Saturday, October 31, 2009

#23 Does your child react to Halloween?

Holidays disrupt the routine that so many children on the autism spectrum enjoy. This can lead to meltdowns and shutting down because of the sensory overload. How do your children/students/patients react to Halloween? What do you do to help them cope?

Generally speaking, I am a Halloween and Valentine's Day Scrooge. They are excuses to eat huge amounts of sugar, and while I don't subscribe to the "sugar" sensitivity belief (I think the "high" is more to sensory stimulation than what's ingested, but that is my opinion based on observation of my own kids), the sensory stimulation of Halloween parades and parties and THEN trick-or-treating is just too much.

Jack was so excited about the school's Halloween activities yesterday. He wanted to do the parade, which at his school included around 1,100 kids and was outside on a very windy day. He walked with his regular inclusion class rather than the TEACCH class, with his aide on hand as an extra set of eyes. He wore his costume at least part of the day and enjoyed his class activities.

Last night he could tell me what costumes his friends wore and what he ate (or didn't eat) at the party. It was a positive experience overall, even if his speech therapist got precious little good work out of him last night at 5:00.

It was not my choice to schedule OT/ST at the hospital at 4:30-5:30 on Fridays. The OT cancelled yesterday. Probably a good thing.

He also wants to go trick-or-treating RIGHT NOW, 8 hours before begging begins. It'll be interesting to see how long he lasts this year. It seems like every year, he goes a bit further with his brother and dad (I'm always home handing out the candy). Two years ago, he did our cul-de-sac, announced, "I'm done!" He set down his candy bucket, took off his costume (a Thomas one that's easy-in-easy-out), and ran home, leaving the bucket and costume on the sidewalk. Last year, he let George bring him home after going to more houses. His tolerance for all the stimulation improves each year.

And speaking of his costume.... Jack goes as Thomas the Tank Engine every year, and he loves his costume (which we've had for six years...his brother used it before him!). It's looking a bit rough, but what a good investment it has been since it's one-size fits all!

Please share your Halloween experience, scary as it may be!

And Happy Halloween, everyone!

Tuesday, October 20, 2009

#22 Classroom Volunteers, Parents at Therapy Sessions

I finally got to volunteer in Jack's inclusion class last Friday. What a HOOT! His TEACCH teacher made sure he came to the inclusion class while I was there, and I got to play some games with Jack and another child working on initial blends (matching initial sounds of pictures on cards to the proper blends on a chart and such). Jack did so much better than I thought he would (much better than he would have done last year). It helped that his partner was his best friend, a very kind and smart boy whom Jack befriended last year in kindergarten.

I also worked with several kids from my literacy tutoring last who are now doing really well. If you've ever considered volunteering at an elementary school to help with reading, I highly recommend it. It's so rewarding and fun!

Jack's TEACCH teacher can't have volunteers in her class. Some of her students become too agitated by strangers being there to work (breaking routine...such a no-no for so many kids on the spectrum!). Last week, some of them were a mess because all the aides were subs for three days. I totally understand this and don't resent it, but it is frustrating not to see for myself what is going on. I'm just curious, not at all concerned, mainly because his teacher is such a good communicator, asks lots of questions, and really listens to what I say.

Interestingly, she has invited me to stick my head in the class whenever I'm in the building to say hi to Jack. I appreciate the invitation and will definitely take the opportunity in the future, while being careful not to abuse it. I know how little work his speech therapist, OT, and PT got out of Jack early on when I sat in. I had to stop going back with him because he focused on me (asked for hugs every 30 seconds, wanted to sit in my lap, etc.).

Today's question is this: How welcome are you at your child's school? If you're a teacher, how welcome do you make your students' parents feel? If you're a therapist, do you prefer to work with children alone or with a parent present? If you homeschool, did parental accessability to the classroom have anything to do with your decision to pull your child from school?

Sunday, October 11, 2009

#21 How do you deal with stims?

For those who don't know, stimming (short for self-stimulation) is a repetitive behavior that absorbs a child's attention. These behaviors are extremely diverse, ranging from self-injurious head banging, to staring at fans, to reciting movie lines over and over, to playing with trains at eye level for hours on end. All sorts of odd behaviors crop up in children on the autism spectrum, some more alarming than others.

Stimming behaviors may rise from the person's need to distract him/herself from unpleasant things in the environment or sensory inputs he/she can't handle. Think of Dustin Hoffman's character in Rain Man: he would start reciting the "Who's on First" skit whenever things got stressful for him. Lots of children on the high-functioning end of the spectrum can learn to control their stims while at school, but when they come home, they need to decompress with some stimming. Stimming may also be an obsessive-compulsive behavior...something the brain simply demands the person do for no good reason.

