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Ignorance is bliss

3 Feb

It’s heartbreaking yet somehow comforting knowing there are other families facing the same battles.

I love that this blog has created a place to bring these families together.

Sometimes, despite our family & friends we feel so isolated.

Surrounding yourself with those that relate…

Is comforting & fills us with the strength needed to carry on with the daily …

battles the system brings!

I’ve heard so many horror stories from parents who in some way or another have been dragged through a system that leaves them both physically and mentally exhausted. Many will tell you, “It’s not their child’s condition that takes them to the edge… But the length’s they have to go to get that condition recognised and provided for!”  Most will come out stronger for it… what choice do they have? These are our children and we only want what’s best for them! Every child deserves an education, an understanding environment, a chance to succeed & be valued for the person they are.

Today’s post is not written by myself but from a dedicated reader who I’m so pleased contacted me to share her journey. In so many ways I related to her story, like I’m guessing many well… Helen is a single mother of three. Her eight year old son Max has a diagnosis of Asperger’s syndrome and ADHD… She talks of her challenge to gain his diagnosis and have him educated alongside his peers. Though Helen has been fighting this battle for a few years she still has some way to go… Here she tells us why…

I am a single mum with 3 great kids Lydia 11, Imogen 10 and Max 8 and a half. I’ve been bringing up the kids by myself since Max was 9 months old. I suppose I’ve always known Max was different but things started to go wrong when he started school. I’d already expressed my concern to his reception teacher before he started but this fell on deaf ears and they wouldn’t even consider a statement even though his pre-school teacher had already recommended one. To cut a long story short,  every time I picked him up from school I’d be taken to one side by his teacher with a look of horror on her face and asked to explain his behaviour which of course, I couldn’t do as I’m not a child physiologist. I couldn’t understand why they seemed so shocked and surprised as I had already stated that I thought there was a problem but still they wouldn’t request a statement and I felt they were laying the blame on my parenting skills. The pressure became too much and soon i was overwhelmed. i was already being treated for depression(postnatal after Max was born and after the breakdown of my relationship) eventually i had a complete nervous break down and the children went to live with my parents for a few months while i recovered. they went to a brilliant school while staying with my parents and Max’s teacher was sure that he was on the autistic spectrum. When the children returned to me and back to our local school Max was referred to the schools pediatrician who diagnosed him with DAMP. Things still didn’t improve and by this time he was regularly being excluded. He was seen by the ED physic and she very helpfully suggested that Max’s issues were down to him not feeling he had  control in his home life(he was 6 at the time) and that mother was known to have mental health issues! Thank you! Although we’d had our problems, the children have a very stable upbringing and the girls were model pupils with no issues at all, in fact they were excelling and still are! At every meeting (and there were loads)! Some teacher/armature physiologist would suggest that Max was emotionally disturbed so I went to my GP and told him that if my son was going to be labelled emotionally disturbed then I would want a qualified physiologist to tell me so and offer him and me( as they were so convinced it was my fault) some support. I asked for a referral to CAMHS but was told it was a school issue! This went on for years with endless pointless meetings and bad advice and opinions from people who had not even met Max. In the end it took me to break down in tears with snot everywhere after being summoned to the school again when max punched the head mistress in the face(and by this point, can’t say I blame him)! And beg them for help. He was finally referred to CAMHS and diagnosed with aspergers (heavily affected apparently) and ADHD. Just after this another expulsion and after that I was expected to take Max to school at 9, pick him up at 10.30 take him home, take him back at 1 and pick him up again at 2.30. After the ADHD diagnoses I felt the pressure from the school to medicate Max and he was prescribed Ritalin. I was very uneasy about this and it worried me that the school seemed so keen. It may have made a slight difference in his concentration but I saw little evidence of this, it did however decrease his appetite and have him bouncing off the walls at night. Max has major food issues probably due to his amazing sense of smell and it’s a real struggle to get him to eat at the best of times and I probably don’t need to tell you about sleep issues! All I know is that the Ritalin made his senses and anxiety go into overdrive and was making him ill so after long discussions with the GP and CAMHS  took him off. This was frowned upon by the school and he was excluded that day. I went back to CAMHS and agreed to give another drug a go. Straterra. he took it for the first time on Thursday which was also his first day back in school after me keeping him off for a week because of the latest exclusion. While I was in the heads office discussing the new arrangements a TA came in and told us Max was being disruptive and seemed very tired and was told to take him home for a rest. He was up most of the night the night before because he didn’t want to go back so took him home and laid with him in my bed to try to get him to get to sleep. He suddenly started pointing at mid-air and asking me what was going on because he was seeing flashes of colours! I immediately referred to the literature that was given to me about the drugs but couldn’t see anything about it in there so I looked at the leaflet that came with the drugs in the packet. CAN CAUSE HALLUCINOGENIC EPISODES AND PSYCHOSIS!! I phoned CAMHS and was told not to worry and keep going and told the school about it and they dismissed it and said it would take time to get used to the drug. OH! That’s Ok then! When I took him back this afternoon he started seeing colours again and seems very lethargic and this is frightening him. He describes them as scary /pretty colours. Again the school are not at all bothered. Is it me?? Am I losing the plot to be concerned about this? Does it make me an over protective and neurotic mother to be worried that I might be giving my otherwise healthy child a drug that could make him mentally ill instead of a drug that made him physically ill just so he fits in with societies rules and makes their job easier? Nothing makes sense to me anymore, maybe I’m the one that’s ill! His statement was still 5 months away at this point and by this time I’d found your blog(a god send by the way) this helped me to realise that the statement would probably come back and bite me in the arse anyway so I told the school that I was very unhappy with the way things were going and was concerned about his lack of education so I wasn’t sending him back. On top of all this, I’d been offered a place on an early bird+ course arranged by CAMHS and specialist teaching but was told by the head the day before that I wouldn’t be able to go because they didn’t want Max in school for a whole morning. I was devastated. I desperately need to meet other families like us and need to learn as much as I could. Thankfully early birds have offered me a place in the summer and recommended a book by Tony Atwood which I’m reading at the moment. A meeting was called at the school last Monday where they persuaded me to hang on until the statement comes through and have promised to arrange to have Max until 11.30 and then for me to home educate in the afternoons. I suspect they were given a bollocking by the specialist teaching service for not supporting me. Ok, I’ll give it a go, but I’m not convinced. He didn’t even make through the doors this morning before I was asked to take him home and bring him back at 1.

