Friday, 2 September 2016

An apology to those disturbed by my autistic kids in public

apology letter from mum of autistic child

This post is written is response to an article by Tess Stimson on Femail "After a woman was vilified for telling a disabled girl to be quiet, one FEMAIL writer told off a noisy disabled boy - and wasn't ashamed of her actions."  The writer responds in the comments.



Dear Tess Stimson, and the people on the plane and in the restaurant,

I understand you had a recent bad experience when you were out because you were disturbed by a child making a lot of noise.  You may have been having a difficult time and eventually snapped at the child.  It emerged that the child was disabled and what ensued was a classic onslaught of verbal abuse from a mother defending her child. It's not uncommon. 

As you mention in your article on Femail, a lady on a plane was photographed when she told off a disabled child kicking her seat.  The angered parent then sent a photo of the lady on social media which went viral.

Well, I'm going to do something very unpopular with many people who have disabled kids.  I'm going to apologise, I'm going to say 'I'm sorry.'

I have been on both sides of this.  I've been the singleton making her way on a long haul flight to see friends in the USA, and had the kid that kicks my seat.  I've even asked to be moved or upgraded because of it.

And I've been one half of a couple who get to a restaurant and look around for 'that' family.  You know, the one I'd like to not sit near and asked to be seated far away from them. 

Well, now I am 'that' family. I look into the same restaurant and ask to be seated away from all the other diners, and preferably in a corner to prevent accidental escape from the kids.  A booth there is even better as it helps us contain our kids, noise and movement.  No one can tell by simply looking at us that two of our three kids are classified as disabled.  And inevitably as restaurants can get busy, someone may end up sitting near us.  And they may have an experience just like yours. And I'd like to say to them and to you in advance, 'I'm sorry.'

I'm not sorry that my kids are playing on a loud iPad. But I am sorry that it may be loud and distracting for you.  My kids need this do deal with their sensory overload and anxiety.  We are working on helping them reduce it's volume, tolerate wearing headphones and listen to us when we ask them to turn it down.

I'm not sorry that my son has ADHD and can't stop moving. But I am sorry that his moving and jumping about in his seat has caused your seat to be bumped or you've had to hear another piece of cutlery drop to the floor...because it's been knocked off the table.. again. You may even have asked our son to stop playing his cutlery like the child in your article, but due to his lack of focus he would have forgotten what you had said after possibly just seconds later. Of course the snappy encounter could have caused him to become very upset - he knows he's moving and he is already trying hard to stop.  Tapping and playing with the cutlery helps him stay calm. We are trying to help him use other ways of staying calm and helping all our kids learn to sit still.  But it means them being focussed enough to hear our communication and use other ways to stay calm.  Sometimes it means they need to take medication, and it sometimes just doesn't work.

I'm not sorry that my son is now speaking, but I am sorry that because it's loud it may disturb conversations. Our eldest son literally cannot tell that he is speaking at a volume that is totally inappropriate for the setting.  But we are working on it. Slowly he is able to hear us when we speak to him and he is able to focus for longer and longer meaning he's able to have a lower volume for a longer time. But it still means he's loud a lot of the time.  Our other son is non verbal like 25% of autistic people, but he makes a lot of loud squeals and shouts. Again we are going to therapies and work with him every single day to help him communicate appropriately.

I'm not sorry my son has had to get out of his seat and jump around.  But I am sorry it has disturbed you or bumped you.  Our younger son has finally managed to self regulate his sensory system by getting up and jumping when he needs to.  This stabilizes him and means he doesn't go into a meltdown. We encourage him to balance his system before we arrive by spinning him around and jumping at home before we leave.  Sometimes it's not enough.

When I ask my kids to say sorry when they do something naughty, I say they have to mean it.  This means if they could do it again, they would try not to be naughty - they would like the result to be different. And that's absolutely right.  I'm working really hard with my kids to change the outcome of these encounters at restaurants, in planes and everywhere else we go. I'm not interested in changing my kids but supporting them so they can function in society.  This means if they are ever going to eat at a restaurant or do anything else we need to practice. 

