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mh70
Casual Contributor

knowing when to accept and when to push

Hi all. I've only just discovered this service and I'm so encouraged by the practical strategies recommended so far. 

We moved out of Sydney nearly 12 months ago to a semi rural area for many reasons including a better work/life balance and the promise of an extended family close by to support each other and especially our dad - who we had planned to enter aged care as I was no longer able to sustain caring for him in Sydney. Dad passed away on Xmas Eve and we are all sad/glad that his suffering is over and our dementia chapter - between our mum's early onset and dad's later diagnosis of Progressive Supranuclear Palsy which overlapped into 17 continuous years of watching parents suffer, is now over.

Our son has many beautiful traits and is 24 in April but probably the maturity of a 16/17 yr old. He has ADHD and High Functioning Autism and my husband and I are very concerned about him - not that our concern is new but his situation has deteriorated.  He's been unable to secure employment (fun fact: people with autism are least represented in employment compared to any other disability) and he is withdrawn, often low mood and his best mate says 'Meow'. His coping strategy is to eat food high in sugar and salt so he's put on heaps of weight which adds to his challenges. Oh and he only has online friends - I guess because he feels in control - he suffered terrible bullying in Yr.9 and we are lucky he is so resilient but he has actually lost faith in people and thinks our company is all he needs. This is worrying for obvious reasons. Our beloved dog of 15 years died on Saturday so his headspace is even more vulnerable atm. The good news is after a lot of convincing, our son started TAFE 2 days a week - Animal Studies Certificate 111, and has a reason to leave the house - his haven where he is a passive observer of life rather than an active participant. We live 5 minutes from the beach and he has absolutely no interest. We bought him a boxing bag which he wanted but doesn't use. Moved the exercise bike inside so he could watch TV at his request - hardly uses it. My husband has always coped by playing sport - which he continues to do and our son has no interest. I also am active but son won't join me. I have spoken to our son about our concerns and how much we love him and want him to be living his best life but it's actually very worrying and we're concerned about his future. He spends his lunch at TAFE alone because much of the class are girls and he thinks if he talks to them they'll think he's a creep. He has no social confidence and is living a very isolated life - not his best life and I wonder is it the best that he can do? We get confused that our son might see us wanting more for him as not accepting him so we try to have a good relationship with him as much as possible to keep him in a good headspace. He's so stubborn and restricted in his interests it drives us nuts. We wonder are we enabling his helplessness? One of my brothers suggested kicking him out - necessity being the mother of invention style into a group home. I vehmently disagree with this suggestion and actually haven't told my husband cos that will make him very angry toward my brother who has never had kids. Open to suggestions if you were able to get through my epic story. With thanks.

10 REPLIES 10

Re: knowing when to accept and when to push

Hi @mh70,

Welcome to the Forums. My name is FloatingFeather and I am one of the peer support workers at SANE. It is nice to have you with us and we appreciate you sharing part of your story with us. I know that that isn't always easy to post, particularly in the beginning.

Firstly I want to offer you my condolences and understanding around your parents illness' and sad passing. I can relate a little to what you have gone through as my father had early onset dementia which lasted for more than six years. He was in a nursing home and it was one of the most difficult times of our life. I do think that whilst many people were kind and sympathetic unless you have lived through this nobody can truly know how it feels.

It does sound like things have been very challenging you for quite sometime. I can only imagine as a mum to adult kids how hard it would be to want to look out for your son whilst also wanting to help him stand on his own. I totally understand what you mean when you opposed your brother's suggestion of letting your son move out and stand on his own feet. As a mum I would also totally push back on this idea for any of my children. Sometimes (in my opinion) some people have a lot of advice but little to no experience about what they talk about. Like with your parents situation, unless you really walked the road it can be impossible to know the challenges you have gone through and continue to go through.

It is really good to read that your son is attending TAFE - if one of his interests is animal welfare would he be open to working with animals (e.g. in a pet store or something similar)? My son (who is 20) works at a pet store which I find is beneficial for him from as animals are one of his passions and it is also social connection (a lot of people that are similar in age work at the pet store too). Are there other things your son particularly likes that he could engage in a work / study way? 

You sound like very loving and supporting parents - this parenting thing is very tough to navigate sometimes and having no real guidebook doesn't make it any better. I've learned to trust my instincts, really listen to what my kids are saying, and try to take what they are saying on board. 

I would also encourage you and your husband to reach out for your own support so that you have someone outside the family that you can talk with freely and honestly. I think having a safe space where you can unpack things just for you may be really beneficial. Do you have a GP, family member / trusted friend that you feel you could chat with around how you are feeling? If you are interested you might want to ask your GP about seeking counselling. GPs can give you a referral for 6-10 free counselling sessions if that is something that may interest you.

