Parenting

15 Surprising Quotes From My Child With Special Needs

“At least he can talk.  You’re lucky!”

I often get this line from other parents of children with special needs.  But talking is not the same as communicating.

Yes, my son Louie is verbal, but he doesn’t use language the way most people do.  He often repeats phrases dozens of times in a  row, because the phrase is associated with a specific mood, not because he wants to communicate the information in the phrase.  This is a type of echolalia.

A different meaning to questions and answers

He often doesn’t respond to questions.  When he does answer, sometimes his response is unrelated to the question.

He asks questions, not to seek new information, but to get a response that he enjoys hearing - it’s a stim.  For example, every time we go shopping or to the library, he asks employees where the lost and found is located.  He didn’t lose anything, he just likes to hear the response.

He doesn't tell me if somethings wrong

Sometimes he doesn’t know how to tell me what’s wrong.  Two months ago, he was bitten by a neighbor’s dog, a fact which I did not discover until hours later when I noticed blood on his sock and leg.  Last week he bumped into something at a store and scratched his eyelid, but I didn’t see the injury until after we left the store.  He didn’t react or say anything when he was hurt.  He doesn’t tell me when he’s sick - I watch his behavior and check him for physical symptoms, taking his temperature every time I see him do something out of character.

The Surprising Things My Child with Special Needs Says

But sometimes he looks into my eyes and says something original and spontaneous, straight from his heart.  Everyone who knows Louie has a story about something he said - something surprising, profound, silly or revealing how much he really understands.

Here I’ve collected some of the most surprising things that he’s said with a brief explanation of why it was significant for him.  The moral of this story is twofold:

• Just because a person can talk, the words may not mean what you think they mean.
• Always assume that a person understands everything you say and do, no matter what that person’s ability or disability may be.

1. “The pigs are made of titanium!” Louie requested that I include this line, even though I don’t fully understand what it means to him.  I know he’s referring to the pigs from the Angry Birds game and his favorite element on the periodic table, but I don’t know how he created this confluence of motifs or why it makes him laugh hysterically dozens of times every day.  It drives his brother crazy when he says it, which only makes Louie laugh more.

2. “The power went out!” My son says this as soon as wind or heavy rain begins to pound against the house, because it reminds him of the time we lost power for one day in June 2009.  He says it even while knowing that the electricity is still functioning perfectly.

3. “When are we leaving?” Immediately after arriving at any social event, he repeats this loudly with increasing frequency proportional to his anxiety.  It is always surprising to our host.

4. “We used to come here when I was a baby!” Louie’s visual memory stretches back a long way.  He loves to re-visit places from his early childhood.  Sometimes a memory will return suddenly and he’ll exclaim like this.

5. “Why don’t you like it when I talk about the time you had diarrhea?” Loudly in the grocery checkout line.

6. “Are you upset?  Are you happy?” Louie has recently started asking me this when he’s not sure how to interpret my facial expression.  This is surprising because I never saw him try to interpret faces before, and it means that he has become aware that others have emotions and reactions separate from his own.

7. “Look, Mommy, it’s DNA!  Look, Mommy, it’s geese!  Look, Mommy, it’s a fountain!" Most toddlers go through an important developmental phase of saying “Look, look!”  Louie somehow skipped this phase and went straight to the titanium pig metaphors.  Now at age 12, he is trying to engage others and share his discoveries.  It’s a huge step.

8. “The rule is: Denny presses the up button and I press the down button.  What’s the rule, Mommy?” Louie loves rules.  He loves hearing them and he loves reciting them.  He also loves elevators, but has learned to take turns pressing the elevator buttons.

9. “The elevator at the Sears Tower goes up to the 103rd floor.” A typical response to casual questions such as “Hi, how are you?” - it means that he is thinking about something that makes him happy.

10. “That’s a bad smell.” A quote from “Curious George Goes Camping” that is breathlessly repeated rapid-fire amid intense laughter, especially when nothing smells bad.

11. “Mommy, I’m sorry your back hurts because you’re getting old.”

12. “I’m praying for you so that you will stop being irritated, Mommy.”

13. “When I touch your face, I feel love.” He said this when I asked him to stop poking my face.

14. “Every day is ‘Do What You Want Day.’” He’s a big fan of the Swingset Mamas, who have a song by this name.

15. “I love you when you’re upset, when you’re sad, when you’re happy.” Louie pulled this one out last week.  I’ve always told him various versions of this so that he understands my love is not conditional.  He kept the words in his heart all these years until he was ready to use them.

As soon as he said it, I remembered a speech therapist telling me 10 years ago that Louie had little to no comprehension of spoken language.

She was wrong.  So very, very wrong.