Do you worry about the future?

[drowninginlaundry]

It's just that I have been thinking about this a lot to day after spending the morning with the tosser Ed Psych. We talked about possible future placements and developmental issues after I stupidly asked what he thought of DS1's progress or lack thereof. He pontificated how he has assessed and monitored over 500 autistic children over the past 15 years so apparently he was in a position to 'paint me a picture of the future' and apparently it 'helps if you are realistic with what you are dealing with' .

I am quite honestly shocked about his comments. He went on about sheltered accommodation and sheltered housing and how 'some' may be able to hold down a job such as stacking shelves in a supermarket because of their ability to 'show up on time' and 'perform matching tasks'. He said that in these sheltered communities, 'some' may form friendships, even relationships in which case 'you have to determine whether they should have children because it is an inherited condition'. And that we should then consider setting up a trust so as not to financially burden DS1's siblings. He then graciously thought of giving me a 'best case scenario' and went on to tell about a boy who is going to university, 'but this really depends on whether you get his education right from the outset'. Good, no pressure then.

I am upset by his speech, but I don't know what upsets me more - that a professional I am paying is such an obviously fascist wanker or that in 15 years' time this is the kind of life my son will have.

Leaving the issue re: fascist wanker, I am trying to figure out what I am feeling - sadness? Disappointment? Worry? He is only 4 1/2 but every time we see a professional, expectations are being scaled down. This time last year I was being told that 'in a years' time he will be having conversations with you'. He has very limited language (single words). In the tests today he was shown to have a severe language delay and he came out borderline low average/low ability in every test. Except one visual reasoning test (block puzzles), the only test where he understood what he was asked to do (no language element) and he scored higher than average for his age.

I am rambling, I know. But I worry what will happen to him when the education system kicks him out, who is going to look after him? What I have found so hard about this autism thing is the not knowing. Not knowing if he'll speak, not knowing how able he will be when he starts school, not knowing how he will cope with life. Because he is only 4 1/2. I just want him to have a good life. I don't know why I am feeling so sad.

I worry about the future too. We have no idea what it holds for us as we don't know what condition / syndrome DS2 has which makes it hard for anybody to predict anything (drs are usually negative though).

I worry about the impact all this will have on DS1. I don't want him to have to look after his brother for the rest of his life, after we are gone, or after we can't do it ourselves.

Nice story though...I asked DS1 the other day if he wanted another brother or sister, or if he was just happy with DS2.

He said to me that he wanted another brother, another DS2.

Brought tears to my eyes. He just sees DS2 for who he is, there is complete and utter love and acceptance there.

I just want them both to be able to do what they want (who knows I've been irresponsible, footloose and fancy-free for long enough), but ultimately I just want them to be happy.

I would be very suspicious of someone who claims he has the 'autism outcome' crystal ball - particularly if he claims it is linked to a particular educational intervention - is he trying to sell it to you? Underlying ability (which is extremely hard to gague at a young age) is the best indicator of a 'good outcome' for a child on the autistic spectrum. Also, I am very concerned about him taking on the role of 'determining' whether 'they' should have children. I know I keep relating everything to my HFA brother but he had little language at age 5 and is fine now. He also has a wife and child - without the permission of a psychologist ! As to the future, I try not to think too far ahead and just hope that in some way, 'the lord will provide'. I don't feel that differently about my NT son, in some ways I worry more about where his more 'normal' abilities will take him in life.

Drowning - it sounds like you hadthe same private EP as DS! The results of the tests showed much more severe cognitive difficulty than even I had suspected and as we were there, supporting with praise we couldn't blaim it on the unsuitable test methods!. That with gloomy peek into the future left me shocked too. I'm not suprised you are shocked and at only 4 your son is very young and it is a bit early for crystalball gazing as others have.
However the affect of this gloomy forcast on DH (who was still thinking in terms of catchup!) was useful. He has become much more realistic, supportive and invoved! We have been looking at supported communities/farms(ds loves plants), and are setting up a trust fund for Ds future. Ds is nearly 9, so we are further along the path, and I had already started to realise that for our child the future would be different.
Shiny - I feel for you - ds changed to SN school last Sept, and I had a major wobbly at the time worrieing if I had done the right thing! However we all have to do what we believe is in dcs best interest. Ds is happy in his new school - and he is thriving. I still have the odd niggle and wonder if I should have fought harder for proper support in MS ( or a split placement)- but mostly I wish I had done it sooner!!
Like you all I worry about ds future when we can no longer take care - or fight his corner for him.

DS is going to what I know is a really good special school and he has been going there for in-reach on a Monday for the past couple of terms so he's already familiar. But having supporting us through the process of getting DS's case sent to County Panel and him approved for special school, so many of the staff at the old school have since said they have reservations about DS being able to reach his potential and being at the "top end of the spectrum" educationally. And these are the TAs who have attended with him on in-reach days. This has confused me no end as all I've seen in the past year is the huge gulf between DS and his mainstream peers. To be told that he may not fit that well, educationally, into his new class is worrying. And the last thing I want to do is hold him back.

