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.

This sucks.

Just to say i have given up on ss as a pile bricks to hit my head off. If you have a local advocacy service who are any good or a good local councillor then HAND THAT OVER to them so it's one thing off your plate.

What has helped me immensely is children's hospice - they have nurses that can come help as much or little as you like at home or you can all go there for a break. I am in scotland so different locality but i think the service may be same all over uk. call them today, tell them you are desperate and can you have help if you qualify please. Even if they just come over and chat they may be able to suggest other options. There was a waiting list here (took a couple of months to and fro for referral etc) but once we got through that bit it is like having extra help on tap. I also had homestart last year and that was ace.

We are becoming a society dependant on the charities because the government cut backs are affecting the entitled services to the point where good parents coping in difficult circumstances are not allowed to ask for help or threatened with CP if they do. It is wrong. It is to save money and it is going to cause more parents to struggle to the point of not being able to manage.

By all means do the proper channel paper route when you have time to breathe and someone to delegate letter writing to but right now you are fire-fighting and the charities are your best bet. Maybe consider SN nursery placement or residential school for future? Not a nice subject but sometimes better for kids esp on spectrum.

I have 2 with sn, pay for help 1-2 days per week and have asked hospice nurses for one morning a week. I am barely sane and apparently in good health. Last year I ended up with no help except homestart for a good few months and nearly reached the end of my rope. You can do this but you need help in the form of people in your house doing the kid stuff or taking them out and giving you a break and that might mean paying for it (could ex help financially?).

Like I said, it sucks but you can do it. You have to. And if I win the lottery you are first on my list ok?

why do mn biscuits look like norks?

little things you could do now to help process report shock is writing out symptom list (then and now sort of thing), a list of questions to go with it for your next dr appt. You could do that for everyone, print it out and give copies to people like hv or ss, you know keep em handy to remind folks what your life is like and why you are asking for help? I do this, just with latest reports and diagnosis letters but you could do your own with med times, change times, sleep times - really give them an idea of what the daily timetable is (bit like the DLA form). Sometimes giving someone a report on paper that can be stuck in a file to remind people is more effective than talking where they can tune you out whilst nodding sympathetically. I have trouble keeping cool in a lot of these meetings which is why paper works best for me.

I know the diagnosis is not what you wanted but at least you can now tell people what is up with him and try to get appropriate help in place for him, go to specific charities etc. Don't know if it would apply to you but last year my local hv said they sometimes get surestart-type funding for kids to go to a local childminder and she could arrange that for my youngest (2yo). I sent him to nursery a couple of days instead and I paid cos they wouldn't fund that - it wasn't feasible as his condition worsened, they couldn't cope. Maybe your local authority has something similar on the go?

Sorry for the long post, one day at a time, the only constant is change right?

I mainly wanted to hand hold for what is an incredibly difficult situation for you.

I wonder if the Disabled Parents Network could help re direct payments. They have a helpline (can't lay my hands on the number at the moment but if you google it you will find it) and I know they have helped parents with difficulties with SS in the past though mainly people getting passed between child and adult services. Would be worth a try anyway.

also get on to physio and ot and ask for a sn cot bed that can keep your ds safe at night so you can get some sleep. Do a list of why he needs the bed (safety) vs not having the bed (impending doom). Do your homework and decide which bed you want before you talk to them. Contact the companies direct and have them come out at the same time as the physio ot appt so they can sell the idea direct. Don't know which one is best cos you might need a roof on it to stop him climbing out but here are some to start with;

www.bakare.co.uk/solutions/special-needs-beds/savoir-vivre-special-needs-cot-bed/

be aware, default response will be no, you may have to letter write and fight for this one but if you have written to the head of dept and get refused then dc gets injured during the night then it's on their head (iykwim). Obviously don't want ds injured just sometimes pointing these things out to those in charge of the purse strings sometimes helps them see sense...

I should perhaps point out here that my local paed physio dept despise me, I am on first name terms with the head and she dodges my calls like crazy!

SN Nursery is inaccessible to me, had that problem with DS2. Got offered a place, but live right across town, and it was a 50 minute journey on two buses.

It started at 9.30. I am a Lone Parent with school runs to do!

And it will be the same with DS3. Will get offered a place, but be unable to take it up.

