Sunday, 9 June 2013

Imagine......

 

 
WARNING LONG, WORDY POST- JUST LOOK AT NICE PHOTOS IF YOU'RE NOT UP TO IT, I DON'T MIND!
 
Imagine that the label on your t-shirt felt like a little razor cutting into your skin, and that the seams on your socks, felt like someone had placed small stones into your shoes.
Imagine that all the clothes worn by girls your own age, make you feel like you want to scream, they feel awkward on you body. Image hyperventilating in a changing room, because the dress you've just tried on feels so alien you begin to panic. GET IT OFF NOW! Your body shouts to you. No you'll stick to the tried and trusted leggings and top, at least one size too big! Worn to within an inch of their life.
Imagine the dread of needing a new pair of shoes, you knew your old ones, you knew how they felt. New shoes are different, you don't yet trust them. Imagine, this one 'small' event being a HUGE trauma!
 
Imagine having such an acute sense of hearing, that the sound of a clock almost makes you demented. Someone crumpling up a tissue enough to make you run from the room, hands over ears.....STOP THAT NOISE!
Imagine when you feel stress, which is often, that your hearing is even more acute!
Image how hard it must be to get through even one day, in a large school, almost 2000 other, rather loud teenagers, shouting, laughing, and dare I say it...swearing! Imagine the assault on your ears. The trauma. It's no wonder you:
a) burst into tears on returning home.
b) retreat into your room and emerge much later.
c) scream and shout, have a meltdown.
d) sometimes none of the above...just chat about your day. (Bliss, love those days!)
 
Imagine having such a brilliant sense of smell. That would be good, wouldn't it? You could have a great career in the perfume industry. But what if the smell of a soap offended you, certain food smells turned your stomach preventing you from trying anything new!
What if smells actually had the power to change your mood, Make you so cross? In an instant. You can dislike someone intensely, just because their mum washes their clothes in a different detergent to yours.
 
Imagine you hate to be touched, kisses are revolting. You want to scream if someone accidentally bumps into you (easily done when there are 2000 pupils!). You wish you had an invisible shield around yourself, so no one could touch you.
Imagine hating to have sun cream put on your skin, you hate the smell, the feel of it, the fact someone has to touch you in order for this to be done. It equates to someone smearing manure all over you. You wouldn't like that now, would you? (I only realised this after 9 years, boy did I feel bad!)
Imagine you loved GREAT BIG BEAR HUGS, but only at the right time, and because you aren't able to ask for them, you have to rely on those who love you being able to know when one is required.
 
Imagine human beings being sooooo hard to understand. You can't quite work them out. Sometimes, actually a lot, you get their body language wrong, you think they are cross when they're not. You take what the say literally, which is soooooo confusing, for them and you. Sometimes it's like you all talk different languages. (This isn't helped by the fact that your mothers 'relaxed' face can look a bit like a wet cod, and you often think you've upset her when you haven't! She's tried smiling all the time, but soon reverts back to wet cod mode as it hurts her cheeks!)
 
Imagine wanting friends but not really knowing the ingredients needed to nurture friendships. Imagine hating parties, but then crying so hard when you don't get invited to them. Why would you cry over something you don't like anyway? Imagine hating EVERY new experience that comes your way. Imagine not feeling comfortable talking on mobiles, to people you can't see. Another stumbling block, in a world of social media!
 
Imagine wanting to live in a world that you've created on Minecraft (computer game for those without children!) it's safe there, you know where each block has been placed. Just you, a few animals and a few zombies! (She doesn't mind the zombies, they are a doddle compared to humans!)
 
Sometime I think, I can't do this, be the parent I need to be. I feel too tired. Then I image, what it must be like. I just imagine. Image how it must be, if it wasn't imaginary. If it was real.
 
There's a lot I could write about Autistic Spectrum Disorders. I'm no expert. I'm learning all the time. But this isn't really the place. I have to respect my families feelings too. But if I can get those who've read this, (well done if you've got this far!) to understand just a little, that's good then, isn't it?
 
Ada Bea, mum who doesn't always get it right, but who tries her best :) xxx
 
 
 

63 comments:

  1. None of us ever get it right all the time but I can see that you try ever so hard. Best wishes to you. I think you have done a great job at describing what your young one goes through and it must be tough.

