The fits go on, and no luck with Social Security

The fits Liam has been having lately have continued the past couple days. Luckily he has not thrown up anymore. His fits occur several times a day. They continue to be when he wants to do something, go where Seamus goes, and when he is ready to go somewhere. When he has to wait he becomes very anxious and it leads to his fits. We try to avoid letting Liam know what we are doing, but that is hardly successful. Quite often I will be eating dinner and Liam is standing next to me asking if I am done while I have a plate full of food. When we try to tell him what sequence of events must take place, he becomes anxious and then has a fit. This is really making for a long summer. Outside his fits can be bad when Seamus goes to play with his friends. We can’t Liam go with Seamus as it is not fair to him. Liam does not know how to just play with the other kids. He is more likely to get to someone’s house and then follow whatever impulse he feels. This evening we went outside and Liam wanted again to go where Seamus was. He sat on his bike in the neighbor’s driveway crying he wanted to go with Seamus. This went on for 10 minutes. I then took Liam in the house to settle him down. It was not easy to do. He gagged a few times as if he was going to throw up but didn’t. He ended up settling down as I held him and just talked to him. The rest of the evening he was fine.

Today Jill went to see if we can get Liam Social Security benefits due to his disability. Jill made a phone call to the SS office last week and the woman she spoke with gave the impression we would qualify for some assistance. Jill went today and found out we don’t qualify because I gross too much. Gross. Hell, if I could only bring in what I gross I would possibly understand. They took no other factors into consideration to determine qualification. They told Jill if we had a family of 9, we would qualify. A family of 9, get real. I was completely shocked at that. Never mind taking into account that we spend $80 in co-pays per month just for Liam’s therapy, then another $60 for his medication, and then the amount of money spent on gas driving him around. We were simply hoping to get some relief and use that money to offset these recurring costs. It would be one thing we lived some glamorous lifestyle, but we don’t. This is where the frustration really comes in and makes you feel worn down. But hey, dwelling on negativity only hold you back. We will continue to keep doing our best for Liam and help him as best we can.

A fun weekend, but terrible fits

This weekend was a lot of fun with the Irish Festival going on. Jill and I went alone Friday and had a great time with other friends who came without their kids. We stayed until it closed at 11pm. The funny part of the whole thing was we were both tired and ready for bed at that time! So much for a big night out.

Over the weekend Liam’s fits have become more frequent than ever before. The worst part of it is when we can’t settle him down, he has a meltdown. The meltdowns the past week have led to Liam throwing up. Liam has thrown up on the carpets, himself, and our furniture. The main causes of the fits normally stem from Liam not being allowed to do what he wants, when he wants, and whenever Seamus goes somewhere and he can’t go. Jill and I are really trying to figure out ways to calm him so he does not throw up and work himself into a meltdown. We have tried redirecting him and holding him. This has not had any effect. Once he gets his mind set, there has been no changing it. All we can do is continue to document his fits and bring it up to his neurologist in the fall. This evening (Monday) after dinner, Seamus went outside and Liam wanted to go. Neither of us were ready to go out yet as we were still eating dinner. Liam began yelling, crying, and banging on our window. At the time this was going on our neighbor and fellow Sherwin Williams employee Mike stopped over to ask me about work. Liam normally is happy to see Mike, but this time he ignored Mike and just wanted to go out with Seamus. His loud crying continued so Jill took him out of the room so Mike and I could talk. Jill sat Liam and down and started to clean up the kitchen. Liam kept crying and sure enough, he threw up. Luckily it all stayed on his lap and was not too bad. This is going to take time to work through.

Sunday we took all the boys to the Irish Cultural Festival and all the boys had a great time. They were all well behaved the whole time. Friends of ours were there with their kids as well so it made for good company. After walking around and talking with friends and family we took the boys to listen to The New Barleycorn. They love their cd’s and listen to them often in the van. Due to rain early in the day the Barleycorn was moved into a cow barn that was HOT! We survived and the kids had a great time. Towards the end of the show the Barleycorn asked any kids that wanted to come up and do the hand gestures to the Unicorn song. As the song started Liam and the other kids recognized it and went down to the floor, but not the center right away. Once Liam recognized the song he went right out with the other kids. He did not know exactly what he was doing, but he was having a great time doing it. When Jill and I see Liam do this we both feel so good to see Liam do something like this. A year ago in a crowd like this Liam would not even want to be in that cow barn. He really makes us proud to see something so simple like that. The last Liam did something like this was last October at the circus. We were ringside in another environment that Liam has not handled in the past at all, especially with clowns, they scare him. Liam joined a bunch of kids and clowns in a ring doing a train dance.

