OK, technically your children's meltdowns don't take five years off your life because I would have been dead a long time ago. But they sure feel that way. I have still not totally recovered from one on Memorial Day Weekend.
Max's sensory issues have dwindled over the years, so that noise and crowds don't set him off like they used to. Still, Max is a boy who likes to have things work out just so. And life doesn't always work out just so. This means that the Memorial Day parade we attended last weekend in Stone Harbor, NJ, wasn't as big as the ones in years past. There were just a handful of fire trucks and rescue vehicles. Also, Max had gotten it into his head that he was going to ride on one of the trucks, but he hadn't told us. So there was disappointment on two levels. Max is usually an even-tempered, cheerful type but not when you get in the way of him and his fire truck dreams.
We were at the starting area right as the parade began, and we followed along on the sidewalk as Max stomped his feet and wailed. I didn't have any tissues on me (bad mom incident no. 802,549!) so I ducked into a restaurant, got some napkins and mopped his wet face.
Stomp stomp stomp. Sob. Screeeeeeeeech. Nothing I said placated him; he was in the meltdown zone. People stared. I don't really care at this point what others think, I just wanted peace and to enjoy our outing. We proceeded on the sidewalk, our own display of family dysfunction.
As we stood in the intersection where the parade turned onto Main Street, I caught the eye of a police officer standing nearby. "Officer, the parade this year isn't that big because of the weather, but next year it should be longer again, right?" I said. And he came over, looked at Max and said, "Yes, it's smaller and yes, young man, don't worry next year it should be bigger again!"
Max wasn't buying it. He wailed some more. The officer wisely walked away to direct traffic.
A little boy nearby asked me, "What's wrong with him?"
"He's not happy," I said, stating the obvious.
I wanted Dave to take him back to the car, as I didn't want Max to think he could get away with behaving this way when he's upset. Dave thought we should calm him down by walking to the fire station. Disagreeing with your spouse as your child loses it only makes things more fun. I gave in. We started to trudge the two blocks to the fire station. The streets were filled but, like the biblical Red Sea, the crowds parted to let Max through.
When Max gets irrational in this way and wails and yells, it is completely draining. I felt bad for Sabrina, who at 12 years old is already embarrassed by everything, and Ben, just a little guy at his first Memorial Day parade. I felt bad for Dave and me, two parents just trying to show our kids a good time. And I was distraught with Max for ruining the event for us all, even as I understood where he was coming from.
At the fire station, Max continued to cry. A firefighter walked over to us; she remembered Max from a visit two years ago. She took Max and Dave into the station to use the restroom. Later, Dave told me what had happened. She had reiterated to Max that this year the parade was smaller because of the weather, but next year it would bigger.
"Not true!" Max told her. (See: "irrational.")
She also told me and Dave that we could call ahead of time next year and see if maybe Max could ride in a truck. We'll be making that call.
By the time we walked away, Max had calmed down. I didn't. We got in the car and headed home. When I spoke with him about his behavior, he grunted and said "No!"
This weekend was relatively calm. Still, a week later I am still thinking about what happened and wondering what we could have done differently. We talk events through with Max ahead of time, but unexpected situations happen. Maybe we should have taken him back to the car. Maybe there is some technique we have yet to figure out. Maybe this behavior, too, will recede over time as Max matures.
Maybe.
You have in my mind two choices.
ReplyDelete1) Understand that for most children the way to prevent or at least diminish future meltdowns is to not give into them. That means no going to the Fire Station but instead going back to the car. This teaches two important lessons that you take away if you desperately scramble to appease a meltdown. The first lesson is that the meltdown is NOT going to accomplish anything other than your removal from the situation. It certainly seems like Max is smart enough to know that there is cause and effect when his meltdowns have you taking action to appease him or don't . The second is that he can survive being unhappy without anyone doing anything. That's a powerful lesson that you are depriving him of by running to the fire station etc...
2) Decide that for Max those lessons would be lost on him or accomplish too little at too high a price and accept that Max may or may not always have meltdowns ( he may indeed mature out of them) but that you are willing to do whatever it takes to make him feel better in the moment and try not to stress about it.
