Autism Awareness Month. Is there something you’d like to get off your chest about this?

Innocently, my sister-in-law asks.

Well maybe . . .

AAM is great for those who need awareness of this draining, frustrating, expensive, thief of a disorder. It’s important to let others know as much about it as possible—and it does help our children become better understood, which is beyond important.

But for the parents, I have a better idea.

I think April should be the month you get the hell away from autism.

Your family and friends should swoop in and save you for 30 days. If we could start this practice, I know we’d find much less of a need for awareness months in the years ahead. I bet we’d get a lot of donations and might even stumble upon a cure. Everyone would be aware, all right, maybe more aware then they ever wanted to be. Just like every parent of a child with autism.

Instead, Autism Awareness Month turns into a time for those affected to work even harder, because we’re fundraising and desperately looking for something to wear that is blue (the official AAM color). We, the “choir,” so to speak, become inundated with movies and tributes that make us cry so hard we can’t breathe or peel off our scabs. I have to admit, I’m exhausted and it’s only April 13th.

Please know there is nothing on this planet I love more then Joey. He is my light. Think about that—my light.  Honest, without him I would be in the dark about so much.  I wouldn’t know real patience, kindness, love, pain, happiness, sacrifice, or fear, to mention a few things he has enlightened me on.

But a break would be nice. And a break I don’t have to pay for would be as close to a miracle as I can imagine right now. I know other parents would agree. Maybe we can all go somewhere together? Like some small island off Hawaii?

I have to admit, for myself, I mainly just want to sleep.

Yes, the new locks on the kitchen doors help me sleep a little bit more soundly. Now Joey doesn’t get to cook in the middle of the night. We decided to get them installed last week, when at 3 a.m. Joey made cookies on a metal cookie sheet, in my new microwave. It’s melted inside now, but oh, it could have been worse. Thank God my husband woke up! And the house alarm helps too. Now, when he walks out of the house at 2 a.m., we’re woken by an electronic voice saying, “sunroom door open..” That alarm is a godsend, because now we know to go get him back in the house. Otherwise, he would roam the neighborhood.

Yes, sleep would be nice—worryless sleep.  It’s a blessing that others who are not aware take for granted.

But as I think about it, I know I couldn’t take a whole 30 days away from that face—that amazing face with eyes as deep as the ocean. They tell me so much—mostly that he loves his tired, very old-looking mama, and that he wishes he didn’t have autism.

Maybe that’s the one thing we parents need to be aware of: the kids wish they didn’t have it.  Sometimes, after the third night in a row of no sleep, or the fifth bottle of shampoo he’s spilled out so he can roll in it, or the eighth time he makes a mess when he uses the bathroom, I  get angry and forget: Joey wishes he could be like everyone else.

As much as it sounds wonderful—30 long, free-from-autism days—I couldn’t handle that. I would worry anyway.

Okay, another idea. Maybe every April, we get a three-day break. That might be nice . . . so maybe we can start with that?

Autism Awareness April: A Three-Day Break!

I’ll pray it catches on. I think a three-day nap I can handle. And not worry—well not worry  too much.

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  • Tara Klein April 18, 2010 at 8:46 am

    Thank you for sharing your story, Phyllis.
    Maybe if more friends, neighbors, and family members could each offer parents who have children on the spectrum a break for just a few hours a week, we wouldn’t need to have an autism awareness month anymore.
    Building a community of support for all families that have children with disabilities is what truly creates awareness…and compassion and hope.

    Reply
  • Julia Kay April 16, 2010 at 4:24 am

    Thanks for a great piece!

