Christmas time!

This past weekend was quite a busy one for Liam and everyone else. Liam was extremely excited it was Christmas time. Friday Liam was as he has been lately. All over the house and full of energy. During the day Friday he went from one thing to the next never staying with one thing. His energy often causes problems with his brothers. When he leaves the room his brothers will change a channel, movie, or start playing with something he had. He will return a few minutes later, notice this, and screech, whine and cry. Jill and I then have to go and play referee. Friday afternoon Liam was all excited about what was on the ABC Family channel. He must have had me look at the TV guide several times with him to go over the scheduled shows. Friday night was really cute at home. The boys were all excited because the next day was Christmas eve. ABC Family had a couple of the Rankin-Bass productions on that I grew up watching as a child. The boys all had bowls of popcorn to watch the show. They were all so entranced by it all. It was really exciting to see. Liam was just as into it as everyone else.

Saturday the energy levels for all the boys were sky high. Liam was still having his moments of anxiety throughout the day. I did manage to get him to take a short nap Saturday afternoon before we went to my parent’s house for Christmas Eve. Jill had to work into the early evening and get the house ready for Christmas day. I took the boys over my parents and had to reassure Liam that the REAL Santa is the only that might be there. Liam repeated several times to me about how he only likes the “real Santa”. Liam was very good at my parents. He had his cousins Brad, Ryan, and Jacob to play with. Liam enjoyed a lot of the activity because it consisted of a lot of large motor fun. There was plenty of candy and food out that Liam just kept munching and drinking pop. I had to keep an eye on how much he ate. Once he gets started on something he likes he will not stop until it’s gone. Liam ended up eating a good meal. He ate dumplings, pork, and applesauce. As it was getting near 7:30 Liam started to say he wanted to go home. His routine is to be in bed around 7:30-8:00. He and his brothers continued to play with the cool toys Santa dropped off for them at Grandma and Grandpa McIlwee’s house. On the way home the boys were starting to fall asleep. I managed to keep them up until I got home. When they got in and saw mommy, they went nuts and wanted to show her the cool toys they got. Jill and I had plenty to do before bed to get ready for Christmas day. I had errands to run while she worked at home. She finally got the boys to sleep around 10pm!

Christmas day was an early start. Aidan woke up around 5:30 and went down stairs to see that Santa came. He loudly started yelling for everyone that Santa came. No matter how hard Jill and I tried to get them back to sleep, it didn’t happen. We were opening presents by 6am. It was really a great time for all the boys. They really enjoyed everything they got. Liam’s seemed like he was speeding the whole time. His stammering was horrible. Liam was literally vibrating at all the toys and excitement. I held him for a second and he could not stand still. As I held him his body was tense and his eyes were just going everywhere looking at all the toys.

Once we were done with presents, we were finishing getting ready for company to come over. Liam could not find his TV guide and that just heightened his anxiety. I found it and was able to calm him down about what was on TV. Liam’s stammering was horrible. It seemed like his thought processes were going a thousand miles and hour. That was how his speech sounded. Not only did we notice it, but Jill’s mom also commented to her that his speech was terrible. This all goes back to how Jill and I believe his medication is ineffective. We were instructed to increase his nightly dosage to 2 pills, but we have not seen any affect yet.
When company arrived Liam was thrilled. His cousins Katie, Bridget, and Jack, came over. He was excited they were there. The house was quite busy and the kids all played together very nicely. Overall Liam was very well behaved the entire day. His speech and occasional fits were the only rough parts. When the day was over Liam was very tired. He didn’t end up going to bed until 10pm. I sat with him upstairs to get him to sleep. As I held him I could just feel the energy in his body still. I rocked him to finally get him to sleep.

Overall Liam really was very good for the holiday weekend. There was so much going on at home and with the parties to keep Liam interested. The anxiety and speech problems still are a concern that we need to work on. Liam still does a lot of the same repetitive questions all day. Jill and I must have answered the same questions hundreds of time every day. We have been sure to explain to Liam what his schedule for the day is, what is on TV, and when. This has been helping each day. Liam has the next week off from school. He certainly has all kinds of new toys to play with! We’ll see how it goes….

