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Now that our new website is live, we are looking to get our blog up and going again! If sharing your thoughts, ideas, and opinions for the autism community is something you have been wanting to do, we would love for you to join our team! Whether you have autism, your a mom or dad of an autistic child, teacher, etc., we would be glad to hear from you. If you are interested in posting your ideas and thoughts on our blog, contact us and let us know.

Telling your child

I am a big fan of the show Parenthood. Max is so very much like my son, that every time I watch the show, I feel as though someone else gets it. On one of the episodes, Max overheard that he had Asperger's Syndrome and had a terrible reaction. This of course, brought up a debate in my house. Should we tell our son or shouldn't we.

Not long after that, we found out that our son's second grade teacher had told the rest of the class about his diagnosis. She did it when he was out of the room and described to the students about his behaviors. I still had not told him. So, all his classmates knew and he did not. When I found this out, I had incredible mixed emotions. I did notice that the other students were far nicer to him and he was coming home happier. But, I was upset that the teacher did this without informing me and was wary that he may learn about it from someone else. ( I would like to note that this teacher was absolutely amazing with my son.)

So, the decision was made for us. We had to tell him. My husband and I agonized over it for days. How would we represent this? What would we say? So, I finally set him down and told him that he had Asperger's. We told him that that was why he was so imaginative and creative. But that was also why he seemed more sensitive than the other kids in his class. He also is very aware of sensory integration issues, so we explained how that was connected. And we further discusses his need for medications and a therapist. We basically equated it to needing glasses. How some people are born with it and some people aren't. His response was not what expected. He did not ask any questions. He just kind of brushed it off and said, "oh".

It did, however, sink in because over the next few months he asked more questions. It also seemed to be a sort of turning point for him. He mentioned that he knew that he didn't quite fit in and didn't know why. It seemed as though now that his differences had a name, it made some kind of sense. A year later, the PTA sponsored a writing contest with the subject of diversity. y son not only wrote about his Asperger's, he read his speech in front of about 50 people. That was one of the proudest moments of my life.

Nancy

Waffling

School has started and once again I waffle when it comes to decisions regarding my aspie. He is in fourth grade this year. Most of the time, you cannot tell that he has a disability. However, he does have his moments.

The year started off with an inordinate amount of homework. He was "taking it like a man", but it was taking up to three hours to do. As a teacher, I know that this is not a normal amount. But, I could tell that the homework took as long as it did because of my son's hurdles. So I addressed it with the teacher and she was very friendly. When the conversation was over, I thought that I had been clear that I don't want to change anything just yet. She, however, proceeded to eliminate pieces of his homework.

I do not want my son to be treated differently unless absolutely necessary. It is my opinion that we are preparing our children for their future (all of our children). If we make things too easy for them, they won't have the tools they need when they face a real challenge. School is meant to be a place of learning and that includes life lessons. So, if he can handle the homework, even if it takes a little longer, so be it. Eventually it will come faster.

But, it doesn't end there. Yesterday, he had a full blown meltdown at school. He even hid under his desk. Plus, he had to be removed from the class to cool down. (This is written in his IEP.) He has not done this in two years, so I am concerned. Fourth graders are not going to be as nice about this as second graders. I just don't know what to think. The teacher is really nice and my son really likes her. I think maybe she is stricter than his two previous teachers.

This is the waffling part. Do I have the teacher lessen the expectations to avoid meltdowns? Or do I continue with my former belief of learning life lessons? I don't want him to be bullied by others because of his sensitivities. But then again, life isn't always going to be modified for him. It's so rough knowing what's best when it comes to you own kids.

Nancy

The Neighborhood Kids

Almost every day my son wants to go play with the kids down the street. I instantly have extreme anxiety. Never mind the fact that the whole group of kids plays on a blind corner. That alone sends shivers down my spine.

My son has difficulty socializing with others sometimes. If a child doesn't want to play a game he wants to, he takes it personally and thinks that they don't want play with him. He also is very rigid and doesn't want to play many sports games, which is, of course, what they all want to play.  Furthermore, he can be a terrible loser. I cringe when I think about the meltdowns that may occur. I understand that these are skills he needs to work on and this is the perfect venue for it.

