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Post by blaze on Sept 7, 2015 18:04:41 GMT
My girls are starting reception on Wed
Adhd & spd, dyspraxia very strongly suspected for both & PDA for one. Second twin (pda) doesn't want to go & really badly struggled last term of nursery (the encouragement from nursery to prepare for school is experienced as pressure by her & neithercope with ppressure). Both also have huge overwhelming phobias, one of which is walking so will be breaking my back with two screaming kids just to get there..... (And that's after a morning of trying to persuade them to get dressed- nursery uniform was refused, and they are highly oppositional with each other so fight to the death over the same dress)
Summer has not been easy at all, they are restless and needing something else, and we can't go on as we are, bit I'm just not sure school will be the right thing.
The reception teacher seems great, especially with my list of demands!!! But its an outstanding school and has a toneof other awards & we are in a g gd area so lots of pressure to highly achieve/teach kids too much too soon (imo- I'd be opting for steiner or montasory if I had one kid so CD afford it) so I'm unsure if it will be right for us, and I worry about other parents judging my girls.....
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Post by blaze on Sept 11, 2015 12:14:30 GMT
Been really really tough
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Post by Deleted on Sept 11, 2015 15:33:38 GMT
Hugs if you can tolerate them. Calorie-free chocolate, crisps, wine and vodka shots are being virtually served to you via the internets, as a teeny consolation.xxxxx
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Post by contrarymary on Sept 11, 2015 22:13:07 GMT
really sorry to hear that blazewell done for getting to the weekend. do you have any sense as to whether it might get easier as they build familiarity with school, people, routines...?
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Post by Deleted on Sept 16, 2015 10:18:22 GMT
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Post by blaze on Sept 16, 2015 12:21:50 GMT
At mo its a huge mess.
Fb coping relatively well (thank god) first wk was bad but since she has settled. Some relucatance to get dressed but she likes looking pretty so agrees to dresses & hair in bunches (can't persuade her to do teeth in morning but she normally does at night or afternoon so CD be worse). She has had a couple of obsessive or confused melt downs but otherwise its going well for her now. However she is still is pull ups, is adamant she wwon't even try pottys or toilets and has pooing anxieties (withholding, constipation, then diahrea from movicol). School are fine re pullups (they had to be as iI said gp saysits disability related) and our reception is joined to the nursery so uses same ytoilets so has nappy change facilities.
Second born total disaster-wont wear uniform, masive meltdowns in morning, going and at start of school. They alwayssay she settles in 20 mins and takes opart relatively happily, she is happy at pick up but worse every morning. She only managed four mornings before she's became impossible to manage so is not going anymore for the moment. Not sure what's going to happen. I dont want sb panic to upset her sis, but iI don't want her not being there make her sis jealous & refuse to go. She is partially using toilets though.
It's so tough cause if Ijust had fb i wouldn't worry so much, if just sb I wouldn't have even tried to send her yet.
We have a peads appoint for starting ehc in aa couple of wks along with appointment with teacher on my own afterwards so will see then. What i wwantis the option of withdrawing sb and asking to defer her place til jJan & try again but teacher already mentioned legalities when I said what about trying her again in a few wks..... So unsure oof options....
Good thing is friends have been incredible!!! One friend whose boys go tosame school has been coming to get me once sshe's dropped hers off every morning and has offered to just pick up fb with her boys if we just send her. Friends have all been coping with me crying a lot!! There will be at least one day my friend can't do, but oh is checking with his work if he can do a couple of later mornings (he commutes quite far so this is a big ask....)
It's all so tough, twins are so so difficult never mind all their added problems...... And all this has made me decide Imust learn to drive (only no aautomatic teachers free at mo......)
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Post by blaze on Sept 16, 2015 12:29:05 GMT
I find it a little strange that it's now considered part of asd. It just sounds like yet another developmental disorder to me. My sb has huge asd style melt downs (head first on the floor screaming- her sis didn't violent ones but less so now) but asd isn't something they fit criteria for in other ways (other than maybe sensory issues/obsessions)but sb hhas extreem fear of any change, even a normal change in the day like waking up or getting dressed can be overwhelming for her. And she especially reacts so badly to any form of pressure (her sis is unuasaly stuborn and can react badly to pressure but it doesn't appear to be a fearful reaction where as sb is sheer panic) SB is v affectionate, great eye contact, v empathetic ( hyper sensitive to emotional atmosphere) so doesn't fit with ASD at all.
