I can't do this anymore

[devientenigma]

I have had enough. This really can't go on. Before anyone says anything I will go to the docs tomorrow. My head is about to explode. I just don't know what to do anymore. Have very unsupportive professionals and those who are, are not being listened to. Don't know where to go from here.

Blimey. I wouldn't be happy with the school allowing that, unless it was some beginning part of a strategy with a view to moving on. Is there another SLD school locally? We had a choice of 2, one we looked at would have been hopeless for ds1, the one he's at is perfect (well as near as you can get).

I also discovered that SLD schools have different specialisations as well. For example ds1's is designated as being a place that deals with 'challenging behaviours' and that is one reason why he is doing well there (and would have struggled at the other place). I didn't know there was a difference though until after he started at his school.

No advice DE but just wanted you to know I've read. ((hugs)).

It must be very draining.. x

Hi FioFio and saintly,
He used to go to a school for physical disabilities. Although he still has issues with mobility and gross/fine motor he couldn't stay there as it was an mld school.
Since changing schools he has gone further and further downhill.
If it makes sense school are not honest with what they report. I realise they have to be positive, but this is extreme. School itself is another issue and rightly or wrongly I have been told by the behaviour team to just deal with what is going on at home.
If it helps school know he is under the behaviour team but acessed help from somewhere else for one of his extreme behaviours. They also failed to add his behaviour management plan to his statement and also didn't push any further when they couldn't prise him from my car along with being hit, to get him into school. I later found out they should of informed behaviour and at least the ed psyc.
There isn't another school in the authority. The school claims to be specialised in autism, however my son has diagnosed autistic traits. I have been told by the psyc he should have autistic methods of support in place for these traits. School are saying he hasn't got traits.
HTH and thanks ladies.(including OM)

Hi FioFio,
We do have a SW, however we have just had this one allocated to us and we have met her twice. So early days.
I think our last one couldn't cope with our family's needs and made an excuse to get out. When I was on about teeth brushing to her and the school, with my son having a heart condition, mentioned he is at risk of endochartits, which can be fatal. The reply by her was you don't die from not brushing your teeth and laughed. Then in the next meeting I took her the leaflet on dental work in children with heart conditions. After this I got a letter to say we were having a change in SW. We had this one for over 2 years.
Sorry for the ramble.

Hello deviantenigma - my son is 12 and functioning at about 2-2.5. I have to say that it sounds as if you have a glut of professionals involved but not much actual help - I really hope the new sw turns out better.
My son goes to mainstream out of school care (along with a few other childern with sn, inc quite challenging behaviour) but has support there - I just wondered if your authority had anything similar in place so that you could at least get some day time respite in holidays/after school etc if the play scheme wasn't suitable?

Hello DE - how are things with you today?

Hi marmoset,
The dr phoned today and is going to consult with the school doc RE medication.
The SW is coming out to meet the family next week, then has made a follow up appointment to review our care plan. The new OT still hasn't been in touch and am thinking about chasing this up.
When I read your post about your ds's developmental age, I thought you are in a similar position to us. Prognosis from a few profs dealing with him have aged him around 3 at 15 and hope to be able to negotiate with his behaviour then. I really don't know how you stay strong. You seem very positive.
I feel much better since the weekend, still a bit tearful but feeling much more positive with the outcome from the doc etc.
Thanks for thinking of me. This has lifted me that bit more. Thanks.

Hi DE - things really have got a lot better with my son in the last 18m in particular.He did go through a very withdrawn, thrawn stage for a while but has really come out of it since and that's been great but I know its a hard going phase.
Glad you've had a decent response from the doc - hope you get same from SW and OT.

iam so sorry you are having such a difficult time we or rather i did not relent to respite for my 16 year old autistic son until last year and to be honest i sill hate it when he goes but i know it is part of a process especially at his age when we have to start thinking what is going to happen in the future he really enjoys it which is the main thing he is very sociable for an autistic child which i know is not always the case he also sometimes likes cuddles etc he has no speech and can be very difficult at times you have to watch him like a hawk i have to bath him every morning clean his teeth he is toilet trained thank god but sometimes wets out of the blue he is 6 foot tall and in one of his moments could do me in if he wanted lol any way just wanted to offer any support i can

having just reread my post i think the phrase he is toilet trained thank god is a bit insensative ..he has only been for a few years that is what i meant and i know it is very difficult dealing with this aspect of life no offence or disrespect meant to anyone

Hi DE - hope you have a much better weekend. I was thinking about what you said about being able to negotiate with your ds as he gets older and I think that's absolutely right and mirrors my own experience. My ds has very limited speech but has stepped up a couple of gears over the last year in particular so that we can now have mini-conversations which i'm sure has stopped him feeling so frustrated. I think that like us, you'll have long plateaus between steps up in development?

lolaandned I'm sure no-one would take offence - successful toilet training after a long haul is an achievement and I'm sure no-one would begrudge you that.

Hello devientenigma, just wanted to come on and send you some slightly useless but very heartfelt sympathy. Your situation is vey hard, and I just bet you are up to here with it. (())

Good news that something is happening re. docs anyway, and my fingers are crossed for good outcomes for you.

xxRCB

Hi Devie, Havn't been on here for a while and just seen this. I'm glad you are feeling a bit better since the weekend and also hope your sw visit this week is a success and she's a good one!

