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peainapod

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About peainapod

  • Rank
    Norfolk Broads
  • Birthday 01/27/1987

Profile Information

  • Gender
    Female
  • Location
    Swansea, Wales
  1. peainapod

    Buggy

    Sorry about the weird smiley ! It was meant to be b )
  2. peainapod

    Buggy

    Hi, I'm hoping you can help me ... Today I went to a physio review with my almost 3 year old autistic daughter (who also has severe learning disabilities). She badly needs a new buggy because she's getting too big and heavy for the kind of buggies you can buy in mothercare etc. She tends to play with the wheels which scares me and she uses her feet as breaks and the rain cover wont cover her anymore. I read on an autism forum that buggy's are available on the NHS and you get one by going through your physiotherapist. Lucky we had an appointment today ! I asked the physiotherapist who didn't seem very impressed that I was asking for this. I explained to her that A) because of her severe learning disabilities she walked at the level of a 1 year old so would use the buggy for quite some time, I need the buggy, I have an older child too and no car so going out shopping to get groceries, doctors appointments or anything that requires me to go out is impossible without a buggy, C) Safety, my 3 year old is slowly turning into a little Hulk ! Her strength is shocking considering she's only almost 3 and the older she gets the stronger she gets and the easier it'll be for her to get away from me and this scares me as she would happily run into the road. The physiotherapist first told me that the company no longer gives out buggies (this wasn't true because unknown to her I'd researched it online the night before) so I pushed her what was I expected to do ? She then went to check with her colleague and came back and said she would measure my daughter and apply but that the company can say there's not enough need. I found this ridiculous and to be honest insulting, as if I'd be asking if there wasn't enough need ! I need this buggy so much, I will be housebound if I don't have a buggy and now that she's getting older we need one that is more suitable for her needs than your average stroller. If they come back and tell me no should I take things further ? Would they be wrong to refuse me a buggy ? I know she's not physically disabled and that her 'need' for a buggy is different compared to the 'need' of a physically disabled child but the need is there none the less. I'd be grateful for any advice or if you know of anyone who could advise me that would be great. Sorry if this is in the wrong place !
  3. peainapod

    Newbie

    Yeah I came on here a while ago but I think it took a while to process my registration, it wouldn't let me post anything for a while. Thanks for the link, I think this will be a great place for me
  4. peainapod

    Newbie

    Hi Lynden, thanks for your reply ! It's really great speaking to people in the same boat, or yourself who seems to be in the exact same boat ! Its great to hear that your son and his sister still get along great and that she still helps him, I was worried that this relationship my girls seem to have would fade or that she would get fed up because her sister is slower than her but this gives me hope ! Thanks
  5. peainapod

    Newbie

    Hi Bee, thanks so much for your reply, it feels great to know that I'm not alone, and I'm really glad I've found somewhere to come and share what's going on and have advice. I would give anything to zap myself forward 6 or 7 years to see how things are ! I know this will be a long process, its just killing me all the waiting. That's great about your son, I love hearing about children that don't let their disability get in their way, its an inspiration. My little girl doesn't talk at all, she can't even get one word out yet, and I'm no doctor but for some reason I can't imagine her talking. Does that sound strange ? I hope I'm proved wrong ! It also kills me that she doesn't show love towards me (don't mean to sound selfish), I would just love for her to cuddle me or reach for me or kiss me (this has never happened). One thing I'm happy about from all this is her relationship with her sister. Her sister is 3 years old and she loves her, well they are both obsessed with each other to be honest but nobody brings her out of her shell more than her sister. The doc told me that its likely she'll be fine with her sister or a small group of close people, so I'm glad she's got that with my other daughter A. She always seems very much in her own world, or lights are on but nobody's home but when she plays with A, just for that 5 mins or so it seems like she's actually there and interacting. Maybe A will be the key to her progressing, and I'm very lucky that A is very loving towards her sister. Can't wait for this report to come mind, I just need to know where I stand and what to do next to help her. Nothing happens fast enough for me lol Thanks again for taking time to reply, it means a lot
  6. peainapod

    Newbie

    Hi guys, I've come here after being told this place is great. My daughter (17 months old) had an assessment 3 weeks ago because she wasn't reaching her milestones like she should have, and we were told that she has severe learning disabilities (maybe one day she might progress to moderate learning disability) and very strong indicators of autism (has never shown affection, never puts her hands up to be picked up, won't look at people in the eye, and loves being repetitive and getting fixated). We were told that she'll be in nappies a long time and won't walk or talk for a long time. Have to say I was completely shocked and devastated The worst I was expecting was (the health visitor told me) that she would get certain toys that would encourage her to catch up ! We're now waiting for her report to arrive in the post (I was told by doc 10 days but surprise surprise its taken more than 3 weeks !) so we have have a more detailed explanation because as you can imagine (as hard as I tried) I couldn't seem to take everything in at the assessment and it was all a bit of an information overload. She's been referred for blood tests (I'm assuming to check for any underlying conditions or other conditions ? I've been told its not uncommon for children with certain disabilities to have other problems too ?), she's also been referred for 2 tests on her genes, one was called the fragile x syndrome test and I can't for the life of me remember the name of the other one ! She's been referred to speech and language therapy too and also to a special needs playgroup (well we're on the waiting list ! Will probably start here in about 4 months). If anyone has been through something similar with their child and could let me know what to expect in the next year or so, I mean I know to expect a whirlwind of tests, assessments and appointments, but any more detail of what happens in these appointments or what the outcome could be it would be great. I know every case is different because of how broad the spectrum is but any info will be helpful. My brain is practically fried from reading and reading and reading about learning disabilities and autism I thought it would be nice to speak to someone who has or is actually going through it too. Thanks for reading guys
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