The World Through the Special Parent’s Lens: Solid Advice for Well-Meaning Friends and Family

The other day my husband and I were preparing for the upcoming holiday season.  Yes, I know what you are thinking.  The summer isn’t over yet, and we are already talking Holidays?!  Let me explain.  Our combined family is large, and I’m not only talking about our wonderful immediate, blended family.  I’m talking about all of what that implies:  my family of origin, his family of origin, my daughter, his sons, their families, our foster daughter, and their respective families.  In addition to that, we both have the “package” of a previous family.  As you can probably see now, there is a great deal of planning required.

One of the factors that goes into planning for this type of get-together is the fact that my youngest brother, Fernando, who is now 40 years old, is an adult with developmental disabilities.  Why is this a consideration?  My brother is an adult in many ways but cognitively, he behaves and sees the world more like a 2-year-old child would.  He claims spots as his own (for example, the couch in front of the TV), does not want to share (don’t even think about taking his remote control), and can watch TV for hours! (dare not change what he’s watching!).  In addition, he still needs help for certain activities of daily living that most of us take for granted, like going to the bathroom or eating a full meal without spilling anything or staining his shirt. 

This is a huge source of stress for my mother, who in a way, sees herself as the perpetual mother of a toddler who just happens to be really big in size.  This is, of course, a major consideration of when, where and how we plan our events.  Hence, the need to plan for Thanksgiving well in advance, especially when huge family crowds are expected. 

As I thought about Thanksgiving and how to make it comfortable for everyone but especially for my mom, I was reminded of the winding road that brought me to this place of kindness, understanding, and non-judgement.  The road that brought me here was a surprising contrast.  It took me quite some time and some tears of my own to understand, really understand deeply and without judgement, what it means to be the parent of a child with disabilities.  No matter how old that “child” is, he/she will always be a child for those parents.

A group of people are gathered around a table.

This year my mom and brother will be in town for Thanksgiving, as they normally are, and like many years before, we will be flooded with well-intentioned family members and friends, that will want to celebrate Thanksgiving at their home, and I will have to explain, one more time, why this is not a good idea.  I will feel bad saying no, and they will not understand why, even with their kind offer of giving up a couch, a TV, and even a remote control to my brother, I’m still saying no.  The truth is I totally understand their perspective, but I deeply understand my mother’s too.

Here is some advice and wisdom that may help the lay, well-intentioned person, family or friend, understand their special-family loved one:

  1. Special parents feel judged.  If you take away just one piece of advice from this piece, please let it be this one.  Special parents always feel that the world thinks it’s their fault.  Parents typically experience feelings of guilt when things go wrong in their children’s lives, when they see their children suffering.  Somehow, parents think if they could only…(fill in the blank).  And to top it all off, I have heard many well-meaning family members and friends inadvertedly judge those they love by pointing out that things could be better if the parent just did something differently.  So when you feel like your friend or family member is not listening, has put up a wall, or is rejecting your advice, remember that this parent may be receiving the feedback as a judgement.  Be patient and understanding.  Ask the special parent how it feels.  Let them tell you what is like to be in their shoes.
  2. Special parents feel most comfortable in their own environment.  We all in one way or another can’t wait to “get home” at the end of a difficult day.  No matter where home is, it is a symbol of rest, peace, and individuality.  For a special family, the role of this special haven cannot be underestimated.  Their environment may be accessible and may have accommodations that make life easier for the special family.  When they say they prefer to meet at their place, understand that they may not be rejecting your invitation, they are only asking for an accommodation to be able to enjoy themselves a bit more freely.
  3. Special parents feel misunderstood and isolated.  Feeling misunderstood is a consequence of feeling judged.  This is a particularly serious feeling as it may lead to depressive thoughts and the consequence of not only feeling isolated but becoming isolated.  If you have a special parent in your life, pay attention to these feelings. 

In short, my advice for all of you out there, friends of our very special village, is that if you have a family member or friend who is a special parent, please be there to understand, support, and lend a hand.  Should you still say what you think, give advice, and lend your opinion?  Of course!  Your relative/friend really needs you, all of you.  But just be aware of what may be happening behind the scenes, so that you can be more present and more whole to support your friend.

Eight people standing under trees.

If you have any questions, drop me a note!

Dr. Klimek

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