You've got so much on your plate, I wish I could say something useful but I'm sending you big hugs xx

Thanks for that MGC. Was perking up until last night, when he's really kicked off bashing his head, throwing things around. Someone suggested showing my emotions in front of him and TBH I couldn't hold it in anymore so sat sobbing in front of him. Still took a while for him to stop but when he did he sat and watched TV.
Yeh I have had a change in SW, she seems nice but it is early days.
Another thing thats got me foaming today though is mu neice is also down syndrome, your classic, average, loving, what people conjure up when you mention down syndrome. Whole family are feeling so empathetic towards her mother as she is now up through the night massaging her back, for phlem. Something we have had to do since DS was born, only we say the secretions on his chest. Hardly ever has a cold unlike our DS having double pneumonia every year ending up hospitalized. etc etc.
Sorry if Iv'e rambled and just let me know if I sounded bitchy.
How are you anyway?

No not bitchy at all, that's just not fair. Are they not as sympathetic to you then? maybe you should make a point of letting them know that you do exactly the same and your poor DS still suffers terribly each year in hospital. That really sucks!!

I don't feel I can say anything at all to make you feel better, It's such a stressful situation, but you are a really caring mum and you're doing a great job!

Fine here thanks, still perservering with Therapeutic Listening, 2 weeks to go and that'll make 16. DD2 is improving though.

Hope things have perked up for you in the last couple of days
xx

Hi MGC,
Thanks for this. Starting to feel a lot better. The new SW seems good.
Also got to add my niece is my husbands sisters daughter. So in a way down to him to tell them.
Just done a new sensory profile on DS and starting again from there with a different OT.
Fingers crossed things might be taking a turn.
Glad to hear everythings going ok your side. What happens after the theraputic listening? Did you ever sort the visual processing? Is her tactile still going OK?
Sorry lots of questions.
Take care everyone and thanks.xx

Hello, Great that your new SW seems good, about time you had some decent support. Also good that you have a new OT who has already done a sensory profile. Do you know what's in store with the sensory diet yet? I really hope things are on the up for you now!!!

After therapeutic Listening there is a 3 month break to see what new skills she retains and also to give the brain a break too. After that, possibly another 3 month stint I'll just have to wait and see.

The Visual processing has improved with the Listening but not completely so I think we'll see at the next sensory assessment what needs sorting. The tactile sense is still fine, but when she's ill it does creep back a bit but never as bad as it used to be. Her noise sensitivity has been a nightmare this week, every time a baby even squeaks she kicks off, she has an ear infection in both ears at the moment so am really hoping it's that as this was going well too.

I heard today that DD2 has got into the local SN school, it's what I really wanted so am very happy but also sad. I've known DD2 has SN for a year now but this seems so definate. I think I might have been in denial about it all. I don't know, I'm half way through a large glass of red so I'm thinking about it too much now.

Anyway, I think from your last post you are starting to feel a bit better so I hope this is the case. Join me for a glass of wine!!! It is friday night after all! xxx

Hi MGC,
Sorry missed the glass of wine.
Like everyone ups and downs. No where near as down as i was.
I'm glad everything is going well. I know what you mean about being happy but sad. Hopefully if DD2 keeps on improving there will be a chance for inclusion elsewhere if thats what you want.
The OT had the sensory profile done to compare it with the last one as well as start afresh, I think we are going to start body brushing, the OT is torn between SPD and behavioural issues but I opened her eyes in conversation, I also highlighted in reports from the past that DS is tactile defensive e.g He hates paint,glue etc explores mark making equipment with his mouth!! made her think.
Yes the SW still seems helpful after a few visits.
So fingers crossed for us all.
Take care xx

Hi deviantenigma - just popping in to see how things are going.

Sorry if I'm being nosey but my ds had some sensory problems and here are a few things that were tried which have brought him to a much more tolerant point - not sure how many your OT has tried:

• rummaging for small toys in box of pasta/rice

-encouraging sand play (he finds this calming and even now, the school will take a bag of sand on school trips to have on standby in case he needs to be calmed/diverted - he'll sit and feel the sand)

• spreading chocolate mousse/jelly/shaving foam on paper like paint
• filling plastic gloves with gloop and tying them so that he could feel the gloop 'safely' through the glove.

Even now, he insists that there are no dirty plates or spilled food on the table when he eats but he can tolerate mud, paint and most things now.

Hi marmoset,
Things same as usual but coping better again, I just loose it every now and then.
Thanks for the advice. I have a list of things to do however I just can't get DS encouraged to do any. However me and DH have fun trying to engage him.
We have just done another sensory profile and basically starting afresh. School, homecare and carer have also done it, with lots of similarities. Although it has changed from the last time.
New problem arose the other night though, check out special needs bed thread, sorry can't do a link.
Anyway I hope you are all well also. Thanks for thinking of us.
Take care.

Dodgy beds - that's all you need. Hope that mystery gets sorted soon.

All ok here although being driven round bend by demands for the Wiggles DVD - the Christmas one. My ds has very eclectic tastes - he loves Van Morrison (good), Blackadder (good) and the Wiggles (bad).

Btw, he has never engaged with me in any activity - only with professionals. The only thing we can do together is bubble blowing for some reason. Oh well, better than nothing.