My issues are that they have treated me like I am the worst parent in the world for long enough. I have done everything that has been asked of me and it’s them that keep moving the goal posts. I’m sick of being patronised by them and it really annoys me that suddenly everyone’s an expert on aspergers ADHD and Ritalin when they clearly haven’t got a clue. They keep telling me that they have never had a child in school like Max and refuse to believe that I do not have the same problems at home. Max is a funny, loving, good-looking (he gets that from me) charming little boy with a brain the size of a planet and he deserves much more than this. He’s being treated like an outcast! How the hell is he gonna come out of this with any sense of self-worth or prospects? Fast coming to the end of my tether and don’t know where to turn next. They treat me like I’m stupid and incapable of making informed decisions. Max has been badly let down by the system because they were too busy judging me! I am beginning to realise that we are at the beginning of a very long and exhausting journey and we will have to fight for everything. I feel very alone and isolated especially with the school timings, I feel like I’m under house arrest! Trying to take one day at a time at the moment but I lie awake at night worrying about the future. At the moment I think Max is shielded by his aspergers, he doesn’t seem to notice or care of other people’s reaction to him. I’m sure this will change in the near future as he gets older. Friends with kids have moved away from us and friends without kids just don’t get it and just see him as a naughty boy. Basically we keep ourselves to ourselves now and pretty much don’t see anyone. I couldn’t be more proud of Max, he’s such a brilliant kid! Him being diagnosed with aspergers came as a huge relief but it has also broken my heart as I’m sure you will understand. Another, unexpected twist has come of this as well. The more I learn about this condition, the more I am convinced that I have it as-well. Not to the same degree as Max but it explains a lot about my life. I have always felt like I’m on the outside looking in. I have always wanted to fit in but never quite managed it. Now that I’m older this doesn’t bother me as much. I find most people superficial and selfish. I’m quite happy in my own company and quite often go out by myself and just people watch. Even when I’m surrounded by people I still feel alone. It has never occurred to me before because even though at times I can be quite reclusive when I’m out and about I have a whole other person and I’m very charismatic (or so I’ve been told) and out going. It appears on the outside that I’m quite confident and comfortable in my own skin but actually I have a very low self-esteem. I read that aspergers can be more difficult to spot in girls because they are more able to hide it. It’s slowly dawning on me that I cope with some social situations logically because I don’t seem to understand the rules. I’ve spoken to my parents who are also learning all they can about aspergers and they are beginning to think the same. I reckon it has come from my dad’s side of the family. Not sure if I should push for a diagnoses or not as it’s probably too late anyway but it might help me understand some of my demons.