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Post by Deleted on Sept 16, 2015 12:48:52 GMT
I'm a member of a couple of PDA Facebook sites.
I believe that I have a mild case of it.
It does seem to fit into the ASD camp but in the same sort of way that ADHD would.
I think the social aspects and meltdowns are common with 'standard' autism so was co-opted into that sphere.
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Post by blaze on Sept 16, 2015 12:53:56 GMT
I think I likely have a mild cases also, and spd (both more so as a child) but again I don't fit with ASD at all. Most dds cross over with each other at some point, doesn't mean they are all on autistic spectrum- I think there maybe alot of unrecognised cases by thinking this way.
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Post by Deleted on Sept 16, 2015 14:26:34 GMT
I don't feel that I have anything constructive to add blaze, but just want to say that I feel so much for your situation, and I'm wishing the very best for you and your little ones. I'm glad you have friends there to support you. We send our kids to school so early, in the UK. Your idea of keeping sb at home until January sounds so sensible, I wish they could work with you on that.
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Post by Deleted on Sept 16, 2015 14:29:50 GMT
What's wrong with undiagnosed mild cases?
When I say mild I mean show symptoms that are distinctly noticeable, not just a hint now and again but also not very debilitating.
I'm not a believer in any of the DDs fitting neatly into a box - more of a here's a map of DDs...throw a cow pat at it.
I'm not contemplating chasing a diagnosis for PDA.
As for it fitting as an ASD - I think ADHD does so merits it under the same criteria. To me PDA shows aspects of both ADHD and Aspergers - sometimes such things can get subdivided up by medics and cherished as their specialty, a good example being the current turf war between ADHD and ASD.
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Post by blaze on Sept 16, 2015 15:14:21 GMT
I don't think my daughter is a mild case at all, our gp agreed on my opinion of her having my Adhd & SPD &pda - and we all know how hard it is to get GPS to take these things seriously. However if she (or other children) just had pda symptoms I suspect many would never consider pda, more so because being classed as part of asd most would write this off for a child who is affectionate, empathetic, sociable, popular, etc. Considered as a DD in its own right would mean more cases are recognised rather than put down to bad behavior or bad parenting.
However, this is a thread about how upsetting it is dealing with this while starting school. It's for support not debate, so if you want to discuss it please start your own thread. I really need a safe space to discuss how tough this is so I don't want to see it go off topic.
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Post by Deleted on Sept 16, 2015 19:23:41 GMT
Your GP sounds fab, blaze. Just a thought: might your GP maybe send a supporting letter if you want to pull sb out of school til January. Sometimes when teachers or other professionals talk about "legalities", the underlying issue is their own fear of the potential consequences of being seen to have made a "bad" decision. I just wonder if they might feel more secure if a GP gave support to the idea? How old is sb anyway, is she more than 5 years + 1 school term yet? Just a random thought but wanted to let you know that I am thinking of you. xx
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Post by clubby on Sept 16, 2015 21:22:05 GMT
I have great sympathy blaze. I looked up PDA and my mother, whom I care for, fits the profile perfectly. She needs a very small and organised world shielding her from anxiety, and within that world she likes to have complete control to crazy make. I think the biggest challenge is to get the society around you to understand the difficulties and help you rather than make things worse. I think taking sb out of school to find her own comfort level is essential. She will catch up as she gains confidence.
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Post by blaze on Sept 17, 2015 12:17:26 GMT
Thank you all
I think the r teacher will be fine about whatever I do re keeping sb at hm, I guess it's more the issues re places (as in if she's not there another kid CD use that place, it is a v sought after school).
Gp wd def support anything I asked, but that wd mean getting an appointment, which means asking friends to watch sb (she goes head down top volume screaming in waiting room otherwise- had wonderful experience where lovely member of the public came and offered support/glass of water/to entertain other kid last time but that's another story) and right now I am already relying on friends hugely.
