How to deal with repetitive play and stimming?

[expat-mama]

I've gotten different advice about this.

My son seems to cycle back and forth into and out of periods where his repetitive play is more and less. When it is in the more cycle, he could happily sit for hours and hours at a time doing things like pulling a toy in and out of a box/container of some type so that some of it is peeking out, then putting it back in etc. He loves this kind of peek-a-boo activity and will find ways to do it with anything, anywhere, over and over. There are certain types of toys and things too that he will play with in odd ways- scarves, long pieces of string, anything long and with a "tail" on it- he likes waving them around, hiding them under things, behind his back, behind things. 

I do Floor Time with my son and try to use his repetitive play as a jumping off point for lots of other things and it works ok unless he is in what I call (with affection, truly not meaning to offend anyone) his "spazzy" end of a cycle when this is all he wants to do all the time. And obviously I have other things to do around home so cannot be engaged in Floor Time with him during all his waking hours, though I try my best. 

The "professional" advice I've been given about this falls into two camps. The first is that, while he doing this type of repetitive play he is missing out on more valuable developmental types of play, so it should be discouraged and avoided and other types of play encouraged as much as possible.

The second is that this is how DS blows off steam, this is his comfort zone and that when he is tending to do these things is when he is most in need of calming himself. So not to worry about it too much if I can't get him to play in other ways or to disengage from this kind of behaviour.

I tend to feel really guilty when I'm busy and can't get down on the floor with DS to get him out of his repetitive play. This is one of the problems I'm having lately. I guess it also makes me feel sad and depressed sometimes when DS does this because it is a time when it is really obvious that DS has ASD and doesn't play normally like other kids. 

DH says I stress too much about it and put too much pressure on myself about things like this. I wonder about how other moms deal with this aspect of behaviour? What advice were you given about it and what are your thoughts on what effect being left (sometimes) to (happily) engage in repetitive actions has on your child? How do you deal with the sadness of watching your little one engage in such obviously atypical behaviour? 

Does your child also seem to go through cycles where his ASD behaviours are so obviously more and less?

[livinglife]

I know he's on a gf/cf soy free diet.  That's marvelous!  It is so much commitment to keep to this diet, I know!  I know you've wondered in the past why it hasn't seemed to reduce his symptoms even further then it has, although it has helped enormously. 

One thing I was searching my memory for for when my DS was your little guys age, (I can't believe that was nine years ago...I'm old!!)  was, what "else" I used to do for him in addition to dietary changes and his ot/speech therapy.

I did some research at the time on how fungal and yeast overgrowths in various parts of the body (digestive system) contribute to metabolic problems and food intolerances.  I also at the time always hoped that my child would eat a "normal" diet at some point.  (now I just don't care anymore if he ever does as long as he's healthy)

One thing that is hypothesized about the "spazzy" stuff you're talking about is that during a die off of fungus/yeast they let off a certain amount of toxin that cause neurological and sensory nervous system symptoms...spacey, tired, foggy, overly silly behavior. 

This would make sense, that when you change the diet there would be yeast die off.  Also, the improvements in behavior as a result of dietary changes would highlight your next steps which may be to improve his intestinal flora. 

REALLY good probiotic, with live, cultures in the billions, fermented foods, and herbal tinctures that help to kill fungus/yeast, I think would really help your child's ability to connect to play without you present to structure it.  Just a hunch.  I used to give my son Pau D'arco routinely at that age which you can buy on-line from gaia or herbal medicinals.  Cilantro which you can buy in the tincture form from herbal medicinals, scoops up heavy metals in the blood stream which are often hiding in tissue systems with fungus/yeast, and are released into the blood with the die off, will help the body further.  Using greens like chorella, help the body to buffer toxins out through elimination otherwise the body may restore heavy metals again allowing yeast and fungus to grow starting the whole process anew.  You need to investigate how to help his body detox pathways along every route to elimination.  There is a great deal on-line about this and you can do your own research for good information.

I get your emotions about your son and the guilt you feel. 

I decided a few years ago that i'd focus on what I could learn to do to help in all ways, biomedically, homeopathically, etc. to help him be a healthy person in today's world.  While what you describe are ASD symptoms, these symptoms can be ameliorated as you dig deeper to help his body manage the toxic world that we live in, and it is toxic, certainly....our children are the canaries in the coal mine.  When you are able to help him continuously detoxify you will see fewer ASD syptoms or what you see will be less extreme.

