lingle and the paed. episode 2. in which lingle shares lots of mumsnet wisdom with the paed.

[lingle]

Report on paed appointment for DS2 (3.8, receptive language delay +?).

Nursery originally asked me to refer DS2 at 3.0 in Sept 08 when he did not respond to his name and spoke echolalically. At Christmas (3.5) nursery teacher said responsive speech was greatly improved but she was very concerned that he would move away from activities when other children came along. I knew that since they implemented a visual timetable this issue had stopped and that they were much happier with him but even so I was surprised, when I picked up him this morning, that nursery teacher just said "I'm really happy with him".

DS2 has transformed again and again since Sept and is a lovely little man. The nursery teacher's remark left me feeling quite jolly and it was a nice environment at the hospital this time - toys instead of weighing scales.

Because I felt happy and proud of DS2 I was very unguarded and talked about two issues I'd not previously mentioned, which were his periodic "funny eyes" when running and also the fact that he dislikes wearing shorts, t-shirts and new shoes (forgot to mention haircuts).

Silly me, I was expecting paed and SALT to hear him talking and see him playing and say "wow, what a change since Christmas". Instead they looked at each other and said "hmm, yes, the traits are quite clear" and recommended we enter the diagnostic process. A little speech about "did I realise that DS2 is different?". DS2 was building and playing with a train track and the SALT kept altering the arrangement of the trains and making them go in different directions. He worked with her to build the track but politely removed the changes she had made. From this, she concluded that he is "operating to his own agenda" and "did not want her to join in". [hmmm] and [hmmm]. For me, no real "train boy" wants a random woman to keep interfering with the layout. I thought of Amber explaining that sometimes she is studying something in great detail and people come along and assume it is meaningless and she ought to be willing to change it as they wish......

Then there was a little spiel about how marvellous I am and that many families would be really struggling with a child with DS2's tendencies. All very nice to get compliments, especially with the effect DS2's homespun speech therapy needs are having on my career but Really? Is it that hard to turn on music for a fretful child, coax him into boxer shorts by explaining that the other pants are dirty, simplify your language, give him his preferred yellow plate, work on asking him not to screech his "no"s and spend lots of time playing Simon Says? I think not.

I asked what ratio of children entering the diagnostic process come out with an ASD diagnosis. Answer: 60%.
I asked what the benefits would be to us. I explained (and this is where I plagiarised you all shamelessly, so please feel free to ask for credits) that I was happy to treat him as if he has ASD and to accept help for his needs but that I do not see intervention and diagnostic as neutral events. I pointed out the inaccuracies in the Bradford Council support teacher's report and explained how I felt about these being on his record. I explained how other inaccuracies would probably make me feel defensive. I said that I saw our family unit happy and thriving, DS2 perhaps lucky in his lovely older brother and the compassionate mums of his peers who invite him round for tea, and a school he's already in where he has another year to go before starting the reception class.

To my pleasant surprise, they both took this extremely seriously and really thought about it. The paed said there are no interventions at home that would improve for having an ASD diagnosis. Her concern was that if school suddenly had a problem, they would not be able to receive the services of the Bradford LEA autism teaching team until he had a diagnosis. Also, there would not be funding for teachers to go on special courses for autistic children without a diagnosis.

However, the paed. went on to say that she agreed that the diagnostic process is disruptive to family life and stressful and that this needed to be weighed against the benefits of seeking diagnosis. I appreciated that she was realising I needed to feel in control and that ceding control by consenting to the diagnostic process might be counter-productive if it threw DH and me out of harmony and me through a crisis in my relationship with DS2. The speech therapist then did add that DS2's language is much much better than it was.

So we left it that I'll see paed. again in September and the speech therapist more regularly.

I mulled it over and decided to speak to the teachers at school: nursery, SENCO, reception and headmistress. But a friend who's a primary head said that I should remember that they have their own agenda too - anything that gives the school more resources is something that they'll want.

Time for that fish pie and a beer I think. Hope you're all having a good day.

Done for you both. Please let me know you got it.
HTH

received, thanks. will read with interest.

yes got it thanks

lingle, just because you have said you don't want a dx, doesn't mean you can't, in the future change your mind, we have pretty much refused the ados, atm... with a view to doing it in the future, in agreement with the paed, but not the clinical psychologist, ho hum.

I am happy that my ds is getting support atm, one to one, early years support teacher and salt is going to be arranging a course for us soon.