I’ve decided I’ll hang on till the statement comes through but unless he is offered a place in a school that welcomes him and understands him I’m pulling him out and home educating. There has to be a place for him somewhere and any where is better than this.

By Helen (Mum to Max)



Tad Auty.. A school excursion.

5 Sep

It’s been a while since I featured a guest post on the blog. I decided that I wanted to hear from those who had a deeper insight into the world of autism, but even more so Aspergers! It was a few weeks back when I received a friend request trough Facebook, by Tad Auty. Tad a 40-year-old Australian female who is on the autism spectrum (diagnosed with Aspergers), was also an active member on the Facebook page ABWA. I noticed that this Inspiring, clever lady was dishing out some pretty good advice! Members were gaining a great insight on what life was like for someone on the spectrum. I read a comment that Tad recently made on one of the treads on the group wall. It was started by one of our page admins who wrote about a social situations encountered by her young son who has a diagnosis of AS. Tad’s comment was a real eye opener for many parents reading it, Myself included. So with this I decided to invite her to write the next Guest post. I was delighted when she agreed, and with a topic in hand (School excursion) Tad got to work in producing the following piece.

I hope you enjoy! I know I did 🙂

Claire Louise


The remainder of this post is written by Tad Auty, a 40-year-old mother diagnosed with Aspergers and living in Australia.

I was asked to share with you, how I feel, how I see things…as a hope that it will help to explain how some of your children may feel in certain situations…

I’m a 40 year old female who was diagnosed with Aspergers at 33, after many years of depression and feeling like I was weird, wondering why, if I was good at jigsaw’s, I couldn’t figure out how to “fit in”. Why had I ended up being a divorced mum of 3, when I thought I was going to be a “Ologist” of some sort! (as a kid I went from geologist, to archaeologist, psychologist, anthropologist, theologise….anything with “ologist” interested me) Why was I so clever & strong in many ways, but SO DUMB in others, unable to do simple things that others can. Like be quiet! I had read about autism, (I had read about a lot of psychology as a small child, trying to figure out how I was “supposed to be”) but what I had read about autism, was all about non-verbal people. When I moved in next to Johnny, my eyes were opened.

Johnny was 4-years old when I met him. He wasn’t verbal, he flapped and shrieked and liked lining things up. My children loved Johnny and had a real gift at being able to play with him in a way that didn’t upset Johnny or get into his space too much. I would watch Johnny and was able to predict a lot of the time, what he was about to do. People would say “I wonder why he does that?” and I would reply, “Well I can’t be SURE, but I did that too, and it was because of…..”

Johnny only ate certain shaped and coloured food, and you couldn’t changed brands on him…..I would say “Of course you can’t change brands!!” Johnny would line up blocks and not let others join in. People would say “He wont let you join in”, but after weeks of watching, I worked out his pattern and system! I knew I had to drag the block on the carpet in a perfect straight line, then lift it to my lips and brush it across them, then slide the block back in a straight line along the carpet. I was so nervous when I tried it, as he watched on about to shriek or disengage at any second, but he watched on, and then saw what I did, THOUGHT about messing all the blocks up (as he does when people ruin his rituals), then he paused, looked at me again (like he was saying, “oh she has made such an effort to do it right, I will let her play”) and he went ahead and put his next block in place.