The thing that bothers me most though is that there is a bully amongst the group. He is half my son's age, but he is mean. He constantly makes fun of my sweetheart. I can't tell you how hard it is not to march right down to his house and paint a pretty picture for his mom. But, I know that this will only make matters worse for my son. So, I work with him constantly on ways he can deal with this. I have decided to take this as a learning experience. It will only prepare him better for school.

When my son asks to go out front, every fiber in my body yells out, "Follow him and protect him." But I don't. I wait inside the house and bite my nails. I worry that he is either being hit by a car or being verbally abused by the other kids. I wonder when he is going to run in crying.  But, those times that he comes in with a huge grin on his face, telling me how much fun he had. Explaining each part in full detail. Those are the moments that make me fully appreciate the fact that I Iet my darling go out to play.

Nancy

Early Childhood Evaluation

Last week I took my two year old in to be evaluated by Early Childhood. This was completely nerve racking. I had not done this with my oldest, because we didn't realize there was a problem until he was four. From the minute I walked into the front door, I was a major ball of nerves.

My two year old reminds me a lot of my oldest. He throws tantrums that seem long to me. He obsesses over a specific topic, puppies. Everything he wants to do is related to puppies. He stems by running his head back and forth against the back of the high chair. He seems delayed in speech. So, naturally after going through this with my oldest, I was concerned.

They had me fill out several questionnaires in a playroom where the baby got to play. Of course he kept trying to escape. so, it was an arduous process. Then they led us to a room where there were two evaluators. They were incredibly nice. They basically watched him play and wrote down their observations. It was completely harmless. If they didn't see what they were looking for, they asked him to do things. He was, of course, absolutely brilliant, displaying none of the things that concerned me. They were able to give me their results right then.

Well, they said he was normal in every area. I know I should be celebrating. But, I can't help but be nervous that this is going to come back to bite us. When I had concerns regarding my oldest, the pediatricians told me that they saw nothing wrong. This led to him not getting a diagnosis until he was six. I can't help but feel if we had gotten help sooner, he would not have had to go through some of the painful experiences that he did. However, I am going to cross my fingers that I am just over sensitive to the signs and that the evaluators are indeed correct.

Nancy

Public Places

I don't know about you, but the idea of going to public places with my son, used to give me major anxiety attacks. I would do just about anything to avoid it. We even ate fast food for a week because I didn't want to go to the store. The other alternative was going late at night after the kids were in bed and my husband was home from work.  This was hard as well because I too was working full time. Staying up later had me incredibly exhausted at work the next day.

So, I needed to bite the bullet and bring the kids to the store. But, you see, my son had major breakdowns; screaming on the floor breakdowns. People would come running to see if I was beating him. I would purposefully stand a little distance from him because I was afraid someone would call the police. I didn't want anyone to even have the impression that I was touching him. This almost always ended in someone calling him a spoiled brat; sometimes uttered under their breath, sometimes straight to my face. (One friend told me that someone told her that she should beat the tantrums out of her son! Really? So uncalled for.)

I tried everything. I tried reasoning. My son is really smart and very logical, so I thought this tactic might work. Unfortunately, logic takes a back seat when his emotions take over. I also tried bribing. This was a temporary solution. It worked, but he would make increasingly more demands and when I couldn't follow through, the tantrums were even worse. I once even got on the floor next to him and threw a tantrum myself. He did stop for a moment to look and even laughed.  I'm sure we must have been a hilarious sight. It only worked once though. Plus, public floors are so gross.