Because so little is understood about WHY people with autism stim, so-called experts in the autism community disagree on what to do about stimming. Obviously, self-injurious stimming (running hands under scalding water, head banging, picking) must be extinguished for safety and health, but what about more benign stimming? Should all stim behaviors be extinguished? Should stimming be allowed as a reward for good work? How forcefully should stimming be extinguished? It's confusing and stressful for parents to have conflicting advice. But without knowing the "why" of stimming, how can experts confidently give good advice? I'm baffled.

Jack has recently been singing a lot at school when he doesn't want to work. His repertoire of songs has grown over the's not just Blue's Clues anymore. But it's not appropriate at all in a classroom environment or on the bus to break out in random songs. Kids are going to pick on him, plus he's distracting to others.

At home, the stimming has changed a bit. He sings randomly and blurts out movie lines at the dinner table, for instance. This morning, however, he was eating an apple fritter (a fall treat for our family), and said, "This is the life!" It's a movie line, but used totally appropriately and intentionally.

He also makes annoying repetitive noises while playing with his cars and trains. But the noises he makes are becoming more varied and unpredictable, more like normal little boy noises, and often, they are JUST LIKE regular little boy behavior, especially when he includes his brother in his play, which happens more and more. This reminds me the line between abnormal and perfectly normal behavior can be quite hard to draw.

It also gives me hope that Jack's overall stimming is heading in the right direction.

Jack's noises are hardly difficult to deal with. Annoying, yes. But not difficult. Jack's diagnosis, PDD-NOS, is a form of autism that generally shows less perseverative behaviors than full-blown autism, which can involve downright alarming stims. In our case, we chose not to deal harshly or absolutely with extinguishing stims. We allow Jack to have a "decompression" time when he gets off the bus because he needs it. Trying to engage him in conversation is difficult at the best of times, and downright impossible when he gets off the bus.

I have no idea if this is the right thing to do, but it feels right to us. For some reason, Jack needs these behaviors, and if we can work on extinguishing them in certain situations (I discourage inappropriate movie lines in public and at the dinner table, for instance), we can hopefully move him in the right direction without being cruel. We ALL do things to calm ourselves and deal with stress; we usually do them in private and appropriately, or we engage in public activities (yoga class, dining out with friends) that serve the same purpose.

Guiding Jack toward more appropriate stimming has been slow, but we're making progress. Perhaps if we'd used ABA training, he would have made progress faster. But is faster better with benign stims? I simply don't know.

What stims do you see in your child/patients/students and how do you deal with them?

Friday, October 2, 2009

#20 Coping with Uncertainty

I take Jack to his developmental pediatrician every six months. I try to be organized for the meeting, with work samples, copies of IEPs and any evaluations that have been done, etc. I tell him what Jack is doing, what milestones he has reached, what the schools are doing with him, what new difficulties he's having.

But I always leave the appointments feeling like I barely scratched the surface, like I needed to ask more questions (even though I know most of my questions have the same answer: "We don't know"). There's always an uncertainty that leaves me feeling uneasy, as if I should have said more or asked more. But how much could or should you cram into an hour-long meeting?

Basically, I feel like, right now, at this time, everything that can be done for Jack is being done by me, George, Nick, the schools, and the therapists. He's making progress, and it's all good. But I keep looking for the blind spot, whatever it is that I might be missing that I'm not even aware of. The doctor is there to catch my blind spot because he knows more about autism than I ever will, and if he makes no recommendations, is it because there is no blind spot or because I didn't give him enough information to see that blind spot himself? I am, after all, the expert on Jack. I spend more time with him and know him better than Dr. Z ever will.

This last meeting, Jack started feeling confined and needed to step out into the hall. He walked out, blew me a kiss, said, "I love you, Mommy!" and left the door ajar while he "went alien" with his Ben 10 watch in the hall--play that is really more stimming of repeating movie lines and gestures than imaginative play, but whatever. At least it's not just Blue's Clues anymore. Dr. Z commented, "He's a very happy person, isn't he?"

Yes. Yes, he is.

Is my best--and the doctor's--enough? It has to be, I suppose, but I still wonder. Grappling with the unknown is hard work. I wonder if faith and our best effort are enough.

Two things I do know are that Jack is a happy person and that he's making progress. I'm glad Dr. Z sees that for himself in our hour-long visits. Because maybe, just maybe, that is the most important concrete measure of what we're doing. If we were pushing too hard, he wouldn't be happy. If we were not pushing hard enough, he wouldn't be making progress.

How do you cope with this uncertainty? Can uncertainty even be coped with? Some days I say yes, I'm coping quite well, thank you very much. Other days, I'm wandering alone in the forest wondering where the hell I am. I'm starting to think this is normal. What do you think?