Hi
This is my 1st post, just joined.
My wife and I both act as carers for our 23 year old son that suffers from Autism, he has very little speech and has challenging behaviours and epilepsy too, he really needs 2 people to look after him , he is very strong willed and a big lad now which can cause problems if he wants to or not to do something. we get a few hours respite each day when he goes to daycare but at night he can be up till after 3am and constantly demands drinks (only Tea or pop) making us both very tired some days, in fact i lost my job because i was falling asleep and have nearly fell a sleep driving in the past.
We seem to be coping better with him now that i am not working, my wife has a elderly mother that recently broke her hip so she needs to help out there in the day time but at least i can get the house work done for her now days.
Anyway its nice to find a group that understands the problems, i am fed up of people that as soon as they know of his Autism ask “what is he good at” or people that don’t know him at all or his problems assume he is just misbehaving, he doesn’t understand danger at all , and will walk in front of cars and tap the bonnet , he can make a bolt for it too and we have just got his blue badge back after many emails to the blue badge team to explain why he needs it. Im sure many of you will have experience of these problems too, one tip that works sometimes for us with his compulsiveness to drink is a old fashion egg timer, we have one that runs for 15 mins and we put this on display and tell him that he can have a drink when the sand runs out, (if i get the chance i turn it over when he’s not watching). If he keeps drinking he ends up sick and often will wet his bed causing him to get up and then start again with the drinks.
Dont get me wrong we love him very much and want to keep him with us at home but some time its hard and i know at the back of my mind that one day we will not be able to cope, we are getting older now and he is a strong big lad (about 16 stone) so if he gets upset its look out!
Wow , i feel better just sharing that…
Anyway hello to all and its great to have a place to get things off my chest
best wishes to all
Paul
Hi Paul, welcome to the forum.
My son has SLD, he’s over 19 stone, now in supported living, as I’m now widowed with health issues. It’s really important that your son gets used to doing things without you, ready for when he has to move away from you.
When did your son and MIL last have a Needs Assessment from Social Services, and you and your wife, a Carers Assessment. Should be at least annually.
Are you getting any help from a Challenging Behaviour Team? Aware of NHS Continuing Healthcare?
Hi Paul,
another Paul here 
I’m sorry you’ve lost your job due to caring for your son it seems your employer should have been a bit more sympathetic 
. My wife has severe epilepsy and she has seizures or clusters of seizures most days. Epilepsy as you’ll know is a very unpredictable condition and in severe cases like my wife she needs full time care, I hope for your son his seizures are on reasonable control having said that I know it will be difficult for you and your wife and it’s especially hard to see someone you love suffer which i’m in the same situation with Lisa (my wife) . I take it you’ve had (if you in the uk) a full care needs and carers assessment done recently by your adult social care team, in our case we get 20 hours a week support which we have in the form of a direct payment, without this i’d have to give up work. I know your son has many other issues but if I can help just ask. Welcome to the forum Paul, I think people like you and your wife are true hero’s, the sad thing is that from the outside people wouldn’t understand or know what hard work it can be at times.
Paul
From Derby
Hello Paul
Want to welcome you to the forum.
My circumstances are different to yours as my lovely husband is in a nursing home because of strokes and vascular dementia.
However, I am sensitive to the pain you must feel as parents, in fact sensitive to the pain each one of us feels.
I’m certain many will be along with advice and to welcome you.
Hi Paul
I have a relative with Aspergers, and possibly other undiagnosed mental issues, and you are right it did get more difficult as he became a man, and a large one at that. There seems to be wealth of help advice for children on the Spectrum but much less for adults.
I understand only too well the difficulties in trying to get him to alter a habit or a routine, indeed we often think it’s impossible. Contrarily we can never tell why he suddenly changes one either
The ‘pop’ will be contributing to his excitability, his weight and his incontinence issues unfortunately. Better to swap to something with less bubbles and no sugar, if you can
My heart goes out to you, it’s a really exhausting condition to live with for all.
Kr
MrsA
Hi Paul,
Welcome to the forum.
I care for S, he is 27 and has autism, related LD and health issues.
Sleep deprivation is horrible. I feel for you. When S goes through a patch of poor sleep, it definitely affects my tolerance and ability to cope.
Re his excessive drinking, has he been tested for diabetes to rule it out? Diabetes can cause excessive thirst.
Would he drink with a straw to slow him down a bit? Your egg timer idea sounds a fab idea. We have ones at school where you can add or remove sand, so you could gradually increase the time between drinks.
Melly1
Good idea Melly.
Glad you responded. Can you help me remember…?
Is there some idea that the communication in autism can be like crossed wires in that Paul’s son realises there is something wrong but the words/behaviour that result are not the underlying problem. Like thirst might be getting crossed with feeling tired? Did I read this on here or get it from somewhere else? It was something about muddling up crying and sadness with tiredness, I think?
Just to say, on the drinking with a straw issue - IF that is possible, could you then consider one of those ‘fun’ straws? The convoluted twisty/bendy straws (made of plastic usually, ie, they are permanent not disposable). I say this because not only might it slow down the actual intake (takes longer to suck through them), but your son might find them ‘amusing’??