Anxiety goes on

Today was another day full of anxiety for Liam. Jill said Liam whine, scream, and get anxious over anything. He was also very hyper and nervous all day. Liam was in constant motion no matter what. Jill said she did not recall him standing or sitting still for longer than a minute. It really made for a long day for her. Liam had a doctor's appointment for a skin rash. The doctor put a cream on Liam and he could not wash ot bathe for at least 6 hours, this was at 3pm.

When I got home from work Liam wanted to take a bath right away. He was clearly wanted to take a bath to help calm himself. He could not however due to the cream put on his skin. This was quite a challenge telling him he could not have a bath. Liam laid on the floor screaming, whining, and repeatedly asking me to give him a bath. This went on for about an hour. I made a video clip that I am going to try and have for you to see. This will give you an idea of what it is like. The video clip is only 2 minutes long, mind you this went on for an hour. I had to take Liam upstairs and sit with in the rocking chair and watch the Disney channel with him. He settled down with me after 45 minutes. He then went back downstairs and played with his brothers until bedtime. Once we got upstairs again Liam sat in my lap and fell asleep quickly. He was in bed by 7:45. We will see what tomorrow holds. We expect more of the same, so we’ll see.

Anxiety attack day

Today was simply one of the worst days for Liam in a very long time. Today he had his Christmas party at school. Jill was going to take the twins along just so she could be there for the party. It was a good thing she went. Liam’s school day started out by all the kids going to the school gym for a Christmas program where loud music was playing and kids were singing. It was too much for Liam as he was putting his hands over his ears. His teachers tried help him by putting ear phones over his ears, this was ineffective. The noise was just raising Liam’s anxiety. Suddenly someone dressed up as Santa Claus appeared on stage and that just scared the hell out of Liam. He immediately tried to run out the gym but the teachers saw him and went to him. As Liam looked around he saw Seamus in the gym and ran to him and crying and hugged him. Seamus made Jill and I very proud. He tried to console Liam. One of the teacher aides took Liam out in the hall to try and settle him down. He was physically upset over the person in the Santa costume. The whole Santa Claus thing is perplexing. Friday when he went to see Santa and tell him what he wanted Liam was excellent. He hugged Santa, sat on his lap, and told him what he wanted. It was cute. For some reason the Santa at the electricians Christmas party, at school, and pretty much anywhere else just scares the hell out of him. Liam gets so physically and mentally scared.

Jill arrived just after Liam had an anxiety attack at the gym. They were in Liam’s classroom for the party when in the hall they heard bells jingling and “ho ho ho!” Liam immediately began to get scared and had a death grip on her. He began to say he was done and wanted to go home. She managed to settle him down as his teacher closed the class door. Next thing they knew Santa peeks in the class window, Liam of course sees him, and began crying and screaming uncontrollably. Santa then came in the room and Jill had to rush him out the room. The whole way down the hall Liam was vibrating in fear. Jill did her best to try and calm him down. She said she has never seen him like this. While this was going on Aidan and Brendan were enjoying Santa and the party in the classroom. As Liam started to settle down Santa came out of the classroom and started jingling his bells again. This scared Liam even worse. Jill began to get scared as Liam began to hyperventilate. His body was rigid from head to toe. Liam kept begging Jill to take him home. Once Santa was out of sight she took him back to the room to get his belongings. Once in the room Liam started to settle down as he was constantly looking all over the room. When Jill got home with the boys she said Liam acted like nothing happened. He was in his element back at home, his safe zone if you will. He was running around playing like he always does. The other thing Jill wondered about was a woman was talking to her as if she knew Liam and her very well. Jill finally asked another mother who it was. The mother said that Jill was talking to a new class aide to help out with the one child who has raised concern among the other parents in the class. We were never notified about this change. We now have a call in to the school administrator who added this aide. Apparently other parents were notified, but somehow not us. We have questions about who this aide is, what her purpose is, and what her qualifications are. This is just another one of the issues we need stay on top of to ensure Liam is getting the proper care he needs.

Right after Jill got home she got a call back from Liam’s neurologist. Jill filled her in on what transpired at school and she agreed the dosage needed to be increased. We have begun to increase his dosage at night. In the end Liam will be taking 1.5 tables of Risperdal. Liam see his neurologist January 5th. Jill also told her about he has been holding his hands. We will try and make a video clip of Liam holding hands as he has been. We’ll see how this works.

