The meltdown arrived

Friday night at the fish fry went very well again. Liam was very well behaved as there were quite a few other kids there that he and Seamus knew. They all ate and went about playing with the other kids there. They colored and watched movies with quite a few other kids. Jill and I got to enjoy time with our friends and family that we knew there. It was another enjoyable evening there. By 7:30, Liam was ready to go. That is his typical bedtime and as part of his regular routine, he was ready. He told me he wanted to go home and take a bath. So we went home and did his nightly routine.

Saturday turned out to be a relatively nice day so Liam and his brothers all played outside. Liam was back and forth between our house and his buddy Kelly’s house. It was really nice to see Liam playing with Kelly. All afternoon they hung out together and were having a nice time. Once it was dinnertime we could see Liam was tired from his busy day. By 6:30 his anxiety was getting bad as he was repeatedly asking to take his bath. I got to him as soon as I could. by 7:15 he was sound asleep!

Sunday morning Liam seemed to be very high strung from the time he got up. His anxiety was higher than we have seen it in a while. Liam was all over the house going from one room to the next monopolizing the TV’s. Once I told him he could not watch every TV, he quietly slipped away. I found him in our room watching TV. I stopped that and he got very upset. Jill had to run to the grocery store and Liam kept insisting that he go. We told him he had to stay home and Liam’s anxiety went through the roof. As Jill was leaving a full-blown meltdown ensued. It was one we have not seen in quite a while. Jill had to slip out of the house as I restrained him and flipped the latch over the door so he could not get out. He then ran into the living room where he opened the window. I couldn’t tell if he was trying to get out, or just open it. I had to physically restrain him to close the window. Liam then began banging on the glass. I had to try and hold him back from the window to keep him banging on it. Liam was struggling with me the whole time. He then just laid on the floor and was kicking. I let him lay there and kick as I started to ignore his behavior. He was then insistent on kicking me. I would move and he would keep scooting across the floor trying to kick me. I then looked at him once more and said he needed to settle down and to come sit with me. He kept kicking the floor and screaming as I walked away. Five minutes later Liam came and sat with me in the chair. He was slowly settling down and about 15 minutes later he was asleep for a nap. He woke up 2.5 hours later and still anxious about everything. He ended up going to bed by his regular town around 7:30.

Monday wasn’t too good a day in the morning. At some point after breakfast, Liam had picked at his upper front gum and had bled a little. Jill noticed his teeth were blood stained. After she looked at his gums, she could see they were enflamed, and discolored yellow, hopefully not from infection. We will continue to keep an eye on this, he has become very discreet when he picks his gums. This morning Liam’s teacher noticed his gums were enflamed. She asked what the dentist or doctor had said about it. Jill explained to her how he does it and how discreet he is. It is clear that during the school day with all the other kids and activity going on that she is unable to observe him picking at his gums, and I’m sure unable to observe other things. Noting this observation from school really makes us wonder if Liam is really getting what he needs at Olmsted Falls. This is just another one of the many things for us to note and remember.

Lovin' his baths!

Liam continues to want his baths as soon as I get home from work. I have started to just give him his bath right away. This has allowed me to get changed while he is in the tub as it fills up. I then bathe him and get him ready for bed. I can then come down stairs and enjoy my dinner without his anxiety and whining. We just hope it is not going to start something later on. It has been working out for the better so we will just keep doing it as he asks.

