Parents help

[Fluffanstuff]

Very rarely am I put in the situation , and stuck for ideas so Im turning it on its head. Be ruthless and honest because I need help.

I work within SN and currently working with a family . They are very hard to engage and I have to approach the fact that I have reasonable evidence to suggest their child has ASD.... I cant give out anymore detail but

They are very very hard to work with never in my time and bounty of experience have I come across a family like this.

Please , as a parent what would really tick you off if I approached this with you and what would make you want to get on board. Im just seeing if anyone comes up with something I hadn't considered.

I've got plenty of support avenues to persue work wise as alternatives but lets face it who knows better than someone who has been there and done it . I can see it from both sides but .....any suggestions .

Things I have done so far are :

1. Makaton in place already with all children within the setting.
2. PECS In place - but not quite there yet , plan is to continue and support
3. Photo labels in place in the setting already.
4. Hearing test done by prof. no issues highlighted.
5. Soft area created for when she goes into 'shut down' ..rest of kids can use it as a snug.
6. Photos of the setting / routines put into a book for child at home.
7. Asked family for a list of words they use at home that might not be the same here.
8. Good induction process to gain as much info about Their situation as poss.

Were free flow / free play so theres very little structure for her to deal with and lots of opportunity for self selected play , which she will do with a couple of toys.

Perhaps I am not explaining myself well , I'm not really pushing the family into a referall they have been given the options and explained the benefits to them and child , concerns and the process's that would happen, I just wanted to see if anyone had any other tacts that could be deployed to help this child.

The whole asd thing is just me and my team at the moment , the thought of dx isnt something we have introduced to the family , we havnt got enough evidence and its a long way of.

For the poster who said about not being able to emigrate to certain countries , thankyou this is exzactly the kind of considerations I was looking for because this is a sitauation they may well find themselves in and isn't something we get taught or told about !

It sounds like you are doing lots of useful stuff. I honestly don't really see what you are asking. If you think you are doing everything you can and the parents care for their child, what is your question?

I was asking for practical considerations like zzzzz posted on the previous page , things that as a parent you might know that I wouldn't as a practitioner that could effect the parents stance on things. Like holiday insurance etc.

The toileting is something I have discussed with parents ,I printed off the ERIC guide as in the past it has proved very useful for parents with children with AN ..whatever they may be. This is their eldest child and they have no family in the country , or friends etc. All things I have taken into consideration with dealing with the family.

We have routine songs anyway .

She is a bright cookie , Im well aware.

Where poss I have done lots of intensive interaction , get others to join in I very much promote the whole 'sometimes inclusion can be so inclusive it becomes exclusive' attitude so if I do one thing for her all the children have the same opportunity. There all used to me being slightly strange ...better embarrassing than boring !

The thing that worries me is that the family arn't happy. This is the issue . They can't take this child out of the house anymore . And are stuck and alone. Apart from us they dont Know any other people in this country. Apart from dad has his tutor for his studies ... thats it !

They are intelligent people and unfortunatly our childrens centres dont work well in this county, They went before coming to look at us , and hated it , the staff spoke down to them , couldnt answer the parents questions (of which there tend to be many !) And they just didnt want to send their child there ...well within there rights and dont blame them. But thats where all the local groups etc meet. We have a pta and have passed on info and have coffee mornings etc. But mum rarely leaves the house and dad ...well he's a man and their all women . And culturally he just dosn't like to 'mix' but he also dosn't like it when dads come into the setting . He thinks its 'wrong' for men to work in childcare.

I think what I am taking from this is discussion the ABA link , the consideration that a lot of this could affect the way they move around and where they live in the future . and info about mums net ...Hopefully if they do come on here MN Local might be really helpful. I think they need to be in a better position.

If they don't feel comfortable joining local groups then they don't, it isn't really within your control to influence how and when they take out their dd. is there any milage in pointing them on the direction of a local church or religious group? If there is a cultural difficulty in accessing what your group and the children's centre has to offer perhaps they might be more open to an approach of support from such a group which may have their own networks and family workers?

I, too, am baffled as to how you are so involved. I don't mean to be harsh, but it honestly sounds a bit strange, and that could be because you are trying to protect confidentiality.

The process for us was:

1. Preschool noted behaviours/features that didn't sit 'well' with them. Mentioned 'immature gait', to which I replied 'only started walking 6 months ago'. May have sounded slightly deluded - she was my first born, we'd been seen and discharged by physio, all profs told us there were no problems with DD1.

