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Post Diagnosis: Who looks after special needs parents?

Post Diagnosis: Who looks after special needs parents?

They have clubs and tea dates to arrange and a myriad of other things to contend with during term time.

There is barely time for their feet to touch the floor, let alone get to bed before 11pm most nights.

When raising a child with an additional need or complex disability this often involves a very different type of stress.

It can mean seemingly endless appointments, preparing and evidencing paperwork for school placement, battling for equipment, sleep deprivation and a whole new ‘normal’ to contend with.

Often the cost of coming to terms with your new normal takes time and impacts on friendships, relationships and home-life.

A whole life adjustment has to take place and can create problems whilst this adjustment happens.

For some it is like a grieving process, for others they experience a depression or anxiety

Some parents don’t ever manage to accept their child is disabled and relationships do break down.

Some parents blame themselves and find it very difficult to lift themselves out of the feelings they are experiencing.

Some cope relatively well and muddle through.

There is no ‘normal’ way to adjust to how life will be from now on.

The most important thing to remember is that you are still the same family today as you were yesterday!

The poem by Emily Perl Kingsly ‘Welcome to Holland’ describes receiving the diagnosis of a child with a disability being akin to the expectation of travelling to Italy but landing in Holland.

The thought process and adaptation of landing in Holland can be a shock initially but actually it’s not such a bad place after all, just different and requires a huge learning curve.

Feeling alone is tough especially at a time when support is crucial.

Remember to seek out support, join support groups whether face to face or online.

It is often said that people feel abandoned when their child is diagnosed or recognised as having a disability and this is often true – often the professionals have little knowledge of what is ‘out there’ to provide support and other parents become a rich source of information.

Use them and their knowledge and give yourself a helping hand!

Firefly Blog

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

Angela Kelly

Meet Our Blogger

I am an occasional personal blogger and write under Wristbands and Roadsigns. I also write for Special Needs Jungle. I have a private practice Emotions counselling. I am a registered member of the BACP. I also have a diploma in child and adolescent counselling (distinction). I work for PAST with children, adolescents adults including parents to provide a counselling/listening service and we work together holistically to work through and challenge difficult feelings and/or situations.

View Angela’s Profile

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