MOSEY

Bestaluck, Scoops!!!

Oh dear - its such a nightmare applying for DLA! I was totally stressed doing the form and felt so guilty about the negative focus on my boy. I am waiting to hear whether he qualifies again and have read your post with interest!

If I were you Allsetuk I'd go straight back to Social Services and tell them just how hopeless you are feeling. You could ask them directly whether or not you would qualify for shared care/respite support. We have just been approved as shared carers and will be taking a little boy for outings soon at weekends when my hubby is home. I'm much better and quite happy managing the kids when both of us are there as we can take turns coping. It's just so hard when its only you. I feel for you!! There are people out there who want to help out through the Children with Disabilities team at Social Work. I'm not sure how you access it but I could ask my shared care social worker for you if you would like?

Just to say, Mel - one of the reasons we bought our first dog was that my sons had an irrational fear of dogs and were jittery around them. They now snuggle up on the sofa with their heads against the dog, love walking them and spend hours playing with them. My eldest DS used to spend hours stroking my head because he liked the sensation of it - drove me mad! I'm delighted to say I've been replaced by a labrador!! If your son really has an aversion to them, getting one could be just the way to help him overcome this.

What a shame allsetuk. It can be so hard sometimes. Is anyone in your family able to help? Sounds like you could really be doing with a couple of hours to yourself. Could he start a Pokemon project, maybe writing a book about all the characters and their skills or making cardboard models of them all? When my DS is really jumpy, a project helps and he responds best when its on his current fave topic. I think it's so much harder to cope when you can't just let someone else take over and let you calm a bit. Wish I could offer you more advice, but sending you my best wishes and good luck at work.

Oh yeah - card games. Scabby Queen (Scottish name - bet there's a more polite name for it!). The kids love it!

We've been doing lots of big doggy walks in nice places and taking picnics for us and a treat for our lwo labradors. The kids love to throw sticks in the water and watch the dogs fetch them back then shake like all the water off like mad things! Next week, we are packing paints and engraving boards (from Hobbycraft website sale - very cheap arty treats) and staying at our wee caravan for a couple of arty days. I do my own paintings at the table and the kids sit and join in with their projects. If anyone is off to the cinema, I'd strongly recommend Ice Age 3. I was laughing louder than the kids - genius!!

These are really moving - from the heart. Your nan must have been very special. Hope your niece enjoys hearing hers!!

They are brilliant! Creativity is such a fantastic way of expressing feelings and you've captured them so well - my heart was aching on your behalf reading those. When I was 17, my mum dropped dead very suddenly and I was left alone with a brother of 11. I couldn't talk about it and I felt like no-one understood the pain, but I painted and it helped me sooooo much. I think you have a talent there.

Thanks BillyX

BillyX thank you - that was a really helpful post. Particularly the bit about managing the tantrums. I will try this next time (which might be in about 5 minutes heehee as we need to take him out and he doesn't want to go!). You are so right about staying calm - and that's the bit that's hardest for me, especially when I'm tired. It's so easy to get cross and it always makes things worse. Thanks for sharing your thoughts about the music - it's very helpful for me to imagine it from DS's point of view. Last night my OH was playing his music for ages and it was really getting to me after a while. Made me realise how Sam had felt, just in a much more intense way! I hope I haven't painted too negative a picture of my boy - he really is a gorgeous kid and he would never wilfully upset anyone. He can't help how he feels a lot of the time, but I wouldn't swap him - he's my wee star!

Thanks BillyX! I do take Sam through new situations in great depth - I have also spent hours with him making and illustrating a book full of social stories which reflect situations specific to him to help him understand what has gone on. The extreme reactions which have been causing the stress are not due to new situations, they are caused when he doesn't get to do what he wants or someone does something he does not want them to do. I appreciate that this might be upsetting for him, but I also think he really needs to learn that not everything will be his choice all the time and that other people can listen to music or make a decision without him having a complete screaming match and making personal comments. I'm scared that if he doesn't get help managing this, he will compromise his chances of having positive give an take relationships in the future. That's why I always spend a long time talking to him afterwards or doing a social story approach with him. He always understands after the event, but it doesn't make his behaviour any easier to deal with at the time and if there are other children with him, it's not always possible to ignore it.

You might be pleasantly surprise Brooke. We were worried sick as DS had big changes last year with support staff and transport and during the Summer was convinced everything would go wrong when he got back. Quite the opposite - his new supports worked really well for him and he ended up blossoming and becoming more independent as a result. I guess it's always prudent to prepare for the worst, then you have every possibility of being pleasantly surprised!! And thank you so much for your kind words.

