New School, New Assessments

First day of school!

Two weeks ago, Jamie started at his new school, bringing along a whole slew of issues that we have faced in the past and are pretty much used to. For instance, there is always the phone call from the nurse asking all sorts of questions about his health history and how we manage his asthma. Are there any signs to look for? In a nonverbal child, it’s not always easy to tell when he’s having trouble breathing or is getting sick.

And Autism and Cerebral Palsy are always on board for a good time. <sarcasm>

Of course, there are the meetings with the teacher, principal, and therapists. Clueing them in on how Jamie interacts and what he’s capable of at home. Most think he’s not capable of much because if someone is willing to do the work for him, he lets them. He’s not stupid, after all.

The parent assessments, however, are an absolute heartbreak for parents of kids who can’t do much for themselves. And as it goes, I end up looking back to see where we were – so I can see where we are going. For a while on the day of the parent assessment, I’m mopey. I mope because honestly, we aren’t where I thought we would be.

My child may never be able to dress himself. He can’t manipulate buttons on a shirt. He can’t stand, pull up his pants, and adjust them all at the same time. That takes too much coordination and too much awareness that he just does not possess.

When I’m asked what his plans are after graduation, I’m just like…I dunno. He doesn’t make plans and I’m not even sure if he thinks in future tense. He’s nonverbal. He doesn’t understand the concept of time. How in the hell would I even know what he’s thinking? I wish to God I did know. Although, maybe that too would be heartbreaking.

What if he’s thinking, “Why am I like this? Why am I trapped in this body that doesn’t work? Why can’t I do the things I see other people doing so easily?”

More than likely, knowing him, he’s thinking, “Why aren’t you getting me the cookie I asked for? Where is my dinner?” Jamie likes to eat. It’s what he lives for. That and his SpiderBaby and his favorite shows. He’s 15 and still loves The Backyardigans, The Fresh Beat Band, and Jack’s Big Music Show. He is a 5’7”, 120-pound toddler.

Some of the questions on the parental assessment are just the worst. You’re supposed to answer “Yes, Yes with Assistance, Sometimes, or No”

Student is able to schedule appointments appropriately
Student is able to interact with peers at a normal age level
Student needs no assistance with toileting
And so on…

Well, no. My student isn’t able to do any of that by himself. He needs complete help with every little thing. I have to watch him like a hawk while eating to make sure he doesn’t choke on the tiniest piece of food. Because he will. I’m checking every room for anything that could be dangerous to him the minute I walk into it. Hot coffee cup on the edge of the counter within his reach? Moved. An errant penny that my daughter missed when putting her money back in her pocketbook? That looks like a delicious shiny treat! Move it. A Polly Pocket shoe looks just like a piece of candy, FYI.

So many things can harm Jamie, and I’m constantly on point for making sure nothing is in his reach that could be detrimental.

For this last assessment, I actually wrote “I’m not sure how to answer this yet” for things like, “Will the student be living in a group home?” “Does the student desire to work outside the home?”

I want to write in all caps:


Jamie and his dad on their new tandem bike.

And if you really want to know what keeps me up at night, besides worrying about his health, money, bills, and you know the regular stuff you go through with neurotypical children (my daughter), it’s the fact that I will always have a toddler in my home. I pray he doesn’t get any bigger. I pray that we will be able to care for him for a long time. But I worry that my marriage will suffer. That I will run out of patience. That I might snap under pressure, because you know there’s a ton of it. That I won’t have a life.

Most parents get to raise their kids and then watch them move out and have a life of their own. Fall in love, get married, have kids of their own. But my son won’t do any of these things. He won’t ever know what it’s like to have a first kiss or a first job. Or a fulfilling career. He won’t ever get to have his own place. Or do anything without his mom or dad telling him it’s time to do it and then doing it for him. He won’t ever get to make decisions about his own life. Someone will always do that for him.

I won’t get to send him off on his first date, anxiously awaiting his safe arrival back home. I won’t get to dress him for prom in a tux. There won’t be any wedding photos with his beautiful bride. I won’t get to be a grandma by him. My daughter won’t be an aunt unless her husband has siblings.

My husband will never get to teach him to drive or play catch with him in the yard. He won’t get to teach him how to rebuild an engine, change the oil in his car. Blow snow from the driveway. Mow the grass. The general upkeep and home maintenance. The things that dads teach their kids.

Instead, we get to dress him every morning, brush his teeth for him, wipe his butt. We get to decide when he needs to walk and when he needs to ride in his wheelchair. We get to decide what he eats for every meal or snack. Sometimes he is able to make a choice, so we try to include him, give him the time to answer.

We get to make every decision for him. In some ways, it’s the sweetest thing I’ve ever done. But in others, it is the absolute hardest and I can’t imagine doing this for the rest of my life. We’ve had to make decisions about his care and what happens to him when we die if we go before he does.

Hats off to those parents who have had to place their kids in group homes. I’m not sure I’m strong enough to do that. Maybe it’s what he would want. How could I know? He’s incapable of telling me.

Have we failed him? Have we not pushed hard enough? Have we coasted along when we should’ve been full speed ahead? Did we not have realistic goals set for him?

In two short years, Jamie will be graduating high school. I’m not sure what happens after that. I do know one thing. I will always be his mom. And as his mom, I will fight for him till there is no breath left in my body.

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