My Socially Awkward Life

Autism Mum You Are Not Alone

My Socially Awkward Life

So you might have come across this post by accident or maybe I promoted it through my social media channels and maybe you’re wondering ‘autism mum you are not alone’? What’s that got to do with interiors? Well the truth is absolutely nothing! BUT and there is quite a big but I do have a socially awkward life. And I’ve realised that many of you do too. The truth is I have 3 wonderful sons, one is brunette, one a red head and one is blonde with brown eyebrows and a ginger beard (bless). All three are dyslexic, two are autistic, one is also diagnosed with OCD and PDA (Pathological Demand Avoidance). God knows how myself and Mr RFW created three so completely different children, we obviously have some pretty crazy genes. (At this point you might think what a crap parent but please read on before you judge me).

The truth is that I love my boys to bits, they are clever, funny and so loving. I would fight to the end of the earth to help them. And the truth of the matter is that I do and have to most days. In fact it’s almost a full time job in itself. You are probably still wondering why I am posting this and I promise I will get to the point as quickly as I can.

 

I once sold a set of bedroom furniture to a lovely lady as a present for her daughter. She was so nice and we spent quite a while chatting as you do about all manner of things. Putting the world to rights. Towards the end of the conversation she mentioned that she had very specific delivery instructions. Her daughter suffers from anxiety and can’t cope with noise and lots of people. So I made sure the delivery was as quiet as possible for them so that her daughter could have an enjoyable time when the furniture arrived with them. This is just one example of many conversations I’ve had over the last year or so. And the common theme running through these chats is how alone we feel and that there is no help or support out there for us or our children.

 

It got me thinking that I really wanted to raise awareness of the subject but I wasn’t really brave enough. We all want to be the perfect parent. But it’s amazing what happens to you when you carry the label, ‘you know, the one with the naughty child’. You actually start to believe that your child is naughty. That you are in fact deluding yourself. That there isn’t anything more to this than just naughtiness. And therefore the only reason they are naughty must be because you have done something wrong. Welcome to my socially awkward life.

 

So one wine fuelled evening brimming with Dutch courage and wearing my brave pants I posted a picture of my boys on Instagram. And told my followers a little about my socially awkward life with them and the response was off the scale. So many people were in the same position or knew someone in the same position. And everyone was so supportive of one another.

 

The next day sadly my bravery pants evaporated and I’m embarrassed to say I deleted the post. This wasn’t fair to the lovely people who had taken the time to post a comment. And I would like to sincerely apologise to those of you who did. I’m feeling a little braver now. I’ve realised of late that there are so many parents of autistic or anxious children out there that feel alone and lost in a system that makes no sense and find it hard to navigate just like me.

 

No one gives a new parent a handbook on how to be a perfect parent and one certainly doesn’t exist for parents of children with disabilities (Maybe I should turn My Socially Awkward Life into a book). So we tend to hide from the outside world for fear of judgement. As parents of children on the spectrum, we ourselves become socially awkward. BUT I now realise that unless we are all a little more open about it things can never change. Things won’t improve. And unless we raise awareness there will be new parents going through the same as I have in years to come. Or even right now. I want to help in some way, however minuscule.

 

So this is the reason for the Socially Awkward section of our blog. To raise awareness and to share my journey as a parent of autistic children. And if I help just one person then it worked. And if I don’t, at least I tried. It’s also to celebrate being able to put myself out there again after years of fighting for help for my middle child. And I promise to share more of that soon.

 

For now I just want to say that is you’re a parent with a socially awkward life,  if you’re struggling with getting a diagnosis. Or can’t bear another moment alone in the school playground watching the whisperers. Or you just feel that today you can’t do it please drop me line or comment below. I will always answer and you will at least have the comfort that you are not the only one. With one in every hundred children currently being diagnosed there are thousands of us navigating the Autistic world everyday. Both those on the spectrum and the people that care for them everyday.

 

For now lets all agree to look out for one another. The next time you see a flustered mum outside Halfords trying to put a screaming bundle of toddler into the car whist dropping her breast enhancing chicken fillets on the floor and kicking them under the car. (this was me by the way) Rather than tut and  make a rude comment about her parenting skills, give her a smile or an offer of help. You never know you might just make her day. Let’s not spend our socially awkward life alone. Lets be proud and shout about it! autsim mum, or dad for that matter, you are not alone. x

 

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4 Comments

  • Reply Sheila Geddes July 7, 2019 at 7:25 pm

    I’ve read the your article in today’s (07/07) Sunday Mail You Magazine. Every word could describe my life with my fabulous 19 year old daughter Katie. My life is a constant mix of fighting and worry. Katie has also been diagnosed with PDA and also has psychiatric problems including anxiety, depression, misophonia and phonophobia. I fear for her future so much it hurts and I cannot relax until I get sone clear pathway for a future that she wants to live in. Every day is a battle to give her something to want to live for and it is exhausting.

    • Reply Rachel Edmonds July 8, 2019 at 9:39 am

      Hi Sheila, thank you for leaving such a heartfelt comment and sharing your journey with me. It seems we lead such similar lives. My middle son has PDA, OCD, anxiety and depression too and my youngest also has OCD and suffers from paranoia and anxiety at times too. I also struggle daily to find anything to inspire him or spark a tiny flame of interest. I think for me the biggest problem is that not many professionals have heard about PDA and don’t really know how to handle it. I just feel as though I am banging my head against a brick wall when it comes to getting help. I’ve become disillusioned by a system that talks a good talk but sadly doesn’t walk the walk. It’s just an endless battle isn’t it? I hope you get the help your daughter needs, you sound like an amazing mum and so strong too x

  • Reply Catherine July 27, 2019 at 10:19 pm

    Hi Rachel
    All the things you describe about Tom I experienced with my oldest Son as a single despairing Mum of two. Late diagnosis school refusing,no education, meltdowns, smashing and throwing things, bright lights, foods and rough clothes etc. I did not leave his side or sometimes the house very often for many years.
    I like you feared for the future until he was mid to late 20’s when things fell into place. He is now famous musician and very independent. We have a wonderful relationship and apart from the bouts of depression he experiences he is as happy and more successful than most. This is after I was told by Proffesionals that there was nothing they could do for him.
    Not quite all a happy ending though as the effect on his Brother’s mental health has been catastrophic. Living with that kind of chaos and fear as a child is permanently damaging and my guilt of not being able to protect him from that is awful. As an adult he now struggles more than his Brother.
    I’m happy that this is not the case for you but siblings need so much support and protection too.
    Like you though it’s not a sob story. I have 2 amazing, kind and wonderful young men for my Sons and a lot of my friends are envious of the love we all have for each other. I would have never imagined that.
    Best of luck to you and your family. Although it feels like nothing works now, and it’s one big battle, if you love them and stick with them one day you and they will reap the reward.

    • Reply Rachel Edmonds August 4, 2019 at 12:03 pm

      Hi Catherine, thank you so much for leaving a comment. I can’t tell you how much hope your words have brought not only to myself but my family too. I keep reading your comment over and over again in the hope that similar will happen to us. Like you we are a very united family but I do worry about everyone’s mental health too. It’s not always easy to keep a balance and like you say living with the chaos does take its toll. I find I am very tired all the time at the moment both physically and mentally but as you say I stick at it in the hope we can turn things around. You sound like an amazing person and a wonderful mum too. I wish you all the best for the future.

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