A swing!

Hollis received a swing from the human services organization Fidelity House, to help with some of her sensory needs and to be used as a calming tool. She loves it! Fidelity House is an organization that helps developmentally disabled people better participate in their families and the community by providing consultation, education, and other support. This swing is just one of the many items they can provide: we've been to a behavioral crisis intervention training class, they have had an entire movie theater showing "Up" made available for DD folks and their families (movie theaters are not an easy thing for a kid like Hollis to act appropriate in), and they have other events and classes throughout the year.

We got the swing partially as a result of a sensory integration evaluation that the Department of Mental Retardation conducted a few months ago. Many kids with developmental delays and autism spectrum disorders have behavioral issues that can be related to how they process sensory information. Hollis has always had some sensory integration issues, in which she presents as sensitive to light touch, but prefers stronger "input", and she can be overwhelmed by busy environments with a lot of visual and auditory stimuli. If she gets too much of this stimulation, she can go off on a behavioral bender, sometimes becoming very aggressive, or withdrawn, or conversely, supercharged! Sometimes she seeks out a lot of stimuli, hurling herself against a couch, repetitively, banging her head, or sticking her fingers in her eyes. After the sensory integration assessment, the swing was recommended as one therapeutic method to give her appropriate sensory feedback, and to soothe her before she gets to the point of a behavioral breakdown.

No new tale to tell

Things have been rolling along a similar path since my last post. Still struggling with behavior issues, taking a step forward then one back. We're working hard with school to figure out strategies to help avoid the aggressive behavior, and how to deal with it when it happens. Hollis always manages to be a step ahead of us just when we think we have a plan in place! Other than that, health has been good, growing like a weed, and just getting to be a very big girl!

Back to the drawing board with behavior

We had a fun Friday (insert sarcastic tone here). Hollis was a behavioral nightmare all last week and it came to a big frothy head on Friday. She wouldn't eat. She wouldn't drink. She would hit, scratch and bang her own head. We don't like any of these choices. She also ended up with a low grade fever, so we determined the best course of action was to see if this behavior was related to an illness.

Brought her to the pediatrician, and Hollis beat the living daylights out of me the entire time we waited (a grand total of about 10 minutes). Continued the beatings while I explained to the doctor what was going on. As I was trying to corral the fists of fury, Hollis made her way over to the doc and belted her! Lovely child. The doctor then said she wasn't going to be able to do an examination on her in this state, and sent us to the emergency room where they could sedate her if necessary to get the examination. Oh goody!

Off to the ER we went, fully prepped for an awful time. Daddy joined us shortly after Hollis and I arrived. For entertainment, I ordered up a blood pressure cuff, coincidentally from an old childhood friend who works at the hospital, since I've discovered that Hollis thinks these things are hilarious. The ER doc was fully prepared for a wild child, courtesy of a phoned in warning from the pediatrician, but of course, Hollis decided she was going to be sweetness personified. After her examination determining that Hollis had no fever, no sign of strep throat or ear infection, we came to the conclusion that it was side effects from her seizure meds and the lack of behavior meds that were making her so aggressive, irritable, self-injurious, and generally miserable. A personal consult from her neurologist who came to see what the hullabaloo was all about confirmed our suspicions.

So, the bottom line is, if it ain't broke, don't fix it. We went off her original behavior med, Risperdal, which was very effective, but we were searching for something with fewer side effects. What we ended up with was trying a new med, Abilify, which turned her into Godzilla. We all agreed after this failed venture that Risperdal was just dandy, and we'll just stick to what we know.

Off behavior meds for a couple days = happy?

We decided to give Hollis a break from her behavior med rollercoaster for a few more days to see if we can manage her without them. She's still very aggressive, but is listening more than she was on the last round of drugs, and is 1000% more alert and happier. That last one just was WRONG!

Today it was about 90 degrees, so we spent some time outside doing "summertime" things. We went to the park, which includes an enclosed area for skateboarders, and Hollis was just thrilled to see all the boys there. She could have stayed there all evening drooling over the skater boys.

Not this one either...

The latest behavior med Hollis went on made things worse. She has done nothing but beat the living daylights out of her poor PCA and us all week long. Our behavior management tactics have failed miserably: when she hits, she is supposed to go into her "time out" room. Well, Hollis has decided that she likes it in there, and will put herself in the room willingly. Not much of a threat anymore. The best part of this miserable comedy is that her PCA realized the time out room wasn't working, so she made her sit in a corner, just like we did in the old days. Hollis didn't like that much, but when she was done with the corner and told she could get up, she walked over to the time out room and closed the door behind her and stayed in there for awhile. She is such a smart little devil, and knows how to press all of our buttons! Thank goodness school vacation is over and she'll go back on Monday. We'll be on a different behavior med by then, and hopefully she won't be ready to go ten rounds with her teachers.

