Asperger's update

I have been so proud of Barney lately. Last week he celebrated his 7th birthday The changes he has made in the last year have been phenomenal. It was just a year ago that he was practically housebound through fear and anxiety. A lot of this was due to sensory issues that we weren't aware of at the time. He has spent 9 months now taking a medication that the consultant said he would only give him for 3 months. In this time he has had a lot of therapy in the form of schedules, timers, breathing exercises, visualizations etc, from the Autism team. And he has also been attending weekly Occupational Therapy sessions. (see the photo below)

Well, this week has had his review appointment with the consultant; the same person who diagnosed him. He said that he could see a remarkable change just by talking to Barney. He really has been like a different boy, and it has been wonderful to watch him enjoying his childhood, instead of being crippled by fears and worries.

But because he is doing so well Dr M decided that it is time to take him off of his medication. Barney immediately panicked and curled up in a ball on his chair begging the doctor not to stop the medicine. I expressed my concerns that I was worried he may psychologically feel that he can't cope, and perhaps a placebo might be a good idea. He decided to wean him off the meds over 3 weeks. So he is now taking them every other day. The idea is that on the days he is not having medicine he will see that he is coping and gain confidence that he can cope without.

He is on day 4 of this alternating meds schedule and the changes are already causing concern. Thankfully, the anxiety hasn't returned yet, and for this I am truly grateful. But he is once again, very suddenly, a typical 'Aspie'. I hadn't realised that the medication had not only reduced his anxiety, but totally altered his personality. Whilt I love the aspie aspects of this personality, I am also very aware that they make daily life more of a challenge for him; both at home and at school. The staff at school have already called me in to discuss the difference. Then yesterday he went to what was supposed to be his last OT visit. But after seeing the change in him she decided she couldn't end his therapy yet. He was, to quote her words "a different child". He wouldn't listen, wouldn't take instruction, cried and sulked when he couldn't do something, answered me back rudely, had huffs and tantrums, dangerously hit at the equipment and wouldn't co-operate. He was also totally hyper, seeking movement and deep pressure stimulation and generally manic. The OT stood with her mouth open for most of the session and said she had not expected such a dramatic change. I felt like crying when I came out. What happened to the polite, well behaved child that I had been taking to OT for months?

Anyway, things could be a hell of a lot worse, and if they continue like this then we will all cope just fine. But I have a deep fear that things will go right back to the way they were, and I really don't want that for him, or for the rest of the family. Fingers crossed.

Back to school

Wow! Barney is like a new boy! Anyone who reads regularly will remember the trouble he had last year at school. At the worst point it was taking me three hours to get him into class. The very worst day ever resulted in a horrific situation where he threw himself at the classroom doors and window - a very upsetting experience for him, myself and the other children in his class, which resulted in his teacher crying at one point.

So as you can imagine I was dreading the new school year. Barney started P3 last week. His class is in a different part of the school, his morning routine has totally changed. Instead of taking him into school late and sitting in the staff room with him until he was ready to go in, I am now taking him directly into the classroom ten minutes before the other children arrive. We put his timer on, sit and read a story and then I leave as the children come in.

I can not believe how well Barney is doing! He hasn't shed a single tear. He hasn't panicked. He has been brave when he felt scared. Basically he is doing far better than I ever imagined possible! I am so proud, and so releived. The school situation last year resulted in him being medicated and was a really worrying time. This new Barney is just doing wonderfully.

I don't know if it is because he is a little older, or because of all the therapy, or the medication. Or even because there is less stress in the house now that his Dad is living elsewhere. But whatever it is (perhaps a combination of all the above) it is working wonders. And I am so, so, happy about it. I hope it lasts. Well done little Barney.... Mummy is once again, so proud.

Proud Mummy Alert!

I was so proud of Barney this week. He attended a summer scheme especially for kids on the spectrum. His therapist phoned to say there was a place on it and she felt it would be really beneficial for him. The poor kid was a nervous wreck. A new situation, new people, the unknown - an Aspie nightmare.

I convinced him to give it a try as I know theres not a hope in hell of him attending a regular summer scheme, and I thought mixing with some other kids who think like him might help him. He only gets to attend twice before school starts. The scheme has just 4 children in it, so it's pretty intense. Four kids and six adults! That's some ratio! When he found out there would only be three other kids he felt better about going, but when he walked in and saw all those adults he freaked out. He was very upset for 5 minutes or so but then F (his therapist) and I managed to persuade him to go in, with his timer, for 5 minutes at a time, whilst I sat in the kitchen.

I was so proud of him for giving it a go. After 5 minutes he was having the time of his life! I could hear him above all the other children, laughing and giggling. All the kids helped make him a Spongebob scene to get settled in, as Spongebob is one of his favourite things.

Each child is making a huge collage of themselves. They drew around the kids on a big sheet of paper and are filling in the outline with photos, art work and various different activities. Next week he will get to bring this life size montage home with him. He can't wait to go back.

Since he was so brave, and I was so proud, I bought a huge chocolate cake to celebrate :) This made him very happy. He came out of the summer scheme saying "Mum, those kids all seemed normal to me!" And so I was able to say that yes kids with autism are just like everyone else in lots of ways, and that autism is only a little part of them.

Occupational Therapy is Fun!

It's been so long since I've updated on all the general goings on. Today I'm playing a mini catch up, although I've missed absolutely heaps. I'm in bed with a miserable cold today, so blogging for a bit to pass time.

Barney has started seeing an Occupational Therapist at Lurgan Hospital. She specialises in helping children on the autistic spectrum. So far he has been to two appointments and absolutely loved every single minute. It's just so much fun. At the first appointment he had to complete a sort of written test. He sat at a desk and copied shapes and drawings with a pencil. Then he drew a picture of his Dad. The OT noticed that he really pushes the pencil heavily into the paper, a common problem with children on the spectrum who may press either too lightly or too heavily. From watching him she was able to notice that he needs deep pressure but can not bare light pressure. That makes perfect sense now I think about it. He likes deep squeezes and cuddles and is very heavy handed, often hurting himself or others without meaning to. He is quite clumsy. But he hates it when people brush past him, or touch him lightly.

So she has been doing some deep pressure therapy with him. The idea is that children who need deep pressure get anxious and need the pressure to let off steam. I'm not sure I'm exactly describing it correctly! But she said that if he gets anxious at school, coping with the noises and hustle n bustle, that a session of deep pressure therapy will get the stress out and leave him feeling more able to cope. So she has been teaching us ways to do this. And Barney loves these ways! They involve rolling around on peanut shaped balls, putting heavy pressure on his arms; wheelbarrow walking; walking with his arms in a big hammock; hanging upside down from rubber rings; and skateboarding on his belly with his arms.

