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.

Another Tarja family video

Tarja is quite enjoying making these video's. If you didn't see the one she made for her baby sister (a few posts down) then make sure to watch it. I bet it makes you shed a tear! This one if for her crazy family, and includes pics of all of us. Nice one Tarja. You're a real sweet heart. xx

Emily Rose

Big sis made a beautiful video for her baby sis. So adorable. It made me cry.

Who is the happiest, luckiest woman in the world?

Me!!

 

It’s that time of year again when mothers all across the country get spoilt rotten and allowed to rest guilt free, for at least a lie in!  But my wonderful family gave me so much more than a lie in today.  I was truly spoilt rotten, by people who love and care for me so deeply.  As I look at these photos of my gorgeous family I think that I must be the luckiest person in the world. 

 

I have a nasty cold at the moment. One of those big, purple puffy eyes, awful type colds that just never lets up.  So I have spent the entire day in bed. Resting, sleeping, eating and enjoying being spoilt.  Barney spent 24 hours organising a party in his bedroom. No matter what the occasion, it is always followed by a party in his room. It’s become almost religion now.  So we crowded into his room where he had plates set out on the floor, with cut fruit and juices.  We played a game of darts and won prizes and booby prizes.  The Barney gave me the presents he had made / bought. A card that he made at school, another that he made at the autism NI kids art club.  Some potpourri, incense oils, a mini iced mothers day cake, and a notebook.  Every mother in the world loves the home made cards that their kids put their hearts and souls into making.

I was awoken this morning by the sound of my 4 kids (and hubbie!) singing ‘we love you Mummy, we do!’  What made it more special was little Rosie who was screaming her own version of ‘we do’ at the end of each verse! So cute!  She didn’t know what was happening but knew it was exciting and was in good spirits for it.  She gave me a shoe box filled with presents. I don’t think I’ve ever had so many presents for Mothers Day. It included a book called ‘The Mums Book – For the Mum who’s best at everything’, a big packet of Minstrels, Rolos, face cream, a book about healthy eating, and a black beaded bracelet. I’m not convinced she picked and paid for it all herself. But she certainly helped me open it all!

Tarja gave me a beautiful gift bag filled with a card, aero chocolate, a tea cup that says ‘If found empty – FILL’ (perfect for me!), and the most gorgeous framed photo of me and her. I was really touched.

Badger had gone to great efforts to hand make me a gift bag and it was actually brilliant.  He made me a little book of tokens with things such as ‘1 cup of tea’ on them.  And he gave me a Boots gift card so that I can go out and treat myself to something.  So as you see I was truly spoilt!  But that’s not all…..

 

After all that excitement I went back to sleep off some of my fluey coldness. But was awoken at lunchtime by the smell of garlic. Mmmmm. Marty had made me mussels in garlic, with spaghetti and garlic bread! I LOVE mussels. And so does Barney, as we discovered whilst he helped me to eat it! Hehehe.  I enjoyed sharing my lunch in bed with him. We made a right mess and there’s garlicy juices all over the duvet now!

I’ve spent the day drifting in and out of sleep. I get up for the odd cuddle with Rosie, or a cup of tea; then when my eyes start running non stop I go back to sleep for a bit. I’ve enjoyed blowing bubbles to Rosie (she can now say Bubble!), and deep conversations with Barney about gravity and the discoveries of Isaac Newton.  All thanks to the book I borrowed from AutismNI about famous people from history who were thought to be autistic.  Barney carried out some gravity experiments which involved jumping off of the bed.  We discussed what gravity might be like on other planets and had a laugh pretending to walk with less and more gravity. 

Not a single day goes by when I don’t sit at some point and think about how lucky and how happy I am.  Sure life with four kids (especially with Barneys current difficulties) can be hard work. But that work is totally worth every second of it. The rewards are endless. Each little first as babies; each achievement as they grow; the smiles; the sound of laughter; the feelings of pride as they overcome things; watching older siblings protect the younger; the giggles as they play together; the conversations; watching them sleep; watching them grow into the kindest, most thoughtful, caring, young adults; seeing them learn from past mistakes; the cuddles, kisses and oodles of love. There is beauty in every moment, happiness everywhere.   There is no place I’d rather be, nothing I would rather do that be the Mama of this happy little family. 

