Aspergers?

[oldbanger]

AMLK I've dropped you another PM, hopefully you have got it.

Hopefully now things are out in the open there can be some resolution. I'll keep my fingers crossed.

[oldbanger]

The curly hair project has also been a great help by the way
http://thegirlwiththecurlyhair.co.uk

Glad to be of help

[oldbanger]

AMLK I am thinking of you, and I am very glad to see that there has been some movement now

[oldbanger]

AMLK said:

Thanks oldbanger, hope you are feeling better and are in less pain.

Good day so far. Took Anna swimming with a couple of friends and they had a great time. Just chilling now.

Can see light at the end of the tunnel now.

Hope everyone else is getting on ok.

Thanks again for everyone's support, it good to know I am not alone.

I am a bit better, thanks.

[oldbanger]

I thought I'd give a bit of update.

Our older child has just been referred for assessment for autism and we have confirmation that she is on the waiting list. I had also got a CAHMS referral and she is due to start psychotherapy next week.

Things aren't so progressed for our younger girl but both autism referral and camhs are in hand. Her behaviour is still very challenging but the violent meltdowns have noticeably decreased.

Adoption support have come through with an intensive therapeutic parenting program which has just started.

So it's all go, pretty intense, but promising.

On the other hand, it turns out I do have a problem with my heart (I was admitted with chest pains a few months ago, ultimately thought to be nerve pain at the time.) I still have the chest pain intermittently. However I am on the bounce as much as I can. My other half, however, isn't coping right now. So I am on my own when it comes to keeping things going day to day.

[oldbanger]

AMLK said:

Thought it was time I posted an update.

Firstly, oldbanger I am pleased you are getting some support. How has the therapy gone? I hope it has made things easier for you all.

Anna had a course of CBT last term, and we are due our 3month review next week. I can happily say we have a different child on our hands now. She seems more able to rationalise things and cope with situations better. Things aren't perfect but she is much more pleasant towards us, so home life is much more relaxed.

We have been through a lot of ups and downs as well. My health has not been great (something we all have to learn to deal with as it is a degenerative problem), my Dad was very ill and in intensive care at one point but fortunately has made a miraculous recovery. We have also hit a brick wall with Anna's autism referral. All of this has led to me suffering from severe depression, but I am seeing the light at the end of the tunnel now.

As for Anna's referral I am really angry about the lack of help and support we have received. It has been a year since we saw the paediatrician referred Anna for assessments but we still have not had any. After lots of phone calls and being pushed from pillar to post I finally found out that our consent form got sent to the wrong address. We finally got put on the assessment list in June, but also got told it would be a year's wait!!! Unbelievable, plus we can't get any support til the assessments are done.

Anna started high school in August, but they have been amazing. We had lots of meetings last term with high school and primary to make sure everything was in place for her, and so all her teachers know about her 'quirks'. She has had a couple of wobbles at school, but the support team have been fab with her. Considering the massive change from primary she seems to be managing quite well, even though she says she doesn't like school, but her attitude doesn't indicate that.

I have found a charity that runs in the neighbouring county that supports kids and their families undergoing autism diagnosis. Because Anna goes to school in that county they said they will support us. I should be hearing about our first meeting this week.

Sorry for the long post. Hope you are all doing ok.

Hi AMLK,

I've only just spotted this post. It's good to see things are more stable with you.

Things are better. My older girl has been offered a year's psychotherapy via CAHMS for her anxiety which started in the summer and she's also now being assessed for Aspergers and sensory processing disorder following 6 months or so on the waiting list. The school SEN did the referral.

My younger girl is slightly improved - few meltdowns and physical attacks now. She's still prone to emotional outbursts but it's reducing. Unfortunately CAHMS haven't managed to offer her anything and the report from them was really garbled. No autism referral as yet - though the school have mentioned making one.

We had loads of therapeutic parenting training, including the intensive "safebase" programme aimed at adoptive parents.

The OH unfortunately had a breakdown and has been ill for about 5 months now. On the plus side once all the tests were done the hospital decided I didn't have a heart condition after all and it's "just" transferred pain form nerve/tendon damage.

