Has anyone else read 'A real Boy' by C & N Stevens ? Set off some sad and happy memories of my child .

[magso]

I have just finished reading this. It is quite a gripping book about a son with profound autism. There are so many things I recognise although my learning disabled son is more midwayon the spectrum, so we have grown though many of the difficulties! I sang transition songs to my son, and ds went through a long drop and smash phase and had an even longer fascination for thresfolds! It is a lovely book.
However I now feel even more distressed that it took so long to get an autism Dx and appropriate schooling for ds. I feel desperately guilty that I did not find the money to do this much younger. I can see that many of the other profs involved ( SALT, OT, TA- working 1:1 with ds is very difficult)strongly suspected but were not allowed to say to me. I have suspected autism since ds was under 3, but ds difficult early start confused the picture ( he is adopted, was premature and suffered early neglect). I have requested autism assesment many times - the paed wanted to wait and see, but did refer to CAMHS to be turned down initially (Ds has multiple DDs.) When the psych confirmed autism the paed said we had done remarkably well (my mother used to work in a school for children with severe disabilities including autism and an overseas medical friend gave me a copy of a therapy manual - so we have kept busy!!)I just feel so guilty and angry. I also feel devastasted that we had no support for so long!!
Ds is now doing well. His language and behaviour has really improved in the last year since getting weekly SALT and attending a special MLD/ASD school. I wonder where he would have been if he could have accessed this school at 3! Sorry to add a rant!!

I wonder sometimes too as I remember considering ABA when ds1 was 2- but having been told that he definitely wasn't autistic and that any problems he had were mild it seemed like complete overkill to put in place a 20 grand a year therapy. So we didn't. Having seen how much learning to imitate aged 7 did for ds1 I also wonder what would have happened had he learned to imitate aged 2. If he could have, maybe he couldn't.

I liked the book too- he's very like ds1- I reviewed it here

Actually there;s something wrong in that review- I have since found out that receptive language is still limited mainly to nouns!

Thanks for replying JJ, interesting review. I thought of you and DS1 as I read the book. I guess we never know what might have been! I too was supprized and a little envious at the fathers rhino hide! I wish I could cope as well and not be mortified to the point of tears when things happen (like smashing milk bottles - thank heavens they changed to plastic ones that bounce within days of ds discovering that one!). Oh Ive read quite a bit of the book- not in bed but sat on the hall floor whilst ds was in the bath (miniscule bathroom -Ds has been extra clean this week!!) I am hoping Dh will read it too as he struggles with the dx! Ds still cannot let a door close between us in the house and struggles to not come with me to the loo ( actually he camps outside the door!)Ds s understanding and use of verbs is not as established as nowns. He has quite a good vocabularly now!
Ds although not profoundly autistic, is a little like David in some ways ( although he doesn't sing in tune sad to say!!). More when he was younger- he has changed a lot in the last year. Ds certainly thinks differently and has a memory like an elephant for important (to him) detail. Some extraordinary talents seem to have faded as other more conventional things have developed. Oddly when he was at the limited speech/ nown only stage he could play (phonetic) eyespy. Now he is learning letters he cannot the confusion and thought processes seem to have stopped his automatic replies. Odd that.
I put a program in place to develop attachments and communication when ds arrived. As it happens this also builds interactions. I thought I was doing awful job since progress was slow - but one day he said Mummy! (although useful words like 'milk' and 'out' obviously came sooner) and now he is trully affectionate (a real bear hugger). But if I had known he had autism my 'reading up' would have been different and well who knows!! The progress he has made in one year is delightful but there have been many what if moments too!

I found it very interesting and moving. I did not see any similarities to DS1 though ( He is very gentle in the way he handles objects/animals so no smashing here) so it proves what we say all the time - that professionals need to stop looking for stereotypes and cliches. ASD children are all different. We did push to get an 'early' diagnosis - 3 1/2 but looking back I'm not sure what more we could have done to help him develop. We tried PECs ( in a half hearted way) at 2 1/2 but had zero success but that was probably because it was not a serious attempt.

I found the fathers explanations of his sons point of view very moving. I think too they were finding their own way - as do we all! Ds is a sensation/ stimulus seeker/needer but he has slowly learnt to notice the affects on others. He is gentle by intent and has learnt in part from my tears (smash things mummy sad/cross). Its just takes longer for ds to learn associations! The ed psych said he had relative strengths in associative learning -phew we are lucky or he would still be playing bowls down the stairs! Actually he can be very kind. He would give his favorite conker to a crying child because conkers make him happy! He is just learning that conkers dont cheer up everyone!!