All of my past and future blogs are now posted on my new website Born at the Right Time
1) Disabled Bays No more aimlessly driving around a crowded car-park with only the precious blue bays left vacant and out of bounds. You get the privilege of parking in Disabled bays and on double yellow lines.
2) Jumping the Queue Whether it's boarding a flight, ferry or euro-tunnel you get preferential treatment, and nothing matches jumping the queues at a theme park.
3) Carer gets in Free I pay for my child and then I get in free, whether it’s the cinema, zoo, theatre, swimming pool or many more. Caution: If you want to go and see the latest Saw movie, it might not work; if you’re a Disney/Pixar fan then you’re set.
5) Endless Appointments Your importance cranks up to fever pitch. Everyone wants a piece of you as you go to endless therapy appointments. You even get the pleasure of having perfect strangers trample through your home checking you out; it’s a lot like Big Brother but without the sleep.
6) Extraordinary Parenting Other Mums boast about their exceptional ability to multi-task as cleaner, cook, accountant, teacher, chauffeur etc., but that isn’t a patch on the skills you will develop:
• Nurse - not just the magic kiss and apply a plaster type but the real McCoy who draws up dozens of medications daily, learns about PEGs, seizures, resuscitation and other hard-core stuff
• Occupational Therapist – making and adapting things, always seeing opportunities for development
• Physiotherapist – daily stretches, 24 hour positioning, handling and active therapy
• Speech and Language Therapist – interpreting noises and movements, creating a conversation practically on your own, learning about high-tech talking aids
• Wheelchair Technician – making adjustments and adaptions
• Visual Impairment Specialist – stimulating sight and promoting all the senses
• Dietician - not the petty "Eat your greens" or "Have you had enough to drink?" but more the calculating calories, introducing essential nutrients and multi-vitamins, tailoring feed rates and dose in relation to reflux, weight gain and tolerance
• Weight lifter – as your child grows in weight, but not ability, you learn to lift a 28kg child with the ease of any burly man at your local gym
The list goes on……..
7) Every Detail Counts You notice everything: every grimace, facial expression or hand gesture. Each movement speaks a thousand words and you learn to notice, treasure and interpret them all. You then appreciate the other children around you in a deeper, more profound way. How they grow, develop and learn so effortlessly, as though Spock has hit hyper-drive.
8) Learning to Live in the Moment Every day and every moment is precious. You learnthat life changes in a heartbeat, so you make choices based on what you believe is important: the people, the relationships and the memories. It’s less about yesterday or tomorrow but rather all about today.
9) Love beyond imagination When life pulls you into a thousand pieces, beyond what you thought was your natural limit, you realise you are held together by the thinnest of strands. On inspection you notice that this minute, delicate thread is woven by the most potent and powerful emotion imaginable, love; wordless and endless love.
10) Transformation is inevitable Immeasurably and forever, you, your views, your family and your life are changed. You see beauty where you once saw pain, you see joy through your tears and life becomes a gift, never to be taken for granted.
Please comment and let me know what are your Top 10 Advantages?
Please comment and let me know what are your Top 10 Advantages?
20 comments:
I can't give you my own top 10, but I could write a long list of the advantages of being a friend of a parent of a child with severe and complex needs - you've helped me understand what's important in life, live in the present, and recognise that who we are is much more important than what we do. Thank you for sharing your life - keep writing!
I enjoyed reading this light hearted reflection on some of the 'advantages' of having a child with severe and complex needs. I have a link up for parenting posts "The Sunday Parenting Party" and I'd love you to consider linking up. Congrats on your MADs nomination and good luck.
The "Sunday Parenting Party" sounds intriguing and a great opportunity. Any chance you could let me know exactly how it all works please?
I love this so much, you have managed to sum this up so perfectly. Far better than I could do.
If parents of children with additional/complex/special needs (whether term suits) didn't have a sense of humour we would probably end up in a corner rocking & not in a good way lol although after nearly 10 yrs of parenting a disabled child then adding another to the equation 6 yrs later everything has to be funny,what should be a serious outlook on life has turnt some what into a bit of a circus show but it keeps us going :) god where would any of us be if we sat around dwelling on things we can't change :/
What a load of crap! My son was disabled and died a month before he was 7. He lost his life, his future, what should have been! He would have been 12 this year and yes, you learn to love unconditionally and multi task and function with no sleep but you write this like it compensates. Clearly whoever wrote this doesn't have a disabled child! Utter rubbish!