There are several books on this topic - you could check out Jessica Kingsley Press website. My son is younger, so the info we read is probably too immature for her as he was disgnosed some years ago. We told my son a little bit about Asperger's syndrome and its typically associated traits and he very quickly identified with it and asked if he had it. To him (and us), it was a huge relief - he felt like a lot of his past suddenly made more sense to him. He loves to read about successful people with Aspergers and likes to focus on the positive traits. There's lots of info on the web about this. Of course, this doesn't help much on the bad days and he knows his condition causes him a great deal of stress, but in the main, hearing about AS has helped him to become more self aware and deal with his life more effectively. He now knows why he experiences some ofthe extremes he feels. Best of luck with your daughter - hope someone else has better advice for her age!

Mibbe all of that together is just too much. Its hard enough coming off anti depressants without a big bereavement on top. I'd deffo go back to the GP and explain how you are feeling. Hope today is going well!

Hullo and welcome! My two boys have a very love/hate relationship. I get your drift! Nice to meet ya!

We have his DVD. He's funny in a very droll way! Musically fabulous, I thought!

My son spoke with a Liverpuddlian accent for years! (We are Scottish!). We reckon it was Thomas the Tank's fault. Loved your blog and think you have a really lovely singing voice. Is it your hobby or have you had lessons?

Hey Smiley1590. So sorry to hear you are feeling his way. Sounds a lot like anxiety attacks which you can get medication and relaxation therapies to help you with. Please please please go to your GP. They can give you medicine which will really, really help you. All of this could so easily be linked to your bereavement. Losing your nan is a big loss and its ok to feel sad and think of her every night. You shouldn't feel ashamed of that - tears of love are beautiful. Some people never have the privilege of feeling that way about anyone. Exercise is also a brilliant stress release. Do you have a dog? If so - walk it as far as you can! If not, just get out and have a big walk in the sunshine. You are obviously very caring towards others - it was clear in your post about my son. So why not let someone else care for you for a bit? Why not talk to your parents or someone close - they are probably worrying about you anyway and would love to get the chance to help. I do hope you start to feel a little peace in your heart soon - take care. Hugs x

Hi Scoops! Nice to meet ya! Hope your day has improved

Brooke - thanks. I think you are so right - the Summer Hols do upset things every year. It's a big routine change and this year, DS goes on to high school which is on his mind. I need to work on my patience!!!!

Thank you so much for replying to my post. I really appreciate it. Sam does know he has anger issues and he knows it's his AS. he's only eleven, but when he was about 8, he exploded with a girl on the school bus and really hurt her. He was so upset afterwards and gets a taxi to school now because of this incident which has also helped many of the other issues he had on the bus. Anyway, after that he self harmed a bit which was so upsetting for all of us and he attended a clinic and saw a therapist. We also went to classes to help us in supporting him with his AS. If he needs, they said he could go back and try the SNAP programme, which is anger management work. He hates feeling 'different' and is always trying to avoid seeing 'services'! I know he can't help losing it - I just feel inadequate when I can't calm him down and I don't want him to hate himself (or me) because of it. He can be really hard on himself afterwards but also, I have to be firm with him to help him manage his reactions. So it's a fine balancing act between talking about these issues and also not upsetting his self esteem. And he has loads to be proud of - he's a fab wee guy! I think when you are a mum you just worry that if you don't get it right, your kid might not be a happy grown up - that worries me more than anything else. It's so kind of people to share their experiences about this. I feel much much better for posting. Thank you!!!

All signed up. Fab idea Willow tree!

Thanks Willow-Tree - your reply is so sensible. This response from DS starts when something he doesn't like has to happen which might, perhaps, interrupt something he'd rather be doing. We do spend time talking when he (and I )are calm and he is a smart cookie, who is able to understand what has happened. It's just really frustrating in the throws of his upset. I can see him getting angrier and angrier and to be honest, I try to stop him getting worse because he always ends up saying things he regrets later and we than have to 'ground' him or give him into trouble because we can't let him behave that way in front of his brother. I think I'm just feeling a bit helpless just now because my OH is working away so it's just the three of us at home all week. I've always been the one who has made everything seem better and been a comfort to him, but just now, he seems to see me as a source of anxiety as I am the one placing the boundaries and making the decisions about what we are all up to. I get cross with myself as I should know he doesn't mean it and I shouldn't get mad, but it's so upsetting both to see him in such a state and also some of the things he says. It was really good of you to reply - thanks! Hope my DS is as grounded as you are when he is 17!!

Poor you - being sick is just horrid and rotten to be given duff advice from someone who should be a support to you. Hope you feel better soon!