To label or not to label?

I think this is a very personal opinion and your view will completely dependent on the journey you have taken.

However, for me, I was incredibly grateful for that label, even though, at the time, it truly broke me.

Deep down, I knew from the moment Aiden was born that there was something different about him.

As he grew that difference became more apparent and it felt like I spent my life making excuses for him.

‘Sorry, He’s just tired’

‘Sorry, I don’t think he heard you’

‘Sorry, he doesn’t understand’

These excuses changed after my acceptance, to:

‘That’s just Aiden!’

‘In Aidens world it works like this…’

‘Aiden just has his own set of rules’

The hardest part was trying to justify everything he did or we did because of his behaviours.

Really what I was trying to do, was gain acceptance from others.

Without a diagnosis we had no answers or reasons for his or our behaviour towards him and more importantly, we had no guidance as to whether what we were doing was right.

His label of Autism felt like a massive relief! A relief that I wasn’t going mad, a relief that there was a reason to his extremely difficult behaviour, a relief that there was a reason for his differences. It was also a relief to know that I could now learn to understand him and that ultimately, I could learn how to help him.

However, with relief also came an abundance of guilt and grief. (Which has never gone!)

Guilt – what did I do to cause this? Also, guilt about how I’ve dealt with his behaviours up till that point – maybe if I had responded differently, I wouldn’t have caused him so much distress.

And grief! Well this is complex, because nobody has died. However, the feeling you get after retaliation sets in, that your child and your relationship with your child is never going to be the one you had planned and it is said to be the same feeling as grief!

These feelings then create a cycle which leads back round to guilt again! You feel guilty for feeling like that! ‘I just wanted a ‘normal’ child!’ You envy others with their ‘perfect’ children – because they have the life you had planned! That doesn’t mean you don’t love your child (on the contrary, I think I love him even more!) but you grief for that something that you never had and will never get and feel guilty for even thinking it!

But without that label I think I would have gone mad. I would not have known where to start with helping to support his needs because according to society he didn’t have needs and I would not of been able to grow in my ability to understand him.

It is easy to be caught up in the negativity that surrounds a so called ‘naughty’ child and it is easy to forget how this negativity affects not only their, but your self-esteem.

Professionals say you don’t need a label to access support! That is utter nonsense! Without that label Aiden was a ‘naughty’ school boy struggling to fit in to a mainstream school. I was a bad parent and I was ousted by other parents within my community.

With that label Aiden became a complex little boy who needed specialist provision. He was given access to therapies and social support to enable him to fulfil his life ambitions and to achieve an education and future he deserves. Other people had a name for his behaviour (I won’t say they understood) but with that label their was a degree of acceptance because there was a reason for his behaviour.

Excluded at 1 year old

With the new school term starting and the world posting their precious back to schools photos, which for many parents of children with special educational needs and disability (SEND) is sheer torture, I thought it would be a good time to blog about my first experience with an educational provision as one of those parents.

Aiden is now 18 and his school years finally over, but looking back, by the age of 1 year, he had well and truly frazzled my brain! He was definitely unique, we’d tried every strategy available, just to get through the day with less screaming! I’d had enough, and decided I needed a break, he was going to nursery! As a qualified nursery nurse, who wanted nothing more than to have children and look after them, I really struggled to come to this decision. I then had to find a nursery I was happy with to do my job, but I knew for my own sanity, it was the right thing to do. I found one and enrolled him in for 2 days a week!

Peace at Last!

I could now walk over the threshold of Asda without a screaming child in tow! I could go for a wee on my own, knowing he hadn’t held his breath at the thought of me leaving the room and passed out on the floor somewhere with his head cracked open. I could talk to someone else without him pulling my face away or pulling my hair. Omg, I felt guilty as hell but I loved it! Well, that was the first few weeks…

Then the nursery came to me and said, ‘he’s not really settling like the others all have! He has huge separation anxiety issues and cry’s pretty much all day? We think you should reduce he days!’

My response was, ‘well, he cry’s all day at home, the only difference is, you get paid to listen to him and I don’t so please keep him.’ They gave him a few extra weeks to settle for good measure but I knew then that they were done with him!

‘Sorry, they said, a few weeks later, it’s just not working, bring him back when he’s a bit older!’

And that was it, back on my own and my first educational setting was done!

EXCLUDED at 1 year old!

I should have learnt then that school wasn’t for him but that’s another story.

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