I've posted this in Helth/MH but B.Sweet said here might be better :)
"My DS was diagnosed just before Xmas, with an ASD (HFA, ADD & Sensory Issues). Before he started school, I knew something wasn't quite right but when I'd mention it to my DH he'd say he was fine. Compared to most children he is typical but certain things stood out, like the need to repeat a task a zillion times before he'd respond, or stopping along the way to complete the task, far too many times - being distracted almost instantly. He's ALWAYS been touchy, feely; hand all over you, trying to touch skin, jumping in our bed during the night and having his feet in your back. Although we tried potty training, it didn't stick and accidents were frequent - almost none stop, the need for carrying, getting tired quickly, etc. Obviously it became a little more prominent with additional problems.
When he started school, the teachers reported he had trouble putting on his coat, carry things and putting them on the peg; being very immature developmentally compared to the other children. I was even told to stop calling him his nickname as it was babyish and that maybe confused him. I felt guilty, did as they said, but at the same time I knew that it wasn't the reason and upset that I was changing how I treated him from that guilt!
When he moved up a year, his new teacher was very negative towards the children who were not perfectly behaved (many parents complaining about her attitude towards them), almost like there was no compassion for the youngsters, yet, on knowing her own personal/family details - I found it very weird of the negativity. I tell myself it was her way of trying to push things along for me/them, recognising the SN in them and being negative and forceful to us or any parent towards getting help. For us, highlighting the bad and using VERY negative terms such as immature, manipulative, lazy, stubborn and calculative . Whether right or wrong (and yes I did raise this with our Paed who in turn liaised with the school) I've resigned myself in believing the good in it rather than the bad.
Towards the start of that school year with the 'negative one' we spoke to our GP and asked to be refered to the Multi team, explaining our concerns and those of our school. The doctor was very helpful, being nice and telling me he thought our DS, from what he could see of him in the room, was okay but would refer us as asked.
Following the referal, we've been through approx 18 months of Paediatric reviews, referal to the ASD clinic, followed by team meetings/reviews, Psychological tests/reviews, school visits, home visits, etc. before being asked how we wanted to proceed. Did we want to wait another 6 months to see how our DS progressed or ???. I told the team, we would like to have a diagnosis based on what they had thought until then, so that we could start understaning him, getting more information and moving forward with therapy. They agreed and said he was High Functioning, with attention and sensory issues; we were refered for OT and SALT.
SALT was already pending review from the previous 8 months and following this last meeting; we are only JUST getting a review meeting (12 months on), and that was only through bombarding the team. For various reasons, we have two dips covering the usual SALT (who's on leave); they have no idea and aren't fussed about pushing ahead - yet this one individual manage to cope on her own before her leave!!!
OT was refered by us prior to the diagnosis and was initially 6 months wait; we have now been informed, we are likely to wait a further 6 months or more - and this is for the first, initial review.
I'm stressed and angry that everything has halted - our DS is 6yrs and with such a late diagnosis for his age, people are always banging on about getting early intervention, and yet, here we are just sitting and waiting.
I've read page after page on the internet, book after book on ASD, Sensory stuff, even watched clips on UTube! We can't go any further helping DS without these reviews - we need the reports on his issues. We know he has sensitivies to sound, we know he can't climatise his body temperature all the time, he's affected by heat, he doesn't notice the cold as much, he doesn't like the brightness of the sun in the summer, he loves ice cold drinks etc...
GGRRRRRRrrrrrr I feel like hitting my head against a brick wall, it feels like we've hit one, but I actually feel like hitting something hard just to make it real!
I have no friends, my family is two faced and can't be trusted, I have no one close by, I class work colleagues as such - they aren't friends! I don't get any ME time, I can't destress and off load.
My sons current teacher is brilliant - offered to be there if we need her, but I'm not sure what to do, what to say... She's his teacher, not my friend, and I don't want to rant at her, when her offer for help could mean something else, less taxing! "
I've taken a me day, but have managed to do nothing but surf forums when I could be out in the sun! My heads again...