I now also have an au pair which is a massive help, though the kids have taken a while to get used to her. It's a new thing for us all, so we'll see how long the arrangement lasts.

Edited by oldbanger on Friday 21st October 15:07

[oldbanger]

By way of an update, we're getting a diagnosis for my older girl tomorrow. The pediatrician had already said she was going to recommend aspergers so we'll see what the professionals say in the morning. Ultimately if there is a diagnosis this can only be a positive. It will really help us to be able to show its more than just misbehaviour. She's a bright kid but has almost no social skills at all. They'll come in time, I am sure.

[oldbanger]

Thanks mad4amanda ... hopefully this is something that will help people locally to you.

We've been quite blessed I think as, once I'd properly blown the whistle, we started getting additional help, even without any diagnosis. For example, my eldest child's secondary school recognised straight away that she was going to need extra support and she was offered access to the quiet room club for use during break times.

My eldest is definitely on the spectrum. Because there are some questions marks about her early development there has been a little debate about whether an autism spectrum or Asperger's diagnosis would fit better, but it's now decided it'll be Asperger's.

[oldbanger]

AMLK said:

Sorry for not posting for a while, but I wasn't quite sure what to write because unfortunately things have not been smooth running since my last post.

Firstly Oldbanger, I pleased things are working out for you and that you have got a diagnosis for your eldest. I hope you get things sorted for your youngest too. How is your partner doing? I hope they are improving, I can fully sympathise with you both as I am currently struggling to keep things together myself.

My OH is still out of action right now, unfortunately.

The diagnosis for our older child is pretty positive as far as I am concerned.

Things are a bit harder for our youngest. The school are sympathetic but struggle to understand what to do. We have the additional complication that adoption support are involved and none of the agencies/school are talking to each other, and are waiting to see what the other agencies are intending to do, as it is not clear whether this is aspergers, attachment disorder or both. CAHMS have started something, but aside from sending appointment times haven't been clear what it is they are offering/doing. Their reports are so garbled I suspect they don't really know themselves.

I am so sorry to hear you've had so many setbacks due to miscommunication and a lack of coordination. It's great to see that the charity are fighting your corner. Ultimately it's your child that suffers when people sit on their hands.

If you need some to rant to you are welcome to drop me a PM.

[oldbanger]

AMLK said:

Thank you for your kind words. I am trying to stay positive but at the moment I am not succeeding. It doesn't help that my illness has flared up again causing me a lot of pain. I am struggling to manage to get myself to work but know I must otherwise there is no way Anna would go to school.

Anna is no better, I noticed on her phone and saw things written like 'the monsters are not under my bed, they are in my head', 'black like my soul', 'I'm drowning in my own tears'. I wish I could help her because I understand to well but she just shuns me. Still no response from CAHMs.

Oldbanger - thank you so much for you offer of support, but I feel you have enough on your plate with your OH out of action, you don't need my problems too x

It is awful to feel isolated. So the offer still stands, if you ever need it.

It's awfully hard to see your daughter writing and thinking such things. I have personally found that therapeutic parenting techniques have helped, over time.

As a former depression sufferer I also found a few simple things quite helpful to raise mood, including vitamin d3 and fish oils, magnesium supplements, sunlight, exercise, and cutting right back on sugar/simple starches. I have no idea if these things might help your daughter whilst you wait for proper help.

Please look after yourself too. Alongside looking out for the kids, I am the only earner, studying for a diploma and looking to get a better paid job. I am having to wind my neck in right now as I have started to run myself into the ground. I did get an au pair though. It is an extra expense but I could not cope without the extra pair of hands.

Edited by oldbanger on Tuesday 6th December 16:40

Edited by oldbanger on Wednesday 7th December 13:33

[oldbanger]

SpeckledJim said:

Seconded. Those who volunteer to care for challenging children are the very very best of us. I have unending respect for folk like yourself.

I am continually ashamed that it seems I am not a good enough person to volunteer to do likewise, as I have no good excuse why not.

Well to be fair they weren't challenging until they started growing bigger.

