Wednesday, May 9, 2012

The Care of Alphabet Soup Parents

Don't give up on us, okay?
Image by tungphoto

One of the most difficult aspects of being the parent of an alphabet soup child is handling the inevitable isolation and the loss of those moments that define you as being something other than an alphabet soup parent.  Friends may recede as we no longer have the finances to support an active social life, let alone the time.  We may have to give up our jobs if we cannot find a way to work them around our schedule that has become filled with appointments and unscheduled interruptions.  It begins to feel like our lives are fully consumed by our kids and their needs.

Often, these changes can cause misunderstandings and hurt feelings among your friends and family.  Why do you no longer want to spend time together?  What's with all the sudden cancellations and dropped plans?  How come you aren't seen at family gatherings?

It can be difficult to explain, but I will try.

1.  Finding a babysitter has become nearly impossible.  We are trying to be polite and not impose.  We know that not every gathering is "family friendly," and we are attempting to respect that.
2.  Because one parent is no longer working, and thanks to mounting medical costs, our financial situation may no longer allow for "frivolous" activities.  We can't justify a dinner out when the power bill is due.
3.  Even family friendly events may pose a challenge.  Our children are often unpredictable.  We don't know when an outburst is coming, or whether it's going to be a shutdown or a meltdown.  Or we know perfectly well that an outing is likely to be overstimulating for our child and a meltdown is likely.  Rather than expose everyone to that situation, we simply stay at home.  
4.  We may simply be exhausted.  We are tired and stressed out and know that we are unlikely to be pleasant to be around.

You may feel angry about the situation or even slighted.  You might even think of your friend as rude or uncaring.  Please remember:  We have a lot on our plates.  We are trying to do the best thing for our family and for our child.

Here's how you can help:

  • Read up on the situation your friend is coping with.  Understanding what they're going through is the first step toward accepting.  One excellent selection is How Can I Help?  A Friend's and Relative's Guide to Supporting the Family with Autism by Ann Palmer.  
  • Check in with them once in a while.  Silence makes coping more difficult.  Your friend may feel abandoned and will be less likely to come out at all.
  • Talk openly about the situation. It's not a taboo topic, and your friend will feel better knowing there is someone who will listen without judgment.  
  • If you know the child and feel competent doing so, offer to help with respite care.  Don't be vague -- offer a specific time and date.  
  • Continue to extend invitations.  Even if your friend can't make it, the invitation is appreciated.  Be understanding of last minute cancellations.  Unpredictability is simply a part of life for alphabet soup parents.
Alphabet soup parents, what would you add to this list?  Friends and family of alphabet soup parents, what are your questions?  


  1. I hadn't thought about this sort of thing much, I admit. Thank you for posting. I'll pay more attention to my friends' various situations and do my best to continue to work to let them know I still value them, and invite if/when I actually have gatherings!

    1. That's great to hear :) I know it isn't something most people think about, and I'm not pointing fingers or laying blame. Sometimes just a note to say "I love you guys and I'm still here" is all it takes to make us happy!

      Thank you so much for reading!