I'm pleased for you and your daughter who has managed to learn to discretely inject insulin whilst at a restaurant in a method not to cause any offence.  I would not be offended at all if I saw this by the way, although it might take some explaining to my boys if they saw, which of course I'd be delighted to educate them about. But my boys will not learn everything about being discrete and exactly how to behave in a restaurant quickly. It will take many impressions and many practices. It's not as if we can even practice at home as they have difficulty with generalising - doing the same things in different places can be confusing.  So we plug away slowly, picking days that seem to be the best, places that seem least full and least likely to cause an overload in the kids.  And one day they'll may be able to go to a restaurant and enjoy it - just like you wish you'd been able to that day. 

So all I can say is 'I'm sorry,' just now. And let you know that in that same restaurant or on that flight, I'm already feeling the stress of my kids actions before anyone else. I'm aware they are loud, I'm aware they are jumping about and I'm aware they seem to be ignoring my instructions. I'm tittering on the edge myself and whereas the sympathetic look or a quiet word from another person will only spur me to help the kids more, a 'snap' at my kids from another patron like yourself, may cause me to snap back. I definitely do not condone what was said to you during your experience but I can understand where it comes from. And after we've exchanged snappy remarks, it's just become a disappointing lunch for everyone and my kids haven't had the best opportunity to learn because everything's become more stressful.

One third of people with autism are asked to leave a public place because their behaviour is misunderstood.  I'm trying really hard to help my kids function in society but it'll be an easier journey for everyone if society works a little on it too. As you say in your article, all kids are kids and shouldn't be treated like adults. But this doesn't necessarily mean telling them off, it means teaching them and that's not the same thing.   Just like you say, they are adults in training, but training my kids takes many hours, many repetitions. And I'm honoured to train them and hope that it means they won't be in the third of autistic people asked to leave somewhere, or worse, in the half that don't go out at all because they fear they will be unaccepted and asked to leave.

So perhaps if I say, 'I'm sorry' and mean it, in advance and tell you how I'm trying to teach them, trying to make things better for them and you, then it might make you feel a bit better, make me feel better, make us both feel a bit less tense, a bit less snappy and we might manage to train ourselves how to get through lunch together or a flight together without it becoming another disappointment for any us.

From another hopeful mum of disabled kids

Tess Stimson has since replied to my letter in the comments below. Have a look, what do you think? The Daily Mail are currently considering an article where Tess Stimson spends time with a family who has children with autism. Email them if you think it's a good idea here

People can make places inaccessible too. Linked to #accessiblestories linky

60 comments:

  1. So hopefully she sees this & many others pay attention too.

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    1. I hope so to. Thank you for commenting.

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  2. It's always good to meet people half way imo, thank you for this post

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    1. Even if Tess doesn't maybe someone else will, and they might take it on board. Thanks for commenting and spreading the word.

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  4. Thank you. Your piece was heartfelt, moving and beautifully written. And I'm sorry too, for sometimes being snappy and stressed and less patient than I should have been. Many parents do their absolute best in trying circumstances, and I appreciate that. If someone like you had simply said, "I'm sorry, we're trying", I'd have probably smiled and said, "I'm sorry, too." I'm sure there are many times that parents are too exhausted to do that - but there are many parents, too, whose default response is aggression and a demand for tolerance they don't reciprocate. There are also many, many children who do not have any kind of special need other than a parent to pay them attention and teach them how to behave, and this was who my article was aimed at.
    So thank you again for your thoughtful article and I take it to heart.
    Tess

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    1. You my dear, are a true lady. My sympathy on the death of your dad...

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    2. Impressed you took time to reply Tess, most wouldn't have bothered.

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    3. Thank you for your time to read my apology and your comments. In much of our
      life things are difficult, but we don't mean to make things difficult for everyone else, in fact we are trying to do the opposite. I appreciate your response. If only we didn't all need to get to the point of apologising. Perhaps if my 'I'm sorry' was shared with the many thousands of people reading your article, we could avoid more confrontations in the future? As its been taken to heart, would you like to publish it?

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    4. Your letter moved me so much that I raised the idea of doing a follow-up piece with the Editor. I suggested spending some time with a family whose children have autism, so we could each discuss our views and learn from the other. It has gone to the commissioning meeting so we'll see; unfortunately I have no control over that. I will of course keep you posted. Best wishes, Tess

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    5. Thank you again for your response. I hope the article is agreed. I'm a member of and we have fundraised for the National Autistic Society - I believe they have also written to you offering people you could contact.

      Commissioned or not, I'd be happy to meet/talk/discuss opinions and answer any questions you may have of me. Please do not hesitate to contact me if I can assist you.

