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The Guernica life of special needs parents

Updated: Apr 12

I can't represent all special needs families, but certainly I can share how this journey feels to me.


This is how I feel the majority of times.


Anne Hathaway in Les Miserables
How a special needs life feels like

This is how I try to advocate every day for my child.


Archangel Michael defeats Satan, by Guido Reni
How I advocate for my child

And this is how I'm often perceived.


Cruellia De Vil, Walt Disney
Perception of special needs mom

You see, when we deal with someone, whether a specialist or a therapist, and address with them a specific problem, this is what they see.


Portion of the Guernica painting
Small fraction of our Guernica life

I get it: that lady looks a lot like me.


What, sometimes, they don’t realise is that we are not just dealing with them: we deal with different hospital departments and specialties; we do regular therapies outside the hospital to give a better life to our child; we deal with normal baby stuff too, you know (like the joys of teething, viruses, potty training and so on); we deal with so much stigma, still; we also have to listen to those who constantly complain about their privileged life; we have to deal with these things while working on the couple (if we have a partner), because this journey is definitely a big challenge for the couple too, not to mention the traumas that this whole experience gives us, and how too many times we have to say goodbye to our own dreams and projects.

Because, you know, none of us were looking forward for a career as a special needs parent. We had our own jobs, expertise, professional goals and many times we don’t have the chance to get back to any of that.


Like every other parent, we wished for a La Grande Jatte kind of life.


A Sunday on La Grande Jatte life
A Sunday on La Grande Jatte, Georges Seurat

But we got a Guernica life.


Guernica life
Guernica, Pablo Picasso

A life of medications, doctors appointments, therapies, exhausting online research on illnesses and medical conditions we often had never even heard of before.

A life where, if others didn’t exclude us already from their lives because we certainly have a big luggage with us, we end up isolating ourselves many times anyway.

Because we’re concerned about our kids immune system, because our kids can’t cope well with all that “noise”, because we are tired of seeing that sometimes our kids are seen for their disability and not for who they are.


"Ok, that’s depressing!"

I know.

If you think that this is depressing, imagine how we feel: you can always skip this post and go back to your reality.

We are stuck with our Guernica life.

There’s no scrolling for us!


"So what can be done?"

I’m so glad you asked!


In my opinion, there’s so much that can be done, and it all comes down to the concept of: creating a village.


It all starts with the medical team: doctors, nurses, hospital management and everything in between.


Step 1: most likely the parents in front of you don’t have a medical background; this doesn’t mean that we’re stupid, it doesn’t mean that we don’t trust you, but it also doesn’t mean that we can’t understand what you say.

Take the time to explain to us what is happening, show us pictures of the organs and tell us “it should be like this, but it’s like that...”, or “we have to do this test, because we are trying to exclude this, and once we do it means that…”.

Words, people! Communicate with us because any parent who has a child in a hospital is worried; if it’s a special needs parent, chances are that we are extra worried, extra busy, extra exhausted.


Step 2: who tells you that the one medical issue you are solving is the only issue we have?

Start assuming that there’s so much more to the picture, because there is! Remember, we are dealing with a Guernica life.


Step 3: Your duty of care goes way beyond the simple “keeping the child alive”. If I had a penny for every time a doctor told me “look, your child is stable!”.

Ah-a.

It is your responsibility to ease the child’s clinical journey and general well-being. If this means that you should stop and help the parents navigate the health care system in order to help the child thrive in the immediate present and in the future development, well again, that’s your responsibility.


Then, special needs parents, as guilty, ashamed, afraid, confused you might feel, don’t.

Ask for help, explicitly.

Talk about your journey, because it’s not only valid: it’s important.

We are part of the picture exactly like other families, exactly like any other minority.

The more we treat disabilities and the role of carers with dignity, relevance and authenticity, the more the rest of the society will accompany us in our journey.

This world is so loud: if they don’t know you exist, they will NEVER acknowledge you.

So make sure you are loud enough to be heard.


Lastly, to all the others: remember our Guernica life.

Instead of commenting and trying to add your perspective to the conversation, try to listen and ask us questions.

Instead of feeling sad for us, try to be grateful for what you have. We don’t need your pity, we need you to understand how lucky you are.

And instead of just saying “Let me know if I can help”, be proactive and actually find a way to help.


There are so many ways we can be a village together!

You cannot change our Guernica life, but you might be just what we need to add a bit more of colour to our picture.


Stay safe.

Ciao!


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