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.