No room in house for anything larger than a cot bed as he is still in my room. I am about 30th on the list for bigger social housing. Waiting for a 4 bed. Have waited 2 years now, probably another 3 to go.

Cot bed is wedged between my bed & the wall. House was too small 4 years ago, waited 2.5 on list for a full size 3 before I got put up to the list for a 4.

Housing situation NOT helping.

Do you want a giggle? Adult Social Care assessed me as needing a level access shower/wet room 4 years ago. They still haven't referred me to OT. Last time I pushed it I got the old chestnut about CP for the DC's if I pushed for more help for myself...

then lea should fund transport and assistant if needed, don't know what law is in england but in scotland they are obligated from primary school age and is still open to debate for nursery age. Perhaps you could play ss and lea off each other, ss need provide less care if lea fund place and transport? I know you get nothing now but think of it as a theoretical question and start the process now. In scotland there is free legal assistance for this sort of thing;

govanlc.blogspot.co.uk/p/about-glc.html

again I have no idea what situation is south of border, you need parents locally who have been there done it to help i think. Maybe spectrum charities have a buddy system?

what is your local councillor or mp like?

And LA won't accept my need for a level access shower unless OT report is presented.

Mucho gatekeeping in my LA.

Same old sane old for nearly 15 years. Am so tired, currently fighting for my own needs to be met, trying to get support in place for DD post 16, trying to get support in place for DS2 who has been illegally dropped from SA+ to SA, and from SA to nothing in the space of a year despite still having physical issues that aren't going to vanish, they're bloody life long, despite being way behind his peers. And now have to start fighting for DS3 as well.

Where do I find the energy to keep fighting after 15 years of it? Feel worn down by it all ATM.

www.angelssupportgroup.org.uk/

are you anywhere near this?

I can't access the support groups for ASD/spectrum probs. bus fares are too expensive. £10+ to get while family there, and an hour+ on the bus. Eminently manageable with two older DC's on the spectrum, plus a bolter that runs up and down the bus.

No support forthcoming to help with transport and access to support groups. LA say apply for DLA.

Brick wall, anyone?

Nope am under bastard Essex LA. bloody useless, they are.

I know it's the bloody paperwork that grinds a person down isn't it? you need a really good advocate. Anyone in your lot got a brain injury? I got free legal help from that and it was a godsend. Access to a free lawyer would get a lot of the paperwork done for you...

Far out on border of Suffolk too. Chelmsford has more support, but is too far away for me to access. Ipswich is actually closer! But out of county, so no funding available. Another brick wall.

definately apply for DLA

No brain injury. I have uncontrolled epilepsy, but it doesn't qualify for the help you get with BI. Despite having many of the same symptoms.

I fall JUST below the criteria for a lot of charities. They do their tick box test, and I'll be 1/100 points too low, so they can't help due to funding constraints.

Just so bloody sick of it.

I have a charity helping me with the form for myself. Am going to get onto trying for DS3 after half term. Not possible with the others at home.

Too busy trying to manage behaviour and stop DD from killing DS1 and DS2. Literally.

Just wish I could take them out. Last time I took them anywhere was in 2011 when I took them to the science museum. This year I haven't had the money to even take them 30 miles down the road to the beach. I haven't been outside of my town other than for medical appointments in other hospitals for around 15 months. And I've only been off my estate 7 times since January.

I feel hemmed in.

www.essex.gov.uk/Health-Social-Care/Care-Children/Aiming-High-for-Disabled-Children/Pages/aiming-high.aspx

website looks lovely!

I know you feel like you are going in circles, it's cos you are tired.

Focus on what you can do, baby steps?

Once you get a bit in place then you will have energy to do more. I don't know you but it sounds like you are reeling from another shit diagnosis and I totally understand that sick not fair feeling. Maybe you just need to give in to it, have a good rant and a cry and try to get ex to give you a duvet day or something? You are only human and life is a bastard sometimes, go punch a pillow or something. It'll pass, you can do it.

All these agencies you have to deal with are constantly in flux, different people all the time, crap record keeping, it's why nothing gets done. When you are up to it you can get back to telling them how to do their job like it is your first time of asking but maybe for now you need to just give yourself a time out?

That's fucking awful, wish I was nearby and could come over with a box of jaffa cakes and help you fill out the forms.

