My oldest son is now 16. There are so many things that happen when a kid turns 16: driver's license, dating, job. Life seems to become a little more real. My son is becoming a little more of a man. This last week, Allen applied for a job. I was so excited to have him start to earn his own money, and have the ability to learn to budget and plan for his own expenses. I was excited to have him learn the life lessons that come with having his first job. We called the little bakery where he applied for the job, and they let us know that they had given it to someone else. I really had a tough time with it. I know a few adults with Asperger's, and most of them have a hard time getting and keeping a job. The challenges with social skills cause problems in the interview process, and can continue to cause problems if they get the job. We have been working so hard on Allen's social skills in his speech class. He has come such a long way, but I am not sure if it is enough. I know it is just one job application, but the challenges seem huge this week.
My 8 year old struggles to hold still in church. I have gotten to the point where I have lowered my expectations for him. I allow him to fidget, and twist in his seat. He blurts out constantly, and we do our best to stop him. We have a rule that he is not allowed to put his feet on the bench, or lie down, and he fights me constantly on those two things the entire time we are in church. I've let the fidgeting, and playing with items around him go for the most part. Yesterday, he was sitting near a woman in our ward who is a wonderful teacher. She has a class with some pretty challenging boys, and she does an amazing job with them. She does a great job of keeping the naughty behavior in check, and allowing the boys responsibility so that they feel pride in what they do. She really does a great job with them. She also has amazing kids. They are responsible, and kind. They are all leaders in the community. Yesterday, this woman got after Morgan several times. She seemed to constantly be getting after him for everything he was doing. Her expectations for his behavior were clearly much higher than my expectations for him. My own insecurities kicked in, and I felt like I was failing my kids by not expecting more of them.
I hate the guilt that comes with being a Mom of an Asperger's kid. I hate feeling that I am to blame for their struggles. I hate seeing them struggle so much.
Monday, July 1, 2013
Thursday, January 3, 2013
Rambling
Today, I had a friend come up and tell me that her son had recently been diagnosed with Asperger's Syndrome. It really brought back a lot of memories. I remember feeling so very overwhelmed when my kids were diagnosed. We shut ourselves off from the world once they were diagnosed, which probably wasn't healthy, but it worked for us for a while while I tried to wrap my head around the diagnosis.
Allen was diagnosed when he was in the 3rd grade. His Kindergarten teacher was amazing with him. She recognized that he was different from other kids, but she loved him, and she was very willing to include him and his eccentricities in her class. His first grade teacher was not as accomodating. I taught at the school where he attended, and after the first month, his teacher would talk to me daily, and let me know what a trial Allen was. She would tell me daily that Allen was the worst kid in her class. She demanded that we put him on medication. She made his life very hard, and basically let us know that he would most likely be expelled if we didn't medicate him.
We took him to a psychologist. She was a very unique lady. She always wore these very colorful turbans, and she conducted all of her sessions with her very large dog sitting at her feet. When she intervied Allen, she decided that he was possibly ADHD, but that his real problem was that he was simply very gifted, and the world just didn't understand him. She did medicate him, but his school teacher kept letting us know it wasn't enough. We continued upping the dose until he started showing clear signs of being overmedicated. That whole year was a very big struggle.
In second grade, we switched schools, and Allen had a wonderful, experienced teacher, and he made it through the year without problems, and unmedicated. We moved just before his 3rd grade year, and we ended up on year round schedule, on the track that nobody wanted. We ended up with a group of very rough kids, and a horrible teacher. She made Allens life awful, and we decided to put him on medication to try to help out at school. In order to get him medicated, we needed to get a psychological evaluation. In the evaluation, we found that Allen was on the Autism Spectrum. He was originally diagnosed with Autism, but as we have seen a few more psychologists, it has been changed to a diagnosis of Aspergers. As I have studied the differences, the Aspergers diagnosis seems much more accurate.
Once he got his diagnosis, things started making a bit more sense. We were able to get him on an IEP (an Individualized Education Plan) but his teacher was not willing to follow it. The kids in his class at school still bullied him mercilessly, and I found that having a diagnosis didn't change our situation at that time. I felt very hopeless. There was a charter school opening that was specifically for kids with Aspergers. I applied, and Allen was accepted. The school was 40 minutes away, and so I would transport him to and from school. I had another child in first grade at a local school, and trying to get everyone where they needed to be was very overwhelming. The School for the ASD kids was a new school, and they were having a very rough start. It felt like things were getting worse, not better.
At the same time, my pediatrician began noticing some troubling delays in Morgan, who was 18 months old at the time, and we began testing on him. After several months, it was determined that he was also on the Autism Spectrum. He was given a diagnosis of PDD-NOS. As he has grown, he seems very similar to Allen, and we are having many of the same struggles with him that we had with Allen. In getting both Allen and Morgan tested, I noticed several of the questions that they asked me also applied to my other two kids. I decided to have them tested. They both were diagnosed with Aspergers syndrome. As we have had additional tests, we have realized that Michael and Makenzie both have Aspergers, but it is a milder version than Allen and Morgan.
