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

Advertisements

19 thoughts on “To The Parents Of The Disabled Child Who Doesn’t Look Disabled

  1. This is so so true. Thank you. A lot of people see the child then hear about the struggles at school/problems socialising and just say ‘low attainment’ or problem kid. I’ve experienced the push back from parents not understanding why my son sometimes gets ‘special treatment’. Again thank you for this post.

    Like

  2. Thank you for saying it. The amount of thought and planning it takes to have things ready in case they have sensory overload. Or need distracting so they don’t follow through on that train of thought.

    Liked by 1 person

  3. Thank you so much for this! I have just stood in the kitchen slumped to the floor crying because I so often have to put up with stupid and insensitive comments which make me feel like I am overprotected and at worse a bad parent.

    Like

  4. Ohh I could write every word thank you 🙏
    I was told I am holding him back that he looks as normal as any child next to him no one wants to understand even though he tried his very best not to have meltdown at church he is going to become different person as soon as he gets to the car but to every one else he looks normal.

    Liked by 1 person

  5. My son is 13, everything you wrote I can echo.
    He doesn’t look disabled but has significant disabilities. I still hold his hand to cross the road, help him on the stairs, support him with self care, help him socialise because he can’t do it himself to name few of a hundred other things
    People don’t know because they don’t see.

    Like

  6. This is soo true,sick of people judging others for the way they support their child.Give your child what they need, and don’t ever feel guilty for it.let others judge,they aren’t living the life you or your child are.

    Liked by 1 person

  7. I totally agree, I have 2 children now adults with autism. Sam 23 and Sophie 20, they are both still living at home. It’s been a long journey, still get the stares from people when out and about but that dosnt stop us. I’m so proud of them both xx

    Liked by 1 person

  8. My 6yr old daughter has global developmental delay, and she is often ignored by peers and parents, so naturally she cling to me but it’s not possessive, it’s protective, wish people would ask rather than judge

    Liked by 1 person

  9. I cried when I read this.

    I understand that the struggle is very real. I have felt the pain of knowing my own family doesn’t want to babysit my kids because they feel that I let them get their way all the time and they worry that I will flip out on them if they dare to discipline them for bad behavior.

    I know what it’s like to have a child who gets aggressive over the word no. Who surrounds himself with toys and uses this nest as his safe place.

    I know the fear that no one will want to care for them when you die. The importance of making a plan to protect them and provide for them even when you can’t do it anymore.

    I know what it’s like to feel despair, to think you cannot continue to do this.. and to keep doing it anyway.

    I know what it’s like when you are told there is no cure, but there is hope.

    I know what it’s like to cry for weeks, to research online until you fall asleep and find more questions than answers.

    I know because this is my life. My child. My future.

    And I know that you are not alone. Because I will fight with you if need be. I will hold your hand when you feel like the world is against you. I will be your support when you look around and no one gets it.

    Liked by 1 person

  10. It is doubly hard when it is your own mother (the children’s grandmother) who is making the comment … they are old enough to do X. You spoil them.

    Liked by 1 person

  11. I have a beautiful 10 year old son with Global delay. He is 5 foot 5 inches tall, has size 9 feet and looks “normal”. We have to ignore the strange looks when we use the disabled loo or even worse, i take him into the ladies with me!! people dont understand what they cant see. He loves to play with other children but i see the nervous looks my gentle giant receives from the parents of the 5 year olds he gravitates towards. I have learnt that most people are kind when they realise he is “different” but that is usually not until he talks to them or they see him play as he looks like a young adult at first glance

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s