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As part of @apraxiakids #dayseven of their #apraxiaawarenessmonth calendar, I'd like to share something I have learned since T's diagnosis. There aren't always rules to neurological disorders. You can't always read a list of symptoms and tick all the boxes. You can't always follow a straight path to an end goal. Sometimes there's not even a reason you can see for it to have happened. We don't know why T has dyspraxia. He had some nerve damage to his mouth and arm at birth but there's no definite link. We don't know why he can say "Mama" and "Daddy" but not "Mummy" or "me." We don't know how his progress will go as time goes on, all we can do is take it a day at a time. But looking at the randomness makes his achievements so much more of a celebration. Every sound, every word, is a totally new ballgame for him, a new challenge to force those connections between his brain and his mouth. Our children are not defined by the random chance that is the body or brain they are given to navigate this life with. They are defined by the person within it, who can achieve such great things within a few short years of being here, sometimes even months or days. Every step is a celebration, and as their special people we are so lucky to see not their limitations, but how far they go despite those. "What lies behind us and what lies before us are tiny matters compared to what lies within us." 🌿 #norules #nolimits #slcntribe #apraxiaofspeech #apraxiaawarenessmonth #verbaldyspraxiaawareness #verbaldyspraxiaawarenessmay2021 #verbaldyspraxia #apraxiakids #senmum #senchild
|Finding myself again| Since Mila started full time at school and I’ve had some days in the week to myself, I’ve realised how much I lost myself this last year. It took just 1 year out of 27 to forget what ‘normal’ life is. To forget that I’m not just Mila’s Mummy and physio therapist, occupational therapist, speech and language therapist, nurse, teacher, whatever she needs me to be! I am also just me. This last year has been tough, like really bloody tough! As well as being at home with very little support for an entire year Mila has also got a lot bigger. I can’t do some of the things I used to be able to do with her anymore, everyday tasks are tiring me out and it’s heartbreaking knowing that isn’t going to get any better. But my point is, you need some time to yourself, some time to be you. Don’t feel guilty for it because this life is hard and if you don’t look after yourself it will only make it that little bit harder. Above all, I will ALWAYS be Mila’s Mummy. However, it has been nice to just be Kerry some days. #specialneedsmom#specialneedsparenting#senmum#findyourself#selfcare#lookafteryourself#backtowork #cerebralpalsylife#cerebralpalsy#cerebralpalsykid#cerebralpalsyawareness#cerebralpalsywarrior#hie#dystoniccerebralpalsy#spasticity#dystoniaawareness#sen#senmum#cp#eyegaze#tobiidynavox#speechandlanguagetherapy#communication#nonverbal#disabilityinclusion#inclusion#disabilityawareness#disabilityadvocate#proudmummy
P H O T O S H O O T S 🌻 I’ve never been one to want them, when Willow was born we never planned to get her wrapped up in a basket, and James and I certainly didn’t want to have our sleep deprived faces captured either, so it was never something we did. I don’t regret that either, my phone is full of 30,000 photos of Willow, the good, the bad and the very grumpy, and I like it that way, we have the candid shots; I like the candid shots. When Maisie got in touch with me asking if I wanted a family photoshoot, I’m not gonna lie, I winced a little. And then I went on her profile and saw the type of shoots she did, they are stunning! Go and look at them (@maisieedenphotography) and then come back here. ... Are you back? Hi, welcome back! Aren’t her photos incredible?! I realised as Willow’s getting older I don’t have any nice pictures of just me and Willow, so I said yes to a mummy & me photoshoot. As much as I love the desert/beach shoots, I knew Willow would be overwhelmed and it’d end up being a disaster, so we opted for a studio shoot. Willow was comfortable, which made me comfortable and we got shooting. And I am so pleased with the results. Don’t worry, I’ll be uploading more (most) of them soon! Thank you so much to Maisie for being so welcoming, kind, and a good chat too! It was so nice to meet you and I can’t wait to get back in the studio with you soon! 🌻🌻🌻 #photoshoot #mummyandme #dubaiphotoshoot #dubaiphotographer #newbornphotography #mydubai #lovindubai #sunflowers #globaldevelopmentaldelay #yellow #dubaimums #realmumsofdubai #imacitymama #britishmums #dubaimummyblogger #dubaimoms #momsindubai #mumsindubai #babymodel (⬅️lol) #britsindubai #uaemum #uaemom #dubaipregnancy #pregnantindubai (⬅️ I’m not pregnant) #senmum #senmummy #senparenting #sensoryprocessingdisorder #additionalneedsparenting #additionalneedskids
