalcy for granted, and yet blissfully unaware is what I too long to be.

And, no, I am not always the shining ray of sunshine that I present to you here. Like every parent, I have my days…and nights (and my days that turn into nights, that continue on into the next day). Sometimes in my darker moments, my mind runs through the plethora of things that my sons will never experience…Like developing real friendships; getting the “joke”; driving a car; making love to someone they love; or experiencing the wonderment of their own child. Unlike most parents, my thoughts are consumed with things like, who will really care for you when I am gone? Did others hurt or mistreat you while you were away from me (because you can’t TELL me if they did)? If I work diligently with you, day and night, might you someday have a breakthrough?? Does it hurt, autism? And what the hell is that under your fingernails?? I know I am not alone, I truly believe every parent of an autistic child wishes, even just for a minute, that they could be their child, be in his head, his body… to experience with new understanding this puzzle we try to solve each and every moment of each and every day.

 

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9 thoughts on “Xanadu…No, more like Xanax

  1. Pingback: Xanadu…No, more like Xanex by Jackie Penrod Cunningham « Shutup

  2. Just to let you know that there are thousands of people out there that devote themselves to stepping in when parents need a break or just can’t emotionally or physically do it anymore. They do exist, unfortunately the ones that are not devoted and are uncaring are the ones that get all the attention. Saw and worked with them every single day while working as an RN. Wiped bottoms, did double shifts, are poorly paid and still are devoted to caring for and yes loving your children. Not to diminish what you do but there is relief and there are breaks available.

  3. I was blissfully unaware once. And then my 3rd (of 4) child came along, and that, like liking things, is a distant memory. You hit the nail on the head with this one.

  4. I love reading your blog, this one rings true for our family as well. Our little miracles sure take a lot out of us!

  5. I feel ya, sister… I haven’t worked out the math on how many kids I have, yet. 1 with autism, 1 adhd, 1 supposedly neurotypical, and a 2 year old (I’m pretty sure when the 2 year old has been trained by the autistic child she counts as at least 5 average kids.) I can relate to what you are saying about the dark days, the questions about whether I was cut out for this, and the pretty solid truth that my husband I will have our autistic son along with us for retirement. It’s a very different world from the one I imagined for my life and difficult to explain to other people. But I’m kind of learning to roll with it and finding a lot of bright spots that I wouldn’t have in the “perfect life”. I love your writing, by the way! It’s not an easy task to blend humor and the dark realities of caring for a disabled child in a paragraph or, as you so gracefully have done, a sentence.

  6. On one particularly bad day (prediagnosis) I texted my husband to tell him ‘Highlight of the day, it was a dried up chunk of muffin, not poop.’

  7. Please don’t stop sharing!!! More people need to know what its like to REALLY parent a child with autism. I bow to your bravery and strength! But alas….also know…..its ok NOT to be strong sometimes. XOXXO

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