It was because of Johnny I read a (more modern) book written about autism. As I read it, I was thinking “same as me”, “that’s how I feel”, “OH so auty people can talk TOOO much!!”. I had the experience of relating somewhat to books on bipolar/schizophrenia/depression/eating disorders, etc…… But this autism thing, I didn’t just relate somewhat, it was like reading straight from my private thoughts and feelings. If I had to highlight the relevant parts, I may as well have dunked the book into a bucket of pink ink!

That was when I realised what was going on with me…And that I wasn’t alone. That Johnny and I were alike for a reason, (though so many judge him as being low functioning, because he is more disconnected from the world of people than I am, I do not like the high/low functioning label, as I think it’s a value judgement. If our society was different, and didn’t expect people to all be the same, Johnny would be valued EVEN if he just wants to line up blocks and sit on a hill in the wind in a breeze! He is functioning quite well in his own way, and is a happy person most of the time:-)

I went off to see a Psychologist who specialises in autism, and was diagnosed not long after. Life has been a lot better since. I still have the same brain, but I understand how it works now. I understand more now how NTs work too. I have learnt how to realise what “feelings” are and talk about them when required. And though I still have struggles with feeling disconnected socially/emotionally or frustrated with my neurones at times, I know now that I’m not a lone alien. I still feel like I’m from another planet, but it’s Ok, because there are heaps more of us here, and now I know that, I see them everywhere.

I thank fate/nature/God for introducing me to Johnny….and all of the advocating I do, I do for Johnny! Because he cannot speak for himself, and though I’m not him, I do empathise with him and his mum and dad….and all the other Johnny’s (and Sally’s) and their parents. I feel pretty useless at a lot of things, but words are my thing, and finally my private world, and my words, can actually connect me to people, help others feel less isolated, and likewise, I am less isolated, from meeting so many other great people who have felt this way too.

I decided to choose a memory from my teen years to share with you…
Something so simple to many people…. A school excursion, Something the other kids at school looked forward to.


When I started in year 7 (aged 12), I was a “mature, well-read, little lady”. (So one teacher said in my school report…. Gee I had her fooled) I drifted about school, had a few “friends” (I defined friends as “people who tolerate me”) who I sat near and tried to say the same things as. Outside of school I was a free child….I was more relaxed….I was a lot
happier around older people and my little boy friend from down the road. I didn’t have to pretend to be normal around the people at home. I was accepted as I was.

School was another thing though. Being a female meant I had to hang out with girls at school. There was too much negative attention for talking to boys…people would make it into something romantic, whereas I just wanted to hang out with boys because I found them less judgemental of me. I was one of the few kids at school who were actually there to learn! I liked school and most teachers! (MOST…the others suffered though :)) I would have been a very happy kid if there were no other kids at school…if the teachers were all there just for me! So when other kids liked to get to school to see their friends and looked forward to lunch breaks….I actually only looked forward to classes…and dreaded lunch breaks!

So I wandered about at school for years keeping up a facade of a perfect little robot….(I was never perfect at it though)….I was getting good marks, but I was suffering from anxiety, insomnia, self loathing, loneliness, isolation inside myself….I had no REAL friends. My boy friend from down the road, who had been my bestest buddy in the world since I was 4….. His parents won tatts lotto and they moved away. I had those “friends”, but their company very much replied on me conforming to their ideas and beliefs, so I felt I wasn’t being authentic.

THEN came along Sally! In year 8 Sally arrived at my very nice wholesome catholic school…she had a short skirt and wore makeup and had an ATTITUDE! But…I also noticed in class that she was very bright. She was also absolutely instantly rejected by everyone in the class, male and female, AND many teachers. I don’t know if it was that we were born only two days apart, or that she was outwardly expressing the depression that I was hiding, but I gradually befriended her. She was very untrusting and hesitant at first, but once she realised this little geek was for real, she and I became friends. (She said she was Fonzie and I was Richie Cunningham..I think I’ll a little Potsy and Ralph Malph too)

When Sally appeared, I had finally found someone who was witty and clever and questioning…someone who understood feeling left out or judged. We were quite the odd couple and my other “friends” told me I was to stop associating with her because of how she looked and her reputation. Though our schoolwork was great, teachers started separating us in classes. I think they didn’t want me “tainted” by her, but the truth was, she was actually helping me to speak and be myself. I wasn’t interested in going out and partying or chasing a heap of boys….. Poor Sally had abuse issues and was acting out her own thing. I wasn’t like that, so I didn’t go out with her outside of school. I would visit her house, but not when she had a party.

