Not Understood, Doesn't Mean He Doesn't Understand

Evan's favorite thing in the world is to be with other people and to talk to other people.

 This can be really difficult for his anti-social, introvert mom.  But he drags literally drags me everywhere to talk to EVERYONE.  So one of the most frustrating things about special needs and disability in our house is communication.  Or rather the lack of intelligible communication.  For the most part we understand what our Evan is trying to communicate to us.  And if others spend any amount of time with him they soon will figure out his words as well.  He has about five subjects that he loves, MarioKart, ApplesToApples, his Cards Bags (Reusable Grocery Bags), a rotating selection of Pixar Movies, and asking what others are going to do today.  His questions are almost always the same and revolve around those things.  Every so often he has some new experiences that introduce new words and we really struggle with figuring out what he is saying.  We pray some desperate prayers to God to help us be better translators.  It is so heart-breaking to look in Evan's eyes when we don't understand.  He says a word so clearly in his mind and we just can't get it.  What can hurt even more is when other people say things like, "I can't understand a things he says", all within ear-shot or even right in front of Evan. We don't say this to those who speak a foreign language.  So why is it acceptable to say about someone with special needs? It hurts enough when he isn't there.  But they don't see the look in his eyes that I do.  

Just because he isn't understood, doesn't mean he doesn't understand.

Another frustrating thing is illness.  Most moms can tell when something isn't right with their kids.  But a special needs mom KNOWS immediately when something is off.  Let the anxiety begin!  We start with the questions.  We are masters of the Yes/No questions.  Is your blood sugar low?  Is your blood sugar high?  Do you feel shaky?  Does your head hurt on the top above your eyes?  Do your ears hurt on the inside?  Do you have a cold in your nose?  Do you have to breath with your mouth open?  Does your throat hurt?  No, not on the outside, on the inside where you swallow your food down?  Do you feel like you are going to puke?  Do you feel like you have to poop?  No, not normal poop.  Poop, like peeing out of your butt (coined by my eldest), running to the potty, poop?  Yes, these are the questions I have to ask.  Start at the top of the body and move down.  I usually get an honest answer.  Sometimes he even thinks he's funny and will make fake puke noises.

Just because he isn't understood, doesn't mean he doesn't understand.

I want so badly to understand my boy completely.  It hurts to not know how to best help him sometimes.  All of the "What Ifs" can be consuming for a special needs parent.  What if someone is hurting him?  I mean secretly, really hurting him.  What if someone is bullying him on a regular basis?  What if, What if, What if.  I do draw a little bit of comfort in knowing he mostly understands me when I ask him these basic questions.

Just because he isn't understood, doesn't mean he doesn't understand.

I have to trust in God's infinite wisdom during these times.  I don't know why he doesn't give us and others a complete understanding of my boy's language when he so badly wants to communicate.  I don't know why his health can be so precarious.  I don't know why there has to be such evil that can take advantage of the weak.  Sometimes I just don't understand why I can't be allowed to completely understand him ...

But I do know just because I don't understand my Creator's ways doesn't mean he doesn't understand me.

Bible Verse I'm Loving Today:
Isaiah 55:8-9

8For my thoughts are not your thoughts,

neither are your ways my ways, declares theLord.

9 For as the heavens are higher than the earth,

so are my ways higher than your ways

and my thoughts than your thoughts.

Song I'm Loving Today:

Ellen Seidman wrote a great post about her struggles with society's assumptions with her son's speech challenges.  I'm not sure if I had it in my subconscious when I wrote this, but if I did I wanted to give her credit.  You can read her post here.