DX or no DX??

[claw3]

Apologises, i really do seem to be taking over the SN section lately. New to this and have soooo many questions!

Just back from OT appointment and have just been told that Modulation Disorder is NOT a diagnosis in this Country (in America it is). In this Country it is regarded just as 'a problem'.

OT has told me this shouldnt be a problem at school etc, as each child is dealt with based on needs. Ds's is currently on the special needs register as action +, although he doesnt have an IEP in place at the moment.

Is have no DX going to affect us?

I think a dx can be ^useful* but it's not essential. The OT is right in saying that children should be helped according to their actual needs rather than because they have a piece of paper saying that "X's needs are caused by [name of condition]".

In any case, the chances are that no two children with the dx of Modulation Disorder are going to need exactly the same help. My two boys both have sensory issues as part of ASD. They have the same dx but completely different needs.

useful

Agree with coppertop (I invariably do ) but the only thing I would add is that if school (or you) were at some stage in the future to take the view that his needs cannot be met adequately by SchoolActionPlus, then to get more help he would probably need a Statement of Special Educational Needs - and that is easier to get if you have a DX (although still not guaranteed by any means).

Coppertop yay - Im so glad you are still posting. I dont know whether you remember me, i only starting posting again recently. But over a year a go now it must be, you basically diagnosed that my son had sensory issues, when the 'experts' were looking at my son's not eating as him being defiant.

Anyhow, i agree in a ideal world children should be helped according to their actual needs, but does this actually happen without a dx. That was my main concern.

Welcome back, Claw.

Yes I'm still here and still posting.

My experience of the pre-dx stage is mainly during the pre-school years but I found that the help was there even before the dx. Ds2's Paed wanted to adopt a wait-and-see approach before making his dx official. During that year of waiting ds2 had IEPs, help from the OT, visits to the Child Psych, SALT etc.

Anecdotally I know of children at school who have help and IEPs without any official dx at all.

I don't have experience of the statementing stage but think SixSpot is right about it helping at that stage.

Would it be ok if I asked a question here, without wanting to hijack.

But who puts the Ieps in place Is this something that the Comm Paed would do, or is it the ed physc, Im getting myself really wound up about who should be helping my ds.

sorry hijack over

Usually it would be the school SENCO (Special Needs Co-Ordinator). They should talk to the teacher (and ideally the parents too) to decide:

• which targets to set

• how the targets will be worked towards

• what time scale will be used

• how they will measure success

The parent (and the child if they are old enough) then sign the IEP.

The SENCO may also take advice from any outside agencies involved.

he he coppertop, you are stalking me.

This is what I thought, but kind of gets my goat. When we first had a meeting with teacher, HT and senco. They didnt know what the procedure was and didnt say that it was upto them to put the Iep in place, makes me feel sick now to be honest.

I have had months of anxiety over ds falling, you will prob remember me looking for a helmet, which I finally got of a fellow mums netter. So all this time they could have put things in place to help us and they didnt. Even though they have wrote a pretty full on report to the Pead asking for urgent one to one help for him.

Oh god sorry Im livid now, I have been sat patiently waiting grrrrrrr

J has no dx when he first got a Statement. OK, I did have a major fight to get the statement process going, but his needs meant that he got the Statement without the dx. He got a dx of ADHD (expected) a year after he started school and then the autism dx the following year (totally unexpected).

The first dx made no difference to his already-in-place Statement: the LEA still refused to up the hours to full-time even with everyone involved saying he needed it, but the second dx, the autism, suddenly seemed to open doors and the full-time happened and the help from Social Services Disability team happened.

So my experience makes me think that a dx isn't necessary for getting help but a dx of what (in their words) is a 'complex disability' does seem to carry some weight when it comes to pushing for more.

Oh god Claw, I have totally hijacked.

Thanks Givemesleeporgivemechocalate. I just feel the school have let us down, lets hope the community paed doesnt (you can put hope eh)

Claw my ds has no dx, but still gets middle rate dla, has one to one support at ms pre-school nursery (since January 2008), regular visits from salt and early years support teacher twice a week amongst other things (ASD traits, language disorder/delay) - I don't think atm he would get any more help with a dx, but I could be wrong!

I think if you are happy with the support you are getting then a dx might not be crucial, but if you are fighting to get your ds's needs met a dx (as Coppertop said) is useful.

We got all our support in place pre-diagnosis (autism and epilepsy). Middle rate DLA and statement. I am interested to see if having a diagnosis will affect his statement review in the summer though!

Help should be based on needs, but sometimes I think the diagnosis does act a a signpost and you are taken more seriously. Certainly it can help to get the sceptics on board.

Morning Ladies - Sorry had a busy weekend, unable to post. I hadnt gone off in a huff because of hijack

Interesting to read that lots of people seem to have got statements before DX. Do you think this is because whatever their child was suspected of having is already recognised as a DX though?

At the moment my ds is on the action plus register. Although we havent seen much action as yet, he only started school in Jan and they are still evaluating his needs. Because Modulation Disorder is not a recognised DX, im trying to prepare myself for the fight, which i am anticipating!