My son's behavioral therapist told me that if he is throwing tantrums, he must be getting some reward out of it. I'll admit it, I thought she was nuts. I mean what could he possibly be gaining from this? So, I tried something new. I picked him up and took him out of the store, sometimes leaving full carts. I would deposit him on the front curb and stand further away as if I were ignoring him. (Secretly watching of course, because I didn't want him to injure himself.) Furthermore, I also had to ignore the people around me, which was really hard. Some people can be really cruel. I found that I usually had two results; he either didn't get the attention he wanted, or he exhausted himself out. Both gave me what I needed. At that point, the choice was to either leave or go back into the store and finish my shopping. Sometimes I would luck out and my cart would still be there. Unfortunately, there were times when I had to start all over. These days were some of the hardest days I have had. I have had to swallow my pride, hold my chin up, and do what I knew was best for my child. I can't tell you how many times I have called my husband crying from the car.

Being strong for him was one of the best things I could do. He has learned that I will not back down. Now mind you, we still have these days once in a while. It has not "cured" my son's Asperger's. But, it has reduced the tantrums that used to be EVERY time. It has also given me a plan. I don't have to question what I am doing. I no longer second guess myself or waffle between strategies. Both my son and I know what to expect. Hopefully, we will one day get to the point where these episodes will be in the past; but until then, we will continue with the plan.

Nancy

Hello

Since this is my first post, you probably want to know a little about me. Maybe you wonder why I am a guest writer in this blog. 

When you introduce yourself to people, do you ever notice that you usually give yourself a label that you self-visualize in the order of what you view as important? I used to introduce myself as a teacher or as a reading specialist because I was proud to be those things and perceived that others would too. I have recently come to realize that I should be introducing myself as a mommy and wife first because that should be the priority in my life. The sad thing is that often others don't perceive these labels as interesting or exceptional. Sadly, being a mommy is an underappreciated position. I have made this shift for myself in not only thought, but in action as well. I have decided to take a leave of absence from my career in order to concentrate on my family. I imagine that my labels will shift again as my life progresses.

I have three sons. My oldest son is nine years old and has been diagnosed with Asperger's Syndrome, Emotional Disorder, and ADHD.  My five-year-old son has no diagnoses to date and I suspect he won't. My youngest son is almost two, and reminds me very much of the oldest. He has minor speech delays and throws tremendous tantrums. We are keeping an eye on him and crossing our fingers that he won't have to jump the same hurdles that my oldest has.

I have found that having a child with special needs truly changes your perspective on life. Sometimes I look at others and feel like they are lucky to not have to face these challenges. After all, my visions of a house with a picket fence did not include this. Don't get me wrong, many people face worse challenges than I do. I feel I have become a better version of myself because of my boys. I am far more patient with others and am far less judgmental. Plus, I celebrate each achievement with far more vigor, as it was more challenging to get there. I will have so many more special memories because of this.

My future posts will be about my adventures with my boys and the challenges we have overcome. As well, as those we still have to face.

Nancy BleuerNancy

Time to Breathe

I am a week late with this post, certainly not from a lack of things to blog about. At least 4 blog-worthy things a day happen in my household! 

I am behind with everything. My house is a mess. I literally have mountains of washing to do and even more mountains of clothes to fold /put away. I feel like I'm taking one step forward then running 5 miles back in the opposite direction. 
I am constantly begging forgiveness for my tardiness and have been seriously questioning my time management skills. Very upsetting as I have always considered myself the Queen of Multi Tasking. Hell, I used to be able to single handly manage establishments with over 25 staff, on very little sleep and never missed a beat. I just turned 40...Maybe it is middle age creeping up on me? Or maybe I have lost my Mojo?

As you can see this has been bothering me and tonight I went to my calendar to add an upcomming event and saw this....

This is a photo of JUNE...It all makes sense now. Not only does June look like this but so does May, April and feb....

No wonder I am frazzled. No wonder my children are frazzled. 

I am sure most (if not all) parents of Special Needs kids have similar looking Calanders. Actually I'm sure most parents do.
There is light at the end of this long, frantic tunnel though. Friday is the last day of school this term. Two whole weeks of nowhere to be unless we really want to be there. I never schedule Drs or Therapy appointments during school holidays. I need a break and so do the kids. I also (and I learnt this the hard way) only concentrate on one Therapy at a time. 

