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Welcome to the Family

Welcome to the Family

Have you seen children with complex needs out and about? Witnessed a small person with autism having a meltdown in public?

Have you inwardly recoiled, wondering how anyone can cope with this kind of life?

It looks distressing and messy. Maybe you thought “they must be really special to do that, I couldn’t”

And now it’s you. The thing you feared, maybe quietly expected, has been confirmed by the medical profession.

How will you cope, how do they cope? What will you do?

I’ll try and help you out. I myself have an accidental specialism in Special Needs parenting.

Unfortunately nobody bothered to send me on a career development course for this one.

Personally I believed I was better suited to a more glamorous way of life.

Despite ongoing reservations I have found out that it is possible to have an ordinary family life in the middle of an extraordinary one.

It takes guts, physical strength, emotional resilience, a sense of humour. Oh, and a functioning washing machine.

This life can be extremely isolating. At times you may find yourself completely alone and unsupported.

Please bite the bullet and seek out new friends in the same club. You won’t like them all, but there are bound to be people in your tribe, whatever it may be.

Marvel at their strength and revel in their support.

I laugh with other SEND parents harder and longer than with anyone else, and frequently about things that really should not be funny.

Feeling overwhelmed is normal. Denial is one of my favourite coping mechanisms. Take each day as it comes and don’t fret (easily said) about the future.

If sticking your fingers in your ears and singing Disney songs helps, go for it (possibly not in public)

Your home will be filled with well meaning professionals. They will bombard you with appointments and information. You can pick and choose what to take on board.

This child is a member of your family, welcome good advice, but it’s still you who has to get up in the night and deal with sick/poo/seizures/feeds (delete as appropriate).

Believe me you will soon find out who you can rely on to go above and beyond the job description. Appreciate them, thank them; buy them chocolates at Christmas.

I won’t lie to you, newbie SEND parent; you are likely to experience depths of emotion that you never knew existed.

You will come up against children struggling to survive; some won’t make it. In one school year my then 6 year old lost three schoolmates.

You will see the bitter unfairness of life in all its imperfect glory.

It’s neither understandable, nor explainable.

I hope you find some comfort in remembering that those special parents you feared and revered had no training, no preparation no idea of what lay ahead.

They like you had different plans for the future.

Join the club.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jane Scott

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Mum of 3.Reluctant special needs specialist. Champion procrastinator. Need an opinion? Happy to oblige.

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