SO…..Our school excursion was coming up. The teachers announced that the camp would be divided into two groups who would go separately to camp. The teacher read through the list, obviously grouping people with their best friend groups…Except Sally and I. We were put into separate groups. I was put in with my “friends” from the year before who had been excluding me since I was still being a friend of Sally. I had never really looked forward to camps, but this one I was dreading now I was completely isolated. And it was very obvious the staff had gone out of their way to do that.

CAMP….
So first I have to face that horrible thing of getting a seat on the bus. People saying “No this seat is saved”. So I sat near the front…and could hear people speaking about Sally. Saying mean things….I knew she had issues, but what they said was off the mark. And they would say it loudly and would then say my name. I wanted to die. I felt nauseous and spoke to one of the teachers about geology to make myself block out the conversations behind me.

We were then put into groups for our rooms. Of course I was put in with the nasty little girls who the teachers thought “Would be good for me.” I chose a bed and was then told I couldn’t have that one… One of the “boss” girls wanted that one. I was put in the bed on the other side of the room. The girls were sometimes including me in conversation, but half the time I couldn’t tell if they were being mean to me or nice. They would say things about my clothes or hair…and then laugh and if I looked confused, they would say  “No I didn’t mean it bad” and then laugh again. These girls were sweet little Catholic girls…sweet to who THEY decided was “one of them.” The girls all wore heaps of perfume and sprayed deodorant constantly. I would have to hide my head under the blankets, which of course made them say things about me making a big deal out of nothing. (Nausea, headache, brain gone fuzzy…nothing to them maybe!)

Mealtimes were hell. I am still a fussy eater now, but back then I was even worse. I ate butter, not margarine. I didn’t eat fruit or veggies. I didn’t eat pasta. I didn’t eat rice. I didn’t eat anything other than meat and potatoes basically. The thought of having those textures or colours in my mouth made my adrenaline kick in and I’d feel sick and shaky. I knew how to not eat things….just leave them on the (contaminated by vegetables) plate, but sometimes, if the meal was spaghetti for example, I didn’t get to eat at all. Depending on which staff member I asked, some would say  “Too bad You get what your given so eat it” Which of course I wouldn’t. I had a nice teacher who would make me a sandwich if I asked sometimes. Otherwise, I had my secret stash of food in my bag that mum had packed. She knew I would need energy on camp, and she knew that I may not eat if she just trusted the school to feed me. Other kids would sometimes make a big deal about what I ate, or try to make me try things…..Or put other things on my plate to freak me out. There were always comments about me being fussy, like I was precious. But I didn’t want filet mignon! I was happy with a sausage in a piece of bread. I just wanted to eat and have no-one take any notice. I still hate dining out and avoid dinner parties…my friends only invite me if they’re having a BBQ :))

Then came the “camp activities”. Oh how I  hated those activities!!! One was called Ambulance…. Everyone had to jump on each other and hold onto others in a big knot of people…. Then the “paramedics” would try to drag them out one by one. I would just hold someone’s shoe on the edge and let the paramedic pull me out first. That was one competition I had no desire to win!!

Another activity, you had a short straw in your mouth, and had a lifesaver, donut shaped sweet, on it. You had to turn to the person next to you and lean in close and transfer the lifesaver to their straw in their mouth. The NT kids thought it was a riot! I would just drop my lifesaver and be out straight away on purpose. I hated circle activities with nowhere to hide and even just the part at the start when they said we had to hold hands to make the circle.

I DID enjoy one activity. I liked the small group discussions about religion/philosophy, inclusion, etc. The only trouble was, anything I said in the group, and the group may have even been really accepting of it or said it was good, I would get outside, and the next thing, those people in my group had twisted something I had said and the other kids were picking on me about it. So it wasn’t even safe for me to have a real discussion without the bullies wanting to use it against me.

