I'm well and truely hacked off

[bramblebrae]

Honestly I'm gonna write this down cause if I don't I'll be on the phone screaming at a ladies answer machine who I don't even know...right where to begin

 

My son WAS eager to go to a free football training course during the holidays at about the same time we were looking into this I got a surprise call from a family support worker who had been given our name by the local SS children with disabilities team, I had asked them to assess S so he could get funding to attend the funclubs for disabled kids or a specific jigsaw club for ASD kids about 2 years ago they couldn't do the assessment then but visted briefly and basically said if he attended a mainstream school then he should attend mainstream activities. With support from the clinical pschologist who ran our earlybird course I argued that he had 121 help in school even if it was mainstream so they said at that point maybe a support worker to help him at activities could be funded. Anyway we never did get around to arranging anything so at last this lady phones about visiting and giving him a proper assessment just before the holidays. It has been all a bit last minute but she said she would arrange someone to support him at the football which is only an hour for 5 days so not much funding wise really. Anyway we were away on holidays and before we left FSW said she had talked to the lady cordinator who arranged the support workers and that she(the coordinator) should be in touch with us after our holidays with the details sayign stuff like he should meet the support worker before the football training happens so we could both get to know him/her. Back from holidays last Friday I waited for the phone call..Wednesday came I thought eek I better phone coordinator didn't even know our names she had vague details about a little boy and football, our support worker (now on her holidays) was supposed to have emailed the exact details to her but she hadn't got them- anyway not to worry she says I'll phone you tomorrow once I've got the support workers name and if there's time we'll come see you on Friday or perhaps meet on monday before football a little early so S and support worker got a chance to meet. Well I had to be out yesterday and told her to leave a message and I'd get back to her got home at 6pm no phone calls at all tried a few times today to phone her and all I get is the answering machine ..I left a message on said answering machine and no one has phoned back...on top of all this for the past week S says he dosen't want to go to the football at all now as he thinks he'll be rubbish...now the truth is he isn't very good mainly because he keeps picking the ball up and telling the other boys how to play but it's the only sport he's ever been enthusiastic about at all and with every activity its the same he never wants to go at the last minute. We had a summer club arranged earlier in the summer and he only went once then even though he enjoyed that day he couldn't be bothered going again and I don't mind (well I do actually lol) force dressing him for school but I'm not doing it for activities...the whole point of getting the assessment was because we are isolated it's my fault too cause I'd much rather stay in than go out and deal with strangers..I'm not gonna self diagnose completely but I definetly have AS traits as far as social gatherings are concerned and I am very long winded lol Thing is I'm tempted to just phone up at this point and tell her to shove her support worker where the sun don't shine cause he dosen't want to go now anyway...if it was all arranged already I would be more motivated to push S into going I've alreay backed down to the point of saying just to give it a try on the first maybe second day and if he really hates it he won't have to go back.

The annoying thing with all these activities is yeah sure go to mainstream but the summer club we had arranged had a day out trip once a week and for S to go they wanted me to come too and I really think thats unfair on us both I don't know these people or want too get to know them that well and would've felt totally awkward on the trip and felt like I was being critised as if someone so looks at me I get paranoid so with my lack of enthusiasm combined with S's lack of enthusiasm he never goes anywhere except the cinema(I still have to push him a bit but at least I'm enthusiastic about going there most of the time) which we both enjoy thankfully.

I feel like we've waited 2 years had 4 home visits (loathed them) from this family support worker I've answered a zillion questions and all for blinking nowt in the end!! I think we should just stay hermits but at the end of the day I want to do the right thing and S does actually say at this point anyway that he wants to make friends with folk his own age and that he just can't be bothered putting any effort into it.

 

anyway thanks for the space to ramble on

Lorraine

[mum22boys]

Sorry things are going so bad for you <'>

 

It does seem so very unfair that your son is expected to attend a playscheme that other kids his age are able to go to but he can't go to a special needs one which he probably needs. It just shows how it is a total lottery with what area you live in as to what help you get.

