Fuck fuck and FUCKITYFUCKITYFUCK!!

[CouthyMowEatingBraiiiiinz]

Got 21mo DS3's Paed report done on his speech delay/regression and his allergies.

Here are a few excerpts : "disruptive" "his attention span fluctuates, if he is interested in a particular activity he can concentrate for far longer than is age appropriate but in general he is very easily distracted and generally keeps moving from one activity to another and from one part of the room to another"

"He shows eye contact and some interaction with parents but does not interact appropriately with unfamiliar faces or make eye contact. In fact he actively avoids eye contact with unfamiliar people"

"XXXX's speech is delayed; he can hardly say one or two words. This is a clear regression from his one year check with the HV"

"Height could not be measured as XXXX would not stand still"

"Schedule of growing skills could not be performed properly as he was constantly fidgety and restless and could not be engaged in any of the various activities that are part of the Schedule of growing skills"

And in summation : "Regarding XXXX's Hyperactivity, there are gross concerns. Presently he is too young for assessment regarding ADHD but this needs to be kept in mind and perhaps he will need further assessment if there are still concerns."

FUCKITYFUCKITYFUCK.

He has ASD and ADHD, doesn't he?

Isn't two out of four that are already dxd with ASD/HFA ENOUGH??!!

I so so so so so wanted to be wrong. I have never wanted to be wrong so much in my life. But I'm not wrong, am I?

I wasn't even there about the hyperactivity, hasn't told anyone medical because I knew he was too young to be assessed. We were there about the speech and the allergies.

And if it is that obvious to the Paed, who had no idea that I had those concerns, then it is bleeding obvious, isn't it?

Buggerbuggerbuggerbuggerbugger!

Plan if action?

1. Referral to CADU (Child Assessment and Development Unit) for assessment.
2. Referral to SALT - already have my first appointment despite the current 18mo waiting list (!)
3. Referral to Physio, in view of strong family history of Hypermobility, and although he is actively mobile and runs around, he can be very clumsy, as witnessed. 4) Section 332 notification has been made to Educational Psychologist 5) Blood investigations including Full Blood Count, urea electrolytes, Liver enzymes, Serum CK, Blood Glucose, Iron profile, Thyroid profile, Plasma amino acids and chromosome studies for Fragile X syndrome and Microarray. Urine will also be requested for amino acids and organic acids.
4. XXXX will be reviewed in the CADU.

Wtf is number 4? Not come across a 'section 332 notification to the EP' before. And why an EP at 21mo? Especially in an area where you can't get an EP visit for a 14yo, or a 9yo for bloody love nor money?! New one on me. Any explanations?

And as for number 5, the only one that makes sense to me is testing for Fragile X. Which will come back negative, same as DD's test for it, and DS2's test for it. Can anyone explain the reasoning behind the rest of the things they want to test his blood and pee for?

And just to hold my hand.

He had his anaphylaxis allergies fully dxd on Wed by skin prickly tests on Wed too. Then this report through the door today.

Skin prickly tests, he went into anaphylaxis. From the skin prick tests. To CMP. And Nuts. And 'moderately' reacts (I.e. bad but stops short of ana) to soy. He's so bad that the local Paed allergist is washing his hands of him after just one appointment and sending him to the Eveline in St.Thomas's in London.

Because another hospital added to the 8 I visit already every year, about 50 visits a year between 3 of us currently, was JUST what I needed, right?!

Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrgggggggggggggggggggggghhhhhhhhhhhhhh!!!!!!!!!

I wanted to be fucking WRONG this time.

14yo has multiple disabilities herself. HFA, Partial deafness, GDD, LD's, Dyspraxia, Hypermobility Syndrome, cardiac issues, mild epilepsy.

Plus she is very, um, oppisitional. If you ask her to do something, she might do, if you wait 2 days (even if it's urgent). If you tell her, or rush her in any way at all ever, she has a full on meltdown.

I can't get up a minute late on a school day, ever, or she just is out of kilter and has a 2-hr long meltdown where I end up having to dress her to get her to school on time.

Has always been this way, but the schools don't give a shit, because I GET her there.

Even at primary, I'd have to peel her fingers off every lamppost between here and school, because I'd invariably end up rushing her with two (at the time) toddlers to sort out.

But as far as school were and are concerned, I got her to school on time, she was ok once there, but they have never seen what it is like having to live with her.

Story of my life.

