Published on 12, July, 2020
Hi, I'm the father of three kids, two are on the spectrum, the eldest is 14. My wife and I are struggling to find a way to support him in finding his way through increasing school pressure, adolescence and independance. Whilst he pushes for more freedom, he needs daily reminders to perform basic domestic tasks our ten year old picked up a long time ago. We swing from overseeing everything to putting it in his hands, neither approach sees much progress. He's hard on himself and we don't want to contribute to his lack of esteem, at the same time we know how important it is for him to stand on his own feet.
I'd welcome contact from anyone who recognises the dilema. We're tired and running out of new ideas.
A very merry xmas to you too Coogybear, & to those you love, Modal.
Merry Christmas Modal
Coogybear
Hi,
No one goes through tragic events unaffected and those of us with the innate desire to empathise will always feel the pain of others. To survive with a generosity of spirit intact is something to take pride in though Coogybear,. Learning not to estimate your own worth through how others perceive or treat you is a massive step that many people never achieve. Once you do, it's such a liberating step, but it takes faith in your own good intentions and self-worth. I no longer care what anyone thinks about me, other than those I love. I know I'm well meaning and that if people care to take the time to know me they will see that. I have a friend who never fails to be upset when someone treats them badly, however unpleasant a person that might be. Whereas the more you become confident in your own worth, the less you care about the views of people who command no respect through their behaviour or attitude. He's desperate to be liked by anyone he meets, whereas I don't wish to be liked by people who don't respect me, quite the reverse in fact.
Thank you for your kind words, It's nice to know when you are of some help.
To tell you the truth I've found some of the most profound or even simple solutions have come from strangers, rather than close friends and family. Odd that really.
Re: Adversity, I think I 've been both crushed and made. Sadly, not in equal quantities. Yet you hope that their is a lesson of some kind in every bad experience you endure.
People with ASD are often viewed as resiliant, personally I'm not sure that's always the case. It takes a strong individual not to be tainted by such tragedy, but as I'm not one of these, I can only conclude that my eternal optimism must stem from my childlike naivety. I always believe that others will treat me well, as I would them and so that's how I live my life.
For some reason, the sins of the father have a way of impacting on us, despite our best intentions. In my case, I can see why with the hereditory condition of ASD, however as a woman, I've also realized that we are way more vulnerable. Perhaps that's why so many more woman on the spectrum report they've experienced such a hard life.
When I was diagnosed, it all began to make sense. Up until that point I was at a loss to know why such things happened to me, now I realize, it's a relief of sorts. I have the missing part of the puzzle. It's not because I'm a usless human-being; as I believed, but because I struggle to read intent and deciffer meaning from the most basic of communications. I've found comfort in knowing that i'm not a poor example of a human and that despite my difficulties, I do have something to offer and I am of worth.
I've also relized, through research for my book, that ASD has a strong prevelence in both my parents family histories. My mother; God rest her, neglected me in my infancy and for years i couldn't understand why. Knowing what I know now, allows me to make peace with that childhood. It wasn't a deliberate callous act on her part, but a genetic condition she had no control over. She needed someone to care for her, not the other way around. She was highly intelegent, but could not manage daily living, a vulnerable woman herself. (Just like my sons) Back then, we knew less about ASD so she must have felt much the same as me growing up. Again with my father. Deeply shy or so everyone thought, but tortured by fear in everyday living.
Having suffered such dreadful self-esteem issues myself, it gives me great insight into my sons potential world. I work hard to ensure my boys know they are loved and to teach them as many life skills as they can manage, to help them toward independant living. As you can imagine I had no such support myself. If I could do anything more for my boys, it would be to try and drive their self worth home and to help them realize their individual gifts.
I guess understanding the reasons for my parents failings has made forgiveness easier. Sadly, if the understanding of a parents failing by a child ever comes, it's often with the benefit of ones own life experiences and never in your youth, which leads to years of reproach.
