peppa

Thanks Sally, I've been so overwhelmed with everything I've got going on at the mo, it's so lovely to have some concrete advice on where to go next! X

Still waiting for LEA to get back to me regarding a meeting! I've phoned quite a few times and just keep being told the lady will call me back. I'm getting quite concerned now that I'm being fobbed off so that i miss deadlines and can't do anything about it! I'm not really sure what to do next. My baby is due in just over 4 weeks so could really do without the stress right now. Think I could do with parent support from an experienced person in this area, not sure where best to get this? Parent partnership maybe?? Also a little confused if may have been some misunderstanding with school senco after our meeting, as he stated that he agreed with me regarding that the proposed statement was vague and that he intended clarifying things on the IEP. Then on the last day of term at home time I was asked to go in and have a look at some amendments he'd made on his copy of the statement that he was sending back to LEA to see if I agreed with them. I went and had a look and stated I agreed with the amendments he made, but now I'm concerned that I may have shot myself in the foot and that the LEA have the impression that I'm happy with the amendments that he made and I don't want to take it any further! Thing was senco wasn't available then to check if this was the case as he was out on a school trip! So I'm going to have to wait until return to school on Monday to check with him! Don't really know what to do next or where I stand legally now! Not getting support from my partner in this area he tends to leave it all up to me! I'm also concerned that if I go into labour, it's not going to get sorted, argh!! Don't know what to do next for the best outcome. So annoying that we have to fight for everything. DD is being particularly difficult recently to, I'm so worn out at a time when I need to be saving as much energy as possible for the impending labour!!!

Sent forms off requesting a meeting, so got call from Lea officer asking me to put in detail what my concerns were and send them to the chief officer, she also suggested I speak to school before a meeting is arranged as school may be able to clarify some areas better for me. I've had a meeting with the school Senco who also teaches Dd for part of her day. Fortunately he echoed my concerns regarding wording and content and has already been in touch with Lea to state he backs my concerns and would like to be part of a meeting to ensure the statement is amended accordingly. He's also preparing a revised draft IEP for dd to clarify exactly what support, will be used where, for me to okay before meeting. Expecting phone call from Lea sometime today or tomorrow with a date for meeting, so will give it till lunchtime tomorrow then if I havn't heard anything I've got the afternoon to phone myself! Hopefully this is positive, nice to have the support and backing from school, so I'm hoping to get the result I wanted. Thanks again everyone x

Dd does have sensory regulation/ modulation difficulties too, and at present is really all over the place in this area, we have such a lot happening at home at present, with a new baby on the way, house conversion and a family tragedy at the weekend, inevitably that has changed routines and dd hasn't coped well. I spoke to OT yesterday and she said the sensory system is usually the first to shut down when anxious. She has arranged for DD to start the Alert programme in a fortnights time and is currently already seeing her in school regarding her handwriting, and hand laxity. The statement at present just states in part 6, 'she will benefit from support, advice and input from an occupational therapist' so again this is non specific, I spoke to the OT regarding this, and she said that is common within statements but to request it be more specific, she assured me her intention is to give dd intensive support at present, and for as long as she needs it, so suppose that's good???

Thanks guys, I've arranged for a L.E.A liaison officer to contact me on Monday with a view to setting up a meeting, so I've got the weekend to go back through all the reports with a fine tooth comb and cross reference everything with what they are proposing and what dd actually needs, I'm ready to do battle I guess! Due baby number two in 7 weeks, so really eager to get statement sorted before baby arrives, whilst I have the opportunity to really focus on it! All advice is very much appreciated xx

