“Parenting With ALS” Chapter 81

When I was a child I walked to school uphill both ways. Seriously!

After my mom left, I really didn’t get corrected or punished by my dad as a kid - that was generally left up to my friend’s mom. 

My friend Reggie and I got into normal kid trouble, and when we did, Momma made us go outside and get a twitch. A twitch is a branch of a tree cleaned up. You couldn’t get a dead branch or a small skinny branch. It had to be just the right size and let me tell you THAT hurt like a son of biscuit. Soon, though, I learned that the quicker I cried, the quicker the whoopin would stop.

When I lived with my foster family and got into trouble, I would have to kneel with my arms above my head in a corner. Since you couldn’t sit back on your heels or rest your arms against the wall, it felt like I was there for hours. In reality it was probably only five minutes. Standing in the corner was for girls. lol

I learned from my past, so when I became a dad I deployed psychological warfare instead of physical discipline. When my kids slammed or locked their bedroom door, I took it off the hinges and leaned it against the wall. If they didn’t do homework or chores because they were distracted by gaming, I took the power cables from their systems so that they could see it, but not play it. I always enjoyed watching them walk up and down the stairs 10 times when they were told to stop running up them and didn’t listen. “Let the punishment fit the crime,” I always said.

Everyone has their own techniques for parenting their children, but how do you do this when you are living with ALS? I can’t imagine how difficult it must be to raise school age children as you lose more and more ability each day. When kids are younger, they need parents to be physically able to help them get ready for school and other activities. The younger they are, the more help they need. Adult children, though, need more teaching through communication.

While adult children don’t need the same hands on parenting, they need our support and knowledge. Even though I am stuck physically unable to do much, mentally I am still able to provide them the parenting they need. We (PALS) have to stay strong and confident because our role is just as important as it was before ALS. We understand that our children still need us. They need us to still be caring, funny, empathetic, and supportive. And of course, we have to be able to kick them in the ass when needed. I am a great listener now… I have to be since I can’t get away from any conversation.

Laura and I set our parenting roles a long time ago. Since she was with the kids the majority of the time, she was the disciplinarian. I was the backup, or as some would say, the closer. When the kids really messed up, Laura would say, “wait until your dad comes home.” For the most part, it was over before I got home. On the days it wasn’t though, all I had to do was give them “The Look.”

Life is funny. We set these roles not knowing that one day I would have ALS, and that all I would have at my disposal daily is “The Look.” Today, we still have the same roles. The only difference is that I am already home. Now our children tell me, “For a dad that can’t talk, you say a lot with your face.”

When I am Falling Off My Wheelchair Flopping On The Floor Laughing (FOMWFOTFL). Not everyone can use this one. I look like this. You can really see the smile on my face.

When my children need me to listen and have someone to cry with, I really get emotional and can’t help but show it on my face.

When we are having a good time singing and dancing, everyone better stand back because things can get a little wild. I am not allowed in the clubs anymore because last time was a bit crazy with bodies getting thrown around and toes getting rolled over.

With a house full of women - including all but one of the pets - things get loud. When the girls start bickering, I sometimes have to step in and give them “The Look” to get them to stop. One time I looked so hard that my daughter had a flashback and started crying, so I had to back it off a little.

Of all the looks I have, Laura loves it when I give her the “Special” Look. You know that special “it’s time” Look. I don’t know what Look you’re thinking of, but for me it means I tried to fart, but it was actually a shart. The worst part is “The Look” she gives me back.

In the end, parenting with ALS brings it to another level. I love deeper. I find myself staring at my children like I did when they were babies. Looking at their freckles or their eyes, and instead of wondering who they will grow up to be, I am proud of who they have become. Because I have to type everything out, I say more with fewer words.

Stay strong and keep on parenting because your children need you. Remember, if all else fails, give them “The Look.”

Love and Blessings

Please leave a rating and comment below! I love hearing from you.