I see that you love him, are devoted to helping him and please don't waste your beautiful precious energy doubting yourself with guilt that you should play with him more.  It seems that you do quite a lot of playing with him and MUCH MUCH more and for that you should feel incredibly proud of your devotion and ability to care for him.  So, I guess what I'm saying is, I agree with your husband.  Don't stress out that you aren't playing with him all the time.  You do so much.  Focus on what you do and the love you feel for him.

Edited by livinglife - 3/3/13 at 7:21am

[fizgig]

Hi expat, we haven't dealt with this issue with our DS but a lot of the kids we play with regularly do stim and I've had a lot of conversations with their parents about the exact same dilemma. 

It seems to me like this is a really hard issue, because it does seem to me that stimming can interfere with other kinds of learning and can cause problems socially if it is too disruptive or too off-putting for others.  That said, this post was written by an adult with ASD about her experience with people stopping her from stimming and it is incredibly powerful.

http://juststimming.wordpress.com/2011/10/05/quiet-hands/
 

I know it isn't exactly the same, but I actually had a number of stims when I was little and they were really essential for me.  I used to spin and I "fiddle" (especially with a blanket that I run through my fingers).  My stims were fairly socially innocuous but they really, really helped me feel centered and focused.  Even now as an adult I can't really read or focus on anything complex without something in my hand to fiddle with.  From discussions with adults with ASD they also mention that, often doing their stims were helping them concentrate so, while it might look like they aren't paying attention, it was actually the way they learned best. 

So, no easy answers but I do think listening to adults with ASD is a great way to get a sense of how and when to intervene and when to let it go.  Oh, and I also know a number of kids who have simply grown out of their stims :)

[Linda on the move]

Good stuff has already been said and I LOVE that link! 

My DD is old enough to talk about stimming now. We've worked to find stims that work for her and are more socially acceptable. We've also found that the better her sensory issues are being accommodated for and the less stress in her life, the less her needs for stims.

None the less, if she needs to stim, she needs to stim. As long as she isn't doing it a way that hurts herself (she's been known to bang her head into wall/table/whatever repeatedly) then its OK.

Some other thoughts....

Originally Posted by expat-mama 

The "professional" advice I've been given about this falls into two camps. The first is that, while he doing this type of repetitive play he is missing out on more valuable developmental types of play, so it should be discouraged and avoided and other types of play encouraged as much as possible.

The second is that this is how DS blows off steam, this is his comfort zone and that when he is tending to do these things is when he is most in need of calming himself. So not to worry about it too much if I can't get him to play in other ways or to disengage from this kind of behaviour.

I don't think these are mutually exclusive. If you are able to use a floortime approach and gently pivot him to something else, that's GREAT! On the other hand, I think that when he is difficult/impossible to redirect, he really needs it. This isn't a black a white issue. Just because it is helpful to sometimes help him find a path out of the stim, it doesn't mean that EVERY instance NEEDS to be ended.

My DD NEEEDS more down time and quiet time than most people, trying to take it all away would just be mean. We all have things we do to chill out that we don't really get much from except relaxation.

I tend to feel really guilty when I'm busy and can't get down on the floor with DS to get him out of his repetitive play. This is one of the problems I'm having lately. I guess it also makes me feel sad and depressed sometimes when DS does this because it is a time when it is really obvious that DS has ASD and doesn't play normally like other kids. 

Mommy guilt is a problem for many, many moms, but we moms of special needs kids tend to get an extra dose of it. No, of course you can't always get him out of it, and that's OK. Not every minute has to be about maximizing development. There is a middle path of working with our kids and helping them develop without driving our selves completely crazy, trusting that our best is good enough and knowing that things will be OK.

The other part -- the feeling sad and depressed is really a separate issue. May be learning more about what he is experiencing will help you frame how you see it when he is just being himself. Also reminding yourself that the stim doesn't really mean anything about how he is doing or what he is thinking or what he understands about his life. It just is.

When I was looking at schools for my DD, I walked into a class discussion where a teen boy was flapping his hands and talking away and no one seemed bothered by that and I thought, "A kindred soul!"  I felt so much better about the school for my DD because it was like a sign. Have you ever seen Bill Gates talk? He moves his hands in a mildly hand/flappy way when he explains things. Part of this may be about you making more peace with what is going on for him right now. Is he happy? Does he seem calm? If so, that's really enough for right now.

DH says I stress too much about it and put too much pressure on myself about things like this.