Once I got the diagnosis on all of my kids, I pulled them all out of school, and began homeschooling. I had had such a tough time with Allen, and I couldn't face dealing with teachers of 4 kids, and having them judge me and my kids at every turn. We needed a break from the world. We really enjoyed homeschooling. It was so nice to have them home where we could just be a family. My kids are each others best friends. They understand one another, and what each one of them goes through. They do each have very exact views of what they feel the world should be like, and those view don't always match up. They butt heads a lot. We homeschooled for two and a half years. I didn't like the reasons why I started homeschooling, but I enjoyed the experience. I eventually put my kids back into school. We have had some successes and some challenges, but overall, I think my kids made it through our homeschooling unscathed, and probably better off. We are now to a point where we know we need to deal with the world, and we can't hide from it. We are homeschooling again next year, but we are starting because we have chosen to, and not because we feel like we are being forced to. We still have a lot of struggles in dealing with the world in general, but that isn't going to change anytime soon. The challenges will become more and more important as my kids become adults.
I think that they will always have struggles. There will most likely always be things that are just more difficult for them. I guess my job as a mom is to help them learn and grow from those challenges (and learn and grow myself as we go through them) and help them maintain the good that is in them. There was one thing I did realize today. I wish I knew more about Aspergers. I can sympathize with people who get a new diagnosis, and I can let them know what it is like living with a kid with Aspergers, but I really don't know a ton about the disorder, in spite of all we have been through. I rarely have anything helpful to tell them. I still really struggle with dealing with 4 kids on the spectrum. I wish I had taken this opportunity to learn how to be successful in spite of having ASD, or maybe even because of having it. I wish I could be more helpful when people need help. I felt pretty useless today.
We took him to a psychologist. She was a very unique lady. She always wore these very colorful turbans, and she conducted all of her sessions with her very large dog sitting at her feet. When she intervied Allen, she decided that he was possibly ADHD, but that his real problem was that he was simply very gifted, and the world just didn't understand him. She did medicate him, but his school teacher kept letting us know it wasn't enough. We continued upping the dose until he started showing clear signs of being overmedicated. That whole year was a very big struggle.
In second grade, we switched schools, and Allen had a wonderful, experienced teacher, and he made it through the year without problems, and unmedicated. We moved just before his 3rd grade year, and we ended up on year round schedule, on the track that nobody wanted. We ended up with a group of very rough kids, and a horrible teacher. She made Allens life awful, and we decided to put him on medication to try to help out at school. In order to get him medicated, we needed to get a psychological evaluation. In the evaluation, we found that Allen was on the Autism Spectrum. He was originally diagnosed with Autism, but as we have seen a few more psychologists, it has been changed to a diagnosis of Aspergers. As I have studied the differences, the Aspergers diagnosis seems much more accurate.
Once he got his diagnosis, things started making a bit more sense. We were able to get him on an IEP (an Individualized Education Plan) but his teacher was not willing to follow it. The kids in his class at school still bullied him mercilessly, and I found that having a diagnosis didn't change our situation at that time. I felt very hopeless. There was a charter school opening that was specifically for kids with Aspergers. I applied, and Allen was accepted. The school was 40 minutes away, and so I would transport him to and from school. I had another child in first grade at a local school, and trying to get everyone where they needed to be was very overwhelming. The School for the ASD kids was a new school, and they were having a very rough start. It felt like things were getting worse, not better.
At the same time, my pediatrician began noticing some troubling delays in Morgan, who was 18 months old at the time, and we began testing on him. After several months, it was determined that he was also on the Autism Spectrum. He was given a diagnosis of PDD-NOS. As he has grown, he seems very similar to Allen, and we are having many of the same struggles with him that we had with Allen. In getting both Allen and Morgan tested, I noticed several of the questions that they asked me also applied to my other two kids. I decided to have them tested. They both were diagnosed with Aspergers syndrome. As we have had additional tests, we have realized that Michael and Makenzie both have Aspergers, but it is a milder version than Allen and Morgan.
Once I got the diagnosis on all of my kids, I pulled them all out of school, and began homeschooling. I had had such a tough time with Allen, and I couldn't face dealing with teachers of 4 kids, and having them judge me and my kids at every turn. We needed a break from the world. We really enjoyed homeschooling. It was so nice to have them home where we could just be a family. My kids are each others best friends. They understand one another, and what each one of them goes through. They do each have very exact views of what they feel the world should be like, and those view don't always match up. They butt heads a lot. We homeschooled for two and a half years. I didn't like the reasons why I started homeschooling, but I enjoyed the experience. I eventually put my kids back into school. We have had some successes and some challenges, but overall, I think my kids made it through our homeschooling unscathed, and probably better off. We are now to a point where we know we need to deal with the world, and we can't hide from it. We are homeschooling again next year, but we are starting because we have chosen to, and not because we feel like we are being forced to. We still have a lot of struggles in dealing with the world in general, but that isn't going to change anytime soon. The challenges will become more and more important as my kids become adults.
I think that they will always have struggles. There will most likely always be things that are just more difficult for them. I guess my job as a mom is to help them learn and grow from those challenges (and learn and grow myself as we go through them) and help them maintain the good that is in them. There was one thing I did realize today. I wish I knew more about Aspergers. I can sympathize with people who get a new diagnosis, and I can let them know what it is like living with a kid with Aspergers, but I really don't know a ton about the disorder, in spite of all we have been through. I rarely have anything helpful to tell them. I still really struggle with dealing with 4 kids on the spectrum. I wish I had taken this opportunity to learn how to be successful in spite of having ASD, or maybe even because of having it. I wish I could be more helpful when people need help. I felt pretty useless today.
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