I wish you all the best. The Forums are 24/7 with many kind, supportive and understanding members so keep reaching out for support if you need to.

Warm wishes,

FloatingFeather

PS. Just a couple of Forum tips that may be off help:

Tip 1 - if you want to directly chat with someone on the Forums use the @ symbol and then start typing their name directly after it. A dropdown box should appear, and you then select their name. This ensures that they are notified of any posts you mention them in.

Tip 2 – the most recent posts are the latest page numbers.

Re: knowing when to accept and when to push

hi there @mh70, well done on reaching out to a new space. like @FloatingFeather said, there is no guidebook to parenting, but it's clear to me how much you care for your son. I can tell that you've tried quite a few things already

 

I thought I'd tag one of our Community Guides who is a parent (heya @Shaz51) and another parent @Determined to share anything parents to parents ❤️ 

Re: knowing when to accept and when to push

Hello and  welcome @mh70 

knowing when to accept and when to push is very tricky and trial 

and error 

sending you understanding hugs , i have lost my father and i have had to put my mum into aged care because of her physical problems and getting dementia 

Doctor said mum needed more assistance which was a hard decision to do 

i am a step mum to 4  children who are adults now , my husband has been diagnosed with lots of things including adhd

my step sons 2 and 3 have been diagnosed with ADHD when they were very young 

I think your son is still going and coping through all the changes he has had in the past year

 The good news is after a lot of convincing, our son started TAFE 2 days a week - Animal Studies Certificate 111, and has a reason to leave the house -- this is soo encouraging and if this is what he is happy with at the moment , let him 

my husband loves been at home on his computer and photography , he would retire tomorrow if he could 

i think you and your husband are doing wonderful 

what things does your son like 

here for you for a chat anytime @mh70 

 

I will tag @Smc , @Appleblossom , @Krishna , @greenpea 

hello @TuxedoCat , @FloatingFeather 

Re: knowing when to accept and when to push

Hi @Shaz51,

I just wanted to say I read a lot of your posts and responses to others. I think your support and posts are so kind - we are lucky to have you! 

Hope you and your family are well and the week ahead is a great one.

Big hugs,

FloatingFeather ❤️

Re: knowing when to accept and when to push

Hello @mh70 and welcome.

 

I can relate to a lot of what you posted especially

..."Our son has many beautiful traits and is 24 in April but probably the maturity of a 16/17 yr old. He has ADHD and High Functioning Autism "

 

I am also a mother and carer of a young adult male with high functioning autism and BP1.  I am a little skeptical of diagnoses and had a long history of studying them, but for brevity they can have a purpose.  I probably could be seen to have high functioning autism myself at least the doc who diagnosed my son though it possible, but not formally diagnosed myself.

 

Congrats on your high functioning son with beautiful traits. Mine is too.  Treasure the beauty and patience are probably the best advice I can give while working on internal  boundaries about levels of personal responsibility within the home. My son bought heaps of weights which he rarely uses, but he does get out and exercise and use the gym, but spends too much time online. Congrats to your son for doing TAFE. I spent a lot of my time at uni alone.  it is not always easy to get into new groups, so I spent a lot of time on the margins watching.  Tbh though he may have a good instinct about pushing himself on his classmates. 

 From that vantage he may have some luck creating a friendship etc ... but leaving ball solidly in their court.  Its early days yet.

 

You said "It is heartbreaking to watch them be isolated and not live their best life".  It is the kind of language I also use.  Best action is to dig deep for your own wisdom and not self blame.  Do due diligence, but being taken up socially actually requires action from outside your control.  As parents, we can facilitate only so much in playdates and parties etc.   True friendships are part of the magic of the universe.  I am modelling atm for my son, my best life, I am getting out and about more, and being clear about our separateness, but still loving him and checking in one him, and gently calling him out at times. I have been told by people in other cultures that it is fine for multi generations to live together and that my house would be fine for him to even live with a wife at the back of the house if he wanted.  There are not set rules really when it comes to family.  Love must be a guiding factor.

 

I have a neighbour who is boastful and well connected socially, and always going on about generalisation about nice and cute kids and things, but if bullying and exclusions start young, it is very hard to turn it around.  Yes that happened seriously with my son.  and yes, one problem bully was a teacher at the school's son so got away with stuff, whilst she whinged to me about her child's bad behaviour ... weary sigh ... but my son suffered, and now has little faith in people.  Its not as if I did not try. I went over and above again and again and put all my resources to his socialisation.  It is what it is.  