Unfortunately, even though these kids are -smart- enough to understand cause and effect, that means -nothing- to them in the moment. Max seems to be a lot like my son. When my son is overly excited, there is a change in routine (even for something positive), or he is tired/hungry, he will melt over seemingly silly things. My son also has CP. He has to work so hard to keep things together under normal circumstances, that he has little reserve to handle extra inputs. Things that work for neurotypical kids don't always work for our special needs kids. It can take a long time to figure out what will work.
DeleteIt's so hard trying to balance giving them great/normal experiences with keeping enough routine and normalcy to enjoy said experiences.
Yes, it's as Megan described. While I do wonder about whether we should have taken him back to the car, in the end, I am not sure that (or repeatedly going that route) would work. This has to do with his mindset, and how upended he is when things don't go as he envisioned they would.
DeleteCause and effect knowledge also does little for neurotypical kids who melt down in the moment. The issue is whether when time after time after time there is no reward for melting down if it will reduce the incidents for kids who are aware ennough and have the cognition to remember what went before but have sensory or other neurological issues that make meltdowns more common. The answer may be no but it will take a lot of trying to know if it will work.
DeleteDoes Max seem embarrassed about having a meltdown or acting out in public? I remember in one of your previous posts you mentioned that you wanted Max to have more typical friends, and since most boys his age aren't having tantrums anymore it would set him apart even more from them and would be off putting. You could try to get him to try to calm down on the basis that he was upsetting others, since he seems to care about others emotions, especially your family members. You could tell him that he's upsetting Sabrina, who I imagine is very embarrassed about having her brother meltdown in public, especially now that he looks older. I'm not sure if he has that emotional cognition, but it may help by going at the emotional angle especially if he doesn't have the rational cognition to understand why meltdowns aren't appropriate. Good luck!
ReplyDeleteHe does not have a shred of embarrassment about it, yet. And it's not that he doesn't care about how this affects Sabrina or our family, it's that he get immersed in Planet Meltdown and can't seem to think about anything else other than what's bothering him or respond to whatever we say. I hope that emotional cognition will keep coming along, as it always has.
DeleteI'm sorry you had to go through this Ellen, I felt so frustrated for you as I read your recount of the day. It has to be incredibly difficult for you and Dave, but also for Sabrina who is at an age now where she understands much more and is more affected by Max's behavior. I wish I had some helpful suggestions, but all I can offer is support and encouragement. I'm not sure if you have discussed this before, but is Max's rigidity attributed to sensory issues? I totally get you wanting to discuss Max's behavior with him...but unfortunately, if he doesn't understand on an emotional level what is "acceptable" and "unacceptable" behavior, I don't think it will resonate much and may just frustrate you both even more. Hang in there.
ReplyDelete--Kate
Thanks, Kate. I don't think this has to do with sensory issues, but it is worth bringing up with the neuro at our next visit.
DeleteWe enrolled our almost teenaged son with CP in an intensive group behavior program because of anger and behavior issues. The parent education portion reiterates what I've read in other books: kids these ages do not have a fully developed brain and it is almost useless to reason with them in this state. We have to get them to a calm state before trying to reason. It's exhausting!
ReplyDeleteAh, yes, that's true of teens of all abilities. I hadn't considered that as a factor.
DeleteI have a problem with emotional regulation until this day and I am 41 talking him down and teaching him to talk his own self down is important skill to learn
ReplyDeleteVickie, I would be grateful if you could share some tips on what you've learned about talking yourself down.
DeleteI so feel your pain and empathize with your frustration and doubts. My 10-year-old daughter feels things very intensely and occasionally loses her *&$# in public, and it's the worst. Like you, I understand what has set her off and want to comfort her, but I'm also embarrassed and irritated that she can't keep it together. I have no advice, only empathy...
ReplyDeleteThanks, Jenny.
DeleteDid Max know you wrote this and is he ok with it? It seems awfully personal and even if Max is unable to read it himself, people he may know could read it.
