any suggestions

Hi Yorkshirelass and again Modal,

    Great to be back. Lightening strike killed the phone, internet and computer. BT say it won't be up before mid Jan 2015. Snatching some dongle time as and when I can.

I so hear both your predicaments. We no longer holiday as a family, unless you consider the occassional night in an a Travelodge to attend the odd funeral. It's just too stressful. Both my lads get highly anxious when in unfamiliar environments so it's just not worth the agrivation, but the longer time has gone on the less not going on holiday bothers me now.

Sadly, most of my family are dead now. Mum very prematurely to a stroke and Dad to Parkinsons. Seems I've spent all my life caring for my loved ones old and young.

After mums death, I took over my Grans care. She was severely physically disabled with two knee replacements that were too old to re-replace. Lovely generous soul and more of a mum to me than my own mother. I grew up living with my gran and It's her I miss her the most. My mum became very unwell after the birth of my youngest brother, so I became a young carer from very early on.

My youngest brother is undiagnosed ASD and lives alone, but quite close by. He eats with us most weeks and comes down when he needs help to mend something. If it wasn't for eating with us, he would have a diet of just Beans on toast and KFC. I guess their are many out their that are cared for by family members and friends who go through their whole life dependant of the generosity of friends and family helping them to manage.

My older brother died a few years back, He took his own life after some severe workplace bullying. He suffered with OCD and other conditions and judging by the way he was, most of the family were convinced he had ASD also.

(Not to lean on stereotypes or anything, but both were in computers and IT.)

I don't see my middle brother much. He was diagnosed, but has lost his way in life.

If you are talking about guilt, mine is up there. It's clear the genetic influence is squared with my family. And it's taken me years to acknowledge and accept that and the implications it's had for my own children.

As time has gone on, I've learned to make my peace with it though. The knowledge of the condition and my own diagnosis has given me the tools and somehow lifted that guilt.

I've tried a lot of different types of anti-depressants, but I seem to have a very strong reaction to them. I now rely on St Johns Wort for severe lows and food therapy mainly.

Finding this forum has been a great help for me also. I live rurally and am quite issolated with the boys care etc, so being able to reach out to my tribe and those affected by ASD is very important.

Childcare is always an issue. Despite their ages it's not always safe to leave them home alone. I chanced it the other day and came home to a hole in my kitchen ceiling. (Don't ask!) 

I married a long term friend of mine and quite late in life, following the death of a former partner and a host of failed 'relationships'.

My husband and I run on different time zones though. He does the mornings and I do the nights. It's hard to maintain any quality time when you are ships passing in the night and things do get fraught, but we try our best.

Our darkest time was when he had a nervous breakdown. (Also due to workplace bullying and some outside issues we had which were beyond our control.) It fell on me to manage the kids. (I have four) and to help him. It was a very lonely time and you do feel resentment and frustration, but the overwhelming feeling was one of exhaustion.

His recovery was protracted and he suffered setbacks but, he's doing well now. He manages his time way better than he used to and no longer judges his worth by excessive hours and societies expectations. He's a different man since the breakdown, but we stand by one another. He's kind to me and my boys now, but it hasn't always been the case, as he was angry and frustrated for a long while. I don't think he fully understands my children or what it's like to live in their world yet he does as much as he feels he can manage and that's all I can expect really.

For me the exhaustion is still ongoing. Just getting through the days is an extreme effort what with the boys illness and more recently, my own failing health. It's hard to explain to those who don't live it. I seldom talk to friends, because, as you say, they quickly get board and have no real comprehension. I had a regular visitor at one point, but as I listened to her talk of special needs and those with diabilities, I realized she was actually very intollerant and had no real insight in to my own childrens condition. Describing those with diasabilities, as the naughty children etc.

As you can imagine, many without support can take the wrong path in life, I've worked extremely hard to ensure my boys don't become a statistic. Despite their difficulties each has their own unique gift and I've focussed on that to help them overcome those hurdles.

Sadly, they too have also fallen victim to bullies and the assaults have been accross the spectrum. Physical assaults (My son was set alight on a bus by a stranger), Cyber bullying, Homophobia and disability discrimination. Yet as inderviduals, they have truly triumphed over such adversity. It's also left it's scars.