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    6. Hi Tess, maybe even if it isn't "approved" for a story , if a family offers you that opportunity you may want to consider accepting. To have that opportunity and insight into "the other side" of raising children with differences.

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  5. I absolutely love your post - until you walk a certain journey you are shielded away from the layers of complexities that exist in that world. Until I had my daughter I too was shielded from it. You post made me emotional for many reasons as it can be immensely stressful in public situations. Your post also taught me something about my daughter - she too speaks/babbles very loud, has sensory issues but I never linked the two - so thank you. Well done Tess for responding too, not everyone I imagine has been quite so measured in a response as Ann has been in this post. Progression and education won't happen if we don't speak so well done both x

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    1. Indeed. Thanks for your comments.

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  6. As a dad of a nonverbal 4 year old who has the strength of 20 4 year olds, I can tell you we have lived all of this. It is frustrating to say the least. People don't understand, and they don't have to understand. They should access before they judge or react. I'm a big guy so ppl usually just roll their eyes to avoid retaliating. I don't retaliate. I just tell them he is autistic. If they don't know or care what that means and press a resolution, I will leave or if they are rude I will win the rude fight. I have triplets and that is difficult. Add my son and when only one parent is there, it is near impossible. Most ppl are polite and understanding. The ones who aren't are jerks in all situations. We don't go to movies. We don't go to church. We do go to eat. There are other choices for you. We'll stay here. Thanks

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  7. Another great post and a fitting reply; my hope is that receives the publicity in equal measures. As another mum of a son with autism I would only apologise if my child had hurt or upset someone but I know the pain and embarrassment too that I feel when out in public when people stare at my child's noises or repetitive, soothing tip-tapping. I frequently try and educate him as to what is acceptable behaviour so he fits in with society but as a friend once said to me, should it be society that tries a little harder to fit around him? What is the definition of 'normal'? Autism is a complex brain disorder and most of these traits are part and parcel of the condition. I think a little more patient, knowledge and understanding would go a long way.

    Kind Regards, Tina

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    1. Autism is the 'normal' for 3 million individuals and their families within the UK. Thanks so much for your comments.

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  8. I love this post. It's hard enough taking our kids out when we know they can't sit still, keep quiet and behave the way others prefer them too. I do try to teach my children how to act in public but it's impossible to expect anyone who has issues like sensory processing and difficulty keeping still to meet all these expectations, especially children. I do try to apologise if my children cause others problems. There has to be a line though, we shouldn't expect children to be seen and not heard anyway, adults need to understand that children have the right to express their discomfort just the same as adults. I can understand if a child is being deliberately disruptive and ignored by their parents that someone would speak up. I don't complain if my kids are being naughty and someone points it out, as long as they do so without insulting myself and my children. But if my kids, or even I myself, were struggling and causing a disruption because of this then it would be helpful if people could be more understanding. Children and adults who have special needs have just as much right as everyone else to be out in public. How will they learn to cope in those environments unless they practise. It wouldn't hurt the general public to learn the difference between naughty behaviour and genuine distress so they know when to speak up and when to stay quiet.

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    1. Thank you for your comments. It's difficult, some places are more 'public' than others and have social rules which we don't fit into. The cinema for example is a place to and watch films so I understand it's disruptive if a child stands, jumps about and squeals throughout the whole movie. The USA recently published that 1:68 people have autism. We love the autism friendly screenings that Dimensions have organised with cinemas. They are great but it would be good to have more. There are 70 screenings on this Saturday alone at my local cinema - they have just one, a single autism friendly screening, not each day, not each week, but each month. Many other venues have just one autism or disabled friendly day a year. These opportunities give people the chance to cope with the environment and learn how to exist in it. It's a shame there are not more of them.

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  9. Fantastic post. In all honesty we rarely go out to eat as our girl refuses to be anywhere she is not comfortable - and she would be acutely aware of other people telling her off and complaining about her inability to sit still and 'chat' with adults like it seems children are expected to do. On the rare time we have been, an iPad is our best friend and I make no excuse for that - it still doesn't enable us to have a relaxing, stress-free social occasion out, which is what many families get to enjoy regularly. A bit of sibling tension or sulkiness does not compare with a child with sensory needs who is not managing in the environment. That said, I do have to agree that there are possibly some parents out there who have a bad attitude and who give the rest of us a bad name - maybe they have their own issues? Who knows. Maybe a bit less complaining from those with 'easier' lives would be nice though.....

