Bobby's update/ advice

Lisabobby

13 December 2012 02:16

Bobby had a second appointment for his MRI after awaking from sedation, this time he had sedation through a drip which was a distressing time for him and us as the doctor and nurse did not even try to make sure he would not get to upset it was just hold his arm and put it in, bobby was screaming fighting them off and it took several attempts for it to stay in, maybe docs could have handled it better! He is nearly 4 and has asd and possible ADHD has been mentioned at last docs appointment, the MRI is to check why his head/brain has stopped growing resulting in a smaller then average head circumfrance microcephaly, anyway bobby did not sleep even with the drip he fought to stay awake so next stage is a general prob in jan now!

Different people have diff opinions on bobby as he can deceive people into thinking he understands more then he does so he has been denied any help at school with senco but the paed and child phy says he should have help, I sometimes feel that some professionals think I'm being over the top while others agree with me in his needs, he does talk a lot non stop but with a speech disorder and lots if jargon and Ecolalia learnt phrases but because he talks it seems he does not need extra help at school! He does struggle with certain aspects of school but also very advanced in other areas, he can read to a high level! But struggles to understand everything u say and what's going in around him, he had a melt down at the school concert totally freaked him out! As he did not expect to be leaving the class room to go to a hall where loafs is people would be watching, teachers tried to explain but he could not take in what they was saying! Anyway wondered if anyone else feels that they struggle to be believed sometimes and feel like some people think you are being an OTT mum,

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Mike Stuart 13 December 2012 17:32	Hi Lisa, Thanks for the update. Sorry to hear that Bobby had a distressing time at the MRI. I'm sure some of our members will be able to relate to what you're going through. How are you feeling at the moment? - Mike, Community Manager (mike@talkaboutautism.org.uk)
titch 13 December 2012 18:56	hi lisabobby - I too am so sorry to hear about the MRI. My son will co-operate with any procedure with the proviso "no hurt, no sore". If you haven't already I'd request a meeting with whoever's looking after him prior to his nxt appointment to explain + to see if something can be worked out to avoid unnecessary distress. When my son was little + dentists were still allowed to administer "gas", she wafted the mask near to his face + he quickly dropped off. I don't know what they do for his nxt procedure. I've had a general anaesthetic before. It was administered thru a venflon (the needle device that is put in your hand). Maybe some mild sedation 1st wd help him? I was also sorry to hear about school. Bobby clearly needs extra support there, as you know. It must be so difficult for all of you. Sorry if I've got this wrong, but I'm presuming he has a diagnosis but a failure to agree on a statement of educational needs. I'm also sorry if I've missed other posts you've done which wd have explained all that. If you haven't already looked there shd be info on statementing on this site + the nas site. I hope things ease off for you all soon. bw
Lisabobby 13 December 2012 21:30	Hi thanks for the commets, Bobby has been undergoing assessment for ASD on his last appointment we was told his unofficial DS is ASD aFTP looking into wether he has ADHD, he will have official ds in 6 months time, the area senco said to me in a meeting at his pre school that he is not bad enough to get any type of 1 to 1 to help they would not even put his case forward it was just a no won't even try to get it! He also goes 2 days to a pre school for children with ASD and I feel that he there the other parents wonder why he is there because he talks and there children are non verbal at the mo, but he has all the other problems there children do its just he takes and yes he is very clever but on the other end he struggles to express himself very routine based has sensory issues bad tantrums and has no imaginary play skills and if not directed to do something would just wonder aimlessly or be stimming shouting and running around in circles, at the mo I feel like he does not fit in at either school, he stands out is diff at his regular pre school but then does not quite fit in at the other one! We went to a friends daughter birthday the other day and bobby was obsessing with the tv as normal when another mum I did not know started saying to him ohh stop shouting and crying why don't you play with the other children! he was having a particularly bad tantrum as he likes to control the tv, she then went on to ask me if he suffers from anything?? I was so angry can't believe she had the front to say that to me, anyway I said he does not suffer from anything he has autisim,
Josie Barnshaw 13 December 2012 22:21	Hi Lisa Have you considered applying for statement? That might help to get some support in place for him. You can read about it here: http://www.ambitiousaboutautism.org.uk/page/about_autism/support/meeting_educational.cfm and if you need some help with the process you can contact IPSEA at http://www.ipsea.co.uk or your local Parent Partnership. It's best if you apply for a statement yourself as if they refuse it you have the right of appeal whereas if the school applies for it they do not have the right of appeal. Josie - Community Champion
Lisabobby 13 December 2012 22:26	Hi josien thanks for the info can I apply for a statement without an official diagnosis?
Josie Barnshaw 13 December 2012 23:06	Hi Yes, I believe you can. I have never had one for my son because I was fobbed off many years ago with "he doesnt need one", but I didnt know then what I know now and I would definitely suggest that you apply for one. There is a standard letter on this page: http://www.ambitiousaboutautism.org.uk/page/about_autism/support/meeting_educational/need_a_statement/asking_for_assessment.cfm asking your local LEA to carry out an assessment which is the first step towards statementing. There as some parents in here who have been through the process and I am sure they will be happy to keep you right with it. Josie - Community Champion
Snowdrop 13 December 2012 23:30	Hi Lisa I have two sons (7 & 3) who both have a diagnosis of ASD. We went to tribunal to secure our eldest son the Statement and specialist school we wanted for him, at the time his language was 2 years delayed and despite his significant difficulties we still had to fight to get him the help he needed. Our younger sons language isn't delayed in terms of the amount of words he can see which I too feel makes people overlook the other difficulties he has which I find very frustrating. I have to liase with a lot of the same professionals who I had to or still do liase with for my elder son which I don't feel is helping, an inclusion advisor who works for the LA met me for the 1st time the other day whilst I was with my younger son, after introducting myself she immediately starting talking about my elder son, saying what a bad experience he had had in mainstream school and how I mustn't let that experience feel negative about my younger son starting school. I wasn't best pleased after our discussion! Anyway, don't listen to all the LA staff when they say they won't even apply for a Statement or help, even though your son may not meet the LAs criteria to apply for a Statement, it doesn't mean you can't as a parent (as Josie said) if you do apply ensure you put as much info in your request as possible, you basically have to cover everything from birth, early years, social communication, health etc etc Good luck and do shout if you need any help. Tracy - Community Champion
Karen5kids 19 December 2012 11:41	Hi Lisa, Have you asked for speech and language to be involved with your lad? It sounds to me as though he would greatly benefit from a visual timetable at school. My daughter is highly verbal and it took 3 years of pushing to get her diagnosed, but now all the professionals agree that seeming very able and being very able are 2 different things. She had a basic visual timetable but she is now going to have a much more detailed one, and we are getting visuals for home too. We don't get statements in Scotland but I think you have enough information to push hard for one as he is not getting the support he clearly needs. Good luck!
Lisabobby 23 December 2012 01:13	Hi I just see this reply, he has a visual timetable at the autistic school he goes to 2wice a week and there have been discussions with the ed phy and the mainstream school to input the same for him but as far as I'm aware that has not been done yet! I'm having another meeting with senco etc at his school after the new year and I will be checking when it will be in place, as you are correct it will help him a great deal, he likes to know what is happening when and where etc I agree with u that seeming to cope and actually copeing are diff things, bobby is very able in lots of ways but struggles with the things that should be easy for him at his age docs said he is delayed by a year or more, but reads like a 8 yr old i love sitting down with him reading a book to me and actually reading words he does not know he has taught himself to read and naturally decodes new words