IEPs and More

'Thomas & Friends' Welcomes First Character With Autism A staple of children's television is introducing its first-ever character with autism, a series regular who will be voiced by an actor who's on the spectrum himself.

'Autism is a “dynamic disability”. What this means is capacity & functioning are not concrete & may fluctuate dependent on factors such as environment, cognition, executive function, processing capacity, Interoception/exteroception, neuro-fatigue, anxiety, communication differences, burnout & sensory overwhelm. This means Autistics may be capable of a task one day, but unable to perform the task at another.'

Credit: Neurodiversally unbroken

DOWN SYNDROME AWARENESS DAY 12: The Families You Meet >>> Having a child with Trisomy 21 gets you automatic admission into the 'The Lucky Few' Tribe like this amazing GA family pictured here. We are a global parent warrior 'organization' who fights and advocates tirelessly for our kids and on some deep down extraordinary level...it's like we've known you for a lifetime. No matter where in the literal world you are, we have your backs. If you hurt, we hurt, when you celebrate, we celebrate with you, if you cry, we are crying, when you loose a child, we all mourn with you, when your child has major surgeries, we are on our knees praying for you. When we say 'I love you', we freaking mean it to the INTH degree. We don't even need to have met you 'personally' because thanks to social media, we have our community on digital stand by and if someone so much as looks at our kids with a side-eye, our whole Tribe is gonna know about it in every state and country (that 'share' button is a powerful thing;) You'll know us by our '>>>' tattoos, we sport our T21 swag, our blue and yellow awareness colors, and our immense never ending pride for our kids, and loads of coffee-so much dang coffee. We can spot another rockin parent from a mile away and when we see each other out in public whether we know each other personally or not, you're getting 'the hunger games' wave just to let you know 'hey I see you, you're not invisible today'. If we're in an IEP meeting we can be easily depicted by the stone cold 'lets get down to business' mama/daddy bear face. On the playground we are hovering like stealth fighter jets with missiles armed and ready for deployment. In the NICU/ICU you'll see us advocating relentlessly for the best care for our kids and sadly in some cases...fighting for their 'worthiness' of life. You'll see us at buddy walks along with multiple other fundraising events because we support the organizations who get laws changed and fight for our kids NOW and for their future. We make post like these because we know their are new parents out there searching for anything other than the negatively portrayed information they just got from their doctor and we want you to find your way to the truth about the pure joy this 'lucky few' life has to offer. If you are already a part of our Tribe WE LOVE YOU AND YOUR CHILD SO VERY MUCH! If you are new...well buckle up, keep your hands and feet inside the rollercoaster and welcome to the most spectacular ride of your life, we can't wait to 'meet' you! To see more Dolls be sure to follow us on FB and insta . For info on becoming a Doll email me @ ‘[email protected]

I’m going to talk about a difficult topic for me tonight, but I hope it sheds light on an important issue that affects people with apraxia. A new research article came out that states individuals with CAS have poorer social outcomes than other groups of individuals with speech difficulties. From my first-hand experience, I can confirm that it’s true. To be honest, I’ve never had a lot of friends. I’ve always wanted more friends, but I find it extremely difficult. I grew up getting bullied so severely I was pulled out of my middle school because of it. As I was growing up and the friends I would make, they would oftentimes make fun of me that they were my “only” friends. Long story short, I cut off those friends because they were extremely toxic. I now push myself, and I have some friends and, honestly, great ones. But the truth is being completely transparent; I’m so used to being on my own that I’m okay with it. But I can say I now have friends I love dearly. We as a community really need to work on the psychosocial effects apraxia has. If your child needs a referral to a therapist or a psychiatrist, as the research stated, people with CAS have a greater likelihood chance of increased feelings of depression and anxiety as well as poor social outcomes; we need to make those referrals. We must focus on the whole person. We have to do better for the kids growing up. I am absolutely determined to do so.
Love,
Jordan Christian 💙

Today is the beginning of Down Syndrome Awareness Month. I thought about what I wanted to say and then something that came up in our IEP meeting last week came rushing to my mind.

As the meeting was wrapping up, our advocate told us something her typically developing high school daughter said, “Mom, I only see kids with Disabilities when I have a hall pass to go to the bathroom.”

My husband and I looked at each other. Because that is a line I wrote in my book that is coming out in spring 2023. The thing is- I was in high school 20 years ago.

In 20 years, segregating kids with Down syndrome and other intellectual disabilities is still our default. Despite 30 years of research only showing benefits for inclusive education, only 17% of kids with ID are in general education classrooms.

I was speaking to another advocate in a different district about our son’s IEP. She said- if someone in her district saw this particular thing in his IEP- they would automatically segregate him.

So, my question this Down syndrome awareness month is this: why is segregating people with disabilities still our default?

I know being in a general education classroom all day is not the right answer for every individual. But if we continue to allow segregation be our default setting, then what are we raising awareness for?

Because I think people with Down syndrome want what every one wants: belonging.

How can we shoot for belonging when we draw a line in the sand as soon as our kids hit school age? You learn differently, you act differently, so you can’t sit here. This is the message that not only our kids with Down syndrome receive, but our typically developing kids receive as well. They see kids with Down syndrome within the context of their realities: there is a world for them and a world for me.

What I want for Down syndrome awareness month is movement to get us all in the same world. And it won’t happen unless it starts at school.

Researcher Erik Carter puts it this way, “Early segregation does not merely predict later segregation; it almost ensures it. The trajectory we establish in school is quite likely to continue after graduation. We must establish a trajectory of full and meaningful participation. When it comes to transition preparation, location matters.”

I want my kid to live in the real world, not a “special” segregated one. I want this world to tell him the message: you belong here.

So, we can raise all the awareness we want but unless the reality starts shifting at school, 20 years from now my typically developing elementary aged daughter will tell the same story: I only saw kids with disabilities in my high school if I had a hall pass to go to the bathroom.

We can’t let that happen.
Get my free ebook, “Disability Advocacy 101- a Parent’s Guide”:
https://view.flodesk.com/pages/6036b72454e757a12d5eece0

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Accommodations are something to never be ashamed about! ❤️

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Pathways-2-Success 🎨Image credits & I CAN Network Ltd seen 📸

I'm the one teachers dread because I get things done and make sure my child is treated fairly.