Thanks Sally, that's great!!! I'll take a look at those websites x

Thanks Nicky, it's a little overwhelming in some ways! Just another little question, it states in the proposal, that dd should have access to : Strategies and resources specific to asd. Strategies to improve social and social communication skills. Strategies to develop concentration and attention. Strategies to help her manage her anxiety and frustration. A programme and support to improve her fine motor skills/handwriting. Whilst I agree with all of this, it seems a little to open to interpretation, as school could turn around and say well were already doing this. Am I being to fussy or am I justified in wanting it outlined in her statement exactly what strategies and programmes they plan on putting in place, when and by whom, or is that something that happens later? Just really eager to get it right for dd as she's floundering at present. Thanks again xx

Hi, thanks Nicky, I have reports from ed psych, OT, continence nurse, independant peadiatrician, literacy and numeracy assessments and asd teacher and senco and last years teacher and teaching assistant! They are all very detailed reports and give a really good accurate picture of dd and her needs. I was really pleased with the reports, so very very surprised that the proposed statement was so vague, I'll definatley do as you suggested though, thanks for the advice and info x

Hi, haven't posted in quite a long time, but felt everyone here were probably the best people to ask! I have just received the proposed statement for dd, I feel the provision they are suggesting seems quite adequate, but is however rather vague as to how that will be delivered,for example, it states that dd should have access to staff with an understanding of asd and access to advice from a specialist teacher. Reading that though to me could mean that they just give the school a phone number they can ring if and when there's a problem! Whereas I would like to think that it meant that the t.a. that would be employed to work with her 1:1 actually has knowledge and understanding of asd so this can be something available full time to dd. I don't really know what exactly I should be checking to include in the proposed statement, but have a feeling the proposal over all is a little vague. I have 8 days before it needs sending back, any advice on what I should do next is greatly appreciated!!!

Thanks everyone, that's really helpful x

Nicky thank you, that gives me a really good starting point, thanks. It's difficult to know what's going to be the most useful information. The school stated that they are already giving almost double the hours outlined for school action plus, and that she is needing more support, at the moment the class teaching assistant spends a lot of her time supporting dd, and they have a very close bond, as she has been with dd for two years now, however if she wasn't to be around when she moves into next year group I feel that could have a big impact on dd,s ability to cope. The school are very confident that dd can cope mainstream with just a little additional support, and have been very supportive of her thus far, but just feel statmenting will ensure she gets exactly the support she needs for the future. We have a meeting in roughly three weeks to discuss information gathered from myself and school, i'll definitely present things in date order though as you suggested to give a clear picture of how things have changed over the years. Thanks xx

Hi everyone, just looking for some advice if anyone can help? School have decided to begin applying for a statement for dd, they have asked me to gather information I think may be helpful, not really sure where to start? Thanks in advance

Thanks Kathryn, yes it was Creepy Crawlies i was referring to. Great for all ages as it is split into age sections and has outdoor climbing area, farm, go karts , sandpit etc.xx

Our local wacky warehouse runs a special needs night, 6pm till 8pm on a tuesday. There is no height or age restriction at present. Also there is a play centre in york, not sure if i can mention the name on here, but adults are usually allowed on the aparatus.

DD was initially prescribed movicol, we also tried mixing it in almost every food and drink possible and she still refused it even in very small doses. When i spoke to continence nurse and asked if there was an alternative, she prescribed sodium picosulphate, DD takes this no problem and actually likes the taste! May be worth asking if this may be suitable for you to try.

My niece is five and hearing impaired, she was diagnosed with ASD early this year, no connection was mentioned, but they were told its not uncommon. Sorry cant give more insight, hopefully someone can give more info.

My dd diagnosed HFA and niece ASD, also likely hood of my nana having AS.

