What's That Word?

I’m looking for the word to describe how I feel on these kind of nights. Bewildered? Weary? Exhausted? Mixed with a weird sort of peace though, because I know I can handle this. I need a word for every extreme emotion at once. None of them quite fit. Maybe I should make up my own word. Barabajagal? That’s not my word, it’s Donovan’s I think. It’ll work.

We’re a week into summer break from school. Lilah just graduated from elementary school and is moving onto middle school. Yikes! We’re getting ready to travel for 3 weeks. Tom left today for a Cheap Trick show - the beginning of touring season. For us, it’s kind of always touring season.

 I have a lot on my mind. I’m ambivalent about summertime. I love the warm weather and the beauty of nature, the fun and playful feeling, and just the time off from the grind. But it’s sad to see Tom go. That’s the part that’s really hard about being married to a musician. Liam asked him when he’ll be back, and Tom said Christmastime. Sadly, it’s not much of an exaggeration.

 I’m trying to wrap my head around packing for a 3 week trip. We spend two weeks on the west coast with Tom, then fly to the opposite coast to the beach in South Carolina with my family. This will be our second trip flying with our service dog Blue. There’s so much to do and think about - making arrangements for the house to be taken care of, our other dog Monte (who we wish we didn’t have to leave behind), the newly launched website. As long as we don’t forget meds and Blue’s service dog vest, we should be good.

 Also, I have to mentally prepare for whatever curveball autism or the dog will throw at me on travel day. I’ll try and brilliantly pack carry ons, prepared for anything, while not packing too much to lug around while corralling two kids and a dog, any one of which may impulsively take off and escape me at any moment.

 Like I said, so much on my mind already, and Dennis the Menace rears his head. Yes, that would be Liam. A week out of the school routine, and he’s turned into wild child. “Demon child” Lilah called him today. He didn’t want school to end, and neither did we. Then it’s all on me, 24/7. No structure and work to tire him out by the end of the day.

 He wants to be outside all the time. He loves to play ball in the backyard. That’s great, but I can’t  do anything else while he’s outside. I have to keep a close eye on him, or he’ll hit the ball over the fence and try to climb his way out. Now he’s getting big, and it’s getting very hard to find obstacles to keep him in. He’s persistent and fast.

 Tom and I have been like a couple of old forgetful people the last couple of weeks. We keep having to find new hiding places for the deadbolt keys. We have to keep all doors to the outside locked. Otherwise, Liam is out the door before we even realize it. He knows all the hiding places, and has no trouble pulling up a chair and getting the keys. We’ve hidden the keys so well, we have hidden them from ourselves. Now we’re getting into it. “Where’d you put that key?” “We’ve locked ourselves in. Hopefully there’s not a fire.”

 Today, right after Tom left, I played outside with Liam for a little while. Then it was time to go in to get ready for Lilah’s vocal lesson. But when Liam is doing something he likes, he doesn’t want to stop, so he doesn’t cooperate. He doesn’t listen. He doesn’t follow directions. He doesn’t care about consequences. He’s in the moment. He runs all over the yard for about 30 minutes before I finally corner him. He’s gotten very good at this game, and I’m growing tired and weary.

 Finally I catch him, wrangle him inside, lock all the doors and hide all the keys. Liam is mad. He wants to play outside. He screams and yells in protest. I need a few minutes to pull myself together. I try and give him his iPad so he can chill out for a minute. But no, he’s mad, and it’s intense. Liam gets this very intense stance when he’s mad, almost like he’s having an anxiety attack. His muscles are all tight. He growls. A lot of times he throws something.

 This time he hurled his iPad right at me. It flew past my head and hit my bedroom dresser, breaking the drawer pull. Amazingly, the iPad is not cracked. Now I am angry. I muster up all of the energy I have to put him in his place. I tell him his iPad is gone, for a long time. He gets even more mad. I pack up his Wii and put it away. Lilah tries to intervene and talk to him. We both know it’s not going to do any good, but she tries anyway. Poor girl, she wants to help. But he pulls her hair and fights with her too.

 Not to worry. We are experienced at this. It’s a meltdown, and it’s a part of our lives. It’s an ugly part of autism. It’s something all of us autism families know quite well. There are generally only a couple of ways out of it. We can tackle him into a bear hug and try to force him to calm down, or we can back off and step away.