The same staff have mentioned in-reach back into his old school. Again I feel unqualifed to know if and when to push for this. It's impossible for me to compare his level of "ability" to other people's SN children who I don't do much more than catch sight of. And so many of them at the special school look much more able/less disabled than DS.. this is one of the things that made me question keeping DS is mainstream in the first place. I imagined people thinking "What IS this child doing in mainstream?!" something the SENCO admitted some of the other staff were thinking where he first started in YR... but whoi changed their minds when they realised how good his understanding was.

I also keep being told "DS needs something a bit more "middle of the road" really doesn't he.." So that'll be something which no longer exists then since they shut down so much specialist provision. I used to be such a champion for inclusion but now I see so much of it is just lip service to an unrealistic and largely ignored inclusion policy dreamt up by someone with their head in the clouds.

I suppose I jusst need to see how it goes.

Sorry for the ramble! And last night's one didn't even make sense! (Meant to say "A male TA had to put him on the bus in the end.. as the others were crying!!") So thanks for the comments.

Shiny - I hope all goes well! I worry about similar things (although I have the reasurance that ds is one of the less academically able children in his MLD school) I worry about the social exclusion by not mixing with MS kids in the village. We are trying to get him settled into cubs - (mum in the car park/ cub kitchen ready for action) but I dont know if it will work in the long term. ( At Beavers parents had to help so ds was like the others) What I mean is that I'm trying to find ways to fill in the gaps so to speak.

I don't think the Ed Psych should've talked in such detail about the future, it's really not in his job description. Not happy listening for you .

With respect to my own ds, he has SLD/non-verbal/ASD/ADHD, etc, etc! Lots of letters after his name!!! He is going to be a very big man. He is strong enough now at 5.5yrs old so I cannot imagine how he'll be when he's older and I'm trying to wrestle him onto the floor to change his nappy!!!

My hope for ds is that he will be able to live in supported accommodation with other similar adults. I would hope the environment is peaceful but with lots of sensory things for him to do and other activities. It seems that he has so far had brilliant carers/teachers at nursery/school and I am optimistic enough to believe that there are some fantastic, dedicated people out there who will be able to deal with my ds on a 1-1 basis when he is a SN adult.

My worry, as with others who have posted, pertains to the financing of his eventual placement. The thing I hold onto is that ds is very severe so he will not be able to live 'just anywhere'. I think the real thinking about what will happen in the future begins at around secondary school age....so some way off for us atm.

I worry about the future a lot for DS2-11 and his attachment disorder which for all the therapeutic parenting we have tried doesn't seem to be healing at all. He looks normal and is intelligent and talented, but still in infancy emotionally. He can be totally charming and people fall for him and his compulsive lies all the time. That said, as he is approaching adolescence, he is exhibiting more and more antisocial-type behaviour. Whilst we wait to get funding for intensive therapy for him, which likely will not happen anyway, he is getting older and bigger and stronger and I feel we are dependent on his medicine to keep him from showing even more violent tendencies. His lack of 'cause and effect' thinking means that he doesn't feel bad when he commits criminal-type acts against others. It is generally acknowledged that he may well develop Conduct Disorder as a teenager which may develop into Antisocial Personality Disorder or Borderline Personality Disorder as an adult. I don't think he's a killer or anything, but he would (already does) steal and commit other criminal acts. Without the help he needs, or even likely with it, I see a future of anti-psychotic medications and possible imprisonment. I fear for any future victims. Alternatively, he may become a type of psychopathic corporate or business mogul, who is just ruthless in his dealings.

Sorry Fio. She wasn't saying anything horrible about the school though; not at all - all three TAs who have attended with DS have said nice things actually and used to take turns at going with him on a Mon because they all wanted to go. It was just about DS specifically. And I wasn't saying that I think DS is "top end of the spectrum" - I have never known him to be at the top end of anything (except maybe birthweight!) - I don't think along those lines at all - anything he can do is a bonus and I don't expect him to do it well.

Shouldn't have rambled on here at all. Not a good idea. Was just feeling emotional because he's finished in mainstream and even though they weren't really able to accomodate him anymore, it has been a good school for him and we made lots of friends among the staff.

I seriously doubt DS is more academically able than your DD; you've only got to look at them to seee that. I wasn't suggested that for a second - was jsut stupidly quoting what the (probably stupid) TAs were saying because I have absolutely no idea what is riht or wrong for DS anymore and am just groping in the dark.

All I see to do is offend people on Mumsnet and I was a lot happier when I didn't come on it for all that time so I'm going back to that.

Sorry again. Please try to forget I mentioned it

Shiny - don't go! i don't think you've offended anyone. I know when we were considering moving my ds to his special school we were very worried about whether we were doing the right thing or whether we should be fighting harder to keep him in mainstream. This is bound to be a confusing time for you since your ds has actually had quite a positive experience in mainstream but I'm sure once he is settled in his new school you will find you've made the right decision. Good luck to you both - hope you don't aviod mumsnet!

Disgusted at the professionals comments,don`t dwell on it.
Says more about him than anything

I think the worst part is because your child does not respond in words it is sometimes harder to guage how much they are learning/understanding, I spend sometime each day doing the usual counting and colors even tough I am unsure if he understands