Mom out of ORDER

outof order

By guest blogger: Melody Benbow

It’s every mother’s worst nightmare, but it’s an absolute fear of an autism mom- Mom being out of order. It happened to me two years ago. I fell down a few stairs while carrying a load of laundry. I was in a rush to get that load going before I left for the day, to a TACA coffee talk no less and it was the fall that turned my life upside down for the next 4 months. A simple fall left me with 8 screws in my ankle and a broken fibula. It totally sucked. It was an out of body experience as I lay in the ER while the Orthopedic Surgeon told me that I would have to be bed ridden with minimal movement for the next 3 months and all I could say was, “But doc, my kid has autism, I don’t have time for this”. In the blink of an eye my worst nightmare had come true:  Mom was out of order.

We had no choice but to bring in full time help, as we don’t have family close. The wonderful girl who came to help us was incredibly sweet and kind, knew some about autism, but no clue about the bio-medical world of autism! Boy did she learn quickly! GFCFSF and then some at this house! Trying to teach her the ins and outs of diets, supplements, making sure this one gets to therapy at this time and this one to preschool these days, social skills groups on these days, ABA and OT at meal times, all the fun ‘quirks’, and forget about the house stuff! I think she looked at me like I had 5 heads when I told her we don’t own a microwave. It was incredibly hard to learn to let go.

I admit that I did struggle with depression. The world was passing me by. I needed to be on my feet to continue to do everything I could to help my kid get better. I had started to think it was karma biting me in the rear for ever thinking “It would be nice to have a day on the couch”. I felt so guilty about all the money being spent on nannies, cleaning lady, and random things just to make life easier. This money should be spent on healing Cal!  As I started to heal, I slowly emerged back into the world. It was a lot of hard work and physical therapy to recover; I had to learn to walk all over again!  It was incredibly difficult, and I am incredibly blessed with the many friends who pulled me out of my funk and would call or come to the house just make me laugh. Many I met through TACA. Once again, TACA became a lifeline for me.

melody

This week I learned that unfortunately, my injury has not healed the way we thought it would. I need to go back for another procedure, which means another 2-3 months off my feet. I was devastated. I sat on my couch for about an hour completely paralyzed with fear, reliving all those long months all over again in my mind.  BUT, and the big but, is that I try to see things from a positive perspective. “Flip it to the positive” I like to say. And this time I REALLY had to search for the positive. So the positive is that this time, I can prepare my family, my kids and myself.  I have all the amazing tools that TACA provides to help set my family up for success before the surgery happens such as the Daily Calendar Log, Meal Plans, Recipe Database, TACA Library and the Mentor Program, because even us coordinator moms need a positive and uplifting friend sometimes!  It will not be easy, but it is what it is and what you make of it is your destiny. I choose to be positive. I have to take care of me to take care of my family.

It’s a lesson learned:  That we moms need to slow down. Take a deep breath.  Set your family up for success should something happen to you. There is no need to rush. And to always take a few extra minutes to do the laundry 😉

melody and cal

Special note:

Melody is a super mom to Cal and very rarely is she slowed down by anything! Melody volunteers in TACA’s New Jersey effort as a TACA coordinator.

 

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10 Comments Add yours

  1. Jacey Smith Capurso says:

    you just rock my friend! i love your honesty, tenacity and willingness to share! i hope you are up running around again…. Watch Out World. When Melody is going – its 100 miles an hour, all with a big smile on her face!

  2. Joanna says:

    This is why I don’t do laundry. Just kidding. Wishing you a better recovey this time Mel!

  3. Brandi says:

    Thanks Lisa. Almost 2 yrs before bootcamp in 2009, I had to learn to walk again as well, I am a better mom and mentor b/c I couldnt make myself slow down. I was actually doing my familt a disservice. Five years later and a minor adjustment ti my back in November was a great experience. You have not idea how many you inspire…who inspire….who inspire. Blessings.

  4. Jennifer says:

    Wish you a speedy recovery! Btw is that Dr Dornfeld?? Love him. He helped my Xander so much! He’s our biomed dr too!!!

  5. Andrea says:

    melody, you are such an inspiration to me everyday. ❤ you!

  6. Evelyn D. says:

    Melody is one of those people who is able to accomplish so much and is so helpful to everyone in NJ about everything autism. She connects people to resources, information or whatever they need. Its truly a gift.. I’m so glad your in NJ Melody what would we do without you and TACA???

  7. jenn says:

    i’m so lucky to count you among my best friends!!!!!! you’re a great mom and amazing woman!

    1. Hi Susan,

      We would love to help every family. We would love to see tragic stories like this disappear.

      We need families to reach out to us if they need help. I wish TACA had the funding to be “assigned” to every newly diagnosed family with a mentor and support. But right now this is available by opting in.

      Lisa

  8. I don’t even know how I ended up here, but I thought this post was great. I do not know who you are but definitely you’re going to a famous blogger if you are not already 😉 Cheers!

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