As you can imagine, there is not much that little boys like more than this sort of thing! He also crawls around on his belly, comando style, until huge weighted blankets, feeling for beanie babies in the dark. The OT makes everything fun. In the first photo he is in a hammock collect magnetic fish with a stick and putting them into a puzzle. So he is using deep pressure on his arms without realising that he is actually doing exercise or therapy.

The OT noticed that when she swung him in the hammock, without him using the deep pressure, he went absolutely hyper - giggling hysterically. She got the giggles too. He was manic. Then when she asked him to use his arms to move his body he calmed right down. She said this was a sign that movement really stimulates him. Since this was fun it made him giggle, but in another situation too much movement could cause him extreme anxiety and give him the panic attacks that he gets. I thought that was very interesting. Movement could be his body driving along in a car, people darting about near him (as in a supermarket or at school), etc. So when he gets panicked he needs deep pressure.

She taught me some deep pressure massage to use on his hands and arms. Although apparently I don't do it as well as she does - or so I'm told! She said that light touch would totally send him nuts, so it is important to use real hard, deep pressure. When she massaged his hands for the first time she said his wee finger muscles were the tensest she had ever felt in such a young child... obviously clenching his fists a lot with stress. Within seconds of her touching them they relaxed right out. It was quite amazing. She only spent about 1 - 2 minutes on each hand, but it sent Barney into a deep relaxation mode and he asked to lie down and sleep! She covered him with a weighted blanket and left him chilling out. I was quite astounded! It never seems to have such a great effect when I try it on him though!

The other thing I wanted to quickly blog about, was the recent meeting I had with Barneys teacher and SENCO. I told them how hard he finds sitting with the other children and that I feel that he is putting all his mental effort into coping with the noises and touch of other kids that he isn't reaching his potential with his work. I mentioned that Barney would like to sit on his own table, but didn't expect them to really like the idea. But they did! He now has his own special 'work station' at the side of the classroom. It is a desk with three tall sides on it, facing away from everyone else. It has his photo on it and different visual time tables. The idea is that he can sit there and not be disturbed visually by anyone else. But he is allowed to go back to his old table any time he wants to. I had thought that they might disagree with the idea as they don't want to make him different, or seperate from the other children. But I pointed out that Barney is really struggling with his friendships at the moment, and is constantly falling out with his friends. I think this is because he simply can not handle a full 6 hours with the kids. When I suggested that if he worked seperately from them, that he might then have the energy to play with the children at break time, and maintain his friendships, they all jumped at the idea. So we are giving that a try for a while. He is very pleased about it.

At break times and lunch times Barney no longer plays with the other children. His 'friends' are the dinner ladies, who all know him by name and know every detail about his life. He would much rather walk around the playground chatting to the dinner ladies than mixing with the other children. I guess that is just very typical Asperger. He has always enjoyed the company of adults far more than kids.

Social Story – Holiday to Turkey

When Daddy and Barney recently took a trip to England, I made a laminated social story. A social story is a tool used with kids on the autistic spectrum to help them visualise in advance something that will happen. We don’t use them for everything with Barney, but we have found them very useful for the bigger things in life, as he gets very anxious about new experiences. In this situation they work really well. So here is the social story I have made for Barney about our trip to Turkey in one weeks time. The front page has the days of the week to countdown. This has a velcro arrow with it, which you can’t see in the photo. He moves the arrow along each day and it helps him to visualise how long it is until certain things will be happening.

Pages 1-7. Laminated.

Back

It's been a week since my last blog post, and two weeks since Barney started his anxiety reducing medication. And what a two weeks it has been. Things are no better. Barney is not going to school well. The Special Needs Teacher is phoning me up to 3 times a day (before school, during and after school) and nothing seems to be settling him.

Today is his first full day back at school. As usual it was horrific. As soon as we get near the school doors he started panicking, clinging on to me, begging me not to make him go in. He cries, screams, shouts. Holds onto me for dear life whilst the teachers try to peel him out of my arms. All the children in the cloakroom are watching him, whispering, and wondering whats wrong. He's screaming 'I cant leave you Mummy, I just cant be without you'. It is heart breaking.

Yesterday some boys from an older class were making fun of him; laughing at him and calling him a Mummy's boy; pointing and saying 'there's the boy who wants to take his Mummy to school with him!' He was very upset about that, and I don't blame him.

Today was possibly the worst so far. Probably because he knew that he was expected to go in for the full day. His anxiety started in bed as soon as he woke up. Usually it's not too bad until we get into the car. He was met at school by the SENCO and the principal, who both tried in vain to prise him away from me without too much drama. This was the first time the principal had seen whats been happening.

20 minutes of crying and pleading passed before Mrs M (the SENCO) decided to take him into the classroom whether he wanted to go or not. She told him that I'd wait in the cloak room until he was settled. If there hadn't been children coming in and out I think I would have sat down on the cloakroom floor with my head in my hands and just sobbed my heart out. I could hear his cries from the classroom. And I could see the worried looks of his school friends. He kept escaping from Mrs M and throwing himself at the classroom door. I would see his wee horrified face at the glass, pleading for me. Mrs M kept putting herself in the way of the door whilst he grappled for the handle. He kept throwing himself towards the door, begging to leave. It was really hard to see.

I felt awful for him that his school mates could watch him like that. So publicly upset. It wasn't fair on him or the class.

Mrs M finally came out and said that Barney was expecting me to go to the staff room until he had settled down. I told her that this couldn't continue as it wasn't fair on Barney to be humiliated like that every day in front of all those children. Mrs M's response was that it wasn't fair on the other children to have their day disrupted so badly. She always seems more concerned about the other children. But her role is as the special needs teacher, so you'd think she'd be more concerned about him.

In the staff room the principal came to talk with me and Mrs M. We came to an agreement that trying to get Barney into school through the usual cloakroom area just isn't going to work. He associates that whole entrance with a place of panic now and we are never going to be able to get him in that way. So the principal, and I decided that the best thing would be for Barney to come into school 20 minutes later than the other children - to avoid the hustle and bustle, pushing and noises that autistic children often find so distressing. I will bring him into school through the main entrance, past the school office and up to his classroom door without going anywhere near the cloakroom or back entrance that they usually use. I will take him to the double doors just outside his classroom, which is also where the school office is. I will stay in the school office for 20 minutes every day, so that he knows I am there whilst he settles. I am hoping this will stop him from going into panic. But if he does panic, he will be able to panic in the staff room with me; away from prying eyes, worried children, and the sneers of the older nastier kids.

Today at 1.45 I am going in to school where we are going to do a walk through of the process so that he knows what to expect. We are going to start at the car and do an entire walk through the process, so that tomorrow morning is less worrying for him.

I hope that this works. I know it may not work immediately. But as I have been trying to stress to Mrs M; we need to find a routine and stick to it. Doing something different every day is not going to succeed as autistic children need that routine. They need to know what is happening, and we need to stick to it. It might take a few days, or even weeks, but I'm hoping there will be some improvement.

