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Here are some suggested organisations that offer expert advice on special needs.

Original poster

latest installment in the adventures of smug

48 replies

smugtandemfeeder · 11/12/2011 13:01

DS has been assessed by the NHS now. 5 weeks of assessments. 5 weeks of every test they could think of. 5 weeks of intrusion in our home and judgements and them terrifying the life out of us by suggesting there may be a child protection issue as DS is so violent. 5 weeks of being spoken to as though I am completely stupid.

We have just had the initial review meeting and they are not going to give DS a diagnosis. The best they can come up with is "genetic predisposition to mental health problems" and "emotional problems". They have not been at all clear with their findings other than that they dont have many. They say they have ruled out autism. They are not open to PDA. They will not diagnose mental health problems in a 3.5 year old.

We applied for a statement - they said he need to be on school action, no more than that.

We are so confused. When we tell them how hard life is they seem to think we are just not coping with something we should be coping with and just need to play more with DS and rebuild a positive relationship.

They are going to put in place new stategies for us which involve playing more with DS 1:1, not doing anything like time out or anything negative. They chuck about words like "relational" and "melting pot" referring to us and our ds.

We have the official meeting next week to go through their report properly with other people involved such as preschool. DH doenst even want to come with me after the total pointlessness of what they have said so far.

I have no idea what to do now or how to play this. Do we just smile and say thank you and then go home with nothing? I cant exactly change their mind.

OP posts:
IndigoBell · 11/12/2011 13:08

:(

Original poster
smugtandemfeeder · 11/12/2011 13:19

thanks indigo. I do feel sad.

OP posts:
unpa1dcar3r · 11/12/2011 13:21

Huh????

Sounds a bit like when the doc says you have a virus. What they mean is they have no bloody idea what it is...

Hugs Smug, such a difficult time for you all Sad

Original poster
smugtandemfeeder · 11/12/2011 13:29

Totally crap isnt it. I made it very clear I have no idea what they are saying about DS and they just look at me with a patronising pitying look. DH was there, he had no idea what they were talking about. Just waffly crap. Waffly waffly crap.

They also are writing us a letter - like a formal warning - about putting DS in the garden for time out when he smashes the house up and beats us up. They said we cant even take him into a seperate room when he has a melt down, we have to try to teach him to take deep breaths where he is.

I just want them to go away now.

OP posts:
Original poster
smugtandemfeeder · 11/12/2011 13:33

They said perhaps it is developmental and he will grow out of it. He has fine motor skill problems which they assessed as quite severe but are basically saying that he will strengthen these with practice and that we havent practiced enough (because he gets so frustrated and has a meltdown).

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IndigoBell · 11/12/2011 13:37

I think you just have to keep believing he does have ASD / PDA and ignore them as best you can.

And hope in a year or two you'll be able to get him a dx :(

But I don't know what you can do about them intruding into your life and dictating parenting to you.

It's all absolutely outrageous.

Really sorry you have to go through this as well as DSs PDA, which sounds very hard to deal with.

IsabelOSullivan · 11/12/2011 13:43

REally sorry to hear you are having problems. They sound similar-ish to ours. We have a 3.5 yr old with a 'genetic predisposition to mental health problems' with some PDA type symptoms. We had an assessment for autism this week and we've been refered to CAHMS. I am not expecting a dX of any kind, at least not yet. I think the difference between me and you is that I am not expecting anything from the NHS or the system more generally. Most of the people we've seen are not particularly bright or knowledgable, though they are sympathetic. I'm just going through the motions because I feel I should and because we may qualify for help later on.

sorry that's no help.

I wish child mental health were taken more seriously, especialy for young children.

IsabelOSullivan · 11/12/2011 13:46

I don't mention PDA to any of the professionals because I don't want to be labelled as a 'loon' (and let's face it that's going to be a risk!)

Original poster
smugtandemfeeder · 11/12/2011 14:14

It might sound strange but I actually feel quite cross with DS now. If they cant find anything properly wrong with him that I can google and ask mumsnet and research, if its that obscure that they arent really sure, if DS is only like he is with us, if they think its our fault, then i feel cross with DS for being so difficult.

Theres no let up what so ever, DS just keeps talking and talking and having meltdowns, keeps smashing things up, keeps hitting, keeps refusing to put clothes on. And I have no answers. None.

OP posts:
IsabelOSullivan · 11/12/2011 14:26

in an ideal world you would have free help at home, play therapy or similar, paid for by the state or by a charity.

i think it is possible to do early intervention for mental health problems but the system is set up so that you have to actually go mad before you can qualify for help.

