I havent written on the blog lately. The last time I wrote it was about Toms appointment at the doctor, his current medical position and the decision about cutting  back on the meds.  Toms doctor wants to get him off the Paxil (anti depressant) and then increase the Lamictin. She says Tom is no longer depressed, but his Eeg is still abnormal which can be treated with an increased dose of Lamictin,

I have followed the doctors advice in cutting back on the anti depressant meds.  This hasn’t been easy. On 22 Feb we started the weaning off process. He was taking 40 mg and is now down to 20. The doctor did warn me of the serious side effects, and I can confirm that these havent been pleasant. When we decrease the medication Tom has spent days in bed unable to get up. Sometimes I dont see him at all for most of the next week, as he says all he can do is sleep. At the end of this month he hopefully be able to cut down to  5mg. From there on I hope it will improve.

Frequently Reported Symptoms of Paxil:

intense insomnia
extraordinarily vivid dreams
extreme confusion during waking hours
intense fear of losing your sanity
steady feeling of existing outside of reality as you know it (referred to as  depersonalization at times)
memory and concentration  problems
Panic Attacks (even if you never had one before)
severe mood swings, esp. heightened irritability / anger
suicidal thoughts (in extreme cases)
an unconventional dizziness/   vertigo
the feeling of shocks, similar to mild electric one, running the length of your body
an unsteady gait
slurred speech
profuse sweating, esp. at night
muscle cramps
blurred vision
breaking out in tears.
hypersensitivity to motion, sounds, smells.
decreased appetite
abdominal cramping, diarrhea
loss of appetite
chills/ hot flashes

Its difficult to track Toms progress and how the cut back in medication seems to be effecting him. There are some days that I think he is worse and some days when he is better. I notice his various tics, and stims (see You Tube video for explanation)  and wonder if he is better. I think we will know when he is finally off this medication. What is scary for me is how long this might take. In all likely-hood this could take 4 to 6 months. During this period Tom hasnt been fully functional. Sometimes Tom helps me with shopping. Last month I sent him in to a shop to get a few groceries. I think the list contained 5 or 6 items and it took him half an hour. I started to get concerned and when he returned he said he couldnt find the items on the shelves and everything was a blur. He was quite upset about this, but we read up on the side effects and now he doesnt attempt to do anything if he doesnt feel up to it.

The good news though,  is that a student doing her doctoral studies in Aspergers is looking for 6 young adults and has developed an intervention program to assist in helping them to find their social niche and also employment. She is offering the program free of charge and hopes to be able to find employment and training for at least one of the participants. The company will also be exposed to aspergers and will be able to see how it affects people which will be great too. I immediately contacted her and she has placed Tom in the group. I will find out this coming week more of the details. I am so please about this. What’s even better is that Tom is very keen to be included. Although he is happy at home he does need to have something to look forward to in life. Its been an ongoing, underlying concern for us. I wish I could do more, sometimes I feel I have failed him, but I also realise its harsh criticism in the situation. I dont know how the program will work out, I am sure she doesnt work miracles, but anything positive that comes from this is just going to be fantastic for all of us.

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Feelings about treatment

Yesterday was Toms 21st birthday. I can’t actually believe where the time has gone. It’s a cliché, but it’s true “the time has flown”.  As I look back over the past 21 years not only do I see how Tom has changed, that’s evident, but I see how I have changed.  What hasn’t changed is Toms eeg, its still abnormal. So we have gone from perhaps coming off the meds to a possible increase!

I had a comment on the blog last week about treatment and I just wanted to emphasize that although comments on treatment of Aspergers syndrome and Autism are welcome, this blog is not specifically about treatment or cures, it is about acceptance.  While this may seem a negative concept to new parents and to parents of young children, it can also be a very positive shift. I have not found any websites which explore the feelings parents may have about their children’s “condition”. It seems to me that often as parents we have to put our feelings behind us as we take our children from doctor-to- therapist etc.

Comments welcome.

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Aspergers and medication

My son Tom (not his real name) aged 20, has been taking medication on and off for many years. There is no medication that “cures” or “helps” Aspergers but symptoms such as difficulties in concentration, depression, and other related problems may be helped with medication.

Initially I was very much against medicating Tom, but in Grade 3 some concentration problems became evident. Tom had a full assessment and I was advised to put him on Ritalin. I decided to investigate the options before making a decision either way.

