Being properly supportive....

So, Robin, my younger son with encopresis, invites me into the bathroom for a look at his latest effort. After I'm done admiring it ("Look at all the bubbles!") he proudly informs me that he has "a waggy little penis."

To which I can only reply, "Yes. Yes, you do."

Treatment Guidelines for Primary Nonretentive Encopresis and Stool Toileting Refusal

Yup, my almost five-year old son is still not toilet trained. The title is the title of the article in an issue of American Family Physician I am using as a rough guide to working with him. We've already started our poop diary and will be scheduling trips to the toilet, with accompanying books, throughout the day. I can't see fitting in more than one or two trips past the normal early morning, before bath, and before-we-leave-the-house trips so it shouldn't be too difficult.

Now that we've had his developmental evaluation, and I know this problem is not due to any developmental delay, I can relax a bit and just work with him. Poor kid does fit the profile for ADHD though, and has a poor working memory. I imagine that is contributing in some small way to his issues with this.

And since then.....

Oh, well so much for that promise. I'm trying....yet again......for the value of relaying my experience of homeschooling my son with special needs and it's effect on our family.
So we went to Remlinger Farms today, sort of a combination farm/amusement park out in Carnation. Mostly the day went well. The boys enjoyed the pony ride, the train ride, the car ride, the canoe ride, and the roller coaster. They got to buy the bags of semiprecious stones they had coveted from a previous trip.
Then....we came to the last ride of the day. This one consisted of a winding track, around which people rode on adult-sized tricycles. The staff expressed concern about being able to let everyone ride before they had to close, so I let the boys ride around the track by themselves, so that other kids could go.

At some point, I thought I heard yelling, but the music was blaring so loudly I couldn't be sure. Then a mom and her daughter ride up. The mother informs me that my son was using bad language and bad manners. I ask her exactly what kind of language he used. She said that he was yelling. Oh okay. When someone says bad language to me, I automatically think it's profanity. They walk off. So Batman arrives, gets off the bike and starts yelling. I grab him and start talking to him to get him to calm down. Mom and daughter show up again. Daughter says to Batman, "You are so busted." I try to gesture her away and she takes it to mean that I'm siding with my son. She starts yelling/screaming at him about how she didn't do anything and he starts yelling back at her. The mom informs me that she feels sorry for me and drags off her daughter, who is still yelling.
I turn back to Batman and ask him what happened. Apparently the girl blocked him with her bike......and I can guess the rest. It was probably an accident and Batman freaked out. I still have to wait for Robin. Sam asks to go over to the hay maze and I let him. After a few more minutes, Tom arrives.

I walk out of the ride with Robin and he runs over to the play bus, where the mom and daughter are standing. I walk over to the daughter (she is closer) and she immediately starts protesting that she didn't do anything. I say, "Hon, I know that you didn't do anything. (Mom comes over and stands by her daughter.) When I waved at you, I was trying to get you away from the situation and away from his.....meltdown. I know it must have been really scary for him to get so angry over something like that...." Then segued into the explanation over problems with emotional regulation, high-functioning autism, etc. Their eyes widened when they heard the "a" word--so they obviously knew about it but it had never occurred to them. Afterwards, they thanked me for coming over and explaining. And the good news is, after I left them, I went over to Batman and persuaded him to apologize for being so angry. He did, too, the next time he saw the girl.
So, at least that story had a happy ending, somewhat. As he gets older, outbursts like that freak people out more and more.
On the way home, he asked if he could go back to the farm to ride the roller coaster. He is nervous of roller coasters, so sat out when Robin and I rode it. I said next weekend. He demanded to know why we couldn't reverse time, got into a fight with Robin over it, and nearly bit him. For that, he lost his TV privileges for the evening. (The biting's got to stop, too. He is too old for that.)
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A big change

A few months after my trip into a therapy free world, I had an IEP meeting in late May after a reevaluation of Batman's gross and fine motor skills and his academic skills.
The upshot was that he had core muscle deficits that were keeping him from progressing with printing and that he'd progressed so little in reading that he'd need to go into the resource room for it. He would also need to go in for Math, not because he didn't understand it but because he could not print quickly enough to keep up with the work in class.
I listened to everything and agreed to it all. And then I went home and thought, "I can't do this anymore." A week later I sent the District office my Declaration of Intent to Homeschool.
I'll write a more complete account of this soon. I will be gussying up the look of this blog and I will finally force myself to become more proficient with downloading pictures. I'll also be shifting the emphasis to homeschooling as well as autism. More to come soon, I promise!

