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.

the sign for change is quite good for nappy changes and easy for kids to do but can't be misinterpreted as something offensive like the makaton toilet sign can be.

Nope, no Carers allowance because when I was getting DLA before for myself, I had to choose whether I was disabled or a carer.

I can't have DLA for myself AND carer's allowance for the kids.

And no, none of us are getting DLA right now. Despite 4/5 of us having recognised disabilities.

It makes me laugh that if I had a partner, they could claim CA for the DC's AND I could claim DLA/ESA for myself, but as I'm single, the computer says no!

It makes me laugh that the DWP doesn't recognise the fact that there ARE disabled Lone Parents out there WITH a disabled DC. Or even more than one disabled DC.

Surely we are in an even worse position than a fit, healthy Lone Parent that is caring for a disabled DC, as we can't physically manage all the care ourselves, and therefore have to pay out more money in order to cover that or those DC's care needs?

It just angers me that the DWP refuse to acknowledge that bare fact.

I've even been told before that I should have a partner and that it's not possible to be a disabled Lone Parent with disabled DC's, because if I can care for disabled DC's, then I'm not disabled myself.

Errrrrr, nope, I just kill myself a little more each day trying to meet everybody's needs with little to no support!

The DWP have told me before that I am unique, and the ONLY one of their 'customers' in the entire country that is in this situation. Which I KNOW is bollocks. And that was from an area manager that manages a very large area.

Arse, elbow, and not knowing the difference springs to mind...

Will have a look at that signing site layer when I have more time. I have to go shopping now.

Thankfully I insisted the Ex took this week off work as holiday, so he can have most of the DC's. his two and DS1, as he still isn't up for trundling through town and the supermarket. DD is coming with me to help carry stuff.

We both have physical disabilities, so today is going to result in two people on painkillers tomorrow, the cost of bus fares AND taxi fares (travelling alone for two of us is going to cost me £13 today), and me sleeping it off for half the day tomorrow. Thank god the two youngest will be with their dad.

That's how hard even paying the bills and going shopping is.

OP, check with the helpline number I gave above. If one of your kids gets middle rate Care DLA and you are caring 35 hours you can get CA even though you are on DLA yourself. You can be disabled and a Carer. You can be a Carer and claim Income Support to top up. You need someone to look at your whole family situation with regards to the benefits you are entitled to. Did you ever go to the local CAB? This is the sort of issue they deal with a lot.

The CAB were who helped me to get my DLA in the first place. But when it was my renewal time, I had just lost my IB, when I was transferred to ESA they stopped it (!), and I couldn't get a CAB appointment for 13 weeks and I only had 12 to get the renewal form back.

So I had to try to do it myself. Don't yet get DLA for the DC's, they keep saying their care needs aren't high enough. I beg to differ.

Maybe the people at the DLA offices would like to look after my DC's for the rest of half term and tell me that they are the same to look after as the average 14yo, 9yo and 21mo?!

How are you doing Couthy? when is your IS appointment?

I've managed (after speaking to a manager!) to get it swapped to the 20th November.

DS3 is ill with god knows what - the only symptom is a raging temp. Under control with nurofen though.

And my IBS is playing up. Too much stress for two weeks. I feel like shit. Literally.

My 9yo still can't effectively brush his own teeth. Or wipe his own bum properly. But his care needs are no higher than the average 9yo's, are they?

My 14yo inches the wall every time she has a meltdown. Or my doors. Or her 10yo brother if I can't restrain her in time. And I often have to get her dressed when she is having a meltdown before school. She can't get her clip on tie on by herself. She can't do her own shoelaces. But, again, she requires no extra care than most 14yo's.

Inches = punches. I swear autocorrect hates me.

my 12yo can't brush his teeth independently or wipe his bum. But we got middle rate care for him. I'm serious about emailing you a copy of the application.

It is on my to-do list to phone for a DLA form for DS3. Thing is, my own has to be back by 20th November, and I've not yet started on it.

I am ringing the lady from the charity that's meant to be helping me with mine, to book an appointment to get it done in time.

I don't know if I have the mental energy do deal with two deadlines at once when I already have 17 appointments this month without my own and without all the school stuff for Christmas that always happens in November in our Primary for some reason.

Plus I have DS2's birthday presents and party to sort out.

I was going to wait until the 18th-ish, when I post my own form off, before ringing for DS3's, so that I'm dealing with one at a time.

But that email would be much appreciated then!

And if I thought I was having a shit time, expat humbles me.

I need to do a bit of research tonight for her, but I will be in and out of MN while looking.

