Here some suggested organisations that offer expert advice on SN.

Fuck fuck and FUCKITYFUCKITYFUCK!!

(210 Posts)
CouthyMowEatingBraiiiiinz Sat 27-Oct-12 00:24:32

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.
sad

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.*
6) 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.

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 12:25:15

At 3.5mo, he learnt how to get out of the straps on his bouncy chair and roll off.

By 4mo, just 24 hrs after I bought his Bumbo, he worked out how to get out of it with the tray on.

By 7mo he had learnt how to wriggle free of his high hair straps and throw himself out of it.

By 9mo, even before he could walk, he could climb out of his pushchair, no matter how tight the straps are, and climb down and crawl off.

By 11mo, he had learnt how to throw himself over the side of his cot. Not that he ever slept in it, even when he did sleep.

By 15mo, he had learnt how to wriggle free of every brand of reigns on the market, even if they were tight enough to cut into him.

By 16mo, he was in a toddler bed, for safety.

By 17mo, he could wriggle his hand out of yours even when you held his arm in a death grip.

By 18mo, both me and my Ex had given up on doing ANY shopping with him in tow.

By 19mo, he had worked out how to get plug socket protectors out, how to open cupboard locks, and how to open 3/5 of my stairgates.

If he sees a dog, or a bike, he will push over ANYONE or anything in his way. He has pushed over a 10yo in his hurry to get to a bike.

He tries to run into the road after cars. He is your classical 'bolter' times 1000.

I don't know how to manage him or keep him safe tbh.

GoreyClaWsPumpkinHeed Sat 27-Oct-12 12:35:35

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?

brew biscuit 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?

hmm

NoHaudinMaWheest Sat 27-Oct-12 12:39:34

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.

GoreyClaWsPumpkinHeed Sat 27-Oct-12 12:50:30

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;

http://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!

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 12:51:41

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.

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 12:56:42

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...

GoreyClaWsPumpkinHeed Sat 27-Oct-12 12:58:02

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?

GoreyClaWsPumpkinHeed Sat 27-Oct-12 12:59:10

what is your local councillor or mp like?

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 13:01:27

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.

GoreyClaWsPumpkinHeed Sat 27-Oct-12 13:03:15

www.angelssupportgroup.org.uk/

are you anywhere near this?

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 13:04:02

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?

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 13:05:15

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

GoreyClaWsPumpkinHeed Sat 27-Oct-12 13:05:37

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...

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 13:06:27

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. hmm

GoreyClaWsPumpkinHeed Sat 27-Oct-12 13:06:29

definately apply for DLA

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 13:08:46

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.

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 13:12:59

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.

GoreyClaWsPumpkinHeed Sat 27-Oct-12 13:15:06

http://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?

GoreyClaWsPumpkinHeed Sat 27-Oct-12 13:17:56

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?

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 13:37:16

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

CouthyMowEatingBraiiiiinz Sat 27-Oct-12 13:42:03

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.

GoreyClaWsPumpkinHeed Sat 27-Oct-12 13:45:53

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?

GoreyClaWsPumpkinHeed Sat 27-Oct-12 13:46:36

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

GoreyClaWsPumpkinHeed Sat 27-Oct-12 13:48:22

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!!

GoreyClaWsPumpkinHeed Sat 27-Oct-12 14:06:28

sorry just brainstorming, you have probably been round this a billion times wink

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