Ok, I see you have a disabled child and I have a sense of humour and I accept that if my son was here for the time he should be, im glad hr spent it with me. But nothing compensates for having yor hopes and dreams crushed when yor child will be disabled, not walk or talk, eat or live independently. Sorry this is just stupid
I'm sorry for the loss of your son, however I don't think that the author had in mind that any of the "advantages" were meant to be taken literally. It was just looking at life a bit more on the positive side. Any of us parents do indeed go through the extra tough experiences of caring for a disabled and it can be a very dark time, but I found this refreshing to have it turned on its head. Sometimes you have to appreciate the time available together because it can easily be cut short at anytime (my daughter is life limited) and lets face it any one of us could be hit by a bus tomorrow!
I don't have a disabled child - but a relation of mine who does shared this blog. All carers, whether of the elderly, the disabled or the infirm are, in my opinion, unquestionably the most heroic members of our society. I didn't actually find the article funny but the warmth of the words have helped to bolster my already profound respect for the sacrifices and love that carers give. I suppose the individual who has concluded that the article is "utter crap" maybe too angry to appreciate mine or the authors sentiments but I think it was wonderfully and passionately written.
I've really enjoyed reading your posts. I'm also a mum of a child who has multiple disabilities and there are occasional days where it feels that life can't throw much more at you before you crumble. But the next day we get up, brush ourselves off and carry on caring for and loving our children. Sometimes, like everyone, we need to look at life from a different angle...as you have in this post.
Keep on blogging....I look forward to reading your posts.
Anne (mykidlovesbroccoli.wordpress.com)
I rad your blog with great interest. I had a daughter with multiple disabilities. Unfortunately she passed away at 7 years old. I agree with all your comments. After loosing my daughter in 1994,I too found Jesus. God bless you and your family.
I rad your blog with great interest. I had a daughter with multiple disabilities. Unfortunately she passed away at 7 years old. I agree with all your comments. After loosing my daughter in 1994,I too found Jesus. God bless you and your family.
My Top 5
Parking Concessions- wonderful
Money - when my daughter died. They take away you income from day 1. No time allowed to "get over the loss" not that you ever do of course. I had to start job hunting before the funeral.
Free car - Has to be returned on day after bereavement.
Loss of friends - most of your friends are parents of children with disabilities and they can't face you.
Loss of celebrity status - we had constant invites to parties and events and were as special guests. No one phones you after bereavement.
Communication - You get calls for months after bereavement from DHSS as was, social services, school, transport, NHS who, despite numerous letters don't know your child had passed away.
JESUS
Thank you for your comments.
I truly am sorry for those of you who have lost children; I have no idea how that must feel, but I suspect one day I will. Having been to three funerals of my son's friends in the past year or so I have watched dear friends bear the heavy burden of grief. The practical and financial implications of this reality is far reaching and makes a dire situation even more unbearable.
The internet is a powerful medium and many people have seen my blogs. It seems whether I am expressing heart felt emotions and grief, or trying to look on the bright side, tongue in cheek, people are upset and offended.
Life can be so very tough at times and today I'm just trying to live life well, loving my family and smiling as much as I can.
Please accept my sincere apologise if what you have read has made a struggle you are facing even more difficult, I genuinely hope and pray there will be someone around you able to offer support.
I am a very lucky Mum to two healthy children of 12 and 3 and after an extremely testing day with both of them, your blog has reminded me just how lucky I am. Please carry on blogging, if only to remind some of us not to be so complacent.
