'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 mode...my 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...
BECAUSE....SHE DESERVES PEOPLE TO "GET HER".