Depression is a difficult dog. Still very much misunderstood and sadly still very much a taboo in some social circles. As with most things, few of us truely understand unless we are touched by it through someone we know or experience it ourselves.
Far from being a condition that should be ignored or kept under wraps, I think it is a very real indicator of the limits of humankind and should be listened to and acknowledged; both by the person suffering and those around them. Like the eczema that flairs up when we are stressed, we should learn to make it our friend.
Just as eczema is an outward display of internalised stress, so too is depression in my view. Perhaps too often in our modern lives we go down the course of putting cream on the symptom with no consderation to the cause? Just as with eczema, the symptom is never truely addressed, because we fail to remedy the stress that caused it in the first place. Putting cream on the skin rarely helps for long and in my experience you normally endure other unexpected side effects.
Coming to terms with my depression; or at least making it my friend, has meant confronting the cause. Not an easy journey. Actually, often really quite painful. Having confronted the cause and accepted my situation, I'm now working on trying to prevent those stresses from reoccuring in my life. I cannot say my dark days are over, and doubt and fear is always ever present in my life, but I will endevour to challenge them in a different way in the future.
I've spent half my life in the dark wondering why, and now I know why, I want to live the other half of my life differently. I've defined my worth, by others treatment of me, when I should have realized I deserved better. I no longer want to be vulnerable and a target to those of ill intent or of societies pressures. I need to do things at my pace and with regard to my well being. It's a tall order, and as with many that fear change, it's difficult to stop following the well rehersed mental patterns of behaviour i've lived with for so long, but I'm done with the cream remedy.
If I could offer any advice, it would be to make friends with your dog.
You are very lucky to have such a supportive and generous spirit in your wife. Do cherish that. All too often, when things get bleak, we mourn what partners don't possess, rather than celebrate what they do.
Before I sign off, I need to make it clear that i'm in no way professionally qualified in Psychology, Autism or any other field. I'm just a simple mum reflecting on life through my eyes and observations. I hope some of my ramblings are of use and thank you for your relections on lifes journey. It's always a comfort to know you are not alone.
Take care and do call out to the community anytime. They are a great support network.
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.'
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
Hi Googybear - just to say I'll have the space & time to reply with the thought I'd like to give it after tomorrow, take care in the meantime. Modal
Hi Yorkshirelass, many thanks for taking the time to talk. I think joining the forum is our first step toward us looking for outside support, we have all the details, but up till now it's felt like something else to find the time to do together. Can't leave the brood on their own, but can take a more proactive approach to getting those that should to step in long enough to enable councilling or group stuff 'cos I'm sure we'd find it helpful. As you may have encountered, it's hard to have to ask "close" family for an hour off if they seem at times willfully oblivious.
I wish you all the very best with the journey! Modal.
Hi
Just been reading through the thread - Coogy, glad you're back!
We have a similar situ to you guys - 14 year old (daughter) just diagnosed (mild on the spectrum, but anxiety a big issue) and we are exhausted but plod on daily......! Some days are great and others are duvet days!!
My husband and I, had two, one hour sessions of counselling (family therapy- we just left the kids behind!) just to give us time and space to breathe and express our feelings and fears, with someone who would just listen - it was a real help! Friends tend to listen for a while, then get bored & family help is very limited - this forum is a life-saver also.
Our daughter's special needs dept(mainstream) have just set up a termly group so parents can meet over a cuppa - again, it helps with isolation and you can help others as well as bounce ideas back- we don't feel so alone.
All the very best x
Hi Coogybear - Where to start! I remember feeling far more centred many years back, accutely aware of an inner strenghth that felt inate and far more accessible than at present. On one level I feel far removed from then, and wonder whether the long-term antidepressants have removed both the extremes of anxiety and the abilility to truely be in the moment. I've certainly made a conscious decision to prioritise a degree of equilibrium over personal exploration of who I might be minus the pills. Until my kids are able to fend for themselves it seems too risky to rock the serotonin boat for my own ends. On the other hand the lack of dramatic highs and lows allows me to hold down a job and stay vaguely in the room most of the time.
