As well as trials there are many advantages to loving and parenting a child with severe and complex disabilities. Here are my Top 10 Advantages.
1) Disabled Bays
No more aimlessly driving around a crowded car-park. With your precious Blue Badge you get to park in Disabled bays, assuming some unworthy driver hasn’t already nabbed it. If all else fails there’s always forbidden double yellow lines.
2) Jumping the Queue
You get preferential treatment when boarding a flight, ferry or euro-tunnel. Also nothing beats jumping the queues at a theme park.
3) Free Entry
After paying for my child I then get in free. Whether it’s the cinema, zoo, theatre or swimming pool. *Caution: if you want a freebie into the latest Saw movie, you might be out of luck. If you’re a Disney/Pixar fan then you’re set.*
4) Celebrity Status
No more blending into the crowd. People watch you wherever you go. Admittedly it isn’t a ‘Wow, look who that is’ stare. It’s more an awkward ‘Awww look at that bedraggled women and terribly disabled child’ gawp.
Attention is attention though, let’s not be fussy.
5) Busy busy busy
Endless appointments show your importance has cranked up to fever pitch. You go to numerous therapies while having the pleasure of perfect strangers trampling through your home, checking you out. It’s a lot like Big Brother but with less sleep.
6) Extreme Parenting
Think Mission Impossible theme tune. Imagine Tom Cruise clinging to a cliff face by his fingertips. That’s how I feel most days. I respect other parents who confess how tricky parenting is. I feel my experience pushes my Martial Parenting Arts skills further…
Nurse (not just the magic kiss and applying a plaster type) It becomes second nature to draw up dozens of medications. You learn 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. Speaking both halves of the conversation while researching high-tech talking aids.
Wheelchair Technician Making adjustments and adaptions.
Visual Impairment Specialist Stimulating sight and promoting all the senses.
Dietician Not just ‘Eat your greens’ or ‘Have you had enough to drink?’. You learn to calculate calories, introduce essential nutrients, tailor feed rates and dose. All in a fine balance with 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.
7) Every Detail Counts
You notice everything. Every grimace, facial expression and hand gesture. Each movement speaks a thousand words. You learn to notice, treasure and interpret them all. You then appreciate the other children around you in a more profound way. How they grow, develop and learn so effortlessly.
8) Living in the Moment
Every day and every moment is precious. You learn that life can change in a heartbeat. So you make choices based on what you believe is important. Cherishing the people, the relationships and the memories. It’s less about yesterday or tomorrow and all about today.
9) Love beyond imagination
When life pulls you beyond your limit you are held together by the thinnest of strands. A minute and delicate thread woven by the most potent and powerful emotion imaginable. Love. Wordless, endless and unconditional love.
10) Transformation is inevitable
Immeasurably and forever you, your family and your life are changed. You reconsider your definition of normal, success and worth. You see beauty where you once saw pain and joy through your tears. Life becomes a gift never to be taken for granted. While the grey tones of living shape, define and enhance the golden hue of precious moments.
So these are my Top 10 Advantages but there are many many more. What are yours?
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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
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.
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
This list is an attitude booster. I would add one more item to it. My child was born with a life-threatening birth anomaly. Because he was born in this day and age, he’s alive!
Thank you for your comment, I was just reading your website! Maybe even more poignantly we could say because he was born in a western country, he is alive. Having lived and worked in Africa for a short while I know the implications of the privilege of western medicine.