By the nights end, the boys were all exhausted. When it was bath time Liam just talked all about singing the Unicorn song, Barleycorn, and the petting zoo Grandpa McCourt took them too. A fun day was had by all.

Another good day at school

It has been much of the same the past couple days with Liam and his anxiety and fits. It continues to be wearing dealing with it every day. Liam continues to do well in school at Middleburg. Today he insisted on wearing a SpongeBob Squarepants birthday hat to school. Liam wore it in class and his teacher really got a kick out of him. Another mother Jill knows thought it was quite comical as well. If Jill had made him take it off, he most likely would have had a fit and not want to go to school. Wearing it ended up starting the morning off on a positive note. After school Liam’s teacher said he had another good day. It is really great to hear how well he does in school, it really reinforces for us that we are doing the right thing.

Jill has met several other mothers at Liam’s school and has joined them at restaurants or a park to pass the time until school is over. Talking with mother’s going through the same situation of having a child with special needs has really helped Jill. Their conversations about life, raising their children, family & social issues, and even doctor experiences helps her feel at ease. She listens carefully and has learned a lot from the mothers. Jill has even shared her experiences and I’m sure it is a help to them as well. A group of mothers occasionally get together for dinner and invited Jill to come along. I think it would be great for her to go out and talk with mothers who better understand what she / we go through and maybe find some peace knowing that she is not alone.

Jill ended up meeting a mother of an autistic son who live a couple miles away from us. As it turns out, her husband works at Sherwin Williams in our research center. I have not met her husband, but I do know who he is. I’ll have to stop down and visit sometime. She and Jill have talked a lot and I think that’s great. She also has a set of twins that are 4 years old. She also has son around Seamus’ age and they have played together very well. It’s definitely a small world.

Liam had his Adaptive Aquatics class again today. The routine now is that after Jill take Liam to the pool, that she leave the pool area to help Liam focus. Jill is allowed to come in for the last 10 minutes of his class. It seems to work out better that way. Liam again had another excellent class. When Jill was watching he was swimming all over without assistance. Today Jill scheduled Liam’s classes through December. A few months ago, we wondered about having the money to cover the cost since insurance runs out in August. We ended up using money from the county for it. The money was originally meant to go towards a swing in the basement, but thanks to poor time management on an OT, we decided to wait until some time later to get the swing.

We’ll see how this weekend goes. It is the Irish festival this weekend and it is going to be a lot of fun. We are going without the kids Friday night and will meet up with friends. It always makes for a good time! Sunday we will take the boys. Last year it was quite difficult with Liam and the twins in a stroller, but this year it should be more fun. Liam has progressed so well in the past year, we don’t think the crowd will be as much a problem as it was last year.

Happy Birthday Seamus!

This past weekend was busy getting ready for Seamus’ birthday party on Sunday. Everyone came over Sunday afternoon and had a great time at the party. Seamus got a lot of neat toys. He really enjoyed his day!

Liam has been much the same with the anxiety and fits the past few days. Liam has been asking a lot of the same questions repeatedly about school, my work, where mommy goes, his birthday, Aidan and Brendan’s birthday, and where other family members are at. It seems like the same questions have been repeatedly asked over and over. For example, while Liam was in the bath tonight, he asked me 4 times if I had to go to work tomorrow. He then asked when his birthday was a few times. We have also been noticing him stuttering more when he talks. Quite often it seems like the words are coming out faster than he can think them. Liam has been receiving speech therapy at Middleburg. The therapist there believes he needs continued therapy with his speech. The contrast here was that the speech therapist at Olmsted Falls felt Liam did not need speech therapy any longer. Jill and I both feel more comfortable with what the therapist at Middleburg says. We will be sure to press the issue with Olmsted Falls in the fall.

Liam’s fits lately have been more out us not allowing him to go where he wants and do what he wants. He always wants to be with Seamus and play with his friends. Seamus goes down the street or even a street over. The problem is Liam does not know how to play with kids Seamus’ age. We do not feel it is safe for him to be out of our sight. We think he will just wander off or get into whatever he impulse he feels. It is a shame that this is the way it is, but we have a feeling it will always be that way, or that way for a long while. Liam’s fits last both short periods and long periods. Trying to soothe him or redirect him can be quite a challenge. This happens every night, and it can become quite taxing.

