8. I'm Sorry ... What Did You Just Say?

I know there are a lot of blog entries about what not to say to parents with kids of special needs.  But this is my list.  It's a mix of general comments and then a couple very specific ones.  They were all said directly to me and I want to explain why each was impactful.  

When J was four or five years old, we were in Toys R Us to find a birthday gift for a party he was invited to.  Before entering the store, I told him that I was not going to buy him anything.  I knew if we passed by any of the Thomas the Tank Engine or train toys that it would be bad, so I took up a roundabout way through the store as to miss that section.  He ended up seeing it anyway and wandered over.  I immediately tried to redirect him, and he began having a tantrum.  So, I scooped him up, flailing and fighting, and took him outside.  We went to the side of the building and I let him cry it out.  We weren't near the door, I had knelt down, and J was screaming in front of me.  We didn't have our ASD diagnosis so I handled the situation the best I knew how.  I had removed J from the store, taken him outside, so for all intents and purposes, I was trying to be as thoughtful as possible to the other customers.  Yet someone still told me I needed to get control of my kid.  Thank you, sir, I hadn't realized there was something wrong with screaming in front of a Toys R Us.  My eyes, they are now open.
The same thing happened at a restaurant.  J began to have a tantrum, so I took him outside.  He resisted while we walked through the tables, and as we headed towards the door, a woman stopped me and told me to get control of J.  In both situations, I was shocked because I thought it was obvious that I was actively trying to do something about what was happening.  He was not having a screaming fit in the middle of the room while I ignored him.  Just ... are you kidding me? 

This was at the park when J was about two years old.  We were playing on the playground, as most parents do with their kids at the park.  A lady had her son there, who was about the same age as J, and  he was talking up a storm.  J was almost completely non-verbal at two.  I asked his doctor, but J seemed to understand everything that was said to him, even though he did not verbally respond, so he wasn't overly concerned at that point in time.  J did not avoid touch (at least with me), he loved hugs.  At that time, he was not in daycare and he did not yet to go preschool so I didn't really know how he was socially with other children.  He smiled some, but he wasn't an overly boisterous child, so I figured that was his personality.  He did have meltdowns at the slightest change, but again, he was two, so I figured it was part of being a toddler.  So that day we were at the park and this lady asked me why my son was not talking, and then said, "You should take I'm to the doctor, there's something wrong with him."  It wasn't said in a concerned way or even a sympathetic way.  And immediately afterwards when she said that not talking could be a sign of mental retardation?  Yes, I was done with that conversation.  Have a blessed day, ma'am. 

Do I think parents overmedicate their kids?  Do I think parents use the word "hyperactive" when really their kid is just being a kid?  Yes.  Of course I do.  I'm sure we all do.  Would I tell a parent who says their kid has ADHD that I think they need to calm down because their kid is fine?  Hell no.  I'm not an expert on anyone else's child but my own, so it's not my place to say.  I don't know what they're like at home or at school, so I cannot comment on their behavior.  For us, I had a therapist tell me that my son was one of the most severe cases of hyperactivity he had ever seen.  A lot of the manifestations of ADHD are so very closely related to ASD that they blend together.  But my son is unable to sit still to the point that he will knock things over, run into walls, or fall off the sofa.  He jumps in place, runs in a circle, and will shake his entire body until you make him stop.  I never thought I would medicate my children.  Then when J's therapist said he was severely hyperactive, I decided to try it.  Night and day.  No one forced me, no one asked me if I wanted to medicate him.  That was a decision we made for J and then sought advice about it from the therapist.  J is still extremely hyperactive, but he is manageable and because he is calmer, we are calmer, and I have immensely more patience now.  I'm not spending my time telling him to sit down, stop running, stop jumping, stop flailing, so I have more time to spend on focusing on more serious ASD symptoms.  No matter what, you do not know what the child's situation is, so never tell a parent their diagnosis is an excuse for anything. 

This one I can't even.  The phrase "over-diagnosed" was also used in regards to this.  Come live at my house for a while and tell me it's simply poor behavior.  I dare you. 

Because of the foods you let him eat as a baby.  Meat and dairy and GMO's.  Because you vaccinated him against the things that need vaccines.  Because of genetics, do you have autism?
Okay, look, right now, there's no definitive answer of what causes autism, but anytime someone tells me they think they know the reasons why, it always ends up being something that is MY FAULT.  Autism is nobody's fault.  Let's just reiterate that:  AUTISM IS NOBODY'S FAULT.  And if your name is Nobody, I do apologize for being blamed for so much. 

