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 others don't get DLA either. Been turned down twice for both the older 2 had no help so lost appeals, had no more energy left to fight.

Getting through each day and fighting fires as they come up, mostly the educational fires, is all I have the energy to do. And not even that all the time. A combo of epilepsy fibro and RA is a bitch in itself.

I try to get through each day with my Tax Credits (no disability premiums), Income support of just £34 a week because I am paying back a loan at £33 a week, Child benefit and whatever maintenance I get.

I feel like I'm drowning right now, and nobody is willing to help me with what I actually need.

Which is a night off from ALL the DC's, so I can just SLEEP, and in general, someone to PHYSICALLY do the housework. Because that leaves what little energy I have got free for the DC's. Form filling. A house that fits us all. A level access shower so I can feel properly clean for the first time in 8 years. Some advice on how to deal with the DC's, advice tailored to their SN's.

The thing is, I DO have to access public transport on a daily basis. I have to do a bus journey each way as my DS2 can't walk 0.6miles there, do a full day without falling asleep because of his muscle problems.

So I have to catch 4 bloody stressful buses a day with DS3 in tow. I have had 8 years to teach DS2 to cope with it, and he is more compliant, not a bolter etc.

I can only manage that because it isn't a long journey. Going to town withDS3 in tow is such a nightmare I've only done it 7 times this year.

But it won't look good when I have to catch 4 buses a day with DS3 in tow, will it, to say I can't manage him on public transport.

I can because I have to. I can't run a car because I am legally barred from holding a driving license due to my uncontrolled epilepsy.

Nobody to nominate as a driver either.

DS3 doesn't do any activities outside the home currently - due to his allergies, even toddler groups are unsafe.

DD only does science club at school, and only started that in Y10. Before that she felt unable to manage even an after school club run by the school.

DS2 only does one after school club a week, and it's a hands on club that he doesn't have to travel for.

Other than that, and the football club I bankrupt myself to pay for for NT DS1 to give him a tiny bit of normality on his otherwise bloody hard world (again, club at school but run by the local football team), none of them ho anywhere except the park if I am feeling particularly brave.

Can't do a swap, LL won't allow it, and have nobody else I can stay with.

Family useless. Or worse.

I mean a swap with Ex for the night, his LL won't allow it. And even when he has DS3 downstairs, I wake up when DS3 does. And have to get up because Ex doesn't wake up even though he's in same room.

LL sounds difficult, does she know full situation?

His LL lives in the sane property with him. His LL is, erm, unsympathetic to say the least.

I'm sure you've tried this, but would Essex give you respite using its short breaks for families with disabled children money? Or are yours " not disabled enough"?

Have you applied to the family fund trust for a grant? They hand out smallish grants for equipment etc. Mind you, sounds as though littlest should be called Houdini and he can get out if anything.

Once again, sorry if this us teaching grandmothers to suck eggs, also just trying to think.

Let me talk to y about raising an ADHD child with asd, as it is the ADHD that is stressing you.

ADHD is not as "forever" as asd. Most of the symptoms ameliorate with age. He may always be in attentive, and a bit hyperactive, but the constant climbing, the constant destruction, it will slow down. Although he may never be able to sleep, he will eventually learn to use a ds or something, or watch a DVD without wriggling. He may never get more sleep but you will.

I wish y were closer to me.

Hi Couthy, I'm afraid I'm not a good source of helpful advice but you were so kind to me on one of my threads (about my dh abandoning us to drive an ambulance) that i couldn't say nothing. I'm so sorry life is so hard for you at the moment. I wish I was close enough to help in some way. . I hope your DLA gets sorted and that someone is able to help you with respite.

Colditz is right about the ADHD. And medication takes the edge off it as well. Melatonin for sleep is worth asking your paediatrician about. 4 hours/ night, not good for any child.

Hi couthy, I have no advice sorry but i couldnt read your thread and not reply.
I really feel for you, it sounds really hard work and i hope you get some help soon.

Good luck

And now I've caught the friffing tummy bug. It's sonething so simple, but it's tipping me into insanity! Last time I was welded to the loo, DS3 managed to get over the stairgate, down the hallway, open the next stairgate, get up the stairs, into DD's bedroom, open the hamster cage, and be holding the bites anyone but DD and DS3 hamster.

I can't even leave him to have the shits!

Mine aren't 'disabled enough'. yeah, fucking right. They come and look after all 4 of them for half term then. Tonight I had to physically restrain an Autistic 14yo in meltdown (with the strength of the sodding Hulk), that is taller than me, because she was lashing out to punch 10yo DS1 in the stomach when he only had his appendix out 7 days ago.