Liam had another good day at school. It always seems to start out with Liam being
anxious and needing to be coerced to go in. Once he gets in he really does well. It is a big change from how it went last year. When Jill picks Liam up she notices a difference in how his temperament is on the way home. Liam is quite chatty with Jill and talks all about what he did in school. While on the way home from Olmsted Falls Liam was often whiny and would have fits in the van on the way home. One of the other students in Liam’s class is also from Olmsted Falls. Her mother has said she even notices a difference in Liam when he comes out of school. She has even said her daughter has responded better after school. The whole environment at Middleburg is handled by specialists for children with special needs. The class environment is also smaller and that allows for more one on one interaction. We will see this fall how things work out.

This evening we had a bit of a scary moment as Liam, Aidan, and Brendan, were following me home from a neighbor’s house. I got in our drive and turned around to see Liam and Brendan standing on a driveway apron looking at the street as a car approached. I thought they were looking at a dog that was being walked across the street. After the car went by, Liam runs in the street and I immediately started looking for other cars and ran to him yelling to him to get out of the street. As it turned out Liam was picking up their Frisbee that somehow ended up in the street. Liam immediately grabbed it and got out of the street. I hope that the reason he did not go in the street right away was because he saw a car coming, but I am not so sure. I will choose to error on the side of caution this time. I hope it does not happen again. This just reminds me that even as Liam gets older, he still needs to be watched every moment.

A sign of things to come?

This week has been another busy week for Liam and his brothers. Playing outside is the one thing they love to do. Luckily they have several kids to play with in our neighborhood, so there is always something going on. Liam has continued to have his moments of anxiety and fits. The anxiety is the one thing we see repeating itself over and over. The fits have not been as bad lately.

Liam has continued to do very well at Middleburg Early Intervention Center. His teachers there know how to deal with him and it shows. Liam had a surprise Tuesday when his teacher from Olmsted Falls showed up for an observation day. Her presence really threw him for a loop. When she tried to talk to him, his current teacher and Olmsted Falls teacher easily noticed the confusion, and anxiety start building in Liam. Liam’s teacher from Olmsted Falls was not supposed to be there. Again, Liam’s routine was disturbed and his teachers could easily see it affecting him. His teacher from Olmsted Falls went on to something else to help Liam settle down. Jill and I were both thrilled that his teacher from OF took the time to visit Middleburg and observe what they do. We think that her taking the time to visit was a great step for her, Liam, and other future students.

Wednesday I began to notice something that really bothered me, and Jill when I told her what I observed. While we were talking with neighbors, I could see all the kids playing a few houses away. I could often hear Liam doing his “grunt” he does when he gets upset and angry. Occasionally I would see him run away slightly crying and upset. I began to pay closer attention and noticed several of the other kids getting in Liam’s face and yelling loudly and in an angry tone. This would cause Liam to react as I mentioned above with the grunt and crying. What was happening was the kids somehow found out they can get a reaction out of Liam by getting in his face and screaming angrily. This became funny to them all. Of course as a parent it is not funny. I actually became quite angry and wanted to holler at all the kids for what they were doing. As I was about to go intervene, Liam came running back to Jill upset after one of the older kids screamed in his face. I was seething. The kids just think it’s funny, but they don’t exactly know what they are doing. Jill and I talked to Seamus about what was going on and asked him to tell other kids to not do that. If they persist, he is to come and tell Jill and I. Seamus is going to be a fine big brother. I have a feeling in the future he may get into a few fights sticking up for his brother as they get older. It’s a sad thing to think, but I believe that is reality of it all.

Thursday Liam had another great day at school. He got to wear his bathing suit to play in a sprinkler at the school. Liam had a ball and was quite excited afterward. Liam may have had too much fun at school. When it came time to go to his Adaptive Aquatics class, he had a fit and did not want to go. The whole way to the facility Liam was screaming and angry because he did not want to go. Once Jill got him in the facility he began to settle down and was just a little anxious. Jill left the pool area to help him focus in class. Jill returned towards the end of class as she has the past few weeks and got to see Liam swimming diagonal across the pool to his teacher! Jill said it was amazing to see his teacher at the end of the pool and Liam swimming to her. She could not believe what she was seeing as Liam would swim under water, come up for air, swim more, and repeat. This swimming program has really done wonders for Liam. In our backyard, the pool collapsed after a heavy storm earlier in the week. I need to get more sand and build the base up again. Jill and I wavered about doing it as this would be the 3rd time we’ve had to fill the pool, all 2,300+ gallons. Liam loves the pool and based on how he does at his Adaptive Aquatics class, the cost of the water will be well worth it.

