Positives

I don't get as much time as I'd like to update this blog these days. Mostly due to tiredness and time restraints. However, I wanted to write a very short post to say that Barney has been doing much, much better coming off his meds than it originally appeared. A few posts below this one you can read about my concerns about him coming off the anxiety meds, but I have to say that it only lasted a few days and since then he has been doing remarkably well. He does have his wee moments of mild anxiety, but considering the stress we have all been through with other life events this last few weeks, he is doing amazingly well. I am so proud of him, and also so relieved.

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.

Life is so hectic that I only get to blog if I stay up really late, way after everyone else is sleeping. But usually I am too tired to do that.

So here's a catch up blog post. Although I have so much to blog about that I can't possibly fit it all into one blog post!

So, spring has sprung and Rosie is loving the outdoors! All she wants to do is play outside in the garden. She can't comprehend that it is sometimes raining or too cold to go out. So she sits at the back door, banging at it and screaming. If someone does take her outside her little face lights up in delight. Fortunately for Rosie she has three big siblings who all adore her enough to take her out. Between the lot of us we bounce her on the huge trampoline, push her in Barneys old baby swing, take her for rides up the street in Barneys old push-along car, or play with her in the sandpit. Because she can't walk yet she actually grazes her little knees - through her trousers - from crawling across the patio. But she doesn't care because she just loves being outside.

She has had a bit of a dodgy hair cut - as you can see! Her fringe was always in her eyes, no matter how often we clipped it out of the way. So a cut was in order. But it is very hard to cut a wriggling baby's hair when they just won't sit still! It will look better when it grows a bit. Hehehe. At least she can see again!

Barney has been having a pretty good time of it lately - in comparison to how things have been. The medication is really working now and he doesn't get anywhere near as anxious as he had been. I keep reminding myself that the medicine is only a temporary measure, just to give him (and us) a break from the trauma. The last week he went into school without any tears at all. We are still doing the same routine of going in late, me staying with him in the staff room until he is calm enough etc. It is still taking him quite a while to get into class, but he goes when he is ready and he doesn't cry any more. Which is a hugely positive step in the right direction! I am so proud of him. But in the back of my mind I'm always dreading the inevitability of him coming off of the medication.

I am reading a book called 'Homeschooling The Child With Asperger Syndrome' at the moment. Marty and I have had a lot of discussions about it and we haven't yet come to any final decisions. I tried a little homeschooling weekend with Barney, without his knowledge. I basically let him learn about whatever he wanted to for the day, and he had the best time ever. He watched the new 'Wonders of the Solar System' BBC documentary, which is aimed at adults and not easy to understand. However he was transfixed by it! He went into school and told the entire class all about the planet Saturn; that its rings are made of ice, that it has its own moons etc. Then he spent an hour on youtube watching various movies about space. In the photo above he is watching a NASA documentary about the astronauts working on the space station. He decided that he needed a noticeboard in his bedroom because "I now study space Mummy and I need a notice board to put all my work on". We used some of his DLA money to buy a notice board and he's gotten busy filling it up with various space projects.

On Monday he had his first visit from F, the NHS Autism support lady (I totally have no idea what her official title is!) She spent almost two hours with him in our living room. He spent the entire two hours showing off. (As anyone who knows him can well imagine!!) She brought him a worry box, and a school/home schedule to follow each day. The idea of the worry box is that every time he has a worry, instead of coming to me in tears and panic he writes his worry down and posts it into the box. Then at the end of the day I empty the box, pick 5 worries to discuss and we set a timer to 10 minutes whilst we go over his worries. In theory it's a good idea; and it has worked for some of his smaller worries. But he has been hesitant to fill it with his darker concerns. The things that really tear him up when he's not on the medication. A few times he had come to me the way he does, panicking about death, or murder or whatever - but when I've reminded him to put it in his worry box he says no. On probing the matter it became obvious what the problem was. He doesn't want to have to be reminded of the sad worry later in the day. He said to me 'but if I put my worry about you dying into the box then we will have to talk about it again later and I will get all upset again'.

Barney and Marty as supposed to be going to England next week to visit family. Well, the idea of the trip isn't so much about visiting anyone. It's more to do with Barney having a practice run on a plane, and having some time with his Daddy. But whether on not he will get on the plane is anyone's guess! The tickets were dirt cheap, so it's no big loss if they can't go. Today I made him a book about the trip, as advised by every autism-person that I meet. He still keeps telling me that he might not be able to handle it. I hope he does as they would both have a great time together. Tarja is going away with her friend at the same time, so it will be only me and my first and last born at home. Here are a couple of pages from his book.