In the meantime, Barney has decided that he just can't do school and that I should be home schooling him, like I did with his older brother and sister. I have to admit that if this continues I shall be tempted to do so. I mentioned to Mrs M that Barney wanted to be educated at home. Her face lit up and she laughed and said 'oooh well wouldn't you?' I thought to myself 'yes that would make your life a lot easier wouldn't it'. Honestly, through this whole thing all she seems to be worried about is how Barney affects the other kids. And for someone who has an autistic child of her own she seems to have very little understanding. For example- when Barney is anxious it takes him longer to speak, or formulate replies to questions. This is pretty normal for an autistic child, even when not anxious. The autism alert card that I was given even says on it to understand that there may be a delay in replying, and that people should be patient and allow for this. But Mrs M is so manic, and so noisy in general, that she asks Barney questions and when he hasn't replied in an instant, she just carries on talking.

Ass Burglars

Barney and I had such a laugh when we realised he was saying ‘Ass Burglars’ instead of Asperger’s. We rolled around on my bed in fits of laughter.

Today Barney had his Ass Burglars appointment. Another one that we’ve been waiting months for. He and I went to the children’s hospital in Lurgan where he played with a lovely lady who assessed his social and communication skills whilst I talked grown-up stuff with the doctor. Once again I answered the same questions, for an hour and a half; whilst Barney played Guess Who and Jenga, and looked at cards of peoples emotional expressions.

Then they asked Barney and I to wait outside whilst they discussed their findings. 15 minutes later we were called back in, where the doctor explained that there is no question what-so-ever that Barney does have Asperger Syndrome. He said it was blatantly obvious to him. The speech therapist said that Barney had talked one on one to her about things he was interested in and that his eye contact wasn’t too bad once he got relaxed, and that his sentence formation was very advanced for his age. But his social understanding was lacking. He was able to distinguish emotions in pictures, such as anger or uspet, but wasn’t able to give reasons as to why someone might feel angry or upset, etc.

They had already had discussions with his teachers at school via the phone. Now that he has been diagnosed the school can receive extra funding to provide additional help for him. The doctor said that his anxiety is typical of a highly intelligent Asperger. He said that the world is confusing to him, but that because he is so intelligent he is constantly trying to work everything out and make sense of things. Which means that his wee brain never gets to relax, so he is in a constant state of anxiety and exhaustion.

The doctor also advised me to get a prescription for Melatonin. I will have to look into this some more. But he suggested that it is helpful for children with autistic spectrum disorders and ADHD type conditions. They don’t produce enough of the hormone melatonin to get to sleep at night and this is the reason why he is still trying to get to sleep at 11pm. And whilst he is lying in bed all he can do is think. So he thinks anxious thoughts and gets upset and then still can’t sleep. The melatonin is supposed to regulate the bodies inner time clock or something. I shall have to read up on it.

So what now? More of the waiting game. In about 9 weeks time two different autism bodies will contact us; one via the education authority and one via the health service. They will liaise with us and the school to provide assistance and help where needed. When Barney is 8 he will attend some social courses to help him interact better with other people. People will be coming out to our house to help teach us how to deal with panic attacks and anxiety, and to show us how to prepare timetables for Barney, and various different methods to help him. And that’s about all I know for now. They gave me a list of books to buy, but they are all rather costly at this time of year!

Edit - the doctor also said that he will be sending me a copy of his diagnosis letter. So that should be some interesting reading.

Autism Appointment

This morning Barney had his appointment with the paediatrician who specialises in autism in children.  He missed the morning of school and we headed off at the crack of dawn to miss the school traffic on the way to Lurgan. He was a bit nervous and panicked just a little when he realised both Daddy and I would be going, and not just me as he had imagined.  We got over that by letting him sit in the front of the car while I drove (Daddy being relegated to the back with Rosie). 

The appointment started with the four of us and the doctor. Dr N had a little chat with Barney who sat at a little table playing with some cars. He asked him questions about school, his interests, his family etc. Then he asked Marty to take Barney and Rosie for a walk while I answered questions to form a history. 

So I spent an hour and a half answering questions about every stage of Barneys life so far.  A lot of them were hard to remember the answers to. What age did he sit, crawl, walk, talk? How did he transition from breast to bottle, from bottle to solids, from purees to real food?  It’s hard to remember such details after four children!

He asked about all Barneys symptoms. I don’t think symptoms is the right word, since he doesn’t have an illness, but I’m lost for the right word at the moment.  For every ‘symptom’ that I gave he would go back over his life bit by bit to see when those symptoms started and how they progressed. For instance, we spoke about how he can’t handle being given a meal at dinner time if he hasn’t been told in advance what it is.  So then he asked about his eating habits as a baby, then a toddler, then at age 3, 4, etc.  So the whole thing took quite some time.

We discussed his difficulties with interacting with other children, his panic attacks, his hate of surprises, his ‘obsessions’, his imagination, how he plays, how he talks, how he does a jigsaw puzzle (apparently there’s more than one way to do a puzzle!) He asked me a million questions and I answered them as best as I could. He also made me think a little. I said that Barney has a good imagination, but the doctor questioned that and asked me to watch and see whether the imagination he has is really his own thoughts, or a re-enactment of things he has seen and heard elsewhere. When I thought about that it did make sense.  He said that many people don’t notice the difference until it is pointed out to them.

Anyway, he wrote a lot of notes and is going to speak to Barneys teachers this week. He said that many people live perfectly happy lives with Asperger Syndrome  (which he kept stressing was not an illness and is a perfectly normal way to be – which I already knew) and do not need a diagnosis. He knows a lot of children whose parents haven’t gone further in seeking a diagnosis. But he felt that due to the anxiety and panic attacks that Barney has regularly, he really does need to be seen further and to get a proper diagnosis so that he can receive help and we can all learn how to reduce his anxiety.

So Barney will now be seen at the ‘communication clinic’, which he said is a clinic solely for children on the autistic spectrum.  They will come out to our home and out to the school.  He will be given therapy to help with the anxiety, and should start being seen by the clinic within a couple of weeks.  I can’t wait to start getting some help and some answers. So far all I have done is answer questions, which is an understandable part of the process, but what we really need is to learn more about Aspergers and find ways to help Barney lead a less panic stricken life.

Rosie’s Charm Necklace…

I wanted to post a photo of the charm necklace that was made on Rosie’s naming day. It has charms with wishes from all her family and friends. There are a couple more still to arrive (three, I think – there’s just about room for them!) It is an 18 inch necklace and it’s pretty heavy now. She is one lucky girl.

Barneys first day back at school went pretty well in the end. He was totally nervous, and anxious, but managed not to have a panic attack. Writing the letter to his school teacher himself (see post below) really seemed to help. In future I shall try this method with him to see if it helps calm him in other situations.