 

About the last points ...

"We wonder are we enabling his helplessness? One of my brothers suggested kicking him out - necessity being the mother of invention style into a group home. I vehmently disagree "

 

I have struggled with that a lot and been actively accused of "enabling helplessness" quite a few times, but in fact. I am independent, I value and encourage independence and I am now standing my ground on it.  Too many opinions like that have interfered with my ability to receive decent medical care as everyone jumps to the helicopter parent metaphor, but I have too many skills and interests of my own and generate that in my children, and am not buying it anymore.

 

Yep ... online friends can be limited.  One good thing my son has made a few friends in real life and at least online gaming is a way of connecting with REAL friends, with a range of similar interests.  My son really tried to battle his online addiction and was studying but Covid enforced online learning and cut out his uni and activity and friends and we have not recovered from that yet ... hmmm.

 

I have known a few people working in group homes and witnessed and heard a lot of stories from the inside.  Not sure they are the best place for High functioning autism types .... hmmmm.  It would not be satisfying socially and be a knock to their self esteem ... unless the system figures out something and can pop a few aspies together ... that might work ... 

 

Some people go on about tough love and throwing them out ... I have experimented with talking tough love to him, but given our family history of premature deaths I really do have to be careful.  I know what it is like on the streets and a lot do not make it, and maybe the tough love people can be covering for a lack in real love and compassion ...I am ok bugger the rest ... it all depends ... what is right for one is not right for another.

 

Good Luck with it all.  

 

 

 

Re: knowing when to accept and when to push

@TuxedoCat Thank you so much for your warm welcome and for matching me up with others who can understand. Appreciating your thoughtfulness and help. Thanks.

Re: knowing when to accept and when to push

@Shaz51 Thank you for your kind and encouraging response. I hope you and your family are having a good week too. My son loves fantasy and was a huge consumer of it during school - it's how he spent most lessons and lunchtimes as his emotional restorative and now....he writes fantasy - but only uses the notes app on his phone - his big hands get very sweaty and he has issues with slow motor coordination which impacts him - how he lost his last job doing quality control on berries. He is very ritualistic with motor tasks and it has cost him with employment, you should see him making a goyza where his OCD kicks in....I guess I'm not always as patient as I should be. I try to encourage him with his cooking, writing and ask if he would like to be matched up with someone who could mentor him and give him feedback but he's not interested to date. He loves his cat - and he loves screens - watching movie after movie, and gaming - especially ones with a story. He also loves music - listening to it anything from epic instrumentals, often used in movies or games to heavy metal - an eclectic taste. He loves Asian food too, now after many many years of chicken nuggets and my lasagne so I bought him RecipeTinEats for Christmas and we are slowly making our way together through, cooking some of the foods that he enjoys and trying to build his confidence. I'm reflecting upon your observations that he is likely still adjusting and I think there is wisdom in that as I know I am too. It's just easier for me because I have the distraction of work and my interests give me some surface social stuff. He's laughing his head off now as happy as larry - gaming with an online friend.

I've petitioned my husband to teach him how to cut the grass (single turn) and he's done part of the lawn twice now and he's very good at it, just very slow and meticulous. There's a pattern there and no employee has patience for it so I guess I'm conscious of that and lack patience and want to throw a firecracker under him to get him moving faster in everything he does. Mean mumma I am.

Re: knowing when to accept and when to push

@FloatingFeather Thank you for taking the time to read my rather long post and responding in such a positive and empathetic manner. I'm sorry to hear of your own sad chapter with your own father and I completely agree that it is the most difficult time watching their demise, their suffering and that final transition into care and the guilt!!!

 

I've been reflecting upon some the responses received and trying to take stock of what baby steps we are making. Part of the problem is our lack of patience and frustration. We find it very difficult to be optimistic and motivating. We do struggle to motivate ourselves to be healthy too its just that he is young and has his whole life ahead of him and whilst we are middle aged and now heavier we were both active and living far more actively than our son is. Especially with all the visits to nursing homes over 6 years between mum and dad it's so obvious that you need to make the most of each day and added to that, I play tennis with people in their 70s who would run rings around our son - it's like he's imprisoned himself in his own nursing home facility way too early. People would love to have his height, just over 6 feet 4 inches and he hides away, becoming very hunched over.....breaks our hearts. Sleeps much of the day away but I did make a medical appointment for him and asked him to investigate if he has sleep apnoea as he had a scary episode when he couldn't breathe one day recently (I think it was anxiety based but asked him to explore the possibility that coupled with his snoring he could have sleep apnoea which prevents oxygen getting through to your brain which could cause dementia if left unchecked...) Anyway I'm sure you think I'm a nut now but he went to the Dr and liked him so it was a win. The Dr gently told him he needs to lose some weight and has done bloods etc (that's another story for another time) so that is an achievement and a new beginning after no medical assessments in well over a year or 2.

