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| Daniel's Diary |
I set Daniel a reading comprehension his morning as one of his pieces of schoolwork for today, but instead he pulled out his diary and spontaneously wrote this. I have asked his permission to share it here because it may just help another person who has a sibling on the autistic spectrum to know that they are not alone.
Here's what he wrote:
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6th November Tuesday. 2012
Tomorrow I'm gonna leave. This may sound weird but I HATE MY FAMILY! It all started March twelth on my birthday. My bro was nice. In fact my family was nice. But when I was three, IT started!
It was my bro. He hurt me. So everyday it happened. I run to my room and cry. Once I almost ran away but I got caught. So tomorrow I'll run away at 6 O'clock in the morning.
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It is absolutely heartbreaking to read this. I have had a chat with Daniel and I do realise what he has to put up with. He has to be so understanding, patient and tolerant and I am so grateful to him that he is. I try to tell him that regularly. I wish there was someone who could help Josh more. In our area we have been waiting a year and a half now for a CAMHS appointment (and I doubt there is anything much they can do anyway), I have begged for more OT sessions as that is the one thing that we know does help but any sessions that the NHS can offer are few and far between (possible next session would be next Easter when ideally he needs weekly therapist input not just once or twice a year), we do not qualify for ANY respite help, we had to fight for a year and a half for a statement of Special Educational Needs and even with the statement they cannot offer Joshua any education without having to be sent miles away each day which I am not prepared to do. This is my child, not just a number on the system!
But I want Daniel to know...YOU ARE LOVED! YOU ARE PRECIOUS! Even Joshua adores you but he just doesn't always know how to show it. Please bear with us. We will keep working together to help Josh have more good days and fewer difficult days. Daniel you are so important to this family - always remember that.
Really heart breaking for you - so frustrating that is so hard to get help needed within NHS.
ReplyDeletethank you mums make lists. yes very frustrating - but at least everyone we have come across in the NHS has been very caring and knows what they're talking about in relation to Josh (unlike those in the education system who were utterly clueless and made things worse for him). They are just extremely overstretched and under resourced. x
DeleteIt must be absolutely heartbreaking as a mum to read this from your gorgeous boy. So difficult for you both and you have to try to do your best for all your children. That's very difficult! I wonder if you showed this letter to the relevant service provider, exaggerate it even more adding in any thing else he might have said and push it as a 'crisis' would they act any quicker?
ReplyDeletePlease excuse me for being so direct, we've only just met! It's just that I know that we sometimes have to do these things, as unpalatable as it feels, just to get the authorities to listen.
Also, In Ireland some Ed Psychs run children's courses in schools, kind of like counselling but helps them work through issues. For example there's 'Rainbows' that helps with separation and bereavement and I know there's a bullying one too. I wonder if there's anything like that your son could avail of? A 'sibling' type group? being in touch with other children in similar situations might help?
I do hope someone listens and responds and I hope I don't offend by being so forward! My intentions are good :-)
xx Jazzy
Thanks so much for your helpful and supportive words Jazzygal. I kind of resigned myself to the fact we are on our own after the battles (and I don't use that word lightly - they were real emotionally draining, family-tearing apart, staying up all night dealing with paperwork battles) with the education system i have discovered that it is not worth the stress of continuing to fight. We just try to do the best we can ourselves for Josh. They did used to run a good social communication club which was of HUGE benefit to J and also a siblings club (for when D gets a bit older) - but all that has stopped now because of budget cuts. Even the NAS who has a great befriending service that would be perfect for J, doesn't have it available in our area because of lack of resources. Such a shame as that would be perfect. thanks again for your comments - look forward to staying in touch with your blog. x
DeleteSounds like you guys have a lot to deal with, but it is also very clear what great parents you are and what a great family unit you have. We have special issues with Seth they are all physical but i know how difficult it can be as a parent to go through these things.
ReplyDeleteKeep up the good work, I'm sure your children know how loved they are xxx
Thank you Giftsfromthepirates for your kind words of encouragement - much appreciated x
DeleteI second what Jazzygal says, and if it's not being provided, is there any chance that you/other local parents could set something up for your children? I help run/attend several groups organised by parents for children with special needs/aspergers/autism and/or their siblings. My eldest daughter also finds it very difficult at times having a young brother with aspergers, but at 20, she at least is mature enough to be able to cope better x
ReplyDeleteThank you for your comment Lookingforbluesky. I think there are some groups / youth clubs for siblings of children with ASD but they all seem to start from an older age group. We are lucky to have very supportive home-ed groups around here and when we do any social activities with them, I think it helps Daniel realise that others have similar issues too. Granny is taking Josh out this saturday so I will try to do something really special with Dan to make the most of the opportunity. x
DeleteSo brave of you to share this. I am very aware of how having a child with a SEN can affect the other children in the family (I have 6 children, 2 with SEN's).
ReplyDeleteI don't know which area you're in and if they have such a thing, you may have been there,done it,got the T-shirt so to speak already but I do know a lady in my area whose daughter is going through the same thing due to her brothers Aspergers. She has found her local Parent Carers group helpful for herself and then Young Carer's for her daughter. Her daughter isn't a young carer but she qualifies in that having a brother which such difficulties can have a negative impact on her life at times. I know the parent carer's group also has helped my friend by signposting with other sources of support too.
This may be duff info if schemes like this aren't available where you are, or if you've tried them already. Just a thought.
It very much sounds like you are doing your very best by all of your family though & I'm sure even children with siblings that don't have Aspergers feel like running away at times too. My husband used to 'run away' to his Nan's lots when he was little. Made his parents feel awful. They all laugh about it now though & my husband has the loveliest of parents, he truly does.
I'm not making light of things, I hope I haven't come across that way.
Just wanted to send you all my very best & wish you the best with maybe finding some help out there xxx
thanks so much for your comments Jo. I know that I do need to spend some time thinking and looking into whether there are any other options available for Dan - but I don't often get a chance to have 'thinking space'. Thanks also for the link. Will take a look. best wishes x
DeleteI just left a comment but then remembered this site... it may or may not be useful but thought I'd pass it on http://www.carersuk.org/ best wishes & a big hug, Jo xxx
ReplyDelete