Here some suggested organisations that offer expert advice on SN.
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.
Crikey, Couthy I honestly don't know how you do so much, hoping you get the answers and results you need
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)
I could, but seeing as I can't afford the stairgates (was given these), as I need about 6 of them, I can't afford to.
I have to have one on the back door, the front room doorway, the bedroom doorway, top and bottom of the stairs AND one across the downstairs loo.
6 is a bit many to afford.
FFS. Is there any way I can stop him now he has learnt this?!
Still no answer, but SN HV is coming out tomorrow, and will apparently be bringing the results with her
hopefully they said, and she will tell me. At least then I'll have the answers.
They said they are going to do that rather than tell me over the telephone so that I have somebody to discuss the results with.
To me, that sounds like they HAVE found something - it wouldn't be an issue me not having anyone here to 'discuss the results with' if there was nothing chromosomally 'wrong', would it?
So I'm assuming I will get some answers tomorrow as to what is causing DS3's issues. (And by default, what is causing the same issues in DD and DS2.)
Once I have DS3's results, I can ask for a referral to a geneticist and get DD and DS2 tested, so they have that definitive answer on their records too.
Nervous as hell, but will be relieving and upsetting all at once, I think.
Just wanted to chip in and say that I have a couple of spare stairgates if you need them, still haven't got rid of them from dd. One is the kind you fix to the wall, the other is a pressure one. If you wanted them I'm sure I could arrange for them to be sent to you - whereabouts are you? I'm in London. Any good?
Hope you get answers from the paed soon, too.
It's the pressure fit ones he can unscrew. (!)
He just unscrews the bolt bits at the side.
Nerves kicking off, SN HV now 15 mins late for appointment!!
Hope she arrived. How did it go?
Thinking about you merry, hope she turned up.
Your ex never gets a week of just for him?
What parent does?
Thinking of you. Hope you get whatever it is that is the 'better' news.
Also thinking of you this morning, hope you got some answers and you are ok.
FFS. Right, appointment went ok-ish.
She put me & ex under microscope, looked at the way we interact with DS3
probably so she can blame us!!.
Saw the pretend play he has now, seemed to ignore the fact that I have been working like a dog to get him to 'get' pretend play, seemingly ignored the fact that just 3 months ago he had NO pretend play.
Saw that he makes reasonable eye contact with her (of course he did, she wears glasses and he's obsessed with anyone in glasses, he's looking at the effing GLASSES not the person, if she took them off and put them on the table he'd show no more interest in her than he would a bloody door), seemingly ignored the fact that even the Paed was concerned about his lack of the contact just 3 months ago.
When she asked about my concerns, I mentioned the tiptoe walking, and she said "Well I haven't seen that", when he was walking right past her, backwards and forwards on his tiptoes. She DID see it 'a bit' once I had pointed it out.
She asked us about our concerns, went through our 'list'. She took notes.
She noted that there is a strong family history of these same issues.
Assessment is in May, for Autism, under the multidisciplinary team - 4 weeks of assessments in a group with 3 other DC's with suspected Autistic Spectrum Disorders.
NOW...the genetic test results...
That I was told yesterday she would bring with her...
She has told me that they are back, but that she cannot discuss them with me, and we need to see the 'doctor' so that the doctor can explain the results.
(I just want his effing karotype so that I can get DD and DS2 tested)
His next Paed appointment is in APRIL. I'm not waiting till then to hind out - that would mean that every professional would have the information about him over two months before me and his dad do. Surely that's not right?!
I'm going nuts here, because they won't test DD or DS2 until I have DS3's karotype, and whatever is 'wrong' chromosomally with DS3 is what's 'wrong' chromosomally with DD and DS2.
I NEED an answer soon - DD is almost 15, and I want answers long before there is ANY chance of her falling pregnant.
I've been 15 myself - in fact at just 15y10m, I was bloody pg with DD, I need these answers.