 It’s moments like these that keep some families isolated at home. I’ve experienced them a enough times in public. It’s mortifying. All I can do is step back, give him some space, and quietly breathe. I feel bad for him, us, and everyone around us. But I have to just turn blinders on to the world around me. I can only focus on keeping him safe. And I know the feeling of true unconditional love. I can’t really be mad, and I’m not. He can’t control this. He really is in another world, overwhelmed by something we cannot fully understand.`

 He calms down once we back away. We know what to do next - redirect. We come up with a distraction to make him forget about that last struggle. Maybe we try to make him laugh, or talk about something else we can look forward to today. We get ready, get into the car, and pretty soon he’s fast asleep. He always falls asleep after a meltdown like that. It’s sort of like the aftermath of a seizure, like it zapped all the energy out of him. I am wondering, did he have the meltdown because he was tired, or did the meltdown wear him out?

 He remained hard to handle the rest of the day. He was stuck on asking for all the things I took away from him during his rage - his iPad, his Wii, sleeping with mom tonight. Taking away the things he loves the most - it’s the only consequence that even comes close to making him think about behaving. It only works sometimes.

 When he’s out of his normal routine, the things he loves, the things that are familiar, become very important. It’s like he’s seeking a way to comfort himself with what he knows and loves. That familiar thing may be a favorite toy, activity, or a favorite food. It may seem to the outside world that we parents are giving into the demands of a spoiled child when we ask for accommodations.  This is something very different. This is autism.

 Whatever is going on in that tangled up web of neurotransmitters in his brain, I don’t know. I’m always trying to learn from it. I manage to stay pretty calm and accept it. It’s very hard. I’m trying my best to express what it’s like, for people who don’t know. I guess I’d like the world to have a little more empathy for us autism parents.

 We autism parents know we deserve a pat on the back. This is parenting on steroids. We didn’t sign up for this. We didn’t have any clue life would take us on this wild ride, but here we are. They say special needs parents may suffer from memory loss. You think? My mind is usually on about 10 things at once. We may as well embrace it. It feels like a never ending marathon, raising the eternal toddler. Life will never be boring for us.

 I think of that mom on the United flight. She was trying her best to keep a situation from “going there”. Some point the finger - “Why didn’t she bring hot food? Why didn’t she feed her before? She should have done this, she shouldn’t have said that.” Yeah, yeah, yeah - whatever. “Do you think she didn’t think of that?” We can only control so much. We’re not perfect either. We’re doing the best we can. Also, we’re tired, frustrated, bewildered, barabajagal!




Alison Peterson
Alison Peterson

Author



5 Responses

Yoko AIHARA
Yoko AIHARA

March 01, 2016

Dear Ms. Peterson,

I’m impressed that you are such an author. Words, languages attract me.

My husband is not good at writing Japanese. He was raised up in Japan, Papua New Guinea and US. 40 years ago, he and his family left Japan when he was 8 yrs old. Sisters were 6 and 5. It was for parents’ mission.

His mother tongue development seems stopped then. I’m worried about that his English is immature and unskilled too.
For me, he is still struggling in the gap in languages, cultures and nations.

It is one of the problems may happen to kids with move overseas.

Fortunately, my kids are raising up in almost one place. If we were in the circumstance with move and change, I would be very careful for kids hearts’ peace.

Yoko AIHARA

Caryn Valeu
Caryn Valeu

August 24, 2015

Have ever tried giving him a time count down so he know it is time to stop? We give kids a 5 minute count down and at every minute tell them ok you have 4 for minutes and then 3 more minutes so on… Then with the things he likes, tell he will lose time on them..When we took the item away completely it upset the child more because they don’t have concept of time, to them 1 hour is like a whole day. If he complete a task ( put his toys away or something you ask him to do) he will have his time back. I work with many diffrent kinds of children from behavior problems to autism.. Each child is unique. Not everything works prefectly but with time, everything does come around. Also as he gets older he will learn to work with everyone and he will be his true self. : )

julie avila
julie avila

June 24, 2015

I worked many years in a California State “institute” I saw everything from profound mental retardation, to dual diagnosis . The saddest for me was working in a “youth” ward for residence under the age of 21. My God, this was already the early 1990’s and parents would still give their child over to the state. I had one autistic boy that I loved dearly. His medical condition was such that he was wheelchair bound and I suctioned his trach twice a shift. However, He understood damn near everything I said to him with appropriate responses. I give you praise for being steadfast and proactive parents.

Stephanie Stewart-Morgan
Stephanie Stewart-Morgan

June 08, 2015

Same, Lisa. We always call them fits too, for the lack of a better word. We should maybe take note of Alison’s post and think of our own word. But how do you describe the indescribable?
Children with autism (and adults, let’s be honest) thrive on predictability. Even the slightest deviation from the norm is enough to send both mine off the Richter scale. I long ago learned to block out the public stares and disapproval. You just have to stay in the zone and do what’s best for the kids.

Lisa Mclendon
Lisa Mclendon

May 31, 2015

Omg bells just went off.you just described my son after one of his fits for lack of a better term….he is doing better but changes or unexpected dissapoinments are ROUGH

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