The worst thing was “free time” though. This included a big mud fight once. I was holding someone camera so no one dragged me in, then I ended up holding all of the cameras (and taking the photos, which is actually how I started to become a photographer seriously, I learnt that if you TAKE the photos, you are never in them 🙂 AND people don’t push you around if you are holding the cameras, AND if you make sure the photos are good, people will ASK you to do it again!

Other free time activities that I was petrified of were boy/girl pairing off and kissing, etc. I saw how girls were picked on if they said  “No”, but I wanted to say No, but I didn’t want to be called “frigid”, which was the BIG insult, so I made up a fictional boyfriend. SO instead of being called frigid for saying no, I suddenly was being labelled a tart! (And I didn’t even kiss a boy until 4 years after this!)

Off to bedtime and I have to lay and listen to the other girls talk as I go off to sleep. When they think I’m asleep, they proceed to whisper about me and how I don’t eat certain things, what I said, how I didn’t want to kiss the boy, etc. I was crying and dying inside and just wanted to be at home! Sisterhood! Phooey! Not if you’re not a full blood sister apparently!
This was the last school camp I went on. They allowed Sally on one camp with me…where there was no choice, so I went to that one. And even enjoyed a lot of it. There were still those same moments…..People are people. There were still bitchy comments occasionally, and awkward moments for me when I had to hide for a while, BUT when I had Sally there, half my anxiety was gone, because I wasn’t alone. Alone we are far more vulnerable to bullies. And bullying isn’t always obvious…Especially with girls. They can be amazingly evil with just a look or using they’re networking skills…. I wished I’d gone to a boys school, but I know they wouldn’t let me in 🙂

(Sally Update: Sally is now a lawyer and high up in law enforcement. She is far more successful, together, happy and wholesome than those who judged her…Once she was an adult, and got past her abuse, she did well. The others, once they got out of school, started wearing mini skirts and lots of makeup 🙂

Tad Auty

Do you have a comment or question for Tad? Do you wish to find out more about this  amazing woman, mother, Photographer, advocate, & writer? Feel free to leave any comments or messages for Tad and we will make sure she gets them.



WHAT WAS THE POINT?

24 Apr

First guest post by my good friend Donna who attended Court with me on the 30th March 2010 regarding attendance. Here is what she had to say....

What was the point?

After attending Court with my best mate Claire I walked away with a head full of questions a heart full of conflicting emotions. And a sore chin ( due to my gobsmacked response to the guilty verdict. )

obviously I was happy that the more serious charge of “intention” ie.. that Claire intended to keep the children away from school wasn’t upheld-anyone with two brain cells who knew anything about Aspergers would agree with the verdict. However I’m left wondering how many brain cells the person/people have who decided to raise the question of “intention”

In reference to the “guilty” verdict-did it take the cost of bringing this case to court, the time of the professionals involved and the stress & worry claire had to endure to state the obvious? Yes she was aware the childrens attendance record was “only” 76% ( Or there abouts )  A score that would be given an A or B grade if achieved in an A’ level exam. We’re talking about a 9 & 7-year-old not kindergartener’s Theres no way the kids could ‘wag’ ( as we use to call it ) off school without Claire knowing although I wouldn’t put it past Little Man giving it a ago 🙂

This was a “criminal” case that in my opinion was criminal only in the fact that it was brought to court at all!

What was achieved? Apart from Claire having to pay a fine ‘Which in practical terms can only have an effect on the kids welfare! Money spent paying the fine is money that would have been spent on them? Well lets think…..erm…….Oh yes that’s right A BIG FAT NOTHING. So it was confirmed Claire knew the children had been absent on numerous days-So what? Does that do anything to resolve the matter or at least improve it? Again a BIG FAT ZERO! The reason for the children being absent is rooted in the diagnosis of Aspergers. A court case isn’t going to do change this fact! & since Claire is already doing all she can to educate herself on all areas of Aspergers, Plus asking for help from numerous professionals, Society’s, Groups etc I can’t see how she can do more!

contributor: Donna Jordan.

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