My eldest has taught himself Japanese and currently lives in Japan as a student and voluntary teacher. (despite being Dyslexic) my second eldest is an Ambassidor for Autism and uses his spare time to mentor those in FE who need support with transition and intergration, as well as supporting staff in Autism Awareness training, The third eldest has just started self-employment (age 17) using his manual & mechanical skills and my youngest is an IT whizz and sound technician. None; so far, have ever been in trouble and all have a bright future ahead of them, but only with the right support behind them. The problem is their is a limit to ones capacity to support them (Health permitting.) and little help from the adult social care network that appreeciates high functioning youngsters with their level of poor executive function etc.

Their will always be tough days and their lives are far from perfect in living with such profound difficulties and with so much support needed to get them through the average day, but they are able to make a positive contribution to society if given the right tools.

Modal; like you, I'm full of fear, (Every day!) but the older I get the more I realize that being who I am and having the awful experiences I've endured in my life has made me all the more determined to ensure my kids don't suffer the same fate as me.

It was only once I'd experienced my own profound lows that I found the tools to help my own sons. I'm sure you too will find the strength to reassure your sons and that your experiences will serve as a valuable lesson to help them.

It's often because of such adversity and difficulties that we end up having to think outside the box and embarking on the road less travelled.

Give yourself time to heal. Make time for you and your family and be kind to yourself. Take each day at a time and things will not become so overwhelming.

Mindfulness is not about making things change, it's about making us more aware of how we feel and learning to accept it rather than reproach ourselves all the time. You are where you need to be right now, but you won't always be their. Things do change, But in my experience it's truely facilitated by acceptance.

Sarah Hendrix has done a few videos of late focused on 'Health and Wellbeing and she's done a video for GAP (Good Autism Practice.)

www.youtube.com/watch

Also she has done one on anxiety.

'How anxiety affects everything.'

www.youtube.com/watch

As a late diagnosed adult, caring for children on the Spectrum, I too have come to realize that Happiness and wellbeing have a part to play in our lives. Our difficultes are profound and cannot be ignored, but we are more than just a diagnosis. And If I' (with all my faults and the profound traumas in life) am able to contibute, even on the smallest level in helping others, then my experiences have not all been in vain.

You will have tough days, but let's face it, so does everyone. Take Care

Coogybear

Hi Yorkshirelass and again Modal,

    Great to be back. Lightening strike killed the phone, internet and computer. BT say it won't be up before mid Jan 2015. Snatching some dongle time as and when I can.

I so hear both your predicaments. We no longer holiday as a family, unless you consider the occassional night in an a Travelodge to attend the odd funeral. It's just too stressful. Both my lads get highly anxious when in unfamiliar environments so it's just not worth the agrivation, but the longer time has gone on the less not going on holiday bothers me now.

Sadly, most of my family are dead now. Mum very prematurely to a stroke and Dad to Parkinsons. Seems I've spent all my life caring for my loved ones old and young.

After mums death, I took over my Grans care. She was severely physically disabled with two knee replacements that were too old to re-replace. Lovely generous soul and more of a mum to me than my own mother. I grew up living with my gran and It's her I miss her the most. My mum became very unwell after the birth of my youngest brother, so I became a young carer from very early on.

My youngest brother is undiagnosed ASD and lives alone, but quite close by. He eats with us most weeks and comes down when he needs help to mend something. If it wasn't for eating with us, he would have a diet of just Beans on toast and KFC. I guess their are many out their that are cared for by family members and friends who go through their whole life dependant of the generosity of friends and family helping them to manage.

My older brother died a few years back, He took his own life after some severe workplace bullying. He suffered with OCD and other conditions and judging by the way he was, most of the family were convinced he had ASD also.

(Not to lean on stereotypes or anything, but both were in computers and IT.)

I don't see my middle brother much. He was diagnosed, but has lost his way in life.

If you are talking about guilt, mine is up there. It's clear the genetic influence is squared with my family. And it's taken me years to acknowledge and accept that and the implications it's had for my own children.

As time has gone on, I've learned to make my peace with it though. The knowledge of the condition and my own diagnosis has given me the tools and somehow lifted that guilt.

I've tried a lot of different types of anti-depressants, but I seem to have a very strong reaction to them. I now rely on St Johns Wort for severe lows and food therapy mainly.

Finding this forum has been a great help for me also. I live rurally and am quite issolated with the boys care etc, so being able to reach out to my tribe and those affected by ASD is very important.