Why are they making me wait so long, and is there any way I can make the Paed (or geneticist if that is who they think we need to see) give us the results before April?
The SN HV obviously seemed to know the results of his genetic microarray tests, but won't effing tell me or his dad. We are his PARENTS. How do I make them tell us?!
She's also told me that they are going to have to do a risk assessment to see whether I can continue to take DS3 into the sensory room due to my epilepsy. They may say no. Which would mean DS3 missing out because of MY disability. But the SN HV was very quick to
repeatedly point out that it would be to 'protect ME' , definitely not to discriminate against me.
I make a risk assessment on the likelyhood of me having a seizure in the sensory room every time before I go in. Sometimes I will sometimes I won't. They don't ever turn on the strobe lights when I go in there, and I'm fine with the fibre optics and the illusion box.
I kept it together, was well spoken and mostly knowledgable during the assessment, until the stuff about DS3 possibly not being able to to into the sensory room if their risk assessment seems it to be too risky. Then I started sniffling and having to hold back tears.
I don't give a shit if I miss out on something because of my epilepsy, like swimming. I DO care if DS3 misses out on going in the sensory room because of my epilepsy.
And it doesn't matter how many times the SN HV SAYS it's not to he discriminatory, it doesn't make it FEEL any less discriminatory!!
Argh! Fluffed it at the last hurdle because of my hang up about people not letting ME make my own risk assessments and decisions wrt my epilepsy.
And does anyone knowledgable have any idea how I can get then to tell me the genetic test results sooner than the end of April?
If I don't get them till the end of April, it will be 6 months minimum before I get DD's back, by which point, she will be into Y11. Which won't help with getting a college to take her, if I don't have a full diagnosis first.
Don't beat yourself up about getting upset about their stupid risk assessments it isn't at all surprising and think how much you did deal with before then.
I don't have any experience re getting Ds's results but there must surely be a way. Ask for an earlier paed appointment? GP surely they will have a copy?
PALS if you don't get anywhere?
Ex found the assessment difficult, but he has Autism himself, and felt like he was under a microscope. He had a bit of a panic attack/ meltdown in the kitchen after she left.
But he did ok during the assessment.
The SN HV also noted his lack of speech, and how 'severe' his speech delay is. She saw him using the odd word, some Makaton, some gestures, and a lot of 'putting' things in our hands. So at least she can clearly see the speech delay.
Can you call your GP and see if they have a copy of the results? If so then make an appointment and go in person and insist that the GP give them to you. If they don't have them then ask the GP to request them so that you can then make an appointment to go in and get them.
You can put in a subject access request for the information and include a request to see everything they have held on you and your ds.
You can phone them today and tell them the information you want by the end of the week or you will do this (a SDR is a pita logistically for them).
Also, send a not to the HV asap saying that you had agreed to her visit on the basis that you believed she was coming to disclose and discuss results and since she didn't do that please can she tell you what the blimmin 'eck the purpose of her visit was. (This will cover your tracks later and make sure she's more careful about undermining you).
Update : Paed phoned and gave me basic results over the phone. She will send out a letter and his karotype soon. I won't get a copy of the full report
because they think all parents are morons without a subject request, which I will ponder if I want to do.
Results weren't what I was hoping for.
Nothing significant found.
So still no closer to an answer.
I'm in touch with SWAN UK, I'm going to speak to someone there tomorrow. They are looking to possibly get my family under the DDD study. Maybe they will be able to find something?
Feels a bit like I'm clutching at straws and that all the professionals are going to be thinking I'm bloody Munchausen's or something.
I just CAN'T see how 3 out of 4 of my DC's can be affected with the sane issues, how me and my Dbro can have the sane issues, how my Mother can have the sane issues, WITHOUT it being a genetic problem.
So WHY WHY WHY can't they find anything?!
It's driving me insane. I just want some answers.
But if they can't find anything significant on DS3's Microarray tests, then how else will they find anything?