When I got home from work Liam seemed completely fine. We had dinner, complete with his whining, screeching, and crying, over so many little things. Before I could finish my dinner, Liam was upstairs wanting to take his bath. When I tried to tell him to wait until I was done eating he began to get anxious and want it right away. I decided to let him bathe after the day he had. Bathing for him is something that helps him relax and center himself. As I got the water going in the tub, Liam wanted me to turn the lights off so he could bathe in the dark. Liam also likes the dark to help him relax. I let him stay in the bath for about 20 minutes. When he came out he did seem a bit more relaxed. He then began playing with his brothers by running all over the house and doing boy stuff. At bedtime he was still quite antsy and just felt tense. He sat in my lap and could hardly sit still. As he sat in my lap he told me about he cried at school today. I asked why and he said it was because it wasn’t the real Santa. He told me how he saw Seamus when he was crying. I just kept reminding Liam that Mommy, Daddy, and even his big brother Seamus love him and will take care of him. He just cuddled to me and that was all I needed. He eventually settled down and fell asleep. Liam is now on Christmas break. Hopefully this will give him time to relax.

HIGH Anxiety

The past several days Liam’s anxiety and control has been like he is not on any medication. Liam has not taken a nap in almost a week in the afternoons. He is up at 6:30 and goes non-stop until bedtime. When he is at home he races from one place to the next and does not stay with one activity for any measurable time. He will put a movie in the tv and then 5 minutes later be in the family room screeching because one of his brothers changed the channel from what he last remembered it. Jill and I then have to intervene and bring it to an end. This goes on repeatedly each day and it is tiring. Liam is also very impulsive right now. He can trash a room in no time and leave it. Getting him to clean it up is a complete challenge. He has also been extremely anxious about almost anything. His anxiety will run from what he wants to eat for breakfast to what is for dinner. He has not had been so anxious to the point he has a meltdown, but it they have been a series of small anxieties. Jill has left a message for his neurologist and we are just waiting to hear back from her.

This past weekend on 2 occasions his friend Kelly has come over to play with him. He was excited to see her each time. After she came in, I noticed each time Liam did not know what to do. I would tell him to go pay with Kelly and he simply looked lost. He had no idea what to do. I gave him some direction on what to do. Liam just asked her is she wanted to watch a movie. He would talk about his favorites to her, Toy Story, Charlie Brown, and Barney. The fact Liam could not initiate is one of those typical symptoms of Autistic children and their lack of social skills. I noticed that Kelly basically provided the direction on what they would do Liam would just follow along. I observed this Saturday and on Sunday tried to give Liam some ideas what he could do with Kelly. He really struggled with this. The look on his face was like he was lost. It was a look I won’t forget, it was sad. This has been the tone for the past several days. I don’t see any real break in it anytime soon. Jill and I will just continue to do our best to help Liam.

This past weekend was also a big weekend for Seamus. It was his last indoor soccer game. This game was also for the league championship. If the other team won, they would be tied for first. This other team had beaten us in our last match. Our team played their worst game against them. This time we talked with the kids before the game and told them what needed to be done. Seamus and a few other kids were excited to be playing in their first championship game. Seamus easily had one of his best games. He scored 2 goals and had one assist in a 4-2 win! One thing kids his age (6) don’t understand too well is passing and maintaining their position. I had talked with Seamus the night before about how important it was for him to play his position and be there when the ball comes out of a corner. His first goal came by him being in position. We yelled for him to stay in the center as the ball was in the corner. It came right out to him and he scored on a beautiful kick to the opposite corner the goalie was at. His next goal came on a breakaway at mid-field. He was again in position, the ball came out to him, and he ran down and booted it past the goalie. His assist was just as impressive. He was in a corner with the ball and we kept yelling for him to get it to Danny who had stay in the middle. Seamus got the ball out of the corner, then sent a beautiful right to Danny who just kicked it in stride. I was absolutely proud of him. The rest of his team easily played one of their best games of the year. Seamus’ buddy (and neighbor) Eli who played goalie had another outstanding game giving up 1 goal. In 8 games, the team gave up only 13 goals. Eli always played the first half since he is so good. I believe he only gave up 7 of the 13 goals. One game I know he gave up 2. That is a less than 1 goal per game average for him and that is outstanding. Seamus completely enjoyed his first championship. Way to go Seamus!