When my boys were younger and we had Early Intervention funding at our disposal I made the mistake of cramming as much therapy into each week as possible thinking I could work on all their issues at the same time. This back fired spectacularly...Not only did the therapies have very little effect but the boys were a mess. They were stressed and melting down at the smallest of things- much more so then usual. I finally realised it was the constant appointments and the sometimes daily changes to their usual routines. Also the pressure of trying to *fix* so many different issues in such a short space of time was not realistic. So now I work on one thing at a time. Quality not quantity.

So, although I know by next Monday I will already be counting the days until school starts again, I cannot wait to stop and maybe even find some time to breathe...

See you in two weeks when I will no doubt be cursing school holidays and be in serious need of Therapy myself!


TeriannTeriann

Are You NOT Thinking What I'm Thinking?

Like most parents of children on the Autism Spectrum, the drive to pick my boys up from school is often accompinaied by my extreme trepedition. Although I am always looking forward to seeing them I am also preparing for the consequences of how their day has gone. Good days are few and far between and even the best day can still result in the boys being unregulated and on edge. In fact it's those days that the boys Aide tells me what a fantastic day they have had that I dread the most. Them having a good day at school means they have managed to work on someone elses agenda for an entire six and a half hours. It is awesome  that they can do that  but unfortunately there must be a payback.

Professor Attwood explained it to me like this.

Imagine your boys are a spring. When they are able to do what they want,when they want and engage in those activities that give them pleasure they are nice,relaxed, loosely coiled springs. When they are at school, they are having to act and think in a way that is totally unnatural to them. They are doing what is considered "right" by their teachers and peers but while they are doing this our little springs are winding tighter and tighter and tighter. Now we all know that the tighter a sring is wound the more force we  can expect when it unwinds. For your boys the unwind happens the moment they see you. They relax and BOING! Unlike a spring the unwinding is not completed instantaneuosly. Some children take hours to unwind and during that unwinding they are more prone to meltdowns and almost always find it impossible to regulate themselves.

Doesn't really make for a fun afternoon!

I have not really spent a lot of my time post my boys diagnosis wondering what caused them to have Aspergers. I do however find it fascinating and extremely helpful finding out why they act the way they do. Once I understand  what causes a behaviour it is ultimately easier to deal with.

The most insightful lesson I have been given about my boys and the struggles they have with social interaction and communication was the one I learned when Theory of Mind (ToM) was explained to me. ToM is complex and multi layered and the subject of many developmental studies. In it's simplest form this is how I understand it:

ToM is the capacity to understand the thoughts, beliefs, intentions and emotions of other people. 

Most people with ASDs  have a deficit in this area so find it incomprhensible to think that other people have their own thoughts, beliefs and emotions.They think everyone is thinking, believing and feeling what they are! 

Here is an example of how ToM deficit effects my son Ryan.

Often when I pick Ryan up from school I am greeted by a filthy look and grunts instead of greetings. He will then proceed to fling his bag at the car and slam his door after entering. I will ask him what is wrong? His answer is always the same. "DON'T YOU KNOW I'VE HAD A BAD DAY!" 

Obviously seeing I have been away from him for the entire day I don't know anything about his day but he thinks I do.

 Yesterday after this typical outburst I explained exactly that. After which he told me he had a terrible lunch time  and his friends hate him. He felt his friends only played fun games when he was not with them and boring games when he was around. I asked him if it was possible that his friends thought the games they were playing with him WERE fun. He answered "But they're not they're boring I hate them." Again, in Ryans head they were thinking and feeling what he was. It made much more sense that his friends were deliberately playing boring games with him because they hate him.

You can see how confusing this whole socialising business is to a child with ASD!

A Theory of Mind deficit can not be *fixed* instead it is up to us to teach  ToM to our children. This in itself  is a huge task as each and every possible scenario our children may encounter where ToM is needed, needs to be adressed induvidually due to one of the other problems our children have, generalising. 

