Part 2! To be honest I love a drama! I don't actually think it would matter what it was about, any things better than crappy nation street right? It's like watching a really fast paced (dream) movie of my life. I say dream because let's face it if you've been in the system with a child with autism you'll take the SALT, and the Paediatrician input scenes as something you saw whilst having one of those moments in make believe land, dreaming up rare scenarios of how to get your child diagnosed quicker! (It's not like that at all) I mean, going from diagnosis to homeschooling within three days is just utterly unrealistic; I'm not slating the programme, awareness is awareness after all! But the portrayal that all families can get a visit into a SEN school at the click of a finger, or a referral from an out of county paediatrician to a leading SALT is just utter make believe! Unless of course they are paying for all of this privately. (Which there has been no mention of!) It's like fitting a whole five years into 6 episodes, which I imagine is pretty hard. And I guess as its a drama some things are going to a bit unrealistic. Even so, still, I love a good drama. It highlights the ups and downs a family can have, it highlights some symptoms of autism, even though it doesn't explain any of these symptoms in the plot, they are still there. Laid bare for all to see. The way his dad succumbs to his meltdown and gives him back his music, rubs his back and tells him it's ok even though he's just trashed the living room. This is what happens in our families, we look like soft touches, they look like spirit children with all the control. It's not that! These children need safety, they need their world to fit together nice and neatly, they like what they like. So he has no interest in books, or reading or puzzles? So what? He is a genius with music! Let him be. If that's his safe space, his calming source, who are we to take that away? If you can find a balance in life then good, great go for it, but if you can't for now? The safe space is fine, you'll work it out. So will they I'm sure. (Prob on episode 6) Just for the record, parents of autistic children don't allow them to wander around aimlessly on their own. Our children live in their own little world, and they find it hard to put theirselves in the shoes of others, so it's hard for them think about the consequences of his actions, why it might be wrong and how others are feeling as a result of their actions. They don't think, they do. I can't tell you how many times I've had near on heart failure when lolly goes wandering, I've even found her walking off out of a park with another family and their baby oblivious of what might happen! We need an extra pair of everything with autistic children. I still like it............ Do you? Love J X
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The A word! loved it! There's been so many negative posts that I've seen! But everyone needs to remember that this is one journey, there are millions more and not one is going to completely reflect that journey!
When it first started I was a little disappointed because they refused to see the difficulties as it wasn't like that for me, then I slapped myself and remembered that there are people out there that present like this and it isn't portraying "my" journey! It's theirs and we should respect that! So he can talk, does that mean he doesn't have communication difficulties? No! So he has straight hair, does that mean he doesn't have sensory difficulties? No! When you have met a child with autism you have met 1 child with autism! They are all different. Just like us people without autism are all different. Ok some people with autism share the same difficulties. Some. Not all! And those difficulties can vary in strength and affect people differently. The birthday parties!!! Now this one struck a cord with me! I mean it practically bright a tear to my eye, lolly has been invited to three birthday parties in four years of school! Has only been invited to one child's house to play! Yep that's it! Shocking isn't it! But this REAL! This is our real life. This is her life. And do you know what? She isn't even aware of it! Bless her little gorgeous heart! We love her and we will be her family and be her friends! Because she means the world to us! Some posts are criticising the programme for the speedy diagnosis they had. Well let's face it, if it was real time, we would have barely touched the surface, come on people they are fitting a 6 year journey into a series! It has to be shortened! I think the only mistake they made was that it wasn't clear the parents already had him in the "system" as such and it was confusing how they reacted when communication difficulties were mentioned, and they had already seen a doctor of sorts. But that's it! Everything else was real! For me! Especially brought it home when he slapped his dad after he made him okay footie, like you do! I have lost count of how many times Kenny has been on the receiving end of one of lollys back handers! He's learnt now though! Do not get on her level and look in her eyes! She will NOT tolerate it!!! I can't wait for the next one! See you all next week! 💗 Most people are completely devastated when their children are diagnosed, or in disbelief, they go through the motions of why her/him, why us. Why can't my child be normal, but I had fought since she was one for a diagnosis of autism. I had already come to terms with it. Already prepared myself for the future, i understood that I was never going to get those "firsts" that other families have, well not at the right time anyhow. I'd grieved for her "normalness" way before she was diagnosed so when she was, I cried with relief not loss, finally these "professionals" could see what I saw!