I'm sure your DH is right, but I also suspect that telling you that won't do anything to change the way you feel and the pressure you are putting on yourself.

Does your child also seem to go through cycles where his ASD behaviours are so obviously more and less?

yes -- very much so. One theory of child development says that children go through periods of equilibrium and then disequilibrium as they go through a developmental leap, and then to a new period of equilibrium.

My personal theory is that for kids on the spectrum, these cycles of seeming more ASD and then less are related to those periods of equilibrium/disequilibrium that all kids go through.

If you take "disequilibrium" and add a little ASD/sensory issues/anxiety to it, you get a very quirky and disconcerting DISEQUILIBRIUM . Anyway, that's how it has seemed for my DD.  

Currently, when my DD needs to calm down, she wears noise cancelling headphones and walks in a circle in our backyard. We moved in November and it was a HUGE deal because it was a new yard and new circle and it took her a few weeks to make her peace and be able to calm herself by doing the exact same thing in a new place. And she's doing just awesome right now with life. But her noise cancelling headphones and being allowed to walk in a circle are a very important part of her doing awesome.

[sbgrace]

I just wanted to say "ya, all that" in regards to what LindaontheMove wrote.

I'll add that my spectrum son does certainly go through times when he has more obvious behaviors--the stimmy times particularly. I haven't pinpointed what those periods are but often he seems to come out into a bit of a leap developmentally. Or maybe it's just a contrast from the more obvious time! When he was younger he did that because he was sick (undiagosed metabolic condition) but he had other signs and did those things much of his time. He loved to line up the edge of something to another something and watch it pass...over and over. For him it was connected to food (metabolic though..fat in his case) so it is true that kids can be more stimmy when something is going on physically as well as when things are happening developmentally.

It's really hard for me, even now, when it hits me how different my son is. He's 9 so I would have expected myself to get used to it but I really haven't. I do think, for some of us anyway, it's just part of it. I do think there were times, especially early in the diagnosis, when I was also depressed and that's a different thing. I actually did take medication for a while after his dx. and it helped me. I do the mommy guilt thing too....and I say sincerely you're doing great even though, I know, it probably won't help you feel better. The emotions you expressed so well in your post are experienced by so many of us. You really aren't alone. He's fortunate to have you for his mommy.

[expat-mama]

This has given me lots to think about. I'll probably be back here as I get my thoughts together.

 One thing I'm trying to figure out is the distinction between stimming and repetitive and restricted play. For instance, earlier we met a playgroup at a park nearby and my son started off running and climbing with the other kids then picked up a stick and spent the next hour sticking it in and out of bushes (his peek-a-boo thing he always does) and waving it around (the description of this sounds like it could considered "normal" play, I've seen kids play with sticks- but it wasn't like that). He would get very upset when I tried to distract him from the stick and do something else, so I just let him at it. Is this stimming or repetitive play? 

I've read that blog post that was linked here and the last thing I want to do is bring that kind of stress and unhappiness to my son. 

Another thing that I tend to feel guilt about is the frustration I can't help feel when I go through a lot of effort to take my son out to activities (like above mentioned playgroup) and gymnastics, swimming, rhythm & rhyme group etc etc etc to give him opportunities to be social and be around other kids and introduce him to new things and he'd often rather ignore me and everyone, ignore whatever is going on and play with a piece of string or whatever. Same when I try my best to engage him at home.

I KNOW, it's not his fault but sometimes I just feel like he'd get the same experience if I let him play with the damn string at home and then I could actually do some of what I needed to get done in this time. I get frustrated with him and then guilty for feeling that way. And sometimes I'm just at a loss for what the hell to do with him. It would be way easier to let him play with a string or stick things in and out of boxes all day. Obviously I would never do that.

This is all kind of stream of emotional thoughts right now... I'm pretty pregnant right now and having a bit of a hard time lately. 

It is eternally helpful to come here and have this board as a resource.

[fizgig]

Expat, I totally 100% hear you about the guilt and frustration.  What you're feeling is VERY normal for parents of special needs kids.  Our DS doesn't have stimming issues but his language is almost 2 years behind now and I constantly feel like I should be engaging him, working on language, etc.  Whenever he is doing something that I know isn't "productive" (iPad and even some video) I feel sooooo much guilt, like he might be further along if I were just more focused on him. 