High Anxiety

This past couple days Liam’s anxiety has been really high. He has been very difficult for Jill to get to school. She literally had to carry him on the school bus and put him in his seat. When Jill has picked him up from school he has not been ok. We are convinced his medication is ineffective now.

Tuesday when Jill went to pick Liam up from school she saw the one teacher aide putting all the kids in the car. She did not see Liam. After the aide went in the building Jill went to see where Liam was. Jill looked in the door and saw Seamus and Liam strolling down the hall without any supervision. This really bothered Jill. If Liam was to have just run off, Seamus would not have been able to stop him. If Jill had not been there to pick them up for some reason, they could have just walked out of the building unnoticed. Who knows what could have happened after that. When Jill picked Liam up from school Wednesday she explained what she saw and the concern she had. The teacher was unaware that had happened and understood the danger it posed. She is going to address it with her aides.

Wednesday Liam was again difficult to get off to school. Jill had to again carry him on the bus to his seat. Liam also had another accident as he wet himself before school. The wetting has still been occurring, but we have been sure to have him use the bathroom more often. When Jill picked Liam up she talked with his teacher. They first talked about what was mentioned above and then about how he has been in school. What his teacher has noticed is Liam’s pace has been quite fast. He has been doing everything really fast. They have been using a pacer board to help Liam slow down and do his tasks one at a time. This just goes right along with what Jill and I think about his medication.

Liam’s play at home has been quite hyper and active. He rarely stays with one task, toy, or tv show at one time. He will start watching a movie, leave the room, return, and find one of his brother’s put something else on. He then began to have a tantrum because they changed the movie or the channel. Jill has continued to notice Liam holding his hands up at shoulder level with his finger bent in different positions. This is another typical thing autistic children do.

In the evening we took Liam to Aidan and Brendan’s Christmas program. When we got there the environment was just what Liam does not like. It was loud, crowded, and a lot going on. Liam right away put his hands over his ears and was saying he wanted to go home. This went on for a few minutes. Jill was able to calm him down. When the program started Liam stood on the seat next to us and sang along and gestured with the kids as they sang. It was really cute. Between programs Liam was ready to go and we had to keep him focused on what was going on. He was excited to see the twins come on. I was down on the floor level to take pictures and I could hear Liam calling for Aidan and Brendan. We were afraid if the twins saw me they would want not want to do their program. They saw me and waved. They both did a fabulous job.
After the program Grandpa McCourt took us all to Friendly’s for dinner. The boys all ate extremely well and enjoyed ice cream afterwards. Liam was very well behaved for the most part. He was still anxious as he waited for his food. When it arrived he at it all. As he was eating we also noticed him holding his hands at shoulder level with his fingers bent again. The entire time Liam ate he could hardly sit still he was almost in constant motion. Overall the boys did very well in a restaurant. By the time we were done, Liam was ready for bed. He went to sleep quickly when we got home.

High Anxiety

The past few days have been much of the same. Liam still does not seem to be phased after taking his medication. He still has frequent periods of anxiety and can not wait to do what he wants. Anytime he has to wait, his anxiety gets so high that when it’s not acted on, it leads to a fit, and even a meltdown. This repeats itself over and over. I’ve stated before how it wears on you. When Liam goes to bed it is a time to just relax and enjoy the peace and quiet.