Thank you, each of you – my precious family for taking care of each other, taking care of me, for understanding that I am only human and have failings; but for loving me anyway. I love each of you more than words can ever express. xx

Shouldn’t you just leave?

It looks like the sickness is over. For now at least. Poor Barney had an extra night of sickness that we hadn’t expected which resulted in him taking Friday, Monday and Tuesday off of school. He was due to go back in on Wednesday but he woke up in panic and spent almost 2 hours crying, groaning and repeating that he was scared. By the time 9am came I knew that if I took him to school in that state the staff would have just sent him home again, so we didn’t bother.  I got him to help me with the housework instead.

Wednesday afternoon saw our long awaited meeting with the SENCO and Barneys teacher.  Marty came along too, even though it meant bring the littluns, because we felt it was important for him to be involved and not just hear everything through me. It didn’t start well as the teachers had arranged for Barney to go into another class with his old P1 teacher whilst we had the meeting. This was unexpected for him and they should have realised he’d need to know about it in advance – after all that is common sense when dealing with autistic children. So he panicked and cried and I told them they didn’t have a hope and that he’d be staying in the room with us.  So he found the play corner of the room and played with Rosie whilst we chatted. After half an hour he came over and said he was ready to go to the P1 class with Miss Q. So off he went and had a blast with his teacher from last year. All that one on one attention that he totally loves. It just proved my point that he can do anything if he is given time to make the decision for himself, rather than being forced.

Anyway, the meeting was long and not all that much was achieved really. Mrs M was on her best behaviour, I presume because Marty was there.  Or perhaps she is just better when there isn’t an ‘incident’ going on around her.  Both teachers said that in 20 years plus of teaching they’d never encountered a child with Barneys level of anxiety, even though many autistic children had been through the school; and that they actually didn’t have a clue what they were doing. Both agreed that in their ignorance they had done things that had made the situation worse; such as the time he was forced into the classroom against his will and held captive whilst screaming, crying and throwing himself at the door.  I told them under no uncertain terms that that was NEVER to happen again. And they agreed.

I am pleased that they have realised that they don’ know what they are doing. But also annoyed that they don’t know what they are doing. If that makes sense.  The whole situation seems to be left up to me to deal with; with their support and understanding. 

The Senco has an emergency appointment with the Educational Psychologist on Tuesday. He is coming out to the school to speak to her about Barney and to offer advise. But he won’t be seeing Barney himself as he has to sit on a waiting list and wait for that.

It was agreed that I was to continue bringing him into school later than the other children. That I would be left to my own devices to calm him and get him into the classroom, and that there would be no interference from anyone else. This is not because I want to be in control or anything, but because it has been agreed by all concerned that it is in Barneys best interests to remain in a calm environment with just one person. And since the teachers do not have the time to deal with him one on one, it remains my job to do so. 

We all knew that this morning would be difficult. Any time that there has been unexpected time off school (sick days, snow days, public holidays, half term etc) Barney has had a very difficult time getting into class the following day. So we were bracing ourselves, and his teachers knew it might be a long morning.

Now, the Principal had spoken to his teacher, the Senco and the classroom assistant and made them all aware that she was supporting our morning routine and that she had given me permission to sit in the classroom for as long as necessary with Barney, even if I was there the entire day. She had stressed to them all to keep well away, not interfere and above all not to try to take Barney away from me. She and I both knew that would result in the extreme panic we experienced in the cloak room, and that we’d be right back to square one.

However, this morning (because we had been taking over an hour to get into class) two teachers (one of whom has never taught Barney and knows nothing about him; and one who has been present for some discussions and should know better) decided that despite all our meetings, all our plans and chats, all our deepest efforts and discussions about Barney; that they knew better!  Mrs T (the lady who should know better) and Mrs W decided to intervene, with no idea whatsoever about what they were dealing with.  Mrs T made herself into a human barrier between Barney and I and started walking towards him, covering over him, so that he had to keep stepping backwards towards his classroom. And when he started screaming in terror - ‘Mummy! Mummy! Mummy!’ she kept trying to block his view by dodging in front of him! Then Mrs W said to me “Mrs M******, don’t you think it would be better if you just left?”  I just looked her in the eye and said NO.  I didn’t offer her explanations, or go into details about how I had permission from the principal, because it was neither the time nor place and Barney needed my assistance.  Well, the looks those two teachers gave each other said it all!

