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Oh Bloody Hell I'm not ready for this!!!(54 Posts)
I phoned up the Paed about the Section 332 form (found out it was sent over to Education in October last year,so now need to contact SenCan...)
While I was on the phone, I enquired about how much longer I would have to wait for his Microarray results...
Turns out old Paed has left, results are more than likely back and in his file, not been contacted because old Paed left with minimal notice, threw dept into 'disarray', so 'may have been forgotten'.
They are checking his file and will be ringing back to tell me results if they are in his file.
I'm not ready for this!!!
If they have found anything, it will be not just what is causing HIS disabilities, but also what is causing DD and DS2's disabilities too.
I'm shaking that I may finally have an answer after 15 years of stress.
What if nothing showed up? What if something DID?
Fuck, I didn't think I'd feel like this about the results. I've been waiting for answers for so long over 3 DC's that I thought I would just be relieved if they found an answer but I'm scared and shaky and nervous and just everything all at once.
I think I need some hand holding. Which is unlike me. I'm literally physically shaking.
And the SN Nursery placement I may have found are ringing me back to arrange a visit too.
Fuck this all TOO real now!!!
Bugger. Missed a call from an unknown number whilst I was on the phone to the Statutory Assessment team (who have advised me to send in a request for statutory assessment!)
Was probably the hospital.
Haven't got a direct number, only hospital switchboard. First time I rang and got told they will pull his files and ring back, I got put straight through to the right person.
This time, I rang switchboard, got put through to person A, who said that I needed to ring X number for the community team, so I did. Not them either, they put me through to someone else. THAT someone else wasn't the right person EITHER, they put me through to yet another person - who only had an answerphone, and it was the continence service. NOT who I need at all.
Can't believe they rang back while I was busy with someone else.
Also, education is further along than I thought - DS3's case has been up in front of the preschool panel, they are sending a specialist SN preschool teacher out to do an assessment, and then it will go back in front of the preschool panel to see if he needs specialist teacher help at preschool.
That plus the statement will hopefully = the placement I have found for him!!
Why wasn't it this easy with my older 2 DC's that I'm still fighting the SAME education authority for help with?!
Will phone the specialist preschool teacher to arrange the assessment, and then I will try again to find the
needle in a flipping haystack right secretary that was going to pull his notes about the Microarray chromosome test.
My ear hurts from making so many phone calls. But I've only got today to do them all, because tomorrow I'm filling in 4 X medical needs forms at the council, all day appointment really, Wednesday I have my fasting blood test, Thursday I have DS3's first appointment with the brand new SN HV, and Friday is his sensory needs group in the morning, and I need to do my shopping in the afternoon.
Plus I need to remember to make a phone call to transition pathway services r.e. post 16 for DD.
Not much to do then...
Omg, what a week....and its only monday. Be kind to yourself and I hope the hospital phone back.
I still have to fit in 4 lots of Physio teice a day (one lot for each of four of us twice a day IYSWIM), plus 3 meds rounds!!
Hi Couthy, I will come and hold your hand until you manage to track them down and get the results.
You're bound to be stressed out. It's an odd feeling waiting for someone to tell you something that you know isn't likely to be good news, but you need to know to make sense of it all.
Hope either they call back soon or you manage to track them down.
Cross posted with your last couple of posts, sorry - had several threads open in different tabs.
Blimey, you have such a lot on your hands at the moment, I hope you can manage squeeze enough time in to take proper care of yourself in the middle of all this.
Good grief! Poor you.
However, wheels are turning. Turning wheels are a GOOD thing even if you are struggling to keep up.
Honking for you.
Got to dash, boys to pick up, but [hugs] and
Given up now, can't find the right person, but have done phone numbers that may
or may not be direct numbers to the secretary that I spoke to earlier that was going to pull his notes and tried to ring me back.
I have a stonking headache from being on the phone ALL. JEFFING. DAY. And I still don't have the results so I'm going to have a nail biting night waiting until they start taking phone calls at 9.30am tomorrow!
I have to update my ex on all this later but am exhausted right now, will try to have a quick nap as DS3 has finally dropped off. (He's been awake solidly since 5am on just 2.5 hrs sleep)
Moose - at tine to be taking care of myself right now. I didn't get time to get through to transitional services for DD today, so despite me having a school run to do at 9am and my first appointment in town (40 Mon bus journey) being at 10.30am, I need to phone 2 different community Paed numbers
no chance it'll be the right one first time, I'm not that lucky! AND transitional services.