DS had extreme fear of dogs (isn't an sn thing though, I have seen my nieces go through it too) - slowly getting over it.... we spent hours in the company of two wonderful dogs which helped, only to have a horrible set back with neighbours dog, but we are working on it with ds.

Thanks Aefondkiss,

Nursery teacher said she is happy with my decision and that the headmistress agrees too.

I'm feeling fairly calm about it (for me!). The only thing that's bugging me is the way they tried to persuade me that most normal families would find life with DS2 really difficult. Who's the poster with one child with severe SN and one with mild ASD who says she can't really think of the mild ASD as a disability? Whoever it is, I was thinking of you.

Thanks Aefondkiss,

Nursery teacher said she is happy with my decision and that the headmistress agrees too.

I'm feeling fairly calm about it (for me!). The only thing that's bugging me is the way they tried to persuade me that most normal families would find life with DS2 really difficult. Who's the poster with one child with severe SN and one with mild ASD who says she can't really think of the mild ASD as a disability? Whoever it is, I was thinking of you.

Well I just posted on another thread how someone praised DS1's good manners in Sainsburys - Maybe professionals think we are all sad not to have children who can be arrogant and rude ?

I can't see what the problem is if you want to defer any decision about whether a dx might or might not be necessary. I don't think you are alone - others feel that HFA/Aspergers is a very difficult dx to make for a very young child and may not serve any purpose as long as the child is getting help. My brother did not have any dx but the school make allowances for his 'oddness' and he turned out fine.

Thanks Cyber,

It also lends such power to one's elbow to know that there is such variety from NHS Trust to NHS Trust.

I think Moondog also makes a good point about whether Bradford Council could really provide less support without a diagnosis and the legalities of this. Definitely something I might have to look up. I think I have a bit of a reputation at Bradford Council....

Moondog

I've read that paper of yours and also have read "Don't Shoot the Dog".

I had been wondering whether to explore ABA further but it is clear to me that social praise, maternal approval and fraternal acceptance are in fact DS2's chief reinforcers. Potty training brought this home to us vividly - I had thought I would have to "train" him step by step but it turned out what he wanted was to be told he was a "big boy" and to get a big clap. He sometimes asks for the toilet by turning to me and saying "mummy, big clap?" with a big inviting smile on his face. He reads my face as well as his brother does, and can describe sad/happy/cross/scared/silly/surprised and tired from drawings of faces so he is able to detect my pleasure/disapproval very easily. His less desirable behaviours are clearly attributable to anxieties (refusing to go into a public toilet) or immaturities (eg not wanting to share with another child).

Given this background, is ABA still a route you recommend I explore or is its unique advantage perhaps a bit less applicable to DS2?

By the way, loved what you said about the difficult balance and being open and honest. Trouble is, the more you feel "hunted" and "medicalised", the less open you are. I feel I've got all the difficulties off my conscience and into the paed's notes now so that's good.

Thank you so much again for your help.

Lingle,

I have used ABA very successfully with dd1 (on a break at the moment, due to lack of tutors - grrr)

Her biggest reinforcer is social praise, and we have found it works well.

imo, the principle still works - child does "work" for reward, whatever that reward may be.

ABA works well with social praise. It works with anything that is reinforcing. Although we no longer run an ABA program we're still very aware of reinforcement and - most of the reinforcement we use is social praise/feedback now.

Lingle, ABA is just the application of a set of scientific principles and can be used with anyone and anything (by people who know what they are doing obv.)

It enables people to learn faster and more effectively and to make fewer 'errors' on that path. Beyond scope of internet for me to outline how it could help a less needy child like yours. Fact that he is reinforced by social praise is fantastic. Makes it a million times easier.

I am also hugely interested in and influenced by Direct instruction. I use it a lot with my own child. There is more evidence for its use (partic. with kids who are 'failing') than there is for anything else, particulalry wishy washy Piagetian influence 'discovery learning' ( touchy feel stuff is great but does it help you to sit down, listen, learn and apply? Er.....no.)

Project Followthrough the biggest educational experiment of its time showed conclusively how effective DI is but results effectively buried by people (ie special education 'specialists') with too much to lose by acknowledging that what they offer is at best ineffective and at worst, damaging.

Be wary of everyone and everything that is on offer. Most peopel do not know what they are talking about in the field of SN. Unfortunate but true.

The site I havel inked you to with regard to Project Followthrough is a bit mad but what he says is true. Google Project Followthrough for more refs. from less wacky folk if interested in a more sober approach.

could I have your report too please MD, my e-mail is milkfloatquack at hotmail dot com

thanks for the e-mail.