What would I tell you?

I have been asked before, “if you could tell parents who have just received an Aspergers diagnosis one thing, what would it be?”

I can’t tell you just one thing. One thing is just too hard and I am not an expert. One thing doesn’t cover it all, not even close.

So instead I have a list; a list of what I would tell a parent who has just received a diagnosis – after we had shared a gin of course.

What do I want you to know after an Aspergers diagnosis

I want you to know it’s going to get better.

I want you to know that you don’t need to read everything, or listen to everyone.

It’s not your fault.

It wasn’t something you ate, or drank, or did, or wore, or watched, or thought, or breathed, or took, or gave your child.

It wasn’t anything you didn’t do either.

It isn’t your child’s fault either. They aren’t naughty, or disobedient, or bratty.

It won’t help if you smack them harder, yell louder or take away all their toys.

It’s ok to grieve and be sad. It’s ok to cry and feel frustrated and angry.

There will always be people who don’t understand. Sometimes those people will be your family and friends.

I want you to know there will be good days. There will be hard ones too, but the good days will come back.

There are many therapies and strategies out there. Not all of them will work for your child. That’s ok, you will find what will.

It’s ok to ask for help and have time out, away from your child and away from your partner too.

I want you to know you are not alone. There are many of us out there and we give bloody good hugs.

Your only job? To love your child.

The rest will come.
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Comments

  1. I’ve been thinking about this too.
    I think parents feel like they’ve lost something when they go through diagnosis. But it’s nothing they wouldn’t have lost anyway. The version of their child that they dreamed of, would have been something they had to grieve anyway. This is just the rip-the-band-aid-off fast version of maturing into parenthood..
    Your child is the same person now as they were before they were stamped. That’s what I would say.
    Special needs parents are the best, most open-minded, loving, genuine, intuitive, relatable people I know. Having a special needs child is a shake up, wake up, that leaves a beautiful impression behind.
    That’s what I would say…
    oxox
    Hannah recently posted..A New VanityMy Profile

  2. I read this and have been thinking about it a lot.
    Thinking about why i LOVED it so much.
    I think I have worked out that it is because so many of these things are things that parents of children who aren’t on the spectrum struggle with too.
    I love that the focus is on letting go of the guilt that we have as parents- whether our children have special needs or not.
    And learning to see beyond all of that and just L O V E.
    My very favourite thing of all.
    And in the end it is only thing that ALL of us need.
    Beyond diagnoses, tags, explanations, therapies and all the rest of it……
    The only thing we ALL need to do as parents is to LOVE.
    xx
    Ruth Bruten recently posted..On the WeekendMy Profile

    • Thanks so much Ruth.
      The guilt eats at you, it’s so hard to move past. But once you accept it is what it is, no more, no less, then it becomes so much easier to just focus on the love again. And that’s got to be the best outcome for everyone xx

  3. I LOVE this – so wonderful to focus on the most important thing! *Love* your child and the rest will come! So true!
    Katrina Moody recently posted..Open Letter: Please Don’t Try to “Cure” My Child with AutismMy Profile

  4. Steve Fouch says:

    Thanks for this – you crystalise some of the key things we have had to learn.

    I would add that the label ‘Aspergers’ is just a name for describing our son being himself. He happily own the name as a sign he is something special and does not see it as a disability (nor do we).

    It’s not always positive, but the key thing you say is that it does get better, and you find strategies (as parents, as a child with an ASD diagnosis, as siblings) that help you cope. And above all, as everyone else is saying, hang on to love – your child is still your child.

    • Thanks Steve. I agree with you completely – it’s just a label, a describing word. And like your son, it’s something that Poss is reasonably comfortable with, which I love! She knows she is different, but then again – so am I and so are you, all in our own ways!

  5. Loved this post, loved it. You must’ve been in a clear and peaceful place to put that together. It’s the kind of thing one needs to print out and tape to the gin shelf. Xxxxxx

    • Thanks lovely xx
      I was in a good place, although this post came after watching a parent on twitter blame themselves for the diagnosis.
      I know it’s hard to move past the guilt, it’s the same for all of us, but there is nothing any of us can do – we are where we are and all we can do is look forward.
      And yes, taping it to the gin shelf is a BRILLIANT idea!

  6. Thank you for writing this post! It’s so helpful to read something like this when you’ve just had your world shaken up. We’ve had a recent Asperger’s diagnosis for our Miss 8 and are feeling a little lost – this wasn’t expected, confused – too much/not enough information for us to take in & frustrated – that everyone expects us to automatically know exactly what to do for her but we have no idea how to help her… Reading all your blog posts are so very helpful, please don’t ever stop!

    • Thank you so much Melinda for your comment. It made me all teary last night, as I remember exactly where you are at. Please don’t hesitate to sing out if I can help in anyway and I wish you all the best over the coming months. Just remember – she is still your little girl – that will never change. xx

  7. Beautiful post Renee. Something I really needed to read today. I have resisted seeking a diagnosis for a long time as I didn’t want a stamp. I’ve realised recently that the stamp is insignificant. Finding a way for my little boy to cope in his scary world is the most important thing. If a diagnosis helps us find coping mechanisms, then it can only be a good thing.
    Justine xx

    • Oh Justine… It can be so scary, so overwhelming, but you are right. It’s not the label that’s important, it’s helping your child be the best they can be. As a mum, it’s our most important job. You are a wonderful parent, you both are, and he will be fine – more than fine, just you wait and see. xx

  8. Kirsten Dietzel says:

    My son was diagnosed before he hit high school. He was a beautiful child, heart of gold. Gentle as anything. Being autistic hasn’t changed the way we thought of him. His is still beautiful with a heart of gold and gentle as anything. It meant that we now had the tools to get him to achieve the best he can be. When he was in his first year of high school he had a few ‘special ‘ friends, but none ever came home. By this year for his 17th we had 10 lovely young people at our house for his birthday. As a mum I couldn’t have been more prouder and yes he was the perfect host.

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