Bad, bad, bad day

For all the good days we have had this summer holiday, it was inevitable that things would only deteriorate as Jude got more and more frustrated with our chilled out routines each day. He loves school. He needs the structure and stimulation that he gets from the virtually constant one to one set up her has there and I obviously can’t give this to him at home because of the girls.

 

So today…oh today, what a day.

 

Things started bad but this has been a pattern for the last, maybe five days, so it didn’t surprise me. I like to take Emmeline for a walk so she’ll have a nice nap plus we can get out in the sunshine for a while at the same time. My dad came over to join us this morning and had suggested we go to a cafe in town that we love but even before he arrived, I’d had an inkling we wouldn’t make it that far. We didn’t. Jude flat out refused to move off the driveway, lying on the floor for extra effect. Anyway, ten minutes of trying to convince him failed and we ended up back at home, him screaming in his room but dad, myself and Emmeline out in the garden to make the most of the sunshine. There is absolutely no point in talking to him in this mood, so I just leave him to it upstairs.

 

He’s bored. I know he’s bored. But there is only so much I can do at the moment with zero funds and frankly, an ever decreasing level of energy for this summer holidays.

This afternoon, I thought he was in a more reasonable mood so promised to go for ice creams by the park. It started out fine, we went and fed the ducks, Jude and Emmeline ran across the Common together and then we walked into town so I could get some money out for ice creams. I said (about 900 times) that we would go to the park first and get ice cream on the way home.

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Emmeline loves running up and down hills at the moment and Jude found it hilarious trying to coax her in the right direction (3rd picture).

But then it went horribly wrong in a way only a parent of a disabled child would understand. Jude started getting more and more anxious about the impending treat and repeated over and over again that we were going to the ice cream van. I tried to remind him that we were going to the park first but by then it was too late and he completely lost it at the entrance of the park. He screamed and cried like a two year old, shouted at me whilst flapping his arms and everybody stared. I just stood there not know what the best plan of action was.  Parents of disabled children have coping mechanisms for every possible eventuality and it’s just a matter of working out which one best suits the scenario you find yourself in.

 

What made this experience worse was a small group of young teenagers who thought it ok to laugh at Jude. Yes, amazing but true. Not all four of them laughed, just one girl laughed. She then looked at her friend who too laughed on command of raised eyebrow. This is my nightmare. I’m in a big park, I have the buggy with Emmeline in and I somehow have to get Jude back to his safe space at home. I’ve no idea how I managed it but eventually, after much walking off by me and even more screaming on the floor by Jude, metre by metre we made the mile walk home.

 

This is Jude in all his glory, crying on the floor.

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It’s rather ironic that this happened today because following a fabulous trip to the park yesterday, I was going to write about how absolutely lovely a pair of teenage boys had been towards us. Jude wanted on a swing so one gave up his place for Jude to have a go. He even agreed to push him! Then when Jude said he wanted on the big swing (big round swing that seats a few people) and I said we’d go on when there were less people there, the teenager said to me “I’m sure they’ll move up a bit for him if he wants a go too.”

It was such an inspiring visit; I almost felt like a valid member of the swing park community at that moment.

 

But back to today…what a spectacle. I felt like a freak show. And following such a day…

I have one request – If you see a child who clearly has learning disabilities and they are throwing a tantrum, please don’t stare at them. It’s a certainty the parent already feels awful enough and could literally jump off a cliff at that give moment. Just help by educating your children that not everyone is the same and that some children speak differently, walk differently, play differently, act differently but everyone is as important as each other.

 

I’m really drained from today. I was feeling confident about all things Jude and it’s amazing how quickly that bubble can be burst into a million drops of stress and anxiety.

 

Dear Bear and Beany
Mummy 2 Monkeys
Hannah Spannah

Comments

  • Kt on

    I feel like we should have trips to the park together. Ny son is just thr same. You never know when it will all go wrong. One day something works. The next it does not. And boy how these holidays have dragged.

  • Caroline on

    I’m so sorry to hear your experience in the park today.
    I hope that ignorant and dare I say it, stupid girl who laughed at your son was put down by her friends.
    I wish you all the best for what’s left of the holidays and beyond. Thank you for sharing your experiences so eloquently. I will read this. to my 5 year old son. Hopefully he will learn something.

    • admin on

      Thank you so much. Really appreciate your support x

  • Liv on

    Please don’t feel the bubble is burst. It
    sounds like you are doing a fantastic job. Far from easy but you are educating us all if nothing else.

    • admin on

      Thank you, I hope what I write is useful in some way x

  • Lisa on

    I feel for you, but inspired by you! I hope I have taught my 2 children to accept everyone in life, they have experienced Down syndrome in the family and a friend with chromosome disorders. It must be so hard as a parent to protect your gorgeous child, whatever they are going through, you are there to love cherish and support them. Who supports you?? Hopefully you have a good network around you, husband, friends, family? I hope you do?! Anyway you are the special one…xx

    • admin on

      Thank you. My mum is very supportive and takes Jude out a lot for me. I am not with Jude’s father any more but he isn’t helpful in the slightest, prefers to put me down at every given opportunity but luckily my partner is great and supports me so much. We’re getting married next year which the children are excited about so lots of positivity going on in our house 🙂

  • chocolateandwineandillbefine on

    I am so sorry about this rubbish day. It is hard enough when my 3 year old has a meltdown in public and everyone is staring and commenting. I do wonder sometimes how anyone could laugh or make comments in a situation like this, it is just plain rude. #sharingthebloglove

    • admin on

      Thank you, really appreciate your words. It’s embarrassing isn’t it when they have a meltdown in public?! It’s character building I’m sure x

  • Memeandharri on

    Oh lovely what a day – it’s funny but I know from about a hour into the day if its going to be one of those days! I have no words because I have no idea how hard it is for you but you survived it lovely. Us Mums have this strength were we can do stuff without even realising how. We really are superheros at times.

