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Having a down day

4 replies

kyz1981 · 31/01/2013 15:47

Having a really down day today and feeling very anxious. Ds pead is observing him in nursery this afternoon and its been said several times that parents should not be there- I understand that but then I get drips of information from nursery staff about what was said etc etc and I end up getting really worked up and stressed. This is also the final bit before we get our diagnosis - suspected ASD.

Nursery seem to gloat and gloss over some of his issues by explaining it away as oh he is very tired that's why he has been screaming for the last 3 hrs, and oh his communication is really improving when its just copied speech or new lines from Peppa pig, they seem to be under the stupid impression that Ds having a hard time or not coping is a reflection of the skills of the staff so need to excuse it- by stating he is tired, not well, did not like messy play rather than actually he finds life bloody difficult and not knowing whats going to happen when or different staff being around not following the same procedures send him in to a frenzy.

I am just worried I guess that we are not going to get a DX and that its all in my head or my parenting and that I have exaggerated some of his issues, which was not helped by a new HV calling as she has seen DS file and coming out with stupid comments like I am sure normal parenting interventions would help.. He is only young you have a lot of time.. and I am starting to get really angry with people thinking they have all the answers, or that somehow I am not parenting my son the right way, or feeling they know DS without even meeting him, or at the moment nursery staff getting very excited about working with DS because they find ASD interesting and want to get in to that area of work.. I just want to shout at everyone that if they want to help they can bloody implement half the things the OT and salt suggested rather than talking to me about DS and his behaviour/Quirks.

I just hate the way I feel I am treated now because I am a mere parent who obviously knows nothing and never had a career or life before DC. I was in a respected career before DS and had close working relationships with many of the proffessionals who now have the power and my opinion was respected, listened to and acted upon. I now feel like everything I say has to be proved or disproved and nothing I say has much merit.

Just feeling a tad Fed up and pissed off with the whole process and peoples need to try have all the answers all the time.

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PolterGoose · 31/01/2013 16:03

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kyz1981 · 31/01/2013 17:20

Thanks - Its just so draining - this whole long process, we were supposed to get DX on Jan the 2nd but SALT was ill and could not see us before the meeting so when we asked we were told it would not be in the next CDC meeting - 9 months time but before that when SALT had seen him and done a report and Pead, OT had been to see him in nursery.

SALT have seen him but she is so overworked and been on holiday for weeks that she can barely fit us in let alone write a report, and OT and now Pead have seen him in nursery, so I don't have a clue TBH.

I am on Earlybird at the moment and I just feel that I am having all of this ASD information everywhere with everyone really hard to deal with and finding myself loosing patience with everyone who has an ill informed, glorified or just denial view of ASD- and actually wish they could come and see some of the grim realities of living with DS meltdowns and sensory issues and less of the oh he likes to line thing up and did you know he is very good at puzzles.

I am also terrified as I am seeing some Issues in my older DD that are setting alarm bells off- she functions so so much better than my DS but there do seem to be issues and I am shitting myself that I will need to start this process again at some point in the future if it gets worse or as she grows up- highlighted by going on the early bird course.

I just want someone who is involved with DS to say something nice and typical about him that's not laced with ASD traits or problems or how they have solved them- just feel I have no escape from everyone's views- But yes I am looking forward to the smugness especially with portage but mainly the useless HV I seem to encounter along the way.

Just want it over with now

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PolterGoose · 31/01/2013 17:47

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Message withdrawn at poster's request.

kyz1981 · 31/01/2013 18:45

Yes thankfully - I am the only one on early bird without a dx so not sure if it is pre- or post here.

Thanks- for replying - I tie myself up in knots when I don't know what is being said or done when I am not around, its just so nice to have a place where people "get it".

Tomorrow is a new day.

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