He loved his teacher. So much so that he came home and made a present for her! He got a box (the one our new kettle came in) and painted it, then stuck gold paper, lolly sticks and red glitter all over it. It was pretty big, and very colourful. Today he took it into school with him, and the teacher must have liked it because he came home with a special sticker and a Pirates of the Caribbean light up pen! He has had a few nervous outbursts at school where he has started to panic and felt sick (when moving rooms or going to assembly etc) but the teacher has managed to calm him down pretty well. She lets him sit with her in assembly. Barney says she lets him do anything he likes. He is very impressed!

I was also impressed as she phoned us after his first day of school to let us know how he got on. I am going in on Friday to speak with her. So far so good.

I was reading on an autism site last night about how the obsessive lining up of toys can often be one of the first signs of autism in a child. Barney still likes to line up his cars, but not as much now as he used to. I remember when he was 2 or 3 years old he would spend literally days at a time lining his cars up in various straight patterns. He could fill the entire hallway with his perfectly straight geometric car patterns. Once he had lined up about 200 cars he would start again with a different pattern. Even now, whenever we are going out for the day somewhere where he will need to entertain himself, we always take a big bag of cars for him to play with.

Back to School blues

We all knew that going back to school was going to be hard for Barney. His problems seem to have doubled in size over the summer, poor lad. Yesterday morning the panic attacks started… the very second he woke up. He knew it was the last day of the summer holidays, and hence it was time to start panicking.

Marty woke me up after an hour of his anxiety. He was shouting at Daddy, hyperventilating, just generally not coping. I managed to take his mind off things for a while by letting him play my Fish World game on Facebook. But during the day he kept reminding us all of how scared he was about starting P2.

I thought it would be a difficult night last night. Marty went to bed early and I got Barney all settled into bed. He watched his DVD and came down a few times. I could see his anxiety rising and his worries about school getting bigger. I told him that I’d be sending him in with a letter to his teacher explaining about his Autism assessments and how he feels anxious. Then he suggested that he write a letter to the teacher himself. So I went with it. He dictated to me what he wanted to tell her. Then he finished it off by writing his name and some kisses, awww! His letter went along the lines of …

My name is Barney. My mummy is writing you a letter but I wanted to write one too. I want you to know that I may have aspergers. I am really scared every time we have to go to the assembly hall. I am scared of going to different rooms. I am afraid of starting p2 for the very first time. When I panic I feel nervous and scared. I think I am going to be sick, and I think I can’

t breath. I panic when people cough, or cry, or are sick, or when there are loud noises, or if people back into me or touch me when I am not expecting it. I have my ear defenders in my school bag. I am looking forward to being in your class. I am half excited and half worried. From Barney.

As soon as he had written it and put it into his school bag he totally relaxed. He went to bed with no bother and slept all night!

This morning he was anxious and scared but managed to get to the school without any meltdowns. He kept reminding me how scared he was, and I kept assuring him that I wouldn’t leave until he was happy and settled with his teacher. I know the teachers don’t like the parents going into the playground with them. They expect them to be dropped off outside the fence, but I didn’t care. There was no way Barney could make his own way in without losing control. So I took him to his teacher and explained to her how anxious he was, then watched as he held her hand and went inside, glancing back at me with a face filled with worry.

Now I’m awaiting 2pm to see how he got on. I do hope he doesn’t struggle too much. Poor little lad.

What is normal anyway?

Since the naming ceremony things have been starting to return to normal. Next week the kids go back to school and life will be back to normal. Not that anything in this house is ever really normal. And if it was I'd be totally bored.

Yesterday we took the 3 youngest kids to Cheeky Monkeys in Newry. How did we manage to get Barney out of the house? Well, we just asked him if he'd like to go anywhere. And that was his choice. But it only took him a millisecond to decide exactly who would be going in his head. I immediately told him that we were all going (minus Jimmie) but he had already imagined that it would be only him and his Dad. So panic ensued within seconds. I had learnt my lesson about making sure he knew exactly what the plan was, but it seems that if the image of what will happen has been in his head for even a moment, then anything that differs from that is a change of plan that he can’t cope with.

Anyway, we made it to Cheeky Monkeys. I asked if Barneys big sister Tarja could go around the soft play area with him, despite her being too tall for their height restrictions. The lady was about to say ‘no’, when I said to her ‘it’s just that he is autistic and gets a bit panicky if he is alone in these places’. She immediately said ‘yes that’s fine’ and didn’t even charge for Tarja. It felt weird saying that he is autistic. I’ve never had to say that before and I felt like a bit of a con artist for some reason.

A good time was had by all. Barney totally wore Tarja out, dragging her everywhere at full speed. The problem was the she couldn’t stand upright inside the play area, so had to run at his speed whilst stooped down! Rosie enjoyed looking at all the bright colours and screaming children, whilst we fed her lunch to her. Everything was going swimmingly until Barney sprained his ankle. A member of staff helped him down to us. The problem wasn’t so much that he had sprained his ankle, but that he expected an ice pack for it. I couldn’t work out why he was so adamant about getting an ice pack until he explained that when he hurt himself at school an ice pack was provided for his nose; and when he hurt himself at the igloo soft play area an ice pack was supplied. So Barney was expecting an ice pack for his wounds. And nothing was going to make him stop shouting until he got one. Once again he expected something to happen a certain way and couldn’t cope when it didn’t. We carried him out to the car and he got home without any serious injuries.

Today I spent half the day making more baby food for Rosie. The last batch had run out, and she’s eating lumpier foods these days. Barney wanted to help, and so he peeled onions, carrots and potatoes for me. I made such a fuss of him for helping. What a great big brother. We made a huge batch of cauliflower cheese with pasta, roast chicken dinner, tomato and veggie stir fry with rice, and bacon and lentil stew. That should keep her going for a while!

We really want to go out tomorrow as a family, but Barney is not keen on it. He wants to go to somewhere that is within Banbridge, so that he doesn’t have to spend so long in the car. The trouble is that there is nothing to do here! I’ve suggested the aquarium and various places but they all involve an unwanted car journey.

Here are a few little piccies that Marty took today. He took little Rosie out for a drive and stopped to feed the swans…

First Behaviour Support Appointment

This morning we had our first behaviour support appointment for Barney. It was an interesting meeting. Barney had no panics leaving the house, and arrived as calm as anything! He was even excited about it.

The psychologist sat us down in her office and asked Barney why he was there, to which he replied with "to see if I have Aspergers". She seemed surprised by his answer, and I got the impression that she thought 'oh here we go, a set of self diagnosing parents who haven't got a clue'. And I was thinking, 'oh dear, this isn't going to go well'.

Basically the hour was spent with her asking us questions about his behaviour, and us answering them. Occasionally she would ask Barney a question such as 'how do you feel when you have a panic attack?' She wrote copious amounts of notes about every aspect of Barney's behaviour, always stopping to ask him how he felt about things. Barney was very well behaved although he sat with his back to her whenever we were talking.

