How do you cope when thinking about the future?

[claw3]

I think i am usually a very strong person, but today driving back from dropping my son off, i just couldnt hold back the tears.

When a baby cries, my ds wants to hit them to make them stop.

He tries to walk out the front door with the maps he has drawn of his 'special places' and go and find them.

He is incontinent.

Kids call him 'weirdo', 'freak' and of course 'stinky'.

What on earth is going to happen to him when im no longer around, im finding it so upsetting.

Im off to keep myself busy and to stop thinking, i guess thats the answer.

Yes, I feel like this too sometimes Claw3 - when I have walked ds2 (asd/adhd) down to his 'special' bus and he's got and waved, etc, on my way back up the road, the reality of his differences always hit me and I feel like a good cry.

In some ways, I think it's part of the grieving process that goes hand in hand with a special needs child, worrying about the future is normal, particularly when the present can be so challenging.

It is heartbreaking really at times.

My older ds1 is having friends over this sat for his birthday (only a few) and I really hope that ds1's abiding memory is of a good time and not like his birthday (a few yrs ago) when his memory is one of his friends asking him "what's wrong with your brother". Of course, he didn't realise that there was something 'wrong', ds2 is ds2 iykwim.

I find the only way to 'manage' is to try and stay in the here and now - sometimes it isn't easy and it's ok to have a good cry x

I have no words of wisdom. It is very difficult to think about the future, especially when you are the person who knows him best. Giving him the best skills that you can is all I can suggest. And to remember that being different is not the same as being unhappy.

Claw 3 i really feel for you (think i said that to you yesterday as well regarding your poor wee cat) i sometimes torture myself thinking about what will happen to ds2 when we are no longer here. how old is you son ? ours is 16 he was incontinent until 8 but goes by himself now which makes a huge difference i never wanted him to go to respite but i agreed to it 2 years ago as i feel there has to be a start in the "getting away from us" process he only goes very occasionaly but i hate it i t is very sad when people name call etc and i really do sumpathise things can get a lot better Claw 3 my ds2 was really violent a couple of years ago but is not at all now i know it could kick off again at ant time but im just trying to say really CHIN UP have a good cry and carry on with this never ending journey xx(now Im crying)

Hi Claw3,

I've no words of wisdom either but i just wanted to say i have days when i feel like that about my son (he's ASD,almost 8,in mainstream with help)and the future,and i'm sure lots of us do. You're not alone ,not that its always a comfort i know.

I do voluntary work though and know other volunteers that help at day centers etc for adults with various disabilities and through this i have seen that theres a lot of very genuine caring people out there. I know no one will ever love my son and care for him like i do (thats what comes with being a Mum i guess) but it's given me a bit more faith in humanity if nothing else.

Keeping busy is my prefered method of getting through times when i'm upset too btw. Sending you a hug,take care, Jo x

Ive made myself a coffee, slapped myself round the face and pulled myself together now!

Yes Bodeniites, the poor cat, emotionally i dont think i can deal with having her put to sleep at the moment, although dp keeps telling me it would be one less thing to worry about.

I have recently been writing down my ds's problems and keeping a diary. Seeing it in black and white and reading it back, i guess i hadnt realised just how bad things were. I can cope with the name calling, the incontinence, its the not being able to seperate fantasy from reality i am finding upsetting.

Helen - Ds is 5.5 years old and is getting progressively worse or its becoming much more apparent as he gets older.

Huffy - At the moment he is blissfully unaware that he is different in any way. He actually refers to himself as weirdo and is quite proud of the fact that other kids call him this. He doesnt realise what weirdo means, he thinks it means cool.

I understand where you are coming from even though I know we are much luckier than most.

My DS1 has mild AS/dyspraxia. Maybe he will be able to lead a 'normal' life, maybe not. Other children think him weird and difficult to get along with and I think he is always going to be be a bit of an outcast and I do wonder if he will ever be able to fend for himself totally.

My particular concern, though, is that DS2 will end up feeling responsible for him when DH and I are gone. I don't want that - I just want them have a normal, equal relationship and I hate the idea that DS2 will have to take over the care of DS1. Probably DS2 won't mind, he has a good heart and he loves his brother, but I don't want him to feel obliged or to feel that he can't do what he wants because he has to be there for his brother. If he doesn't take on that responsibility though, I wonder if DS1 will have anybody else to help - I hate to think of him alone and unwanted by anybody else.

Niecie - Oh god, i hadnt even thought about the burden he could be on my two older sons. I really have opened a whole can of worms here. Sorry if i have upset anyone.

I was having a self pity moment. Yes i think thats the way forward, to think how lucky i am/he is in comparison to some and think postitive.

