October - Down Syndrome Awareness Month

[Polegnyn Nemeara]

October is Down Syndrome Awareness Month in the United States.

What is Down syndrome?

"In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all." Source: National Down Syndrome Society (NDSS) https://ndss.org/about

According to the Centers for Disease Control and Prevention, approximately one in every 772 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition." Source: National Down Syndrome Society (NDSS) https://www.ndss.org/about#p_51

The TarValon.Net community is no exception to this statistic. With permission, a short bits of conversation with someone in our community who loves someone with Down syndrome will be shared this month. Hopefully, they will be able to answer any specific questions directly, but resources they have provided are shared below if responsibilities take them elsewhere.

Additional information and resources near you:

• Down Syndrom Diagnosis Network (DSDN)
• National (U.S.) Down Syndrome Society (NDSS)
• Canadian Down Syndrome Society (CDSS)
• European Down Syndrome Association (EDSA)
• Down Syndrome International (DSI) - information and map of available resources in your area of the world

There is also Ruby's Rainbow. This registered 501(c)(3) nonprofit provides college scholarships to people with Down syndrome so they can attend post-secondary institutions and achieve their dream of higher education.

Do you know someone with Down syndrome? What are some practical ways to support them and their caregivers? What would you like for the world to know about Down syndrome?

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Eta:
Badges -

https://i.imgur.com/7EbZX3c.jpg

https://i.imgur.com/d5Nj2If.jpg

https://i.imgur.com/Vo9Gf61.jpg

https://i.imgur.com/epGBguN.jpg

Sigs -

https://i.imgur.com/UULuJug.jpg

https://i.imgur.com/SLF8B2R.jpg

 

[Alexr al'Petros]

My nephew has taught me joy, patience and kindness,

and in return...I taught him to ski....

 

[Lilli O' Neeus]

 

[Polegnyn Nemeara]

Looks like your nephew had a blast, @Alexr al'PetrosThank you for sharing! This is a perfect way to introduce this week's post about Down syndrome, too.

As mentioned in the initial post, here is a short conversation (shared with permission) with TarValon.Net’s own @Juliya Karisu about being a parent and caregiver to her daughter with Down syndrome.

What do you wish people knew about Down syndrome and raising children with Down syndrome?
I wish people knew how much people with Down syndrome (and all disabilities) enrich the lives of others. Before I had my daughter, I was blind to a lot of things, ableist, and not willing to have an open heart. Looking back, I can only be grateful that she was placed in my life because my eyes have been opened, and my heart now has more room.

Bottom line - if you have a child with a disability, you will love them so much. I never thought I was the kind of person who could have a child with a disability - I feared it. I am not more special than any other parent; I am not more loving or patient. But, having a child with Down syndrome has made me a better person.

Another thing - my experiences with doctors and therapists have been so positive. Unfortunately, this is not the case for a lot of parents and individuals with Down syndrome. There continues to be a lot of ignorance and negative attitudes towards those with disabilities, especially when it comes to things like genetic testing.

What have you found helpful/not helpful?
The most helpful thing has been being able to talk to other parents who have children with Down syndrome. Something that is not helpful is if people pity me.

[What are] ways people could support others with Down syndrome as well as parents of small children with Down syndrome? How could I, as someone who isn't experiencing Down syndrome, support you? What could I do if I showed up on your doorstep and wanted to help?

I've been thinking about this a bit, and one of the things I think most people can relate to, is remembering that people with Down syndrome are neurodivergent, just like many others in the world, but they are treated differently because it is visually noticeable. Treat someone with Down syndrome the same you would anyone else, with respect. They have their own gifts and talents, weaknesses, and they love others and are loved. They don't deserve estrangement or ridicule because of their genetic makeup. I always felt uneasy around anyone with disabilities because I didn't know how to act or what to say. The old saying 'If you don't have anything nice to say, don't say it at all' comes to mind. But most parents I know just want you to love their kid.

