To The Parents Of The Disabled Child Who Doesn’t Look Disabled

Dear fellow parent,

I understand.

I understand what it’s like to be in the park and others wonder why you are sticking so close to your child, perhaps guiding them or supporting them to do what other children much younger are doing easily. I know what it’s like to see parents and children stare at your child, laugh at them or worse…walk away from them.

People would understand if your child looked different, if you were pushing them in a wheelchair or if they had a walking frame. I see your child’s disability even when they don’t look disabled.

I understand.

I have a child just like that too.

It’s the expectations isn’t it. They look fine so why are they not talking like others expect, acting age appropriate or joining in with others? The assumption that ‘looking fine’ means they are ‘fine’ and that we are the issue not the child. Oh do I understand that!

Our parenting is questioned just because our child doesn’t ‘look disabled ’ whatever ‘looking disabled’ is even meant to mean? People think we are over protective, over bearing and causing the problem. Yet they don’t know what we know. They don’t see what we see.

They can’t see autism so they don’t know it’s there.

They can’t see global delay or learning difficulties so they must not exist.

They were not there when you received the genetic diagnosis so they don’t know.

They haven’t experienced the epileptic seizures so therefore you must have made them up.

They don’t know anything about the myriad of specialists you have visited or the volume of appointments your diary is full of.

They see your child and make assumptions based on the fact they look ‘normal.’

I understand.

You dare not mention that your child receives disability money. You know from experience that you will be accused of using your child to get money.

Why? Just because your child doesn’t ‘look disabled’ so therefore according to society they can’t be disabled.

I understand.

You see I have a child like that too. I get the sideways looks when I hold my almost ten year old tight as we walk. I hear the sniggers as he flaps and makes baby noises as we walk down the supermarket aisle. I know the judgement at the school gate when my child is the different one yet he looks just like any other child.

For some reason disability is meant to be noticeable or else it must not exist. People have this strange notion that if something can’t be seen then it must not be believed.

I know how that makes you feel because I feel it too.

We should not need to justify our child disability just because they don’t look disabled as people expect. It shouldn’t matter what someone looks like and people are so quick to judge.

So know you are not alone.

Know that I understand.

I am right there with you.

You do what you need to do for your child and know I support you.

Together we can raise our beautiful disabled children who don’t look disabled and hopefully one day others will understand too.

Yours lovingly,

A mum of a stunning but very disabled little boy.

This blog originally appeared here

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The most beautiful girl in the world

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Have you ever had a stranger do something so incredibly awesome it just makes you want to cry? I have. And it happened just this week. I pray the kindness and power of what the stranger did for me and my 4-year-old daughter impacts you the way it has impacted me. Some people make a mark on others lives that can never ever be erased.

We had went out as a family to a local place to eat. Everyday events like this have their challenges for every family but more so for mine due to the complexity of my sons needs and the fact we need to balance his needs with that of Naomi’s and somehow all need to get some chance of eating at least part of our meal. We could have chosen anywhere to eat but that night we opted for the local carvery. No waiting to get orders taken, the kids can see what they want on their plates and we can attempt to eat together without the usual demands for nuggets and fries.

Naomi is a challenge to feed in such places as her diet is so restricted and no-one wants a battle or tantrums in public. But a little mashed potato, a few selected vegetables and a little gravy got her picking at her dinner while quietly colouring in. Isaac had his usual loaded plate and was firing handfuls of food into his mouth like a child who had never seen a dinner before. I promise you they are twins but you would never believe it to see them eat!

However, even with food, Isaac’s attention span can only last a limited time and he was soon clambering over dad with food all over his face and fingers, wanting off to run around. A knowing look and wink of the eye was my signal that I was willing to take the strain tonight. To Isaac’s flapping, smiling delight he was getting mum. He brought a smile to my face even though I was missing out on a hot and delicious dinner yet again. But then I glanced at Naomi and my heart sank. Eyes bunched up with tears ready to explode at any minute, and a tender voice so timidly saying through her beautiful blue eyes ‘I want you to stay mummy’. Oh. This isn’t fair. They both need me so differently. And whatever I do one of them is about to protest publicly. I really must get that cardboard cut out of myself done. It’s the only way I can think of being in two places at once. And tonight I so want to be with both my babies.

I chose Isaac but prayed my daughter would know she wasn’t being rejected. I kissed her cheek quickly as Isaac vanished out of sight. ‘Come find mummy baby when you have finished your dinner.’ Oh Lord, this little girl is going through so much. She shouldn’t have to live like this. No wonder she has such tangible confidence issues and low self-esteem. No wonder she never wants to let mummy out of her sight. It must feel to her like she is second best, her wants and needs don’t matter, mummy prefers her brother. None of this is true but how do you balance the high needs of one child physically and communicationally with the high needs of the other socially and emotionally? Who is going to help the siblings of children with high needs? How can I let her know she is beautiful, clever, wanted and loved when my actions tell her I am walking away to see to the needs of her brother? Dad reassured her and encouraged her but it just wasn’t enough.

So my eyes were on my son but my heart was with my daughter. And God was about to use a stranger to impart a truth into her little life that would go deep into her inmost being.

As Isaac ran up and down in a little garden outside a group of strangers watched on as they drank and ate and talked. You could hardly ignore Isaac’s wild flapping, whooping noises and funny walk. But one young couple were watching him with smiling faces and pleasant eyes. And then little Naomi appeared and held my hand in the warm sunshine as we stood side by side watching her energetic brother. The smiling strangers asked if it was her brother to which she smiled and nodded. They invited us closer and handed her two coins, one for her and one for her brother. So very very kind of them. And without prompting Naomi said thank you.

We exchanged a brief conversation that her brother had special needs and that the children were twins. The lady reached into her handbag and fished for something. I hoped it wasn’t more money. She found what she was searching for and beckoned Naomi nearer. Looking my precious daughter in the eye she spoke lovingly and tenderly to her as she asked her a question.

“Would you like to see a picture of the most beautiful girl in the world?”

A whispered “yes”

To which the stranger opened a little love heart make up mirror and showed Naomi her reflection. To see my daughter smile and touch her reflection as she realised this stranger was talking about her was incredibly touching.

“You are so beautiful. Inside and out”
“Every time you look inside here remember you are special”

The words of a stranger. But exactly the words of God as well. Not to mention the exact words she needed to hear that day.

The lady gave her the mirror to keep and Naomi has barely let it go since.

I thanked the lady and her partner for the coins, the gift and the joy they had brought to my heart. But how do you truly thank a stranger for saying exactly what your 4-year-old needed to hear? I thank God once again for putting people across our path in exactly the right timing. And I thank God that the next time we go out it is mummy who will be staying with Naomi too.

I believe we all need to hear this message too. We can all feel left out at times, or second best or not loved. And every one of us needs to know that we are beautiful inside and out. We are special. And Naomi now loves to tell me “Mummy I am the most beautiful girl in the world”. Yes, baby girl, you are indeed.

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