A story of unconditional love and sisterhood

  
Originally posted on Bella The BravePCDH19. Thank you Helen for letting us share a glimpse into your life. Please check out her Facebook page.
https://www.facebook.com/pages/Bella-The-BravePCDH19-epilepsy/1602930993263473

My child is not special

 …..or is she?
I am the proud mother of two beautiful girls.

 Both have a button nose, both have piercing blue eyes. Amazing eyes so deep that you could lose yourself in them for what feels like forever. Just like gazing up at the stars in the nights sky these eyes are magnificent and full of wonder. At a glance just like the distant stars they seem to look the same but if you look close enough you will see they have both traveled a very different path to get them to where they are today. These eyes have their own unique story. Not one more grand then the other. 

 Both different not less.

 Both of my girls have cherry red lips and both are strong willed with a little pinch of stubborn thrown in for good measure. They love unconditionally and both fight hard. I call them spirited.

 You could say one of my girls has additional needs although I may argue they both do. 

 They are both beautiful,unique and fierce.
Yet time and again Bella is considered special or to have special needs. Why? Why should she be given this title and not her sister? Is it because Bella has a list of things she can’t do, of milestones unmet? Is it because of a list of disabilities that fit under the umbrella term of special needs that she has and her sister does not? 

 I mean her sister is only a neuro typical child right? Wrong her sister is amazing too. 

 Often in public Bella’s big sister is ignored or over looked by others even when she is standing right next to Bella.
I love both my girls equally and I’m sure most parents who have more than one child feel the same. I do NOT favour one over the other. I tell my girls daily just how much they are loved. One does not yet understand this concept and I often receive a smile or an eye roll followed by ‘I know mum’ from the other one.
So imagine how it feels from the point of view of a sibling when we are out and she is over looked whilst her sister is constantly called special. Bella is not special.

 She is no more special then her sister. In my eyes they are either both special or not at all. 
I am NOT offended by the term special needs. It is an umbrella term for all kinds of disability. 

 I personally use the term additional needs as special needs is commonly defined by what your child can’t do so still points out your child is different where as most of us have some kind of additional needs that are unique to us. Some may be disabilities and some may not. 

 I have on rare occasion told people Bella goes to a special school because they do not understand what an SSP school is but more often than not it is followed by me saying additional needs. They seem to be offended or confused when I say she goes to a school for children with severe intellectual disabilities. So in that moment it’s easier to say special when I haven’t got the time or energy to keep explaining.
When people aren’t ignoring Shannon they are constantly telling her Bella is special.

 How do you think that makes her feel? Even when she says nothing I know from a mothers point of view it’s not good for her self esteem to feel she’s not special, not important that maybe her sister is favoured by others. 

 On the flip side of this Shannon is all so often upset by the fact people can be so disrespectful of her sister by pointing out her challenges then running the other way or simply avoiding both of my girls like the plague. They both deserve friendship love and respect just like everyone else.
So why is Bella given the title of special or special needs by others when I have not given it to her?

 Is it because Bella is brave and beautiful? Is she special because she has incredibly long legs and can run so fast she could probably give Usain Bolt a run for his money? Is it because when Bella is not pulling silly faces she has the definition of beauty which vain people look upon by the near perfect symmetry in her features?

 Is she special because of her amazing smile that will light up a room even through the darkest of hours?

 Did you know her sisters smile can do the same?
To those who insist on calling my child special needs in front of her sister please don’t. Did you know special can all so mean beloved or favoured? I don’t ever want Shannon to feel Bella is favoured over her. Not ever. The general public don’t ever tell my Shannon she is special like they do Bella but the fact is her needs are just as important as Bella’s if not more at times.
There is nothing special about watching your child be pumped full of drugs and oxygen whilst seizing continuously on a hospital bed to the point where her brain is slowed right down to try and stop the seizure causing permeant damage. She is unconscious and full of drugs yet she is still seizing. 

 If you think Bella has special needs in that moment then so does her sister. The frightened child in the corner of the room watching on. Not for the first time but the third time this month alone. The very same sister who will be ignored or given a quick pat in the back as the medical team leave the room. The same sister who is left to process what just unfolded in front of her eyes yet again.

 Doesn’t she now have special needs? Doesn’t she now deserve extra support? Yet no one will come to her aid or acknowledge this but me. The general public won’t tell her she’s special or try to understand. 
And what of the very same sister who hugged Bella earlier in the night but was now rudely awaken by a screaming raging child at 1am in the morning. The same little sister she hugged now attacking her. Waking her up with a scratch to her eye and a bite to the face. The same big sister now sitting dazed and confused crying at the edge of her bed. Are her needs not special or somewhat greater than Bella’s now? Yet no one will tell her she is special even though it’s the right thing to do. No one will understand only me. Only I as her mother will comfort her from her sisters unexpected meltdown.
There is nothing special about watching your child with additional needs smacking her head off anything she can. Showing up in emergency department at silly o’clock in the morning with your ASD child still raging on hours later and coming to the conclusion even though you were against it she needs to be medicated. 
So now you may understand why I choose to use the term additional needs instead of special needs. 

 Both of my girls are amazing and both have their own additional needs unique to them the only difference is one has a list of formal diagnoses as long as your arm and other doesn’t. 

 Their needs may be different but equally as high.

 Not one labeled above the other.

 My girls aren’t special

 …..or are they?

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