I insisted on taking Barney back to staff room where, thanks to them, I had to start the whole process of calming him down again. Back to square one.

Now this is the tactic I am using…. I take him to the staff room. He tells me his worries, and I tell him that I understand and I go through the days schedule and remind him that I will be there to pick him up at 2pm. We spend a little time breathing and relaxing.  Then I sit with my cup of tea and tell him that he must tell me when he is ready to go in.  I don’t engage in chit chat, I don’t try to convince him, I remain calm and I wait.  After about 10 minutes he usually says ‘ok, I am ready to try to go in now’ and we make our way to the doors next to his classroom. Sometimes he chickens out at this stage and we start again. But eventually, although tearfully, he goes into his classroom. This method requires patience, and time.  But it works. Now what happens when they try to force him in quickly?  He goes into panic, meltdown, hysterics, is traumatised and has to be taken home. So which method works quickest in the end?

I must point out that the hysterics and meltdowns are not anything like those of a spoilt brat who is being pandered too. A concept which the principal understands, but which some other teachers do not.

Today when I got home I phoned the school and asked for the Principal to phone me back when it was convenient for her.  Later in the day she phoned me, and before I even told her why I wanted to speak to her she started to apologise for the teachers behaviour this morning. Well she wasn’t there when it happened so I can only presume that those teachers had gone to her to complain about me and Barney taking so long out in the corridor (which I must point out is in a quiet, private area, not in any way disrupting the other children).  She said that she had been extremely cross with them for poking their noses in and had told them to mind their own business in future. She said to them that I have her expressed permission to use the corridor and staff room and that I can stay there until school closes if needs be. She told them that this was not the case of a spoilt child and that there were much deeper emotional issues that no one could fully understand.  When I told her my side of the story about Mrs T using herself as a barrier and Mrs W asking me to just leave she sounded horrified and was truly apologetic. She said that she was going to call a staff meeting and give them all a good telling off and that I shouldn’t have any further trouble. 

She totally understood that this problem will take time and patience; that the ways to deal with most children do not work for Barney and do in fact make the problem worse.  I can’t tell you how relieved I was to have her on side and not to have to fight with her for understanding.  At least I can now do what I need to do with confidence and mentally stick my fingers up at those ignorant teachers and their condescending looks and remarks.

Family snippets

It’s been a rollercoaster couple of weeks.  That seems to be becoming the norm though.  Rosie had a horrible tummy bug that had her vomiting for 24 hours straight. She was very unwell, and then didn’t eat for several days.  Now Barney  has caught it and he has spent all day today looking drained, drifting in and out of sleep on the sofa, and chucking up.  I feel sorry for the little ones when they are so ill.  But its also very hard as a Mum, especially at night time when instead of sleeping you spend the whole night with a bowl and tissues in hand, mopping up puke!

In between sick days we’ve had some nice times.  We took Rosie and Barney swimming at the big crazy pool place in Lisburn. It was Rosie’s first ever swim.  She absolutely loves her bath times so we had an inkling that she’d enjoy swimming.  Barney just couldn’t wait to take her for her first swim. From the changing rooms she kept pointing at the pool with excitement. But when I took her to the baby pool with the big pirate ship she clung on to me for dear life. So many people, and so much noise. Poor wee thing was terrified. But within 5 minutes she was splashing and squealing with delight.  All four of us had the best time. We really should get out more often.  I know Marty really enjoyed seeing his littluns having so much fun.

Barney had to dress as a character from a book for world book day at school. He chose to go as Charlie Bucket, which was pretty simple.  We tore up an old shirt to make him look really poor, gave him a cap and scarf, and then made a golden ticket which we stuck to the front of his shirt. Here he is acting as Charlie Bucket, excited on discovery of his golden ticket :)

Marty took the littluns out to Scarva park for a bit of sunshine. And yesterday we took a trip to Gosford Forest Park, where we had a picnic, a walk along the river, and a peek at the sheep and geese.  The big kids aren’t so interested in these days out any more, and are usually too busy with their own social lives to grace us with their presence! But Rosie just loves being out and about, and Barney just loves to see his sister having fun.

Animal School

This little video moved me to tears and really made me think. Please watch it.