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.