Blogging

Blog Everyday August – Day 15 – You Need To Read This…

By starting up my Small Steps Amazing Achievements linky I have met some amazing people and have started to build some twitter friendships. Believe it or not I was trying to avoid twitter as I didn’t really understand it, I still don’t, but my work colleagues talked me into joining and so far its been a very positive step.

I have met a very lovely lady called Orli and she blogs at Just Breathe. One day I invited her to join my linky and we have been building a friendship ever since.

She has asked me how I’m always so positive on my blog, how I can always find good things to write about, where are our negatives. She has discovered that I’m lying.

To be honest at this moment in time I’m at a very low point and I’m feel like I’m getting stuck in a very bad rut. My life is far from rosy and this is where my head is at the moment.

An outsider looking at Ethan will see a happy little boy who looks totally ‘normal’ but the reality is much different. My son is non-verbal therefore he can’t communicate with us easily. We are starting to learn how to use PECS which is an improvement but it has it’s limitations. We have no idea if Ethan will ever be able to talk to us with any meaning.

My son isn’t interested in food, he doesn’t know when he is hungry. If we didn’t check if he wants food, he wouldn’t eat. He also can’t feed himself with a spoon and shows no interest in using a cup.

He has no fear, when taking him to a playground or soft play we have to be behind his every move, making sure he doesn’t fall off of the highest point. We live on our nerves at all times and have already witnessed Ethan falling from a very high point, landing on his head in a roll and somehow being OK. I really did think he had broken his neck, and all because he didn’t know how to deal with one of the other children crying.

Don’t even ask about potty training!

Basically my list could go on and on but at this moment in time I can’t see how Ethan will ever live independently. This therefore means I cannot die, I have to be around to look after my son, I have to somehow work out how to be immortal!

Throw all of these woes together with my guilty feelings of I’m not doing enough, I’m not good enough, this is all my fault, and we have a lovely mix of emotions to deal with.

So I have made Orli a promise, I will be honest with how I’m feeling and share our life warts and all (within reason ;0)). She has also created a linky so we can unite in our doom and gloom because in life there are also tears.

Dreadful Days, Orli Just Breathe

3 Comments

  • Steph Curtis

    It’s a rollercoaster. Even if he stays non-verbal (which I imagine is unlikely, even if it seems so to you) you will find times to be amazed at his achievements, and the little things will matter so much more to you. It’s all good and bad 🙂 Not trying to be patronising, just getting how you feel right now as I’ve been there. Look after yourself, take time to de-stress somehow x

  • Steph Curtis

    It’s fab that you can be so positive most of the time, but that you can also accept that everyone needs some down time and to admit not everything is always great… I like to think I’m a happy person generally too, but we can all get bogged down with lots of ‘what ifs’ or what if nevers’. That’s why it’s great to share! Nice to find you via Orli’s blog… hope I can meet you at BlogFest too!! 🙂

  • Orli D

    Honestly I don’t know what to write. That’s why I didn’t comment last night. I can understand some of it, yon has many traits that are similar to Ethan (except the non-verbal) and are what made the school suspect he is on the spectrum. The drinking out of a cup for instance. Wow, that was a tough one. He had a cup-phobia. Seriously, every time we tried to offer him one he would freak out. Big time. He learned to drink out of a cup just a few months ago (and he is a year older than Ethan), and to be honest, still isn’t very good at it, or like it too much… Food is an issue, playgrounds are an issue…
    On bad days, my fears are just like yours. I feel guilty for my genes, for not doing enough, for not diagnosing sooner, I feel I let him down each and every day. So I write, I eat chocolate, I cry.
    I think August is a bad month, with its added pressures of having to have fun, money to spend, etc. I see a lot of the posts out there that i could never write, full with things i could never do with Yon, and feel even worse.
    God am I depressing or what? It was supposed to be a helpful comment. I wanted to say you are not alone in these feelings, or fears, or guilt.
    But you are also the one who gave me a place to stop and look at the positive, look at things I didn’t. So I thank you every single day for that. Even if not verbally 🙂 feel free to moan at my blog, and I’ll smile at yours 🙂

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