Descriptions can be upsetting

[lagaanisace]

The SENCO from DS2's school-to-be came for a home visit today. She was really good, saying she's working hard to secure 1:1 whatever the outcome of statutory assessment and that he can be part-time for the time being (he'll start in January), but she described his needs as 'severe'. I'm sure this sounds very silly, but I'd never viewed it that way before and it's turned me inside out a bit.

Sorry, I know lots of you cope with much more than me, but it's just that sometimes the use of just one word in reference to your child can really mess you up, can't it?

[mumgoingcrazy]

It is gutting. When DD2 and I are on our own I kid myself that she's doing just fine and she'll prove them all wrong. Then one of her therapists will describe her needs as 'very complex' or 'severe' and it's like being punched in the stomach.

[vjg13]

I know just what you mean, I still find it very hard seeing 'severe/complex needs' written down and she is 11

It doesn't match up to the child I see in front of me.

[lagaanisace]

Yeah, "It doesn't match up to the child I see in front of me" snap.

But he has no sense of danger or of his impact on others, which is going to be a problem from a teachers point of view, I guess.

You're all very kind to bother replying when you all have your own issues .

[Spinosaur]

Hello,

I find it very difficult to read all the official language on reports etc. but I try to tell myself that this is part of the thing that has to be done to get the help that is needed because if you, as a parent/carer uses the language we might use among friends then other official groups might think they don't have to respond and offer help. I found it really hard when doctors talked about my DS as having severe delay etc but if they hadn't we might not have got our statement. Sorry if I haven't made myself clear, it is Friday night!

[lagaanisace]

Spinosaur - perfectly clear, and you're right. As we try to get DS2's statement, I must remember that.

[drlove8]

reports are always hard to read.Makes it seem more real .

[Widemouthfrog]

It wasn't one word, but a phrase from our SENCO that hit me hard. After a long review meeting about DS, he said 'he had to consider the stress and mental health of the staff working with DS, and was putting support in place for them'.
It made me realise just how demanding my DS can be in school .
Other posters are right though - if things are presented from a positive angle, then appropriate support may not be given. Upsetting words have to be used.

[juliaw]

They use phrases which tick boxes - complex and severe is the phrase used in the Code of Practice for statementing for example. I think my son is quite easy going, very bright, loving and affectionate but I scored him on the latest diagnostic criteria being suggested in USA and he came out as moderately severe ASD as he still ticks enough of the crucial boxes having traits across the board. However for statementing he isn't considered complex and severe because his IQ is probably not impaired; which just goes to show you can be severe for one criteria but not for another. They get so caught up in the jargon they forget they are talking to a parent. This week the SEN officer told me they had no obligation to my child until he was 3, not exactly the most tactful way of putting it when I have spent the last 6 months coming to terms with a drastic regression and a diagnosis of autism and have been worried sick that I am wasting a golden window of opportunity for early intervention. They are probably told to use certain phrases consistently. I think many autism books are as bad, a lot of what I read at the outset made be absolutely terrified but actually apart from the shock DS is still a lovely placid boy, its like having a much younger child with little speech and some quirks sure, but not an alien from another planet as some books like to describe it. Don't forget you are the only real expert on your child.

[daisy5678]

Don't let them fool you, julia. J's IQ is not impaired but he is considered complex and severe by the LEA and by SS because of his behaviour and the way his autism make him functionally impaired.

Lagaanisace, it does hit you hard, but, like others have said, the vocab is sometimes extreme to signal that help is needed.

[lagaanisace]

widemouthfrog - that must have hurt! . I hope he got the support
he needed!

julia - no obligation? That can't be right! You're right about early intervention, I would feel that way too. I think they need to review that!

[troutpout]

lagaanisace so true
ds is 12 and i still am shocked like that sometimes. The other day i looked at the funding levels and their descriptions on the LEA website to see how they actually decided the levels. The description of his level still left me with a horrible feeling...even though what it said described him very well.

[Widemouthfrog]

lagaanisace - DS is very well supported in school. They are fabulous with him. The comment struck home the impact this has on the staff who provide it though.

[lagaanisace]

You're all so right. I know it sounds twee but as I was writing the letter to support his nursery's request for a statement and having to outline his limitations, I just wished I was writing a letter about how sweet he is, and how much he loves music and animals. I know that sounds impractically sentimental, but I think it's natural maternal instinct to feel sad at having to highlight your child's weaknesses. It goes against the grain, doesn't it?

widemouthfrog - did that description make you feel overwhelmed about what you have to cope with, though? I'm really glad it's going well for him at school; it must give you some peace of mind.

[Widemouthfrog]

The comment hurt because I understood exactly what the SENCO was saying. Ds's TAs never let on how he can affect them, as I guess they are trying to protect me.
Yes, I am frequently overwhelmed, and I guess this statement acknowledged indirectly what I deal with, even though I can't/wont always acknowledge this myself!

Hope that makes sense

[Kimi]

To secure all the help that is needed sometimes it has to be exaggerated a tad, however hurtful it seem.

I sometimes read all the stuff for DS1s statement and think "have they met my child"? as it seems a world away from who he is, but when all is said and done it gets him the help he needs

[PeachyTheRiverParrettHarlot]

It's all irrelevant compared to the child- just wor4ds.

On ds1's statement it mentions 'complex learning difficulties'- now I see those as afecting kids with PMLD, but it referred to these as for his condition- which I would agree with: his intelligence is high but affected by LD yes.

DS3 I haven't got a clue whree to aplce him. I have trwo definitions of severe in my head- the one that makes the most difference in real terms is putrely absed on whether they will live an independent life. DS3 will not, so is. But he doesn't fit another description I heard on ehre of not walking or talking. He can't apply the talking to real life sits though and hads a very limited and problemtaic attention span so he rpesents as severe.

But it is just words: your child can do what they can do and we love them and thats all.

[AttilaTheMeerkat]

The comment that Spinosaur wrote below is exactly how I felt and to some extent still feel (especially the other day at the CDC):-

"I find it very difficult to read all the official language on reports etc. but I try to tell myself that this is part of the thing that has to be done to get the help that is needed because if you, as a parent/carer uses the language we might use among friends then other official groups might think they don't have to respond and offer help. I found it really hard when doctors talked about my DS as having severe delay etc but if they hadn't we might not have got our statement".