Is your other kid normal?

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‘Is your other kid normal?’

How would you feel if someone asked you that?

Before I let you know how I reacted to that I want to start by looking at the dictionary definition of ‘normal’.

According to The Oxford English Dictionary the word ‘normal’ means: conforming to a standard; usual, typical, or expected.

In other words this stranger was implying my son is not standard, or usual, or what was expected. He does not fit societies stereotypical idea of a seven year old. He is different. He is unique. To the stranger he stood out as exceptional and out of the ordinary.

Do you know how proud that makes me of my son?

I love that he is different. I love that he does things in his own way, at his own time and he has no concept of following the crowd. I delight in the ways he shows excitement by flapping, making high pitched noises and spinning. I smile when I watch him making his own delicacies like pizza with custard and yoghurt with mashed potato. I find it refreshing how he would rather watch lift doors than spend money on toys. I dance around with him in glee at watching yet another person use the hand dryers in the public bathrooms.

He is funny. He is loveable. He is energetic. He gets bored clothes shopping and thinks he knows better than me at times. Those are all ‘normal’ things that seven year old boys do!

He has brown hair, Hazel eyes and a love of technology. He is average height and weight for his age and even his shoe size is right on target!

So why would a stranger ask me if my other kid was normal?

She looked at my sons disability. She looked at the fact he is unable to speak. She looked at his poor balance, his different mannerisms and noises and she saw him as less, not conforming and not typical. Her question implied I should be sad for having such a unique child and craving a child without any such challenges. Maybe I should be sad I have to see to his every need at seven? Maybe I should be broken hearted he is not yet potty trained and not speaking?

I refuse to judge this stranger. Why? Well a part of me used to be there. My heart ached for the things my son could not do. My body ached pushing him around in a chair for all the years he could not walk. My ears would love to hear his voice.

Now I see my son differently. I see him as beautiful. I see him as wonderful.

He IS normal. His sister is normal too.

Normal according to the dictionary is conforming to a standard. If you see the standard as being human then there really is no such thing as not being normal.

So do you want to know how I replied?

I simply smiled and said softly ‘Yes. I am blessed with two amazing children. Thanks!’

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When the invisible disability becomes visible

imageSomething has changed quite recently. Something simple, yet from societies point of view, something quite life changing.

It isn’t my son. His needs and difficulties are exactly the same as what they were yesterday. He still can’t speak and has limited communication. He still has global developmental delay and learning difficulties. He is still doubly incontinent and vision impaired. He very much still has autism. His genetic condition (neurofibromatosis type 1) hasn’t miraculously disappeared. He needs full support to meet his every need. But something quite fundamental has changed for him.

For the first time his invisible disabilities have become visible.

He has always flapped in public. And screamed. Those just generated stares and cheeky remarks.

He has always made strange noises and avoided eye contact. They have just made people look the other way and pretend they don’t notice him.

We have used disabled toilets now for some time. I think some people think I am someone very special because I pull a key out my pocket to open the locked doors.

We park in disabled parking spaces and display a ‘blue badge’. But still we get questioned and accused because we lifted a child out the car who then proceeded to walk to where we were going. Why does society only think you are disabled if you physically can’t walk?

We have endured awful comments, hurtful stares and had many people avoid us when our son has been in obvious distress over sensory overload or frustration due to communication difficulties.

We have had to live with the fact our son did not ‘look’ disabled so according to most people that meant he couldn’t be disabled. It was frustrating, distressing and hurtful.

But now that has all of a sudden changed. His invisible disability is now blatantly obvious. And the difference in the public attitude is incredible.

We have just been given a wheelchair for Isaac.

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So suddenly people are smiling at his flapping, they find his noises endearing and cute, they even open the door to the disabled toilets to help me in. They no longer have issue with me parking in a disabled bay because they see a wheelchair coming out of the back of the car and a child lifted into it. Strangers are coming up and talking to us like we are no longer contagious. When my son screams, rocks and bites himself people are wanting to help and asking what they can do to assist instead or avoiding, talking about us behind our backs, or staring at us in disgust.

When we take him to appointments now people are going out of their way to help and support. Even medical professionals seem to take thing a little more seriously. People are listening, respecting and supporting where before these were all major challenges.

All we did was sit him in a chair with wheels. But it shifted things.