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.

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.

Mid day blackouts

I keep noticing, as I go about my daily business, that the house has been plunged into darkness. Someone has been closing all the curtains at odd times of the day. Today I spotted what was happening. As I walked out of the office into the hallway, every doorway was closed, every curtain in the house was closed, and the place was in darkness. I could hear Barney closing the last of the curtains upstairs.

When I asked him why he was closing them, he said that it was because it was raining. And I realised that every time it has rained the last few days, he has done the same thing. Why do you need to close them when it rains? I asked. He gave me a few silly answers and then said 'it's because I am worried the world is going to flood, and if I don't' see it, I don't feel so worried.' I'm wondering if that's all part of the Aspergers issues, or whether he is just being a kid and playing games.

Today was supposed to be such a busy day. I had 3 different events planned for today, but one by one they have all been cancelled. I am not complaining, as it means that I now have the house to myself for the day! Which is a rarity that I truly enjoy.

We were planning to go to W5 today with a friend. But the friend was unwell, and as it turns out I have a cold so I am quite relieved not to be going. Marty has gone instead, with the kids. Barney was fine about the trip being cancelled. Then when Marty said he would take him instead, he was excited. But excitement often leads to anxiety attacks. After getting dressed and ready to go Barney started to feel sick and panicky and decided that he couldn't go after all. For some reason the wind outside seemed to be bothering him too. He begged not to go. I wrote him a page out about the days events, and we drew pictures of all the exciting things he likes at W5. But still he did not want to go.

Anyway, my sister M turned up with her new doggie which we are baby sitting for the weekend. Barney loves Mookie, but is a little nervous about her. Once she arrived he decided a trip to W5 was the better of two evils, and off they went! I hope they have a good time and he doesn't spend the whole day panicking.

I phoned the doctors this morning for the results of my latest liver function tests. She said that my liver function is improving (good news!) but isn't yet back to normal. I'm a little surprised as I have been feeling so well the last 2 weeks. I have to be tested every two months now instead of every two weeks, so I guess that's a good sign. If it's not back to normal next time then they are sending me for liver scan.

Rosie has started to sit up on her own now. She has been doing it for a few weeks but was a bit wobbly. Now she seems to be quite happy to sit unaided. She looks so grown up when she does. She is such a poser! As soon as she sees a camera she gives a great big smile!

Look at these two photos of me and Rosie at the same age. Don't you think there's quite a resemblance??
















I have been taking steps to make life a bit easier for Barney (and myself). I've been reading various books and sites about Aspergers and Autism, and tried to implement a few new things to see how they help. I have printed out and laminated a morning and evening routine for him. It basically lists all the things he needs to do, such as brush his teeth, make his bed etc, and he ticks them off when he is done. He likes having them to follow, and it means I don't have to keep asking him if he's done everything. But the best thing so far has been the little food planner that is on the fridge. I laminated some little food pictures to represent each of the following; breakfast, lunch, dinner, pudding, 1 unhealthy snack, 1 healthy snack, 1 fruit snack. Barney puts magnets onto each one and pins them to the fridge every morning. Each time he has used one of them he puts them into a little pouch and they are gone for the day. It is working really well. On a normal day Barney can ask for food every 10 minutes or so. It is a constant battle of reminding him what he has already eaten, and putting up with the tantrums that follow a 'no you can't have something bad for you'. Now, he looks at his pictures to see what options he has. Once the option has gone to the pouch he doesn't ask for it any more. It is wonderful!

I have also printed out lots of clocks for him. When something planned is happening during the day we draw the hands onto the printed clock so that he knows what time the event will take place at. It seems to give him some peace of mind.

Do you like my green ear muffins?

I have to start this blog post off with this gorgeous pic of our Rosie wearing her Daddy's American bandanna. He wore it all around the states on our trip, and now it seems she is following in his fashions. Cute.

Well, it's be an adventuresome week at our place. Barney's ear defenders arrived in the post and he was delighted with them. He has worn them a lot and they seem to give him some comfort even when noises aren't a problem. For instance, he dropped a big glass bowl on his little toe which was cut open and badly bruised. He was in agony, poor lad. He was so nervous about me putting a plaster on it in case it hurt when I touched it, so he put on his ear defenders (or ear muffins as he calls them!) and closed his eyes whilst I fixed his toe up.

