New Dx, young kids, chaos, etc.

Post Reply New Topic

Hi all,
I'm new. My 6 year old son was just diagnosed with AS last week and I'm trying to wade through how to be the best mother I can be to him. I'm reading books and doing online research, but there are a couple areas that I would really like to be more knowledgeable about quickly (wishful thinking?).

The first is that I have been reading a lot about how an ordered, calm environment is helpful for my son (and likely husband) with AS, but we have three rowdy young boys (my AS son is fine with noise and a mess if he makes it) who create chaos constantly. This is probably just an area that requires diligent rule-setting and enforcement with all my kids, but I would love to be pointed in the right direction if there is any helpful advice to be had.

The other big stumbling block that I'm currently aware of is my difficulty in switching my mindset from thinking that I just don't discipline my AS son well enough, or consistently enough, or that I wasn't a good enough mom - my line of thought before the diagnosis when I thought I was dealing with an intentionally strong willed, aggressive, sometimes defiant son - to looking at his behaviors as manifestations of a neurological difference that require more patience, instruction and maybe no - or a different kind - of discipline. I feel like I need to help him figure out a better way to soothe when he's overstimulated/ angry/ disappointed - than to be destructive for example. But I don't suddenly know what that better way is just because he has a new diagnosis. I feel like I'm beginning to understand motivations of behaviors, but don't yet know what to do about them. For example, I've read that it is NOT adviseable to promote venting on a punching bag because it doesn't channel emotion in a direction that is helpful in "real life" - and I have seen other sources recommend promoting venting emotion on a punching bag.

I feel like the stakes are high in figuring this out quickly and helping my son well because my husband and I both see that my husband seems to have AS to some degree, and he spent all of his teen years coping with pot. I want to be able to help our son cope and thrive in a better way.

This is probably a typical new Dx post, so if you don't have any advise but just want to pat me on the head and say, "hush, hush, it'll be okay," that's fine with me too.

My best advise is to understand this he is not willful and defiant because he want to be, but because he struggles with change and sensory issues.

example:
I am on the spectrum and my mom always thought that because I did not hop to it everytime she told me to do something, that I was being defiant. I tried telling her that I dont do it to defy her but changing activities is very stressful for me. I have to take a break inbetween activity changes or I will be overwhelmed. She told me I was full of bull**** and I was making excuses for not getting done what needs to be done. But once I got on this site, I found what I desribed has a name and is common with those with ASD's. It is called autistic inertia which means that we are very hard to change course of action or inaction which doing so often leads to being overwhelmed. Now she has gotten better to listening to me when I say something bothers me. Of course when I was younger, I would not have been in touch with myself enough to know why I felt overwhelmed at being whiplashed between acticties and I would have just thrown a fit, sceamed or shutdown. His actions are him trying to communicate to you that he is overwhelmed or otherwise hurts. It is your job to find out why by asking very dirrect questions like a detective.

I remember when I was sexually abused by by babysitters sons and the doctor said I was acting like a child who had been sexually abused. My level of functiong when really down and I was really regressing fast. My parrents asked me if any adults touched me inappropreatly, I said no. They never asked me if another child did, so I never told them untill I was much older. I could have gotten help had they asked me if a kid did, but in my literal mind. I thought that only adults doing that to me was wrong.

so be very thorough and specific

welcome to wrongplanet, btw

Hi starlo! Welcome. I'm new here myself (here is my own first 'help!' post after my nearly 3.5yr old was diagnosed ASD: http://www.wrongplanet.net/postt165398.html )

Personally I have found that a lot of what I read in the ASD literature doesn't really apply to my son as he is at the moment - e.g. he is not rigid in his thinking, is not particularly wedded to routines or bothered if we change things around, or bothered by busy noisy places. So I just acknowledge that those are common issues for ASD kids, which is useful to know in case my son starts to show some of those issues later on, and skip on to the literature that deals with traits he does show, e.g. being destructive/noisy, not seeming to listen at times, not being motivated by the same things as other kids (e.g. time outs don't work, nor do sticker charts).

What I am trying to say is, don't stress about turning your household into an oasis of calm orderliness just because the books say that most ASD kids would benefit from that. Go with your instincts. Sit back for a few days and watch your son - is his behaviour worse in any way on noisy/inside days, does he get at all upset when routines are suddenly changed? If he doesn't care about routines and noise, then you shouldn't either.

You also might want to explore his possible sensory issues - e.g. my son cares not at all about noise, but is very touch focussed - loves cuddles, stroking, often plays lying on the floor. That gives me an instant way to calm him down when upset (and now I know that all those people who told me that when I cuddled him during a tantrum I was rewarding the behaviour were just wrong!). My son also behaves better on days when he can get a good dose of time in the swing (so he has vestibular issues). Nothing I didn't know already, but now we have the dx, I can make sure that other people know he NEEDS to swing and move all the time, and isn't being naughty when he won't sit still in a chair for 5 minutes. So understanding the ASD has helped me understand my son's behaviours a lot. I now see that a lot of times we thought we had a compliance issue, we really had an anxiety issue, which leads to a completely different way of dealing with the situation. And I am still just at the beginning of all this, like you. The more you understand what is happening in your son's head, the more you will be able to avoid situations that get him worked up, aggressive, angry, confused etc.

Have you made contact with any other parents locally? You will probably find there is a support group. In NZ there is training course for parents run by the govt, free, to specifically educate us on ASD (we're waiting for ours to start). We also have a national autism group that provides great resources (e.g. we have some DVDs from their library on reading emotions, toilet training, that sort of thing) and advice (e.g. I already know which local school sends the most teachers to the ASD training courses). The more I talk to other parents who are a bit further down the road than I am, the better I feel about my son's future.

