30 Sep Self Advocacy.
I recently completed a Parents as Case Coordinators course through Lifestart, the early intervention program we are with for Ariel. It was a 7 week course once a week for 2 hours. Lifestart is an early intervention program for all types of disabilities not just Down Syndrome. It was a really good course and I got to meet some really great people.
The course covered topics like goal setting, family services, self care, problem solving and self advocacy. Self Advocacy is where I got the most from this course. I am a peace loving person and sensitive by nature. I lack(ed) skills in assertiveness. I actually didn’t think I would need to be “assertive” to have my child included in the basic things all other kids have rights to. Apparently in some cases I do. I have even spoken to a few mums sho have older kids with Down Syndrome and they have also told me you have to fight for them all the way. I have also read a few blogs where mums have had to fight for inclusion. Just the other day I read one where a mum wanted her 3 year old son who had down syndrome to join her daughters gymnastics class. She was treated so awful and it was so awkward that she stopped going after 3 sessions. I am going to need a thicker skin I think.
When I first found out I was having a girl I instantly started to plan out her life. She would play music, be fit and maybe even do some modelling. I had all these dreams and goals …. maybe too many but I was excited. After my little girl was born and we were told she had Down Syndrome I initially thought something along the lines of ” well there goes all those dreams and goals” I felt a bit lost and was trying to think how life was going to be having a child with a disability. Fast forward 7 and a half months I realise I can have all the same dreams and goals and she will have a go at all of those things and more. I will make sure of it!
Maybe even modelling… 🙂
Here is a short video that I think is worth watching. It really gives you an understanding of what Down Syndrome is and what it is not. Thank you for watching.