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  2. I was blessed or cursed with an overactive vivid imagination! I don't know even if my imagination could reach this far however its more than worthwhile to try purely to comprehend.
    Very interesting post Ada which made me think and quite a lot actually. It also made me humble so much so as to wonder...what do I have to put up with in my daily life compared to this???

    keep well

    Amanda :-)

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  3. Aah man I tell you when I read what it's like to live with a child who suffers like that my heart contracts. You are all brave and exceptional. Keep on. That's all you can do, isn't it, but know that there are lots of us out here rooting for you. All of you.

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  4. All we can do is try our best, no matter what we have to work with. X

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  5. Ada, can I give YOU a hug? I have no real idea of what you must try to negotiate each day, except when my daughter was very ill with anorexia. This gave me a glimpse into the world of distortions and raised and heightened emotions. I can empathize but cannot really " get it" needless to say i think you and other parents that deal with this every day are heroic. I know you would brush this off, but I KNOW and will say it again HEROIC. :-)

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  6. Beautiful words Ada Bea. Such honesty and you have opened my eyes. It sounds to me like you are doing an amazing job of being a Mother. x

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  7. Ada, brilliant post. Big hugs to you and silent empathy to your lovely girl. Our grandson's Asperger's is not such a burden - well, I say that, how do I know? But Dylan seems to have all these traits but to a lesser degree. He can cope with all these things a little more. In fact, you have brought some things to mind which I now understand much better.
    Our son Kit says that's just the hand life has dealt them, as bit different to the one they imagined but you get on with it! Their younger son has just been assessed as 'gifted' but without the Asperger's - he will be an entirely different kettle of fish! Deep joy! So my love and salutations to you and your family, you have a hard row to hoe in some respects but I am sure you have some great moments too. Lxxxxx

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  8. From what I have seen written here your best is worth everything to your little girl. I can't imagine at all how you or she copes with the challenges everyday must face. I think you are so brave writing this down. Sometimes it can help not just others but you as well.

    Don't be hard on yourself, it seems to me you are doing a brilliant job of being a mum.

    Take care.

    P x

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  9. oh, I hear you!!! loud and clear!! you always articulate so well what it means to be a parent of a child on the spectrum...I love you for it! similarly to your little person, we find school to be the most challenging place to overcome, still working on it. amazing teachers help, but its still a tough environment for anyone with sensory issues and social difficulties...thanks for the post x

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  10. One of the boys I teach has ASD and fits the above profile almost exactly. He can be challenging and, sometimes, difficult to understand, but he is also a wonderfully intelligent and 'direct' little chap. It sounds like you have a valuable understanding of your daughter and are doing a fantastic job with what can be an almost unfathomable condition. Gold star and a big hug Ada Bea x Jane

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  11. Ahh, Ada Bea, Being a parent to any child is soooo hard. I can't imagine what it must be like to have a child who finds life so extra hard. I am sure you are doing an excellent job providing the quiet safe retreat from the world that she needs. We all have our challenges and must rise up and meet them with all the strength that we have, and we must find that strength in the most unlikely places - in quiet creativity, in watching our gardens grow, in sharing small portions of the load with others. It might not be for you, but have you considered seeking out families with similar challenges to yours? It might be helpful to see how others manage, it might even be easier for your daughter to make friends with other youngsters who see the world literally. Just a thought.

    Keep on keeping on and you will be doing just fine.

    Eleanor xx

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  12. Just to let you know that I read your post and have no words of wisdom or understanding really, only my classroom experiences with my Autistic kids! I think they are ACE and you got this far sweet lady and you'll get to where you need to go too, one day at a time and some lovely fabric thrown in! xx

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  13. You can't always get it right, you're only human. But you're a lovely, kind, caring, devoted, eloquent, artistic, talented, open human and that really is as right as it ever needs to be.
    We don't all have your circumstances but we have those of our own. . .we've also screamed and cried and railed against the unfairness and battled the tiredness which is why we're all here to support you, because, in our own way we know.
    Take all help you can to get through the bad bits, enjoy the good bits and experience the rest.
    xx

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  14. Hi Ada Bea Thank you for sharing and helping others understand. I think you are very brave and you know what? We all make parenting mistakes but whatever decisions we make they are right at the time. Thank you, thinking of you and sending strength Kind regards Vicki

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  15. You have summed up ASD so beautifully. I work with autistic teenagers, and it is so difficult to get things right all the time, not matter how much we want to, how many courses we attend, how many books we read, how many "experts" we consult. But...you know what? All we can do is our very best, and want the very best for our kids, our students.

    And I'm absolutely sure that you are doing a truly great job.