Even when I give him 95% of my time, I feel guilty.  But, I've come to believe that I can't and shouldn't feel like I am always on and have to be his live-in therapist day in and day out.  It wasn't good for our relationship and I think it was actually starting to cause problems.  Especially when I went into "work on language" mode - he could tell and I think he was getting a very sad message from me (I'm not good enough the way I am, I have to fix myself for mommy to be happy).  I'm not saying you are doing that, but I just think feeling like you should always be "working on" something just can't be healthy. 

Of course I say that and STILL feel guilty when I'm not encouraging productive play.  I know its not possible for everyone, but one thing I've done that has made a huge difference for everyone, has been to hire a floortime therapist to come and work with DS 4-5 hours a week.  He gets great, language rich productive play time and I get to do things I want/need to while they play.  DS loves it and the therapist has really helped him move forward with skills that I would never have thought to push him to work on.  It costs quite a bit (though our insurance is covering a portion of it) but it has made a difference for us in every way! 

[sbgrace]

I come from a Relationship Development Intervention (RDI) type approach initially. It's developmental, though, like your floortime. The creator believes that typical development starts with parent/child interaction, then child/sibling or child/one other child, then to a larger group of playmates. In his view our kids would develop similarly. They need to master the parent/child interaction, then to the dyad (2), and on to groups. So I believe he would say that your child, developmentally, is just not ready for group interaction. Beyond that, ASD kids don't tend to naturally pick up things from social situations anyway. They have to be led to discover those things directly. As far as activities my inclination would be to do what he and/or you find enjoyable and drop the rest. But I'm sure opinions differ on that, though, and I could be way wrong!

Yes, that sounds like stimming to me. Is it possible your son is overwhelmed by the whole experience and is retreating to what is safe and comforting for him? Spectrum kids, and adults for that matter, stim. Hey, I think non-spectrum people do too if you look broadly. I wouldn't expect to eliminate it.

[baltmom]

Expat, I think I said in another thread how similar our boys sound. Now I’m saying how similar you and I sound! The same worries and fears, questions, what-ifs, and guilt. I so wish we lived nearby so we could go to a playground together and feel not so alone J

One small question and one small thing to add –

When you use his repetitive play as a jumping-off point for more engaged and/or purposeful play as you described, do you consciously try to continue to provide the same input that what he's doing is helping him achieve? In other words, if I’m learning correctly from our OT, it sounds like some of his car peek-a-boo and scarf-waving may be giving him the changes in visual pattern that his visual system is looking for (we have some similar behaviors). You may already do all of this, but some other activities that may provide the same input but also provide some variety could be blowing bubbles and tracking and popping them (or using the cars to pop them), chasing the light from a flashlight, keeping a balloon in the air, building structures for the cars to go in and out of.

The one thing I am slowly learning re: the guilt is that the best thing for his development is not necessarily me focusing on his development 24/7. Just like any other kid, he really does need me at my best, which means I need to make it a priority to keep my own cup filled so I can keep his filled. If just letting him do his thing for a little while, or separate activities, is what I need to be fully present when we’re together, then that’s going to be better for him in the long run, and a healthier dynamic for us in the long run.

Thanks for posting this – you’ve articulated many of my concerns far more clearly than I ever have.

[EarthRootsStarSoul]

I have just a small idea you could try.  Since he likes putting things in and out of boxes repeatedly, rather than you trying to get him to do something completely different and 'harshing his mellow' so to speak, use what he's already doing and elaborate on it.  Make up a narrative about the toy going home and coming out to play.  Give it a name and a personality, and some reason he/she is coming and going. 

[expat-mama]

He does sometimes do this kind of repetitive play imaginatively. When he is popping one of his little animals or dolls in and out of a box or something he will often say stuff like "he's jumping out!" or "there he is" and other statements like this kind of narrating the play. It does seem like his mind is working when he is doing these things... and like I said, he is so happy doing it and he thinks it's really fun/funny.

I had an idea last night that I could make boxes that are decorated with scenes for his animals and dolls- like one with trees, one with an ocean scene, one with a house etc...then maybe that would expand on the way he can do this kind of play more imaginatively!

Hmm... if only I had the energy of a toddler to do these things...and the time.  I think I'll have to try this out though.

Edited by expat-mama - 3/14/13 at 11:17pm

[expat-mama]

Originally Posted by baltmom 

Expat, I think I said in another thread how similar our boys sound. Now I’m saying how similar you and I sound! The same worries and fears, questions, what-ifs, and guilt. I so wish we lived nearby so we could go to a playground together and feel not so alone J

Me too!  It's nice to find you here.