This week at school Liam has had one of those weeks where we kind of wonder what goes on. Tuesday Liam came home from school and Jill noticed right away his sleeve had blood stains all over the lower right sleeve. Jill also noticed some drive blood on his finger tips. The front of his top gum line was very red and enflamed. She could right where he was picking. Wednesday Jill asked his teacher if they saw him picking his gums and they said they had not. Liam can be quite sly about it, that is for sure. Jill was sure to mention to the teachers to be aware that this has started again. Wednesday on the way home from school Liam pulled a sucker out of his coat and asked if he could have it. Jill asked where he got it and it came from the speech therapist intern. Jill gave it to him and Liam started telling her it was yucky, it was hot. Being perplexed by the flavor and how Liam was reacting to it, she asked for it. She tasted the sucker and gagged! She said whatever flavor it was, she couldn’t tell what it was. The only mistake she made was she threw it out. I would have liked to taken the sucker to the school and ask the therapist just what flavor it was that she gave him. It certainly wasn’t cherry, lemon, lime, strawberry, or even grape. Now giving a child with sensory issues a bizarre flavored sucker isn’t exactly a good idea. These 2 events this week just made us shake our heads and wonder if Liam is truly getting the help he needs at the school.

Thursday Liam and Seamus had not school. Jill ended up taking them all to Liam’s swim lesson. Since the boys were there, they could not be in the pool area. Jill had to occupy their time for 45 minutes as best she could in the lobby of Lifeworks. It was certainly no easy feat. As with all kids without something entertaining, they got bored and a bit difficult. They finally got out of there and all went to Burger King where they could burn off some energy in the play land, one of my least favorite places, since it was nothing but a germ breeding ground.

When I got home from work I didn’t even have my coat off and Liam was ready for his bath. He was bouncing up and down asking me to take him up for his bath. I went ahead and gave him his bath. I then ate my dinner in some peace and quiet. As I was eating, Liam started asking me to go upstairs and sit in the chair with him as we do at bedtime. I had to tell him no several times since it was too early. Liam ended up playing with his brothers a little and watching The Polar Express. Liam was definitely tired after his day of swimming. Liam was sound asleep by 7:15.

Friday we will be going to the fish fry again, so we will see how that goes. Hopefully it will be another successful time.

On we go

This past week Liam has continued to struggle getting over being sick. He has been on medicine and only has a bad cough right now. He is on a cough medicine for that and it is slowly working.

Liam went to school Tuesday for his Valentines Day class. The class was having a little party and parents were invited. Aidan and Brendan still weren’t feeling too well, but Jill didn’t have much choice and took them to Liam’s party. As soon as she got there Liam was ready to go home the moment she walked in the door. She told him not until after the party was over. He immediately got very anxious and would whine, jump up and down, and pull on her arm, to leave. She then had to try and settle him down. While she was doing that Aidan and Brendan were enjoying the party in the class. Jill ended up settling him down a little, but he would start back up a short time later with the whining to go home routine. The rest of his week at school went pretty well for him. Liam came home and was quite happy each day.

Thursday I ended up taking the day to work at home for work. I had work to do that I can’t get done during the day at the office. That afternoon Liam had swimming at 1pm and then a doctor appointment at 3:30. I was going to just stay home and work, but Liam was insistent that I go to his swimming. I ended up rescheduling a conference call I had and was able to make the time in the afternoon. I went to his swimming and he had another great day. I got to see him and his buddy Marcus working together and it was really net to see. The town them have really developed a relationship in a short time. When they saw each other they exchanged hellos and smiled. In the pool the instructor’s would use each of them as examples for the other. The big focus this lesson was on free-style swimming. Liam was just struggling with rotating his arms around and kicking at the same time. You could really see him having to focus and concentrate while Miss Karen would coach him as he swam. Considering this was only the second week of this lesson Liam did very well. When their lesson was done the young girl Addy who is after them was brought in the pool with Liam and Marcus. They were all very excited to be in the pool together. They took turns tossing a beach ball to each other for about 10 minutes. All 3 of them were smiling and having fun. On the way home Liam and I stopped at McDonald’s for a snack as that has become part of his routine. We had to hurry out so Liam could get him and get to his doctor appointment. That night Liam was asleep by 7pm, he had quite a busy day!