Need a shout out, calling all essex parents of sn perhaps?

Maybe. I'm in North Essex btw. South Essex has much better services.

I only got my own dx of Rheumatoid Arthritis 4 weeks ago. To go along with the epilepsy and fibro.

Life is a bit sucky right now.

Ex needs a break - we have been fire fighting this last week what with everything, & he works FT too.

He can't give me any more money - he only earns £16k and is already paying £90 a month more maintenance than he should be, and even that's only a drop in the ocean towards what I need, and he can't do that indefinitely.

He can't have DS3 overnight to give me a break as his room in a shared house isn't safe and his LL won't let him. He can't afford to rent a place he CAN have DS3 overnight while he is paying me that extra maintenance.

Catch-22.

I can't do without the money, but I need the break equally as much. But it's one or the other.

Can you do a swap so he stays with kids at yours a night or two a week and you go to his and sleep?

or he stays at yours and you go to friends or family for a night?

agreed about the money, glad your ex is helping. Mine is too and things are financially manageable but am well aware if he stops paying for any reason we r screwed!!

sorry just brainstorming, you have probably been round this a billion times [hwink]

The mobility would be paid on all the evidence of needs... GP/hosp/specialist appointments/emergency..basic daily shopping needs, being able to go out of the home to access anything... be it basic need or leisure/pleasure, what a typical situation when leaving the house entails, walking around outside eg non-compliance, restraint, refusal to move, running off, safety, lack of understanding for the person/child, ability to be within an environment outdoors, allergies and exposure to things which could cause severe reaction, behaviour and ability to manage that..all travel which requires transport and that public transport is not an option due to the severity of the above details, etc

By car is probably your only realistic way of travel ...you couldn't access public transport for ANY purpose with your DC due to danger, vulnerabilities, allergy issuses, etc, etc and for the fact that you have more than 1 vulnerable child in any given situation aswell ...I would be very shocked if you did not get Higher rate Mobility and I would be pointing them to the fact that DLA is in place for your other children and that this is yet another area of great difficulty when being out doors...basically it just isn't something you can do and therefore you are very trapped within your home as a result of these issues.

You know the bit that asks about what the person likes by way of activities and interests outwith the home?....say nothing fgs...otherwise it looks like you are talking bollocks about the above and you will have shot yourself in the foot immediately!!!!...it says but the person obviously does go out and do things regularly...how is that then???...they won't consider the immense amount of planning, organising and how many people have to be invloved in order for the person to access the activity...just that they do an activity is enough iykwim

I wouldn't be worried about CP issues and DP's are not based on CP issues anyway...they are a record of a familys need for supports, the purpose is about realistic supports for a family, in order to support and maintain that family with the carer in a position to maintain their role and home life positively...that nobody is a bottomless pit and can sustain alone in a situation such as yours is. Your children have needs and you cannot maintain this level of support for them without having realistic support yourself in doing that long term...that all of you 'need' supports, help to access things, even if you can use the dp's to pay a carer so you can get to appointmnets with just the 1 child instead of trying to manage with the whole tribe in tow...lowers your stress and ability to manage in this situation...your attention on 1 child and not them all at once would be a massive support for you...it's basic but would make such a huge difference when the appointment is looming and you're worrying about how you will get there, how you will deal with it and manage it...thats fucking really hard...how a 20min appointment can be like climbing a mountain with a heavy back pack and a chest infection...you need support so that you are not constantly feeling like your climbing mountains just trying to get through the day...nobody could do it...no matter how brilliant a mum they were....you are not super powered!!

I think you would be wisest to go straight to the top of SW and see your MP too...enlist your public servants to do their jobs to help you.
start writing a statement of needs, detail every area of difficulty, what that manifests as daily, what supports you believe would help your family and as individuals....ask for the moon and you may get close to your needs be fulfilled properly and realistically....tell it like it is.
It's a big undertaking I know...but as is always being said...who else will if not us?...get onto your PC and start typing as much as you can...like scribbling thoughts...you will eventually format it, concise it, organise it and end up with a clear detailed statement you will be ready to send to anyone and everyone....it's actually quite a therapeutic process too...getting it all out and in one place...instead of trying to carry it all inside

Sorry this has turned out so long to read..daunting in itself but I hope it has made any sense and is of some help...always here so PM me anytime too