Aspergers?

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Discussion

AMLK

407 posts

184 months

Saturday 3rd September 2016
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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.

oldbanger

Original Poster:

4,316 posts

237 months

Friday 21st October 2016
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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

Original Poster:

4,316 posts

237 months

Thursday 24th November 2016
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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.

mad4amanda

2,410 posts

163 months

Friday 25th November 2016
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Things are progressing for you all, small steps at times !
My wife is now employed by a Medway based charity:
http://www.medway-magic.org/index.php
They are trying to offer support to families and really bridge the gap between families and "the system"

At the moment in addition to advice, support and activities they offer places aa an alternative provision to mainstream schools where the students just cant cope with a mainstream setting and before a specialist placement can be found.
They are looking to expand creating a free school for ASD students and even are looking to create residential "safe" houses for young adults too.

If they can help anyone local enough to draw on them directly please contact them also they have a mine of contacts and information which may be accessible nationally?

Re CAMHS report/referral as a parent and especially with some evidence from the school you can make a self referral, talk to the school?

Finally they are constantly raising funds to support their work and expand the services they offer and would welcome new sponsors if anyone is able to help?


Edited by mad4amanda on Friday 25th November 07:30

oldbanger

Original Poster:

4,316 posts

237 months

Friday 25th November 2016
quotequote all
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.

mad4amanda

2,410 posts

163 months

Friday 25th November 2016
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Just so you know you may not get an Aspergers diagnosis as most local authorities only give an ASC diagnosis (Autistic spectrum condition ); but that is nothing to worry about you will still be able to access the same provisions.

AMLK

407 posts

184 months

Monday 28th November 2016
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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.

Mad4amanda - the charity your wife works for looks great, more of that kind of thing is definitely needed.

We seem to be back at square one with Anna. She has become quite sullen and moody again, and she admitted the other weekend she was feeling suicidal again. I immediately got on the phone to CAHMS leaving a message for her key worker to get back to us urgently. The person I spoke to promised her key worker would get back to us, although warned us that Anna was a closed case and may need another referral. That week at school her guidance counsellor spoke to me and said she was concerned about Anna and that I should see our GP and put in an urgent referral to CAHMs. I rang the GP and spoke to a locum, he said she would need to be seen the next day to get a referral, but also pointed out that they had a very long waiting list. He then went on to say that she was rather young to be a high school and this could be part of the problem!!!! Btw she is NOT too young, she is the same age as everyone else in her year! She saw our GP then next day which was very difficult. Anna was extremely uncooperative saying it was a waste of time being there and refused to admit to any issues. The GP was great though, and saw through this mask, urgently referring her to CAHMS recommending she sees a psychiatrist rather than a psychologist. Following week I still haven't heard from her key worker so leave another message - 2 weeks and I still haven't heard anything! The charity that is supporting us chased up her referral and discovered that 1) she is NOT a closed case 2) the referral is sitting on her key workers desk and 3) they are considering her case going to an assessment board for decision which would take about 18 weeks!!!! And to think I used to be proud to work for the NHS, now I am not sure sure when it is failing us soo much when we meed it the most.

As for her ASD assessments, we are back to square one with that too. The charity chased that up for us too. Apparently (without informing us) the local children's services have cancelled Anna's case as she is attending a school out of the county, so she now has to be re-referred for assessment in the county her school is in. The thing is they may not accept us because it is not OUR county's NHS board - arrgghh! The charity and her school are looking in to this for us.

We are also really struggling to get her to school a lot of the time as most of her insecurities lie there, every morning is a struggle and some days we just don't win the battle. She is scared of taking the bus (she only has to take it home 3 days a week), she hates all the changing of rooms and teachers, finds her classes too noisy to concentrate in and she is petrified of the sheer number of people. She is also really struggling socially at school (always a problem of hers), having no friends to support or understand her. Fortunately the school are fantastic. I had a meeting last week with her learning support teacher and her guidance counsellor. She has been given a pass to get out of her lessons 2 mins early so she can reach her next class before the masses cram the corridors. At times when she is completely overwhelmed she is allowed to complete her lessons in the support hub, she is also allowed to do her tests there. She has been allowed to drop one lesson a day (modern languages), to give her down time in the support hub to chill out, catch up with homework or to chat with the team. All her teachers are aware of her situation and are being supportive in adapting to her. Her counsellor has also referred her to a Tuesday lunchtime club, which she will hopefully start tommorrow, where someone brings therapy dogs in. They can take them out for walks, or just chill out and play with them.