    Helenxx

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  16. Thankyou for sharing this. Read every word. I have a much deeper understanding now so thankyou and well done to you for all youve done, learnt and for all learning and loving to come!

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  17. Ps I am referring to the end and not the beginning of your post.

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  18. My goodness Ada, I had no idea that sensory pathways were so heightened along the Autistic Spectrum. You sound like you are so tuned into her needs and know and understand her verbal and non-verbal language, that's all a child can ask for in a Mum, it's a constant learning curve for us and I know that you have to be extra sensory in your care of your eldest Bea. Sounds like you are doing a fantastic job and even though you might feel very drained and exhausted at times, you are doing your very best and you will be loved for all of it x God bless you all in this challenging journey x Big hugs, Penny xxx
    ps. I got your email and your winnings will be in the ost this week :o)

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  19. God Bless....i work with children on the Autistic Spectrum and knew where you were going after a few sentences.... stay strong . :)

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  20. Such a thought provoking post. I hope that many people will read this and understand how you and your daughter feel.
    Thank you for sharing. You are a wonderful Mum. Sending you both much love ❤

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  21. Ada, I read this word for word......I can't even imagine but I'm so proud of you for being the mom that does try everyday and you have taken the time to research ....a big hug to both of you!
    love Heidi

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  22. Keep being the mum you are. When I have had children with Autism in my care I have always felt so inadequate. Despite the challenges you continually face it seems as if you have the knack to reach your child and I am sure she appreciates your efforts even if she can't always express it to you. Take care xx

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  23. A beautiful insightful and thought-provoking post. Thanks for sharing a wee peek into a world that many will never even think about. How blessed she is to have you as her Mum. Hugs xx

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  24. oooo honey not only did i make it to the end but i'm in tears! i had NO IDEA!! and as you may have seen by now, you know that i get it...trying to deal with the unimaginable, the unbearable and the indescribable with a smile...it can kick you in the butt after a time. but you are so right...for them....so much harder! i think here is EXACTLY the right place to share this. love and hugs strong beautiful warrior mummy x

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  25. Oh Ada ... you write so eloquently about your little girl and with obvious love and understanding ... you are a wonderful mum and so long as you cherish her she will cope ... and so will you ... Bee xx

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  26. What a wonderful post. And it touched me because I, as many others must also do, find it very hard to understand autism as I've had very little contact with it, apart from a year working in a care home for young adults with learning difficulties. All I learnt then was when to spot the warning signs, the triggers which set off behaviours, but your writing made me understand it in a totally different way. Thank you.

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  27. Trying your best is the only thing any parent can do. It sounds like your a very understanding and intune Mum. (And you have that lovely typewriter !!) sarah

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  28. Oh I do understand, I really, really do, but more how your daughter feels than how hard it must be to parent her.

    I have been blessed because all four of my children are healthy, but for a lot of their growing up I have not been. This isn't something I much talk about but many years ago I was very, very ill with a viral illness that left me with symptoms that equate to those experienced post brain injury, in fact that's effectively what happened, the virus injured my brain. And one of the lasting effects has been a very much heightened sense of smell and taste and touch and a sensitivity to noise. And it's unpredictable, a whiff of the wrong thing and I can feel physically sick, too much of the wrong sound and I absolutely have to get away from it. Oh the times I had to stop my poor girls watching Friends because the the noise of studio laughter made my skin crawl. And another thing, among many but I don't mind this one, I can't bear to touch most tea towels, something about the feel of the fabric against my finger tips ... at least it gets me out of any drying up!

    And because I know what that's like for an adult to live with and can only suppose it's worse for a child, particularly one who also has other problems with understanding the world, I really can't imagine how difficult it must be to second guess what will or won't be a problem. So from someone who doesn't need to imagine ... very, very many hugs to you xxx

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    1. Oh Annie, hugs to you too! My Daughter-in-law says the heightened sensitivity is one of the most difficult aspects to deal with as you can't really control your child's environment all the time - and sometimes you are not even aware of the distress, as Dylan gets older and tries to 'manage' himself. Something to remember when I get irritated by small things!

      (I am typing very quietly for you.....)

      Thanks Ada for letting me hi-jack your comments to pop this one one! xxx

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  29. Reading this it makes you realise how much you take for granted. It must be very, very hard for your child, and for you too, but I know you must be an amazing Mum. Brings tears to my eyes.
    Thank you for sharing this Ada, and for helping us understand a tiny bit of what it must be like.
    Gill xx

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  30. Dear Ada Bea - you are simply the best.