They told me having a wheelchair would be life changing. I certainly would agree with that. A simple chair with wheels and handles has made life more pleasant, more manageable, and much safer. I was expecting it would be major for us.I just never realised how major it would be to everyone else.

When the invisible disability suddenly becomes visible we change how we behave. I viewed my son as disabled but now because of a simple wheelchair others see him as disabled too. The thing is he is just the same Isaac he was before. The only thing that changed was a set of wheels.

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“I’m sorry, he has special needs”

I found myself saying this to someone earlier today. I hate having to apologise or explain my child’s behaviour to strangers but sometimes he is so ‘out there’ that I have to say something.

On this occasion we were visiting a local supermarket restaurant and Isaac had wandered off (he won’t sit for long) so I had gone in search of him. To drag him back or even try to persuade him to come back and sit with us would result in a massive screaming match so I try to watch him and pick him up only when necessary. He would never cause willful damage and just needs to explore and move around as part of his disability. But today he was in full ‘autism’ mode and very excited. He was walking, flapping and being very vocal and became very excited when he saw two ladies eating something he liked the look of. They also happened to be sitting on a window seat which makes him even more excited (not sure why but it does). So I watched my 4 year old boy, who to everyone looks perfectly normal, walk up to this table flapping his arms and making noises and heading straight to their table. He then stopped, looked at their table from strange angles and clapped his hands like he was cheering them on. Had he moved on I could have coped with this strange behaviour and said a silent prayer that the ladies would not try talking to him and carry on like nothing had happened. But Isaac turned around and walked to the centre of the restaurant before immediately turning right back and repeating every action he had just done all over again to the same ladies at the same table. Oh dear. One of those moments you just know is going to end in tears.

I was still reluctant to intrude on my son and hoped his short attention span and sensory processing problems might lead him on to somewhere else quickly. But something about these ladies, something about their food or the seats they had chosen to sit in where clearly interesting to Isaac. He was off again. The ladies tried to ignore him but I defy anyone to ignore a strange child who comes to you when you are eating, flapping his arms like a bird, looking at you through strange angles and tilting his head to the side and then stops right at you and claps his hands wildly making strange noises like a seal.

So I went and explained. “I’m sorry, he has special needs”. Well I guess that was pretty obvious by now! I picked my son up, kicking and screaming and took him out. I never did get to finish my lunch. And I really don’t know what they thought of my kids behaviour.

I don’t like apologising for my children’s behaviour. But I have to. There are so many social ‘norms’ and rules that people expect both from other adults and children. They say people with autism don’t understand social rules. My child does not even know social rules exist! He looks normal (discounting the strange way he looks at things, the strange noises he makes and the flapping and clapping) so it is expected he will behave ‘normal’. He isn’t in a wheelchair or walking with the aid of a walking frame. He doesn’t wear hearing aids or even glasses but he still has a disability.

And I want him to have a life. I want to take him places and let him explore. I know there will be times like today when he is too ‘out there’ and draws attention to himself. I know plenty of people will have seen him today and passed judgement. On both Isaac and myself. I know some people will feel I allowed him to go too far today. It is a difficult balance. The balance of allowing him to be himself, accounting for his developmental age and disability and that of acceptable social norms and rules and preventing him from ‘disturbing’ others. I walk a fine line every time I take him out. But I will continue to take him out.

Every day I take him out I am going to have to say to someone “I’m sorry, he has special needs”. Some days I will be saying it with pride. He is my boy, even if I have to apologise that he has done something you don’t understand or that has upset you, I am proud he has made it into the shop in the first place. I am proud he is walking. I am proud he didn’t help himself to your dinner! Some days I will be saying it with sadness that society still isn’t used to seeing enough ‘different’ people to understand and tolerate disability in all it’s forms. Some times I will say it in embarrassment as his behaviour crosses the boundary of ‘acceptable’ (oh there are too many ladies bums and boobs he has now touched as we pass in the trolley) But other times I will be saying it to educate.

I guess today I said it for all of those reasons. Maybe I should just wear a t-shirt saying “I’m sorry, he has special needs” but then again maybe, just maybe, a combination of more education, tolerance and understanding plus perhaps my child slowly learning what is ‘acceptable’ would mean one day soon I will be able to take Isaac out in public without having to say “I’m sorry, he has special needs.”Image