Monday, 10 February 2014

Us against the World....

So far today, there has been at least two occasions that I could of cried my little eyes out, squawked like a hungry baby, threw myself on the floor kicking and screaming like a toddler and slammed doors before screaming some random obscenity like a teenager!

I'm glad to report that I didn't actually do any of these things by the way :)

Please understand that I'm not a crying person, oh no, I'm very English that way.

I bottle all emotions up and keep a very stiff upper lip. Maybe that's a bit of a problem for me - I don't know.

Today was a meeting day, them type of days whereas you having a meeting after a meeting, throw in a appointment or two and that's the day gone.

This morning was DS's review, it was held at school with most of the relevant professionals there.

A member of staff brought up the fact that DS often arrives to school with a dummy and that it was a problem because it's not age appropriate.

DS does have a dummy and no its no ideal by any means but neither is the alternative.

He has a dummy to sleep and as a stand by for when we're in the car.

Although I'm aware of his age with a dummy, the alternative of removing altogether is not a attractive one :(

SLEEP - Sleep is important to us. If DS was to be without his dummy then he probably wouldn't fall asleep until the early hours of the morning. Prior to that he would be very distressed, screaming, having meltdowns, self harming, breaking things and attacking me all of which would last several hours.

TRAVELLING - DS isn't a great traveller in the car. He will often unclick his seat belt to attack me whilst I'm driving. He will kick my seat and pull my hair. I find if I let him have his dummy (only if he is starting to get anxious whilst travelling) then he is calm and we get from A to B safely (and alive!)

I was only recently discussing impacts of his dummy to both his dentist and speech therapist. The dentist said that we have some time yet to gradually remove it before it starts to affect his secondary teeth and that the fact that he tends to have it whilst sleeping and in the car isn't as big issue as it could be.

I do intend to remove it but it will have to be a very gradual and thought out process. I suppose the reason why today was a bit upsetting that coming from a special school I would of expected staff to be a bit more understanding about this, its not like he has it during the school day and it wounded me a bit for them to presume that I hadn't thought of it and had a plan to remove it :(

The next meeting of the day was with a disabilities holiday club team. They are part of social care and what they do and how they do it sounds great.

I talked about DS, about his likes and his challenges. His challenges seem to go on forever a bit and I sounded like I was trying to talk them out of having him but I wanted to very honest about his needs.

It didn't matter as both of them didn't flinch and as they have both worked with children with disabilities for a very long time, there wasn't anything that they hadn't come across before.

I suppose what upset here is I realised just how severe DS is. I mean I've always known it but its like today it hit me, really hit me.

I started to think  of the dummy conversation I had with the school staff member earlier in the day as well as DS difficulties that I seemed to be continuously listing now.

I felt like grabbing DS and running off somewhere so we can't 'offend' anyone else with his behaviour or 'dummy'.

I would homeschool him and it would just be me and him.

Sometimes I feel like the only person in the world with a child with autism. It was exactly this reason why I started this blog because if there are other parents out there that feel like me then reading this blog will make them see that no they are not the only one to sometimes feel deflated.

Me and him against the world has never felt more true .....

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