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Supporting our son

Onceina Bluemoon

Hello 

We wonder if anyone can help .

We are really proud of our lovely son , who is 26 and really enjoys doing BTEC art and design at his local college , where his tutors are very supportive . He has multiple issues , though , which he really struggles with at home and outside college . We are definitely making progress - he even let me use the "a" word yesterday ! ( one of his issues is that he struggles with accepting a diagnosis of aspergers ) . He communicates much better with me now ( I am Leaf's mum) and told me yesterday that he feels angry most of the time , & I said that must be so horrible! He has really great NAS workers who take him out & he enjoys playing squash with Sean . However , our main worry is that he just can't cope in his flat at home and simultaneously with college too . Leafy's flat is really chaotic & he struggles with self care and keepi his flat clean & tidy .Last year , his social worker had to move him into an adjacent flat to have it deep cleaned , & by Christmas , it was very dirty again . Leaf just seems to get overwhelmed very quickly & feels very embarrassed when we suggest he might find a cleaner useful . His social worker is considering suggesting supported living , which we( Leafy 's family ) think might be a good idea . But Leaf feels very secure in his flat & it is very important to him . 

Any suggestions at all about how we can move forward whilst helping Leaf feel respected & for him not to feel that he has failed in some way would be really helpful .

many thanks 

Sky ( Bristol)

Parents

  • Hi Trainspotter

    Thank you so very much for your very helpful suggestions & insights into why our son finds it so hard to organise things around him . Reading your  explaination of how you experience things has really helped . I think that I am mildly on the spectrum too ( my husband Brian says I definitely am ! ) & I think that the second law of thermodynamics is absolutely true . I get very flustered and agitated when things get a bit untidy because I find it very confusing and tiring to put things into reverse . I think that this is definitely how Leaf experiences things - X ten . 

    Helping me to understand that tidying up presents an almost infinite variety of distractions is really helpful too . It feels like every individual object has the ability to command attention so that it is impossible to be able to see an overview of what you need to do & this contributes to an overwhelming sense of confusion. 

    I think that your point that Leaf is very attached to the things that he owns and these things are very important to him is very true. When I read your explanation , it was like " Ahh yes - Of course !! " Being casually told that something important to you is " rubbish " is disrespectful , & is a loss of control over what belongs to you . Leaf's social worker is lovely & the NAS team from Cardiff are helpful& understanding , but I wonder sometimes if some of the things that you have explained to me have been overlooked . You have given me some ideas about how I can explore the best way to help Leaf with these issues & to discuss some of these insights and possible approaches with Rod ( Leaf's social worker) . I do wish more professional were  trained in how to support people who are neuro diverse .

    Allocating a set amount of time each day is a great idea . And keeping this to an amount that Leaf feels able to cope with is a good one too . It's also helpful to understand that this is absolutely part of Leaf's fundamental make -up & very much part of being neuro diverse . I think that your suggestion of putting things into themed boxes which must be easy for Leaf to access is really helpful too . Unfortunately , after the deep clean last year , everything was put into large cardboard boxes , in no particular order & stacked against the wall . This has caused Leaf considerable distress , as he doesn't know where things which are important to him are , & so he has needed to pull things out of the boxes in order to find the implement he needs ( Leaf really likes making intricate anime models ) .

    It's also helpful to learn that you find living in a flat difficult . Leaf loves collecting things , and like you have described , this makes living in a small flat very challenging for him . Leaf likes to collect very specific things ; pens & anime models ( of which he has a lot ! ) I think that is exactly what happens ; he gets so engrossed in doing something , that he just forgets to put things away . At the moment , he is building a dolls house . It is 33cm square . 

    Concentrating on one activity , such as cleaning the fridge is a really good one , as is having a menu for each day . Until recently , Leaf ate the same thing every day for breakfast at college . Also shopping frequently & on the same days is good too . 

     Another great suggestion is keeping crockery & cutlery to a minimum , so that it is not possible for things to build up .

    Thank you so much for sharing your insights & experiences . I absolutely agree ; being neuro diverse is not a problem & absolutely nothing to feel ashamed about .If other people don't understand or cannot accept this , then it is absolutely their problem . If it weren't for wonderful people like Alan Turin and Dirac , the word would be a much more impoverished place - & I would not be able to talk with you on this forum!

    many. many thanks 

    Onceina

Reply

  • Hi Trainspotter

    Thank you so very much for your very helpful suggestions & insights into why our son finds it so hard to organise things around him . Reading your  explaination of how you experience things has really helped . I think that I am mildly on the spectrum too ( my husband Brian says I definitely am ! ) & I think that the second law of thermodynamics is absolutely true . I get very flustered and agitated when things get a bit untidy because I find it very confusing and tiring to put things into reverse . I think that this is definitely how Leaf experiences things - X ten . 

    Helping me to understand that tidying up presents an almost infinite variety of distractions is really helpful too . It feels like every individual object has the ability to command attention so that it is impossible to be able to see an overview of what you need to do & this contributes to an overwhelming sense of confusion. 

    I think that your point that Leaf is very attached to the things that he owns and these things are very important to him is very true. When I read your explanation , it was like " Ahh yes - Of course !! " Being casually told that something important to you is " rubbish " is disrespectful , & is a loss of control over what belongs to you . Leaf's social worker is lovely & the NAS team from Cardiff are helpful& understanding , but I wonder sometimes if some of the things that you have explained to me have been overlooked . You have given me some ideas about how I can explore the best way to help Leaf with these issues & to discuss some of these insights and possible approaches with Rod ( Leaf's social worker) . I do wish more professional were  trained in how to support people who are neuro diverse .

    Allocating a set amount of time each day is a great idea . And keeping this to an amount that Leaf feels able to cope with is a good one too . It's also helpful to understand that this is absolutely part of Leaf's fundamental make -up & very much part of being neuro diverse . I think that your suggestion of putting things into themed boxes which must be easy for Leaf to access is really helpful too . Unfortunately , after the deep clean last year , everything was put into large cardboard boxes , in no particular order & stacked against the wall . This has caused Leaf considerable distress , as he doesn't know where things which are important to him are , & so he has needed to pull things out of the boxes in order to find the implement he needs ( Leaf really likes making intricate anime models ) .

    It's also helpful to learn that you find living in a flat difficult . Leaf loves collecting things , and like you have described , this makes living in a small flat very challenging for him . Leaf likes to collect very specific things ; pens & anime models ( of which he has a lot ! ) I think that is exactly what happens ; he gets so engrossed in doing something , that he just forgets to put things away . At the moment , he is building a dolls house . It is 33cm square . 

    Concentrating on one activity , such as cleaning the fridge is a really good one , as is having a menu for each day . Until recently , Leaf ate the same thing every day for breakfast at college . Also shopping frequently & on the same days is good too . 

     Another great suggestion is keeping crockery & cutlery to a minimum , so that it is not possible for things to build up .

    Thank you so much for sharing your insights & experiences . I absolutely agree ; being neuro diverse is not a problem & absolutely nothing to feel ashamed about .If other people don't understand or cannot accept this , then it is absolutely their problem . If it weren't for wonderful people like Alan Turin and Dirac , the word would be a much more impoverished place - & I would not be able to talk with you on this forum!

    many. many thanks 

    Onceina

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