Today has been somewhat successful. I had to do drop off on my own today (friend whose helping with that works this one day-in cab which will be useful if I ever have to argue with school- and drops her boys early at breakfast club & oh cdnt go in late today) so had to bribe sb with magazine even to leave house, put her in carrier & magazine + toys+ disaprooving newsagent looks later we got to school & sb didn't freak when we went in, just was v clear she wasn't staying, but no panicking & we got to chat to her old nursery teacher on way in. We retreated to bed as shed been up with school nightmares all night, snuggled guinea pig etc. Her sis had great day, but two pooy nappy changes with upset. Thurs we *usually* go to a toddler sensory class in the afternoon, and am trying to continue this as their best friend now attends this class, so we went to coffee shop to meet them for lunch first, but fb poo anxiety meant we are hm, her sis stayed with our friends (because she obviously wasn't going to give me a choice and I wd have looked like one of those ridiculous mums trying to persuade a non budging kid!) Owe my friends so much!! But slightly worried as she initially freaked out at the number of babies in coffee shop and I got a vile look when I explained to a mum of run away toddler that she's phobic of babies taking her toys (she thinks they will eat them- she has a point) and the toddler sense class was a disaster for her over summer as it was all the classes in one so far too busy so she hadn't been in a while so am unsure if she will cope or if I've left a friend with caos on her hands ......
On a slightly side note, I'm terrible at relying on friends, bar my best friend who has just moved away to uni, and my other friends here are all fairly new friends- we moved when the girls turn two and four of us kind of fell into place at toddler group- we are all v v close, v well suited, close knit group & I feel v v comfortable that they don't judge the girls or me & my girls clearly adore their kids and vice versa, but it does feel so huge to rely on new-ish friends this much when there's no real way I can ever repay any of this. I very much love them, but its another thing to feel guilty about!!
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Post by Deleted on Sept 17, 2015 12:57:53 GMT
It sounds like they are happy to help. Remember, not to underestimate all the other ways you contribute to the relationship, they likely wouldn't be so giving if they didn't feel that they were receiving something of value. They clearly like you.
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Post by annie on Sept 18, 2015 9:04:54 GMT
Hi blaze You've certainly got your hands full. Settling one child into Reception is hard, but 2 is more than double!! Glad to hear you've got a Paed. appointment which is presumably to begin the process of assessment for ? both your girls, as well as consideration of an EHCP (Education Health Care Plan) Don't want to add to your burden, but I think, now that your girls are at school, it's time to consider where "special education needs" fits in with the possible support they need. You may have already heard about IPSEA (national voluntary org to help parents of children with SEN) - www.ipsea.org.uk - they are a huge source of information/support when it comes to navigating your way round the complex system of SEN. Apart from all the information on their website they also have a tel. help line where you can book for them to call you at a time convenient for you. Good luck
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Post by blaze on Sept 29, 2015 16:07:47 GMT
Thanks, but we're not at that stage yet. Peads appointment for ehc plan is happening & we will go from there. I also don't have them both in school, only one will go. Have meetings about that & other issues coming up too.
It's stupidly hard going at mo. Can't remember when it ever wasn't
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ladybug
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Post by ladybug on Oct 8, 2015 9:31:53 GMT
Just wanted to send some hugs. Being a parent to small children is incredibly gnarly at the best of times. These summer holidays just about killed me!
I think even for kids without and neurological/learning disabilities - starting school is tough. My middle daughter (just starting yr 1) really struggled all last year and still is, she gets tired and overwhelmed very easily. They are so very young to be coping with full time education so I hope that you get support and understanding from the school and those around you.
x
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Post by aetheling on Oct 9, 2015 10:18:46 GMT
Blaze you do an amazing job managing all that! They sound like a brilliant group of friends, they probably see what you go through and are pretty glad it's a lot more straightforward for them so want to help their friend, it's probably not as much of a big deal to them as it is to you because you're so grateful and it means so much for you ^_^ Xx
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