Sorry for the long post, I just needed to rant and let it all out.

Hope you are all having an easier time than us.


superlightr

12,842 posts

262 months

Monday 28th November 2016
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AMLK said:
We are also really struggling to get her to school a lot of the time as most of her insecurities lie there, every morning is a struggle and some days we just don't win the battle. She is scared of taking the bus (she only has to take it home 3 days a week), she hates all the changing of rooms and teachers, finds her classes too noisy to concentrate in and she is petrified of the sheer number of people. She is also really struggling socially at school (always a problem of hers), having no friends to support or understand her. Fortunately the school are fantastic. I had a meeting last week with her learning support teacher and her guidance counsellor. She has been given a pass to get out of her lessons 2 mins early so she can reach her next class before the masses cram the corridors. At times when she is completely overwhelmed she is allowed to complete her lessons in the support hub, she is also allowed to do her tests there. She has been allowed to drop one lesson a day (modern languages), to give her down time in the support hub to chill out, catch up with homework or to chat with the team. All her teachers are aware of her situation and are being supportive in adapting to her. Her counsellor has also referred her to a Tuesday lunchtime club, which she will hopefully start tommorrow, where someone brings therapy dogs in. They can take them out for walks, or just chill out and play with them.

Sorry for the long post, I just needed to rant and let it all out.

Hope you are all having an easier time than us.
Its good to post and get a sounding board. My wife was only saying this morning about how insulated and isolated it makes you feel as all you can do is inward look. She even said what have we done to be punished like this? We have been really struggling over the years. Almost tore the family apart some very dark places for both my wife and I. Thankfully brighter at present.

Your post about the school is almost identical to how our experience of it is. Luckily our twin girls are happy to come back by bus so that's not an issue for them - they get a later bus so its not too crowded.
You may want to ask the school if they can drop some homework full stop if required. We did and our school allowed them from some of their classes as again this was just creating a nightmare at home and they were getting so stressed over it all.

Private counselling for 1 of the twins due to suicidal/self harm expressions and the other some other counselling both of which is helping.

There are glimmers of hope and light which can just as easily get clouded over by the storms - just keep remembering the light and keep hope.

oldbanger

Original Poster:

4,316 posts

237 months

Monday 28th November 2016
quotequote all
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.

AMLK

407 posts

184 months

Monday 5th December 2016
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superlightr said:
Its good to post and get a sounding board. My wife was only saying this morning about how insulated and isolated it makes you feel as all you can do is inward look. She even said what have we done to be punished like this? We have been really struggling over the years. Almost tore the family apart some very dark places for both my wife and I. Thankfully brighter at present.

Your post about the school is almost identical to how our experience of it is. Luckily our twin girls are happy to come back by bus so that's not an issue for them - they get a later bus so its not too crowded.
You may want to ask the school if they can drop some homework full stop if required. We did and our school allowed them from some of their classes as again this was just creating a nightmare at home and they were getting so stressed over it all.

Private counselling for 1 of the twins due to suicidal/self harm expressions and the other some other counselling both of which is helping.

There are glimmers of hope and light which can just as easily get clouded over by the storms - just keep remembering the light and keep hope.
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

SpeckledJim

31,608 posts

252 months

Monday 5th December 2016
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oldbanger said:
dhutch said:
My first post (above) was a bit of a brain dump, but one thing I didn't say was top job for taking these two kids on.
Thanks Daniel. That means a great deal.
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.

beer

oldbanger

Original Poster:

4,316 posts

237 months

Tuesday 6th December 2016
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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

Original Poster:

4,316 posts

237 months

Tuesday 6th December 2016
quotequote all
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.

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

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.



AMLK

407 posts

184 months

Monday 16th January 2017
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I am going to start by apologising because this post is likely to be long and include lots of moans, so SORRY!

I feel like I am banging my head against a brick wall, why is it so hard to get the help and support we need? Why does it seem like nobody cares, they say they will help look in to things but don't. I don't know where to turn anymore, and I am too tired from fighting the system.

It seems like we have fallen through the net. We live in Fife, Scotland, but our daughter goes to school in Perth and Kinross (we live near the border of the 2 counties, half the kids in the village go to high school in Kinross, so this is not unusual). Children services in NHS Fife have cancelled her autism assessment because she goes to school out of county. I spoke to them today and they refuse to help because they cannot 'cross the border' to do her educational psychology assessment, therefore will not do any of them. They have sent a letter to community paediatric in Perth (one in July 2016, another one in Dec) asking them to take us on. For a start they have asked the wrong department, as it is CAMHS in Perth that do autism assessments (even I found that info from a quick Google). I spoke to CAMHS Perth and they have never received a referral for her, also they said they would not accept one as she doesn't live in their NHS area. So to sum it up nobody will do her assessments. Aaarrrggghhh!

