I’m all new to this

This topic contains 1 reply, has 2 voices, and was last updated by  Anonymous 8 years, 3 months ago.

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  • #4114


    Hi,Forgive me if I'm running over questions that have been labored over hundreds of time.. there is so much information that I'm getting lost in the sea of it all.. (Also, I've just finished typing this and realised that I may have rambled for a while before even getting to my queries, my apologies for the length - maybe it's just been a mildly cathartic action typing this)I'll start by giving our brief story.Since my son (Connor) was born (6 weeks prematurely) he was never "normal" - we thought we were just lucky at first, when we got him home he would sleep through the night (good 12 hours... we often woke him up to feed him as we were worried he wouldn't put on enough weight, especially with him being so small and not growing quickly) and he rarely cried.. he'd happily sit there staring at nothing in particular for hours is left - but then at around 6 months old he just wasn't devloping the motor skills at the "normal" rate.. and a strange thing developed, he started lifting his head up then smashing his head/face off the hardwood floor, not crying or getting upset, but seeminly through fustration.. we were worrying we may have to put a helmet on him as we didn't want him to do any damage.. but we waited it out and eventually he stopped (can't remember exactly, but I think around 18 months old). This only came to memory due to discussions and reading up on autism that make some things from the past fall into place.He's three and a half years old now, he has a support worker in nursery who was initially brought in because he wasn't (still isn't) potty trained and because of his physical issues (Connor having to wear night-splints on his feet, special Pedro boots all day (His feet point up and out.. but they are straightening over time) and being under sized, he's coming up 4 years old in 5 months but is the size of an 18 month old toddler).. but this has developed into this girl trying to develop his social skills as he didn't seem to be coming along with a lot of issues - vocabulary mainly.. but this is where things started coming to light.He has a Care Co-ordination key worker (also our health visitor), who was basically brought in to liase between doctors, specialists and the schools to make sure things keep moving along well... we have a meeting wehre we try to get everyone together every 3 months and discuss the next stage.. so we have a lot of support from them and they are being great.. but sometimes getting straight answers is tough.Recently, a friend of ours who has an autistic and severely ADHD son mentioned that Connor was displaying some of the characteristics which her son did when he was of a similar age... which got me to researching autismNow, I found the CHAT test (And the M-CHAT) and went through the questions, and he ticks pretty much all of the boxes pointing very strongly towards ASD.. our attitude has been from the start is to accept that this is a very real possibility and to push to get him the help he needs as soon as possible as from the looks of it, the earlier he/we start getting help on coping with the condition, the likelyhood of him leading a more normal and independant life is greatly increased.. After investigating this ourselves then speaking to our health visitor, his teachers, connors doctor and also his speech therapist (some of whom then asked a list of questions akin to the CHAT tests and observed him in various situtions), it seems they have all been suspecting this for some time but didn't want to bring it up yet. We seem to be making some movement now towards getting him diagnosed (either way, ASD or not, we just want to know and learn how to help him) but the Doctors still seem to be reluctant to mention the word "Autism" while we are discussing his behaviours and they tend to skirt round the obvious and treat it like the elephant in the room. The voice coach waited until I was out of the room to ask my wife if I would be ok with everything if he did end up being autistic as if I was going to blame her or fly off the handle.. even though I was the first person to bring it up when speaking to her and made a point of explaining the research I have done and my reasons for wanting to push for a diagnosis... I expect some fathers react badly to this kind of suggestion and they have to be careful, but it can get frustrating when I have made my acceptance of the possibilities clear.Anyway, after our Care Co-ordination meeting today, the school head advised to get Connor "Statemented" (SEN) and the speech therapist is (who did the most of the ASD evidence gathering and has spent a lot of time with Connor) going to refer him to the Multi-Agency Committee who may also bring in the Child Psychology specialists too (Can't remember the abbreviation for the people she mentioned.. will post if I remember) - Edit: Remembered the name... CAMS - who we are advised that as one single person can't diagnose ASD, it needs to be this committee. All of this is getting arranged for us by our care key worker, who will liase with the speech therapist and also works along side the people who would determine if he would qualify to be "Statemented".. so things seem positive.OK, now onto my queries now you've had my rambling back-story (sorry 🙂 ) :Given the level of support we have, are we likely to have to wait a long time before he gets diagnosed (one way or another )?I've read that the authorities resist against a child getting "Statemented" - I'm hoping that the level of support we have built up may give us an advantage, but I have no idea.. can getting "Statemented" take a long time in a normal situation?Assuming he is autistic, what happens then? People talk about support if he gets diagnosed.. but I have no idea what to expect... I know the SEN funds the school to pay for additional support and/or equipment he may require (not sure if they provide anything else). Do we gain access to courses to teach us how to help our son develop? Does he get sent to additional specialists? We don't really need additional funds as I have a fairly comfortable wage to get by on but it's always handy to know what is out there.Basically, if he does get diagnosed as Autistic... what happens next? I really have no idea and can't seem to get any straight answers.Thanks for your patience, and I'm sorry again for rambling.. I'll list below some of his behavious just to give an idea of how he currently is on a day to day basis:-He HATES his routine to be broken.. normally he watches Night Garden at 11am, has his lunch, then goes to nursery, last week my wife went through hell with him in the 2 weeks holidays as he couldn't accept that after lunch he wasn't going to nursery.-He doesn't react to pain, he walked face first into a concrete bollard the other day, it knocked him flat on his back, he lay there and said in a fairly mono-tone voice "Oh no, not again" but didn't cry or even look bothered by the pain and schock of it-He would happily walk off with ANY adult he sees.. but other children are another matter (next example)-We took him to a soft-play area one morning recently, no other kids there and he was fine.. then a small girl turned up.. smaller than him with sun-blonde hair and looking like butter wouldn't melt... she smiled at him.. he ran from the play area screaming repeatedly "NO NO NO NO NO NO NO NO NO NO!!!!!!"-If he is watching a DVD (99% of the time it's Toy Story 1 or 2) and it ends, he would sit there staring at the DVD menu for hours if we left him to-He has a bunch of set phrases he says, he says them exactly the same every time.. sometimes they are used in context, sometimes not-If he gets taken out of his comfort zone, gets crowded, has something happen which he doesn't want to - he will just make a loud whineing noise, grit his teeth (his top-front teeth and now sloped back) and bite his arm-If he's eating (for example) bread, he will roll it up into a ball, sometimes eat it.. sometimes stick it on/in himself (ears, nose or eye usually)-Eating his own poop (and / or putting it up his nose, in his ears etc.) was a fun phase.. he still wants to do it but I think the shock of us hosing him down in the shower a couple of times have made him think twice.. he HATES the showerthe list goes on and on... as does this message.. so I'll stop here and just thank in advance for any help given.Thanks,bm 🙂

  • #5528


    helloyou can apply for a statement without a diagnosis and you can also do it online,you do not need the school to do ithttp://autismandaspergersinthefamily.freeforums.org/assessment-and-statements-of-special-educational-needs-t995.html

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