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Feel like giving up fighting

(7 Posts)
MrsStark1 Tue 23-Feb-16 14:25:14

Need some advice as rl help is non existent and I'm going in circles. Or even just someone anyone to talk to.

Background is my 6 year old dd has a dx of sensory processing disorder and we are currently undergoing assessment for asd. Her needs are moderate and in some parts more severe. I strongly believe she has asd.

My first issue is trying to get an asd assessment, dd was first seen in 2014 by paediatrician and he tried the ADOS test but due to dd's anxiety around strangers she would not comply so that was the end of that. He then referred us to Camh's where she was observed by a therapist who saw asd traits and we have a meeting with the Camh's learning disability team soon. Also we are waiting to see what's next. Is this normal procedure? Can anyone advise me on the process and what to expect next? I am looking into getting a private dx in the meantime for a definitive answer if it is just spd or asd as well, for piece of mind (so I don't feel like I'm the crazy one) and so I have some starting point to help evidence her needs (especially for school). I just feel like screaming at times and in the meantime we have had no help or support with anything and I'm finding it hard. Dd has been high maintenance since she was a baby and so far is battling to cope with everyday life. I have no clue what and if any help I can access or what More I can do to support her needs.

My second issue is school. She's recently moved school's as she was failing to learn and had many issues at previous school and they were awful in supporting her needs. She has had an IEP in place since reception and is now in year 2 for her leaning needs. In the new school she is beginning to make some progress and has pretty much most of the interventions available and is currently a year behind academically. My problem is at school she has learnt to 'hold it together' (wasn't always that way) so is happy and is ok at school and teacher cannot see her needs. Outside of school this is definitely not the case. She tends to be in overload or has meltdowns once she's home. Also the only reason she is making progress is because she is having more movement breaks to meet her sensory needs which allows her to focus. Previously it was all sitting and all day so she couldn't get the feedback she needed so therefore didn't focus or retain anything. In my opinion I think it's vital her sensory needs are met to enable her to learn but realistically am I asking to much? The health professionals had advised an Ed Pysch assessment but school said she doesn't need one. OT have said about having an EHC plan but school said def not. Again what if any support should I expect in place? I have no idea what to do to support her best. Ok she is making some progress but if properly supported she could make so much more.

I'm at the point where I just want to give up. I'm being passed from person to person with no help, one person says one thing while one says another and there's no end in sight. No one to talk it through with either sigh.

AttilaTheMeerkat Tue 23-Feb-16 15:37:10

"The health professionals had advised an Ed Pysch assessment but school said she doesn't need one. OT have said about having an EHC plan but school said def not".

You have big problems here with this school in that they do not want to support your DDs additional needs. Even if you had an EHCP in place, they may still not want to support her but continue to really still fail her. I think that ultimately you are going to have to look for yet another school, they are failing her now.

When their additional needs are not met many children learn to mask in school and then unleash all the frustrations of the school day at home.

I would consider applying for an EHCP; you need to consider longer term i.e junior and secondary school as well. You are her best - and only - advocate here. Be her advocate, do not give up!!.

IPSEA's website is good and has a mine of information on it, they also now offer a callback service:-

MrsStark1 Tue 23-Feb-16 16:05:01

Thanks Attila.

I know. The standard response is she is fine. I think it would be worthwhile for an ehc plan but I'm worried as school won't back it then it won't be considered.

I do worry what will happen once she moves up to bigger school and how she will cope.

Thank you I will try and hang in there, it's so hard fighting by myself with everything against me.

Will look into ipsea thank you smile

pandyandy2 Tue 23-Feb-16 20:19:15

I just want to send you a huge hug!!!

I suspect my DS has ASD but as he has delayed/disordered speech/language SLI even (who knows exactly it keeps changing!!!) this seems to be all of the current focus and even though I have told the paed, SALT, specialist language teacher and HV about all the different behaviours that make me suspect ASD as the bigger picture, at present these are either attributed to his language difficulties or part of a watch and wait approach.

Again huge hug because I get it hun xxxxx

MrsStark1 Thu 25-Feb-16 20:00:05

Thanks so much Pandy smile

An update as we had the camhs meeting today.
It was confirmed dd has social communication difficulties as well and camhs will be helping sort out school and that I should push for ed psych as well as an ehc plan as she should have one. Everything that was said was spot on and I finally have some hope. I don't know what this means for an actual diagnosis, if they will be assessing her again but I will still get a private assessment done I think.

pandyandy2 Thu 25-Feb-16 21:06:08

Orr, so pleased for you both!
That sounds great that they will help sort school issues!

KeepOnKeepingOn1 Fri 26-Feb-16 10:47:54

DS2 was referred to GOSH HFA clinic for second opinion (at parent request) as we 'had exhausted local expertise'. DS2 met the criteria for ADHD but the consultant thought ASD. He then had an ADOS to confirm but the consultant then said ADHD with social communication difficulties.

In terms of support received at school, his meant that he did not meet the criteria for referral to the autism outreach team as this required firm NHS diagnosis of ASD, despite the fact that he had clear social communication difficulties. Since the GOSH diagnosis of ASD he has been referred and is visited in school. He is the same child with the same needs but unable to access support for over a year in his new school. At his old school he was seen by autism outreach without clear diagnosis.

It is worth finding out what services your LA have - look at their local offer on their website and find out the referral criteria to specialist outreach services.

GOSH diagnosis is irrefutable. There are reams of questionnaires, including online that takes about 5 hours, for both parents and the school and there is a repeat of the ADOS plus the DISCO and WISC assessment. The team is multi-disciplinary and include SALT and OT. We had about 4 3 hour appointments in total, 2 of which DS2 had to attend. The whole process from referral to diagnosis took about 12 months.

otoh DS1 was diagnosed by SALT Margo Sharp using the DISCO and by Daphne Keen, consultant neurodevelopment paediatrician both of whom we saw privately.

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