With regard to your son's future - I can bet that he will not spend his teen years coping with pot. Why not? Because he has received a dx at age 6, giving you years and years in which you can refine your understanding of any issues he has, and work on whatever therapy or teaching he needs to learn to cope. And because he has a mother who cares enough to want to figure all this out for him! Lucky boy

Hi, Starlo - wow, you are so much farther ahead of this than I was when we first got a diagnosis!

As for the anger/hitting: I know this sounds counter-intuitive, but what works for my son is to allow him to play in isolation for a moment. Something like a time-out - we send him to his room and ignore whatever he does in there (unless we are concerned he will harm himself.) After he is calm, we discuss what might be done differently to prevent him from melting down in the first place.

Another issue that we're still struggling with: too many words. Our current solution probably won't work until your son is older (and we're not yet sure whether or not it will work for us) but we set up an insulated 3-way Twitter account for my son, my husband, and myself. The idea is that we are limited to 140 characters to give him high-stakes instructions; it really makes you think about being succinct and getting the important information out.

At any rate, there's all kinds of resources here; see the stickies at the top of the forum. Also, I've been trying to create an index by topic here: http://www.wrongplanet.net/postt166142.html

On momsparky's line of thinking, I too have been really working on the succinct communication with our 5 yo ASD son. Someone here a couple weeks ago described it as the "air traffic controller" method of commmunication. Thanks to whoever that was because it really stuck with me and I have been practicing it as diligently as I can. What that means is you state plainly with no emotion exaclty what the child should do, like an air traffic controller talking to a pilot "Delta 27, proceed to runway 3..." Air traffic controllers don't typically lose their tempers with the pilots. They speak clearly and politely and give specific directions with no additional chit chat or extraneous words.

For us it sounds like this; instead of me saying "Would you please get dressed now, C?" I say in my most matter of fact and polite tone, "C, take off your pajamas now please". "C, put on your underwear now please", "C, put on your shorts", etc. Preceding any direction with the child's name is good to help alert him to the fact that you are talking to him and not someone else.

I understand the sense of urgency you feel but please cut yourself some slack. You are doing fine by reaching out and learning what you can. It just takes time though. There are so many sources of information and what actually applies to your individual child is just a small portion of that. Take your time to closely observe him and do your best to maintain your own equanimity.

I should add: we tried the "punching bag" thing a number of different ways a number of times. In my son's case, not only did it legitimize hitting as a way to deal with anger (in the heat of the moment, he isn't really aware of what he's hitting,) it also fanned the flames of his anger, making it worse. We found having him be alone for a while, allowing him to play (sometimes he'd act out the situation with action figures) or draw (sometimes the drawings were enlightening, too) or do something quietly until he was able to come out and talk rationally.

I suppose this system might work for a different child, but to a child like mine who struggles to apply rules and expectations differently from inanimate objects to animals to people, I found it made things worse. We also have no luck with vigorous exercise during anger (like jumping jacks,) nor with sitting calmly and deep breathing (these are things that have been shown to work for other kids on the spectrum which are worth trying.) This is just to illustrate how individual each child is: our son needs to distract himself with something creative in order to calm down. Unfortunately, it's going to take some trial and error to figure out what your son needs.

Thanks all, I appreciate the responses and input.

Lately I've been struggling to figure out how to help my son deal with disappointment in a less destructive way, and Jojobean, something you said made me wonder if you have advice. He does have quite a bit of trouble changing activities, so he probably is dealing with autistic inertia also - I just don't know what to do to make it easier for him and would love suggestions. I give him warnings (we'll do this activity for an hour, 15 more minutes, 5 more minutes, 2 more minutes, etc) and set timers, but it doesn't seem to make it easier to stop the enjoyable thing (playing video games, playing with a friend's pet).

For example, we just got home from vacation. While we were gone, one day we were spending the morning at the lake. He was in and out of the water, exploring, and seemed generally at peace, which I love. Some friends brought their pet rabbit out of their cabin and let it jump around. The kids chased it and took turns holding it for a while, and when it was time for the family that owned the rabbit to leave, the mom said they had a few more minutes and my son immediately got angry. He went over to a bush and started ripping at branches, and was moving on to another before I caught up with him. He yelled out angry threats to all of us, and when I caught him and held him close he just crumpled and cried and expressed that he was sad the rabbit had to go, then yelled, then continued crying, yelled a little more, and his anger eventually faded. This seems like meltdown behavior, but it came on so suddenly I don't know what I could have done to help him soothe or de-escalate - it just seemed like he went from peace and happiness to yelling the worst things he could think of and trying to destroy things. When this happens I try to help him put words to feelings and encourage him to use his words first next time, and I discipline him if he tries to damage something, hurt or threaten someone, but I feel generally clueless both as to how to prevent these reactions, and deal with them once they happen.

Oh, and to those who suggested sensory issues may be at play, I should have added that he has been diagnosed with SPD. And momsparky, thank you so much for the index!

I'm dealing with a lot of the same issues with my dd, who has just been dx a couple of days before turning 12. So we have years of discipline to wonder about. On top of it, we are pretty-laid back as parents, our house is chaotic (dd is youngest of 7, some with undx ADHD) and we practised attachment parenting. I realize now that she probably needed a bit more structure. I agree about less talking. We're finding it helpful *not* to engage with her when she is arguing or tantruming (repeat each instruction only once and then wait) and also to make our instructions more clear and neutral. On the other hand, we're talking far more about positive things and I'm reacting far less to "problem" behaviours now that I know what's causing them. Maybe she's more self-aware and able to talk about feelings is in part because of the kind of parenting we did. In any case, my suggestion would be to look for the positive and really build on that. Have fun together, show interest in every little progress or act of kindness, be compassionate and forgiving about mistakes to encourage practising good behaviour. J.