Friday we decided to take all the boys to the fish fry. We weren’t sure how it was going to go as the previous week was too much for Liam. To our surprise everything went wonderfully. Liam and his brothers had a great time. Around 7:30 as the fish fry was ending Liam was showing signs of being tired, it was past his bedtime after all! He really had a good night and that certainly for a nice evening for us.

Sunday we went over out friends Matt & Dani’s for a Daytona 500 party. We knew it was going to be a long day for Liam. As always we have to anticipate and plan that Liam will not be able to handle a social setting as the one we were going to. It turned out that Liam had another good day playing with the toys and other kids that were there. He still had a few moments where he wanted to watch videos while the race was on, but he easily understood it wasn’t going to happen. He kept busy the whole time we were there and by 6pm he fell asleep and slept the whole way home. It was quite a busy and fun day for all the boys.

Monday the boys were off from school since it was Presidents day. Jill didn’t feel like staying home all day so she took them to the nature center in Bay Village. Jill said the boys were very well behaved at the nature center. They got to see all kinds of live animals. Since they were so well behaved Jill took them to Dairy Queen. They had a nice lunch and came home. Jill said overall Liam was actually pretty good the whole time. He still showed moments of anxiety at times, but not as bad as it can get.

The only things lately we have seen Liam doing lately are things like picking his gums again to the point that they bled. He has also continued to want his baths right when I get home from work. He has even gotten so anxious during the day that he has convinced Jill to let him take a bath. Liam has had days where he as taken at least 2 baths. When you see him in the tub, you can just see his whole body and mind relax. That is his way to help himself calm down. We’ll continue with his baths since it is clearly a means to calm him.

Ridin' the axiety train

The past several days Liam’s anxiety continues as usual. Liam has those little moments of anxiety and then the ones that last until he is appeased. Liam continues to want his baths right when I get home from work, and sometimes even in the middle of the day with Jill. If you have been reading this blog for a while you probably have noticed how many of the posts sound redundant. Well, that’s how it is. It is a regular routine of day to day struggles. Every day we are analyzing and observing everything he does. Attention to Liam consumes nearly every waking moment. It has become rather routine observing him though. We’re always looking for changes in his how he copes with his anxiety behavior wise. For example, we’ve had issues with him picking at his teeth. This was just something he did as a result of his anxiety. Lately we have noticed he has not picked at his teeth so much. He is now chewing on his blanket, coat, or sleeves. I guess this is better than picking at his gums that has really done some damage. It is these kinds of self-destructive things that one was to watch out for with Autistic kids. Not all of them do it, but it is quite common. We’ll just keep on watching Liam and hopefully make a positive turn one day.

One thing that is kind of funny though are Liam’s eating habits. There are some foods that Liam just can’t stand. One is chocolate’s. Liam just does not like chocolate. Some meat’s he will not touch because of their appearance, or even their smell. Lately Liam has liked scrambled eggs. He used to not like scrambled eggs but suddenly he does. I made him some on Sunday evening for Dinner. I made them and as I was giving him them he asked for ranch dressing on the side. I reluctantly gave it to him and watched him as he dipped his scrambled eggs in ranch dressing. YUCK! He at them all though.

This past weekend Seamus and Brendan were sick on Thursday, Friday, and Saturday. They each started to get better Sunday while Liam and Aidan got sick. It seems like it is just a 24 hour bug they got. Seamus played his soccer game on Saturday and was clearly not 100%, but it was great to see him give the effort to play. Sunday Liam became very whiny and just wanted to be held all the time. This continued into Monday. When he wasn’t being held he would constantly repeat “Sit with me” to me or Jill. This would just repeat itself over and over. It certainly makes for a long day.

We’ll see what this week holds for us. As always we continue to look for progress and hope for the best in his development.

A return phone call

Today was another typical day of late for Liam with his anxiety. He did have his swimming today (Thursday) and he had another good session. Liam continues to do very well in his swimming. Each week he looks forward to going and he continues to excel. It is great to see Liam excelling at something. I know it sounds a bit negative, but I mean it in a positive way.