I need to do more research to see if there are any other tests that are even more detailed than Microarray.
But I'm not sure that there is.
I feel so let down.
Star - I knew the SN HV was coming to do an initial assessment, telling me the genetic results was meant to be in addition to that, but the SN HV said that her secretary should never have said that. I hope the secretary didn't get into trouble.
Oh Couthy, I was really hoping you would have some answers or at least a lead.
I think the problem is most likely that they haven't identified all the genetic disorders yet, so if your family fall into one of the unknown categories they just don't have the answers - yet.
At least wheels are in motion for the ASD assessment now - I've not heard of group assessments before though.
Sorry you didn't get the answers you needed.
Message withdrawn at poster's request.
They do the group assessments in our PCT but only for DC's that are under preschool age. It's a multidisciplinary approach, and it lets them see how well (or not!) the toddlers interact etc. seems to work better than the old system we had here, which was that nobody ever really got a formal diagnosis, just the Paed telling then they were 'on the Spectrum', handing the parents some leaflets, and sending them on their way!
Message withdrawn at poster's request.
Ah, that'll be why it's different then. Ds1 was nearly 9 when he had his multi-dip assessment.
Mind you, we also just got a load of out-of-date leaflets for charities, which for the most part were closing up shop and that was that.
Moose - that's all I got with DD and DS2. But yes, new Paed, new SN HV, things are being 'shaken up' a bit here.
Tbh, though, it seems to be for the better. Everything has moved so much quicker for DS3 than it ever did with DD or DS2.
Spoke to SWAN UK, getting some advice there, there ARE further tests that can be done, that are more detailed than the microarray tests.
And even the Paed said that given the family history, there HAS to be 'something' there, we just haven't FOUND it yet...
The DDD study is seriously delayed. DD1 was one of the first to be included in our area - 18 centres, 500 children per centre initially. The first 100 from each centre got an extra swanky test on top of the usual swanky tests the DDD is doing.
DD1's samples went off almost exactly 18 months ago, in August 2011. I phoned genetics last week and was told that very few results have come through yet, because they had far more candidates than they expected and it's taking far longer to analyse than they expected.
So, while it may get a result in time, it's not going to get you anywhere fast.
DS3 has an appointment with the Preschool specialist teacher so that she can do an assessment to determine how much support DS3 will need at preschool for his statement.
So I am assuming that when the preschool panel met the first time, they decided that he will need a statement BEFORE he starts preschool, they are just deciding how much
or little help to give him.
I'm hoping that he will get 1-2-1, as then he can go to any preschool.
DS2 : I now have the orthopaedic consultant's letter.
It states that he scores 8/9 on the Beighton scale, (would be 9/9 if he didn't have the kyphosis!), has kyphosis as a result of his Hypermobility syndrome, needs Physio from the head of musculoskeletal physiotherapy, orthotic inserts in his shoes, and probably OT as well.
So basically he is being re-referred back to all the departments that discharged him when he was 6yo, that shouldn't have discharged him.
I have got fed up with the unwillingness of my local GP to refer on to rheumatology, and have booked a PRIVATE appointment (costing £300!!) with Prof G for him in May. Meaning I have time to save up for it!
Bye bye to my DLA for a while!!
I'm hoping he (and therefore the rest of us) get a diagnosis of EDS.
Been to GP today, if I write a list of my concerns about DD and DS2, he will refer them on for ADOS testing.
He's not happy about sending DS1 for testing - but I think that he may change his mind when he gets the letter from DS1's school that he has asked me to ask for.
And HE told me to film DD when she has meltdowns.
Couthy so, some forward steps, which is good news. But why won't the GP refer to rheumatology? Seems bizarre... Could the ortho consultant refer to rheumatology instead?
Sounds like positive moves afoot though, Merry - well done! I spoke to the research nurse for my local DDD centre today. She said they may take another year before the first results are out
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