Dread of the Summer Holidays

Nadine Neckles by Nadine Neckles Additional Needs

Nadine Neckles

Nadine Neckles

I'm Nadine, Mummy to my gorgeous princess G, she is my biggest inspiration and blessing. She also happens to have Chromosome 18q- a rare condition...

Us parents...or me…Well I am ready to jump on top of your car and demand that you let me live with you for the next 6 weeks because my daughter struggles without routine!

Actually -- I struggle without routine!

Holidays bring with them the wonderful opportunity to spend more time together, but it also brings with it the unscrupulous pressure to keep your kid entertained - constantly.

G, my daughter is at that age where she wants to go out and play at the park or have play dates, or just spend the day playing (with me) ALL DAY.

However G struggles, she struggles to speak, struggles to walk short distances, needs help to get on and off all the equipment at the park.

She has an eye impairment that impacts her perception of depth and speed so she can’t spot simple dangers (like uneven flooring).

She has low tone so she gets floppy when she walks, so a trip to the park means I need to bring along our buggy wheelchair.

As I mentioned she doesn't speak clearly so she isn't understood by most children, so she spends the majority of her time in the park trying to engage with other children with varying degrees of success.

She tries her best to ‘run’ after them but she has coordination issues and so despite her best efforts she is often just ‘too slow’.

I spend the entire time trying to keep her out of harm’s way, from being knocked over by speeding children or flying swings.

Or keep her on more manageable activities where there is less of a risk she will fall off.

I play interpreter with children so they will engage with her and just hope their parents don't think I am a weird stranger!

She is also starting to recognise cold and dismissive reactions from children and so I am desperately trying to shield her away from this as I want her to remain friendly, social and excited.

Social outings are getting even more challenging to navigate.

It is exhausting.

Taking her on day trips in the holidays are equally challenging - Where can we go? Will they have adequate changing facilities?

As she is too big for baby change now and I refuse to change her on the floor.

What can she eat - she has a list of intolerances which leaves our choices very limited.

But what if it is busy…will she get overwhelmed? Will the buggy get in the way? How much is it? Can I get on the train…is there wheelchair access? The list goes on…

It is stressful thinking about it!

Each holiday I feel battered and beaten by the end of it.

The daily demands of constant stimulation and attention, navigating her emotional temperament and trying to keep on top of her therapies is a massive challenge.

Just thinking about the holidays makes me want a holiday!

A holiday. By myself. On a beach. With a glass of something tingly.

I digress… the holidays bring a myriad of challenges from social outings to logistical dilemmas.

All I can do is send this SOS out to other parents and say you are not alone!

WE WILL MAKE IT - she says with her warrior style scream, as she clutches her weapon of choice (wipes) and imagines herself charging up a metaphorical hill!


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