Wednesday, June 2, 2010

Bedtime Battles

It's 9:52 PM. My alarm is going to go off in exactly 6 hours. My day starts at 4am so that I can do some chores in the house before I leave for work. I work 7 am - 3 pm so that I can be home when my boys get off the school bus. At this time, I refuse to put my boys in the after school program because we had a bad experience a couple of years ago with a teacher who just doesn't understand the inflexible thinking of my son who has Aspergers.

Just before Jared went to bed he told me that he doesn't know how to go to sleep. He said he just can't relax to be able to fall asleep. The product of ADHD I guess. I responded to him that he knew how to go to sleep when he was a baby, however, I had to swaddle him tightly in his blanket for him to fall asleep. I swaddled him until he was almost a year old. I thought I was so good at swaddling; little did I know that I had a child with an Autistic Spectrum Disorder and who had a nervous system that preferred deeper sensations. Things seemed so simple back then.

It's 10:02 and the house is quiet. I think the consequence of not being able to play on the computer before school did the trick. It's funny; when the kids were small, I did not try to tiptoe around the house when the kids went down for bed, and now it seems that's what I have to do so that there aren't as many distractions in the house for Jared to be able to let his mind go in order to relax and eventually fall asleep.

Saturday, May 29, 2010

Summer Camps for Aspergers

I'm reading "The Best Kind of Different" by Shonda Schilling. It is a story about Shonda's family and her son who has Aspergers. Shonda's son is a few months older than my son who has Aspergers and all of her challenges that she talks about in her book are my challenges with my son. I think the one thing that is different with Shonda's situation is that her son likes school. My son hates school and cries every Sunday night because he has to go to school.

In the book Shonda talks about how she found this wonderful camp for children with Asperger's in the Massachusetts area where they help the kids with social situations and how to deal with stress and anxiety. I wonder is there a camp like this in the Western New York area and if there isn't how do you start one.

I remember last year and the troubles that Jared had in the summer day camp that he goes to and the challenges that Jared has to face because the counselors don't understand Aspergers. If anyone has any answers, please respond. We need more of these camps and support for our children.

May 29, 2010

I haven't written in a while because I really didn't think anyone was reading my blog, but I've received several emails from people who have seen my blog. Things have been crazy. Jared is doing pretty well, but having some problems in school. Homework is very challenging and this year has been tough. Jared is finishing his year in second grade and is moving into third grade which is very scary for me. His reading scores are low and I've arranged for him to have his ELA tests read to him and extra time for test taken on his IEP. I just found out that his IEP will follow him through high school and some colleges. The trick is finding the right college that recognizes IEP's, but we will cross that bridge when we come to it. I'm looking forward to the summer. Right now we are revisiting Jared's fear of bees. I hope all is well for everyone out there, and if you see this, please let me know. I will try and continue doing daily blogs!!


Saturday, November 7, 2009

Such is the Life of an Aspergian Parent

Hello All,

I haven't posted anything in a while. The school year has started and it has been hectic as always. Things that have recently occurred are as follows: the boys started school and homework is killing us. They both were recently sick for a week and we are still trying to catch up on homework. My husbands mom and Aunt went with me to a visit to our Psychologist and basically the summation of the family is: I am the problem to my son's negative behavior.

Parenting an Aspergian son who on the surface appears normal is challenging as hell. Why do you ask? Because EVERYONE thinks they are an expert and all my problems can be solved in a matter of minutes because all I have to do is get with the program. I mean they don't have the problems that I have with their children because THEY are assertive and take a hard stance on misbehavior. NEWS FLASH: for the most part, my son doesn't misbehave. For the most part when he is not agreeable, it is because he is on a sensory overload and to everyone who doesn't deal with this 24/7 it appears to be stubbornness and misbehavior. If I did the things, as a parent, that everyone thinks I should do, I will probably be successful in one thing, namely, having my adult son depressed and on anit depressants as an adult as my dad is because nobody understood him as a child.

Such is the life of an Aspergian Parent!!

