Five going on six

That has nothing to do with the number of children we have. That is the age of my oldest child, PJ5. There has been a lot going on with him recently. (Some of which some of you will already know.)

About a month ago, his teacher called to talk about him. Essentially, he was having a behavior problem that was preventing him from making much, if any, progress at school. I call it "flopping". He makes this short yelp/scream, then falls over onto the floor or wherever he is sitting. If you tried to make him get up he resists and may do the behavior again. If you leave him alone he usually gets over it quickly and goes on. The teacher said he was doing this alot at school and wondered if we were seeing the same behavior at home. We did, and I couldn't figure out any pattern to why he did it. It happened at very random times. At home, in the car, you name it. If I couldn't ignore it (say it happened walking down a hallway or in a parking lot) I simply took him step-by-step past it----"stand up" repeat 'til he does, "take my hand" repeat 'til he does, "walk with me" repeat 'til he does...you get the picture. Usually when children with autism have a "problem behavior" you become a detective and figure out the precedent and antecedent to the behavior. Which tells you why the child is doing this and what he/she gets out of the behavior---e.g. escape, avoidance, a treat, attention, etc. But this behavior had me completely stumped.

Evidently, it has his teachers stumped, too. They have tried several different ways to deal with it, approaching it in many different ways, and changing their assumptions about why he was having these "tantrums". But they haven't figured it out either. They won't (or can't---he's pretty big) force him to do things, so this has prevented the teacher from doing one-on-one teaching with him. He won't cooperate. They also had to quit taking him to the "regular" kindergarten classroom, because he would flop in there and once accidentally kicked another child. (He had been going to the regular-ed class with an aide for twenty+ minutes per day.)
Another problem they have is that he simply won't engage with them. He's in his own world and won't come out. That also prevents him from making any learning progress.

Of course, this made me depressed for awhile, then I decided on a course of action. It included reducing his sugar and wheat intake, giving him probiotics again, and dedicating my mornings (while NB is at school and PJ5 at home with me) to working on one-on-one engagement. I do this (engagement) some, but probably not as much as I should. It's hard on me emotionally. I'm not sure how to explain, but imagine you talk to and interact with a child, but they don't look at you or respond much. But you keep doing it. Then imagine that is your son who won't respond to you. Then imagine doing that for a solid hour. Then imagine going through that hour every day. Then imagine the feeling that you may do this forever and still not get much response from your child. I do work on engagement with him everyday, just in small doses throughout the day. That's easier to handle. I decided to start this course of action the following Monday (it being a Thursday that I received the call). But that did not happen.

On the following Monday I was taking him to the doctor with a nasty place on his face (insect bite? rash?) and a low-grade fever. It turned out to be a staph infection and he stayed home from school the whole week. And I had no thought of doing any of the things I had planned. Instead I was forcing antibiotics down him twice a day (and it was a wrestling, crying, screaming thing that could last as long as ten minutes), and cleaning and medicating his sore four times a day. In between, he was lethargic, slept more, and ate little. The only time he screamed was when I gave him medicine or messed with his sore.

The next Monday he was healed enough to be able to return to school. He had started telling himself "no sc-eaming" after I gave him his medicine. I broke down after about 8 days of giving him medicine. I just couldn't do it anymore---looking into his eyes, sometimes filled with fear, sometimes anger, hearing his cries and screams (he was actually saying words like no, stop, and mommy). Fortunately for me, he developed a rash after 8 days of antibiotics and we were told to stop them. Unfortunately, I had to force Benadryl down him for a couple days. On a side note, the doctor doesn't think he is allergic to that antibiotic, but was reacting to something else since the rash came a week after starting the medicine. !!! I think his body had finally had enough of that antibiotic and reacted to it. I am allergic to what he was taking, and he is already allergic to another antibiotic. But, what do I know!?

By the end of this time-period his tantrums had drastically reduced, and he was seeking our company much more than before. He seemed to have more social awareness and was more affectionate and engaged. (not 100% by any means, but improved) After he had been back in school for 7 days I called his teacher to see what they were seeing from him there. She also reported less tantrums, but said he still wasn't engaging with them. And so it stands. I really have no explanation for why his behavior changed while he was sick. A lot of scientists are beginning to see a connection between autism and the immune system, some even categorizing it as autoimmune-related. I have heard a parent's explanation that it's like their immune system is in overdrive all the time and finally has something real to deal with when they're sick.

Well, now for the future. He is going to be in 1st grade in the fall and school will be all-day. That's going to mean a schedule adjustment, and I'm not waiting until then to start. Mornings are not his best time, and he likes to sleep in. We're also pondering whether to take him out of the public school system. (don't tell them that yet) We've always planned to take him out someday, but thought it would be another year or two down the road. BUT, if he's not making progress and they are not able to help him past this roadblock (for lack of a better word) then what benefit is he gettting by going there? Don't get me wrong. I love his school and his teachers and therapists and they have helped him a lot, and they are doing their best and trying (and really want) to help him now. But maybe he has reached the point where he needs something different.

We're going to give it some time (finish the school year at least), and then decide. Then what? Well, that's what I'll be looking at while we let the school do their best. Home-school or Christian school? There's alot I could say on that, but maybe another post. Neither option is cheap. I haven't found any Christian school in the area that actually advertises a "special needs" program. That doesn't mean they don't have someone that might be qualified/willing to help someone like PJ5 in their school. Just that they aren't saying it on their website. If homeschool, then we'll have to really work to make the social opportunities happen, because he needs that.

Also, we are thinking about some changes in the home therapies we are doing. Still in the thinking/praying/exploring stage on this so I won't say more right now. From the beginning we knew we would need to do more for him than what the school provides. There are several options but you have to choose one or two at a time. They all take resources---time, energy, money. And you can't do one for a month and then decide if it's working. You have to allow months of time to pass to see if they are getting any benefit.

As always, we appreciate your prayers for us. Right now, pray that our next steps will be clear to us, and that doors would open or close as He reveals His will for PJ5 and our family.