I still have to find my photo for my bus pass form so I can hand that in while I'm at the council office, plus full in my form for severe disablement allowance on my IS so that I can drop that in the postbox, write out a request for statutory assessment for DS3 as I only have 2 weeks to send it in as they are moving offices, and, AND, I REALLY need to make a start on DS3's DLA application form...
One day I will look back on this time and see it as the start of a new era for me where I HAVE the answers and can access more support for the DC's because if that.
It's just this month is turning into a whirlwind of a month, and I'm feeling like NONE of the DC's are getting the TIME with me that they need. Feel pulled in all directions tbh.
I know, I know, it's not
possible easy, but you still need to take care of yourself as best you can - you can't help anyone if you collapse under the strain of it all. <speaks from bitter experience> <tells grandma to suck eggs> <wags finger>
Aw Couthy, I'm sorry. I just know what a bad effect stress can have on you and having just spent the weekend in bed and today under a duvet on the sofa myself ...
I don't know what to say...
Just want to show my support...
DS2 has come down with the viral lurgy that's going round the school. It's Ex's day off, and he's having DS3, so as my appointment tomorrow isn't able to be rearranged (they've cleared one member of staff's diary just to help me!), I didn't think it would be that much to ask him to look after his ill 9yo too.
Oh god, you'd have thought the world was about to fucking end!
Apparently he made arrangements to have a friend home and help him paint his new room. Yes he was going to take DS3 (wtf paint+hyperactive toddler, yeah, that's a sensible mix...) but because I told him I needed him to stay here with DS2 as he's not well enough to travel, he went off on one!
DS2 is 'always' getting ill - erm, yeah, he's on a massive dose of steroid inhalers, larger than he should be but it's the first time his asthma has EVER been under control. More steroids = less immune system = more bugs and colds. DUH!
(Ex should know, he's asthmatic himself!)
Next "He's having too much time off school" - erm, his attendance is WELL above where they call the EWO in, actually, knobwad. Not that you'd know, as it would be beyond you to check with the school like I do...
Then "Oh, what you have to do always seems more important than what I have to do". Yes, dickface, I think getting help with 4 X Medical needs forms for housing filled in TO GET THE BIGGER HOUSE YOU keep moaning that I don't have yet IS more important than a bit of bastarding painting.
Then he had the ducking CHEEK to tell me that it was 'convenient' how one of the DC's or me always (said in sarky voice and I could SEE the Eyeroll despite being on the phone...) gets ill when HE has something planned.
I'm afraid I did lose it slightly, and told him in a voice positively dripping with sarcasm that "Of course, I ordered DS2 to get ill on a day that was as inconvenient for me as it is for you, didn't I?!"
All this DESPITE the fact that we arranged that on the week he has Tuesday & Thursday off (fortnightly rota) I could book appointments on the Tuesday and him on the Thursday and if for any reason he couldn't do the Tuesday, he was to give me a minimum of a week's notice, preferably two.
He's also left it too late
deliberately a bloody gain to book half term next week off, despite promising me that he would take DS2 & DS3 for half the week to give me a much needed rest. He does this every time. He keeps complaining that he never gets a week off just for him.
I did have to prevent myself from embedding a carving knife in his head at that point. Instead I merely hissed "well that's what you get when you have two DC's with SN's, and in fact, what you get when you have two DC's full stop, isn't it..." Whilst refraining from adding 'shit for brains' to the end of that sentence.
(It's a good job he's NOT here tonight because I might have a chance to stop myself from wanting to rip his head off and shit down his neck by the morning...)
Can you tell I'm a teensy bit stressed with my Ex tonight?!
Why is he your ex, Couthy?
Here, I've opened some of this You can have as much of the virtual stuff as you like, then make good use of the bottle afterwards.
Maybe just a little stressed with the ex... Just a teeny bit
I think you did well!
What an arsehole!
Good luck tomorrow, I will be thinking of you....
I wonder, ouryve...
Is it awful to say that my first thought for the empty wine bottle was to ram it somewhere on my ex where the sun doesn't shine?
I need to get on with my forms, but DS3 is currently running around the front room from one end to the other. I've escaped to the kitchen for a quick fag before DD goes to bed...
She's running 15 mins late but oh well
I have to think it and vent on here - he doesn't get it from MY perspective. Doesn't help that he's got Autism too...
I might also be a leetle bit less patient than usual as I'm having the period from hell this week...
And to top it off, DS3 has learnt to UNSCREW the flipping stairgate. They are the pressure fit ones. How am I meant to keep him safe now?
My thoughts are usually less convoluted and more brutal, Couthy
Are you allowed the stairgates you can screw into the frame? It's not impossible to make good after you take them down (we had to do that without ours when the boys wrecked the original lot of holes)
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