Thanks i'll check that out. x

Hi everyone, A few days ago i recieved the report from our last visit with dd's pead, only to be suprised to find under the heading for diagnosis there is now a new condition been added, Reflex Anoxic Syndrome.(RAS) I''ve had a look around the internet and this seems most definatley what dd has. However was suprised that the diagnosis was given when we are still awaiting a sedated EEG, to rule other things out. The thing that concerned me the most regarding RAS, which was repeated on all the sites that i looked at, was that apparantly when someone is having a seizure, their body momentarily goes into cardiac arrest, and the brain and lungs can stop working! Also it mentions that sufferers can experience out of body experiences and near death experiences! Apparantly they can last anything from a few seconds (which is the usual with dd), up to a few hours (dd's first seizure lasted over three hours). I've rang and left a message for pead to contact me so i can talk through my concerns, but i prob won't hear back till after the weekend. Was wondering if anyone else was familiar with RAS and could shed some light for me, because must say its all a little bit worrying really. :unsure:

Thanks Karen, i wasn't aware and never thought about it from that perspective, i'm still learning how the system works really, it can be so confusing. Its hard knowing what to do for the best really. I just want to do all i can for dd. I think maybe if i can get the report that might help make things a little clearer. Its great to get advice from people in the know! thanks.

Arrghh!! DD is really beginning to struggle, we have started a home school diary to keep a closer eye on dds behaviours as she is really showing anxiety at school and at home in many ways. SENCO spoke at length again to ed psych and she stated that she didn't feel the Occupational/education support was the right person to assess dd at present, so her visit has been cancelled. Ed psych has asked school to observe dds behaviours socially and academically and get back in touch with results after the holidays, when she will review and decide what the next actions will be. I'm feeling rather annoyed about this as it is just more and more waiting with no guarantee that any action will even be taken at the end of this. We still haven't recieved the elusive report despite school pushing and myself. What do i do now, trust ed psychs judgement (although i have no faith in her whatsoever now) or do i start the statementing process myself?

DD started talking at 7 months and progressed very quickly to sentances. People would often comment on what a good talker she is, however she has difficulties with expressive language and abstract language which can cause her anxiety as people believe she is verbally ahead of her peers when this is not always the case. She was diagnosed HFA. She will often use words out of context or add random words into the middle of a sentance. Her current obsession is spelling out loud, she is fascinated with the letter sounds and will ask everyone she comes into contact how to spell everything within her sight. She makes up words to spell and will spell out road signs shop signs etc, as we are walking along. The sweetest moment was when she was 8 mnths old and after a feed i was winding her and she burped, she then loudly said "pardon", mum and i were in hysterics!

Oooh very interesting thread! Labour with dd was very quick just under 2 1/2 hours from show to holding in arms. Problem free labour, latched on easily, however suffered chronic reflux. Got tonsilitus at 10wks and had 2 lots of anti b's. 18mnth suffered unexplained fit, starved of oxygen, remained unconcious for over 3 hrs, hospitalised for 3 days. Concluded they were involuntary breath holding fits. It was from this age when our concerns slowly began to develop. DD now 4.8 years has suffered regular milder fits since, which are still under investigation. At not quite 3 despite having MMR, dd contracted measles and was very ill, dr said it was something like a 1 in 300,000 chance of her catching it! Looking back through family and my dads aunty was said to be mentally disabled, which now days would probably be diagnosed classic autism and the more i'm learning it seems most likely my nana (dads mum) has aspergers. My cousin from my dads side has a son with AS and multiple other disabilities. My neice is currently under assessment for suspected ASD. On dd's dads side, his nephew is suspected ADHD and AS. Genetics seems to play a big part within our family, but who knows.

Thanks karen xx

Meeting went well this morning, spoke with both SENCOS (divided between two teachers depending on year group), they are working together to get immediate help for dd. They contacted ed psych again to chase up report and were told she is 'chasing it up'! So we'll give it the week and see. They are also contacting all other proffs involved to set a review meeting of dd's current needs, and contacted a occupational/educational support officer, to come in and assess dd, set for three weeks time. We discussed all concerns, and the possibility of statementing which we all agreed will likely be needed to get the correct level of support for dd. Both SENCOS and dd's teacher have been very supportive and appear dedicated to helping move things forward, they are open to our suggestions and have already made changes within the classroom to help dd just from our chats in last couple of days. So at the moment i'm really pleased, and hopefully things can move forward.