Sunday, 23 November 2014

We all deserve to be understood.

 'it doesn't matter what people with Ds are called or whether information
out there is right or wrong...
just put your energies 

into loving your child'.

I am a member of a few Down syndrome facebook sites - both local and international,
and this statement is a very interesting yet concerning pattern,
and it is one that is growing.

Firstly, I am very capable of loving my child AND learning AND unlearning without compromising that love.

"The more I put into my bucket 
of love & knowledge, 
the deeper my bucket becomes 
& I have never, ever lost any love from continuing to fill it!"

Secondly, for me, the more I learn and then in turn, teach others about Down syndrome, the more I understand Miss Chloe and the more I am able to give her. AND the more others learn to GET HER

Although she is Chloe to me, she also has Ds and that is my reality. I am grateful for my deep acceptance of this fact, as it has enabled me to work and adjust to her peculiarities.

For me, I have had to learn to dual-parent with Chloe.
she operates in 2 modes.

1 - classic Ds & 2 - Classic family-of-origin. For a very long time, I parented from
mode 1 - family-of-origin, cause that was what I knew, but when my girl was in Ds GOD, was there WAR!!!.

So, I got learning everything I could about Ds personality traits & how to manage them.
My girls actually has a very subtle shift from one to the other and I have learned to notice the signs, and to watch for it.

She has a change in her eyes. From these learnings and my ability to be flexible with my parenting ways, has become much more  of a peacefull person,  and we have much less conflict.

One of the strongest examples of this is when Chloe is in family-of-origin mode, it is possible to reason with her - or at least offer her a consequence and she will think about it & decide if it is worth it or not. 

When she is operating in Ds mode, there is just no reasoning with her AT ALL & she doesn't care about the consequences. I have learned at these times to not go on & on at her, but to give her a little time till she makes the 'shift'. 

I can also sometimes 'shift her' through making her breath deeply & doing a quickie meditation with her. Now had I decided she was 'Just Chloe' and treated her as such, I reckon I would have had a breakdown.

I am finding it fascinating how many opinions there are in the world of Ds around what the 'proper name' is for Ds, and whether there are varying degrees of it. 

Seriously, if the people who live in this 'land' can't agree, 
HOW are we ever going to confidently 
educate the general public????

I am not going to use this blog to air my knowledge , however I want to just get people thinking about how we can possibly expect to demystify Ds in the 21st century, when we can't even find common ground on a few very basic Ds facts??

So, as a wrap-up, it is BECAUSE I love and in my heart truly accept & embrace all of who she is, that I learn as much as I can about the syndrome and try to correct others in the general public & medical profession...



Wednesday, 12 November 2014

Down syndrome - Lets raise the expectations

OK, OK, I have to put my hand up for this one & admit I have been known to 
under-estimate Miss Chloe on maybe more then once occasion!!! 

But I do like to think I have learned from this!!!

From the day she was born, I was determined to do everything in my power to ensure she was the very best Chloe she could be (this was no different with Shannon). I was flapping around in unknown waters, but even then I was amazed at the general idea that people with Ds (Down syndrome) are incapable.

"When a person is diagnosed with carrying a baby with Ds, they are usually counseled to abort. The reasons given are bazaar to say the least: "They will never be happy, They won't ever walk, They won't ever have friends, The will never be able to toilet train, Your friends will be uncomfortable around you, They will never contribute to society. Sadly these are all regular comments.
My Pediatrician informed me Chloe would have the mental capacity of a 6 year old!"

I do wonder how a scan can pick up all this amazing information...When I remember - of course it can' is the assumptions of ignorant people (yes even many medical professionals are ignorant).

Poor old Miss Chloe has had to prove herself every inch of the way with some people.
My Pediatrician at the time told me she'd never walk....just before she walked into his room behind me..

Same goes for talking, toilet training and many other things. In the end I sacked him,
I needed a team who believed in my child - not bring her down. 

"I have made it a mission to seek out the people who will push Chloe and don't have low ceilings and expectations."

Chloe is a lazy person deep down and given the opportunity she is happy to park on the lounge and do very little. I don't give her the choice of staying home or going out with me.
I actually tell her "You have a right to very unhappy about coming BUT you are coming anyway". I find, once Chloe gets somewhere, her attitude changes and she starts to enjoy wherever it is.

She has a fear of failure and HATES learning anything, but as I have learnt over and over with people with Down syndrome

"You can teach them MOST things
BUT you MUST teach them EVERYTHING"

I make it a point to push her through the negativity and fear to to just break each new task into small bites. 

There is nothing that fills my heart more then seeing the look of enormous pride on that girls face when she accomplishes and conquers. 

