Recently, my wife and I have come to realize that we need to start looking at our son for who he is and not who we want him to be.
As simple as that sounds, it’s rather complex. Parents of children with special healthcare needs are often forced into looking at their kid’s development in terms of milestones. It’s never only about how far a child has come, but also how much further they must go.
Maybe it’s the daily therapy sessions that force this thought process, or perhaps it's the conversations we have with his school that focus more on skill building than they do on celebrating him for who he is. We’ve been stuck in this developmental rut where we only look at him as potential as opposed to accomplishment.
But now we’ve started thinking differently. Sure, we still want him to achieve at therapy, but I think we’re much more patient with him, I think we’re starting to accept him for who he is and not who we think he can be.
In some sense, that latter question—who he could be—is unfair to him. As parents, our job is to mold and guide our kids, help them toward independence, but not to dictate who they are going to be.
With our son, it seems like if we don’t dictate to him what he should be then who else is going to do it? In terms of ability, if we don’t insist that he’s going to walk or that he’s going to talk, who else will?
I think this desire to constantly advocate for our child has resulted in this impatient mentality or goal of trying to make him better than he is without not enough appreciation for who he already is as a person.
Can he walk? No, he can’t. But he can play a mean game of peek-a-boo. He can also come over and let you know exactly when he wants to be cuddled, and holy crap is he a good cuddler.
Can he talk? No. But he sure as heck can tell you what he’s thinking or feeling, especially if you do something that he doesn’t want you to do. Then it's game over: he’s going to make sure you know beyond a shadow of a doubt that you’ve wronged him.
Those things are good and important! Those things involve self-advocacy and the ability to express his emotions in a constructive way.
And yet, in the past we have looked past those because he wasn’t expressing those emotions verbally. But he’s expressing himself, and we were not giving him that credit because we were only looking at him as potential!
We’re changing. We’re adapting. And more than anything we’re appreciating him for the little man he’s becoming.
For more ideas on patience, take a look at the accepting, grieving, and adapting to life on this website.
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.