What NOT to Say to a Parent with a Special Needs Child {Guest Post}

I am so excited to have my friend, Crady, over at outManned guest post for me today.  She is someone I admire and respect greatly, and a real-life friend. Her husband and my husband grew up together and have stayed close throughout the years. Although, I have only met Crady in person once, due to land distance, I feel like we have so many things in common. One of those is having cute kids! Meet Crady and her family:

I am so honored to be guest blogging at Spit and Sparkles.  Steffany’s blog, kids, and family are so cute!  And I could not imagine having twins!   She rocks!

I have a blog called outMANned: Living Life with my Three Guys.  I have two sons: a three year old named Cooper and a 7 month old (almost 8) named Semmes.  When Cooper was born at 36 weeks, my pediatrician husband noticed immediately that something was wrong beyond the normal preemie concerns.  He has a chromosomal abnormality, and is the only person, as far as we know, with his specific chromosome set. Because he does not have a recognized disorder, the doctors really had, and still have, no idea what to expect from Cooper.  He has a global developmental delay and he is approximately a six month old, developmentally.  My 7 month old is now crawling and babbling, so he is technically more “advanced” than Cooper is. 
He was also diagnosed with infantile spasms at 8 months.  This diagnosis basically guaranteed that Cooper would never be “normal.”  And the likelihood is high that Cooper will develop some type of seizure disorder later in childhood. He is nonverbal.  However, developmentally speaking, he is most advanced in the social/emotional category.  He may not talk, but he is not shy about expressing his emotions, good and bad, in other ways.  He does sit up on his own, but he doesn’t crawl or walk.  He often refuses to hold or touch things and is very sensitive about his hands.  He loves music.  He is extremely ticklish and has the best laugh.  He is not too sure about his new baby brother, but he loves our dog.  He is his own, unique little person.

Well, now that you know a bit about me and Cooper, let’s get to it:  What to say/not to say to a parent of a child with special needs. 

What NOT to Say:

1. “We feel so sorry for you.”  Please don’t.  Believe me, the last thing a parent like me needs is pity.  Help, yes, often.  But pity, no.  I don’t have time for it. Cooper has shown me strength, empathy, compassion, and determination I never knew I had.  He has taught me so much.  He has deepened and strengthened my relationship to God.  He has brought my family closer together.  He has done so much for me.  My life is FULLER with Cooper.  Yes, sometimes it is difficult, but the good outweighs the bad.  Always.

2. “Well at least you have _____ (insert name of typical sibling).”  Like Cooper has made me a better person, Semmes will grow up with more empathy and compassion for other people.  He will be less tolerant of bullying and belittling people who are different.  He will learn, at a very young age, to put other people before him.  He will have to stand up for his brother, since Cooper won’t be able to stand up for himself.  Cooper will make Semmes an awesome man.  Also, just like with having two typical kids, when Semmes was born my heart grew.  He didn’t replace Cooper in any way. 

3. Don’t stare or point.  I know this isn’t something not to say, but there are plenty of things to say (which I’ll get to in a second) so there really isn’t any need to be rude.  You wouldn’t stare or point at someone with a different hair color than you.  By staring and pointing, you are saying that there is something “wrong” with a disability.

4. “Why don’t you spank him more?”  “I read somewhere that a special diet will make him better.”  Don’t give advice.  Ever.  Raising a child with special needs is about as close to raising a typical child as it is to raising a dog.  It’s a whole different ball game.  What works for Semmes would never have worked for Cooper, and vice versa.  Also, I know my child better than anyone.  I’ve got this.  If I want your opinion, I’ll ask.  Believe me.

5. “My cousin’s best friend’s uncle’s daughter has the same thing.”  Don’t compare. Even children with the same disorder can vary greatly (it’s called an autism SPECTRUM for a reason).  And just like typical children grow and develop at different rates (even twins) no two special needs children are alike.  It’s just too much to go into.

What to Say:

1. “How old is your child?”  Ask questions.  Even basic, introductory type questions work to start a conversation.  I would much rather explain something to you than have you stare awkwardly.  Please be polite about it.  But I don’t mind raising awareness.  It lets you stand in my shoes, if only for a minute.  

2. Explain things to your child.  Or let me explain things to your child.  Children are curious.  But once you explain something to them, they seem to accept it and move on much more quickly than adults.  For example, I was feeding Cooper through his g-tube (he eats through a port that goes directly into his stomach) at church one morning.  A fellow parishioner and his two-year-old daughter came in looking for the rest room.  The dad is a doctor, so he knew exactly what I was doing.  But he got so weird about it.  His daughter asked what I was doing as her dad was trying to remove her from the room.  I explained that Cooper was eating breakfast.  I asked her if this was how she ate breakfast.  She said, ‘No.  I eat with a spoon.”  I told her that Cooper just eats differently than she does.  She accepted that no problem.  And that whole exchange made the dad much more comfortable as well.

3.  “You’re an awesome mom.”  Tell us we’re doing a good job.  We don’t hear it enough (heck, what mom does) and it really is nice to hear.  My mom talked to one of her college friends tonight, and she told my mom that she follows me on Facebook and reads my blog.  She told my mom that I was an inspiration to her and that seeing my pictures and hearing my stories made her so happy.  And that makes me happy.  And proud. 

Having a child like Cooper was never in my “life plan.”  But he’s an awesome little guy.  Whenever he meets a milestone I get so overwhelmingly happy.  I’m so proud that he continues to grow and change.  A child with special needs is still someone’s child.  You wouldn’t want people to point, stare, ask rude questions, or talk about your child.  Parents of special needs children deserve the same courtesy.

If you have any questions or comments, please contact me through my blog.  Thank you!