Wednesday, June 19, 2013

SPECIAL NEEDS ETIQUETTE 101: 7 Reasons Why It's Necessary

Since God chose you to be the holy people he loves, you must clothe yourselves with tenderhearted mercy, kindness, humility, gentleness, and patience.
~ Colossians 3:12, NLT ~ 

I've said it before many times, but I will say it again.  If I had a dollar for every foolish, hurtful, ignorant or inconsiderate thing someone has said to me since becoming the parent of a child with special needs, I would be a very wealthy woman.  Something in flawed humanity seems to make people feel compelled to share unsolicited advice or comments when they are least warranted.  I'm quite certain I was no better than others before I began down this different path of parenthood.

Now it seems to be these personal experiences that God has chosen to use as an avenue to bless others.  By His help alone, I have endured 13 years of roller coaster rides parenting a boy with severe hemophilia and anxiety disorder, followed by a daughter with severe ADHD, SPD, social deficits, asthma, and severe allergies.  This school year certainly hasn't been one of our best.  Our youngest daughter's transition into intermediate school has not been particularly smooth.  And our son has had his own set of bumps in the road.  But this past month has proven to be the great crescendo.  In late May our youngest daughter had a tonsil and adenoid surgery along with having both sides of her nose cauterized.  Complications arose when she had bleeding complications, followed by nausea and pain challenges that landed her inpatient at our local Children's Hospital for 4 days. Just as we began to see her begin to improve, our son wound up in the hospital for 2 days with internal bleeding.

The journey from September through early June certainly brings to the fore all of these clumsy and less-than-kind words and encounters involving those who don't typically operate in the special needs world.  When I found myself educating medical students in the hospital, I couldn't help but think, "Again?  Really?".  Yet, it's exactly such things that the Holy Spirit used to prompt me to begin a series like this.

So here are some of the reason why a series like "Special Needs Etiquette 101" is necessary:
  1. As stated before, people tend to say inappropriate things at a time when we are least equipped to handle it.
  2. Regardless of what people say, God calls us to offer them mercy, kindness, humility, gentleness, and patience.
  3. People are generally well-intentioned, yet clumsy.  They want to know what the right thing is to do in a particular situation.
  4. We are Christ's ambassadors.  That includes willingly educating those who don't know any better.
  5. Those who are not well-intentioned, but harsh and judgmental, need admonition and correction.
  6. People who do work in the special needs community like to know how they can become even better at helping families like ours.
  7. Families like us, who live with a loved one who has unique abilities, need tools and coping skills for those inevitable times when we are feeling beat down by the words or actions of others.
While there are certainly other reasons why a series like this might be fruitful, we would like our readers to be a part of this revelation.  We welcome you to tell us in the comment section, what  "Etiquette 101" issues you would like us to address in this series.  We will do our best to rise to the occasion.  

Meanwhile, please persevere in praying with us for a spirit of understanding and unity to result from these posts.  The best outcome would be if people could gain better insights, compassion, and cooperation in seeing things from another's point of view.

PRAY:  Lord, make me an instrument of Your peace;
Where there is hatred, let me sow love;
Where there is injury, pardon;
Where there is doubt, faith;
Where there is despair, hope;
Where there is darkness, light;
And where there is sadness, joy. 

O Divine Master,
Grant that I may not so much seek
To be consoled as to console;
To be understood, as to understand;
To be loved, as to love;
For it is in giving that we receive,
It is in pardoning that we are pardoned,
And it is in dying that we are born to Eternal Life.
~ Prayer of St. Francis ~


  1. I enjoyed this post and would appreciate insight into HOW to accomplish #s 3-6. I recognize most people are clumsy and it is not an intent to hurt that leads to the things they say, HOW to respond, especially if you are stung by what was said, is the tricky part.

  2. As a mom of an older child living with special needs I've got my list of reactions pretty down to a science. Some days I'm readily equipped for those not so versed in special needs etiquette and other days I really want to not be so forgiving and remind them we are in the 2013 and they really have no excuses to be so ignorant. It is a daily struggle and a work in progress.

    Issues I'd like to see addressed are:

    what to do when parents of curious children grab their child and pretty much run for their lives away from your special needs child

    what to do/say to the parents that don't address/acknowledge the fact that their child is curious and just let them gawk at your child with special needs without even trying to encourage them to befriend

    how to handle fellow Christians that insist your child would be healed if you REALLY prayed/believed for them to be healed or that insist on acting awkward around you when you have your child with you like they have no idea how to hold conversation with a parent when their child is present

    how to deal with friends that were considered your best friends before you had your child with special needs and stuck around while they were a baby, but once it was obvious they were different when they became a toddler or older they pretty much disappeared and act like you can go back to how it was so long as your child isn't present

    If any of these can be fit in to the blog series that'd be great! Thank you for all you do! I'm really looking forward to following this blog series and sharing with my other social network friends both in and out of the special needs community.

  3. When I've been stunned by an inappropriate comment, I tend to just walk away feeling humiliated and angry. Later, I usually think of the perfect statement that I could have said in response to the comment and it makes me even more frustrated. I despise that in the moment I'm flooded with emotion and the only thing I want to is to escape the conflict. What I really want to do is learn how to stand my ground for my stand ground for a way that honors the creator who made him and the amazing human being that he is becoming despite his challenges. I want a graceful but potent "one liner" that strongly speaks truth but doesn't tolerate ignorance.

  4. This is very timely. One of my friends was hit today with the old "God won't give you more than you can handle" line. My response? Here's what I wrote back:

    I get rather irritated at well-meaning people who twist the Bible to patronize me/us. The Bible does not say that. What it does say is that He will not put us under any TEMPTATION that is greater than what we can handle, but instead will always make a way out. You only have to read Job to know that "yes", sometimes He does allow more stuff than any one person can handle.

  5. Thank you so much for posting this. It made my day I also have a special needs child. People need to be more accepting of special needs. You are a strong person for speaking your mind!! May God bless you and your family!!