Keep on keeping on, you are such an inspiration. Xx
My comment was not meant with any malice and I appreciated the benefits that made my life a little easier. I was more shocked than upset by what I read, it genuinely read like these things compensated for the tragedy of a severely disabled child. I loved my boy, I was proud he was mine and proud of the impact he had in such a short life. He changed me forever and I have two mainstream children also. The love is different and undeniable. You appreciate, you value and you learn to love through all odds and you become their voice. I loved my boy and will always love him and I appreciate your tongue in cheek outlook on a tough situation. I am not religious and I have not turned to religion but I accept some people are and do. I wish you a long and happy life with your boy
We can never walk in another person's shoes. As much as we may wish with all our hearts, we cannot take away another person's pain. Every day we will hear of terrible things going on in the world, and tragic things happening to people we care about. I can think think of things right now. And at the same time, the most joyful things are happening around us, and I can think of those things too. My view is that, as Rachel is doing so authentically now, we should tell our stories in order to encourage others - so that we do not feel alone, so that the transformation she so ably describes can take place. So we can 'see beneath the beautiful' (a plastic society, where we pretend life is perfect), and also 'see beneath the ugliness' (our tragedy and pain). And I have found the way to do this is to 'rejoice with those who rejoice, and mourn with those who mourn'. Standing with you Rachel - keep writing. Lots of love, A x
Thank you for commenting again. The first few 'advantages' are completely tongue in cheek. Clearly I would rather my son be able to walk than have an oversized vehicle to try and park. Someone did once suggest I was lucky to have a blue badge..... That's where the irony stemmed from. The irony extends further when I get in free as a Carer to the zoo I have no problem taking me money off as my son is blind and can't see the animals anyway and as for theme parks he'd just scream the whole time.
I am sorry for your loss, my son is eight and two of his friends died just before their eighth birthdays. There simply aren't words to express how wrong it feels to see a parent bury their child.
Life is tough and when you love a child with a disability it's hard not to live in the land of should. If you read my blogs 'a road less travelled' or 'loving the skies I'm under' you'll see I'm not often not so flippant and I felt a little light hearted perspective was in order.
I wish you and your family all the best in the future and again thank you for taking the time to comment.
I am a mum to a life limiting child and I thought your article was absolutely brillant! If we cannot make light out of sadness then as a human race we would lose the ability to carry on, curl up and just cease to exist! Keep up the brillant and thought provoking blog.. .other parents who dont agree should go to other blogs or elsewhere rather than slam you. No one is forcing them to read your blog...xx
I'm a step Mum to a teenage boy with CP. He spends 50% of his time with his Dad and 'our/his family' and the rest with his Mum. Whilst his condition is not life threatening, we also try not to think of it as limiting also ... we are the crazy family (or are we) that travel on long-haul flights, go to theme parks, go to places other children (and adults) dream of ... like the Grand Canyon, Yosemite, take holidays in challenging places where we have to dismantle the wheelchair, carry him over styles, locked gates and boulders and re-assemble at the other side.
We have 3 children of different ages and needs and love them all equally, giving them as much attention as they each need.
This is important, as every child has needs, every child needs attention and you need little bit for yourself every now and then (don't forget that - it makes you a better parent).
Even though they are obvious, we try not to dwell on the "can't do's" - but focus on the "Let's do it anyway" moments .... life is full of challenges, it's how you deal with them and how they get you down (or strengthen you). You might think it's easy for me to say this ... but when your son looks at you and says "Why do they treat me different, I'm not a baby", "Why do they talk to me like I'm stupid" or (and this is my favourite) "What's up with them? They are talking really weird at me" - then you realise that your child wants to be like every other child, want opportunities, wants to be treated the same, wants to be equal with their friends, not treated like a 'needy case'.
So, yes, be there for them at every moment you can, love unconditionally (like I needed to say that to you), make your child feel that their needs are important (all of your children's are) - but let them be as unique as the next child and experience as much as the next child (where possible).
More importantly LOVE, LOVE, LOVE your children - nothing can compensate for this!
I read your post and I did get the 'tongue in cheek'. I have a disability myself and it's not that obvious (I do my best, but giggled at some of the perks). Having a disability and caring for a child with a disability is something of a challenge. I don't expect the perks, have become accustomed to some harsh comments for some of them, but I have to say there are times I've appreciated someone thinking out of the box to let us have them ... it makes the challenges we rise to a little easier sometimes!
P.S. I'm a blogger, but because I don't publicise a lot of the personal things - I wish to remain anonymous
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