One of the more interesting parts of my daughters recent assesment appointment with our Psychologist was watching her test  Darcys ToM. Here is an illustrated example of this test. (BTW, my daughter,like her brothers failed this particular test) 

the experimenter asks the child three questions:

  1. ‘Where will Sally look for her marble?’ (belief question: the correct answer is ‘in the basket’)
  2. ‘Where is the marble really?’ (reality question: the correct answer is ‘in the box’)
  3. ‘Where was the marble in the beginning?’ (memory question: the correct answer is ‘in the basket’)    

 Most Neurotypical children will answer all three questions correctly.

Most children with an ASD will answer 2 and 3 correctly  but will expect Sally to look for the marble in the box. They know it is there so Sally should also.

Fascinating, right?

Hopefully as I continue on this journey with my children I can learn more about ToM and the many other reasons my children find this world of ours so difficult to navigate. The more I learn the more able I am to help them overcome their difficulties and although I know life will never be easy  for them I can only try my best to make it easier.


TeriannTeriann 
 http://www.morgansx6-aspergersrules-morgansx6.blogspot.com.au/

Hair Raising

There are two things that strike fear into the hearts of most parents of children on the Autism Spectrum...Hair cuts and shoe shopping. I dread them both equally,however that did not stop me from attempting to do both things with both of my Aspie boys and their Nerotypical brother on the same day. For a little added fun I also had their four year old sister in tow.

It was never going to go well. There was nothing in my favour. It was after school when both boys are on edge from having to work on someone elses agenda all day. They were hungry and I had not given them any warning. I did however offer a bribe reward for good behaviour.

I returned home with one pair of shoes and one haircut completed (both for my NT son). Ryan and Pierce did not even make it inside the Salon doors. The noise and confined space was just too much. They also refused to try on shoes. They did however get a Lego man each as the fact that they managed to remain reletively calm while Shaun was getting his haircut deserved rewarding.

It has been almost three weeks since that epic fail and although I had managed to get both boys new school shoes they were still in desperate need of a haircut. Everytime I mentioned it to them I was given a reaction that told me now was probably not a good time to attempt it.

Imagine my surprise when making a quick stop at the local shops after school we walked past a Barber shop and Pierce grabbed me and said "Haircut, haircut. Now Mum!"  Of course I immediately whisked him into the shop before he could change his mind. The shop was empty so no waiting. I was about to do my usual spiel to the hairdresser when Pierce beat me to it. "I have Aspergers, I hate things tight around my neck, Hair makes me really itchy and don't make the chair go up high because it freaks me out."

The hairdresser was very understanding and patient when Pierce refused to have the paper collar placed around his neck and made her adjust the cape three times before she got it right. I gave her instructions. Clippers,number 2 (nice and short so it lasts longer) and away she went.

In the mean time Ryan has jumped into the spare Barbers chair and started spinning gleefully, until a second hairdresser appeared and informed him "no sitting in the chair unless you are having a haircut." ( She is now known as cranky hairdresser) Ryan didn't hesitate. "Can I have a haircut too Mum?"  "Yes, you can!"

Twenty minutes later I had two boys with newly cut hair and only one little drama. I had forgotten to mention Pierces scissor phopia and when the hairdresser whipped out her lovely sharp scissors to snip a stray hair Pierce lept from the chair and curled up in a ball on the floor. We must remember to add that to the spiel next time!

Hairdresser number 1 told Pierce he was her best customer all day and I think I would have loved her if only she didn't blow it by her parting words. When paying her she asked if both the boys had Aspergers. I replied yes...she left me mortified with her pitying comment "Oh you poor thing." Even worse she said it in front of the boys!!! I immediately replied "no not at all they are amazing, I am lucky to have them."

Instead of letting that comment spoil the moment I decided to concentrate what was good about the afternoon. I was extremely proud of Pierce for being able to comunicate his needs to the hairdresser. I was also thrilled that he let her finish after the scissor incident. Both boys actually requesting to have their haircut was a first and Ryan got to have a spin in the chair. All in all it was a huge WIN!

TeriannCatch you all in a couple of weeks,

Teriann Laughing

http://www.morgansx6-aspergersrules-morgansx6.blogspot.com.au/