Once he was used to wearing them he decided to brave the cinema to watch Ice Age 3. Daddy took him. The last time we took him to the cinema he spent almost the entire film in the toilet in a right state. This time he adorned his trendy ear muffins and bought a ticket. The second the ticket was bought he started to panic. Marty bought him some pick'n'mix to tempt him further into the building. They got past the tills up to the cinema foyer and he started to panic and begged to go home. Marty spoke to one of the staff and asked if he could go into the cinema and check the place out before deciding whether to stay or not. Anyway, to cut a long story short, they made it into the cinema and Barney sat with his 'muffins' on, on the edge of his seat for a good half an hour before relaxing into the film. He did it in the end, but it wasn't without a lot of stress and upset.

Speaking of the ear muffins, here is a photo of Barney wearing them at the Ulster Transport Museum. He loves to go there. We used to go every week or so before we started our travels. But we haven't been since almost a year ago when we took Neil there. Emily was only a bump then. So he was very excited about going there for the day again, and even more excited that our friend Jools would be joining us.

So Barney, Jools, Rosie and I all had a fab, exhausting day at the 'train museum'. He barely needed the ear muffins as it was pretty quiet there. Poor Jools was shattered after Barney had her racing through trees, up and down hills. Jools was absolutely fabulous with Barney and he made a friend for life. He told her 'you're my new best friend' and he didn't leave her side the entire day. Later that night he asked me "is Jools my friend now or is she still your friend?" Bless. He has made Jools promise to come to the Aquarium or W5 with us while she is off work. It is so great for Barney when someone takes a real interest in him and doesn't get fed up or annoyed at his constant chatter.

The summer holidays are well underway here and are already proving to be a very stressful time! Having four kids around 24 hours a day without a break gets tough at times, although I still insist that I love the summer holidays. Still, a teenager, preteen, a 5 year old and a baby make for a lot of hard work. And a lot of good times, laughs and precious memories.

I've been quite surprised by the reactions we have had to Barneys possible Asperger diagnosis. I'm not sure whether some people see it as an undesirable way to be, or whether they think that Aspergers doesn't even exist, but it is interesting and sometimes upsetting to see how people respond to Barney and Aspergers. Some people quite obviously think it is just a label we have chosen to endorse on our son to mask his bad behavior. Others seem to be conveying (from their sly, condescending looks, that he must need a good smack or some hard disciplining. When Barney announces 'I am wearing these ear muffins because I have Aspergers and I don't like loud noises' some people have tried to convince him that there is in fact nothing "wrong with him" and perhaps he will outgrow it or is just nervous/shy/anxious or whatever.

It makes me quite cross when often these people don't see Barney's severe panic attacks. They don't live with him 24 hours a day, and some barely know him, yet they feel free to pass judgement and tell me (or him!) that its probably nothing. Most of these people have absolutely no idea what Aspgers or an ASD is, yet they feel they know enough to tell me that I shouldn't worry too much about it. This 'Aspergers idea' is not something that Marty and I have pulled out of no-where. It has come from over 5 years of knowing and loving our son, long in depth talks with teachers, and Occupational Therapists, and consultation with our GP, not to mention the reading of countless books on the subject over many years - not just recently. No he doesn't yet have a piece of paper that says 'this child officially has Aspergers', but there is no doubt about it. The truth is that if you know Barney and you think theres nothing amiss, then that is more than likely because we take jolly good care of him and have always tended to his special needs and issues without having had a label of Aspergers. Many family members have commented over the years that 'Barney is a difficult child', or 'Barney is hard work isn't he?' We do many things to make his life easier, and ours, that we have been doing since he was two years old.

I have noticed that some family and friends have been compassionate to Barney recently and have taken the time to try to understand how he thinks. I can't thank these people enough, as their thoughtfulness and kindness, patience and tolerance has made a huge difference. At the moment every day has huge difficulties and to be honest some days are just extremely tough. When people take Barney aside and spend time with him, comfort him, or just listen and try to understand, it makes every ones life a hell of a lot easier, and happier.

