If you are just now joining, please read Part 1 first!
Okay, now that everyone is in the know, lets finish this list!
6. How to think outside the box.
Others say “lazy baby”, I hear “how can I accommodate”. I have never been good at accepting the word “NO” (Tons of stories there, but I digress). Not everyone goes from A to Z in a straight line. But we can all get there if we have been given the right tools for our learning style!
Kids with Down Syndrome are known for struggling with retention.
Claire was not retaining shapes or letters. So, that told me it wasn’t being presented in a way that Claire wanted to learn. For shapes I bought a shape sorter and threw all the shapes in the bath. I filled the bath with bubbles and Claire would have to find the shape I called out, then throw it into the bucket! She absolutely loved it!!
For letters, we played hide and seek with letters that she got to help cut out.
There are millions of other ideas. leave a comment or email me for more ideas and I would be more than happy to share them with you!
Let’s be honest here, unless you have/know a child with special needs you do not give much thought to inclusion. So, with that said, I did not know exactly what inclusion entailed. Again, I researched, I discussed with my circle (doctors, family, friends, groups), then I compared notes on different school systems. Wow!
The school system sets the path for your child’s future.
Fight for what you think is the best for your child’s needs. Just know that no two school districts are created equally. Some schools do not have the resources needed to provide the level of care needed. Yes, they should. But, wouldn’t it be easier to find a school that will support you from day one, as opposed to fighting the uphill battle every single step of the way? We, as advocates, are already fighting for every little thing. It is okay to have someone in your corner not just supporting but pushing for the same results!
8. How to advocate
We are all passionate about certain issues. However, hosting a rally and making signs is a thing of the past. So, how do you advocate in this day and age?
First, once I was ready, I started joining other Down Syndrome groups. I did this through several platforms. Facebook, Nat’l Down Syndrome society, mom groups, etc. I learned from these groups. I listened to their stories, the way that their families were clueless about Down Syndrome, and what my daughter is actually capable of doing.
This societal lack of knowledge lit a fire in me!
Because what is advocating? It is educating the public!
Who do we educate: Educate the family, educate friends, educate their friends, educate co-workers, classmates…
However, where do you start? I started with the school. I felt like that is where the change needed to happen. I have spent hours researching goals and milestones for the IEP. I would push the team to explain to me why her goal was X when the rest of the class is at Y. I have provided teachers with webinars, ideas that I learned from the conferences (for example straw therapy, Mat Man, holding a cotton ball when learning to write, etc), I even bought and donated a bike for physical therapy!
What are we advocating? what is advocating?
I started learning percentages and facts about the Down Syndrome community. I got involved with the Buddy Walk, step up for Downs, and going to Down Syndrome conferences. I also watched webinars, youtube videos, podcasts, and news groups.
Where: to be honest I advocate everywhere we go! I wear my Down Syndrome T-shirts as a walking billboard. I have a Down Syndrome tattoo on my wrist so that when people ask me about my tattoo I can use it as a teaching moment. I even find myself educating other kids and parents at the park lol!
However, if you need a place to start, start here: Social media and schools
When: I am always an advocate. To be honest I am not sure how I couldn’t be! There are so many faucets to Down Syndrome that I could not expect people to know unless they are educated.
Why: to ensure that my daughter and the rest of the Down Syndrome community is given the proper tools, treated fairly, and an opportunity to be a viable member of society.
I feel it is my job to plan for her future and set her up for success.
Next steps: always have a goal in mind, or the next step. Next I want to talk in front of the school. Prepare a PowerPoint. Do Lunch and learns for companies…the opportunities are endless!
9. stop comparing to the Jones’s
You can not imagine the conflicting emotions that take place when a typically developing child surpasses your own.
It is heart-wrenching.
You want to be happy for the other child. The child has done nothing wrong. In fact, has accomplished an amazing milestone. You are constantly asking “why” or thinking it is not fair. STOP THAT! Every child, Every person, has their own path. This path has different timelines and milestones.
The important thing to remember is to NEVER set limits!
Lastly is #10
We ALL need support
Do not do this alone.
It is hard. It is a struggle. You will take 1 step forward and wind up 10 steps back in a single blink.
Sometimes you break down for absolutely no reason.
Some days you just don’t see a reason to wrestle your child to get her dressed just to fight with her to then brush her teeth, then brush her hair, then put on shoes, then…
That support comes in different forms for different people.
It may look like 1 person who you consider to be your pillar/sounding board.
It may look like an army.
Do what you need to to find the support you need.
Where can you find the support from people who get your situation?
Support groups, mom/dad groups, therapy, family, conferences, school, co-workers, peers, advocating events (this is my #1 spot to find like-minded people/families)!
- Stop and Smell the Roses
- Think outside the box
- Inclusion Works!
- Advocate for what you believe in
- Stop comparing
- Build a support Team
I really want to hear from you! What has Down Syndrome taught you?
Also, are you struggling with any issues? Send me an email at firstname.lastname@example.org. I would LOVE to do a post on it and get you the information that you need!
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