ReplyDeleteYou make a great point. While I completely understand that meltdowns are hard to handle and getting support and advice is helpful, Max's privacy is crucial, as well. I wonder what Max would think in the future if he read this. I've personally struggled with meltdowns, and they're humiliating and hard to deal with. If something about my meltdowns was posted to the Internet without my consent, I would be livid. I hope that Max will understand in the future that everything here was written out of love and support for him.
DeleteI love this blog and have been a fan for 4 years now, but this post crosses the line a bit, privacy-wise.
Agree. I understand that this situation must have been difficult for all involved, but as another person with CP, I gotta say I'd be mortified if my parents wrote about a moment like this in such a public space.
DeleteOn the other hand, this is a space where Ellen shares her feelings and experiences with love, humor and above all honesty. I feel it is important that other families get a realistic picture of her struggles, meltdowns included. Thanks you, Ellen, you make many of us feel less alone. Claire
DeleteKathryn, thank you for bringing that up (and caring enough about Max to say it). It is a valid point. Max does not know that I wrote this. Max does not quite understand what a blog is. I have always half-joked that when he gets to the point where he does understand that I've blogged about him and he gives me hell for it, I'll be glad because it would mean he's achieved that cognitive level—and then, I will be able to explain my intentions. A few years ago, I had a heart to heart with a friend about this blog. I write it to celebrate Max and others like him. I write it to air thoughts and feelings—and get feedback on situations I struggle with—to better benefit Max. And I hope, in doing these things, I help other parents along the way. But I was having some doubts, and working them through with my friend. She pointed out that anyone who knows Max knows certain things about him. I keep that in mind when I write. People who know Max do know that he behaves like this at times. So while I do my best to avoid anything too personal, this to me didn't seem to cross a line because you'd know if it you know Max, same as you'd know he has cerebral palsy. It's part of who he is...right now, at least. Perhaps I should see if Max is up for writing about his feelings about what happened, or something else, it's been a while since he wrote a post.
DeleteShared on my Emotional Fitness Training Tips for Parent's Facebook page.
ReplyDeleteMy daughter's public meltdowns seem to take five years off my life too. I feel for you and your entire family.
ReplyDeleteThanks, Linda. Seeing this comment made me realize I neglected to email you back—I just did.
DeleteI feel your pain and frustration Ellen! It also reminded me of an incident that happened a few years ago when my daughter was about 13. We were vacationing with family and my daughter just LOST. IT. She became upset about a stroller and not being able to push it (our group split up & the mom/baby/stroller went in another direction). She started to cry and scream. She was enraged and fell to the ground refusing to get up. My sister and I tried all of the usual,tools of persuasion to no avail. I wanted to get her back to the safety of our car so she could wind down and also to keep everyone from staring at her. My sister bent down to try pick her up and my daughter yanked her shirt and bra down leaving her dully exposed! We bring that incident up to this day and laugh each time! My daughter is now 18 and stilll gets frustrated often but not to the degree she used to. Max will also get there, give him time. Nowadays, when she has a meltdown, I try to reason with her for just a minute or two and then I do not talk to her or show her any emotion. I walk away. I let her go through her process. I have found that the more I try to reason with her, the more frustrated/enraged she becomes. When she calms down, she usually says "sorry Mom, I no do that anymore". She will though! 😉 But when I look at the whole picture, we have come a LONG way, as will you and Max!
ReplyDeleteNot dully exposed. Meant to write FULLY exposed!
DeleteFor me, it happens due to stress than to disappointment, but I understand completely.
ReplyDeleteI have a 14-year-old son -- autism, non-verbal. The thing that concerns me most about my son's melt-downs is that he is now 5'5" and 130 pounds (still growing). Someone could easily be hurt. When little a melt-down would include swats. With size swats turn into hits and shoves. Just so you know, this is something that is being worked on in our family. The behavior specialists that I have worked with have basically said to do what Annie (first commenter) said, but modified to meet the level of the child (age, maturity, development,...). With Luke that means letting him know expectations, making sure there are words/phrases on his iPad to express feelings and that he knows where they are (this is forever evolving). And not giving in. In your stated example this would be staying there until he calms down and then going to the car. Sounds so very easy when it is written. Though at this stage it is probably more me than him. And also I don't want to disappoint the older sisters. Many plates to keep spinning.
ReplyDelete