The biggest story I can tell is about Sunday. Sunday Grandpa McCourt and I took all 4 boys to the electrician’s union Christmas party for kids. It is something that the McCourt’s have done since they were kids. It is really a nice time and all the little kids love it. The party is held at Cleveland’s Masonic Temple, a beautiful, old building on the east side. They have Santa Claus there for the kids to see and a show. The show had a magician, a cat trainer who had cats that did special tricks, and a dog trainer who had dogs that performed tricks. When Liam was first told he was going he recalled last year so vividly. He was scared to death of Santa there. The days preceding the party he kept saying how he didn’t want to see Santa. At times he would get very upset when it was talked about. When we got there we decided to let the boys see Santa. We walked in and Liam got extremely anxious. I walked up the steps with Aidan, Brendan, and Seamus and saw Grandpa McCourt consoling Liam that he didn’t have to see Santa. He was terrified. When he came up the stairs he clung to me with a death grip. I consoled him some more to settle him down a little. Grandpa McCourt took the boys to get candy canes as I stood in line. Liam and Grandpa would walk around while we waited in line. When we finally got near Santa, Seamus and the twins looked at Santa and refused to see Santa. It was actually kind of funny, but I wasn’t going to push it.

We then went into the auditorium to get seat for the show. While we waited Liam had to use the bathroom. I took him up to where the restrooms were located. The area was open and he was happy to just run around. We went a sat back down, for a few minutes. Liam kept telling me he was ready to go home, and that he was done. I had to keep working with Liam to settle him down. He really could not sit still. He kept climbing in the chairs in the row among his cousins Katie and Bridget who were there. I had to stop him a couple times from climbing any higher. When the show started Liam would pay attention for a few minutes then say he wanted to go home. It was back forth with paying attention, wanting to go, and then going to the bathroom.

When the show was over the kids waited in line and got to pick a stuffed animal and get a bag of candy and treats. The only hard part was for Liam. He just wanted to go. He was done. It was crowded, loud, and after all the anxiety he had he was tired. When we got in the van the boys couldn’t wait to get their hands on their treats. We gave them all 1 thing to eat on the way home. As we got going they all fell asleep for a much needed nap.

Later that evening Liam was still exhausted. He and his brothers all had a bath and were asleep by 8:15. It was definitely a long day for them all.

Call him flipper!

The past couple days have been busy. Liam has been his normal self lately. He has been all over the place. His stuttering is still an issue. One other thing we have noticed that we associate to his meds being ineffective is Liam has been wetting himself a couple times a day. When this has happened it is usually while he is doing something and doesn’t realize he has to go. When he does notice he went, he will go upstairs and change his clothes on his own. Sometimes he hasn’t even noticed he went. One thing we have done to try and circumvent further accidents is remind to use the bathroom. This has been somewhat successful, but it has been problematic when he has been at school. It has only happened a couple times, so Jill has informed his teacher what we are seeing.

Thursday Jill couldn’t tell from Liam what kind of day he had at school. When he got home he was a bit grumpy. As it turned out he fell asleep on the bus coming home. So he was probably still a bit sleepy. Earlier in the morning he wanted Grandpa McCourt to take him to swimming. After school he wanted Jill. Jill ended up taking him and it was a bit of a struggle at first. Once he got there he settled down and went off to swimming. Today Liam did something he hasn’t done before. He dove in the pool and swam the length of it, 40 feet! Liam’s teacher Miss Karen was thrilled at how well he did. Jill said Liam was beaming after what he did. He was treated to Burger King after his accomplishment. When I got home from work Liam greeted me at the door and was telling me what he did. He then sat down and ate his spaghetti dinner, minus the sauce. Liam had plain spaghetti noodles and ate quite a bit of them. Ick.

Aidan and Brendan seemed to be having a moment when I got home. As Liam was telling me about his day, Brendan was just finishing up crying for whatever reason. Aidan then started crying himself because of some issue with his pajamas. While Jill and I were trying to settle Aidan down, Liam and Brendan were arguing with each other over one touching the other. It was nuts the first 20 minutes I was home! Once they all settled down, Jill left for work, and I had to get the boys ready to go to my parents for Grandpa McIlwee’s birthday. The boys settled down as we got ready to go. They were all excited as they got to ride in my car. It is always exciting for them since they don’t get to ride in it too often. When we got to my parents the boys has fun playing with their cousin Jacob. The whole time we were there they were all good. Liam was starting to look tired as at times he just wanted to sit with Grandma or Grandpa. The boys all sang happy birthday to Grandpa and enjoyed cake and ice cream. It was late so we headed home. The boys all went to bed with no problems. Liam was clearly tired as he fell asleep on the way home.