I guess ‘sippy cups’ are also slower maybe? Or even ‘drinking from the bottle’ - it’s just impossible to ‘gulp’ as much??
PS - although this is totally not ‘my field’, I too remember dimly reading at some point about ‘referred cues’ or whatever, where one ‘drive’ is actually ‘another one completely’ ??? Does that ring bells with any more folk too??
(It might have been in reference to dementia, where someone with dementia no longer differentiates between ‘needs’??)
Hi Jenny, not sure about,“referred cues.”
Mrs.A are you thinking of,“Interoception,” the eighth sense? (Sight, hearing, taste, smell, touch, vestibular, proprioception & interception?) Difficulties with this sense mean the individual struggles/ cannot interpret/ misinterpretes bodily sensations? This could be body temperature, needing to urinate, needing to o/b, needing to pass wind ot burp, hunger or thirst etc
There are lots of books about this.
Some OT’s specialise in sensory assessments, even if this isn’t the case with your son, a sensory assessment can be informative and helpful. Worth asking for a referral if he hasn’t had one recently. Make sure though the referral is clear in what it’s asking for, as not all OT’s specialise in this field.
Melly1
I only ‘invented’ the ‘referred cues’ to try and get across a simile to having ‘referred pain’, where we feel pain somewhere in the body but that bit of the body isn’t actually where the cause of the pain is, etc. So I thought that might be analogous to feeling a ‘need’ for something and identifying it as say ‘thirst’ but in fact it’s caused by something else, eg, feeling cold, or whatever.
I must say I’ve ever heard of interoception! (No reason why I should, as I say ASD is not my line at all) - it sounds fascinating (if problematical). I do think, though, that I might have come across what it is (even if not the term) somewhere along the line in hearing things about people with dementia who can’t distinguish one ‘need’ from another?? Or, indeed, that they have any need at all?
What’s vestibular sensation by the way - never heard of that one either (I’ve heard of proprioception as I can remember learning in biology about how we have ‘sensors’ in our body so we know where our body is or bits of it in relation to other bits of it etc - it’s why standing on one leg with your eyes closes is hard - we can only go by our proprioreceptors, as there are no visual cues any more) (well, that’s my understanding - I shall now go and look it up!)
Hello again,
Thanks for all the kind replies,
We have had a number of assessments and have been given a night a week respite and get a few hours a week respite now via direct payments but the one night he goes to respite he often will self harm ( bangs his head against walls or anything else, last week he head butted a door off its hinges!) so we spend most of the night worrying about what he’s up to. with the carers that take him out for a few hours , well the few hours often turns to 1 hour as Chris decides he wants to go home and gets very upset if they dont bring him back so although they get paid for a few hours are often its really a waste of time, we have time for a cuppa and he’s back.
we are finding that he is at his worst first thing in the morning, when he gets up he wants to go out and gets upset if he cant for some reason, its like his life depends on it, mind you thats the story for what ever he wants, well till he gets it. for example he can use a few words when it suits him like “bacon” then “egg”, “Onion rings”, so i cook them for him and instantly get “no want” but till its cooked its the end of the world to him without them.
we must throw out food to feed a army, later he will decide he wants something else and if we are lucky he will eat that, the best way we have to help with this is to cook he’s breakfast and then as soon as he is up take him out somewhere, maybe B&Q or a supermarket, he calms right down then and is happy, when we get home he will eat what we cooked for him, often cold but he enjoys it anyway.
regards his drinking, he only gets sugar fee none fizzy pop and decaf tea, we are sure its a comfort thing and since he doesn’t have any hobbies its something he can do with is hands, he has a few of those fancy straws and does like them , i think they encourage him to drink more if I’m honest. trying to get him to get to sleep is one of our biggest problems, a few years ago we started to see a doctor that is trying to help, that was funny , what would you expect if you where told to get him ready for bed and sitting on his bed BEFORE you give him this medication (its in a drink ) , well we thought it must act quickly then so got ready for a nice nights sleep, we got his medication ready, got him bathed and in his bed clothes sat on his bed, he quickly drank the medication and we waited… and waited… 4 hrs later while he was bouncing around his room on a spacehopper we came to the conclusion that its not going to have much effect!
well its 8:45 pm here now and hes gone to bed, hes asleep now but will he make it through the night, lets hope so, it does happen sometimes Hi.
Making the best of it now, we have just opened a nice box of chocolates that was for Christmas, but a night of sleep is Christmas come early!
off to make a nice cuppa now. Thanks again to all for the kind words
Paul
Paul - I cannot think of a better testimony to parental love than what you have just so vividly and painfully described.
I wish you as well as can possibly be - what a nightmare to cope with, day in day out day in day out day in day out.
Do you get ANY respite care at all? I know it’s like hen’s teeth alas.
Hi Paul,
just saw your UC thread and looked up your previous posts to refresh my memory. Perhaps the respite carers who take him out occasionally would be better taking him out first thing to walk around B&Q etc and then to a cafe for a cooked breakfast- that way he might stay out a bit longer.
Melly1
PS I recommend not using your full name on the forum, to protect your family’s privacy.