Adapting life – a family’s story

One of our families has written a blog post about the many adaptations families with children who have disabilities have to make.

“Several years ago we were referred for an assessment by an OT to look at possible adaptations we might need to our house to make things more suitable for the girls needs then and in the future. We were in fairly uncertain times with no clear idea of which way things would go health wise, so it felt like we had to consider advice from any professional willing to offer it.

Following her assessment there were some fairly obvious things that were going to make a tangible difference once completed, like an easily accessible shower with a seat to rest weary legs. Level access to the property for wheelchair access and to prevent trips and falls when crossing the threshold. There were also some that came as a shock! Had we thought about how to get upstairs as things got worse? Would our stairs be suitable for a stairlift or if needed could we accommodate a through floor lift? These weren’t the conversations we ever thought we would be having.

As it happened she was a tad over zealous and the larger adaptations, thankfully, have never come to fruition……and breathe. But it certainly adapted our thought processes and our minds went on a journey of worry and stress that we hadn’t necessarily prepared for and actually weren’t needed.

But as I sit back and consider the past 11 years the adaptations we have had to make are many, but to the outsider many maybe frustratingly hidden leaving folk wondering what all the fuss is about!

Some of the things that have made a real difference to quality of life have been fairly unsophisticated like rubber bands round utensils and tubigrips on their arms to improve the messages sent back to the brain so eating and writing is more controlled. Getting seating and sleeping spaces right have prevented pain and spasms and enabled rest and ability to stay still! This might have been with bespoke specialist seating that come at an eyewsteringly high price or, with trial and error, the correct cushion or pillow shoved into various corners to prevent bumps or prop up legs!

We no longer have an old icecream tub to hold our household medications…we have a whole double cupboard dedicated to the bottles, tubes of creams, spacers, inhalers, dosset boxes and all other necessary medical paraphinalia that keep them well & sparkly!

We have walls decorated with visual resources painting a picture of how the days are (in theory) going to pan out. Not too detailed so minor changes can’t be coped with, but detailed enough to be the lynchpin for the day. Essential to help with the difficulties with transition and inherant need to control…ahhh! Visual prompts to accommodate one child with short term memory difficulties & the other struggling with executive functioning & concentration.

The lounge which in theory is our calm space is filled with peanut balls, exercise mats, and a human sized bowl for spinning and chilling in that provides just enough sensory feedback to keep our sensory bunny calm! Though doesn’t necessarily calm everyone else as they create an undesirable trip hazard in the thoroughfare!

Adaptations to meal times to accommodate the sensory culinary preferences (cottage cheese, chickpeas and anything burnt!) And a constant supply of crunchy snacks, chewing gum or chewy items to prevent any more bite marks in furniture or chewing of clothes due to the constant oral sensory seeking behaviour.

Normal planning doesn’t do for us! Logistical management takes on a new level considering fatigue, sensory overload, medications, splints, ear defender’s, weighted jackets, visuals and also how to practically manage 2 children in wheelchairs when their maybe only one adult!

Adapted bed time routines, that involve so much more than bath, teeth, pj’s story & bed.

Adapted life plan! Not just avoiding pomotions & working part time hours, but a whole different career, a whole different mindset. How do you get the flexible working that takes into account the days off school due to frequent sickness or school refusal, the micro management of meetings or appointments, tests & all the necessary paperwork, DLA, EHCP, carers assessments? Oh yes & the financial restrictions put on you when you receive carers allowance! You can have it if you care for someone more than 37 hours, but you can’t claim it twice for looking after 2 people & by the way you can only earn  £100 a week! If you have a career that you trained hard for actually getting a contract for so few hours is nigh on impossible! The solution I have fallen into is effectively being my own boss, working hard when I can so it doesn’t all fall apart when I can’t! Trouble is that level of juggle sometimes leads to me falling apart!

Emotional adaptations you have to make along the way can have massive impacts. Relationships are tested as you effectively tag team the caring role, no time to talk or process the latest appointment, diagnosis or meeting about school. The different timings in the processing of it all as one crashed & grieves the other has to up the ante! Friendships are tested and sometimes don’t survive, so a new support network formed. Extended family roles adapted as the expected role of grandparents is morphed into respite carers, and comes with it a whole set of logistical & emotional challenges.

But then there’s the positive adaptations that have taken place. The appreciation of the smaller details, celebration of the moments when unexpected milestones are achieved that otherwise may have been taken for granted! A different level of understanding your child inside & out! The involvement of family to achieve a special trip means they get to be part those intimate moments that they may not otherwise have been part of…Disneyland, trips to London.

The adaptation of our attitude on life! Live for today not for tomorrow, learning to dance in the rain & not waiting for the storm to pass, remembering it’s not what happens that’s important but what you do about it! But really learning that you can’t change the situation you haven’t chosen to be in, but you can change the way you think about it and embrace the necessary adaptations rather than fight against them!”.

You can read this, and other blog posts, here.

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