If you mean taking on other people's kids, then everyone who does has a reason why they do it, rather than not having a reason why not. Mostly, they want kids in their lives, for some it's also an income (e.g. fostering), for others it's because they're family. I can't see why you'd be ashamed if you don't fall into one of these camps.

[oldbanger]

It's ok to moan on here. It's no surprise that you're at your wits end with everything that's going on.

My immediate thought was that you need an advocate of some sort. I've personally found out local autism group helpful. Are these guys likely to be of any help? http://www.scottishautism.org/services-support/sup...

[oldbanger]

I have been very lucky to access practical parenting training through adoption support, learning therapeutic techniques to help with managing behaviour - I have to deal with school refusal, hair and teeth brushing, running off, bedtime meltdowns, thrown furtniture and being physically attacked.

The Facebook group has some good videos in the pinned posts (I don't know if you're on it) and I found this book very usable too https://www.amazon.co.uk/Explosive-Child-Understan...

They won't solve problems overnight, but the change in tack from me has helped to grease the wheels at home a great deal.

[oldbanger]

My youngest is suffering a from a virus and is very irritable. So much so that I have had two days of sustained verbal and physical attacks from her. Yesterday starting as soon as I got through the door. I am the only one working so I am sure she feels like I neglect her but bills need to be paid, and her dad and the au pair are both at home full time. Her birthday is a couple of weeks away and as party organiser I am also focus for her intense anxieties about the event. Yesterday's meltdown was because I have ordered the wrong party favours, which have now been ripped open and chucked everywhere.

I have some stupid fantasy that she'll get it when she reaches adulthood and realise I try to do the best I can. I am not sure if that will ever come true. She'll probably still be screaming and smashing stuff in my face over stupid stuff then. Yeesh.

[oldbanger]

Hammer67 said:

AMLK, oldbanger. My footsteps are on the path you're both treading. I feel your pain. Stay strong chaps.

Some days just seem particularly bleak, you know?

I looked after my siblings and in many ways also my parents when I was younger. So I wasn't ever going to have kids, not on your nelly. So selfish, eh? It seems like just desserts that just as I finally started getting my life on track that I find my mission in life is to look after two children with so many troubles. I would be over the moon to know they'd be capable of turning into self-supporting, capable adults.

[oldbanger]

Thanks Hammer67. I have followed your story and it's been good to see things progress.

[oldbanger]

AMLK said:

Thanks hammer67, it is always good to hear things will improve.
Oldbanger I really feel for you, sometimes you wonder why you bother as nothing is right.
I have been through bad times recently, hence not posting much. I am signed off work with depression (on new meds, hopefully kick in soon), since I am off work it strengthens my daughter's case for not going to school, grrrr. My arthritis is also very bad (probably due to stress!), and it is hard not to be grumpy when I am in so much pain. It also seems my boss wants to get rid of me which really help me feel better,not! My parents realised the depths I had got into so came up for a week to help.
My house is now in a presentable condition again (thanks mum), and I have a letter of complaint written to go to nhs Fife - on investigation they made more cock ups than we knew (thanks Dad). My gp is being fab, contacting my occ health to say I AM fit for work as they say I am not thanks to my boss's exaggerations. CAMHS Dundee have accepted our case (yes another county to add to the mix!) so hopefully we will get our assessments before this year is over.
I can finally see light at the end of the tunnel again now.
Oldbanger, hang in there x

AMLK it sounds like you've been through the mill, so it's good to see that your parents are helping and there's a way forward

Things are generally a lot better with the kids these days, though that does mean that the relapses can be a bit of a nasty shock. Things are broadly positive to be honest.

[oldbanger]

Sorry to read things are going backwards again AMLK. You must be so terribly sad and frustrated.

I don't have any suggestions right now but I wanted to tell you that I know you guys will find a way, eventually. It's good to read that your parents are still staying with you to add some support too.

Hang in there girl. You've been working so hard to get things resolved for your daughter.

[oldbanger]

This is fab AMLK. I'm so glad you've finally had the assessment done and have a clear diagnosis.

[oldbanger]

How are things going AMLK?