I really feel for you.

If they've made you feel cross with your son then the system is not working.

Stop trying to find answers and look at the practicalities of what helps.

Original poster
smugtandemfeeder · 11/12/2011 14:32

Hes just pulled the f*ing christmas tree over. Baubles everywhere. All because I was ignoring his 2000th "MUM" of the day. Im going completely insane.

OP posts:
Original poster
smugtandemfeeder · 11/12/2011 14:34

weak Smile

OP posts:
IsabelOSullivan · 11/12/2011 14:40

Christmas tree? What were you thinking?!!

I am in the fortunate position of having an NT older child (DS1 age 5) who is a model child. DS2 copies a lot of what he does. My parenting has never been questioned.

because doctors suspect something genetic it seems fairly clear to me that DS1 has not got the gene (or is a non-symptomatic carrier, as I am) and DS2 sadly has.

Triggles · 11/12/2011 16:30

Does your DS go to nursery? How do he behave there?

Sorry if you've answered this already, I didn't see. I am dealing with two children at the moment, and they've both apparently forgotten the meaning of the word "no." Hmm

Triggles · 11/12/2011 16:30

oh lord... how do he behave? I cannot believe I typed that.

correction "how does he behave..."

unbelievable. Hmm my brain is obviously toast today Grin

Original poster
smugtandemfeeder · 11/12/2011 17:38

DS do behaves like an angel at school Grin

Ultra compliant. A delight to be around.

All they have said is that he is very slow to warm up, slow to communicate with his peers.

OP posts:
Triggles · 11/12/2011 18:25

odd. I'll admit DS2 is quite happy to be all over the place literally, well, all over the place. Grin

I suppose they see good behaviour at school and not at home, so their automatic response is to assume it's the parents and not the child. Hmm But "it ain't necessarily so...."

IndigoBell · 11/12/2011 18:31

My DS2 is an angel at school, and quite hard work at home.

I know I've said this on a thousand threads, so please forgive me, but what has really helped DS2s behaviour at home is zinc and magnesium Blush

Apart from that I have no advice, but lots of sympathy.

intothewest · 11/12/2011 18:43

My DS's behaviour is also good at school and the major troubles are at home.

This is because he IS on the spectrum and likes the routines etc. He then comes home and 'lets it all out'. I think this is quite common and I don't understand why the people around you are not accepting it. Sad

DS has finally got an ASD diagnosis at the age of 8 .

I am off to buy zinc and magnesium tomorrow INDIGO Smile

IsabelOSullivan · 11/12/2011 18:44

I've just bought some Epsom Salts for the bath.

Is that what you mean Indigo?

waitingforgodot · 11/12/2011 18:59

Indigo, can you tell me more about Zinc and Magnesium?
Also Smug-do you have an advocate? Someone who can support you and fight your corner? I know its tough but even asking them for strategies/help for all the things you are going through. Don't let them scare you

OnTheBen10DaysofChristmas · 11/12/2011 19:14

Smug :( Nothing to add but am sad for you.

IndigoBell · 11/12/2011 19:41

Epsom Salts do contain magnesium - but I have found out they don't contain enough.

My kids are now on Osteocare ( + Omega ) and a multivitamin.

There has been loads of different studies suggesting both that our kids are likely to be deficient in those 3 things (more so than the general population), and that the supplements help in all sorts of ways.

I recommend that you just try them, and then decide for yourself :)

IsabelOSullivan · 11/12/2011 20:09

sorry to go off on a tangent smug.

What do those Osteocare tablets taste like Indigo!!

isn't there something about Calcium inhibiting absorption of something else? Magnesium?

coff33pot · 11/12/2011 22:09

Smug is there any way you can save up and go private? To put your mind at rest once and for all.?

Try not to be cross with your DS. I did the same thing when they indicated "DS" was just "strong willed" They tried to put it down to our parenting but the GP told them not to be rediculous seeing as I had two others very much older with no issues. I was lucky as it could well have gone the other way (still get the looks from some of the teachers though)

I would ignore them to be honest as best you can. Nod in the right directions on the right cue of course :)

Start the day tomorrow as a new clean slate as if you are starting again. Try the suppliments and see if they help. Research PDA and any stratagies that will help and have a go at those. And keep asking on here :) As it looks like the only ones that are going to help your DS are you and DH for the time being.

By the time he is in "big school" and more demands are put on him there for learning and with his peers he will probably show his issues at school too. Keep going with a diary in the meantime.

I am really sorry that you have been s**t on from a great height :(