Struggle

For all the positive posts I’ve written lately I have just as many, more in fact, of the negative variety (though unwritten…until now.)  Lately I feel I am in over my head with this child.  The waves are crashing over me, water has rushed up my nose, and I’m struggling to get some air.  The behavior, oh the behavior.  We are struggling with the Roc.  We have been struggling with the Roc for some time.

When I went on a trip in September with my good friend Christa we talked about discipline.  Her son P is the same age as the Roc, he also has autism, and she can give him “the look.”  You know “the look” some parents can give their children when they are doing something wrong, and they stop immediately.  “The look” does not work with the Roc.  Christa told me how they went through a period of time which she referred to as “bringing down the hammer.”  Every time P broke the rules he went to his room, no threats and no bribes.  She said that it wasn’t pretty and he would tantrum for long periods of time while in his room.  They had to remove almost everything from his room to keep him and his things safe.  When they were out in public and he started up they would leave, when they got home they would tell him that he would be losing a certain privilege which would cause him to tantrum and be sent to his room, but at least they were in the safety of their home.  Over time (she guessed about 4 months) he started to change and was having to go to his room less and less.  And now they have a child who, for the most part, listens to his parents.

I do not.

Lately the Roc has been so demanding, everything has been such a big deal, or I should say that the littlest of things are the biggest deal.  He is bossy and tries to control everyone and every situation in the house.  Strange stuff is popping up lately like his sudden issue with all things circular.  Container lids have to be hidden, he doesn’t like to see the lids of our pots, he now refuses to eat off the blue plates because they have an indented circle inside, he doesn’t like my camera because the lens is circular.  It’s maddening.  It’s incredibly frustrating.  I feel as though I have no control over this child, and the reality is that I don’t.

I have no control over my child. What is this going to look like in 2 years?  4 years?  The teenage years?  GAH.  Something has to change.  I need to get the upper hand here.

We’ve been trying the no threats/no bribes, go to your room whenever you break a rule tactic, and it had an effect at first.  He was shocked that we didn’t give any warnings, he flailed and thrashed and screamed away in his almost empty room, but then things changed.  He usually gets upset the first time he has to go to his room and then the rest of the day it becomes a game.  He runs away from us laughing when we say go to your room, he quiets down immediately as soon as we put him there, he doesn’t really seem to mind anymore, and it feels like he is playing us again.  Or maybe he is just outlasting us.

He does tend to outlast us.  We had an awesome time hiking in Pennsylvania last weekend.  For the most part the Roc did well.  He had his moments though, and they were not fun, for any of us.  On the ride home he broke apart because GC didn’t answer a question the right way.  He didn’t say certain words in a certain order.  The Roc SCREAMED for at least 20 minutes.  20 minutes of screaming about what Daddy should have said while driving down the Blue Route, through construction, with lots of traffic.  My ears hurt just writing about the length of screaming and remembering how ear piercing it was.  We tried to ignore him, we lasted for a long while, but we were tired and hungry and so sick of dealing with these wild swings in behavior that we snapped.  He out screamed us, and we both screamed back.  Our ropes snapped.

Yesterday morning I had a similar experience and didn’t handle myself as best I could.  The Roc and I were playing upstairs together and when it was time to go get ready for the bus all hell broke loose.  I didn’t go down the stairs at the appropriate pace while holding his hand, and he went berserk, screaming for me to try again.  He wasted all his morning exercise time screaming at me to go back up the stairs.  I turned on the silent treatment, ignored him and wouldn’t engage in a fight, trying to see if that would make him calm down.  It didn’t.  He escalated to roughing up the chairs, throwing things off the table, throwing things towards me, swatting at me, spitting, and then spitting at me.  As I felt the spittle hit my face I lost it.  I clapped my hand over his mouth and with the devil in my voice I told him that he would “NEVER DO THAT AGAIN!”  He kept screaming and thrashing around the entry way.  We went outside to wait for the bus, he started running away laughing so I turned to go back in the house causing him to screech for me to stay outside.  We waited in the doorway and as soon as the bus came I pulled him out and down to the curb, where he lost it.  Screaming and crying saying he didn’t want the bus to be there, he wasn’t going to get on, he wasn’t going to make a good choice (I’ve been talking a lot about choices lately.)  I tilted his face upwards, leaned down, and said that he would never, ever, ever behave that way again.  That he would never hit me, he would never, ever spit at me, or behave so disrespectfully towards me again.  He was so visibly upset.  I was shaking with exhaustion and anger and it wasn’t even 9 am.  We walked toward the bus and he started to ramp up again.  I stopped him at the bottom of the stairs and asked him if he wanted to tell the bus driver about his morning, about how he behaved.  He looked afraid and the bus driver looked at me like I was crazy and a horrible mother.  As my blood boiled in my veins I felt like the worst mother.

