X, Y & Z: A to Z of Family Rights and Family Lives

We have got there, eventually!  The final instalment of our A to Z of Family Rights and Family Lives

We are cheating slightly on the X’s – but, we hope you will forgive us for this!

X is for X-rated – we rate what we really think of the incompetent jobsworth people that we come across now plus the systematic failures that ruin lives. We also rate those that make a difference to us, who don’t judge us and who go that little bit extra to support us on our journey.

X is for Xceeding our Xpectations – we get told off for having too high expectations and then we feel guilty if our expectations are too low. Many of us are striving for a better life for our children and young people whilst challenging the systems and services – and we hear time after time that we have aim to high and are not realistic. Yet, we would not be doing what we do, and supporting our young people in the way that we do because of our aspirations and hopes for them.

X is for Xhaustion – hoping you don’t feel like this by the end of the school holidays. Pace yourself for the next 5 weeks and treat it as a marathon!   Here is hoping you get enough of the good times and sunny days out that that the holidays don’t feel too arduous and a constant uphill struggle.

X is for Xceptional – that is all you wonderful people out there doing an awesome job of bringing up your amazing children and families. Xceptional families who are working towards a world with words like inclusion, love, family, care and compassion, achievements, rights, justice and equality.

X is for Xtraordinary – our lives definitely aren’t normal! Definitely, they are not every day or ordinary lives.   They are filled with ups and downs, swings and roundabouts, rollercoasters, and all the fun of the fair!

X is for Xpertise – we develop a vast range of skills from being a physiotherapist to a full time nurse; or a taxi driver to a therapist, a fashion designer to a communication aid programmer, an educator to a mentor, or a counsellor to a mediator, an interior designer to a cook and bottlewasher! We fix wheelchairs and give out medication, we deliver bespoke training to Personal Assistants, Teaching Assistants and those that come into contact with our children without realising it.

X is for X-ray –hoping your kids and you keep out of trouble this summer and don’t end up with suspected fractures or broken bones. We don’t want to hear of visits to join the queue down at Accident and Emergency! So for this summer, we would like you all to be healthy and happy!

Y is for YOU – without you where would the rest of the family be? YOU are the most important person. If you go down you will end up taking everyone else down with you. Why is it that on a plane they tell the parents to put the mask on first? It is not because they are the better ones, but it is because if the parent doesn’t look after him/herself first then there will be no one around to look after the rest of the family. So, please do not feel guilty/bad about looking after No 1. Who was no 1 again? Oh, it’s you!

Y is for Yell – who doesn’t yell? Can you honestly say you never yell? I think most of us admit to yelling – umm, well how many times a day? Once or twice a day or once or twice a week?   Do you describe it as just raising your voice? Yell and shriek as sometimes you just need to get it off your chest and say what you think – as long as it is private and not out in public. And as long as does not last long, hurt anyone, make someone sad, and you don’t get a sore throat from it then the odd yell may be just what you need. Try it in a field or in the woods away from the public and it can be quite therapeutic!   One parent says “do it at the wall and then get your arguments in order”!

Y is for Yoga. Better than yelling! Yoga calms the body and relaxes the soul. It is something that many of would love to do but tell ourselves we don’t have the time.   Some deep breathing and stretching the body can only do us good.   Laughter Yoga when we know we need a chuckle.

Y is for Yin and Yang. Finding a balance is so hard in our lives. In the summer holidays days out and holidays are great for our soul but often in the back of our mind we are thinking about coming home to filling in the assessment form, or that we have to book the appointment with the consultant, or we need to arrange a dentist appointment for the kids, or buy new school uniform before the end of August, or worry about our child going into a new class or a new school, or we come home to dozens of emails and feel just as stressed than before we left the house. The time we have had away rejuvenates our batteries (if it’s all gone without a hitch!) and gives us the balance we need to take on our daily life with all the extras we have to deal with.

Y is for Yes. We wish we heard it more often and that we could be allowed to do more of what we know is the right thing for our kids. Like “yes, spend your direct payments in the way you know best”; “yes, we believe you know your child better than we do and that you are making the right decision on their behalf”.   The word Yes puts a smile on our face.   We just wish we heard it more often.

Y is for Yay! When things go right. It’s that moment of internal celebration and the fist in the air. We did it! Well done to us!

Z is for Zest. We all need a bit of zest in our lives. A little bit of excitement and a thrill now and again mixed with a sprinkling of enthusiasm can make our lives really worth living. Doing a few daft things, having a laugh, a dance round the kitchen, a smile from a stranger (especially a good looking one!) can be just the sparkle we need!

Z is for zealous. Most of us have that fire in our bellies and can be tough as nails to get what we want and need for our disabled children and young people. We learn to be outspoken and to say what we think our children need and want. We will climb mountains and scale down cliffs to get the best. We are the warriors armed with love and passion for our kids.

Z is for zzzzzzzzzzzzzs. At the end of the day we are still up long after our friends without disabled kids doing the washing up, ironing, or learning from our networks on social media.  We have a lot to cram into one day. By the time our heads hit those pillows we are out for the count. If we can’t sleep straight away it’s often because we have too much on our minds so writing a list and keeping a pen and pad by our bed can help us get those muddling thoughts out on paper and helps us go to sleep.

Z is for Zany.   As parents of disabled children we could be labelled with being:

• Slightly eccentric,
• A little quirky,
• A bit different,
• Not the same as families with no disabled children,
• A bit erratic (would be nice to be erotic!),
• Crazy, or daft.

Would we want it any other way?!

Thank You

And finally on this last post we would like to give a huge thanks to all our wonderful and slightly Zany families who have contributed to our A to Z of Family Rights and Lives over the recent months. We could not have done it without you!

BuT Site Admin

Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.