I'm in awe of you too. In an utterly crap situation yourself, you're always helping others. Accept a bit of the help offered to you too :)
inbox me an email addy (and kick me remind me when you are getting round to it, I have the memory span of a goldfish. Also blame appointments for DHs chemo, dd's orthotics, ds1s camhs, I could go on lol)

Take him to the JSA appointment. With the latest Hosp letter re the allergies. Hand it in at reception whilst you wait outside, while the desk lady calls the duty manager to confirm that their waiting area is 100% nut/soy/dairy free. And that the health and safety assessment re child anaphylactic reactions is up to date.

Should ensure an exceptionally short interview, probably in the car park .

Btw, you can be on dla and carers at the same time. I know, cos my MIL was.

But on carers you cant get ESA or JSA, and you lose the income support single person severe disability premium (wrong name but you get the gist) which is worth a bit more I think.

Main advantage of carers is avoiding the stupid work focus interviews and ATOS so-called medical assessments

Is there a Contact a family office near you? My one locally helps with DLA forms for the children. Contact a family website
Also I assume you have seen the CEREBRA guide to filling it in which would give you a headstart before you got help.

Um, no, I didn't know about those two things you've just shown me. Which may well help. .

I had my blood tests and DS1's blood tests done today.

DS1's tonsillitis has finally gone, after 6 WHOLE weeks where he couldn't even swallow without painkillers. Hence his blood tests. Because it's not normal to be unable to eat or drink without painkillers for 6 weeks without a break, despite 2 courses of AB's.

Did tons of admin this morning. Bores me fucking rigid and I usually make a hash if it, but I'm trying.

Due to memory problems from the epilepsy, the only way I remember appointments is to have post it notes along the bottom of my kitchen cupboards. I have 36 up there right now. ALL important. I just looooove November, and Consultants trying to get extra clinics in before Christmas.

November is always a shitty month for that!

Afternoon, I spent an hour on the phone to the anaphylaxis campaign, and 3 local fast food restaurants. Discovered local McD's is very allergy aware. He had his first McD's before we went to watch a firework display.

DD was wound tighter than a watch spring, flinching when anyone in the crowd went near her. It's the first time I have dared take her into a crowd that big for 8 years. She coped until we got home when she had a massive meltdown when DS1 breathed near her. (Yes, literally.)

20 mins in her room, sewing, shutting the world out, and she was right as rain, though. And could tell me how much she lived the fireworks, but how tense she felt in the crowd. I asked her what would have made it better tonight, and she simply said "Let me watch the pretty fireworks alone. Nobody else there but me and the fireworks."

DS3, who never bastarding sleeps (see, am still effing awake...), slept through the whole bloody thing. That he would have LOVED. Even the noisy as hell, boom through your heart finale. He was still asleep. Oh well, try again next year!

Tomorrow is going to be like kicking a hornet's nest.

DS3 needs bloods done. We can't cut his toenails properly with two full grown adults, as we can't hold him down.

How the FUCK they think they are going to get a needle into him for long enough to actually get any blood out into the bottle, rather than all over the floor, is beyond me.

Even when doing his 4mo jabs which were given very late at 15months, the Nurse had to call the GP and the Receptionist in to help me hold him down.

It's not going to be pretty.

Then I have to sell my soul to the devil or something to pay the school £14 for a school trip (it's not that bloody far, either, and the exact same trip was only £9 two years ago when DS1 went.), remember the slip for it, go to the office, ask for the footy slip, pay £10 squillion (it'll feel like it...) for that.

Possibly actually remember to pick the DC's up from school. Maybe.

Then I have to rember to pay the gas bill, phone bill, put electric on my key, phone the repairs team that didn't bloody phone me back the lying gits, about my sodding boiler switches that I have now reported no less than 34 cunting times in 3 years, you useless HA repair team incompetents!

And do a big monthly shop.

So, a quiet day tomorrow, then?!

Tbh, asking for a risk assessment is nigh on what I HAVE done. And the advisor doing my WFI was meant to ring me back. Like on Friday. So I guess that's another job to add to the pile. And another post it note.

RING BACK ADVISOR FOR WFI ABOUT RISK ASSESSMENT.

Gah. Come on here to hide from RL, and get another post it note to write.

Oh this SS neglect makes me cross (not at you -SS). You have a disabilty which is worsened by lack of sleep and stress and makes you temporally less able to care ( during seisures)--but are excluded from help?? Where's the sense in that! I am furious on your behalf. I rarely post because I am not very clear headed but my thoughts are below.

At present it seems that DLA and SS do not (yet) acknowledge that your dc have disabilities. Is the person helping you with the DLA form likely to be able to help with applications for the older two? I think it would be hard to ignore a family entitled to several lots of DLA surely? Ask (or get a respected professional to request pointing out the ill effects are all this on epilepsy) for a carer assessment from the disabilty team in SS. Once the carer/family assessment is underway they cannot fail to see and ignore surely? We were ignored years ago for assessment and finally ( once I was seriously ill and keeling over regularly) a professional wrote to them which carried more weight than my calls. I think too they will take more notice of a letter - they can 'loose' phone calls.

