As a parent to a child with special needs who has limited language, sometimes feelings – both physical and emotional – can be difficult to decipher; I often feel like I’m playing a guessing game as to what he wants, needs, where he may be feeling pain – or if he even is feeling pain.
The good emotions are usually easy to see and decipher; the not-so-great ones are when the guessing game (and mind-jarring anxiety) begins.
Unless David is asking for food or a movie, most of his language is scripting. He uses movie quotes and phrases to express different things, both in times when he is happy or excited, and also when he is anxious or overwhelmed. When he gets anxious, he starts scripting something (usually the baby shark song) over and over again, really fast – and squeezes his eyes closed.
When he is happy, he is usually giggling while reciting phrases from his favorite movies. For instance, in this moment – while outside, in his element, wind blowing in his face as he rode Grandma and Grandpa’s UTV through their property, he was giggling and repeating “To Infinity, and Beyond!” while spreading his arms out like he was flying Buzz Lightyear style.
For us, and for many with a similar dynamic, our kiddos can understand much more than they can communicate back to us. A galactic catch-22, because knowing this causes the vicious cycle of questions running through my head to begin swirling.
Is there something else I should be doing for him?
Am I doing enough to care for him?
Does he know how much I love him?
Is he getting sick, or is he fussing because a gas bubble is working through him?
Is he getting frustrated and overwhelmed about something, or is he in pain?
Sometimes, it feels as though while he is getting older and making huge gains in so many areas, it feels like communication in some ways also becomes more difficult.
David is now so much more aware of his surroundings; to the point he knows immediately if I’m not driving to where he wants to go. He will point in the direction I “should be” turning (he is amazing with mapping), and repeat over and over where he wants to be going – becoming more and more anxious as he repeats himself.
When he started doing this, we were overjoyed; it was the beginning of his self-advocacy. In the same breath, I worry because he cannot tell me how his day was; was anyone mean to him? Was he left alone at all?
This many times leads to more internal struggle, because his frustration is visible much more frequently – even though he isn’t able to express it verbally. Not everyone automatically assumes or accepts that behavior IS communication.
Communication in all of its forms is something most people take for granted, mainly because for many it just comes naturally.
But when you spend years hoping to teach him to use his voice, even the smallest steps are cause for great happiness. Hearing your child put together new sounds, a new string of words, or even building a sentence for the first time about something – anything – is pure joy. Knowing how much work it took for them to put that together makes you appreciate each time it happens just as much as the time before.
However you continue to communicate, I’m listening love.