Which I feel on so many occasions throughout each and every day.  What am I doing wrong?  How do I discipline this child?  I talked to the Roc’s doctor on Monday morning (while the Roc bounced around the room, swinging his arms, throwing his jacket, pulling on me, snorting in my face – seriously, he was snorting in my face.  Try having a coherent conversation while all of that is going on.) and she did suggest trying to find a behavioral therapist and also referred me to a neurologist that she really likes, she said he has wonderful bedside manner – how often do you get that in a doctor?

I also talked to a mother of a 10 year old with autism at soccer two weekends ago.  She and her husband said that it took a lot of time and patience on their part, that they really just repeated everything over and over and over again, literally drilling the rules into their son.  She said they talked a lot of things through with him, validating his feelings and giving him alternatives to his outbursts, and over time they could see him shifting, choosing the alternative to blowing up.  She also mentioned that they charted his behavior throughout the day so he could see how he was doing, and that if he did well he was able to earn TV time, which was his greatest reward.  She suggested I figure out what the Roc’s greatest reward would be and have him work towards that.  And right there we are stumped.  Because we don’t know how to motivate him.  We tried taking toys away, having him work toward a bath, or a special dessert, or an outing, but nothing seemed to really have an impact.

So please, tell me, how in the world do you discipline your child with autism?  What do you do when they talk back, get aggressive, flip out over nonsense, scream at you, kick at the dog, spit in your house and then spit at you, are bossy and controlling?  How do you motivate them to follow the rules of the house?  To respect you?  What do you do?  Please tell me what do you do?

And please, for the love of god, do not tell me try a sticker chart (as I’ve heard on numerous occasions from parents of typical kids, the Roc could care less about earning a STICKER) or suggest that I have him stand in the corner with his nose pressed against the wall (as my neighbor did after a particularly trying day.  She could hear the Roc tantruming through our shared wall…sigh.)

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11 thoughts on “Struggle

  1. Oh, sweetie! I can *feel* your pain, frustration, and exhaustion in each word. I don’t have a magic answer as we’re kind of approaching where you are now, I think. Not quite to this degree but I see glimpses and it’s not pretty.

    Lots comes to mind but I don’t want to hijack your comments so I’ll email you. Meanwhile, sending big hugs and thoughts of peace. And forgiveness of yourself. You are NOT a horrible mother; you are a wonderful mother who loves her son desperately and who is only human.

  2. First, we’ve been there. Sometimes we are even back there. I know exactly what you are going through and could have written those words myself when my son was 2, 3, 4, and 5. Maybe even 6 and 7.

    I think your doctor is right. You need a behavioral therapist. That said, it’s not going to be pretty. As I was told, “it gets worse before it gets better,” and that was exactly our experience. But it did get better. It did not, however, go away. And so at 9, we still have our moments.

    Aside from finding a good therapist for your son, you should try to find the moments for you. It’s such a long haul and so exhausting that you really do have to take care of yourself, too. I think the words of your friend on the soccer field–the one with a 10 year old–were dead on. We did all of that. Over and over.

    You are not alone, here. If you need anything or want to talk, email. Anytime.

  3. Something that struck me is that some of the Roc’s behaviors are things that I’m seeing in Sarah. I wonder if it’s so-called normal developmental phase to want everything to be a certain way and to demand that Mommy walk down the stairs a certain way (Sarah does that sometimes when she’s upset). She went through a phase of only wanting to eat on the striped plate and only wanting the yellow cup and bowl.

    I wonder if this phase is “normal” but Rocco is hitting it a couple of years later and it the intensity sounds stronger. And, of course, that doesn’t provide a solution for how to deal with it.

    One thought I have is can you enlist the Roc’s speech therapist at school to do some social stories and role playing with him to help him better learn how to express his anger and frustration? (Or whatever is the main thing you think that triggers his bossiness and controlling.) It was really hard for me to get time to do that with Charlotte and it doesn’t seem to be as effective coming from me as it is coming from her slp at school. She gave me the social story and some other sheets they worked on for expressing anger and Charlotte and I read them often. There was a big change in her behavior after her SLP worked on that with her, and it has lasted – as long as I keep reminding her of the good ways to express those feelings.

    All that being said, we are still struggling too and I’m considering finding a behaviorist to help us too.

    I know how hard it is, Kim, and I’m really sorry you are struggling so much. I know that blood-boiling feeling -it’s a miserable way to feel. And then I feel so guilty because I’ve let a 6 yr old make me so crazy.