    Kind thoughts and caring deeds coming your way and to you family.....always and all ways and all times
    Best wishes
    Jenny

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  31. Can anyone even try to understand who hasn't felt like that or is looking after someone who does.Is it trite to say how sad it must make you. I'm sure everyone who follows your blog must feel for you both.

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  32. Life can be such a challenge for all concerned. I have a friend whose daughter is on the spectrum, so have a little understanding of how difficult the simple things can be some days. I never view a child having a meltdown in a supermarket in the same way now.
    Have you read this blog - http://www.mysonsnotrainman.com/blog.html
    also gives a great insight to the life with a child with special needs. x

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  33. I cannot imagine how you feel my love, but I am thinking of you and your family
    Hoping you all enjoy and feel at peace this weekend
    Thea xx

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  34. Hello lovely Ada, what a heartfelt post. I am on the verge of tears! I know very little about Autistic Spectrum Disorder, and feel at a loss of words to offer support. In truth I can't imagine! What I do know though is that this post signifies just how wonderful a mother you are. You care, you try to understand, you try to get it right and that in itself speaks volumes about the person and mother you are!! As mothers we are always feeling like we are failing, but love and being with our children and giving them comfort in whatever way we can accounts for more than we realise. I am sending you a big hug and warm wishes for strength and confidence to get through the next chapter. xoxoxo

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  35. You're a brilliant Mum, Ada, and don't ever let anyone tell you differently !

    I have massive admiration for you, without wanting to be patronising in any way.

    Thinking of you and yours

    Love Claire xx

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  36. Beeing mum for a child with special needs can be a struggle for sure... I admire how you cope with all this:)
    Yes, I'm truly glad flowers have been created - being among them makes me feel happy:) Hope it works that way for you too.

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  37. Hi Ada...thats what gets me through too....just imagine the confusion and torment. the effort to get through just one day. I`ll never know what my guy truly experiences everyday, I can just do the very best I can to guide him through. so many days I get it wrong...oh so many...we are human but we are mums, no one loves them like we do! xx

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  38. Dear Ada, I so understand this, being close to children like your daughter. It is hard, both for you as a mother as for her. I don't want to scare you, but I've seen it gone wrong, in my private life, and in my work life. Hope your daughter will get the tools to handle it, to accept her life, feelings. Wish you all the luck, Gerda

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  39. You have touched my heart.

    Becky in TN

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  40. Oh Ada, a very heart felt post. Sending you love and hugs from my side of the world to yours. xo

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  41. Hi Ada, we hear you. It great to be able to find a way to creatively express what our struggles and challenges are. It helps I think. And in honoring that truth it helps to put us back in our power. And remember you are everything you need to be. Take care now, Heather x

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  42. oh Ada, this post is so touching, how I feel for you but then I think of your daughter (?) and realise how lucky she is to have you, you seem to have got into her mind and you realise all the problems, thoughts and fears she has to cope with, this must help her so much knowing her Mum is on the wave length to understand. You and your daughter are in my thoughts and prayers and will continue to be on my pr.
    Beautiful flowers too.

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  43. Your daughter is so lucky to have such a wonderful mum. I hope you, and she, are receiving the support you need. I think your post has made people think a little more about the difficulties faced by our children and the difficulties of parenting these children. We have found the right school can make a huge difference to the quality of life for all our family. Love, Mrs RV x

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  44. You have so much empathy for your daughter, and I think that's the most important thing of all. Your home is her haven.
    Wishing you and your family all the very best,
    Fiona

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  45. I've worked with children on the autistic spectrum, and its not easy. You can't just go home at the end of the day but because you know little b so well you can visualise how things will make her feel. I'm sure you are doing a wonderful job. It can't be easy being you, and it can't be easy being little b either x

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  46. Ada, I love the way you have described and painted this picture for me with your words. I have a close friend who has a boy in my daughter's class with Aspergers. It's a challenge, like you say, some days are good and some not so. They have some support - a Teacher's Aide who has been with him for the last 4 years of schooling as well as support from friends. You are a fabulous Mum and admire the fact you've done this Post which will no doubt help others. Mel x