It was interesting for me because all the parents who “capitulated” and medicated their kids only had positive things to say about Ritalin. All the negative feedback I received was from parents who hadn’t tried Ritalin with their kids. They had decided to battle it out the “healthy” way. The overwhelming majority of people I spoke to who medicated kids with Ritalin for concentration difficulties were positive and felt it was hugely beneficial. I decided to give it bash and although Tom seemed quite intense in the beginning, occasionally came home and had some tantrums  the results were mostly positive. The doctor said the “tantrums” were caused by the drop off of the medication. We tried the slow release Ritalin and that was better. For a year or so Ritalin seemed to be beneficial.

Tom had developed a few tics. As he talked he touched objects in front of him, then touched his legs, touched his arms etc in a repetitive manner. He didn’t seem to be conscious of this at all. I discussed this with the doctor, who said maybe the tics were always there and I hadn’t noticed them before. I did think it was a possibility so I ignored them as far as much as I could. One day sitting in the car with Tom, I realized that his tics were becoming worse and I needed to address them. I spoke to the psychiatrist who said Tom also seemed anxious, had lost weight and was battling to sleep. She gave me a prescription for sleeping pills and anti depressants. After a lot of thought I decided not to give Tom any other medications and I took him off Ritalin as well. I didn’t tell anyone and no one really noticed any difference in his behavior. We continued without any medication for a fewyears and although his concentration wasn’t great there didn’t seem to be a huge concern. Tom passed Grade 7 and went to a new school. He was really happy there, as it was a small environment.

The difficulties started in Grade 8 when the school took on board a new system and changed the class to a home school based curriculum and the kids were left to work on their own with minimal supervision. Because Tom was always a quiet boyno one suspected he wasn’t doing any work until it was too late. He didn’t pass the exams at the end of the year. The following year the school decided that they couldn’t manage the high school class anymore and more or less closed the class. I was forced to move Tom into another “home schooling environment”. The principal was quite happy with his progress, but I wasn’t happy to let anything slide. I suspected Tom might be depressed, he hated the school and the other kids and it was obvious he was battling to work to his ability using this system. My GP recommended we try Strattera for his concentration difficulties which seemed to be the most concerning. Before long Tom was really depressed and my GP decided that we take him off it and treat the depression. Tom started on Paxil which is an anti depressant. Almost immediately I could see improvement.

At the end of the year Tom and I decided he should move schools. He wanted to get his  matric and I found a school that was highly structured and had a good reputation for getting results. I had never told any of Toms teachers, or the schools he attended (in total he went to 4 schools, 1 primary and 3 high schools) that he had Aspergers syndrome.  I would tell them he had ADD, some learning difficulties and was a very quiet boy who didnt like to socialise. When the principal interviewed Tom and I at the new school I gave the principal a description of Aspergers but not the label. I doubt that Tom would have been accepted at many mainstream high schools with the label Aspergers.

During the year the school picked up his learning difficulties and they wanted him to have an assessment with an Educational Psychologist. I also decided that he needed to see a specialist. I took Tom to a psychiatrist who recommended he have an EEG. Brain cells communicate with each other by producing tiny electrical impulses. In an EEG, this faint electrical activity is measured by putting electrodes on the scalp. The doctor said that many kids with Aspergers had “dodgy” EEG results. I am not going to go into the medical details in this article but what I mean by dodgy is “not normal”. The results came back and Tom’s results indicated a problem in the parital lobe. The doctor recommended an MRI  scan to eliminate anything physical like a tumor etc which we did. The MRI did not show anything out of the ordinary but to normalise the brain function Tom was put on Lamictin.

He has been on this medication now for 3 years or so. It certainly helped with normalizing mood and concentration. Tom passed matric (not without many ups and downs) and has been out of school for a year now. At a recent checkup the psychiatrist suggested he have a further EEG and see if the brain function has normalized. We are currently awaiting the results which will show if he can come off the medication. I am quite keen to get these. I  would love to see how Tom is un-medicated.  He is also currently on a second gap year, is not stressed and it is the perfect time to take him off all meds.

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General Info about Aspergers

A few years ago hardly anyone had heard about Aspergers Syndrome but recently there has been a lot of exposure about it in the media. A non medical way of describing children with Aspergers is to say they have “mild autism”.    Most children with Aspergers have a normal to high IQ.  The difficulty is that although they have a good IQ  they suffer with profound social difficulties. They find social interaction extremely difficult due to an inability to “read and interpret” non verbal interaction. Nonverbal language is often narrowly defined as gestures and body language, but this is a simplification.