So this is very specific and may not happen to everyone, but it was said in front of my kid by, again, someone who doesn't know us or our situation.  It happened with the pharmacy tech at our local pharmacy.  I was stunned that not only would someone question my son taking a liquid medication vs. pills, but someone who works at the pharmacy itself.  So now you have just made my child very aware that YOU think he should be able to swallow pills.  And again, it wasn't said in a nice way or a concerned way.  It was said with a tone of disbelief.  Like there was something wrong with not taking the pill form of the medication.
What this person didn't know was that it had been a very long process to try and get J to swallow pills. It involved a lot of M&M's.  First, we got the mini kind and had him swallow those with water.  Then once he could do that, we moved on to regular M&M's.  And then peanut butter M&M's.  He does fine with pills that are "regular" sized, but the ones that are bigger than that, he would choke and gag.  Sometimes he could take them just fine, other times the pill and all the water in his mouth would go, well, everywhere.

My nine-year-old has such poor shoe-tying skills that I wouldn't classify what he does as being able to tie his shoes.  We were at Home Depot and his shoe came untied.  We always have him tie his shoes so he can get better at it.  Sometimes he can do it without melting down.  When he starts freaking out, I usually talk him through it, step-by-step, and he calms himself down and finishes it.  So I was talking him through it, I was calm and he was growing calmer, and a man passed by and asked me this.  In front of my child, the one crying over his shoelaces.  This is on par with the previous comment regarding the pills.  You don't know my son, you don't know what we go through so that he can tie his shoes or take his medication.  You don't know how difficult certain mundane tasks are for him, so please do not speak about him crying over shoelaces in front of him.  

I feel that this is somehow putting into question the accuracy of his diagnosis or the validity of his ASD.  He does look normal, especially when you've only seen him for five seconds.  And I don't like to focus on what's normal or not normal, because I do wish my son was a more socially-acceptable normal, and I'm not ashamed to admit that.  But I think I also simply do not understand what that statement even means.  He does not have a physical disability, so no, you would not see any physical manifestations of a disorder.  He does not have an extra eye or seven fingers on one hand.  No limps, no odd gait.  So yes, he looks normal.  That doesn't mean he doesn't have autism. 

Well, I'm calling B.S. on that one, because sometimes it is more than I can handle and I'll break down.  I'll have to ask for back-up, or give myself a time-out in to calm down so I can handle everything.  There was one night in particular, just a month or two ago, where Tiny was screaming for whatever his baby reason was (probably those pesky teeth trying to come in), and J was absolutely screaming and flailing and falling in the floor with his own meltdown, and I felt the walls start to cave in.  I had to get my husband to take one of them.  I can handle one screaming child.  Not two - not simultaneously!  I think this statement is very closely related to the one I hear where God must have had his reason to "choose" me to be the mother of a son with ASD.  That being a Special Needs Mom is a gift and I should cherish it.  If it's a gift, I'm gonna need that receipt.  (Haha, I'm joking.  Sort of.)

This is a lie.  If your child had a special need, you would and you could because when you're a parent that's just what you do.  No questions asked.  You would absolutely do what I do, and I don't believe for a second that you wouldn't.  Maybe not exactly motion-for-motion, but yes, you would do it.  I feel the statement tries to put me on a strange pedestal that I don't belong on.  I'm a parent just like any other.  I get overwhelmed just like any other.  I yell.  I cry.  I make mistakes.  But I love my children and I want to do what's best for them.  You drive your kids to soccer, ballet, and choir.  I drive mine to therapy, autism club, and monthly doctor visits.  Tomato, tomatoe.  Believe me, I'd rather be working out a schedule for extra-curriculars that had nothing to do with therapy, social therapy, and parent support meetings.

Well then.  It's a good thing none of your kids have autism, then.  Also, really sucks that you're telling me this when I am already pregnant.  But maybe if this baby has autism, I'll spontaneously not be pregnant anymore now that you mention it.  Or I'll just be sure to leave out all GMO's from my diet while pregnant and breastfeeding, use everything organic and natural, not vaccinate, and also dance around in circles on a full moon with the blood of a virgin on my hands or whatever ritual will ensure that my child will not have autism.  I know there are some families who have more than one child with autism.  There are also families with no children with autism.  And families, like mine, who have just the one.  However, are you telling me that autism somehow makes a child so much less-than that it's not even worth having another one?  Have you seen pictures of Tiny?  Because he's adorable and I am very glad I had him.  So, seriously, shut up and leave me alone.

People are so rude.  All these statements were made from either complete strangers, or people who don't know me very well at all.  I don't mind answering questions about autism or J from friends and family, where it comes from a place of genuine curiosity and sympathy, or trying to seek more knowledge and understanding.  I do not welcome questions from strangers who demand to know why my son is flapping his hands, or touching every single cereal box in the breakfast aisle and will not stop.  Those times it's best to just look straight ahead and keep on walking.

There are a lot of comments I haven't included on this.  I think we all have a tendency to jump to conclusions when we see other children and parents, and that is a normal human response.  I know I do it.  The difference is, I would not make comments to parents like these.  In today's world, you simply do not know who is struggling and with what, so it's back to that old saying: If you can't say anything nice, don't say anything at all.

Except, seriously, don't say anything at all.