It is all bloody politics, can nobody see that this is a child they are refusing to help. So much for the NHS being for everyone. How come I work for an NHS department and we treat people from 4 different NHS regions yet our daughter cannot get help because of her school's postcode.

To add insult to injury I have just received a letter regarding Anna's CAMHS (NHS Fife) appointment in Dec. They summarised the letter saying that ultimately they do not think she is at immediate harm to herself therefore there is nothing more they can do for us. So a severely depressed child is not worthy of mental health support because she isn't deemed to commit suicide at this current moment. What is wrong with people.

I am really struggling with everything at the moment. I have been signed off work for 1 month due to pain. My boss rang me on Friday and asked how I was doing. She said she was about to make a procurement order for the equipment that OT say I need but she is not prepared to do it as she is not convinced I am coming back. I insisted that I am coming back. She then said that perhaps I should think about reducing my hours or whether I should be returning at all considering my health! What a bloody cheek. She has also said to a colleague of mine that perhaps they should think about getting another job because they have been off sick for a while. This attitude is not helping me at all. I mentioned this to my gp today and she was furious. I am now signed off for another month, this time with depression (something my boss has always had a negative view of). Can't wait to ring an tell her.

Sorry again for the moan, but as you can see I am finding things tough and it helps to rant.

oldbanger

Original Poster:

4,316 posts

237 months

Monday 16th January 2017
quotequote all
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...

mad4amanda

2,410 posts

163 months

Monday 16th January 2017
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It should be the placing county (where you live) that request the assessment from the county where they are placed its basically whoever holds the EHCP or if the school are saying they need it they approach the Local Authority that gave the EHCP.
Not an uncommon occurrence and one they should be able to deal with?

AMLK

407 posts

184 months

Tuesday 17th January 2017
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Thanks guys.

Oldbanger - thanks I contacted One Stop Shop last week. They said they would look into things for me and email me an update on Fri regardless of whether they had achieved anything. Unsurprisingly no email.
mad4amanda - we do not have an ehcp as she has not been officially diagnosed with any disorder. The school none the less are doing everything they can for us.

This morning was horrendous. As usual we had the refusing to go to school, the fight and arguments to get her out of bed and dressed, (forget breakfast, teeth cleaning and hair brushed - that would be going too far!). We put our foot down and said she was going to school as we needed them to see and understand her problems to be able to sort them. She ended up running away. I eventually got her in the car but she kept undoing her seat belt, so I ended up having to threaten to take her to A&E as a suicide risk (I would have too), but this worked as she is petrified of hospitals. I feel such a awful, useless parent that I ended resorting to shouting and threatening her.

Amazingly she calmed down, I apologised, explaining I am trying to do this to help her, and it kills me that I am hurting her to do it. I think she is beginning to understand, though she suggested that she gets arrested then maybe the government will listen to her case! At school I spoke to her learning support teacher (who is an amazing person). She is staying with her as long as she needs to today down in the support hub, doing lessons there. Her guidance teacher spoke with CAMHS Perth late yesterday and they have come to the decision that the quickest and hopefully easiest solution is for the school to make a new ASD referral straight to them, ignoring all the current mess. Let us hope and pray this works and they accept her referral.

I am now pinning all my hopes on to her school sorting things out for us, although I have guilt associated with this as I have found another school I would like her to go to, but this would rely on her getting a diagnosis and the LA agreeing to pay for it - a rather big hope. The school I have found is about 1 hour away from us on the edge of the Caingorms. It specialises in ASD, currently having 30 kids at the school. It is a day or residential school and also provides respite care. It is my dream and aim to get her in there as I feel it is somewhere she could truly flourish.

My parents are thinking about coming up to help me out chasing people. I feel guilty about this as they have enough of their own problems, (My Grandad is on his death bed, my Dad is waiting on an op, Mum has many health problems herself), but I think they recognised the depth of hole I am in, barely able to stop myself drowning.

oldbanger

Original Poster:

4,316 posts

237 months

Tuesday 17th January 2017
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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

Original Poster:

4,316 posts

237 months

Tuesday 24th January 2017
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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.

Hammer67

5,706 posts

183 months

Tuesday 24th January 2017
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AMLK, oldbanger. My footsteps are on the path you're both treading. I feel your pain. Stay strong chaps.