    Head up its a new day and I hope its a bit better for you. I think you are amazing. #sharingthebloglove

    • admin on

      Thank you. I have become a very strong, independent person through having Jude in my life and yes I survived the day from hell woo hoo! Thanks for your love, I really appreciate it x

  • Emma on

    What an amazing mummy you are! Days like this stress one beyond belief! Your patience and love for your children is beautiful to read.
    I know this must be the hardest thing to do whilst in this situation, but the girl who laughed is most probably laughing because of her own inadequices. She lacks the confidence and happiness in her heart to be compassionate. It’s not an attack on you, but something that’s been missing in her own life. Poor girl probably hasn’t had a loving mother like you! Let other people cope with their insecurities and you give all your energy to your family. Preserve yourself.
    Thank you for sharing this. We all learn from understanding what it is like from your perspective
    Emma x

    • admin on

      Just re-read your message for the second time. Thank you and yes you’re right she is probably filled with teenage anxieties and will one day (hopefully) realise how to be compassionate. Thanks for your support, A x

  • Jane on

    I would be interested to know how you would prefer passers-by to respond? I would probably ask if you needed a hand in any way, but never know if an offer of help would be welcome or if it’s intrusive?

    • admin on

      Hi Jane. How do you want people to respond when a toddler has a tantrum? You’re tired, upset, just want to disappear. To be honest, I love people asking if everything is ok or even attempting to talk to Jude (brave people!) what I don’t like is people staring, pointing or laughing. As I mentioned in the post, it just consolidates your already negative feelings about your own situation. It’s demoralising. Just a smile is fine, or an “are you ok?” is all cool. Just nothing negative x

  • Jane on

    Good to know – never know how best to help – I always feel like giving someone a hug, but not normally appropriate!

    • admin on

      That would be an awesome thing to do!

  • winnettes on

    It is sad that those teenage girls were so unsympathetic. One day I suspect they will experience the embarrassment of a public tantrum and suddenly understand. The boys from the day before sound amazing. Their parents should be really proud of them and I hope one day that is how my children will be. Fingers crossed tomorrow is better. Bring on the Autumn term.
    #SharingtheBlogLove

  • readandrated on

    Oh that really does sound like a tough day 🙁

    I host Charity posts on my blog coffeecurls.co.uk using #charityTuesday and would be delighted to run one for you require Happy Days whenever you are ready x

    • admin on

      That’s really fantastic thank you. I can email you details of the charity this week if that’s ok? A x

  • Katy – Hot Pink Wellingtons on

    Oh, I’m so sorry to read about what sounds like a really difficult day. I think the nasty behaviour always cuts deeper when you’ve had a lovely experience somewhere so recently – I had a similar incident of nasty older children in a park recently that really upset me, and I think I took it harder because the previous week had been the opposite – an older boy being so absolutely lovely with my toddler. I try to focus on the kindness of people rather than the nastiness, but it’s hard when you’re in the moment. I really hope that I can raise a child who is compassionate and sympathetic towards other people. Well done for getting through it – sometimes that’s all we can do on those difficult days, and we should be proud of ourselves for that! Thanks so much for joining us at #SharingtheBlogLove – we’d love to see you back next week!

  • dearbearandbeany on

    I’m so sorry to read this, it’s never easy when you have a bad experience with other children. I always find it difficult to manage because I never know how to handle them and I really want to say something, but then something stops me. I hope that more people are like your first visit than your second one. Thank you for joining us at #SharingtheBlogLove x

    • admin on

      Thank you 🙂 x

  • RaisieBay on

    I’m sorry you had such a rubbish day. I never take any notice of what strangers think, I find that if you blank them then it can’t make you feel any worse. I bet Jude didn’t really take any notice. My girl will throw a tantrum still at 11 yrs but I’ve learnt to pre-empt them. In your situation I would have given in to the ice-cream first. I know most parents will think that you are just teaching them that it’s right to give in to them, but with children like this, they don’t learn like other children, I think it’s best not to let it get too bad, especially in public. I don’t give in once the tantrum has started, but if I think she may have one then I just explain that I’ve changed my mind so she doesn’t think she’s getting her own way.

    • admin on

      Jude wouldn’t understand any explanation as to why I would change my mind. He was also in one of his mindsets that if we had gone and got the ice cream, he would have then said he didn’t want it, thrown it and had another tantrum. It was a lose-lose situation for me! A x

  • Michelle Murray on

    I’m sorry you had a rubbish day 🙁 I really don’t like it when strangers get involved even just a look from someone can make me so angry. It does sound like you are doing a fantastic job parenting Jude so please keep your chin up – even on the bad days.

    • admin on

      Thank you. Really appreciate the comments and support 🙂 A xx

  • Our Best and Worst! – Living with a Jude – hexmumblog.comhexmumblog.com on

    […] about it on my blog and it had an amazing response from people saying how horrified they were (http://livingwithajude.co.uk/disability-issues/bad-bad-bad-day/)  Basically, Jude had a massive tantrum because of wanting an ice cream before going into the park […]

    • admin on

      Hi Sorry, I can’t read your message for some reason. Could you copy it and email it to me at alicesoule@aol.com

      Thanks and sorry again! A x

    • admin on

      Ooh the link, thank you! xx

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