 

In regard to your suggestion to investigate a job in a petshop - there's nothing like that available in the region where we live at present. I convinced him to apply as a volunteer for RSPCA before Xmas but he never heard back. When I looked more deeply into the positions that they wanted filled by volunteers, they wanted experienced people with landscaping, skills etc nothing related to animal handling etc.

E (our son) is very ritualistic with motor tasks and it has cost him with employment, you should see him making a goyza where his OCD kicks in....I guess I'm not always as patient as I should be. I try to encourage him with his cooking, writing and ask if he would like to be matched up with someone who could mentor him and give him feedback but he's not interested to date. He loves his cat - and he loves screens - watching movie after movie, and gaming - especially ones with a story. He also loves music - listening to it anything from epic instrumentals, often used in movies or games to heavy metal - an eclectic taste. He loves Asian food too, now after many many years of chicken nuggets and my lasagne so I bought him RecipeTinEats for Christmas and we are slowly making our way together through, cooking some of the foods that he enjoys and trying to build his confidence.He's laughing his head off now as happy as larry - gaming with an online friend.

I've petitioned my husband to teach him how to cut the grass (single turn) and he's done part of the lawn twice now and he's very good at it, just very slow and meticulous. There's a pattern there and no employee has patience for it so I guess I'm conscious of that and lack patience and want to throw a firecracker under him to get him moving faster in everything he does. Mean mumma I am.

In regard to counselling, I've dabbled in it intermittently mostly when I hit rock bottom and have been completely overwhelmed with the challenge of our son and either or both parents simultaneously. My husband is not open to it - he thinks nothing is going to change and we just have to accept our situation but I keep chipping away aiming for baby steps. I think it's my job as his mum to be ambitious for him- perhaps its just getting the tension right that is my roadblock with my lack of patience part of the obstacle. I hope you and your family are having a good week.

Re: knowing when to accept and when to push

@Appleblossom Thanks for taking the time to respond and share your story. Your son sounds like he has lots going for him with social connections, uni etc - I'm jealous and happy for you and him but not in a mean way if that makes sense. I just want my son to experience the fullness of life and he's not going to find it living at hm 24/7 although he does now leave home 2 days a week to go to TAFE thank goodness.

 

E (our son) is very ritualistic with motor tasks and it has cost him with employment, you should see him making a goyza where his OCD kicks in....I guess I'm not always as patient as I should be. I try to encourage him with his cooking, writing and ask if he would like to be matched up with someone who could mentor him and give him feedback but he's not interested to date. He dropped out of school in Yr.11 -couldn't cope with the workload and had zero interest. His processing speed and working memory are 6th and 8th percentile respectively so no wonder he found school hard in Yr. 11. Having said that he is at least of average intelligence, rational and articulate with a great vocabulary achieved from being a huge reader as a child - how he got through school. I taught him to read and love reading (his behaviours at schools would have seen him struggle without this support from home as he spent much of his early years underneath the tables and he really struggled with emotional regulation making him very difficult to teach). He loves his cat - and he loves screens - watching movie after movie, especially fantasy and gaming - especially ones with a story and shooting games which I loathe. He also loves music - listening to it anything from epic instrumentals, often used in movies or games to heavy metal - an eclectic taste. He loves Asian food too, now after many many years of chicken nuggets and my lasagne so I bought him RecipeTinEats for Christmas and we are slowly making our way together through, cooking some of the foods that he enjoys and trying to build his confidence.He's laughing his head off now as happy as larry - gaming with an online friend.

I've petitioned my husband to teach him how to cut the grass (single turn) and he's done part of the lawn twice now and he's very good at it, just very slow and meticulous. We live on a small acerage now which has added to his isolation.

 

There's a pattern there with his slow motor coordination and ritualistic behaviours and no employee has patience for it so far so I guess I'm conscious of that and lack patience too and want to throw a firecracker under him to get him moving faster in everything he does. He has a tendency to self sabotage everything and has always struggled with perseverance.  Mean mumma I am.

I know we just have to accept our situation but I keep chipping away aiming for baby steps. I think it's my job as his mum to be ambitious for him- perhaps its just getting the tension right that is my roadblock with my lack of patience part of the obstacle.

 

I hope you and your family are having a good week. Thank you for taking the time to read my rather long post and responding in such a positive and empathetic manner.

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