My ASD son started secondary school in September and by November they were doing exams .. an alien concept for my son. His teachers told him … revise your notes from class. Lewis came home and told me he had exams coming up that he needed to revise for and asked me “what does revise mean? How do you do it?” Even the term was alien to him! Naively, I said to him, “Just read over the notes you have as many times as you need to till you know the information without having to read it. You could also write it out and make revision notes to look over”. “Ok Mum”, he said “But what do I revise first?” So me being the supportive SEN Mum I am, made him out a revision timetable. Job done for me! Pat on the back Susie! You ace as a SEN Mum! Ahhhhhhh Nope! Off he went and he came back in about an hour in a complete meltdown!! When I eventually calmed him, he said “ I’ve only written x amount of pages so far and I don’t know any of it! I’ll never be able to write this amount of notes and learn it. Que another major meltdown. “Ok Lewis. Its ok, we’ll leave this for tonight and come back to it tomorrow evening” Stupid Momma! I’d forgotten about the damn timetable! “Nooooooooo says Lewis! “The timetable says I’m supposed to have learned this by tonight! I’m not even close!” The meltdown continues! Eventually I settle him in bed and think, ok so this is not going to work! What I came up with next, changed things up like you wouldn’t believe! Why not use the Voice Recorder in his phone?! No note taking, no reading … just recite the notes into the voice recorder, stick earphones in and listen over and over till its absorbed! He was able to listen in the car, listen in his room, listen anywhere and as many times as he needed to. Amazing! Dictating notes into a voice recorder or dictaphone is an ADHD/ASD-friendly alternative to the often frustrating process of taking notes. And because many SEN students have an easier time absorbing the spoken, rather than the written word, they can use a device like this to brainstorm their own ideas for a project or an essay. If you got value from this, please leave me some love❤️ and share this video 💋
💙 T's Verbal Dyspraxia journey 💙 I say journey as if its something he has finished, when actually it feels like it's a marathon that's so early on in the race that you can still see the starting line. It is easy to say in hindsight, but we always knew that there was something a bit different about T. When I look back through his baby videos there are only two of him making any noise at all. One is of him blowing a very long raspberry. And the other is of him loosely attempting to say the word digger. He was about 11 months old at the time, and he never said it again (nor made any other attempts to talk). That was in June 2019, and Summer 2020 I phoned his health visitor and requested for him to have his two year check done early. We were put in touch with a very kind community nursery nurse, who showed enough concern to send his details over to an NHS SALT. The SALT, although very well-meaning, couldn't seem to give us any more advice other than "turn off the TV, sit down with him and let him talk". And asked me to send her videos of him talking. Which as I'm sure will resound with many Apraxia parents as not being super helpful 🤣 He started preschool, and from every side, professional and family, we were told he's fine, he'll get there, he's still young, he's trying- the phrase I grew to absolutely hate because it didn't mean anything. In the end and in desperation I got in touch with his private therapist, who was able to give a name to his silence in his first session, and a diagnosis not long after. Since then we've started T's fundraiser, we have our sponsored walk in two weeks. We have managed to get him an NHS assessment booked in, and have an idea of when to start off his EHCP. But throughout everything we've done so far, we have had to seek it out, often push for it and nag and demand. We had to trust our gut, because everyone else thought we were wrong. We had to stay confident that we knew him best and that something wasn't right. We've got a long way to go but we've managed a lot in a year and I am proud of him and us as a family for pulling together and working our hardest to get what he (and we) needed.