All over the place!

Today Jill has seen enough with Liam to realize that the Risperdal and Prozac no longer are effective. She picked Liam up from school and his energy level was just sky-high. Jill had to take Brendan to the doctor since he has had a horrendous cough the past couple days. It was a good thing she did, Brendan is on the verge of pneumonia. He is now on medicine to help avoid that. Meanwhile, Jill had to take Liam with her to the doctor’s office. While they waited she said Liam was all over the doctor’s office and then in the room where they waited to see the doctor. Liam was talking non-stop the entire time. Once they were done at the doctor’s office they had to get Brendan’s prescription filled. In the drug store Liam was just on a tear. He would not hold Jill’s hand and was just extremely hyper. He knew where the videos were at and was repeatedly asking Jill to see them. He would also see the Christmas decorations and would just want to touch everything. It is hard to imagine Jill in the store with Liam alone, yet have Aidan, Brendan, and Seamus in tow.

When I got home from work Liam greeted me first by telling me Wife Swap was on tonight. He was racing all over the house. He would be in one room watching a video and 5 minutes later be in another room watching cartoons. When he would talk he would talk very fast. He didn’t really stutter either. When something wouldn’t go Liam’s way he would screech or whine about it. When I got done eating Jill showed me his gums. Liam has started picking his gums again. I noticed him do it last night and I had to hold his hands to keep him from picking anymore. His gums were sore and red like they haven’t been in quite a while. His medication clearly is ineffective. He has been on the same dose for each for about 6-7 months now. He has clearly undergone a growth spurt as some of his clothes do not fit him as well anymore. So we’ll see if Jill can get a hold of his neurologist. She has been very good about calling us back.

The fits go on, and a little reflection

The past few days have been filled with more of the same. It has been the repeated fits and tantrums Liam has when events do not go his way. These repeated episodes every day get very wearing on you. Jill and I both do our best to work with Liam. After several of these fits and tantrums each day it wears you down. By the end of the day we find ourselves not responding the way we should with Liam. We try to do it right, but at the end of the day we don’t respond well. We find ourselves yelling at Liam with a loud voice. Quite often Liam will put his hands over his years when we yell. It is when he does that I pause and remind myself to relax and calm down. It is not easy. As I was composing this, I was going back over all the different times in which Liam and I interacted over one of his fits. I can easily say I made a lot of mistakes handling him. Quite often the problem is Liam will want something while I am doing something else. He will then repeatedly ask over and over. His persistence on something he wants is absolutely incredible. It seems even trying to distract him lately hasn’t been working. The end result after Liam’s repeated requests is he goes into a tantrum. Ignoring hasn’t been working as well either. Liam will now stay right next to you. Quite often we end up giving in to him, finally get to what he wants, or we yell inappropriately. Right now I feel horrible for the ways I’ve yelled at him. I know better. I have to find a way for myself to be able to step back and make sure I am doing the right thing all the time. The stress dealing with him I find is a lot worse than the stress at work. At work, I know how to handle things in a controlling fashion. I can easily direct events to be handled the way I want them. At home it is another story. I know how I want things to be for Liam, I know how I’d like him to be. I can’t control that. No matter how hard I try and figure him out, I can’t. That just leads to a whole lot of frustration inside me. I know Jill feels it too. I think one of my best traits has always been a strong inner strength that has developed over my life. Right now, I am certainly using every bit of that strength.

It is becoming clearer to myself and Jill that the Risperdal and Prozac Liam is taking seems to have lost its effectiveness. Neither of us sees a difference in Liam after he takes his medication in the morning. We will continue to give him medication until he sees his neurologist next. I am thinking we should give her a call and let her know the situation. This way she can have some time to evaluate the situation and come up with a plan the next time we see her.

On a good note, Liam’s swimming class Thursday was another success. This class his teacher had Liam diving under water, swimming to the bottom of the pool, then picking up objects and bringing them up. Liam did this quite a few times. Jill said his teacher is really impressed with the progress Liam is making in the pool. The other task Liam had to do was float on his back. Liam seems to still be struggling in this area, but with time and practice he will get it.

Here we start a new week, the first full week of the last month of the year. It is hard to believe this year is almost over!