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    1. Agreed, we still rarely go out as a family :-( But I can't know what's going on in anyone's else's life and wouldn't consider anyone's life 'easier' necessarily - Different quite possibly. A nut less complaining and maybe just less assumption making maybe. As always, thanks for your comments. X

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  10. Fabulous post Hun and I am so glad that you got a response! Kindness. That is what we all need...

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    1. Popping back to say Thank you for linking up to #ablogginggoodtime 🎉 this was such a great post

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    2. Thanks Catie, appreciated. Xx

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  11. A great post, so clear and honest. I do hope many read it and take it on board, thinking on your words when they're out and about. It is a terrible statistic about autistic people being asked to leave, and then those that stay in to avoid the possibility. Thanks for sharing with #WotW

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    1. Shocking statistics and ones that really hit home when your kids have the conditions. Thanks for commenting/hosting.

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  12. Wow! An extremely powerful post that will make people think which is when blog posts are at their best. Here's to a society that accepts difference.

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    1. Different not less. Thanks so much for your comments.

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  13. A powerful and well written article and a response from tess too was interesting. Our lad has ASD and type 1 so I reading this was interesting. Our little boy we have to do all his care along with the asd side thanks for sharing #sundaybest

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    1. My mum had type 2, a close family friend had type 1. It comes with its own challenges. Thank you for reading and commenting. X

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  14. What a powerful and brave post you have written here. It takes a lot to admit that you have been on that other side. I'm glad you've had a response, let's see whether she takes up your offer... Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday

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    1. I don't think I ever told a child off but my silent grumbling never appreciated what could be going on and perhaps that's part of the point. I'd love to share what's going on underneath so more people understand. Thanks for your comments and yes I guess we shall have to see..

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  15. I agree and disagree at the same time. I agree that as a parent with special needs kids, who are actually pretty amazing when out in public now that they are older but were hard to handle when they were small, I won't apologize but I will educate a person or people. I'm lucky though that most people in my town are pretty respectful and are open to learning about Autism and ADHD. This is where I disagree however. I do not condone in any way, shape or form, another adult snapping or yelling at my kids. I am aware that there are many parents out there who don't discipline their kids and that's not okay either. That is part of the problem though isn't it? So many parents don't correct their children that random strangers just assume the parent isn't doing their job. However, Assuming something about someone you don't know is also a bad idea. But I am the parent. I will be the one to correct my child. If another person disrespects my child, thereby disrespecting me, I will snap right back! I don't care that a total stranger has had a long day or a bad day. They are children. If you have a problem with the child, then address it with the parent. I strongly believe that a parent should be the one to correct the behavior of their child, not a complete stranger who doesn't know that child or that parent from Adam. I am a mama bear though and fiercely protective over my boys. There is a time to apologize to people and I teach my boys that as well. But there is also a time to stand up for yourself and I definitely would have lost it on the lady. If strangers wants us parents to be more tolerant of them then they need to be more tolerant of us. Respect is a two way street. We all have to share the world we live in. we should all be willing to meet half way with each other. Maybe if instead of snapping at the child, she said something to the parent, the outcome would have been different. There is no need to snap at anyone. There are better ways to communicate. In my opinion, she was in the wrong. Address the parent, not the child. I do appreciate your post though. It gives another perspective on the parenting journey. Thank you! #bigpinklink

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    1. I'm very careful to say I'm not sorry for who my kids are at all, but in the same way I'd say sorry if I bumped into someone in the street, I'd say sorry if my kids bumped someone in a restaurant. I'm hoping this article may make people think before they snap at us, or I end up snapping back. Thank you so much for your comments, they are always valued!

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  16. I feel like I spend most of the day apologising for my boy and to my shame I have told him off (knowing he did not understand what I was saying) for the benefit of onlookers. I've only had one negative response - on a train recently some fellow passengers were disturbed by my sons self soothing squeals. I said very sweetly, feel free to move I won't be offended. I probably would if I could. They didn't. Sometimes I think people like to have something to whinge about #MMBC

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  17. Superb post and as said above extremely heartfelt and well written. I think this should be published with Tess's response. #eatsleepblogRT

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  18. Great to see someone represent both sides of the argument! And so glad Tess took the time to read and reply!