It feels as if I have no reserves of energy to do anything more than rest when I don't have to be working or parenting. I think my wife feels much the same, the odd family holiday takes on massive significance and is sole destroying when it proves as hard work as staying at home. We have no support network, no time to ourselves and no social life.
Despite how it might appear, I'm not bleak or pessimistic about life, but I do feel exhausted just trying to stay sane !
My sons heavy heart makes me fearful for his future peace of mind, and I'm certainly struggling to feel anything close to relaxed about it. I don't feel equipped to reassure him from where I am myself. He's involved in sports and outside school activities not just computer games, but I think the computer games he enjoys allow a degree of sociability online that he can't easily achieve elsewhere. With his social naivity, access to endless online perils from bullying to grooming and my own lack of computer savvy, it's not easy to know what to do for the best. Both sons have been bullied for being "different", and at one time my eldest was receiving bullying texts and phonecalls. I picture the front door as where any such nastiness should stop, so the idea it can invade our home without me even knowing is hard to contemplate. At which point I remind myself I need to loosen the reigns and I'm back where i started.
I realise I'm hard on myself, but I don't feel as if I have much choice. When either of us are ill , physically or mentally, the pressure on the other is overwhelming. So much so, it's all we can do to avoid resenting each other when one of us does switch off for a while. Relaxing shouldn't feel selfish, it can't be a good thing for either of us.
I feel as if I'm unloading a whole pile of angst in your direction, and for that I apologise.I guess it's rare for me to talk to someone who can relate. Take care and please know how much your time and generosity has been appreciated.
Ps.
Just a thought, but for your own well-being have you considered Mindfullness?
I've suffered with depression for most of my life and a couple of years ago it was quite deep.
I did finally have access to an excellent councellor who has truly helped, but she also introduced me to mindfulness and it's enabled me to recognise my stresses more easily and make them a little more manageable.
After all we often forget to take care of ourselves as parents, don't we.
Take care,
Hi Modal,
It sounds to me like you are doing a great job. Be kind to yourself.
I'm a late diagnosed ASD adult and my own worst critic when it comes to my kids, so I have some idea of how you feel. As parents of ASD children I believe we berate ourselves constantly and often it's not helpful. Sometimes I think that my understanding of my childs condition is that much more profound because I'm a sufferer myself. The advantage of this is being able to see the direction they are heading at times. The downside is that you often feel; with very real emotion, the level of their pain when they get it wrong. I've been their and brought the t-shirt so-to speak. The best advice I can give is to reassure him that it's ok to get it wrong.
Humour is also a great leveler. You may find this link helpful.
Take a deep breath and let the anxiety go.
I'm not sure what your sons favorite interests are, but it seems he has a flair (like many with ASD) for computers or gaming. It maybe that in his future he will come to have a career in that field, but for now he's learning his limits.
My sons both have night issues. One gets up and raids the fridge, the other has night terrors and a diagnosed sleep disorder. This makes mornings a real challenge and sleep deprivation a daily battle.
Now the latter is in the relms of the working world we have had to look at ways of adjusting to those difficulties. As he has also had problems finding work, he now works as self-employed. This allows him to choose his hours and manage his own time to reduce overload and meltdown.
I guess what I'm trying to say is that their is always a solution and opotunities will present themslves if you think outside the box.
Your son is a typical teenager in many ways. Pushing the boundries as most do, but he is also a teenager with ASD and that is always going to more challenging. My sons support worker calls it Teenage Plus!
NT's rarely understand the level of support needed to bring up and support an ASD child. It is a real roller coaster, but tommorrow is a new day and we get on with it.
Keep the faith and know that many parents like you are here with a good understanding of whats it's like to be a parent of a child with ASD and with many ideas to share on the various stages of life.
Thoughts and prayers to you and yours.
