A better day

The weather today was beautiful here, a little windy, but temps in the 70's. Liam had somewhat of a better day today. This morning after breakfast Liam disappeared and was quiet, normally that means trouble. She went upstairs in the spare bedroom the boys use as a playroom and found Liam removed a boppy pillow cover that exposed the stuffing inside. When Jill got there Liam had removed most of the stuffing and was throwing it around the room. She made him clean it up with her and he did not like it one bit. Liam regularly will make a mess, but will never want to clean it up.

Liam's behavior was much the same as the past couple days, running around from one thing to another and not sticking with one thing he was playing with. At one point Jill noticed Liam running it looked like he had something in his mouth. Sure enough she found he had 2 quarters in his mouth as he was running around. Shortly after she saw the same thing, only this time he had a commemorative coin the size just bigger than a 50 cent piece. During the day she caught him picking his gums only a couple times, nonetheless this behavior continued. Today the melatonin worked as it should, Liam was in bed within an hour of taking it.

During meals Liam's eating habits were sloppier than usual. We work with Liam all the time to have him eat with his utensils and take small bites. He quite often will shove as much food in his mouth as he can, another common thing some autistic children do.

Liam had his occupational therapy today and Liam who normally enjoys seeing Mark (OT) kept telling Jill he was done and wanted to go. Mark does a very good job with Liam, even when he can see Liam does not want to fully participate. Jill showed Mark Liam's report card, and he shared his thoughts with us on it.

Since the weather was warm it was a great day to take the kids outside. Seamus was outside playing with nearly every kid in the neighborhood and had a ball. The Easter Bunny's problem the other day was solved today. When I took Aidan and Brendan out I told them the Easter Bunny left them a little something in the garage. They saw their big wheels and were all excited. Aidan rode his down the driveway and back in the garage, and poor Brendan's feet could barely reach the pedals! He quickly said the hell with it and went on to other toys. Aidan quickly got off the big wheel and wanted me to get the wagon out. I had to clean it up since it was stored under a lot of stuff in the garage. Aidan and Brendan enjoyed their "walk" around the block. Upon returning they saw Seamus and Eli and wanted to play with them. As we were about to go Jill and Liam came back from therapy and joined us. Liam at this point was the calmest I've seen him in days. Not sure why, but when it came time for bath and jammies, he was quite cooperative.

As always, we'll see what tomorrow holds. One thing that can be certain is that Jill and I will be here and hope for the best. Hopefully we will start seeing some results from the anafranil. It's only been day 3, and doctors tell you it takes almost 3 weeks for it to take full effect. Tomorrow we will hope for the best again and keep moving on.

A long day.

Jill and all 4 boys were going over to one of Seamus's friends from school for a playdate. Jill was quite nervous about taking them all, especially Liam (age 3). During the morning Jill noticed again how Liam was just all over the house going from one thing to the next, and not staying with any one activity for a length of time. This is his 3rd day on a 1/2 tablet of anafranil and so far we have seen no change in his behavior. Liam was often seen climbing on household things he should not. For example:

• she caught him standing on our 3" wide window sill holding on the window frame
• she caught climbing up the front of the entertainment center to try and reach the remote control.
• he was regularly climbing across furniture and jumping to the floor
• while he was to be eating he could not sit still. Instead of eating a couple french fries at a time, he would shove a handful in his mouth and hardly be able to chew.
• Jill would also catch him picking at his gums again.

While Jill was at the playdate with the boys Liam's behavior was much the same at the house. Liam had gotten into the master bathroom and turned the tub on twice. He then got into their VHS cabinet, removed all the tapes, climbed inside and closed the door. Liam then went into their study and found markers. He then colored his hair, head, hands, and face. Jill was embarrassed by the whole situation as she was doing her best to wash off the marker from Liam. For comparison sake, Aidan & Brendan, both 2 1/2, simply played with all the toys and were well behaved. Seamus and Jacob had a great time playing together.

When Jill arrived home she fed the boys. While she was cleaning up the kitchen she heard the new Toshiba 20" volume blaring. She went in and found the volume turned all the way up, the dvd drive door jammed in the open position, and could not turn the tv off. She called me at work and I had her unplug the tv to turn it off. The rest of the afternoon Liam's behavior was the same as in the morning.

When I arrived from work I attempted to fix the dvd door. It is apparently off track and can not be easily popped back on. I then took the tv apart to try and have better access to it, but Toshiba has this thing drive well protected. I am going to have one of my co-workers who is excellent at these repairs take a look at it. Right now, only the vcr is working. We are back where we were 5 months ago with our combo tv, vcr working, dvd broken. At this point I am totally exasperated with trying to have a dvd player. I have to wait and see what I can do to either fix this, or just leave it broken. Taking it to a repair center is about the last thing I want to do right now after my last experience. That is a whole other story, but to summarize, it took 4 1/2 months to get our previous tv replaced due to a manufacturer defect.