Groucherella

Hollis has her grouch on, big time. She went off one behavior med, and we started her on another. We waited to see what her "baseline" was off behavior meds entirely: it was scratchy, bitey, hitty and generally nasty. Not too nice to live with that, for one and all. Today we started on a different behavior med, and so far, she is whiney, grouchy, antsy and still scratchy, bitey and hitty. Never a dull moment over here!

Way too much fun!

Hollis went to Newburyport this weekend and played on the jungle gym in town, shopped in a toy store, and strolled along the docks, looking at all the boats lolling around. She made a dash for the Harbormaster's gangway, because clearly, she is master of the harbor, but we managed to wrestle her away before she caused too much mischief. We had a very difficult time getting her away from the water (no surprise), and had to strap her into her stroller and run full speed back to the car so she couldn't make a break for it. Once she sets her mind to something, it is hard to change it.

Out to lunch

We took a trip up to Maine this weekend to get some of that good "Fall" air that comes earlier to the good folks up North. Hollis enjoyed the ride up, but was really excited to get out and walk around too. We did something with her we haven't done a many years: we went into a restaurant to sit down and eat. Granted, it was a glorified pizza joint, but we did actually have to sit and wait for our food and eat it at the table. We haven't attempted this for a long time because she would always scream, throw things and be a general menace to society: and that was just in the first 5 minutes!

She actually was able to sit still for about 10 minutes before she had to get up and walk around a bit, but she didn't make a big fuss about it. When the food finally was ready, we took it outside on their deck to eat it. She enjoyed the salad, the french fries and cheesesteak sub, and the whole scene only fell apart toward the end when took Daddy's hat and threw it into some rosebushes. Then the goofball came out: she started letting the food fall out of her mouth and she thought this was hilarious. We left soon after this little matinee performance.

Trouble with a capital "T"

Last week I received the equivalent of a phone call from the principal's office regarding Hollis. She has always behavior problems at school with screaming, tantrums, non-compliance and hitting, so we've had her on a "behavior plan" for a few years now. Her wild woman routine on Friday totally broke the mold, so I got a call from the director of the school asking that we have a team meeting ASAP to try to develop a strategy for dealing with her outbursts, energy, and aggression. A summary of her activities from Friday was that she got up on a therapy table, pulled something hanging from the ceiling and jumped off the table, all before anyone could get to her to stop it. She also had been poking kids in the eyes, and pushing them around, laughing hysterically the whole time. Not nice.

We decided we needed to get her on the behavior med (Risperdal) her Psychiatrist prescribed immediately after this, so we started it up on Sunday night. On Monday at school, she almost fainted (a common side effect of this drug). The doc told us to cut the dose in half and try again. Today she was better, though still sleepier than she has been, but her behavior at school was more manageable. We're hoping that over the next few weeks her body gets adjusted to the med, and we get the positive benefits without the side effects, which apparently is the unthinkable dream.

Psych

We went to Hollis's psychiatrist today to get the lowdown on her behavior issues (being wildly hysterical nonstop, inability to settle herself down, appetite for destruction, sleep disruption, angry outbursts with aggression, etc.) The behavior has changed so much from the time of the surgery, we weren't sure that it was something that was always there, and was tempered by the seizures, or whether the combination of her meds might be doing something new, now that there are no seizures to contend with.

Dr. W. felt it was probably a combination of her mental status changing after the surgery and now having the wrong psych med for her behavior. Prior to the surgery she was on an anti-anxiety med, as we had guessed that a lot of her outbursts were related to being afraid of various situations she was in (claustrophobic rooms, new environments, doc's offices, etc.). If that anxiety is not as much an issue anymore, then perhaps the medicine is what is causing all this new bizarre behavior. So, we're going to wean her off the anti-anxiety med, and see how she does. If things don't improve, or we still are having the off the wall hysteria and aggression, we'll try another med to see if we can better manage her behavior, because she isn't responding to punishment, avoidance, or praise techniques.

Back to school

Hollis goes back to school tomorrow! Hooray! I'm hoping that the routine of school will help her regulate her behavior better. In talking with the neurologist today, he says he sometimes sees behavior problems get worse immediately after surgery, as the child learns her new abilities without seizures. Usually, the behavior issues get better with time. Please, please, please!