Tuesday, 24 February 2015

February has made me sad

February-illustration-Elsa-BeskowSo this month has been hard, very hard. My son has been in and out of hospital with stomach pains which in turn has led to some very severe meltdowns. In fact it has been going on since January. He is exhausted and so are we.



hyacinth It took a while for us to understand that it was his tummy as he was simply running around screaming but then started to show us by putting our hands on his belly. Poor Little Bird but such a clever boy for learning how to communicate his pain.  The hospital have no idea, nothing serious by their observations, no temperatures, no rashes, no swollen areas, nothing on x-ray or ultrasound. But still LB runs around clutching his stomach and is crunched over in pain. Treated for constipation but still his hurt continues. And how he has endured all these tests which are not easy and have raised his anxiety levels so in fact that is what we are fuelled by, pure anxiety in layers that I cannot peel away.fading-roses He was quite poorly on Sunday morning and awoke at 7am screaming. In a meltdown it is hard to console an autistic person and they have to run their course. All you can do is be there and make sure they are as safe as can be. Of course, my neighbours who initially indicated they were aware of autism thought they would help matters by banging on the bedroom wall. I was furious that our parenting could be misinterpreted but this is the ignorance you encounter and they are the first people to do so to us. pink-hyacinthLittle Bird for all his pain and trauma has been trying so hard. Showing us that he wants a bath to ease the pain and for smiling at the hospital. It has taken so much out of him and I wish his pains would go away. When your child is pretty much non verbal it is so much guess work and you need to be so switched on to every behaviour to try and understand what is happening. Doctors are pretty much clueless where autism is concerned in our experience and for all his hospital notes we have still turned up for tests without them being aware. The number of doctors in the past month who look at us in a puzzled manner when he say he won't lie down to be examined as he will just freak out at being in a position of lack of control. There have been some good practitioners but mostly we have left feeling powerless and isolated. Where to get help from? What to do?

It gets incredibly frustrating and the care on the NHS is very limited that it forces you into routes of looking at alternative medicine and therapy which is a complex , expensive and potentially risky if you do not understand. Who do you trust? Lots of people want your money. Hundreds. Thousands. How can you trust what they say? How can you trust an NHS too that have no money for autism treatments like sensory occupational therapy or highly over sensitive hearing. You walk a lonely path and a late night trawling the internet for solutions.

But Little Bird I am proud, you've tried your best and more to communicate and I'll help you however I can. Mummy xxx


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2 comments:

BavarianSojourn said...

So sorry to hear what a rough month it's been. I really hope you get some answers on his tummy problem soon, and that it goes away, poor little chap! :/

Happy Homebird said...

Thank you. I think he is getting better now. Whatever was causing the problem seems to have gone away x

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