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No Off Button

By Deborah Leigh Norman

Having had a child with an extra chromosome for almost ten years and having lived in three states in that time, I am connected with several listservs, advocacy organizations, newsletters and more. I have found some very useful information for my son from these resources over the years.

Sometimes, however, after reading the title of an email, I hope the information inside will be for me. For example “What to Do During a Meltdown” sounded priceless. However, when I opened the email, the information was for the child’s meltdown, not for mine as I had wished. It included ideas for how parents can help their child during a meltdown, such as giving them a deep pressure hug, offering the child a drink of cold water, or letting the child throw a pillow. These are good suggestions, and different things work for different kids. I appreciated the variety of ideas, but still, I thought, “what about me?” The recommendations continually repeated that the parent staying calm is of utmost importance, but there were no how-to’s for that.

Photo originally posted by Kathy McMahon, 'Two Smile Island'The same thing happened when I got the email entitled, “10 Tips for a Good Night’s Sleep.” Great, I thought, I sure could use some tips, but, again, it was about how to help the child. Sure, some of the ideas like body positioning and weighted comforters could be useful for adults too. The massage option sounded great! But what about when I wake during the night and can’t get back to sleep because I am aching to help my child, but do not know where to begin? How do I sleep when I wonder where more patience will come from inside of me? How do I get my mind to rest when I worry about if I will be able to make it through the next day without crying as I feel a tear glide onto my pillow? All the while I lay there knowing I need sleep, but I can’t find the off button.

Occasionally, if an article or email is about a very specific disability and not my child’s, which is Down syndrome, I do not utilize the information, but I try to at least glance through it to learn about other disorders, chromosomal differences, and challenges. There is often very good information and ideas, and I don’t mean to sound ungrateful for the tips shared to help our children. I just think we spend so much energy on our children that we often do not have any left for ourselves.

My children are older now, so they do not have typical toddler meltdowns, but, unfortunately, I have not outgrown the occasional breakdown. What do I do on those days that the load seems particularly heavy? The days when I feel unsure of which direction to go, alone, misunderstood, or empty from giving so much. It does not happen often, but when it does, I sure could use the top ten specific tips to get me past my meltdown.

As the World Wide Web has changed and evolved, opportunities for parent-to-parent sharing have increased. The deep honesty some bloggers share is truly beautiful. When I read a post of feelings I have matched exactly, I am thankful for those parents’ willingness to share the highs of their victories and the depths of their dark moments. It does give me strength to know that I am not alone in my feelings and worries and that other moms have gotten through some incredibly difficult challenges.

I will always feel the desire to prevent my children’s meltdowns even if those strategies do not help me with my own. Forever, I will think of my children when I wake up during the night. As a mother, I know there is no set of tips to diminish my concern for my children and there is no off button.

 

"Off Button" by Deborah Leigh Norman

 

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About the Author

Photo by Deborah Leigh Norman Deborah Leigh Norman grew up in Delaware and later moved to Virginia, Louisiana, and now Indiana. She is enjoying the journey of living in different regions of our country as well as the journey of her heart becoming a mother and then the mother of a child with a disability. Deborah Leigh has a B.A. and M.P.A. from the University of Delaware. Come share your journey with her at www.departingholland.com.

 

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