She really can read!!! Honest!!!

So Nellie was home schooled for 8 years from grade 1 to 14 years old.  She was a great reader all those years.  Recently our kids decided to go to school and, of course, we show the school what the kids have been working on.  A few weeks into it I go and have a parent/teacher meeting. Nellie’s reading books were so basic it was shocking.  I ask about it but was told this was her shown/tested reading level.  I provided some further examples of reading material she has accomplished and a few weeks later I am told how she was reading to the whole class – on the mic no less.   While she was working on the laptop and asked a teacher what something read, the teacher said “err not sure Nellie you tell me” and just played along…. Low and behold there she was reading.  This information spread among the staff and next thing you know she is reading aloud in front of everyone. 

No my girl is not easy; she will not make anything easy for you.  She just doesn’t really give a shit about much, well Zac Effron is pretty special to her……, but showing people she can read?  Mmmppphhh she just doesn’t care!!!!!! 

See what I mean about Nellie?  She is who she is for one reason only, because that is who she is.  Not to impress, show off or look good or any other reason most of us behave certain ways.  No she does what she feels is right and true and honest.  And we can’t learn anything from these ‘down syndromes…..’??????  Of course we can.  In fact we can learn from everyone but I promise you that which is important in the world we can learn from adults/children with disabilities.  I am proud to call her my daughter.

I am here too!!!!

At the Elvis concert last week, Nellie just had to be noticed.  As mentioned earlier (in Dance with me?) she wanted to be noticed, she danced with random men, but she also had to upstage the performer.  She went on stage many times sometimes just to hand him a picture of himself!  He was gracious and seemed ok with it; the audience seemed ok with it.  Were Peter and I ok with it?  We were physically cringing….. yep faces covered, bent over, back to the people (which is silly because we were at the back of the concert….).  But our recovery time has improved, we merely cringed then moved on…!  People who knew Nellie belonged to us, turned to laugh or smile WITH us; we gave them a look of ‘well what are we supposed to do?’ But we moved on pretty quick and got on with the business of selling liquor tickets.  Liquor helps, it helps us all!!!!  Just kidding what helps is a sense of humour and that is something Peter and I have always have had but really needed once we had Nellie.  We have had a lot of laughs (lots of tears, well me not Peter) with Nellie, about Nellie, and if Peter was writing this he would remember most of them and articulate them really well.  But not me, I forget them all, unless I write them down, but I don’t and now they are gone to the clouds, gone forever until Peter reminds me of them……!  But then we laugh and thank our lucky stars that we have the family we have and are grateful.  That we belong together and were made for each other… all of us. 

That our family is ‘colourful’ not grey and dull, we are all colourful, different, interesting, unpredictable.  I like to think of us as rainbow.  When people say to us “awwww Nellie is so lucky to have parents like you” there is so many, many things wrong with that statement (too many to go into here a whole separate blog) but we are all lucky we have each other.  Yep I am glad I have who I have, wouldn’t change it for the world….. well unless Brad Pitt was ready and available!!

Wanna Dance?

At an Elvis impersonation concert last week, Nellie went around the room asking random men to dance.  Some agreed and did and her face lit up and she danced so well and happy.  Others refused and she shrugged and moved to the next man.  Ha to those of you who refused (yea I am giving you the finger right now) too bad you were not that special anyway.  She doesn’t give a shit actually!  Me?  Oh I was in the back watching, marking the cards of those refusers….. ‘I will get you later’.

I spend my life watching people interact with Nellie and, as I like to say, MARK THEIR CARD.  That just means “yep buddy I got you I will never forget you and when you need something, even just a smile, I will just walk away and watch you shrivel up and die… oh yea I got you pegged”.  That’s what it means to me and I have a lot of cards in my pocket….. hundreds, all ages of people, all races, all abilities, and all sexes.  But when things happen to Nellie, Peter will remind me to really look at Nellie.  Does she care?  Well she must right?  Who would like to be refused all the time, ignored a lot of the time?  Not me, I have rejection issues, surely Nellie does too? 