    Reply
  • Cindy April 15, 2010 at 11:47 am

    OMG Phyllis thanks for sharing. Once again you touched my heart and made me cry! While Dom does not have Autism, his developmental disability does impair his ability to live a life like the rest of the world. There are so many things we do on a daily basis that most of the world takes for granted. We too don’t have the opportunity to live a life like a family with children who are not disabled. There is not a moment in our lives that goes by without thinking if Dom is OK, are the people I trust to care for him watching everything he does to protect him, are they offering him the oppportunity to participate in his day like everyone else? Oh,…as you know the list goes on. I must say that I absolutely love your idea! I remember when Dom was very little and everyone would actually call us and asked if they could help. But now that he is bigger and his behaviors and such are bigger we “never” get those calls anymore. IF…I have to ask, it becomes such a “to do” that it takes me days to make a call to ask for HELP. Usually only to hear, “oh well sorry I have tickets to a show in Manhattan” or “maybe in June when I’m not so busy” or “well my friend just called and wanted to go out ofr dinner that night”. That’s when life throws the big “sucks to be us” right back at us. So to you I say HORRAY!!!!!!!!! I love your idea and hope that MANY families (including us) get that call. Ps. If I do,….Dan and I would love to have dinner w/ you and your husband,…..just like everyone else!

    Reply
  • Abbe Case Ellam April 15, 2010 at 11:22 am

    Great article! I’m forever exhausted as well. My son doesn’t cook or wander in the middle of the night, but he does like to run out of the house during the day. My husband just moved the storm door lock up to the top of the door, because he was able to reach it and get out, and we were forever chasing him outside…And he still gets into our bed every night, in the middle of the night…A few day break would be nice…But I couldn’t do without my son for 1 month either. I completely relate to your thoughts and experience!

    Reply
  • Marcia Roth April 15, 2010 at 10:21 am

    Women are the primary caregivers and are the large majority of those providing care. The Family and Medical Leave Act protects us in our out of home workplace but not in our home workplace. There are limits on the number of hours medical professionals can work but nothing for caregivers. Every day we work on reinforcing the out of home therapies provided by medical professionals and other therapists but our work gets blown off as just what Mothers do.
    Inclusion in the community means that services and resources should come into the family home not just out of family sites. We don’t have adequate resources and staffing because we are women and our children have disabilities. Government funding streams are being cut back to not for profit agencies with the expectation that families and especially women caretakers will do more to fill the gap. As this article shows we have little more to give without dropping other things like jobs and sleep. The unspoken alternative is just to pack our child in a car and drop him/her off at the nearest state institution or head for the nearest homeless shelter.
    This article brought back memories of disconnecting our stove and cooking on the backyard grill and microwave for years. My husband learned that heating a happy meal in the microwave with a metal toy is a good way to cause a fire. He also stayed up nights replacing the glass windows my son broke because he liked the sound and still does. That was more than 20 years ago and little has changed in the way of in home family supports.
    Yes a whole month of autism awareness is 12 months in our homes. Soon our children will grow up and the community will have 12 months of autism awareness as well. However, there are still no affordable housing options for the disabled unemployed and those on SSI. 79% of our adult children will continue to live at home. This is our present and future. Soon it will be the present and future of society as a whole.

    Reply
  • Ginger Andrews April 14, 2010 at 10:11 am

    THANK you for writing about AAM. It’s early morning here in Oregon and I’m waking up to VVFC and coffee, thinking how tired I am (menopause–I don’t sleep too well most nights)and trying to remember if one of my house cleaning jobs has been cancelled for today. Wow, that would be nice! I have a big, busy family. There’s always LOTS going on, and while I’m super busy helping make ends meet and doing all I can for many, I confess that I manage to find time for doing the things I enjoy: Writing poetry, long walks, reading, making the occasional quilt, camping at least once a year, etc… But I’ve never once offered to give a break to my nephew and his wife whose lives are completely dedicated to their autistic son, or to my young niece, a single mother with an autistic daughter, who always, now that I’m thinking honestly, looks absolutely exhausted.

    Reply
  • susan varsames April 13, 2010 at 9:38 pm

    phyllis,
    that article rocks.
    i know what you mean about exhaustion in mid april.
    we all feel so obligated to spread the word, speak at conferences, teach courses,get our articles published, make a difference. how about we take just 1000 kids and let them loose in the white house for three days, then move them to the senate, then to the house….
    then take them home and snuggle them and get on with life as we know it….
    kisses,
    susan

    Reply
    • Victoria Stockdale April 13, 2017 at 10:33 am

      Thanks Phyllis for stating the truth and facts of our daily lives.

      Reply