Quitting the social group

Well, I did it. I took the leap into a therapy-free world for my son. Outside of school, that is. Sam's independent speech therapist "graduated" him last November. She said that he was successfully learning his verb tenses and making inferences from story illustrations and that he was picking up verbal cues from other people, and so no longer needed to see her. He still gets speech therapy in school, mostly practice in conversation.

I also pulled him out of his social skills group. Our last meeting was last Thursday at a bouncy place. It was meeting once a week at different venues. The kids would bowl, ice skate, or whatever, then sit down in a circle, play games, practice turn-taking and what have you. The group meeting time was a pain in the rear end, meeting from 3:45-5:45, putting us in a time crunch for dinner and bed, not to mention rush hour traffic, but I'd mainly been feeling resentful of the group for some time, which I think was a signal from the subconscious that we were ready to be done. When you are no longer grateful to a therapist for providing effective services your child desperately needs.....well, perhaps your child no longer desperately needs them. Sam is socially successful at school. Most telling: When I told him we were quitting the group and I asked him how he felt about it, he answered, "Happy. We get to go on our own!" Sam's a fairly outgoing child, so that was interesting coming from him. Maybe he didn't think he needed it either.
With social skills, we are done. Sam gets speech therapy for conversation and occupational therapy for fine motor skills at school, but that's it. I think he enjoys the pull outs for their own sake and to get a break from class.

It's been awhile, but let's try it again.....

Sam is six now; he had his birthday a few weeks ago. He is in a mainstream kindergarten class, and is doing relatively well. Academically, he is fine and he is well liked and accepted by his peers. His main problem these days has to do with his executive functioning difficulties. He has a hard time with emotional control, with transitions to non-preferred activities, with paying and sustaining attention. He is frequently unpredictable, in positive and negative ways. Fortunately, we have a fabulous teacher and a great IEP. The school has been very accomodating. Sam has a separate desk where he can take a break to play with playdough. If that is not enough, he can request to go to the office, where he plays with Legos in the principal's office. He has learned to do this independently. So, he's doing pretty darn well so far.
His independent speech therapist graduated him a few months ago, so now all he gets is 30 minutes once a week from the school. The school therapist focuses mainly on improving his conversational skills.
He does get occupational therapy, also for 30 minutes once a week, to work on his fine motor skills. His printing is messy but is steadily improving. So far, so good! Maybe there isn't a reason for this blog anymore, as we seem to have made it for now.

Grandparents in town

My parents came into town for a visit today. So far Sam has coped with their presence better than I ever could have expected. They aren't complete strangers to him, but as they only visit a few times per year, he doesn't know them well.
When my mother asked for a kiss he went up and kissed and hugged her, then (upon request) to my father as well. They can't believe the difference in his speech and behavior in just a few months and say that his eye contact seems completely normal. Then he asked my mother to watch him play a new game he'd come up with, sliding down the stairs on a boogie board. "Watch me, Grandma!" and "I went really fast!"
Then, when I told him he was crazy, he answered back, "You're crazy, Mom!" then for good measure, "You're crazy, Grandma!" and "You're crazy, Grandpa!"
Thom made his presence known in his own way by proudly walking five or six steps, then collapsing to the floor.
On the not-so-great side, (the bad part being the reason) the co-sleeping arrangement may, thankfully, soon come to an end. My husband watched Sam pinch Thom's nose closed in an attempt to halt his loud breathing. He's going to start rocking Thom to sleep in Sam's room, then putting Thom to bed in our room once Sam has fallen asleep. Let's hope it works out. Sam needs to start sleeping in his own bed, in his room.