She suggested a few helpful ideas to try out with him. She suggested that when he is stressed or anxious we don't try to cuddle him, hold him, or touch him in any way as it would be a bit of a sensory overload for him (she had noticed in the meeting that he didn't like being touched if he wasn't expecting it) So she suggested to Barney that when he is feeling panicky, if Rosie is crying or whatever, that he goes out and bounces on the trampoline. She said that bouncing was a great calming tool for autistic children. So we are going to give that a try. She also talked to him about deep breathing, and things that we have already tried.

Well, to cut a long story short, at the end of the session she said that there was no doubt in her mind that Barney obviously did have some form of autistic spectrum disorder. He is being referred to Lurgan Hospital to an autism specialist /paediatrician. It can take up to 13 weeks to be seen, but she said that it would be put through as fast as possible. I asked how long it would take to get a proper diagnosis and she said 'in Barneys case, not long, it seems pretty obvious'. He basically ticks every box.

So he is waiting now for his referral to these people in Lurgan. They will talk to us, talk to his school, come out to the home to see him, go out to the school to see him. She said that she doesn't think it will be a long process to get him diagnosed, and that he will eventually get a statement of special needs for education (I'm not sure what the exact term for that is) so that the schools will have to make allowances for his condition.

I feel greatly relieved that we are at last receiving some help, and that some professionals have now agreed with us that he does indeed have Aspergers. There will be lots of courses and help for us once he is referred, which at this stage we really do need.

I'm not sure whether to be relieved or excited, or nervous!

Today Barney was given an appointment to see the child psychologist at a local clinic. But the appointment wasn't for until the end of September. I spoke to the receptionist on the phone and explained that I was at my wit's end, and didn't know what to do, and that it was breaking my heart to see Barney so desperately anxious all the time.

She called me back later today to say that she had spoken to the psychologist and she wanted to see Barney asap. She is going to see him tomorrow morning! She wants to see both of us and Barney together to start his course of assessment. I am relieved that we are finally going to receive some help. Thank goodness. Barney is actually excited about going. After a major panic attack about going to the shops I asked him why he wasn't also panicking about the appointment. He replied with "because that lady is going to help me."

Days out are becoming a nightmare

6 weeks into the school holidays and I am desperate to get the kids out to a few places. Barney has been waiting all summer for the 'Tall Ships' event in Belfast. As well as that we had planned a trip to the aquarium, a spot of camping (if the weather improves!) and a few other days out.

But now, I'm not quite sure what to do. We have learnt recently that if we spring anything on Barney at the last minute, he goes into complete panic mode and refuses to get in the car. We have to sort of entice him into the car against his will, and drive off with him hyperventilating and thinking that he's going to vomit, until he settles down, after about 5 minutes. So we have been making sure not to spring any surprises on him when at all possible.

We have been told that planning things in advance will help him to cope better. That did work for a while. But now he is even panicking about these things. After begging all summer to go to see the tall ships, he is now panic stricken about it. We were looking at the website details of the event, and he realised that it would be crowded, and suddenly said he couldn't go any more. He just wants me to say "ok, we won't go". But if I say that to everything he will become a hermit!

So I looked into it further and found out that if we find a spot along the coast of Holywood, Bangor or Carrickfergus on Sunday, we can watch the tall ships sailing out of Belfast whilst having a family picnic and avoiding the fun-fairs and attractions. But even this sent him into panic. When I say panic, I mean that he is running around the kitchen, with rapid breathing, begging us not to make him go.

So I questioned him further. If it's not the crowds that are bothering him, what is it? He was now panicking about the car journey there. And the fact that he will spend all day feeling nervous and sick about going out. I can't blame him for being nervous about car travel. After all, he was recently in a car that caught fire! That's enough to make anyone weary of cars. And now he says that he can't go anywhere that he hasn't been before.

What am I supposed to do? I can't let him become a hermit, and yet I feel bad forcing him to go through such anxiety.

We have received a letter from the behaviour clinic and they are going to see him soon to begin his Aspergers Assessment. Lets hope they have some advice that helps, because right now (despite reading so many books and trying my best) I feel totally lost.

Noises and sensory issues....

Today I mentioned to Barney that Ice Age 3 is on at the cinema, and perhaps he would like to go see it sometime. I told him that we wouldn't go today as I knew that a sudden trip somewhere exciting like that would make him anxious. So I suggested he pick a day himself. He pondered for a moment and then said "I think I will wait for it to come out on DVD as I will be sick if I go to the cinema". I remember he had a severe panic attack with nausea last time he went to the cinema but I had presumed that was all down to the fact that it was an unplanned trip. I asked him what was it about the cinema that bothers him. His Dad suggested we plan it in advance, go really early so that he could get sat down and settled while all the lights were on and the cinema was empty. But still he didn't want to go. He said that it is the noise of the cinema that makes him feel sick. He is still reacting very badly to noises, going into utter panic if Emily cries. He wont let me play music in the car when we are out driving. If anyone shouts he panics and begs them to have a 'golden moment' or quiet time. I am wondering whether to purchase a pair of these ear defenders, as I have heard that some autistic children use them to protect their senses from loud or stressing noises. But I'm not sure whether he might become too dependant on them and start wearing them 24/7. And I don't want to buy them if they turn out to be a waste of time too.

A call from the Occupational Therapist.

Yesterday Barney got his first ever school report and I had a proud Mummy moment reading it. His principal said "this is a super report Barney - you are clearly a clever and kind boy, and I hope in P2 you feel more confident about letting others see that too! Well done Barney." His teacher wrote lots of nice things about him being hard working and generally a good boy. He seems to be doing his work well an excelling in every area except the social side of things. His teacher said "Barney has made steady progress in all areas this year. He can be a very anxious little boy and requires lots of reassurance and praise from adults within the classroom. He is to be commended for his excellent manners and behaviour." Well done Barney on being such a good boy this year and on doing your best and working your hardest.

Today the schools Occupational Therapist phoned me. She had been spending the day with Barney, watching him in the class setting, and talking to him on his own. They sat and played puzzles together in her room whilst he chatted away about his interests. She has been watching him at school for a few weeks, after his teacher requested that he receive some help. I told her about Barneys panic attacks, and told her about the recent discussions I'd had with him about routines and the unexpected. She seemed happy that I was on the same wave length as her, and that I had talked to Barney and read some books about Aspergers. I got the impression that she is often met by resistance from some parents when told that their child may need extra help.

She has made some 'social stories' out for Barney. He brought one home today which she went through with him. It's basically a laminated A4 page about the 'what will happen when I come back to school after the summer?' It has a photo of Barney at the top, and a photo of his new P2 teacher, with her name. It explains what happens over the summer holidays and what will happen in September. They plan to give him these visual social stories regularly to help him get used to routine at school. The OT said that he gets extremely anxious every time there is an assembly or something unexpected. Just today she saw his face when it was time to go to the assembly hall for the sports day prize giving. She said that he started to cry and the boy sitting opposite him said "don't get upset Barney, I will look after you" and took his arm in the queue. How touching. What a lovely little boy!