Wednesday, September 16, 2009


Ok so here is the skinny.......I've been seeing a psychologist with my son Jared who has been dianosed with Aspergers for about 2 years now, and I've always wanted my extended family to go to some of these sessions with me and so far they haven't. I recently sent out an email to everyone (my husbands family and my parents) to extend a written invitation to them about going to see the psychologist with me because I'm really tired of getting bombarded with "I think you guys need to do this, You guys are pushovers. Jared is manipulating you. He doesn't misbehave because of Aspergers, he misbehaves because you are a pushover", and my favorite most recent, my sister in law called my husband to say that Jared is worse when he is around me!! Ughhhh.

I received a call last night from my husbands Aunt telling me that she and my mother in law would like to go to the next session with our psychologist which initially I thought was great, but now I'm getting nervous about it because I fear that they are going to go with their guns drawn and pretty much explain that I'm a pushover as a parent and causing my son harm. I'm trying not to think about it and just letting things unfold as they should, and I'm hoping that my psychologist will support me and the things that I've been doing with Jared. The appointment is next Tuesday which is the 3rd anniversary of my brothers death who was an undiagnosed Aspie. I'm really hoping this session improves things rather than makes things worse. I will keep you posted! No pun intended. ;)

Tuesday, September 1, 2009

Calling all Girls!!

The more that I read about Aspergers the more I can relate to it. I just went to a seminar about working in the work environment and having Aspergers. The woman who gave the lecture is an undiagnosed Aspergian. She realized that she had Aspergers when she was reading up on it to help her boyfriend who she felt had Aspergers.

The Aspergian personality characteristics that she described in her lecture were as follows: Focus/Diligence when it comes to their work so much so that they neglect their needs, extreme pride in their work, desire to please and be accepted, independent, unique thinking, high fluid intelligence (ability to infer), visual 3-dimensional thinking, high attention to detail, honesty, and logical decision making. I read down this list and I have every characteristic. I seldom take a lunch because I get too involved in my work. Even at home during the weekends I will get busy with my housework and I don't eat until late at night. I am a severe people pleaser. I have a high attention to detail. I've spent 5 years in public accounting and the general consensus is I spend too much time on the finer details, I am very honest, but I don't think I say things people don't want to hear. The other characteristic that Aspies (hope you don't mind the term) have is literal thinking of which I am very literal. My mom gets upset with me because when she tells me a joke, I don't always get it because I think too literally.

People with Aspergers (according to the lecture) have a high rate of unemployment. According to the lecture, 85 - 90% of Aspergians are unemployed either because they quit or are fired due to a social issue. Over the past 5 years, I've had 3 public accounting jobs. The first I left because I felt that a coworker was sabotaging me, the second I left because I was being bullied by a manager (another vulnerability of Aspies) and the third I was laid off because of economic reasons but one of the comments was that I paid too much attention to detail.

As a kid, I don't remember having sensory issues, but I did have a temper and I can remember my dad always getting upset with me due to my crying fits. I didn't play with dolls like other girls, but I loved my stuffed animals. I would line them up on my shelves and count them. I loved playing with boys because they were more fun and I wasn't fond of playing with dolls and hop-scotch and jump rope. I never seemed to fit in with girls.

As an older kid/adult, I am obsessive in my thoughts. My husband gets frustrated with me because I tend to obsess or get stuck on things I'm trying to work out in my head. I have OCD tendencies, but I wonder if I've learned these from my mother. I hate it when things are not in their proper places and when my house is really in disarray, I can feel the turmoil internally. Physically I have had panic attacks when my anxieties are high and I suffer from IBS (irritable bowel syndrome) which I find is helped by drinking water.

I often wonder if I do have Aspergers did I receive it genetically or is it learned behavior especially since I don't seem to have sensory issues, however, I can tolerate extreme exposure to heat. My husband hates it when I take a shower because our bathroom becomes a steam room and when we first moved into our house and were getting our fire alarms set up which has a direct link to the fire department, I set off our fire alarm because of my hot showers. As I was finishing up in the shower, I heard the sirens and by the time I got out of the bathroom, 6 firemen were running up my stairs to the bathroom to check out the status of our "fire".

