Thursday 21 June 2012

We are NOT OK.

Yesterday, Tim & I expressed our sadness to some friends that many people close to us haven't been in touch about River's diagnosis. Quite a few friends have sent us virtual messages of support or virtual hugs, but there are many more who have kept very quiet. In fact, many people haven't been in touch at all since we began this emotional journey. 
One of our friends made a really valid point that I hadn't considered: I often write about the different techniques we use with River, the constant battling to get appointments, what happens at various appointments and lots of proactive, practical stuff. He said the blog gives the impression that we're focussed, driven, and generally sorted. Like we're coping just fine. He also said that people can feel awkward about these things, and not know what to say.

So maybe you're reading this blog because you're a friend or relative of ours. Or maybe you know the parents of an autistic child. Or maybe you're a teacher or therapist of an autistic child. Regardless, I just want to open up about a few things that perhaps I haven't expressed very well in my other posts.

1. We are NOT OK. Two days ago, we were told that our baby has a lifelong neurological condition. There is nothing OK about that. Yes, we understand we need to think positively. Yes, we're hopeful that River will be high-functioning, learn to talk, go to the village primary school- but nobody can tell us whether that'll happen. There is a fair chance that River may never speak, or speak very poorly. He may have to go to a special needs school. Right now, and probably for the next few years, we will be in limbo. We'll try to focus on each day, but ultimately we will worry every day what the future holds for us and our baby. It has only been 6 months since we initially realised something was wrong. We haven't got our heads round it, we are still grieving.

2. We feel lonely. We feel caught between two worlds. There seems to be an ever-widening gap between River & his peers, & it's scary. We're worried that our friends will ditch us as River isn't very good company for other children. Various professionals have recommended special needs groups to us, but we don't feel we fit in there either as River is very physically able & looks 'normal.' We've discovered a lovely autism group, but the children are much older than River. So therefore, we feel lonely.

3.We need a hug. I'm not talking physical affection, I mean a metaphorical hug. If people feel awkward & don't know what to say to us- it doesn't matter. "Thinking of you." "Sending you hugs." "Xxx" We don't need a big speech from people. We just need to know that you care and are here for us.

4. We feel guilty. So River has Autism. He's not sick. There's no threat to his health. There are so many people in a worse position than us. We have a beautiful child, a nice home, Tim has a job, we're all healthy. There are families out there without a roof over their heads, in hospital with a sick child, who can't afford to feed their children-what right do we have to feel so self-pitying just because River's autistic? This fills me with guilt.

The last two days have been spent either crying, fighting back tears, or pouring all our energy into research research research. It occured to me earlier- who knows? Who knows how devastated & crushed we are? Is it their fault for not asking how we are, or our fault for not reaching out & asking for help? I don't know. 

But there it is. We're not fine, we not doing an amazing job of coping, we're struggling. Struggling with our sadness & fear.

14 comments:

  1. Still not knowing what to say but sending hugs as always. xxx

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  2. Thanks John, the hugs are very welcome, thank you Xx

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  3. Gem, I think your friend was right you guys come across like you are very focused and coping well with this. In a way your friends will be relieved to hear the truth about how you're feeling because now maybe there is something they can do to help you guys. In your blog you are always very busy and I imagine that people don't want to put any extra pressure on you. Your friends are there for you I'm sure and I'm sure they will be glad you've reached out. I haven't been to see you guys cause I know that my two are too hyper and it upsets River and that's the last thing I'd want to do. I have however started working so if you have time and fancy a coffee I could meet you and River at lunchtime wed or thurs next week if you're free? Sorry if I've been crap kate xxxx

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    1. Hi Kate,
      Lovely to hear from you. You're right, River gets upset when most kids come round. He does like going to the motorway bridge & park though (where we met up the first time) so we could always meet up with the kids there if you like? (If it ever stops bloody raining!)I'll put this in a Facebook message to you in case you don't see this Xxxx

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  4. Two of the most helpful, most knowledgeable, supportive, kind, and good-humoured people I've ever had the pleasure to work with : http://www.autism-programs.com/staff.htm : They really will be able to 'help' you guys with this, and the little one too !!!

    Also, the National Autistic Society has a helpline which I know other parents of children with autism have found useful, and have ended up working on it themselves !

    You'll be alright you know ... it's different having an autistic child but it can still be wonderful :)

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    1. Thank you, I shall check out that website :)

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  5. Hey, I've been reading this & you come across as handling this so well that I haven't wanted to put any pressure on you with a comment, weird as that sounds. I'm sorry you're going through this though, not that River is River but that you're having to make this tough journey that you weren't prepared for.
    River is poorly, just because his condition can't be seen in an X-ray or treated in a hospital doesn't mean he's not poorly. It's not life-threatening but it is life-changing & you'd be absolutely nuts not to be sad about that. You're an amazing mummy who's worried about her little boy, sadness over an unknown future is completely normal I'd imagine. I have been thinking about you though, & wondering how you get on. If you weren't so far away we'd come hang out. Love Amy & Rowan

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    1. Thanks Amy, that's really lovely. It's nice to know my feelings don't sound awful to people on the outside! It is a shame that I don't live locally any more. Lots of love to you guys Xx

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    2. They sound completely normal. Every parent wants their child to have the easiest, brightest future. You're in the position where you know that River is going to face some sort of challenges that Joe Average wouldn't, & to make matters trickier you don't know what those challenges might be (he could be very high functioning or need additional help) so you'll worry more. & you're not saying you don't want River, that you don't love River, you're saying you wish he & your family didn't have to go through this. I'm positive in time the fact that River has autism will be muted, & you'll be able to celebrate in River being River. Right now it's very new, very raw & very unpredictable. You need time to grieve, then time to accept. Don't be hard on yourselves for feeling sad that your son has Autism, guilt is unnecessary & unhelpful. Let time work it's magic, you'll get there.

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  6. For me, it's the cluelessness about the future that I lose most sleep about. As I mentioned via face book you are not alone. My hairy husband or I would be free to talk to you any time you want/need. I have also found the NAS a very useful resource. hugs are freely sent from the cooper household to you all :-) x

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  7. I've just read this old blog of yours and it sums up our situation just perfectly. I don't think friends and family on the outside really appreciate how hard it is and how down we can get.

    I was out with friends recently and they were talking about a mum of a downs syndrome child and saying "I really don't know how she copes, it must be so awful, etc etc". And not one of them seemed to relate this back to me. I just sat there in stunned silence. Our kids don't look any different, so people forget.

    I also worry that my son won't make friends and that we will loose the friends we've got because of his autism, but I've also found a new group of friends who have kids with additional needs and it's lovely to feel accepted and talk to people who know 'where you're coming from'.

    My daughter is NT and I sometimes feel I live between the mainstream world and the special needs world, not really knowing where we belong!

    Keep up the good work.

    Lorraine x

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    1. Hi Lorraine,
      I'm sorry your friends struggle to see what you're going through. You're right that it's so much harder for people to understand an invisible condition like autism.

      The group of parents of children with additional needs sounds brilliant :)

      Gem X

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