Life with kids is mentally exhausting. Not only is it exhausting in the moment, but as they get older, I replay conversations in my head, and try to think of new ways to get messages through to them. Saturday was a day of big ups and downs with our son, David. He had mostly great moments, with some loud, door-slamming/stomping ones sprinkled in there. I was hoping Sunday would be so much better. He did great getting up, but the moment Knut asked him to bring the kitchen slop out to the chickens, he melted down. Right before church. Again.
It comes out of the blue. I suppose sometimes we see it coming. Getting David to do basic things our other kids do is either easy as pie or like pushing a boulder uphill. You don’t always know which scenario it will be when you ask. But once you ask, you are committed. You give in once, and he will push hard every other time tenfold. It’s just exhausting.
After our roller coaster of a day emotionally on Saturday, I spent some time just sitting on the couch after the kids were in bed, and just reflected on our situation…again. I thought about all the words that David had yelled at me during the day, and how it was so hard to make him understand that some things just need to be done. I felt like I just couldn’t get through to him.
I thought about how we had never sat down and fully explained to David all of his diagnoses. He knows about his food issues. But does he know why he visited a psychologist and therapists? Does he understand he has learning disabilities? We’ve just always told him, “you just learn differently” or “your brain just works differently.”
Have I ever acknowledged to him fully that things just aren’t different for him, but they are harder for him?
I was thinking that he’s getting old enough that maybe I should tell him the name of all that he’s dealing with. Maybe I should lay out the choices that the doctors gave us, and the ones that his dad and I picked, and why.
I realized I was trying to shelter him for so long about these things, because I didn’t want to make him feel stupid (because he’s not), or make him feel like he had any excuse to not do his best. I was texting a friend about this earlier last week, and she texted something back along the lines of, “Yes, but Gretchen at some point don’t we all have to face our limitations?” Wow. I’ve been thinking on that a lot.
So Sunday morning, he was melting down before church…again. Knut had talked with him, and then was letting him have some alone time to calm down. It was my turn to go in and try to snap him out of his mood and get him in the car. I went in with a little yellow notebook and a pen. I just sat down and started writing.
“David, I need to tell you something about yourself.” He looked up. This was new. I asked if he remembered when he went to the “head doctor” and took all those tests and how they were all so nice. Yes, he remembered. I explained to him that he didn’t just have Alopecia. He had some other problems that he also dealt with everyday. I wrote down each diagnosis, and explained what about each diagnosis made his life hard.
I gave each of his daily struggles a name, and it was the first time he had heard these names.
I can’t believe he’s never heard these terms.
I could see his wheels turning. Under that I wrote out all of the treatment options that were offered to us, explained which one we chose, and why. I said that when he was 18, if he wanted to pick a different treatment option, he certainly could. He nodded and said, “But I like the one you picked. That makes the most sense to me.”
(FYI, David does not have autism. We were just talking about how kids with ADHD and Autism have SPD in common.)
I showed him the things the doctors predicted he would be able to do, and what he’s actually been able to accomplish because of his hard work and diligence. Here he had thought that he was always behind, and not very smart, and he realized that his hard work had brought him further than anyone could have imagined. I told him how the world doesn’t always understand diagnosis’ like this, and some of the obstacles that will come down the road that he’ll have to figure out.
I then told him that we can either do 2 things as his mom and dad. We can treat him like he is disabled. That would make sense, because it is a disability. Things are legitimately harder for him. Things are hard for him all day long. We could tell everyone around him to treat him differently, bend to not upset him, and make his life easy. I called this the “disability land.” I told him this land was kind, and it was fair. It treated everyone according to their abilities. Not everyone understands disability land, or even wants to understand, so it’s often full of pity and misunderstandings, instead of respect. Sometimes it’s okay to stay here, and just take a breather.
The other place is the “real world” land. There he is expected to sit in Sunday school just like all the other kids. He will get hired for jobs because he’s clearly the best worker. He will get graded and compete with other students, on their level, not on his handicapped level. This path matches the things that he dreams about, his goals, and wishes. But this is the harder path. This is the path that will require we continue doing some occupational therapy at home, force the brain to make new pathways, and work hard on self control, and explaining social cues that his easily-distracted brain doesn’t always pick up on its own. It is the big work-intensive path.
It’s the path we picked. I told him, that when he gets his standardized test done every year, I can choose to give him the ADHD handicap, or I can have him test like a normal kid. I pick the normal kid test every year. I told him that’s because I knew deep in his heart, he would want to compete for a job someday without a handicap. I knew deep in his heart he was an overcomer. (He thought about this and said, “Well, I’d rather push to learn a lot of stuff than to just get good grades. Learning stuff is much better than just getting a good score.” That made this homeschool mom’s heart jump for joy to hear.)
I basically told him that his dad and I had picked the harder path for him, but this other world was still available. We just didn’t think he’d want it. He agreed with us. I told him that decision we made has consequences just like all decisions. It means that life will just be hard for him. Simple things will not be simple for him. He was going to have to work twice as hard as everyone else. But the good news was, each year would get better, easier, and in the meantime he will develop a work ethic that will surpass many of his peers. His work ethic is one of his greatest gifts. And if he ever wanted to pick a different treatment plan, just to try it out, or even just to get a break, we would be willing to consider it. But as of now, we were picking the path of OT prescribed activities to open up those neurological pathways, and hard work.
I told him that doesn’t mean that he doesn’t need to go back to disability land to rest. It doesn’t mean that we don’t have to consider that some of his needs are different than other people’s needs. It means that we are choosing which standard he will go by, and we choose the standard of real world land. We will just have to work harder and with more creativity to reach that standard.
David was quiet the whole way to church. He was deep in thought.
He made it through Sunday School for the first time in a month, and then he and I were assigned to the nursery duty during the main service. There has been a lot of kids in the nursery in past weeks, but there was only 2 in there this time. As we played dollhouse with the little toddlers, he just asked questions, and I answered the whole run of them.
We talked about how he not only has disabilities, but he has abilities that not many other kids have. For instance, he is testing nearly 4 years ahead of grade level in math. He’s just started computer programming and is fantastic on it. I told him that it was very likely that my smart phone was developed by someone who had the same diagnosis as he did. He has great abilities. We talked about the skills he would have to learn to go to college. We discussed different strategies to developing those skills with which he struggles.
All of a sudden he understood all that Knut and I have been trying to do. He understood why he got certain chores, why we made him do things in a certain order, why most of the rules in his life exist. He understood why we made him do things he hated like go to Sunday school once a week, do school subjects that he didn’t like, do certain exercises every day. It was like this big lightbulb went off in his head.
“You’re preparing me for the real world, not disability world.”
“We are. But we know it’s not an easy path. It’s really hard on you.”
“Thank you. It’s what I want too. I’m so sorry I’ve been so mean to you guys when you were just pushing me to do my best, because you believed I could.”
And I grabbed a tissue.