The worst part to the whole day was how angry towards Liam I was. While I was trying to fix the dvd drive Liam kept asking me questions. I was completely angry at him and I started hollering at him for breaking the dvd drive. Liam went into the family room with Aidan and Brendan and stayed away after that. When it was bath time I went upstairs and found Liam bouncing on our bed. This did not help the situation. I pulled him off the bed and put him in the tub and yelled at him. The way I handled each of these situations was absolutely poor. Liam does not totally understand why he does what he does. This is one of those mysteries to understanding autism that no one may ever know. All I know is the way I reacted and handled these situations was totally ineffective at helping him. At least this day is done now, tomorrow we will wake up and hope for the best again.

Liam and Seamus are off from school this week. Liam is on his second day of a 1/2 capsule of anafranil. Jill has said she has not seen really any change in his behavior. He has been unable to stay with any task he starts for even 2 minutes. He constantly wants movies changed, a video game hooked up, and on a tv he is not watching he wants Disney. When he does not get his way his behavior is whiny and angry. His tantrums of crying and being upset would last a short time, but they kept repeating throughout the day.

Liam has continued to pick at his gums. I looked at it when I got home from work and his gum area on the bottom row of teeth, on his left side, were very red and sore. We are continuing to monitor this and trying to stop him when we see him touching them. Liam did something new today that Jill watched for 15 minutes. He would position his forehead on the berber (sp?) carpeting like he was going to do a somersault. Instead he would push himself around the carpet with his feet. Hi forehead then had what looked like rug burn, but was simply just red from what he did. He no doubt has some sort of input in doing that.

Liam took 9mg of Melatonin tonight before his bath at 7pm. Afterwards I could tell he was already feeling sleepy. He was asleep by 8:15, so today the melatonin worked. We will continue to monitor this.

Jill and I also were talking about Liam's report card from school. Liam is in the Olmsted Falls Center Based Pre-school program. Liam has made some progress, but one area in which we totally disagree with is the school's OT. Liam enjoys swinging like most other autistic children. It is a way for him to organize and calm himself. The OT does not believe that he needs to do it any longer. Jill and I totally disagree with this. We now need to look into this further and will probably end up meeting with Liam's teachers and OT to discuss his IEP, and look at making changes. Liam currently receives 1 hour of OT per month through the school and 1 hour per week through Lifeworks at Southwest General Hospital. Doctors recommend at least 20 hours per week of therapy for Autistic children.

We are fortunate that my health insurance covers this at a $20 co-pay per session, 30 sessions per year. We figure by August we will be out of therapy sessions for Liam. Paying for them out of pocket will be about $225 per session. When insurance runs out, we need to figure out what we can do until January 2006 when he can resume therapy at Lifeworks. Interruptions to his routine like this are hard for him to adjust to, as they are for all autistic children.

Easter Sunday, and new medication for Liam

Today Jill and I started Liam on a new medication, anafranil. Liam has been on Focalin in the morning, and melatonin at night. (previously was on clonadine) We weened him off the clonadine and started using a natural herb melatonin. The melatonin has poven to be inconsistent in its performance. Sometimes he is asleep within a half hour, other times he simply does not fall asleep, like last night, Liam was up until 11pm. When the melatonin wears off, Liam has been up as early as 5am and ready to start his day. He in turn wakes up everyone else with his noise, which he can't help.

Focalin was a medication Liam was on to help control him. When Liam was on this, he was often extremely mellow, depressed looking, and would fidget with his fingers constantly. He would also repeatedly ask the same questions to the point of obsession.

To slowly assimilate Liam's body to the new drug anafranil, we have to take a 25mg capsule and split it in half. We then have to pour it out on a clean sheet of paper folded in half. Then we take a knife and split the powder evenly to our best ability. Now to administer this to Liam we have to pour the powder in some yogurt on a tablespoon and serve it to him. We put as much yogurt on as we cold to hide the bitter taste. Based on Liam's reaction, he still tasted it. This has to happen twice a day for the next 14 days. Fun.

Today is also the Easter. The kids all got neat stuff from the Easter bunny. Some candy and a toy for each. Seamus got a Spiderman video game to play, and a kick stand for his bike. Liam got a Buzz Lightyear, a Jessie doll, and a Buzz lightyear star command movie. Aidan and Brendan (our twins) each got a Care Bear. The Easter Bunny ran into a problem Saturday night assembling 2 big wheels at 11pm. One was previously opened at Wal-Mart and was missing parts, and the stickers were already placed in the wrong locations. The Easter Bunny had to put away the big wheels until the one can be replaced. Thanks Wal-Mart.

The day went pretty good. The kids all enjoyed their new toys and of course the candy. Liam was very impulsive all day. We believe it was a combination of the candy, and the change in the medication. We will see each day how he does. Liam was given 15mg of melatonin at 7pm and at 9pm still was not asleep. Liam has also been picking at his gums a lot lately and is leaving blood stains on his blankets. His gums are noticeably damaged in a couple spots. On one tooth the gum is down to the root. Liam has seen a dentist once who said there was no problem dentally. What Liam is doing is a sensory issue. For some reason this is what he does. Tomorrow will start the second day on anafranil, so we shall see how he does. Liam is off school this coming week, so Jill will be able to see how he does all day. Tomorrow is a brand new day, and as we always hope, he will do better.