She said a lot more but it would take me forever to type it all. I have been impressed with how the school are dealing with this. They seem to be so much more aware of these things now than they did back in my day. Barney has been listed on a 'code of practice'. He is on stage 1, which basically means that the OT will take him out of class once a week and spend time with him making special targets for him to achieve. She will help him with social issues and any worries he has. Eventually at stage 3 outside agencies are called in to assess the child. But that is already underway in Barneys case, and she hopes that the psychologist will see and assess him over the summer so that it is all done before school restarts in September.

School has finished for the older two. Barney doesn't finish until Tuesday. Roll on the summer holidays! And Jimmie's fourteenth birthday, which is on Sunday.

For the first time since Rosie was born, six months ago, I am starting to feel like my old self again. Having a baby certainly takes it out of a woman for more than the nine months that she is pregnant! Rosie moved into her own bedroom this week and seems to be sleeping quite well in there. It is nice to be able to sit in bed with a good book at night again. I haven't done that for so long as we had to keep the room dark for the sleeping littlun.

At the moment I am reading 'The Meaning of things - Applying Philosophy to Life (a great little book that is written in bite sized chapters and isnt hard to understand - so far I have read about death, sorrow, prudence, moralising, tolerance, courage v cowardice and lying - it really is very thought provoking) I am also delving into 'Ten Things Every Child With Autism Wishes You Knew', which is eye opening and enlightening. I've just finished reading 'Can I Tell You About Aspurger Syndrome' which was easily readable in an afternoon. The book could almost be written specifically about Barney. Tarja and Badger are going to have a read of it over the summer holidays. It is a great book for helping siblings, parents, family or friends to understand Aspergers more. I'd recommend it to anyone who's child is affected by Aspergers.

Barney has had a good few days, after the meltdown he had at my sisters house on Saturday. It was Badgers 14th birthday party (I know! Fourteen! How did THAT happen?) so Barney, Rosie and I headed off to my sisters house for some peace and quiet while Marty ran the party here. I knew Barney wouldn't appreciate the noise of the teenagers. So we took a trip to Ikea in Belfast then headed off to my sisters. The second we arrived Barney (being typically outspoken and straight to the point - a trait of Aspergers, so I've read) announced that the house wasn't tidy and smelled bad. He then commenced the cleaning of my sisters kitchen. He washed up the dishes, cleaned the oven, washed the bins and swept the kitchen floor. Barney has always stated the obvious very openly, and people often think he is just rude. No matter how much I explain to him how to be subtle or discrete, he just doesn't get it. I've been reading that this is a very common sign of Aspergers.

Anyway, we had a nice meal cooked by my lovely little sister, and we played with her cat. All was well until it was time to go home, late at about 9.30pm. We packed our bags and headed out to the car, all was well. I strapped Rosie into her car seat, my sister strapped Barney into his booster seat. I turned the engine on and opened one of the electric windows. Suddenly Barney had a complete meltdown. Goodness knows what triggered it? Me opening the window without telling him? The noise of the engine? I've no idea, and nor has he. He started screaming that he had to get out, undid his seat belt, opened the door, ran out into the road, ran into my sisters house screaming that he was going to be sick. He ran into her bathroom and stood over the toilet hyperventilating, shaking and begging me not to make him go back outside.

I talked him down and we went back out to the car. I strapped him in again. Got back in myself. Said goodbye again to my sister. And then the same thing happened again. He ran back into the house and told me that we would have to live at this house as he couldn't get in the car to go home. I asked if he would feel better sitting in the front of the car next to me. I told him we could chat all the way home. He liked this idea and so I moved his booster seat to the front. But as soon he tried to get into the car he started panicking again. Poor Rosie was in the car waiting to leave, and was tired and grouchy. This time I held him and stopped him from running into the house. I didn't really know what to do. I wasn't sure what the problem was or how to help him. I had to almost drag him into the car kicking and screaming. I managed to distract him by telling him step by step what was going to happen - "ok Barney, I am going to strap you in, then I am going to walk round to the drivers side and get in, then we are going to wave goodbye, then we are going to drive home, and we can have a lovely chat on the way home together, then we can tell Daddy all about our day, but then it will be late so you will have to get your pyjamas on, then you will go to bed." I'm not sure if I was distracting him or whether knowing what was happening next helped him, but we got the car moving. He was concentrating on taking deep breaths in and out, and rubbing his legs to calm himself down. I was half scared he would try to jump out of the car while it was moving.

We managed to make it home by me talking to him about all the things we had done during the day. When he was settled and seemed happier I brought up the subject of what had just happened and we tried to figure out together what was going on. He didn't seem to know what had triggered this particular panic attack. He kept asking me 'Mummy, what is wrong with me? Why am I like this?" I felt so torn for him. So I started to tell him how everyone was different and that we all have different ways of thinking or coping with things. I said to him that there are some people who think very differently about the world and explained a little to him about Aspergers and Autism. He had this wide eyed expression on his face the whole time, then exclaimed "Oh Mummy, that's just like me, I must be an Aspergers person!" He had a look of total relief on his face. I almost cried.

So I asked him a few questions such as 'what happens at school that makes you panic?', 'what things happen at home that make you feel anxious?' 'what could we do to make you feel better/safer/happier?' He told me that almost every single day at school he has a panic where he has to tell the teacher that he is going to be sick. He said he feels that way if outdoor play time is cancelled due to rain, if they have to go to the library/assembly/PE, if his teacher is off sick and they have a different teacher, if he has to sit in a new seat or do something new. Basically, he feels rotten if there is any change in plan to what he is expecting. I asked him what makes him feel panicky at home. I couldn't think of any reason myself why he would panic at home. He thought for a while and then said he feels bad if its dinner time and no one has warned him that dinner is being cooked, if he doesn't know what is for dinner in advance, if anyone shouts, argues, or slams a door, if Rosie cries, if he doesn't know what time is bed time, and so on. So I asked him how we could make life easier for him. He suggested that every morning we draw a picture of what will be for dinner and put it on the fridge for him, and that we always tell him half an hour in advance of dinner time so that he is prepared. He suggested that we also show him what is in his lunch box in the morning before going to school. (I notice that on the days his school lunch is a surprise, he doesn't eat it). He asked that I make clock pictures to show the times that different things will happen.

He also said that he can't stand it that everyone lies. "People keep lying to me, I just can't stand it when people lie to me". I asked him who lies to him. "You, Daddy, everyone lies and I don't like it". When I probed into what lies we were telling him it became apparent that they weren't actual lies, but that he often doesn't understand our humour, sarcasm, jokes etc. He takes everything we say at face value (which I've read in this book is typically Asperger). If someone says something daft to him like "I have two heads" he will have to ask if we are joking, and he won't let it go until you tell him that it was a joke.