In addition to gestures and body language, sometimes what we don’t say can be ” nonverbal”. For instance, not answering a question could communicate many things, like not knowing the answer, or not having actually heard the questioner, or dismissing the question as inappropriate or not worthy of answering. Often most of our communication is not the words we use but the way we use them and the expression or tone of voice. Just how tough is it to live with Aspergers? Evidence suggest that between 70% to 90% of all communication is non verbal, so the answer is that living with Aspergers can be a real disability. Very often the person or child with Aspergers appears normal , so it is only during conversation and interaction that you pick up there is something odd about the interaction. One may be left feeling a bit confused about the child or adult with Aspergers. Aspergers kids can be teased and bullied for being weird and strange. Sometimes Aspergers kids are called geeks!    People with Aspergers also tend to become obsessed with topics that interest them. Common examples of this in children is obsessively talking about and repeating facts about dinosaurs or TV programs. The following famous people have been thought to have aspergers – Bill Gates, Albert Einstein and Vincent van Gogh to name a few.

Recently on Sky News there has been much discussion about a man, Gary McKinnon, who has been diagnosed with Aspergers and has been accused by the US government of being responsible for hacking into 97 government computers belonging to organisations including the US Navy and Nasa. The US government is trying to extradite Gary so that he can be tried in the US.  Gary McKinnon claims that he was looking for evidence of extra-terrestrial life. If you would like to read more about Gary McKinnon click here to look at the Sky News Website.

There is a movie that I loved called Adam. This movie is about a man, called Adam, who has Aspergers and the story is about his relationship with a woman he meets after his father dies and the difficulties he faces.

It is estimated that between 2 and 6 people in every 1000 may have Aspergers. Which means that at most large schools you may find that there is a child with Aspergers. Aspergers is more common in boys.

A book to read – Look Me in the Eye: My Life with Asperger’s by John Elder Robison

Asperger syndrome or AS is one of several autism spectrum disorders (ASD) characterized by difficulties in social interaction and by restricted, stereotyped patterns of behavior, interests and activities. AS is distinguished from the other ASDs in having no general delay in language or cognitive development. Motor clumsiness and atypical use of language are frequently reported.

Asperger syndrome or AS is one of several autism spectrum disorders (ASD) characterized by difficulties in social interaction and by restricted, stereotyped patterns of behavior, interests and activities. AS is distinguished from the other ASDs in having no general delay in language or cognitive development. Although not mentioned in standard diagnostic criteria, motor clumsiness and atypical use of language are frequently reported.

Asperger syndrome is named after Austrian pediatrician Hans Asperger who, in 1944, described children in his practice who lacked nonverbal communication skills, failed to demonstrate empathy with their peers, and were physically clumsy. Fifty years later, AS was standardized as a diagnosis, but questions about many aspects of AS remain. For example, there is lingering doubt about the distinction between AS and high-functioning autism (HFA); partly due to this, the prevalence of AS is not firmly established. The exact cause of AS is unknown, although research supports the likelihood of a genetic basis; brain imaging techniques have not identified a clear common pathology.

There is no single treatment for Asperger syndrome, and the effectiveness of particular interventions is supported by only limited data. Intervention is aimed at improving symptoms and function. The mainstay of management is behavioral therapy, focusing on specific deficits to address poor communication skills, obsessive or repetitive routines, and clumsiness. Most individuals with AS can learn to cope with their differences, but may continue to need moral support and encouragement to maintain an independent life. Researchers and people with AS have advocated a shift in attitudes away from the notion that AS is a deviation from the norm that must be treated or cured, and towards the view that AS is a difference rather than a disability.

An Affirmation for Aspergers:

I am not defective. I am different
I will not sacrifice my self-worth for peer acceptance
I am a good and interesting person
I will take pride in myself
I am capable of getting along with society
I will ask for help when I need it
I am a person who is worthy of others’ respect and acceptance
I will find a career that is well suited to my abilities and interests
I will be patient with those that need time to understand me
I am never going to give up on myself
I will accept myself for who I am

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Some days it’s no fun at all when you have Aspergers

Some days having a kid with Aspergers in no fun at all. This is not the whole truth of having children with disabilities, just part of it. I think sometimes we have to, as parents, allow or acknowledge our negative emotions. I like to be upbeat about my life but there is a difference between being upbeat and burying ones head in the sand.

My son is currently at home after finishing school. Tertiary education is expensive and although there are colleges that will take him I feel that the options open to him may not be good for him.