Why was she in meltdown? Because DS1 had 'flapped' air at her inadvertently whilst trying to wrap his blanket around himself.

But my DC's aren't disabled enough, according to Essex.

Colditz. When does the climbing, breaking, escaping, bolting, impulsive, destructive stuff calm down then?

I'm worn out after just 21 months. I have days where I have to call my ex in to take over, as I'm so shattered I'm having seizures.

And because he stays on the sofa when things are bad for me, I keep getting called into interviews with Income Support as my bitch neighbour keeps dobbing me in saying that he is living here.

In the 17 months since we split up, I have had 4 'fraud' interviews. And I got a letter this morning for yet another.

We AREN'T in a relationship. I hate his guts. But I have to tolerate him in my home because there is literally NOBODY else to give me practical support.

If he stays, he brings his own food. He sleeps on the sofa. But the DWP believe that we are still in a relationship.

I'm sick and tired of having to justify EVERYTHING.

If Adult Social Care would provide me with the things THEY say I need to cope with my disability, it'd be a start.

If the Children with Disabilities team actually did their job too, it would help more.

If I could get the DLA that I know I should be getting for myself, and Direct payments, I would be able to pay for the Carers my family needs.

But instead I have my EA ex, that holds every bit of help he gives me over me, and often taunts me about having to do this, and threatening to go to court for custody of the younger two (that are his) if I can't cope, as the only fucking person that will help me.

Sometimes I really hate what my life has become. It's a far cry from the strong, independent woman who worked FT whilst gaining a degree AND looking after a child on their own 12 years ago.

Now I am just a shell of a person that solely exists to try to help their disabled DC's achieve their full potential whilst ignoring their own health and needs. Because there is no time left for me.

God, I'm whining. There are people in much worse situations than me. At least I can still hold my DC's and kiss them goodnight each night.

Someone needs to slap me round the face with a wet kipper or something.

And if anyone sees me on benefits threads or anti SN threads or anything, kick my arse and tell me to hide them. Can you do that on the App? Please tell me you can!

I have duly kicked my own arse.

As we are in the 'wait and see' phase (which looks to be quite short this time), could anyone tell me about ABA.

It can't hurt. What can I do at home? Are there any books I can read?

OP, you really need help and you need some respite and the financial help to which you are entitled. You should not be threatened with CP issues because you are asking for things that will allow you to carry on Caring. IMO the statutory agencies listen to other professionals more and it is important to create a paper trail as this cannot go on. Can you get your GP on your side. Can he/she write to Social Services saying that you need that wetroom done for health purposes and that you need regular respite and enough sleep to carry on? When did you last have a Carers Assessment?

I had a care needs assessment done about ME 4 years ago, though nothing on it has actually been provided. A Carers assessment? Never.

You are entitled to a carers assessment, I think. You would be here. My gp is always mithering me.

Couthy, I can't really saw when ds1 started showing more asd and less ADHD. But he's nine now, and apart from some impulsive touching, loudness, lashing out and not sleeping much, it's faded away.

He still does some destructive things but they aren't daily. He still has times when hell pace the house all night, but mostly he'll stay in his room, watch a DVD and let me sleep.

I do have a deadlock on the living room door. This is to stop him getting downstairs while I am in bed. He can still get to the front door but my keys come to bed with me, and go on a chain around my neck.

I still struggle to control him out of the house. But on the bright side, because he's clearly not a toddler, people get out of the damned way a bit quicker.

Shopping delivery is my best friend, I cannot take him to a supermarket' but I think that's because of the asd. He gets overwhelmed.

But he's lovely, couthy. He's always got a grin for me, even if it does look a bit glassy and he's kind to small children who just can't help touching, and dogs who just can't help bouncing, and will tell me firmly "mummy, the dog really can't help it, y know!"

Hw able is your fourteen year old? Could she physically do some housework and is it worth paying her to do so?

OP,you have a legal right to a Carers assessment. (Carers Equal Opportunities Act 2004?) There is information about the assessment on the NHS website and also I assume on Carers UK website. There is a freefone helpline 0808 802 0202 Carers Direct -given on the NHS website- the phoneline is open Mon -Fri 9am -8pm (not bank holidays) and weekends 11am -4pm. It says it is free for landlines and mobiles and you can request a callback.
It may be that after the assessment is carried out you do not get offered the services you need (but hopefully you could) but you need as a first step to get the paperwork where the LA give you a written decision so that you (or someone acting for you) can start challenging it.