Our little chat was a bit of a lightbulb moment for him. He didn't want it to end, and seemed relieved and at peace. He asked me to write a letter to all the children in his class saying 'Barney is an Asperger person, so please don't scare him any more'.

Talking of school, I went on the school trip to Cheeky Monkeys yesterday. All in all it went pretty well. Barney was partnered with a girl that he really likes and seems to get on well with. His teacher saved a seat for me near him on the bus, just across the isle from him and his friend. So I was able to chat with him on the way there. He played at Cheeky Monkeys with out any problem at all, which was a relief. It wasn't until it was time to go home that there was any problem. The teacher had told the children where to sit on the way there, and had saved a seat for me. Barney obviously envisaged that everyone would sit in the same places on the way home, but the teacher let them all in willy nilly. I could see through the bus window the horror on his face as he tried to save my seat for me so that I could sit where I was last time, across from him. But some other children took that seat and he was very upset. I got onto the bus and found a seat just behind where I had sat before. But he wasn't happy about it. He started to cry and I didn't know what to do as it was a school trip and I couldn't very well start moving everyone around. The teacher was at the other end of the bus. It made me realise how difficult anything unexpected is for him. In the end the lady sitting next to me swapped seats with him so that he could sit next to me, and he was happy again.

Wow, I only intended to write a short blog post, but I've really waffled on. Today was such a lovely sunny day. I took some photos and video (below) of Barney and Rosie playing out in the sunshine. Lets hope we have a few more sunny days over the summer holidays.

A family of cress heads...

Barney has been taking good care of the cress heads that he's been growing. It's amazing how fast cress grows! The little egg family all have a full head of green hair already. Soon they will need a hair cut. Yummy.

Tomorrow Badger is having his 14th birthday party. He has a load of friends from school coming over. Marty is going to supervise and I am going to go somewhere with Rosie and Barney just to keep out of the way. I'm not sure where we are going yet though. I'm pretty sure both Barney and I won't cope with a house full of teenagers, so we are best off out of the way.

There's only one week of school left for the kids before the summer holidays start. I love the summer holidays. No school runs, no uniforms to wash and iron in time, no waking up at the crack of dawn to get ready for school. And lots of time with my precious babies. I can never understand it when I hear parents complaining that they can't wait for their kids to go back to school.

I've ordered some books about Aspergers/high functioning Autism to read from Amazon but they are taking ages to arrive. One called 'When My Worries Get Too Big' has arrived, but it's a book for Barney to read. We haven't tried it yet, but the idea is that it teaches children how to relax and calm down rather than going into panic. We shall see if it works or not. I like the idea behind it, but wonder whether it will make a jot of difference. When Barney gets an idea into his head it's very hard to change his direction.

Here are a couple of photos from today. Rosie at age 6 months, with that lovely chubby baby look. Aren't chubby babies just delicious? And Barney the explorer about to head off on a mission.

I've been thinking about getting back into the healthy eating and nutrition that I was interested in before our trip away. I still love sprouting, but really want to get back into it. Since I was too busy being pregnant and recovering from the c section, I didn't get to plant or grow any vegetables this year. It's a shame as I really enjoyed growing our own food. But I've been so busy with the baby and other things that my own interests have taken a bit of a back seat. I've been reading a few healthy blogs to inspire myself lately. I really want to get back into the swing of things - sprouting, wheat grass, raw foods, veganism and home bread making. I'm not a vegan, as most of you know, but I really do like the idea behind it and appreciate that we eat far too much meat and dairy in our diets. Anyway, here are a few blogs I've been reading lately that have inspired me....

Making Love In The Kitchen
Eat Air - A Vegan Food Log
Green As A Thistle
Urban Organic Gardener

Cheeky Monkeys

It's a quiet moment in the house. Unusual when there are four kids about the place. Rosie is napping, Tarja is watching TV, and Badger & Barney are making a cafe out in the kitchen. Badger has been great with Barney since we talked about autism with him. Today I found him out in the garden teaching Barney how to play football so that he could mingle with the boys at school better. I was so touched.

Yesterday Barney was invited to 'Cheeky Monkeys', an indoor soft play area in Newry, that I didn't even know existed. He was too frightened to go on his own with his friend and Mum, so I said that I'd go too. He was happy enough with that. But I forgot to tell him that we would be going in his friends car. He was all excited about the trip out until he found out about the car. When Marty mentioned at the last minute that we were getting picked up Barney went into utter panic. He was upset, scared, anxious, worried, angry, desperate. It dawned on me that we are going to have to be much more careful about how we plan things, and inform him of every detail. Had he known we were going in a friends car in advance, he would have been fine with it. It's just that it wasn't what he had pictured in his head. The only way to calm him was to drive there in our own car as expected.

I was a nervous wreck at Cheeky Monkeys. Fortunately it was a quiet time of day and there were only four children there. Barney didn't play with his friend from school, even though they had gone together, preferring to explore the place alone. When it got a bit busier at about 5pm he got more worried and it was time to leave. On Monday his class is going on a school trip to Cheeky Monkeys, and I am going with them as a helper (but mostly just to be with Barney really). I'm not sure how he will cope in that sort of environment with that many other children. I'm a bit nervous about it to be honest. At one point on our visit to Cheeky Monkeys, Barney was in the middle of a spider web type climbing thing when about 8 other bigger children turned up and came screaming through the web. He was utterly terrified. I was stuck at one side of the web, unable to get to him or help him, while he screamed for help and curled up into a ball of panic. All credit to him though, when the big kids moved on he carried on climbing through the web and made it to the top (albeit with a nervous wreck of a mother at the bottom!)

At the end of our play at Cheeky Monkeys, Barneys friend asked if they could go back to his house to play. I immediately said 'not this time', as we were all shattered and Marty was cooking dinner for us at home. Barneys response to this was to cry and scream the entire journey home. He said it just wasn't fair. He wasn't so much upset that I'd said no, but that in his mind there was no logical reason for me to say no. Every reason I came up with for not going was met with a counter reason from him. Then he started shouting at me that I just couldn't understand him. I was surprised at this, coming from a five year old. By the time we got home my nerves were shattered from the stress of driving with a screaming, crying child, and a hungry baby. I had to take myself off to bed for twenty minutes peace and quiet whilst Marty talked Barney down. He came and apologised at the end and was very happy and cuddly again.

Having said all that, I'm feeling much better this week. I've had some energy, enthusiasm and been pain free for four days! So I'm delighted. Hopefully I have recovered from the Hepatitis quicker than expected. I'm feeling more positive about things in general, and more able to cope mentally and physically.

Here are some photos that Barney took and edited himself. Barneys photo art.

High Functioning Autism?