Speaking of which, last night we had a family meal at my Mum's house. Mum always puts on a good spread and the company is great. But with seven children, a crying baby and two dogs running about the place it was a noisy event with lots of hustle and bustle. Several of the adults had trouble coping with the noise and excitement. So imagine how much harder it must be for a 5 year old boy who is extremely sensitive to noises and strange or new situations. Barney spent the entire day building up to our trip to Nanny's feeling sick, worried, anxious. He didn't want to go. It was too much for him. But we went, and he had a lot of fun with his cousins. However, late at night after all that noise, food and excitement both he and Rosie got overtired and wrung out. By 8pm Rosie was desperately tired and needed to get home to bed. She was crying, and Barney was panicking. In order to leave I had to chase him, panic stricken, around Mum's kitchen, begging him to put his shoes on. After we finally left I spent another few minutes chasing him around the garden trying to get him into the car. He wouldn't get in because Rosie was crying, and even with the ear muffins on he couldn't bare to be trapped in a moving vehicle with a crying baby. I almost had to restrain him and shove him into the car against hill will. It is very upsetting for a mother to have to do such things to a panic stricken child. It is not easy. And it is not a case of a spoilt brat needing a good slap either!

Well, rant over. I guess I'm just starting to see some peoples prejudices against Autism. I guess there will always be people who feel it is ok to laugh at a child and mother who are in distress and just trying to do their best. Or to make uneducated, naive comments to us both without any idea of what they are talking about. Thank goodness that there are some wonderful people who truly care and understand and at least try to help. Thank you to those people. You really do make a difference.

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.

I really should be in bed. It's almost midnight. Why do I refuse to go to bed when I know that the kids will be up at the crack of dawn, and at least one child will probably be up during the night? I guess it is because it is 'grown up time' and I don't want it to stop!

I harvested a big glut of blackcurrants and raspberries from our garden today. The vegetable garden that I cherished and tended to before we went to America is a big patch of weeds now, save for some lavender and an overgrowth of mint. But we do still have raspberries, blackcurrants and redcurrants growing in abundance out there. The only problem is, that to pick them one has to trample through 4ft high weeds. It happened to be raining when I had a spare half hour to go outside, so I stood in the pouring rain with Barney, harvesting our fruits, so that I could use some of them to make baby food for Rosie. Marty is going to make a fruit crumble with the rest. Yum. I think I am allergic to weeds! When ever I do the weeding I come out in rashes. Today, since I was wearing shorts, I came in with itchy rashes all up my legs.

I spent another hour in the garden planting some marigolds, lavender and some other type of flowers (can't remember the name though) into pots. They are all out in the front garden now, and at last our house looks semi respectable...... I often wonder if the neighbours get fed up with us! They are all well off working professionals who take great pride in their gardens. Ours usually needs mowing, and weeding, and has a scatter of kids toys all over it. We certainly look like the chavs in the street. I forgive myself though, as I know that we are the only house in this cul de sac with four kids to take care of.

Barney has been enjoying the start of the summer holidays. I am still reading books on Aspergers and still pondering over it all. He hasn't had too many panic attacks this week. He has grown out of his junior bed and really needs a proper single bed, but we just cant afford one at the moment. Anyway his mattress got wet and I put it out to dry, then it rained on it and so he couldn't sleep in his bed! So we dragged the futon mattress up to his room and made a bed up on the floor. He has slept on it for two nights, but he hasn't settled easily. He has started back to feeling ill and panicky at bed time. His tummy hurts and he thinks he is going to be sick. He doesn't have any clue why it's happening, but I know its just because he isn't sleeping in his normal bed, and his body doesn't like changes.

He is still having the most awful panic attacks whenever Rosie cries. Last night she awoke at 2am wanting a feed. She was crying in the bed with me and before I could get my eyes open properly Barney had burst into the room in a total panic. He was shaking, hyperventilating, screaming, then ran out of the room and down the stairs into the hallway where he ran up and down in a panic, not knowing where to go, but wanting to run away. Marty went to calm him down whilst I fed Rosie. Its very upsetting to see. Loud noises really upset him and he has absolutely no control over his reactions at the moment.

The bigger kids school reports came in the post yesterday. Tarja got almost straight A's, a glowing report. She did particularly well in English and Art. Her French teacher said that she is a natural linguist, to which Tarja was very surprised! Badger's report was also good. He attains good results, but almost every single teacher commented that he could do extraordinarily well if he concentrated and got himself more organised. I'm quite impressed that he can do so well without concentrating! Think what he could do if he really knuckled down!