It tells me that feeling the pull to rescue her and do it myself or to give in to her whinging or performing is absolutely the least loving thing to do for her, as the gift of enablement can only be achieved by allowing her to do for herself.

I have found that some of the worst offenders when it comes to placing low expectations on people with disabilities are the people who have been trained in disability. I actually wonder what it is in the training that has gone amiss to have sooo many people coming out with such preconceived ideas..... 

I tend to hire people completely outside the disability field to work with Chloe on things like Personal Training, swimming, creativity and many other things. They just don't seem to go in with the idea of what she can't achieve.

As I mentioned at the top of this article, I am guilty of underestimating Miss Chloe.
Every year, I set one or two new leanings to be achieved within that time-frame. Every single one of them has been learnt - not only withing the time frame BUT within weeks of us starting!!!

 "When I Believe In Some-one and teach them to do something,
I have given that person their greatest gift."


Disability doesn't mean denying dreams.

Horse-riding, kombiing through Central Aust, safari in Africa, helping people in need, seeing lots of the world...."

Oh hang on that's MY dream...not my children's dream.....

If there is one thing I find very strange about many people when they have children is they often inadvertently place their own dream and aspirations onto their children.

I know my parents did this for me & because their dreams were nowhere on my radar of life, they are disappointed in me and nurse some very ripe resentments.  

"I vowed I would never put that pressure on my children and I believe I have been pretty successful in that department. One of my biggest dreams was to have at least  or (preferably both) of my kids to have the same passion for horse riding as I do.."

NEITHER..of them have ever been the slightest bit interested...
and I pushed hard before realizing I was trying to get them to live my dream.

Shannon (my eldest)has always dreamed of travel and helping others less off than her. Yes, these are also my dreams BUT that is where the similarities end. 

I want to do these things with some ...OK...many creature comforts. Shan, on the other hand loves roughing it and getting down and dirty. She has no interest what-so-ever in money and only wants enough to get by with.

In one way, I may well be partly responsible for her love of travel, as I bundled her into a Kombi van when she was 18months old (not even toilet trained) and headed off into the sunset, wandering around this fine land we call Australia.

"When Miss Chloe arrived in this world, I had big dreams of her being fully integrated & becoming independent."

Well, I am here to tell you, when it came to 'never having any child of mine attend Special School', I had to completely back down.

I was guided by some amazingly wise people who knew not to tell me things straight out, but to plant a seed and let it develop.

I got permission to have Chloe out of school an extra year. My thinking was, she would be more mature and better able to manage school with an extra year in kindergarten.

When school shopping, it was gently suggested I just 'have a look at' the 2 special schools in my area. For whatever reason, I did and what I found astonished me!!! 

The physical environment was inviting and beautiful. The principal and staff were friendly and interested... not only in me but in Chloe as well. Oh my God...they even spoke to her!!! This rarely happened with the mainstream schools.

 They had high expectations of the students and they had the extra specialists
(OT, Speechy, PT etc on staff). Chloe didn't need to compete with the mainstream kids with education, but she needed to socialize with them, so I integrated Chloe into mainstream holiday programs and other social activities. She had/has the best of both worlds.

After a very long argument with my ego, I bit the bullet and sent her there. For a short while I felt like a loser, a traitor, a failure and was embarrassed to tell people where she went.

This was only for a short time because Chloe not only settled in beautifully, she shone and over exceeded everyone expectations!!!

Chloe loves being in an environment with like minded people and I know now she would not have flourished in mainstream school.

She had a dream of driving. Well this did not make me feel warm & fuzzy, but I zipped my lips and decided to make her dream work for both of us.

"Miss Chloe is not a great reader,
so I bought her the Learners manual
and told her she has to be able to read
easily to be able to drive.
Over time, she decided
she Don't want to drive,
because she can't see well. 
But man, did her
reading & writing improve!!!"


"Another dream She had was to become a hairdresser. I bought her a hairdressing 
practice head for her 21st and her would 
do all sorts of amazing styles with it."

I have come to realize, as time has gone on that  I need to be listening to what my children say to me and encouraging them with their matter how bazaar or uncomfortable it is for me.

I always said Chloe would NEVER work in a supported employment environment...well...Chloe WANTS to work in a supported environment. 

My reality is I don't have a right to force her to live by my goals and expectations. I have a moral duty to support and encourage her to live and achieve (or not) her own dreams.

One of my dreams is to drive around the outback. Chloe and I did a drive a few years ago & I was bluntly informed by her that she is a city girl and doesn't want to do any more...I can do it on my own....

The one dream Chloe and I share is her dream of living on her own, with her friends and we started working towards that one when she was born.

"After all isn't raising children all about teaching them to chase their dreams and feel great about themselves? I am very proud to say, Chloe is definitely in the above category and makes all my dreams come true"