Jill got a call back today from Liam’s speech therapist. She and Jill had a nice talk. His therapist said she has not seen his stammering very much one on one, but she has heard it on occasion in class with other students. This we find a bit hard to believe. Liam stammers more than he talks clearly lately. He at times does talk clearly, but lately it has been a lot of stammering. Another thing that they noted was when Liam talks, his words all seem to run together. There is no rhythm in his speech. Hereisanexampleofwhatwemeanwhenallhissentencesruntogetherwhenhetalks. This got Jill thinking and she brought up that Liam does not sing. He only says little snippets of songs he knows. This has us thinking that maybe music therapy will do him some good. It also has us thinking that with Autism being a sensory issue, which he doesn’t know how to sing. It is like we have to teach him. Another thing that came up was that the speech therapist has a graduate student that has been working with Liam lately. Now the irritating thing here is, why we weren’t notified a grad student would be working be working Liam. What if we didn’t want a grad student to work with him? A surprise like that is just bothersome. Now Jill’s conversation with the therapist went fairly well. They talked about what else they were doing at school and what her plans are. I think we will make regular phone calls his therapist. The information Jill got today was informative and a big help. We should have this more often from the school, but we can’t leave it up to them.

Liam was thoroughly exhausted after his day of swimming. After his bath he just wanted to go to bed, at 6:30. I did my best to keep him up. As I was cleaning up downstairs it was quiet upstairs. I went back up around 7:15 and found Liam, Aidan, and Brendan, asleep. Hopefully they won’t be up at the crack of dawn tomorrow!

Anxiety and stammering continue

This past week has been another busy one. Liam continues to have his issues with anxiety. Each day when I would come home and eat dinner, he was ready for his bath. He would whine and keep asking to take his bath. He continues to have periods of anxiety throughout the day. We have begun to get used it I guess, but it still makes for a long day for Jill.

Liam’s speech continues to be an issue. Jill has a call into his speech therapist at school to talk to her about what is being done and how it’s going. We just do not see any progress at school. We need to get with the school and make sure that what they do at school is reinforced at home. For example, they use a pacing board for him when he talks to help slow him down. We should be using the same pacing board at home to help further his development.

Liam has also continued to have issues with wetting himself. We have discussed this with his neurologist. She had tests administered to rule out other medical problems. Right now we are thinking it’s the Risperdal. It just doesn’t seem to be a behavioral or medical issue. One thing we have seen is that since his medication has increased, so has his wetting, coincidence, possibly. I can’t say for sure, but that is how it seems be. Jill is going to put a call into his neurologist and her know how he is doing.

This past weekend my sister Sharon and I decided to surprise my parents on their 40th anniversary. We ended up catching a flight down to Orlando. We made arrangements with our Aunt Marge who my parents happened to be spending a couple nights with. We showed up at my Aunt’s house and gave my parents a nice surprise. The rest of weekend was a great time. It was really nice to be able to make my parents 40th anniversary one to remember!

Friday night Jill took all the boys to the Irish American Club’s fish fry. Her parents went along as well. Everything started out ok, but shortly after placing her order, Liam’s anxiety kicked in and he wanted to go home. He wanted to sit on Jill’s lap and kept whining he wanted to go home. She had to eat real quick to keep tending to Liam. Liam kept asking for his blanket to be put over his head. He kept telling Jill it was too loud. He has said things are too loud lately as well, the vacuum and the toilet flushing for example. Liam will put his hands over his ears when he flushes the toilet and when the vacuum is on. These actions are kind of new. The idea of a large crowd bothering him seems to have come back. He seemed to be able to cope with crowds the past year. With talk of St. Patrick’s day coming, Liam has already said he doesn’t want to go the Hibernians party because “it’s too loud”. Last year he had a ball there. We may have to go prepared for one of us to bring him home early.