Good luck
I'm not so old I've forgotton what it was like to be a teenager! Perhaps I was just hoping he'd choose not to look after himself after he'd learnt how to, not before. Makes it twice as hard working out just what we're dealing with, and how to respond appropriately.
Cheers DCLane.
Can't tell you how good it feels to talk to someone who knows, and thank you so much for taking the time to reply.
I know we can't apply the same expectations to our kids as individuals, it was just trying to express the area we're most struggling with. He's a bright wonderful young man, whose handling a onslaught of hormones and homework with real courage. As I'm sure you recognise, the social and emotional hurdles are a different story.
With my own history of depression, I'm particularly aware of my sons isolation, struggle to socialise and boredom. The desire to help widen his horizons keeps coming up against his inability to do so with any boundaries in place. Playing computer games for example, if we try to set limits he'll find a way round them and fries his brain before noticing. The same applies to computer access, his phone and so on. If we watch over everything he does we don't give him a chance to do anything for himself. If we loosen the reigns he'll get up and plug in at any hour and is a mess come morning.
As I say, if we try to compromise, it involves boundaries which are as happily agreed as they are instantly abandoned. If any progress is made it's sometimes so slow as to seem static. I guess I'm just accutely aware he's only got a few years before he has to create and stick to boundaries himself, and it's my job to help him get there.
The falling at hurdles is endlessly challanging, as it seems he never really makes the same mistake twice, whilst making as similar a mistake as conceivably possible with no real perception of a link. Taking it as a personal failure is heartbreaking and so hard to dispel.
We're tremendously proud of him and tell him so daily, we'll never shut down on him, it's just a rollercoaster and I'm giddy as it is! Thanks again cooybear (& for the book link, I'll check it out), all the best to you and yours.
Can I just say, I so understand where you are coming from.
I have two sons with ASD, both of whom have similar challenges, but who are completley different personalities.
The only advice I can give, would be to accept his difference and from that point, take each day as it comes. He cannot be compared to his sibling as he is truly different.
I've just had the year from hell with my son in full time FE and it nearly tipped me over the edge, yet now he's finished full time FE, things have completely changed.
Educational pressures are huge on ASD youngsters as they move up the academic ladder and you cannot under estimate the impact they have. Couple that, with the adolescent, hormonal influence and peer pressure and it's a cocktail for confussion. Rest assured, things do get better when education ends, but it's a steep learning curve.
Boundries are essential, but you cannot be unreasonable. No grey areas and trust must be earned. Despite my youngsters protests that he can manage, it's clear that he can't in certain areas. You have to become adept in identifying what he's capable of and what he struggles with. Like the rest of us, he needs to be able to make mistakes in order to learn, but also he needs to be able to identify his strengths and weeknesses to know when to ask for help.
If he's accepting of his condition, he may benefit from reading a book be Valerie Gaus
www.amazon.co.uk/.../1606236342
This will help him identify his strengths, but also his weaknesses and hopfully enable him to feel he can seek advice for those areas. (Be advised this will take some considerable time longer than most NT's ( Neuro typical's) take to learn.
One of my sons sadly, is destined to be one of those that says he can do it all and falls at many hurdles. If he has the forgiveness of his parents, the trust and unconditional support of his family behind him; even when he fails, them hopefully he will realize that his failures are not a personal reflection on him as a person, but failures that many NT's also endure and that after a while he may realize the limit of his own capability.
Don't shut down on him for his first failure. Discuss it with him with reason and reflection and seek to asertain how he might do it differently in the future. He may get it wrong many times, but when he finally gets it right, it will be a triumph beyond words. And justifyibly so.
Your sons are unique and have the potential to achive great things. Be proud, celebrate their successes individually and enable them to use thier differences to a positive end.
Good luck, and feel free to ask here for help any time you need it.
Cooybear
Welcome - +1 to the daily tasks reminders for my 14yo boy. And no, I've no new ideas but would also welcome them!