Childcare is always an issue. Despite their ages it's not always safe to leave them home alone. I chanced it the other day and came home to a hole in my kitchen ceiling. (Don't ask!) 

I married a long term friend of mine and quite late in life, following the death of a former partner and a host of failed 'relationships'.

My husband and I run on different time zones though. He does the mornings and I do the nights. It's hard to maintain any quality time when you are ships passing in the night and things do get fraught, but we try our best.

Our darkest time was when he had a nervous breakdown. (Also due to workplace bullying and some outside issues we had which were beyond our control.) It fell on me to manage the kids. (I have four) and to help him. It was a very lonely time and you do feel resentment and frustration, but the overwhelming feeling was one of exhaustion.

His recovery was protracted and he suffered setbacks but, he's doing well now. He manages his time way better than he used to and no longer judges his worth by excessive hours and societies expectations. He's a different man since the breakdown, but we stand by one another. He's kind to me and my boys now, but it hasn't always been the case, as he was angry and frustrated for a long while. I don't think he fully understands my children or what it's like to live in their world yet he does as much as he feels he can manage and that's all I can expect really.

For me the exhaustion is still ongoing. Just getting through the days is an extreme effort what with the boys illness and more recently, my own failing health. It's hard to explain to those who don't live it. I seldom talk to friends, because, as you say, they quickly get board and have no real comprehension. I had a regular visitor at one point, but as I listened to her talk of special needs and those with diabilities, I realized she was actually very intollerant and had no real insight in to my own childrens condition. Describing those with diasabilities, as the naughty children etc.

As you can imagine, many without support can take the wrong path in life, I've worked extremely hard to ensure my boys don't become a statistic. Despite their difficulties each has their own unique gift and I've focussed on that to help them overcome those hurdles.

Sadly, they too have also fallen victim to bullies and the assaults have been accross the spectrum. Physical assaults (My son was set alight on a bus by a stranger), Cyber bullying, Homophobia and disability discrimination. Yet as inderviduals, they have truly triumphed over such adversity. It's also left it's scars.

My eldest has taught himself Japanese and currently lives in Japan as a student and voluntary teacher. (despite being Dyslexic) my second eldest is an Ambassidor for Autism and uses his spare time to mentor those in FE who need support with transition and intergration, as well as supporting staff in Autism Awareness training, The third eldest has just started self-employment (age 17) using his manual & mechanical skills and my youngest is an IT whizz and sound technician. None; so far, have ever been in trouble and all have a bright future ahead of them, but only with the right support behind them. The problem is their is a limit to ones capacity to support them (Health permitting.) and little help from the adult social care network that appreeciates high functioning youngsters with their level of poor executive function etc.

Their will always be tough days and their lives are far from perfect in living with such profound difficulties and with so much support needed to get them through the average day, but they are able to make a positive contribution to society if given the right tools.

Modal; like you, I'm full of fear, (Every day!) but the older I get the more I realize that being who I am and having the awful experiences I've endured in my life has made me all the more determined to ensure my kids don't suffer the same fate as me.

It was only once I'd experienced my own profound lows that I found the tools to help my own sons. I'm sure you too will find the strength to reassure your sons and that your experiences will serve as a valuable lesson to help them.

It's often because of such adversity and difficulties that we end up having to think outside the box and embarking on the road less travelled.

Give yourself time to heal. Make time for you and your family and be kind to yourself. Take each day at a time and things will not become so overwhelming.

Mindfulness is not about making things change, it's about making us more aware of how we feel and learning to accept it rather than reproach ourselves all the time. You are where you need to be right now, but you won't always be their. Things do change, But in my experience it's truely facilitated by acceptance.

Sarah Hendrix has done a few videos of late focused on 'Health and Wellbeing and she's done a video for GAP (Good Autism Practice.)

www.youtube.com/watch

Also she has done one on anxiety.

'How anxiety affects everything.'

www.youtube.com/watch

As a late diagnosed adult, caring for children on the Spectrum, I too have come to realize that Happiness and wellbeing have a part to play in our lives. Our difficultes are profound and cannot be ignored, but we are more than just a diagnosis. And If I' (with all my faults and the profound traumas in life) am able to contibute, even on the smallest level in helping others, then my experiences have not all been in vain.

You will have tough days, but let's face it, so does everyone. Take Care

Coogybear