My ds( now 13) is diagnosed with ADHD/ASD (and LD) and life has got easier as he has matured. It has been a gradual process so I cannot say when - just small steps each year. What I can say is that I would not want to go back to 21 months again - so you have my sympathy!! Ds is affectionate busy and friendly. And yes we used reins, straps, locks and anything else to keep him secure. I think the main thing is he cannot do waiting so always needs to fiddle, he always wants to know what is inside/underneath/behind (enquiring rather than destructive) and he cannot just look he needs to touch!

You sound like you are doing an amazing job.

Just a little thought, our school does (very quietly) have a fund to help parents who have difficulty affording school trips. Does your school do something similar?

Magso has a pint about contacting SS in writing. I find that a letter sometimes gets a better response as they have to reply to all letters. e-mail with a read request can be good here too.

One more thing - is your boiler situation dangerous? I have a friend who has just told her local HA that until they fix her leak ( into lighting - dangerous) she will with-hold her rent. she has it tucked away ready to pay it. They rang her and threatened her and she said " so take me to court then and see if the judge thinks I am being reasonable given how many times I have contacted you and you have failed to make the repairs and are putting me in danger". She had it repaired the following week.

Had a call about the boiler today after I kicked off on Friday, and they will fix it on the 16th Nov when they do my boiler safety check. YAY!!

I've been looking at things my DS3 does. The more I think about it, the more I see how much I think he has Autism.

It's the little things. Teeth grinding, I have to prise his jaw open to stop him, repeatedly, daily. Head shaking. We have jokes that he is like a St. Bernard, the way he shakes his head violently and the slobber flies everywhere. The spinning round and round in circles. If he falls over, he gets back up and carries on. If I don't put tight trousers on him, he will play with his willy even getting his hand up the bottom of his popper vest, and then down into his nappy. Spinning car wheels for hours. Running his hands along metal railings, and screaming if he can't go all the way along, all the way back, then all the way along again. Flicking the light switches on and off. The way he bites himself when moved from something he shouldn't be doing.

It's all sensory seeking, isn't it?

Then there is the fact that he had some speech - in fact was quite advanced at one point. Then he regressed. Now he has approximately three 'words'. Didlidlidil which he uses for milk - he first used that at 4mo. No. Wassat. That's it.

Just a few months ago, he was trying to sing 'ed, solders nees an does'. A few months ago, he could say dog, meeow, ball, mum, dad, an attempt at his sister's name. And lots more. Now, just 3 words.

He failed his hearing test in hospital, mostly because he kept pulling the earpiece out of his ear, so they couldn't get proper readings. He was under ENT until about 7 months old when he passed the hearing test. ENT did a hearing test when he was 4mo. he failed that as he was too active to comply with the test. he was seen again at 5.5mo. Same thing again, too active to comply with the test. At 7mo, he complied with the test, and passed and was discharged. His hearing is fine.

He wasn't interested in peekaboo until about 18 months old. And the DC's were playing every day from tiny with him.

He only started turning to his name a week ago, at 21mo.

He has started just this week, again at 21mo, putting a torch toy in my hand because he can't press the button and wants me to do it. Today he put a toy sword in my hand, wanting me to be a pirate. But it's only been this week.

He avoids eye contact with anyone but me and his dad. Literally will turn his back on them.

He has been diagnosed as hyperactive with a high probability of ADHD.

He has severe allergies, so immune system issues.

He has had sleep issues since birth.

He did 'pretend play' for the first time ever today. He is 21.5mo. I have been modelling it for bloody ever. Our breakthrough? He put my phone up to my ear, and smiled when I said hello. Then he put the phone to his ear and looked expectantly at me until I said hello for him. Then he smiled. Repeat ad infinitum until I had to leave the house. Over an hour. Me then him, me then him. Not once did he attempt to say hello.

He can do 12 piece puzzles with ease already, mind you. Build the most amazing models with his Mega Blocks. He has learnt this week to give kisses to me. Nobody else, not even his dad. Only me. I get ALL his kisses! He is generally happy unless stopped from doing what HE wants to do.

If he isn't diagnosed with Autism, I think I'll eat my own shorts.

Now. How do I help him? I need a list of what to do. I got near enough bugger all with the older two - I got handed a stack of leaflets and left to get on with it.

This time I want to be more proactive.

Private anything isn't an option. NHS appointments take ages to get, and are too widely spaced to be of much therapeutic use IMO.

So. Any pointers?