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  • Sometimes it’s OK to say it’s a bit shit

    There was no beating around the bush. Pretty much as soon as we’d all sat down, the paediatrician confirmed it;

    “yes, Joshua has a clear diagnosis of Autism Spectrum Disorder”. There. No messing, no tip toeing around it. And it was no huge surprise to Sam and I, nor to his Grandparents or his nursery teacher, all of whom came to the meeting too. So why did I feel the way I did.

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    I knew Josh was autistic before we even dared to utter the word. You know your own child don’t you, and especially as a Mother. But for some reason this kind lady confirming it all, and with her typed up report in front of her literally spelling it out to me in black and white, let loose a whole load of emotions in me. The main feeling I felt was simply “this is shit”. Because it is.

    Before anyone reminds me, I know that people are in far worse, more distressing situations. Josh is a physically healthy child and you can’t wish for more than that for your child. But, all I could think about was my baby, the one who made me Mummy (and I’m still waiting for him to call me that) was going to have a life different from that one I envisaged.When you’re pregnant, especially with that first child, you spend half your time day dreaming about this little person growing inside you. You imagine how they’ll look, what they’ll sound like, who will be their little friends, who will they become as adults.

    And even the first year of the babies life you’re still in that bubble, awaiting the milestones, the all important “firsts”, the babble.

    You don’t for one second think they may be born with a complex and often, misunderstood, condition that will always be a part of them (there is no “growing out of it”) and that will make their lives different and, heart breakingly, more difficult.

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    So with complete honesty, I can say that when she said that to us I just sat there and just thought this is so shit. I didn’t want to be sat in this centre for children with complex needs. I felt angry. I felt like “why my boy” which I realise sounds so dreadful, but in that moment that’s how I felt. I kept thinking of my many friends with kids of similar ages and feeling such a pang of reality that our path was going to be far different from theirs. The lady continued to talk to us and started going through the leaflets and literature she had put together to send us home with. Because that’s what happens;

    You are informed your child has a life long condition that is vast, complex and difficult to define (there is no spectrum anymore for this very reason).

    You’re given some leaflets and told you’ll get a follow up phone call in two weeks.

    You’re discharged.

    Yep. Thats it; off you go, good luck. As kind as this lady was, (and she was. When I let my defences down and said to her I was barely listening to what she was saying because I was overwhelmed, sad and pissed off, she welled up and said her child had also had this diagnosis over ten years ago – she said “I get it” and I really knew she did), she had to admit there was little more they did there for us.

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    It seems that I will have to continue to fight the good fight. And I will. It’s quite astonishing that the system repeatedly said to us that Early Intervention was key; in fact we actually were lucky to have a diagnosis for Josh when he’s still so young (he only turned 3 in November) and I think we achieved that because Sam and I didn’t let up – we pushed the GP, Speech and Language, Health Visitors and so on; we made our voices heard. And yet the after support was pitiful.

    Once I found my voice after the initial statement of Josh’s diagnosis the first thing I asked about was speech therapy. “We don’t really do that” was the response. I looked at his nursery teacher with a WTF look. We already have a Speech and Language Therapist going in to observe him later this month – she last observed him in September so I imagine she’ll find his progress quite remarkable as he’s come on in leaps and bounds. But that was it; she’ll observe, she’ll write a report, most likely tell me to flashcards etc at home still and then “give it 6 months”.  Begrudgingly I’ll do this; the lady from Josh’s nursery said this may actually be a good path for him as he’s done so well in the last six months so who knows what the next six months may bring. I just felt a bit annoyed that there was no specific therapy on the NHS for these children who struggle with speech and after being told early intervention is key on repeat it seemed a cruel blow.

    I didn’t come home and cry for hours on end, which I think my husband feared I might do. I felt almost a numbness. I cried when my Dad sent me a beautiful message and I cried as I stroked Joshs hair when I tucked him into bed for the night. I think it’s going through the motions. This is no huge surprise, I knew they’d confirm this. But it did do something to me; it hit me with a real dose of “Wow this really really is happening, this is how it’s going to be for us”.

    The most important thing though, is of course, Josh. And Josh is still Josh. A diagnosis, a report, a label, doesn’t change Josh. He’s still Joshy Bear who loves Hey Duggee, who loves Pom Bears and who loves to read Dear Zoo pretty much every single night. He’s still his happy self. He is already embracing his autism because he loves his little world; he loves doing his own thing, he loves chatting and singing away to himself. He’s learnt to tolerate his little friends at nursery or other kids at soft play, and if it becomes too much he’s taught us to pick up the signals and remove him from he situation. He loves to go the farm and run about for hours on end. He loves his aunts and uncles who have learnt to almost ignore him rather than fuss him, because in turn Josh relaxes in that sort of company and repays them with hugs and affection.

    Josh is a very happy child. And I’m proud to say that’s down to his Dad and me.

    None of us can really know what the future for our kids and for us it’s even more vague. But Josh will always be loved, always be encouraged, and always be celebrated.

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    For me, as a Mum, this is a bit of an overwhelming time, and that’s why this blog post is so raw. But I started Beauty Baby and Me when Josh was growing inside me, and back then I promised nothing would be sugar coated on my blog; I’d always be honest. And I always will be.

    PS. When I collected Josh from nursery yesterday, one of the girls who works there (and they’re all amazing) gave me a massive hug. She didn’t make a fuss or come out with some big speech, she just said she wanted to hug me. I will never forget that hug or that moment of kindness. I’m not sure she even knows I blog, let alone reads it, but I will be forever grateful for that moment cause I needed that hug. I know it will be those sorts of simple small acts of kindness and understanding that will give me strength during the testing days.

     

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    1 Comment

    1. February 14, 2019 / 2:27 pm

      This reads as such an honest , from the heart post!! I’m glad you got the hug!!
      Someone loved this post so much they added it to our #blogcrush linky

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