You see it's so much harder to "see" autism in girls, Mainly because they are social, but let me tell you it's all a mask, she copies and mimicks and creates a model for herself from others to get by socially and in turn that masks her symptoms of autism. Let's face it, who here hears the word autism and automatically thinks of the child that hums in the corner under a chair whilst banging their head, or thinks of the genius child who can name every dinosaur possible, or divide 862/364 within three seconds? That's why it's more difficult for girls to obtain a diagnosis, they get left under the radar. The statistics of males diagnosed with autism are 1:4 and for females it's 1:19 so that's significantly lower. In fact research suggests that the ratio could be equal if there were more research and training on girls and autism. Still now Polly hasn't quite grasped the correct social behaviours that should be used. One minute she could playing really nicely and the next bang, she's snatched a toy and ran away, or she's bitten someone on the arm, or she's bashed them over the head with it. Naughty? Bad behaviour? Or something different? For those people who have open minds, they will see that she was playing nicely for a while, she was coping. Masking her symptoms and interacting nicely, it all becomes to much for her, she is exhausted of "pretending" to be someone she isn't and so she lashes out. I'm not in any way excusing this behaviour. It's wrong and she's taught that it's wrong, but for Her consequences do not mean anything.She isn't in our world she has her own world, she doesn't have anything of importance to take away to teach her a lesson. And in any case if we did do this, her behaviour the next day in the same situation would be the same. Because it's not punishment she needs, it's not rewards for good behaviour (although they do help sometimes) It's understanding and prevention that's the key. And she's teaching me this .... She has always been a live wire, never stops, is a whizz around the house and would rather play with my belongings than toys, she is very far behind her years and this has only become more apparent since her little sister "moo ma" has gotten older and started playing, she's teaching polly It's great! Imagine a 3 1/2 year old as a teacher for a 6.5 year old. Mentally they are the same age. She has communication difficulties relating to her autism, and this also affects the way she plays, she can't communicate with her peers effectively and so everyone gets frustrated, she doesn't understand games, and her Imagination relating to playing games is very limited. However she does use her imagination but in a completely different way, she "pretends" to be a teacher (this is her fave) or which ever other professional comes into her life. She watches them intently, their mannerisms, what they say, how they speak and what they do. And she memorises this and then acts it out all day every day! And children don't want to be bossed about by the "new" teacher or doctor they want to run around playing chase, IT, or football. She can do this but not well, for instance if she was playing chase she would become too rough and end up pushing another child over, the same with IT. She's very heavy handed and likes the feedback the pushing sensation gives her. So we need to teach her that she can get that feedback from another source but not to do it on other people. It's really hard trying to help her understand these things because of her communication and understanding difficulties. She really struggles. I'm hoping as she gets older that her friends can understand her the way we do and she can get on ok in school And grow up with some real good friends. That's my one wish for My little polly pocket 💗💗 It's hard when you know there is something different about your child, yet others are unwilling to see it, ignorant in believing or just completely in denial. I wasn't any one of those people. I saw, I believed, I was willing.
That's the thing when disabilities are invisible, or not physical people assume, judge, disbelieve. Polly pocket is my gorgeous 6 1/2 year old daughter who struggles on a day to day basis. She was diagnosed with reflux, sensory processing disorder, autism, dairy intolerance, sleep apnoea, hyper mobility and flat feet, ADHD, and anxiety "problems". She is my princess, my star and every day presents us with challenges but every day we battle on and achieve things that we never thought we would. Like yesterday I managed to brush her hair completely without counting to 20 by screaming at the top of my voice at 7 in the morning. This seems minor, brushing your child's hair you say? Easy?? Here take the brush! Every day we battle these minor things that to Polly pocket, on a scale of 1 - 10 10 being the hardest is a 10! She feels every single little thing, a slight brush in her arm can cause her actual pain. You know that child who doesn't want to hold hands crossing the road, flinging themselves on the floor and screaming "you're hurting me" yep, that's us! and there's me, not knowing anything about SPD, shouting her to get up, when actually it felt like I was ripping her hand off. So from that moment on she held my hand, in more ways than one because this journey is only just beginning for us and the only person who can guide me along, see me through. Give me those all important answers to those silly silly questions, is her. My little dolly. She's holding my hand for the rest of my life and she's teaching me her world. And by letting her do that I can somehow try and bring her into mine, ours, to feel safe here, not get lost, overcome her fears, and most importantly to feel like she belongs. And belong she does!!!! 💗 J X There's something I want to say...... To you, the reader, parents, teachers, friends, acquaintances, anyone who wants to listen. At the beginning of my journey, I cared so much about others and what they thought. I spent so much time explaining, debating and trying to create an understanding of my children, our family and the way we worked! It consumed me, I cared what you thought! I cared what you said. And I cared how you felt. I spent lots of time in the school playground chasing my children around, sitting them somewhere quiet and away from your probing eye so I could calm them down to avoid the inevitable. I tried picking them up early, I tried a few minutes late. In fact I tried almost everything. Nothing was good enough. It always ended the same way! Things got bad! There was no help coming, no one understood. Or no one was willing to understand. No one cared! I cared! A lot! I cared for my children, I cared that they didn't have real "friends" I cared that no one spoke to us, or helped us. I cared that even after struggling so visibly the people who you put your trust in and have high expectations of clearly didn't give a shit! I remember one day.. It was before one of my first big meetings at school.. On a support group someone told me to not enter that meeting as a parent, a mummy, a friend. "You go in that room and be an advocate for your daughter, you are her lawyer, her voice and she needs to be heard" so that's what I did. And to my surprise I done it well! So from that moment on I didn't care anymore, about you pointing that finger, letting me struggle, talking in hushed tones behind my back, ignoring our quite clear troubles. I didn't care that you didn't care. I wasn't fighting for you to understand anymore. It didn't matter. You'd made your mind up. But let me tell you something now....... Regardless of your opinion, your outlook, your complete lack of understanding. There are more of ME out here, you haven't met the last. And us parents who fight so brutally for the welfare of our children, to protect our future. NOT CARING is not going to look good on you! When we reach that edge of not caring a fire is ignited and when those flames start watch out cause there's no smoke without a fire!!! |