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  19. A very empowering post and right from the heart.
    It is so sad that the lack of understanding and knowledge can result in the possibility of an autistic child being asked to leave.
    Lets hope people take this post on board and try to appreciate things from both sides x #MMBC

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  20. Your letter is really moving, beautifully written and so full of emotion from the heart. I do hope you manage to do a follow up article with the newspaper - putting both sides of the arguement as you did was clever and really should be heard more widely
    x
    #WoTW

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  21. My son has multiple disabilities and I feel the stress and strain before he even does or says anything inappropriate. I know it is going to happen and I know there is no way to stop it. We just have to keep learning and keep trying to help him find ways to cope with the world.

    We just have Ordinary Hopes but they are going to take a lot more time and effort to achieve than they do for most people.

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    1. Indeed. Thank you for your comments Rachel.

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  22. A lovely post, we all sometimes need a reminder to put ourselves in other peoples shoes for a moment as we can all be guilty of judging and reacting too quickly, thank you for being such an understanding person and trying to make us be a bit more empathetic to. #bloggerclubuk

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  23. My goodness, how powerful and moving. I'm so glad that Tess took the time to read and reply, and I think that she gave a very appropriate, well considered response. I also think that the idea of her spending time with a family who have autistic children is a good one. I felt so emotionally conflicted while reading this too!! I am totally with you, where you say that you were once the person who got annoyed by the behaviour of children, when you were the childless adult on a journey-I have also been that adult. I have also kind of been that adult since having children-I was on a long train journey, the first time without my children ever, and I had been really looking forward to some quiet time. But there was a family with 2 children, who wouldn't stop moving/shouting/talking, and I did become annoyed still, but had a heck of a lot more understanding because of being a mother myself. In the end, all I had for the parents was sympathy, and I moved seats. It is easy to get angry, but there isn't the need to lash out. I also agree with what Michelle said, that you shouldn't really have to apologise either. But on the other hand, if apologising and explaining the reasons for your child's behaviour educates somebody as to how it is to raise autistic children, then it is worth doing-can you see all the conflict I feel here! A great post, and I'm glad it's getting the attention it deserves.
    #bigpinklink

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  24. Such a brave and heartfelt piece - I too have been the singleton and now I'm a Mum I see how hard it is. I find it hard being out with my toddling girl and often arrange to meet friends in the park where even in the cafe she can run around a bit. My single friends used to find this odd but soon realised that I am trying my best to accommodate everyone...your post is so important to read for us all, sometimes we need that reminder to be a little more understanding at times. Thanks for linking up to #dreamteam Great to have you x

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  25. Great post and brilliant that Tess Stimpson saw it and commented. #bloggerclubuk

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  26. Thanks so much for writing this to help show that there's another side to every story
    #bestandworst

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  27. What an eloquent piece. Well done for writing it and being so honest. How fab that Tess actually replied too. Thanks so much for linking up a wonderful piece, hope you'll stop by again #bestandworst

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  28. This post really got me and was so brilliantly and candidly written. I think it's great that you laid out your thoughts in this way and that Tess actually replied! Thanks for linking up to #coolmumclub lovely x

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  29. A well written post making us all stop and think a bit about how we react to situations. I think its fab that Tess replied and that she is going to do some work to really highlight the misunderstanding around children with autism #EatSleepBlogRT

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  30. There are so many situations when people are judged. You post i hope will help both parents and strangers deal with these situations differently. #EatSleepBlogRt

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  31. More patience and less judgement would be a great way forward all around. Thank you for opening people's eyes with this piece. I hope the daily mail takes it further. #KCACOLS

    Nadia - ScandiMummy x

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  32. Such an eye opening, thoughful and honest post. As parents I am sure that we all feel judged at some point or another for the parenting choices that we make and the approaches that we take with our little ones. So I cant imagine how amplified that must feel when you have a child with special needs, especially in a society that is on a whole quite uneducated when it comes to special needs. Better awareness is definitely needed and your post has really helped open my eyes in a really honest and touching way. Such a lovely post, thanks for sharing it on #MarvMondays. Emily

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  33. This is such a heartfelt piece, I feel like crying. And it's amazing that Tess has read what you wrote and taken it on board. It always amazes me the lack of tolerance we have for the youngest of our society, regardless of disabilities. Every single day I am surrounded by adults who are loud, intrusive, etc, yet that is fine, but a child making slightly too much noise (for example) is deemed so terrible. Thanks for linking up to #SundayBest x

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I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

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