No money to pay even the DC's to do housework. I'm being threatened with having my gas cut off, I am haemorrhaging money, £150 a month more goes OUT of the house than I have coming in.

www.parentpartnership.org.uk/

Get a dla form filled in for yourself, for your dd, and private message me if you can, I will give you my phone number and talk you through the shitty forms if you like.

You are struggling more than you should be and it's not fucking fair.

We haven't had a parent partnership officer in our part of Essex for over 3 years. The other half of our town does, but she isn't allowed to help.

Used to get quite a bit of help from the old one until she left.

Thank you Colditz! I have someone from a Charity who is helping me with my own form, but she can't help with the DC's.

I am going to deal with DS3 first, as I think that's pretty clear cut, with a diagnosis of hyperactivity, possibly ADHD already at 21mo, PLUS his allergies. Then I am going to try yet again with DD, but that will probably be after Christmas. Two at once is enough to deal with.

Then after that I will try yet again for DS2.

I'm quite serious about the offer of phone help, by the way. If you would rather in rang you, I get free minutes on a contract and am happy to ring you.

However, I do also understand if you are unwilling to add even more social interaction into your life, as you are under quite enough strain as it is.

DS3 has decided that today is the day for trying to break the stereo. 100+ times I have had to remove him from the unit it is housed in. You would have thought the child lock would slow him down, but he can open the child lock quicker than I bleeding can!

Had enough by this time of night, but he is just getting started.

try putting some music on...maybe he isn't trying to break it!
sorry maybe that sounds wrong..it just occurred to me he may be trying to achieve something other than damage.
Sometimes my DS wants music playing loud...it drowns everything else out and seems to have a calming sort of help to him...1 focus point iykwim

God, I didn't think of that.

He LOVES music, it's one of the very few things that engages him, playing on his piano, or playing the guitar and drum Apps on my phone.

I should have bloody realised. I have enough siding experience with the older ones, but was forgetting how to apply that to a non verbal child. Seeing as DS2 has only been fully verbal for the last 4 years, since he was 5, you'd think I'd have a head start on that, and that it might have I cured to me.

Also, he has regressed with his speech, but we have had a bit if a communication development yesterday & today.

Due to his allergies, he is on a milk replacement formula. It is a powder that needs mixing with water.

As he wasn't reacting when I was telling him I had milk for him, I took to mixing it where he could hear me shaking it.

Yesterday and today, when he has wanted milk, he has raised his arm and shook his hand in the way I do when I am shaking his bottle.

Would this be good to encourage? Would it be a good idea to introduce some signing for communication? Or PECS? Or both?

He takes to misbehaving when he has a dirty nappy too. I wondered if there would be a more acceptable way for him to communicate his need for a nappy change to me? A particular sign? A picture?

The only 3 things that he engages with are music, crashing toy cars and building with his mega blocks.

Is there a way I can use his favourite things to teach him? I already count his cars, or the bricks he is building with, and tell him that he's building with a yellow brick, and this is a red brick etc, as it's the only times I get his attention.

Thing is with the music in the stereo, I have another one (DS2) that is hypersensitive, and I can only use the stereo when he is at school. So even if DS3 wanted it on, I couldn't have put it in, because DS2 was here.

When you have conflicting needs and issues, what do you do?

If DS2 needs the house to NOT have music on, and DS3 needs the house TO have music on, WTF should I do?!

couthy, duuno if I'm posting out of turn here or if all ideas are welcome (I consider us old friends after the nocturnal ramblings thread ) but in response to your last few posts I was wondering if an objects system would work. The upside of that is that it's very concrete and visual, the obv downside is that you pretty much need a wheelbarrow of stuff if you go out of the house
nappy change=give him or he gives you a nappy
milk= cup (empty, just like the one he uses)
sleep = blanket, that can go with him
wash/bath=towel - can go to bathroom with it

no rocket science - and cueing can go either way. It's introducing a system along the line of pecs but it doesn't require any abstract whatsoever as you are using the objects. Sure you may have come across similar with your other dc, it's TEACCH based.

And ditto to the DLA forms, I'll email you a copy of the (successful) app for ds1 if it's any help so you can copy chunks

Couthy, have just seen this, wish I was a lot closer than the other side of the west midlands!

Only thing I can think for the stereo is would your ds3 wear headphones? You can get wireless ones which would enable him to move around the room/house, but would mean he is the only one to hear the music and thus wouldnt affect the others.