So far this week everything has been much the same as stated above. It is a routine that repeats itself each day. Some days are better than others, but it is still a challenge each day.

A glimpse of the future?

This week has been much the same with Liam each day. He continues to have his moments of anxiety. Those moments repeat themselves over and over each day. Liam’s speech continues to be a serious problem. Whatever speech therapy he is getting at school is of no help. We Jill and I are going to review his IEP and have a meeting with his teachers. We both feel we haven’t seen any improvement since the beginning of the school year. We need to put more pressure on the school to do more for Liam. Jill and I just don’t feel he is getting what he needs.

Wednesday night we had the Autism Society of Greater Cleveland monthly meeting. A coordinator for the Outreach Services for the Cleveland Clinic Center for Autism spoke. Jill had met her before when she toured the Clinic. She was really a very good speaker who gave us some ideas. One of the things she talked was IEP’s. It was good to hear her pointers for things to look out for, and things to have in it. She stressed to make sure that goals in the IEP be measurable and observable. Metrics are the only way to measure progress. This has also prompted us to review the IEP to make sure that each of his goals can be measurable. By us attending the meetings we have gotten to know a Cleveland Police Officer who is very intelligent, very book smart. He has the ability to read laws and be able to interpret them in plain English. This has helped him write his sons IEPS and force the Cleveland school district to give his son the help he needs. He knows very well how school systems would much rather do just enough for your child than what is best. He has been kind enough to offer to review Liam’s IEP with us and give us some pointers on it. We are thrilled with his offer. Having another set of eyes look at the IEP will help us ensure we are doing the best for Liam. He is helping us an advocate. There are plenty of companies that offer advocate services, but of course, get ready to pay.

The president and vice president of ASGC and I talked about a few things coming up. ASGC is having its first fund-raiser Monday 2/6 as the vice president (Gus) is being a ‘celebrity bartender” at the Mill Road Grill in Brecksville. The president (Rory) has said he wants to start doing public service announcements for our group to help grow membership. He has a relative that is related to Bernie Kosar formerly of the Cleveland Browns. He would like to have him do the PSA for us and I think that’s great. We will be talking more about it later. Last April there was a rally in Columbus to push the state reps to do more for Autistic children. We are going to find out if this rally will take place again. If it does, we want to charter a bus to take a group from the ASGC there. I think it’s a great idea.

Now for the “glimpse of the future”. There were about 26 people at the meeting Wednesday. It was a great turnout. One thing we noticed was a gentlemen in his early twenties who seemed a bit nervous. After observation it was clear he was Autistic. He asked the speaker a question in the middle of her talk that was out of place. He asked “Are there any other Autistic adults here?” Clearly you can see his social skills were lacking, like all other Autistic kids, and adults. The speaker asked if there was anyone, that there wasn’t, then continued on. I thought she handled it well. After that he seemed very nervous and unsure of himself. A short while later he walked up the speaker and politely said “I have to leave, my aunt is waiting in the car, thank you” Everyone wished him well and he left. Rory was out of the room for a bit and I filled him in on what was going on. He followed the young man out and talked to him. The young man was looking for a social group. That is something we (ASGC) would like to have in the future, social gathering for Autistic adults, teens, and kids. It is imperative that they constantly work on their social skills.

After observing this young man in the room I began to think of Liam in his twenties. I began to wonder how will he progress socially? Will he be that obvious in a group that he is different? Will he even want to be in a group? So many questions and thoughts began racing through my head. It was actually quite upsetting to think about. I honestly began to worry what will happen when Jill and I are gone. Writing this was hard to do thinking about it again. I have to stop myself and keep my focus on helping Liam now. Keep him socially active, teach him what is socially acceptable, and teach him how to handle himself socially. Taking care of all this now will take care of itself later. It’s all about faith.

As a final note, please take a look at something I wrote about last week, it is a website for Dakota Bihn. Her mother is maintaining a diary on their progress. Click on the link on the right side of this page to find out more.