This weekend we have Seamus’ 6th birthday. It is going to be another busy weekend getting ready for the party. On his actual birthday the 13th, we took him and his buddy Eli to Dave & Buster’s for dinner and then to play games. With the meals Jill and I got the kids had $24 worth of tokens to play. They each had a ball. There so many games they were not big enough to play yet, but seeing them having as much fun as they had was great. One game malfunctioned on the boys so the staff at D&B gave them credits a CIA shoot em up game. They eventually got tired of it and Jill and I ended up playing it. It was quite addicting! If you like video games, go to Dave & Buster’s. They have quite few cool games!

The anxiety goes on

Liam has had a couple of better days, but his anxiety still continues to be more frequent. Thursday Jill had to again coerce and push Liam to go into school. He would cling his blanket and not want to go in. Jill would boost him along while his teacher would calmly try and talk Liam into the room. Once in the room and once activities were started he calmed down. His teacher told Jill that by the end of class Liam was wanting his blanket and ready to go home. His teacher also noticed when his anxiety was up, his body and hands would vibrate. This is something that could be a side affect of the risperdal. We are keeping an eye on this when he becomes anxious. It may also be a physical reaction to anxiety. Liam continued to have good days in class. As Jill observed, she believes the closer attention Liam receives at Middleburg helps him stay focused and remain calm.

Liam’s anxiety again showed at his Adaptive Aquatics class. Jill had to carry him into the changing room. Once there he got ready for the pool, but when it came time to start his lesson he got very anxious. Miss Karen then asked Jill and her mom to leave. This helps Liam focus on her only. Jill watched through a window as Miss Karen walked Liam around the pool talking to him and settling him down. Liam then dove right into his lesson and continued to do well. Jill said Liam at times would look anxious, and that was usually when Miss Karen was really working with Liam. By the end of the lesson Miss Karen invited Jill and her mom back in. Miss Karen then had Liam swim the width of the pool (~30ft!) under water, coming up for a breathe or two of course, and eyes open without his goggles! Jill was absolutely amazed at what she saw. We are both so thrilled with how well Liam is doing at swimming. I consider this achievement by Liam a huge milestone. I have observed Liam in our pool and when he swims, it is almost like our pool is not big enough for him. He easily swims from one end to the other, it’s a mere 12-13 feet across. How nice it would be to have a nice big in ground pool……!

Very anxious days

This past weekend Liam’s anxiety has been high for some reason, as well as his fits. They have been so frequent every day that really drained you. On top of his fits, Aidan and Brendan have been a couple of hellions themselves. Take all this together and it made for some very long days. Liam’s anxiety was especially bad when Seamus was not around. Liam would repeatedly ask where Seamus was at or what was he doing. When he would see Seamus leave he would want to go. Liam still cannot be outside alone. Jill caught him the other day following Seamus down the street. As she tried to catch up to him he just dashed across the street without looking. Liam’s fits would be last up to a half hour when he was not permitted to go.

On July 4th we took the boys to see Berea’s fireworks show. We wondered how Liam would act with the loud explosions, crowd, and other noise around him. Liam did very well and had a great time watching the fireworks. He would get very excited and run up to Jill and I tell us what he saw. A year ago in this type of social setting Liam would not have done well. He has definitely progressed well in this area.

We went with our friends and neighbors to see the fireworks too. The kids all enjoyed the show. The only thing that made it tough was the time spent waiting for the show to begin. The kids could barely sit still. The funniest thing (funny now) was Aidan and the other kids amusing themselves rolling down a small hill and laughing hysterically. Aidan got back up after a roll and just projectile vomited the chips, juice, and popcorn he had just finished! He already had his pajamas on and had no change of clothes. He ended up just in his diaper the rest of the evening.

Today at school Liam had another very good day. His teacher Miss Bonnie has been dealing with autistic children for many years. She has really picked up on Liam’s quirks and has made great adjustments to help him. She too has noticed Liam’s anxiety flare up and has been able to redirect him before it gets bad. Miss Bonnie also noticed slight tremoring in his hands. This is something Jill noticed last year. We have not seen it as much lately. Jill has noticed Liam has quickly adapted to his school environment. She thinks the big difference is the teachers at Middleburg are trained for children with special needs such as autism. Jill stated Liam’s teacher at Olmsted Falls was interested in observing at Middleburg. She will contact her and let her know what the schedule is. Jill and I are encouraged by her interest. Jill and I are very happy to see Liam doing well at Middleburg. We really hope that this well help prepare him for a successful school year this fall.