… from the bungalow

The Ups and Downs

23 Comments

I decided I’d like to share a couple of media clips with you to help provide some context. In The Little Professor, I talked about some of the difficulties involved in raising a child with special needs. Here’s an example…

shopping cartTLP used to have a hard time with grocery shopping. I’ve pretty much resigned to letting him ride in the shopping basket (he’s much too big to ride in the front seat of the cart), which I know is against the rules. It also pushes me to think creatively about how I place items in the cart.

This past weekend, at the beginning of our weekly family grocery shopping trip, Karin pointed out that TLP was soon going to be too big/heavy to ride in the shopping cart, and suggested that it might be good to push him to walk at the store. She’s right, of course, but I knew exactly what would happen: blood-curdling screams of fear and dissent; disapproving, uncomfortable, judgmental looks from other shoppers; my fear of having someone try to intervene or call the police because I must have kidnapped this child; etc. But rather than letting that fear determine my actions, I said, “you’re right. He’s going to scream, but let’s just try it for a few minutes.”

In the cart corral area at the front of the store, I asked TLP if he could please be my helper for a few minutes at the store and then ride in the cart. No. “Do you want to ride in the cart?” Yeah. “Well, help first, then ride. OK?” Yeah. He obviously doesn’t understand the first-then clause I’ve presented. “OK, come help.” No. Starting to whine-yell now. “F, be my helper for a minute, then ride.” Louder yelling accompanied by the shaking of head and arms. “Come on, F.” Yelling now accompanied by stomping. I grab his hand and pull him into the store. It’s already escalated to the point where I’m basically dragging a screaming child through the front of the store. I lead the family to the produce section just to get away from the check-out lanes. This goes on for a few minutes. This video is a clip of the last 30 seconds before we convinced TLP to pick out some bananas–his favorite fruit. (Kinda loud… you might want to turn your volume down a bit.)

That’s an example of the downside.

The other clip is a mobile recording of TLP and Yours Truly singing his bedtime songs. I don’t think I’ve mentioned it before (other than on my Facebook page), but almost every night at the end of his ever-so-important bedtime routine we sing two songs: “Godspeed” by the Dixie Chicks and TLP’s goodnight song that I’ve sung to him since he was a baby. There’s no video, and the sound quality stinks, but you get the idea:

You have to balance the downs with the ups. These few minutes alone with TLP every night save me. It’s one of the things I do to fill myself up again, and I know he benefits from it, too.

Chris

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Author: Chris

A dad with a self-evaluation complex. Also a music therapist, college enrollment administrator, and hippie-nerd.

23 thoughts on “The Ups and Downs

  1. Wow… that is crazy. It’s great to have video references. I don’t think you ever could have gotten that story across without that reference, or at least made it really ring clear to those of us that don’t have to deal with that kind of thing.

    • Yeah, that’s why I wanted to share it. Again, not for pity or consolation. I just like to provide perspective when I can. Thanks, Heather.

  2. Also, just to be clear, I sometimes take videos of my kids mid-tantrum so they can witness first-hand just how crazy they look. I didn’t take it with a blog post in mind. It just provided a good opportunity to give some frame of reference when I talk about F screaming, since I think most people either think I’m exaggerating or just can’t visualize what it’s really like.

  3. What does F think of standing on the end of the cart? Or standing by the handles, on the bars?

    Thanks for the video, it definitely put the story into perspective.. And the singing was heart warming. Thanks for sharing. 🙂

    Kell

    • Thanks, Kell. He won’t hold on to the cart. He’s got low motor skills (gross and fine) and is very hesitant, so that’s too much work/too scary for him. That’s why I’m trying to start weening him off of riding in the cart.

  4. Didn’t have to play the grocery store recording. We know what a distressed F sounds like. If only I had some answers, but I don’t. The night time recording is a gift to F and to us. It makes me cry, but it’s a cry of thankfulness that you can still love F like you do. I believe he loves you as much as F can love anyone. What a wonderful way to end his days.

    • I’m sure I know who this is, and maybe you forgot to put in your name. 🙂 At any rate, thank you. I sometimes wonder to what extent F really loves, but it doesn’t matter. He is mine and I am his. To me, his sweet voice and smile when we sing at night are signs of love.

  5. The audio of the nighttime song will be something F will cherish. My kids are teenagers now, yet they remember the private times that we’ve shared. It’s the best way to unwind and reconnect after a hectic, challenging workday.
    As for the mild tantrums – I’ve got my son on video several times when is was around 4. We look back at those videos and laugh hysterically.

    • That’s great! I’m sure they’ll be able to laugh at it some day. They seem to hate it right now, which is good. I want them to be able to see how silly they can be.

  6. I am extremely grateful that you put in the bedtime songs recording. F singing with you is the most beautiful thing I’ve ever heard, and I probably would have never heard it otherwise. Thank you.

    • Aw. Thanks, Laura! It really brings me so much joy sometimes that I can hardly stand it. One night when I was singing Godspeed to him, he spontaneously said “wing” right on cue and it blew me away. He usually says “wng” without the “ee” sound, but it comes out occasionally. It seems so simple, but it’s one of those things that makes everything else worth it.

  7. If you don’t mind my asking, what kind of special needs child is F?

    • His diagnosis is not very clear, so we treat the symptoms. He’s considered by his doctor to be on the autism spectrum, but he doesn’t demonstrate classic autism. He’s moderately cognitively impairs with sensory processing issues and severe speech apraxia. His developmental level is that of a child half his age. Physically my oldest, but cognitively and emotionally my youngest. He’s been treated for “leaky gut syndrome” for a couple of years now, which is common for kids on the spectrum. He’s on a very restricted diet and a vitamin and supplement regimen to fix his gut and reduce brain agitation.

  8. Let me know of your progress with this so I can be consistent with our expectations of him in the grocery store. I, too, have allowed him to ride in the cart, although it is already too much for me to lift. Pike is very helpful with supporting my discipline and helping me to stay firm, so together we can all work on this and try to help F transition to big boy expectations.

    • It’s sometimes easy to get into a pattern of enabling. In the past this was one of the battles not worth fighting, but it’s moved up the list. It’s hard to prep F because he still doesn’t have a great grasp on the concept of event sequencing. I think distraction is initially the best way to go. I could also try taking him just to get a handful of things; that way, we wouldn’t even get a cart and it would be a short trip. It might be a way to ease him into the idea, then just extend the time of shopping visits. I’m caring less and less about the possible discomfort of other shoppers. I just don’t want to upset F like that.

  9. I use one of the carts that has an adult seat attached to the front of it. It is kind of like the ones with front seats for children, but this has a bench seat for an adult. It is the only way I can my shopping done in peace.

    • That’s a great suggestion. We’d like him to start walking and helping out more, but there will be times when that isn’t feasible. At what store do you find these carts? I usually shop at Kroger because it’s close and most of their prices are acceptable. (There are certain things I prefer to get at Target, but I haven’t noticed these carts.)

    • And thank you for reading. Do you really have 5 kids with disabilities? Bless you.

  10. Pingback: Promises Guide: 6-10 (2/20) | ... from the bungalow

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