Saturday, August 9, 2008


It's been a summer of contradictions.

Ben's social and language skills have taken off like gang busters to the point where it feels like he is actually having conversations with us at times. While he is still somewhat echolalic, it seems wholly intentional now: something he is choosing to do for fun and play, rather than something that he does to retreat inside himself or as a substitute for spontaneous language.

He's spent the summer in a mainstream preschool environment with two wonderful teachers who leverage his strengths, adapt their communication style to his needs, and respond with compassion to his challenges.

I would go so far as to say that in some ways, Ben is now within an acceptable standard deviation of a typical four and a half year old.

But as Ben's social skills develop and as he finds himself more comfortable joining the wild world of preschool playground politics, certain aspects of his personality become exposed, and he becomes much more vulnerable.

When he used to spend most of his time at school playing by himself, his extreme rigidity and need for control was hidden in plain sight. Walking around the playground perimeter by himself, reciting a story, allowed him to exert control over his world and avoid the unpredictability of other children.

Now, the social urge we always knew to be there is backed up by the language and play skills he needs to join in. But when he does, he becomes quickly upset when other kids don't do what he wants, or don't respond to his orders the way his trains do.

A little girl at a playground is shoved when she is piling wood chips on a swing in a way Ben finds unacceptable.

A playmate is hit when he doesn't say "goodbye" after Ben repeatedly waves and yells goodbye to him.

A classmate is scratched to the point of bleeding when he tells Ben he can't come in the play structure with him.

Another playmate is pushed when he unknowingly enters the space Ben has established as the castle in the story he is methodically acting out.

A boy is kicked when he pushes the button in the elevator before Ben.

And that's just in the past week.

It's not only play with other children that brings out this rigidity, but other unexpected turn of events as well.

The worst episode Ben had this summer was when a new staff member at the school (who had no information about Ben's challenges) was pouring water from a pitcher for Ben to have a drink. Some water spilled on the table.

Ben threw the pitcher, went after the teacher, and proceeded to tear apart the classroom before a more experienced staff person got a hold of him.

My impression was that there were a lot of things that contributed to the outburst beyond spilled water - it was simply the final straw - but things like this make me feel utterly helpless. Especially when there is another child hurt, another parent or adult who is distressed.

I become completely forgetful of the progress he has made. I forget that he will sometimes take deep breaths to calm himself down, that he can sometimes redirect himself with minimal prompts, that he reaches out for help more often, and expresses his feelings more easily.

My instinct is to protect him, but I can't. How else will he learn flexibility except by being in the world with all its spilled water and other injustices?

And how do you write an IEP goal that measures mellowing out?


Anonymous said...

For Connor (now 7) when he was at the point where Ben is now, my mother called him the "crown prince" because he wanted to order everyone around & would get violent when others did not follow orders (& still does sometimes, but it is a lot better now). We tried creating scripts, roleplaying how to handle things. Connor seemed to totally lose his language when he was upset & could not communicate to others why he was angry with them. Memorizing phrases seem to help him & the practice of roleplaying made these situations more familiar and less scary, or at least serve as a warning that he might lose it soon to the adults around him.

jaki said...

I so admire how you "know" you seem to be inside his head and his good times and at not-so-good times. That must be so comforting for him.

Susan said...

Oh boy, I can so relate to this. It's the rigidity that's hardest to handle, even when the impetus for it is so good. Ben is right there on the bubble, and all of the new sounds and sensations and feelings are so overwhelming. We see this more difficult behavior when Isaac is having a developmental leap, which doesn't make it any easier. If your teachers can try to facilitate the mellow, that would be ideal. Does Ben have any ability yet to replay what happened and narrate why he was upset? We've found that writing down feelings (or narrating them in a story) has been really helpful. Hugs from across the bay...

Drama Mama said...

Wow. My kid is more the under-reactive type.

It's all hard.

Time. Patience. Cocktails.

That's all I've got.

Jordan said...

I agree that you are incredibly gifted when it comes to understanding what is going on in Ben's mind, and that is really important and not always something people are able to do. I'll bet for you, though, that's really difficult because you are also feeling his distresses and fears.

What popped into my head as I read this post was "drama therapy". I've seen intervention with a really good drama therapist make an enormous difference in working through these things during child-led, motivating play - they are freed up to share their fears and concerns and act them out (usually as other characters of their choosing) and explore various outcomes.

You really can and should have IEP goals that measure mellowing out! Those would be emotional regulation goals that work towards and measure a child's ability to calm himself when stressed and his ability to communicate his need for soothing to adults in the environment. If you ever want, I can email you some examples. (They're from SCERTS, of course!)

Roger Travis (TinPeregrinus) said...

Hi! I've been popping in every few days for a few months now, and I wanted just to thank you for your wonderful insights and the incredible grace with which you share such traumatic material. My son Peter is 5 and about to enter kindergarten; he sounds so much like Ben it scares me sometimes, reading your blog.

YMMV, but something that seems to help Peter's rigidity is the gentle but firm imposition of boundaries to what he may be rigid about. My theory is that the imposition of a rigidity coming from my wife and me helps him feel secure about being less rigid himself. Thus, at bedtime he may be rigid about what's going on in his bed (batman toys, cars, etc.) but not about what's happening on the floor (that is, we're allowed to clean up his room a bit :D).

Thanks again for this wonderful blog.

Sarah said...

I, too, have checked in throughout these last months. My son is almost 5 and has come so far in 2 years I hardly remember where we started. We have worked through "The Social Skills Handbook" as well as other books to help Gabe understand how to deal with other people. Probably one of your therapists will have introduced this to you. But if not, check it out. It's basic, has pictures, and has served our family well (even my "normal" 3 year old). Sorry, I can't recall the author, but I think the name alone will find it for you. Good luck and God Bless.

Penguin Lady said...

My son is now five-and-a-half and was at a similar point about a year ago. He would not hit as much as he would melt down at the slightest thing. Since then, he, too, has been in a typical preschool with loving teachers (small ratio, both teachers either parent or have significant experience with similar kids). He has come MILES this last year (and I do recall my pediatrician saying there is a huge leap for all kids between 4 and 5 or 6). As I am sure you know, kids like Will and Ben are predicted to come more and more around as their language skills continue to build, thanks to their hyperlexia. Will went from the loner kid repeating stories on the playground, to odd player in the group (who would try to "push NAME back to your house!" when frustrated b/c they were not playing right) to nearly typical today. The only thing he does now is repeat a play sequence even after the other kids have moved on to another game, e.g., sliding and saying the same things they were all saying together. I do still worry that his social interactions remain a bit dependent on the other people "getting" what he is trying to recreate, but he does seem to work it out more and more. He starts at a great all-IEP school next week for kindergarten, which will help tremendously (Currey Ingram in TN). Perhaps this will give you a chuckle - the other day I heard him say to his just-turned-3-year-old sister, "If we are going to avoid separation (my threat b/c they were squabbling), we have to address this friction between us." It was from Magic School bus, which he promptly told me when I asked. Hang in there.