  4. a behavior therapist who is well trained in ABA is a great start.

    we have found that consistency is absolutely everything. it’s hard – really hard – to stay the course, but it’s everything.

    in studying ABA, you quickly learn about the ‘extinction burst’ – it ain’t always easy to live through.

    the example i like is of a coke machine. let’s say you go to a vending machine every day and put in a dollar. every day you get a soda for the dollar. (just like say, every time you yell or act out, you get attention from an adult.)

    well, one day you go to the machine and put in your dollar and nothing happens. (in other words, mom finally says, ‘i’m not going to give you attention anymore for unexpected/ unacceptable behavior). so, what do you do? do you calmly walk away? likely not.

    more likely, you shake the machine – give it a little jiggle. (yell louder). if that doesn’t work, you shake it like you mean it (perhaps throwing things off a table, or swatting). if you’re still not getting your damn soda, you likely kick the machine (say spit or otherwise lash out) trying to get the result you had before.

    now, the worst part is this. if we break down (still using the example of attention seeking behavior that might mean yelling back or stopping what you’re doing to attend to him), what we’ve taught is that NOW in order to get the coke, he needs to not just put in a quarter, but kick the machine. so, the next time he’s looking to get you to stop everything and attend to him, he’s going straight to the escalation. it’s an evil cycle.

    i’d follow the advice to get an ABA therapist to the house. let them watch for a while and then help you put a plan together.

    you are NOT a bad mom. you are wonderful mom who is simply trying to figure out how to do all this in a world where the rules are topsy turvy. none of us do it without help. i spent six weeks with a BCBA learning one on one about ABA, then another 12 weeks with another one in a group. we ALL need help.

    stay strong and please, please know you are not alone in feeling like this. we’ve been there.

  5. We are having many of the same struggles…I’m trying desperately to learn the difference between bad behavior for bad behavior’s sake and an autistic freak out because of some trigger that he’s reacting to. Motivation works when we’re trying to get him C to do something (as in, eat something new), but it doesn’t work when we’re trying to get him to stop doing something. Often those “good choices” we want them to make are so hard for them to make in the heat of the moment.

    I have no great advice. We’ve tried the ignore/ABA approach, and even our ABA therapists have said it clearly doesn’t work with C. He does not learn from consequences – or, rather, the consequences don’t change the behavior. Even natural consequences don’t work. C has what William Stillman says is the hardest type of autistic personality to deal with – C blames everyone else for everything and does not see his role in ANYTHING. It’s very challenging.

    Wish I had some good advice. I’m hoping you’ll get some, so I can borrow it. 🙂

  6. It sounds like you are living at my house! I have zero good advice for you, but if you manage to find something that works please share it so that I can try it with Hannah too!
    Natalie

  7. Trust me, I wouldn’t dare suggest a sticker chart. If I hear that one more time…I can’t add any more than what’s been said here. Getting someone in the home is incredibly important – even if it’s just to have another eye on the situation. Some insurances will even cover home ABA or behavior therapy. When we had an OT in, she saw things in our house that were triggers that I didn’t even know. She also suggested more social stories and PECS cards around, even though my son is verbal, purely for the visual reminders during the day (bringing him back to the picture of what’s supposed to happen breaks the spiral, she said). she even suggested an “oops” card for when things don’t go as planned.
    We have yet to find a motivator that works in our house as well. Toys taken away mean nothing. The connection is missing for my son.
    You are not a bad mom – you are amazing and are doing amazing things in a challenging situation. We all have our moments when we hit our breaking point. We’re all here to help you through those points.

  8. So sorry I’m late to this post – the last few days have been pretty full for me. First of all, a big hug to you. I know this is so hard. Secondly, what to do? I like what the mom of the 10-year-old at the soccer field suggested, and what she said about all the repetition is dead-on. That’s one of the main things I’m still realizing 13 years post-diagnosis. Nigel still needs lots and lots of repetition. Years’ worth, in some instances. And I know how daunting that sounds – I’ve lived it for so long, and yes, it’s exhausting and frustrating. I think that because Nigel had three years of ABA-based therapy at a young age (because he was nonverbal), it really made a difference in his not needing to demand that things be done a certain way. After he started talking, he occasionally tried to tell me to do things a certain way, and most of the time I did not oblige. So we didn’t have as many issues over that sort of thing, but plenty for other reasons. When he was younger, his meltdowns were sensory-related, and when he got older, his meltdowns were related to not being able to regulate his emotions on his own. That’s when we sought the help of medication. Anyway, I think at this point I would try what Jess suggested – consulting a behavioral therapist, especially one who specializes in ABA. But it does take time – Nigel was in his 30-hour a week program for two years before he started to talk, for example. The Roc may respond quicker, of course. I also wanted to assure you that I have regrettably done my fair share of losing it in front of my kids, yelling, etc. I hate that at those moments I couldn’t hold it together and be an effective parent. You are definitely not alone in feeling this way! Sending love.

  9. Pingback: All The Good Stuff « The Roc Chronicles

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