When you are dealing with a child, or a young adult who has a disability, making decisions is difficult. With a neuro-typical child you hope as they grow older they will be able to make decisions and take responsibility for their bad decisions. Depending on the difficulties the Aspergers child faces you may come to realise that he or she is not going to have the same ability.  Sometimes the bad decisions your Aspergers child makes may harm him or herself or others. This harm may not necessarily be physical, it may be emotional or it may lower your Aspies self-esteem. I guess this is why it is so difficult to be a parent of an Aspergers child/adult.

So my son is at home, I am trying to help him to become more independent. He loves being at home because he doesn’t have to deal with social situations. Many adult Aspies lead very sheltered lives, often being hermits.  So its a catch 22, the more he stays at home the happier he is and the less he wants to be involved in the social world. The more he stays at home the less able he is to be in the social world. I must mention that not all Aspies are like my son, some will be like him and others wont be. But the social difficulties are a common theme. My son is always going to find social situations difficult and stressful. I am battling to help him find something to do with his life that will help him become an independent adult.

2 weeks ago I took my son for a checkup with his doctor and we discussed career issues. To my surprise the doctor recommended that I look at a residential home for my son. This suggestion was like a physical blow. Luckily my son had left the consulting rooms and I received this advice on my own.  I can’t begin to describe how I felt, how I have kept on feeling for the past few weeks. I have become used to the dull ache in my heart. Occasionally I forget that it is still there.  Will I take the doctors advice? i suppose only time will tell. Initially of course my reaction was that I will never be able to do that. But never is a very long time.

What is especially saddening for me is how hard my son (and I) have worked. I go to the doctor because its supposed to help. I know there isn’t a magic wand but some improvement would be nice.  But this feeling hasn’t helped me at all. And I know its not the outcome we have fought so long and hard for. Sometimes it seems that we have fought so hard for nothing.

I remember every fight/discussion/argument I had with teachers and staff. I remember meetings in various principals offices. The amount of energy my son spent in class, doing homework, working with teachers, therapists and OT’s. He even worked on social skills so that he could enjoy friendships. Sometimes it feels like everything was such a battle. The things that come so easy to some people were just a struggle for him, and because we feel his pain, it was a struggle for us.

And what was it for? I certainly didn’t believe it would be so he could spend the rest of his life in a residential home!

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Interesting You Tube Videos

I found these videos on YouTube that describes so much about Aspergers that I was unaware of, or that I was aware of but hadn’t processed.

Such as, the differences between the neurotypical world and autistic world. This video is by Taylor who is an Aspie. She helped me understand more about my sons autistic world.

The REAL reason WHY aspies stim (Taylor)

The reason why aspies mix their world with reality, is because it helps to make our world easier to understand. (Taylor)

Here Taylor discusses externalisers and internalisers – externalisers are people who rock, have tantrums etc, and then internalisers are people who tend towards bottling it up and depression.

Theory of Mind video

Link (not a video) http://iautistic.com/autism-myths-theory-of-mind.php

A beautiful video about Aspies eyes

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Hello World

My son has aspergers.

From the moment my son was born I knew that he was different. It wasnt anything obvious but there was something very subtle about his differences. For one,  he was a very content baby, he didnt cry a lot and he wasnt at all fussy. He became a terrible toddler and some of the tantrums pointed me to a place I didnt want to go. When he went to school it seemed like we kept hitting our heads on a brick wall. What did the school see that we didnt see. At home our son was happy and content, at school (they said) he showed signs of difficulties. We started him with various therapies and battled along. The path has never been easy. My husband and I, although having 2 other children, divorced. We didnt divorce because of our son’s difficulties, we divorced because of the way we dealt (or didnt deal) with our difficulties.

My son turns 21 in a month and there are still difficulties. I have come to expect and understand that there will always be difficulties in life. Finally coming to that conclusion doesn’t make it easier, in many ways it makes it harder. But what it does help me understand is that I need to accept the things I cannot change.

On a practical level I am wondering how to have a 21st celebration when the birthday boy hates parties, music, too many people, and doesnt have friends, and cant understand why turning 21 is a celebration. Do we just not have a party? Do we do something he likes and exclude others, despite their expectations.

I am starting this blog so that I can:

1 find a place to write my thoughts down
2 I want people to read my blog and write back with their comments/feelings and experiences
3 I need to know and I am sure others do to that we share something that is difficult but also beautiful

So please participate. Its anonymous and I look forward to a booming blog for Aspergers Parents.

PS Dont you hate the name Aspergers? I read on the net that most aspies adults hate the name, sounds like ass burgers!

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