Don’t Always Cut Your Special Needs Kid a Break

18 Apr

The night Jackson was born, our whole family flooded into the room to see him. He was quiet and wide eyed. He took in his surroundings and literally knew, at less than an hour old, that every single one of these people were there to see him.

It’s like Jackson knew he was the first grandchild and nephew, and God’s special gift to our family. How very true that turned out to be.

But Jackson…he’s my guinea pig. I had no idea how to be a mom. I thought I had this understanding of what it would be like, but NO. The first year was one big learning curve.

By the time he turned one, I felt like I was starting to get the hang of it a little bit. He was sleeping through the night. Ev and I had taught a person to WALK! And then he got cancer. Talk about shaking thing ups. I didn’t even know how…where…to start.

But a little tough love from a nurse snapped me out of it. I remember standing at his bedside as she worked. I confided in her, as I have many nurses. I told her I was scared to hold him because I didn’t want to hurt him. And you know what she said? “You’re going to have to get over that.”

At the time, I thought: Ouch. But I’m so thankful for her honesty…she was totally right. I did. He needed me.

And so despite fear, I picked him up. Despite fear, I learned to give him shots and take care of a central line that came out of his chest. Despite fear of confrontation, I challenged doctors on their wisdom and nurses to double check an order. In all that, I learned that having a kid that was sick didn’t change the core of what was important in parenting.

I was still teaching a person how to be a good person.

Your first feeling is to protect them at all costs. Give your sweet child a break because things get hard. When life is tough, shouldn’t their parents make things easier?

Yes and no. Love, support, understanding. Absolutely. But…

  • When Jackson would run ahead of me with his IV pole and I couldn’t catch up, I would stop him, get on his level and teach him to wait. Because it was really important not to pull that thing out of his chest!
  • When he didn’t feel good, that was perfectly fine. We could rest or watch a movie or play a game. But he had to be nice. I didn’t tolerate being yelled at or pushed or hit. This was hard for me, too.
  • After a long hospital stay, every time we got back home, Jackson had to go right back to sleeping in his room again. He might not stay there all night, in fact, sometimes it only last a couple of hours, but we started him there every night. Because that’s where he was supposed to sleep. Routine was important.

    Well...he always STARTED off in his bed.

    Well…he always STARTED off in his bed.

  • With Abby, hitting her milestones took much longer than the typical kid. It took her forever to crawl forward. I would sit on the floor, put a toy just out of her reach and show her how to get to it. But she had to do it. Sometimes she would just cry and we’d take a break. But she learned.
  • When Jackson doesn’t hear what I’m saying, and I’ve repeated myself three times, I make him stop and look at me for my answer before I repeat it again. I don’t know how many times I’ve said: “Stop and wait for the answer.” It’s harder for him to hear stuff, sure, but if he doesn’t give it his full attention to hear what I’m saying, that’s not my fault.
  • When Abby falls, I stand back and give her space. (Unless, of course, she’s really hurt.) But she’s learning how it feels to fall and get back up. This morning she got stuck in a box in the playroom. I made her get herself out. I won’t always be there to bail her out.
This morning's obstacle.

This morning’s obstacle.

I know Jackson and Abby both have their mountains to climb. Right now, I have no idea how to deal with Jackson’s angry outbursts or his attitude. Every new stage he goes through, I’m learning right beside him. He’s my guinea pig, remember?

But I know he’s a good kid. Wild, kind of bossy, but a GOOD kid. And even though it’s difficult to play the bad guy, I’m teaching Abby a little steel to go with her sweet. It may make me feel terrible some nights, especially after a hard day, but I know it’s going to pay off in the long run.

I think.

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