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  47. I read this post yesterday but didn't want to comment at the start and be read by all that followed. You write beautifully about the challenges faced by our kids and us as their mums. I cannot write like this on my blog as if I started the floodgates would open and much of it would be too raw and too sad. After seven years of telling my boy how much I loved him and never hearing it in return, it finally occurred to me, that like everything else it would need to taught and then filed away in his catalogued brain. So, I said what I always said and then added that if he felt the same it would be nice for him to say it back. And he did, and how wonderful that was. Now if he learns it by heart, it might happen again. Small victories happen daily around here. Now don't even get me started on the sunscreen, facing that in our climate just about unravelled me! mel x

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  48. Sounds to me that you are a brilliant job being a great mother, taking the time to stop and think about how bad things must be for her. Making her home a colourful, bright and engaging haven to come home too, and being there for her. But sometimes we all need a wordy blogpost and a glass of vino just to take the edge off. x

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  49. You are an incredible person, to be so creative and loving and giving, and we are all lucky to be reading your heartfelt words, to gain a better understanding of others. Thank you, and I hope these dozens of supportive comments have boosted you up to continue your amazing job! Cx

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  50. Ah, lovely Ada, I wish I could say or do something to help. I suspect you ARE getting it right most of the time - your awareness and knowledge of living with autism is incredible. Most parents are muddling through all the time anyway, none of us are perfect, we're all just doing the best we can. xx

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  51. But at least you are learning and trying and doing your best and being the mum that she needs. Huge hugs to you hon. M x

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  52. Hello ada....I,m typing this on my kindle I hope to not make too many mistakes!!
    My bestest friends son is autistic, I have known him since he was born...I touch on how she feels, the emotions she goes through, .... I love him to bits ....and hear you, all you say, he wears ear defenders, and each little thing that he acomplishes is bigger and harder for him. I'm not sure what I want to say but I know that any mom can only do the best that they can do...I have messed up sometimes...they don,t come with an instruction Manuel..and all you can ever do is your best. Love ...that is what is important....xxx love Sophie xx

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  53. I have taught some autistic spectrum children at school,they have been a joy. You are a super Mummy, and your patience, love and devotion have made your daughter the uniquely special and wonderful young lady she is becoming.

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  54. What a fantastic family you are. You know, a couple of years ago I helped out at a summer school for a few weeks, and spent one-to-one care time with a pair of five year old autistic twin boys. I really struggled to understand how they viewed the world, and how to build a rapport with either of them, when neither would talk to or look at me. A couple of weeks in, I realised that one, Alex, responded to colour, so I started painting my nails a different bright colour each day - the delight when he came and held my hand so he could touch them! The other, Rowan, responded to music, so I brought in a CD of pop music, and seeing him smile as he played his favourite songs over and over was magical! Two very special children. Also I was only reminding my good friend last week - us both having had a go at one of those tests to see whether we appear anywhere on the autism spectrum - that the very elements of our personalities that pushed us further onto the spectrum were the things we like most about each other and make us special - mine was my love of making up stories about things in my everyday life. xxx

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  55. This must be the best description that I've ever read. Your daughter is so very brave to deal with this every day and so are you and your family. She is very lucky to have a mum like you Ada. You understand her so well.
    Rosie

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  56. Yes. I know exactly how she feels, you have almost described my own life. Clothes itch, people are confusing and unreadable and I am still scared of the telephone. I never knew why I was so different until I was grown-up with kids of my own and wondering why I still couldn't get on with anyone at play-group. With your love and understanding I am certain your amazing and unique little girl will grow up happy and successful.

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  57. hello there....yes you know i understand everything...and this post has brought familiar tears of empathy and heartfelt compassion for you and your family. We can only do our best and we try to live one day at a time......for all the hard times I wouldn't change our special little girl for the world and i know you feel the same. The huge response to your post is warming and comforting to know that there are kind people in the world who care and are willing to learn about this difficult condition. Thank you Ada and big hugs to YOU!x

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  58. Your words touched me so much, and put all of us in your daughters shoes for just a few moments. It must be so difficult and frustrating for her and your family at times.
    Sarah x

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  59. THANK YOU ALL SO MUCH, for spending the time to offer your support, thoughts and experiences. They are very, very much appreciated! :) xxx

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  60. Thank you so so much for sharing this with us. I am trying to imagine how difficult life must be for your daughter. I'm sure you are doing your best as a Mum to make her life easier. Must be so hard for all of you. Sending big hugs to all of you. Fiona x

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  61. I'm glad you wrote this post because I had no idea what it was like for someone like your daughter.
    She is very lucky to has such an understanding mum and I'm sure you do a great job of bringing her up. x

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