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.

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.

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.

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!

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.

So many options!

Phew! What a busy day it's been! This evening I spent the evening up at Badger's school talking to various teachers about GCSE options. Apart from his maths teacher, everyone said Badger was doing very well! I was so pleased, and a little surprised. Ok, so to be honest, I didn't speak to the teachers of subjects he is not considering for his options (French, History etc) so maybe they wouldn't have been so positive. But the ones I did speak to were pretty happy.
He could do better in maths, but as I tried to explain to the teacher, he is in a maths class that is too easy for him, and is totally bored. She agreed but won't move him up until he proves himself worthy. Lol.
His science teacher (who I thought was a complete idiot, personally - one of these people who likes to think they know my kids better than I do) said he should get at least a B in GCSE double award science, and that he could definitely manage an A if he knuckles down. I was impressed as I failed terribly in the sciences at school.
His English teacher said that he is extremely creative, very intelligent but not at all academic. Which I already knew. She wants him to take Eng Lit GCSE, which is only offered to a few children, as she thinks he has a natural talent for English. But shes worried about whether he will put the effort into doing it or not. He seems pretty keen when I talk to him about it. I think the fact that the teacher likes him and believes in him has spurred him on.
His drama teacher said he's a fantastic student and was delighted that he's planning on taking drama GCSE. She said the drama GCSE course is always over subscribed and she has to turn students away, but she guaranteed me that Badger would have a place on the course because he has remained dedicated to the subject through-out the years, attending drama club and taking part in school productions.
The ICT teacher said he shows talent in the subject but the ICT course is over subscribed and he may not get a place on it. I told him that if he doesn't get into ICT the only other option for him is child studies, which he is not at all keen on (no boy has ever done that course in his school before!) He put a question mark next to his name saying he was possible for a place. I saw in his list of names that he had one tick, about 6 question marks, and a lot of crosses. So I batted my eyelids at him and told him that he spends a lot of time at home doing ICT type projects. I managed to get him to turn that question mark into a half question mark/half tick. Lol. He's still not guaranteed a place though.
(equivalent of 2 I also spoke to the teachers of business studies, and media BTEC. Both of them are in the same option category. Badger wanted to take both of them but can only pick one, which is unfortunate. So I spoke in depth to both teachers and we have decided that media BTECGCSE's) is more suited towards him. It's completely practical, no written exams at all, and they do things like make movies. They learn how to direct, produce, edit, and how to film. Just his cup of tea I think.
He was very excited to talk to me about it all when I got home.