Nope, all ideas welcome. Didn't have the best services or support with the others either, so I kind of made it up as I went along (though I was on MN with DS2, I hadn't found the SN bits till he was older, and had some speech.

So I know of PECS because its what we did with the preschool (endless bloody photos and keeping things the same as the photos, now & next, signing that we made up between us as no sign training)

TEACCH? NOW I'm lost!

As for the DLA forms, I'm phoning for them for DS3 tomorrow and will take all the help I can get! It's enough doing the bastard things for my own DLA, I need a charity to help me do that!

I got a letter for a Work Focussed interview today. It is at the same time as my allergy management/SN meeting with the prospective pre school.

I rang to rearrange. They rebooked it for me, so far so good.

They've put the WFI's back into the old IS office instead of the newer JCP building. Due to my muscle probs and the tiny size of the room, and NEEDING to keep DS3 strapped in (or bloody attempt to), I asked for a larger room that I can take the pram in.

I got told to leave him with family. I explained that I didn't have family to leave him with. She told me to pay for a Nursery. They cost £52 a day here. I am currently only getting £34 a WEEK IS because I needed to get a SF loan to buy new beds for my older DS's when their 7yo bunk bed fell to bits, the mattresses were knackered too. I also explained that I was having enough trouble finding any preschool or nursery that could take him on permanently due to the severity of his allergies (one out of 4 has agreed to meet me, all of the others say they can't guarantee his safety), so how the Eff am I meant to leave him somewhere at short notice as a 1-off, without the 11 months of planning, courses for staff etc that it is going to take.

Her answer? Well, you'd best find a solution, or your IS will be stopped.

Aaaaaaaarrrrggghhhhh!

sorry TEACCH is basically communication scheduling systems. The way they do it in USA (Carolina,where it origninates) it's a way of life, but like anything imho it's better to cherry pick the good bits and leave the rest out before you become institutionalised too overwhelmed with it. The basic idea is that it's a prompting system, for which you may either make a plan of what to ask him to do and when, or you use it as a training system for two way communication and you basically show him a nappy to indicate that he needs a nappy change so many times and sooner or later he'll use the same item and routine to ask or indicate that he knows either that it's time for it or that it's needed from his own pov. In reality it takes time but honestly does work. In terms of longer term progress, and to avoid that wheelbarrow of stuff you need that I mentioned earlier, it can (months or years)later be replaced with photos of the items, then on to more generic photos and symbols, and if there's scope for it, written lists and schedules. But those may well be a long way off, and if the objects system works, go for it. It's not necessarily indication of understanding or intellect either, some children just prefer the actual object to a picture, photo or word. And a "thing" can be more powerful than a bit of paper, obv, in showing what it means and what you're to do next. I'll hunt for a link. OTOH, I made my own "guide to TEACCH" when I used to train staff on it. Might pdf that instead.

owing to long posting and slow brain typing, that was an x post.

on your behalf.
ds1 (ASD) also allergic (yes, properly allergic) to cmp. FFS. Insanity.
Take him, imho. They will have to deal.

They will be behind a nice glass window. I will be in a room just 2ft x 6ft with my allergic hyperactive toddler with them telling me I need to do X, Y & Z to look for a job, conveniently ignoring the fact that 4/5 in my house are disabled, including me, because their systems don't even recognise me as disabled, despite the fact that until 2 years ago, I was on severe disablement allowance on top of my IS...

And the little room is always chocolate smeared from previous toddlers. Great place to have to take a CMP allergic toddler that you can't keep strapped down because you can't fit a bloody pram in the room.

There's two chairs in there but they're bolted to the floor.

Why do the people on JSA get the nice flashy office that would be safer for DS3, and the people on IS get the one that is further away from public transport, uphill (great pushing a pram there with my joints, I'll be dosed to the eyeballs on cocodamol to manage that, cheers), old, not designed for disabilities, (think 80's dole office, no baby changing, no toilets anywhere nearby)?

I don't get it. The people on IS having WFI's are ALL either Lone Parents with DC's under 1yo, people with disabilities that are still getting IS+IB top up as they haven't been transferred to ESA yet, or Carers.

Why do THEY get the inaccessible office?

Bastards.

:( Can your GP back you up that you CANNOT attend the interview? can you make the focus your disabilities (even though it's having to take ds that is the major problem?)

thinking of you, hope you get some help soon x

www.signstation.org/

great site for signing.

Defo take kid with you to interview.

Do you get carers allowance or are none of you receiving any dla at all?