Here some suggested organisations that offer expert advice on SN.
Fuck fuck and FUCKITYFUCKITYFUCK!!
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."
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?
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?!
I wanted to be fucking WRONG this time.
Now my phone has been cut off, because I can't afford to pay the friffing bill. God knows when I can afford to get it put back on.
It never rains but it pours.
couthy, if you ask adults with disabilities team to install a pendant/alert alarm system for you (so you or the dc could easily summon help for a fit) then that runs off the phone system. Then BT aren't allowed to simply cut you off.
I think they are only allowed to ban outgoing calls (except 999) when you have a severe disability and rely on the phone. This might have changed tho, but it used to be the case. Priority fault repair still exists, worth registering for.
Ah, it's my mobile, I don't have a landline. BT want a £300 deposit from anyone in my street before they will let us have a landline. Yet we can see the exchange from our front doors.
Think you might get it free with alarm system (here anyway)
Ps suggest start a new thread, this ones getting a bit long and unwieldy
And now I'm getting messages on fb telling me I'm a liar making things up about my DC's, and that I'm sick in the head.
Messages are probably from my DS1's dad's partner, who is, well, a nasty bitch. DS1 no longer goes to their house because she grabbed DS1's arm and bruised it, and raised her hand to hit him, back in August.
It means that someone who is meant to be my friend is passing things along to her. So now because I don't know who is telling her what is going on with my life, I daren't speak to anyone in RL about it in case I get nasty messages again.
I need this like a hole in the head - can't the bitch just leave me alone? I don't go near her, I don't talk to her, I don't get drawn in with her. Why can't she just do the same with me?
It doesn't help that the majority of my friends were friends that I had when I was with DS1's dad, and therefore they are still friendly with both of us. I've never wanted them to 'take sides' in anything, but she seems to insist upon it.
Since DS1 stopped going round there, I have started to see who my real friends are, the ones who stay friends with all of us, without stirring. But to know that there IS someone that is, well, it means I don't know who the hell I can talk to.
I don't know, I shouldn't let it get to me, but when it's being done anonymously, it just makes it worse. If you want to say something nasty, the least you could do is have the balls to do it under your real name and not hide behind a pseudonym.
Ugh. I hate this. I know I'm not 'sick in the head', my DC's have documented issues, two have been under the developmental Paed since 3mo, they have been through speech therapy, they have been through Physio & OT, ENT, Audiology, Proprioception clinic, cardiac consultant with my DD, still under the school doctors, DD still on the SEN register in Y10, DS2 should be but that's a fight I'm yet to tackle
If people don't believe me, I shouldn't take it to heart, it's their problem. This many NHS consultants can't ALL be liars...
It's just easier said than done when you don't know exactly who it is that's either passing messages on to someone they know has a vendetta against you, or is joining in with it if that is the case.
Dont waste headspace on this. Really. She's probably hacked someone's FB to get a look at your info. Maybe even ds1's. Or she's asked a few 'innocent questions' from someone too naive to realise she was planning a poisonous moment. Or heard some RL gossip via the estate. Or she might be on MN.
She might well even done this on purpose knowing it'll make you suspicious of all the joint friends. Falling out with people, not trusting, being isolated and feeling bullied... Don't fall for it.
Come on, start a new thread. You'll get way better advice than mine with one that newbies can actually read through. And if nasty woman is stalking you on mumsnet, she'll have to wade through loads of threads to keep tabs and might even learn something.
Tbh, she's more if an NM person, I doubt she could find me on here.
I'll start a new thread then. I guess I've been on here so long that I forget that long threads can put off newbies!
DS1 is too young to have fb. So it is just her stalking my fb. But I'm not going to let it get to me too much, just be a bit more guarded with who I talk to.
It's just difficult when you've had a hard day, and someone asks how you are...
You have a lot to deal with, you are being given the SS, DLA LEA runaround.
They tried this with me, I have three who have autism am a widow and have a neuro disorder severe allergies and a knackered back.
When my DH was terminal we got very little support.
Making a complaint about SS and getting our MP Involved did the trick, full care package and some respite.
I was told no one respite couple can be expected to meet the needs of more than TWO children with a disability.
Please do contact me if you think it would help, I'm happy to pass on anything that could be of use.
You don't need those kind of politics on top of what you already have to deal with, why on earth can't people just back off and behave like grown ups. Grr.
Then again, I guess I could empathise, I've had people nice to my face, tell people behind my back I am not a fit parent for my children. People can't help their silly selves.
And perhaps I should be all wise and patient and think, well at least they only have these piddling things to occupy them, at least they don't have the holy hell that is my life sometimes. But actually I just want to rip out their tongue for ever suggesting such a thing.
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