So, I don't know....Aspergers or not? Did I learn certain behaviors because I believe my dad is undiagnosed as well as my brother? What will we find out about Aspergers in the next few years? Is it a disorder or a personality like Type A??? Those are the questions, and I'm interested in your comments. Please share. Thanks. :)

Tuesday, August 25, 2009

Behavior Problems?

Yesterday was a stressful afternoon. I've been seeing a Psychologist with Jared since he was in kindergarten. When Jared entered kindergarten, his teacher felt that Jared had a neurological disorder because he had a hard time paying attention. After months of testing with the school, it was discovered that Jared did have an attention disorder and he was on the Autistic spectrum. I wasn't really sure what that meant because Jared seemed to be a normal boy. He didn't display any of the autistic tendencies that I was familiar with. He seemed to be affectionate and he was pointing by the age of 1,etc. so Autism didn't make sense to me. I had a lot to learn.

I started seeing our child Psychologist about 2 years ago. Through his analysis, Jared has been diagnosed with Aspergers and ADHD. He is on Ritalin for his ADHD. I was on my way to pick Jared up yesterday when I got a call on my cell phone. It was the camp director of the day camp Jared attends. The director was explaining that Jared had bitten someone. Apparently, Jared had a ball that a boy was trying to take away from Jared and Jared didn't want to give it up. One thing led to another and Jared ended biting the boy and when the boy tried to pull his hand away, Jared wouldn't let go and left marks in the boys hand.

Jared is not a malicious boy and to me (not to condone his behavior) this seemed like Jared was extremely frustrated. I know that neurotypcial kids tease him because his behaviors are different. Kids on the spectrum are in fact bullied, and there are problems with bullying at the camp because there was a notice in the flier that bullying would not be tolerated.

When I got to the camp, Jared was sitting in the office on a chair, and when I asked him what had happened, he did admit to biting the boy and I explained that it is unacceptable behavior to bite someone, and as the director and I were talking with him, tears welled up in his eyes and he said, "Nobody likes me. They tease me and don't include me. They tell me I'm gay." The counselors response to this was, "Jared, now you know that isn't true. People do like you. They just get frustrated when you stand too close to them and when you put your hands on them. They push you away because you stand too close." I then explained to the counselor, this is a prime example of the social disorder. Neurotypical children learn through social interaction that standing too close to someone is invading that persons personal space and people on the autistic spectrum have a deficiency that doesn't allow them to learn on their own about personal space. I told the counselor that we were on our way to see his Psychologist and this incident would be a main topic of discussion. I was annoyed by the fact that when Jared was trying to explain how he felt, it was discounted by the counselor. Instead of trying to understand Jared and trying to figure out who is calling him gay, the counselor chose to tell Jared that the way he felt simply wasn't true. I believe that Jared is teased at the camp and his frustration level was high yesterday and he succumbed to the frustration and bit one of his tormentors.

After our psychologist talked with Jared (alone) about the incident, the psychologist told me a story that Jared had told him about. There was a day when a group of kids that Jared was sitting with at lunch tricked him. Jared is terrified of bees and according to Jared, these kids had a half eaten sandwich and let it sit out until bees were attracted to it and then tricked Jared into going near the sandwich so that the bees would follow him. I believe these kids learned that Jared is afraid of bees and thought it was entertaining for them to watch Jared being tormented by the bees, and then you wonder why he defends himself albeit not the best choice but given the fact that he is 8 and emotionally immature, his choice made sense to him. We have a lot of work ahead of us.

I get really frustrated in trying to explain Aspergers to people because they just want to boil Jared's behavior to defiant behavior instead of what it truly is. Jared has a learning disability when it comes to social rules. I'm afraid that this "bad behavior" might end up being a self fulfilling prophecy for Jared. I'm afraid in his mind he is going to say, "What is the use? I'm trying my hardest to be good and fit in and have friends and when people hurt me, it's discounted and alls anyone sees from me is bad behavior, so I should just be bad."

Jared and I have had the conversation of why biting is a bad choice, but I also understand that life in the Neurotypical world is frustrating for an Aspergian just as it is frustrating for me to try and educate Neurotypicals about Autistic behavior. Neurotypicals just don't want to hear it!! I feel like a salmon trying to swim upstream against the tide.