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A brief hello…..

October 4, 2011 By Sam

Hello all,

My name is Sam, tired and stressed thirtysomething minion of Jasmine (5) and Poppy (2).   Jasmine does not approve of many things, one of which being her minions taking time to use the laptop ( which hurts a surprising amount when slammed shut on your fingers!), so I anticipate making lots of late night brain dumps on here.

 

Jasmine has always been an intriguing little person. But, a couple of years ago, we began to notice that she was very different from her other friends who had Down Syndrome. Over time, what were initially dismissed as cute little quirks became rigid and difficult behaviours that seemed to dominate every waking moment of our day. Being a slightly neurotic ‘Helicopter Parent’, I had probably made a name for myself amongst Jasmine’s care team, so it took a while to get anyone to take our concerns seriously. However, being proved right about her having the Dual Diagnosis of DS/ASD at the age of 4 years bought a mixture of relief and despair. Surely Down Syndrome was enough? Autism was scary, we couldn’t see it, it wasn’t tangible, you could stick your head in the sand and pretend that it wasn’t happening, unlike DS. It felt like starting all over again, only with an added feeling of isolation.

Fortunately, Jasmine has little patience for navel-gazing minions, so we soon started trying to understand and deal with things as best as we could. I would love to say that this snippet of information makes getting inanimate objects lobbed at your head and plates of food thrown at you because the beans had touched the potatoes, or some other transgression much easier. But, that is still a bit of a pain. Slowly, as Jasmine communicates with us more, we can reduce these kind of incidents, which is wonderful. I’m not sure that my dentist agrees, he has made a fortune out of my rapidly unstraightening teeth as  result of this. If I had a plastic surgeon, he would be happy about all of the rhinoplasty I would be having too, no doubt.

Recently, thanks in part to Jasmine’s wonderful school and her therapists at Brainwave, she is venturing out of her little world and beckoning us in to join her.  She now speaks, signs, has firm friends (and a big old crush!) and manipulates the world to do her bidding. Which usually involves puppets, guitars (Rebelling against her trance fairy parents already), toast and dancing. She also loves her little sister very much, after a decidedly shaky start. Hopefully she will be as welcoming when her baby sister arrives in February. I will, however, be armour plating the Moses basket, just in case she isn’t!

I look forward to sharing the antics of my very funny, fantastic little flower with you all.

A rare close up of the warring siblings. Poppy looks happy, doesn't she?

 

Filed Under: Blog

About Sam

Sam - Tired and stressed minion of Jasmine (5), who has Down Syndrome and Autism and Poppy (2), who is a diabolical tyrant. We are expecting a third and final little flower in Feb '12.

I like Philosophy, trance music, shiny purple things and Domo-Kun.

Where To Turn

  • Future Of Down’s Facebook Group
  • The Down’s Syndrome Association
  • Cerebra
  • Down’s Syndrome Education International
  • The Down Syndrome Research Foundation UK
  • Down’s Syndrome Scotland
  • Down’s Heart Group
  • Home Start
  • Contact A Family
  • The Family Fund

And there are many more useful contacts and support resources on our pages.Down's Syndrome Association


 

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