Posted in The Up-side of Down's

Living with DS. My life’s nice! How’s yours then?

My daughter and disabled son all dressed up for a weddiing
We do occasionally get invited – and we do dress appropriately 🙂

It can be a tough road, with many potholes along the way. A great deal of information about what a disaster Down’s Syndrome can be is available already online. I don’t intent adding to it! Instead, I prefer to accept that for many, their mindset is such that they will never manage to get over their own discomfort and that becomes a barrier for them in seeing beyond the disability to the person and the valuable life that they are leading.

Raising my son mostly on my tod has helped me to shift in my thinking; to learn to accept and love unconditionally. For that I am blessed and will forever be in my son’s debt. I believe that he has more than compensated my daughters too, and continues to do so, in the way that he loves and cares for them both. In addition to often trying (and succeeding) in wrestling them to the ground in an over-exuberant squeeze.

But not everyone is so fortunate.

When I think about how my little boy has enriched my life, and taught me so much, it becomes harder for me to understand or recognize the misplaced sympathy that I unwittingly receive from ‘well-meaning’ onlookers. There’s that old Native American saying about walking a mile ‘in another man’s moccasins’ that springs to mind. Some rare folk do, and become lifelong friends and enjoy the hospitality and fun of my little family along with the challenges. And offer me (and receive back) love, loyalty and friendship.

I remember a very famous and successful self-made millionaire complaining that when he became rich he found that he had to make a new set of friends because many of his old ones couldn’t handle his new situation. It’s a bit like that when you have a disabled child born into the family. As you adapt; changing priorities to take into account the needs of the weakest and most vulnerable member, some can’t take it.

They perhaps become so overwhelmed with the feeling that your life has become a tragedy that they don’t know what to say or do. Or they try to fix it. Some feel that if only your child didn’t have Down’s then ‘everything would be OK’. Or that if you just told off your child a bit more, the behavior would then change to what they consider acceptable. They seem unable to see the issues of their own lives because they feel that this challenge eclipses all others. But that isn’t my experience at all and while I will sit and tolerate them ‘pointing out’ what they consider to be the terrible realities of my life I have to make something of an effort not to return the favour.

Lots want to cure my child and become despairing when they realize they can’t. It’s like suddenly realizing that the world isn’t flat after all; a monumental paradigm shift that strangely leaves others, who can just walk away whenever they want, more shaken than the those of us stirred into just getting on with it.

If you are guilty of this and reading this article trying to work out how to ‘handle’ a friend with a child with Down’s Syndrome – well, just resist the temptation please! Your friend isn’t ‘in denial’. Or swimming in any other middle-eastern river come to that. Whenever you feel the urge to sit your friend down to talk about Down’s Syndrome and how impossible it all is, may I suggest that instead you walk into their kitchen and wash up. That would be a much wiser strategy. And will actually have a positive impact on your friend’s life and your relationship. If you are reading this as a parent of – well, I expect you recognize what I am saying and I want to say to you, as I have told myself many times – it isn’t your job to manage other people’s anxieties, you have enough on your plate!

The truth is, when a family is possibly already being stretched to the extremes in managing this new set of challenges, perhaps a single parent family, or juggling jobs an other children too – one just doesn’t have the time to counsel and explain to everyone else. I know – I have tried it and become exhausted and frustrated in the process, before looking to my children to work out what is really important. And it is always them.

I have experienced, in the context of a social gathering, (and in front of my children) along with the ‘A’ (abortion) question, moving on to a discussion about why hadn’t I considered the use of sedatives and what was the possibility of full-time institutional care in my district? It seems that once you have decided to raise your own child that you gave birth to and are happy and determined to do that, some still just don’t get it.

Disabled or not, if you do what’s right for the kids first and put the rest of it second, life seems to fall neatly into place. That is the simple strategy that I have learned from being a mother for 23 years. Whenever I get worried and try to handle other people’s inability to cope with the idea that I have a child with Down’s Syndrome, I just take a deep breath, wipe away the tears and remember that.  And then I am OK again. My son has never disappointed me or made me feel any less of a person. But other people have. It is something I am still working on.

The upside to this is that you really do discover who are your true friends and family. When the invitations to birthday parties and weddings seem a bit thin on the ground, or you find out about them long after they’ve passed, look at it this way: lots of fuss and hassle (and expense) saved! And when you are invited…it is by people who love you and all your family – unconditionally.

Thankfully, although I have experienced the grief of losing some members of what I considered to be my nearest and dearest circle, others have joined, done their homework, and have been a source of incalculable love and support. And have had their lives enriched from being involved in my life and my son’s. And have happily shared my mocassins and found them to be warm, fluffy and comfy. Always handy when the road can be steep and rough. But hey, what a view!

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Surviving in the remote but glorious Pembrokeshire 'outback' isn't enough - I wanna thrive and feel happy to be alive....I hope my posts make you feel that way too :-)

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