 

In our area we have long waits for assessment, CAMHS are useless, and no support for M's behavioural problems yet he goes to a special needs playscheme. He attends a mainsream school but that makes no difference to his being accepted on a play scheme for kids with a variety of special needs. M would never be able to go to a 'normal' playscheme, not even if he had 1-1. he attends this playscheme which is run by our council but is also a reg charity and he loves it. He has 1-1 support and it cost me just ?5 a day. Yes, we are lucky but it is a shame all other services are not as good.

 

I think it is totally unfair for your son to be expected to attend a 'normal' playscheme and not even have the chance to go to a special needs one.

 

I hope the next few weeks of the holiday are not too bad. i know how stressful it can get.

 

mum22boys

[Guest hallyscomet]

Hi Brambelbrae

 

I know a lot of us have had the same frustrations regarding sport. Over in Aussie they expected my son to play with mainstream; we tried but he always became isolated and had trouble applying himself, like getting in there and kicking the ball. One coach basically said out right we dont have a team for your son. This was when he was only 8 years old, I could have had this mans guts for garters I was so furious.

 

So I tried my son at Taekwondo he had troubles here as he didnt want to kick the kids he was afraid of hurting them. They basically were laughing at him.

 

With basketball he would run up and down the outside but never run in to the group to attack to catch the ball, the coach politely pointed out how my son was doing this and didnt think he was managing with the team. But my son loves basketball, so I erected a huge one on the front of the house and he continued to spend most of his time just shooting hoops, and frustrated we couldnt find a team that would take him.

 

We next tried swimming but the school decided to do an all day lifesaving program in the strong Aussie sun with no cover, my son forgot to take suntan lotion and was too shy to ask for some, and came home like a lobster and sore for days, this put him offgoing to the beach altogether which is 2 minutes away. We used to enjoy going for an afternoon walk along the beach before dinner and this put him off going to this too. He was afraid of bumping into his surfie friends from school who were totally full of themselves and apparently teased him that day at the beach for not being able to surf.

 

My mistake, I gave up, I wish I just kept persisting, but it often would result in meltdowns, so I backed off and allowed him to become a computer nerd. but he is happy, and has made some wonderful friends who are also computer nerds.

 

Just letting you know, you are not alone here, feeling frustrated, people are cruel.

 

I will just add, I have been advised ASD children do have trouble at team sports. They are better in activities where they are competing but against their personal best, in sports like, little athletics, swimming, golf, to name a few, hopefully someone will advise of other sports they have had success with.

 

As frustrating as it is I would wait for the support workers help, she may have some ideas that are really helpful.

 

Take care <'>

 

H.

Edited August 5, 2006 by hallyscomet

[pumpkinpie]

I think this is bordering on the incompetent.They really are not sdoing their job are they. i WOULD WRITE TO THE PERSON CONCERNED WITH A COPY TO HER LINE MANAGER saying this has been going on for 2 years etc a,d wait and see, they cant ignore complaints letters can they. This way you have written evidence to take further.

[bramblebrae]

I think this is bordering on the incompetent.They really are not sdoing their job are they. i WOULD WRITE TO THE PERSON CONCERNED WITH A COPY TO HER LINE MANAGER saying this has been going on for 2 years etc a,d wait and see, they cant ignore complaints letters can they. This way you have written evidence to take further.

 

Totally agree pumpkinpie thing is I always try to give people benefit of the doubt ie I think of all the excuses they are gonna come out with FSW will say she sent email to coordinator...then maybe this week coordinator took ill on the wednesday night and maybe thats why she's not been in touch I really don't know ...I'll have to wait and see if anyone contacts me on Monday morning. I think the FSW is back from her holiday on Monday so I'll maybe ring her and let her deal with it all...still don't know about making him go to it at all now as he's so adamant that even if I drag him there he's not doing it...thing is he says that about school most mornings then we get to the gate and he's usually fine...I do realise though the thought of doing something is sometimes worse than actually doing it cause I've often had to force myself into things which in the end turned out to be fine really...I'll just see what happens on monday though....just wanted to say thanks to you all for your knowledge and support, it's always appreciated <'>

 

take care

Lorraine