But I think I should rip them up, burn them.  Because Nellie doesn’t have any cards.  She doesn’t collect cards like a collection, like me, and holds them tight til her knuckles go white.  She just moves on, shrugs, yea shrugs. I got to try that, I am shrugging now…… well I may have to practice….. but these ‘cards’ they are not healthy, they are burning a hole in my pocket….. in my heart……   How can I be learning from Nellie when I carry these around, she doesn’t and it’s her life?  Yea I birthed her and breastfed her for 3 years but its her life not mine and she seems to be doing just fine.  I need to butt out.

Like to avoid eye contact with people with Down syndrome? I would!!!!!!!!

For those who fear people with differences and fear making eye contact with them this entry is for you!!!  Beware, run and hide because Nellie is in town!!!!  With Nellie you will have no choice but to have her in your face.  She will be IN YOUR FACE FOR SURE.  Have lots of fear – and mark my words be scared!!!  She will be right there and if you take her on you will be hooked – hook line and sinker. 

Oh and if you have a scar, zit, mole or simply a piece of hair out of place on your face….. arrrggghhhhh beware.  She will stare at it, turn her head like a puppy to get a better look at it and then will not be able to restrain herself and she WILL move it!  It will bug her so much and will have so much restraint for 30 seconds…..  I will often try and anticipate her and suggest the person wipe off the ketchup from their chin before Nellie does it for them…..!!!!   Yea that’s my girl.

You can walk around life trying to not make eye contact with some people who are different or who scare you but its totally your loss.  Nellie is intriguing, engaging, funny and a drama queen from hell.  Go there, look at her.  And guess what?  She has two different coloured eyes!!!!!!!!!!!!!!!!

Blend? No way Jose, not when Nellie is around.

My daughter is in your face; right there you have no choice about it.

I really like to blend, want to fit in and look like everyone else.  I know I can’t its just not me, I am loud, opinionated, have an accent, stressed, am a bit of a crazy lady sometimes.  But sometimes I would  really like to blend, other times I want to really show I am not like the rest.

But with Nellie I do not get a choice.  Yesterday we walked into a small town restaurant and there was one elderly gentleman in there enjoying coffee, my two other children and I walk in naturally (probably louder than any other family would) and Nellie  was a few steps behind us.  She walks in and says “oh so sorry” to the guy!!!!  He doesn’t notice but Nellie is not deterred, so with voice and body language does the whole shocked persona and “I am so sorry”.   I am just so irritated with this so give her a look of disgust and ask “what are you sorry for?”  and still unconcerned just responds “I don’t’ know” and actually she doesn’t care!!!  She probably really doesn't know why she is doing it, but whats important she doesn't care, she does what she feels like at the time because she wants to, undetered by social norms and rules.

Thank god she doesn’t care, she was just making an entrance, I was irritated by it but she just brushed it all off.  She will do anything for an ‘entrance’ and this is the latest ‘thing’ she does.   The other two kids just shrugged as it is a usual aspect in their life.  Neither embarrassment nor disgust, I should learn from all my kids.

She likes to ‘get lost’ in stores….!!! Yea.  She is not lost, just making herself known in a store, like “hello anyone noticed that Nellie is here?”  Well of course everyone has noticed.  They have noticed the irate mother and annoyed siblings, they have noticed the loud family down ‘that aisle’, they have heard us saying “no Nellie don’t eat that”, they have noticed the person with Down syndrome, they have probably felt some pity for us or her, lots have probably walked on quickly(wisely) to avoid eye contact with Nellie.  But if by any slight, miniscule chance someone has not noticed she will make sure they do!!!!  “Oh lady I am lost I can’t find my mother” or over the loud speaker “mum where are you?  Its me Nellie, hello?  Mum where are you?”  Of course I am usually right there in front of her saying “Nellie stop, Nellie don’t do it”.  She will be at customer service only 3 steps ahead of me saying ”can’t find my mum”  and behind her I am waving!  Yea life with Nellie is always eventful and never normal.  We don’t blend.  Camouflage is over rated anyway.