Another week over and time is still flying past at the speed of light. Rosie turned six months old this week. I really can't quite believe it. Where did the time go? How can it be possible? And how can it also be possible that by the end of the month I shall be the mother to a 14 year old!?? I was only 14 myself yesterday, wasn't I? Here is a photo of my first baby and my newest baby together.

After my last blog post about Barney I have been in to the school to speak with his teacher. After discussing my concerns with our GP she decided to refer him to a specialist as she feels that he has some kind of high functioning autism. I had always known that Barney was an individual sort of character, but it has become more obvious that when he is under stress he copes in a very different way to his siblings. Anyway, the doctor said I ought to speak to his teacher and see if she had noticed anything. I honestly expected her to tell me that Barney had settled in fine and was doing just peachy. I was quite taken aback when I went in to speak to her and she had four pages of notes prepared on things she had noticed about Barney over the year. I was both relieved that it wasn't in my imagination, and shocked that she had noticed so much. We talked for about 40 minutes and the more we spoke the more I realised that Marty and I naturally compensate for any of Barney's difficulties, because we know him so well. In the school environment it is harder to do so and he struggles more obviously.

The teacher asked me to accompany the class on a trip to the dentist so that I could observe how Barney interacts and copes socially. At home he is an extremely chatty child, as he obviously feels comfortable around his own family. I was quite shocked on the school trip. In almost 3 hours he did not speak to a soul, nor make eye contact. He kept his head down and seemed to be totally in a world of his own. When it came time to choose partners to walk with he just stood until everyone else had chosen, and then got lumbered with whoever was left. He then refused to hold hands with his partner, and instead made the partner hold onto his coat. Any contact with another child was obviously extremely uncomfortable for him. Apart from that he seemed blissfully unaware of any difference, in his own little world.

The teacher brought out lots of points and said that if there is any change in the days routine he needs one on one attention to cope with it. She wants to make up a routine chart and have it laminated to his desk, with details of what happens each day of the week, so that he knows exactly what is happening when. She has put him on a 'concern list' and wants him to attend some sessions with the educational psychologist when he starts P2. She is keen for him to be seen and assessed for autism/aspergers. The more I have read about it, the more it all makes sense to me, and Marty. I have ordered some books to educate myself a bit more about it all. I know that Barney thinks differently to us, I just don't know how to deal with it.

This last week I've read a lot on the internet in various autism forums and sites, and have noticed that Barney has been a lot calmer just by my change in attitude to him. For instance, quite often his way of dealing with things may seem like disobedience or shyness, and Marty or I might try to force an issue with him that really doesn't make sense to him at all. Then he ends up having a panic attack, trying to throw up, hyperventilating and just generally not coping. Yesterday we were at my sisters house and there were two children there that Barney didn't know. He whispered to me "Mummy could you go past those children and get my toys for me because I can't walk past them". Of course my normal reaction was to say to him "of course you can honey, just go get your things" but when I said it his face came over in panic. Usually I would think it was shyness and try to encourage him to face his fears, resulting in what appears as bad behaviour from him, or panic. This time I said to him "OK honey, I will get that for you", and the look of relief on his face was heart wrenching. He was so grateful that I understood and wasn't forcing the issue. Later the new children asked to play with Barney and his toys. He had brought 33 specially chosen and counted little cars to play with. He looked horrified at the prospect of playing with the children and sharing his precious toys, but he said 'OK' and gave it a shot. But Barney has his own rules and finds it extremely distressing to play with children who can't follow or understand his rules. He gave the boy 12 of his cars and said "you can play with those ones". That was his rule, "you have them and I will have these". And he could cope with that. But the boy kept taking cars out of Barneys pile, and Barney was getting noticeably stressed about it all. Once again I tried to understand it from his point of view. In the past I would have ignorantly forced him to share his cars with the boy, thinking that I was teaching him about sharing and how not to be selfish. Barney was getting so distressed that he was desperately gathering up all his cars and trying to sit on them, in a big pile in the middle of the room, rather than deal with the horror of playing! I asked the other boy if he could play with the 12 cars he'd been given as that would really help Barney relax. The boy agreed and little Barney once again had a look of heart breaking relief on his face. I felt a bit ashamed that I've been forcing him to do things that he just can't handle all these years, without knowing. Barney then relaxed and they all played fine. Eventually he went outside and left the cars with the little boy.

Part of me wished I could explain to the little boys mother that Barney is possibly on the autistic spectrum and thats why he was having a hard time playing. Anyone who doesn't understand that would just see a mother pandering to her child and letting him behave like a spoiled brat, but its not like that at all.

I've noticed since explaining to Badger and Tarja that Barney might have some difficulties, that they have both been a lot more patient and understanding with him. We have had some quite long discussions about what it means to be autistic and why Barney thinks differently to them. Badger would always argue with Barney and frustrate him, work him up into a frenzy. But this week he has been much calmer with him, understanding that he is not just being a difficult child, or a spoiled brat. They both seem to have a real tenderness towards him when hes panicking or shouting that they didn't have before.

I could write for hours about the ways Barney is different to us, and why we sought advise from the doctor. My brain is fried thinking about it all. A lot of people who don't know Barney as well as we do seem to think I'm jumping to conclusions or making a fuss over nothing. But I know my child better than anyone else, and I damn well know what I'm talking about. Off the top of my head, here are a few of the issues (for want of a better word) that he has had lately....

Obsession with time and watching the clock; lack of patience and unable to wait for things; unable to wait his turn; unable to wait to speak when he wants to say something; panic at change of routine; high pitched voice; takes a bowl to bed; lack of eye contact with other children or unknown adults; plays by own rules and can not handle imaginative free play with others; lines up cars in sequences; extremely uncomfortable with body contact with untrusted people; issues with eating (only likes raw cold food, doesn't allow food to touch on a plate); anger and panic if dinner is prepared without him knowing in advance what it is; extreme panic at any change in routine; takes everything that is said literally and will have to clarify whether someone is joking or being sarcastic; gets caught up in what people literally say and can't move on from it; did not walk until age 2; desperate for close friendships but unable to handle other children; prefers to play alone at school than get to know people; sits hunched over his desk and walks hunched at school, sensitivity to sound (panics at noises such as baby crying, cymbals at school, loud music - teacher said he often sits with fingers in his ears), can not understand other peoples point of view no matter how hard you explain it to him; terrified of things like the washing blowing away or the car running out of petrol. I could keep adding to this list for days I think.

Anyway, my point is that I love Barney. He is the most individual, unique, fascinating character that I know. And I don't want to change him. I just want to understand how he feels so that I can make sure I don't do anything, through ignorance, that sends him into panic or makes him feel misunderstood. I can't wait to read the books I've ordered and find ways to really help him grow and learn in his own way. He is a little work of art, and brings joy and sunshine to our lives every day. Everyone who meets him falls in love with him. He's just so lovable!