Now i am off to polish, hoover and wash anything that isnt nailed down and think happy thoughts!

Sorry for upsetting you too Boden x

Don't worry about it Claw.

As I say, I am in a much better position than many of you - I must admit to welling up but it was more in sympathy for you guys than for myself and my boys.

Perhaps we should be drawing comfort from the fact that our children have siblings, who whilst not us, at least care and can watch out for them.

The other thing is that hopefully there is time before we pop off and leave them and, if our children are still young, we don't really know how they are going to be as adults. Maybe things will turn out better than we hoped.

I really should do some housework too!

This is a never ending journey, as boden says.

I feel evry aware that no matter what I do, I will always ultiamtely let ds3 down when I die. DDs say we don't match their criteria for help (?? he'll have to go somewhere surely?) and whilst I know that at six I have years to fight for that, am always worried what would happen if I had an acident: dh and I struggling through is just about OK, Dh alone or even worse my parents with all 4 would be impossible without some respite input.

DS3 is a happy fella- people often look at me as if I am nuts when I say he has autism (until he speaks) but the truth is he just presents differently. He will always need some care- shared housing with care best possible outlook- and all I care about is that the happiness lasts. It didn't when they made us try MS (now in a SNU), and I fear for that. His TA said to me that whilst most people have their best years later on, for a SN child these are usually the best times now- so true, but then they are passing so very quickly.

Favoured approach? Ostrich in sand. Not terrribly useful am I?

Also have an AS / HFA son who in my heart I know will always need support at least (has associated disorders- agoraphobia, OCDs, eating disorders etc) and I do worrh that ds2 and ds4 will get left with both if I am not careful and I really don't want that to happen- autiosm has writen the story of their childhoods so far, don't want that to be eprmanent for them, but ds2 has a too big sense of duty IYKWIM

Oh ds1 is violent also- the 'milder' one (in '' signs because |I don't find him easier to say the least)- apaprently though he isnt actually violent because although he hurts all of us and knocks me out fairly often, accorsing to The Powers you can only be vuiiolent with a disability if you have a severe LD.

I have no words of wisdom either - I still wake up in the night worrying about this.
But I can tell you what I tell myself when that does happn.

I remember that these decisions get made over a long period of time. I could never imagine my DS2 as anything otherthan a tiny boy and yet here he is nearly a teenager.
And I used to worry about how violent he was and how he shrieked endlessly and how we could not go out and yet now he is the gentlest soul and a frequent flier

Before he regressed I had no notion that my life was fixed on a path otherthan two boys at school, exams, rugby matches, uni , empty nest syndrome. So how can I now even dream that I know how our lives will shape overthe next few decades?
I can stay awake at night and worry about the future or I can turn back to where we are and do my best accepting thatthe future will fuck itself up without any need for me to help

As for siblings - Ds1 is 16. We are persistent and determined in the way we explain to him that once we are gone his only responsibility is to find and support the best care he can for DS2. He is not DS2's parent and he has a responsibility to find his own way in life without sacrificing it for his brother. That will serve neither of them.That is the message we will give to DD too as soon as she starts to ask the question.
DS1 still has dreams of a house with a basement or loft for DS1 but I have assured him that his wife may not really be keen
Meantime we save as hard as we can and we seek out the best support we can.
Hopefully he will remain surrounded by others who have his interests at heart and they will find him a way to be happy.

But I won't regret his future just now. Not until I am sure I know what it is.

In the hope that I don't offend anyone, this is what helps me - it's a poem, and I know we dont do them on sn - it's not soppy or anything but it does help take the knots out of my stomach - some of you may already know it:

The Peace of Wild Things by Wendell Berry

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children's
lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the
great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still
water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am
free.

This poem goes everywhere with me x

That poem is very peacefull Helen!
I worry too, but my way of copeing is to keep an eye out (and a file) for suitable organisations (such as camphill), and specialised communities that may be able to support and care for ds once I am unable to. Ds is nearly 10 so we are far enough along the path to have a better idea of what his future needs might be. The fear is never very far away though.

I worry too, i know dd1 (as) will be fine but dd2 (ASD) i'm not so sure about. The other night it hit me that i am the only one who knows how to get dd2 ready for bed (the order to dress her in etc..) and it made me think 'what would happen if i was to die?', i am now going to write a list of how dd2 likes things done, what order to dress and undress her, how she likes her food, where she has to stand when we pick her sister up from school and all those silly things that have to be just right to make the day run smoothly.

Dd1 wants to have children and be a teacher when she grows up, i believe that despite her having Aspergers she will still achieve her goals.

Dd2 may struggle to ever get a job, she will struggle with communication and may never find that special someone to spend her life with.