1. They approached me and said 'we've noticed DD1 seems slightly behind, and she's such a lovely girl, that we'd love to give her some extra attention, but we can't do that unless we have someone come and say she needs it. Could we ask to come and observe her so she can write a report asking for extra funding? I agreed.

1. Area Inco came to observe, then met with me after the session. She said that DD1 seemed 'slightly immature' and was organising 1:1 support. Asked me if I had any concerns. I listed my (quite extensive) concerns. She said that perhaps DD1 could be put on a Paediatrician's list for a 'once over'.

1. 1:1 implemented with agreement that preschool would fund initially, but County would authorise back-pay to cover once paperwork was through.

1. DD1 started falling over for no reason. GP visit -> hospital, met the paed who was going to have seen DD1 in the fulness of time anyway. Diagnosed with GDD, epilepsy, brain malformation over the next few months.

1. 1:1 continued. I applied for Statutory Assessment in September '08, Statement finalised January '09 naming Special School.

1. Now, nearly 7, still no diagnosis, still at Special School.

If you provide support in the setting, then you need to ensure that the message is sent out through the setting. If she isn't coping without additional support, then you need to raise that with County, or whoever it is who deals with inclusion. She should go onto either EYA or EYA+ and have it documented clearly. This is the best thing you can do for the child. Start the papertrail that will get her the support once the parents are onboard with recognising her needs.

I suspect you may need to stop giving the 1:1 support 'unofficially' if that is what you have been doing, so that you can document what happens when she doesn't have it.

I know that once she left preschool, I was given a folder which contained DD1's original observations by her keyworker prior to having 1:1 authorised. It was an activity diagram. I'm sure you're familiar with them. A drawing of the room, and lines with arrows showing DD1's flow throughout the room at any given time. It isn't an understatement to say that it looked like a firework display!!! She was bombing around so fast, that the arrows said '10.31, 10.31, 10.31, 10.31, 10.31, 10.32, 10.32, 10.32, 10.32, 10.32, 10.32......'

" Were free flow / free play so theres very little structure for her to deal with and lots of opportunity for self selected play"

This is the single, most unhelpful thing in your setting for this child.

A free flow setting is a nightmare for a child with SN. No structure = no clues for behaviour and expectation. If there's no structure, then the one to one amounts to glorified babysitting, punctuated by support at snack.

Imagine being blind and being put in a strange room. You would seek the walls to know you're boundaries. If she can do anything, she hasn't got anything to work with.

My DD went to a free-flow preschool and she would walk in completely dazzled by the stimulation of all the activities available -completely shut down, but appeared hyperactive. She us now doing so will in her (excellent) special school that MS is crossing her teacher's mind (fleetingly, she isn't at all ready, but is ahead of her peers). If she goes to drop odd her sister at her preschool setting, she reverts to that dazed child -completely overwhelmed with the variety and choice all available at the same time.

Do you use 'choosing boards' with her? Start with two items, one being her favourite, the other one something you know she doesn't much like.

Build some structure into the morning. Do you use music at all? DD's school have a good morning song, song at snack time, song for tidying up, song for lunch - it means that even if the detail is different, or the time is different, the song is the consistency the child needs.

"I very much promote the whole 'sometimes inclusion can be so inclusive it becomes exclusive' attitude so if I do one thing for her all the children have the same opportunity"

I admire this stance, but in this situation, I think it is working against you. It almost colludes with the parents notion that it's all just a little tricky, rather than there being a real issue. If all the children get the same treatment, it's very hard to say 'to cope in this setting, child in question needs x,y,z which is different from her peers'.

Also, the PECS - are you PECS trained? Is PECS being used at home?

My experience with DD1 was that we had people coming in and advising the staff. Then, the staff would either implement some bits but not others (because they thought the profs had misunderstood DD1's abilities through their own ignorance) or they would half implement strategies (because they hadn't fully understood the concepts, and the profs assumed a level of knowledge that wasn't there in the staff).

DD1 needed complete 1:1. She couldn't join in at circle times. They were inconsistent with the visual timetable (I used to ask for the cards, in the end, and put them up myself) inconsistent with signing, inconsistent with routine. They let DD1 dictate what she did and didn't do, because she kicked up a tantrum if they tried to make her do something she didn't want to.

She's now in Special School. She is in a class of 9/10 with 4 staff. She can independently take the register to the office and return to class. She is responsible and helpful (within her limitations). This is all because the structure of the school is such that she gets the right input for her needs, with the opportunity to practice self-help skills.

Do you do ABC charts (Antecedent, Behaviour, Consequence) to identify what she is finding difficult in the setting?