Supporting therapies and other programs that help kids with disabilities is a practical way to help. Often our local development centre will have fundraisers because so much help is needed. Or consider volunteering at a centre. If you are looking for a meaningful career, how about a therapist? People with Down syndrome benefit a lot from Occupational Therapists, Physical Therapists, and Speech-Language Pathologists. My daughter is 2 and has OT, PT, and SLT about once a month, but could use it more often. The demand is high, for all kinds of kids.

Respite is something that is always needed. Taking care of a person with a disability can be physically and mentally draining. My daughter is still young so I'm not very knowledgeable about respite right now. But even people who will take a kid or adult for a day is helpful. Respite is a paid position - it does not need to be volunteer as there is funding for it (in US and Canada for sure). If you have free time and would like a job that is rewarding, consider providing respite care, casually or scheduled, for people with disabilities.

[As most people] are already working or don't have time, here are 3 things I think people can do.

1. Educate yourself about Down syndrome - but don't use Google. Any national Down syndrome society will have information about it. Talking to parents and siblings of people with Down syndrome is also a great way to know more.

2. Be friendly towards people with Down syndrome and treat them with respect. Understand that everyone is different - and that's a good thing! People with Down syndrome shouldn't be less valued than anyone else.

3. Try to get to know someone with Down syndrome if you can. It is enriching to get to know someone with a disability and you won't regret it! Most people with Down syndrome are willing to get to know you!

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The second portion of this conversation will be shared in the following weeks. In the meantime, what questions do you have for Juliya? It should be noted resources answering your question may be posted instead given Juliya’s responsibilities elsewhere.

 

[Polegnyn Nemeara]

Several recommended movies illustrate the challenges someone with Down syndrome faces. Be sure to check them out!

NORMIE (LINK - http://ondemand.normiefilm.com) – When Annemarie, a young Dallas millennial, looks in the mirror she hates her own reflection because she sees Down syndrome. She is desperate for a normal life. For her, full independence from her parents and the hope of starting her own family are just out of reach.

She sets out on a journey of self-discovery. She speaks with a celebrated illusionist, an empathic doctor and an atypical pastor, as she considers what it means to be limited, flawed and broken – a script at the root of her pain. Along the way, Annemarie not only confronts her own illusions, but also listens to the struggles of several parents of children with Down syndrome, including her own. For a subculture that passionately wants to be seen as normal, the question becomes––what gives a person value?

Peanut Butter Falcon – Zak runs away from his care home to make his dream of becoming a wrestler come true.

Rides Like a Girl – The inspirational story of Michelle Payne, the first female jockey to win the Melbourne Cup despite facing the odds of a 100 to 1. (Interesting fact: this is one where the main character has a brother with Down syndrome. The main character's brother is the real-life brother of the person she's playing. So he is playing himself in the movie.)

Where Hope Grows – A baseball player whose professional career was cut short due to his personal problems is suddenly awakened and invigorated by a young-man with Down syndrome who works at the local grocery store.

Have you already seen them? What surprised you?

 

[Juliya Karisu]

💛💙
Love the video of your nephew skiing, @Alexr al'Petros !

 

[Alexr al'Petros]

Love the video of your nephew skiing, @Alexr al'Petros !

Thanks Juliya Sedai, I learned so much from him!!

 

[Polegnyn Nemeara]

For the remaining full week of October, here is the remaining bit of conversation with @Juliya Karisu.
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Do you have a preferred Down’s Syndrome-focused charity we could link to or find more information about the syndrome?

My preferred (Local) https://www.basketsofloveds.com/ - Their goal is to provide comfort, support and resources to new parents by welcoming them to the Down syndrome community in a positive way.

https://theluckyfewfoundation.org/ - a global storytelling movement, shifting narratives to create a more inclusive world where everyone belongs.

https://rubysrainbow.org/ - Dedicated to providing college scholarships for students with Down syndrome, spreading awareness of their capabilities, and supporting their dreams of higher education and independence.

Is there anything you would like to have mentioned?

There is a lot of conversation around how people with disabilities liked to be talked about and treated. There are different preferences, words and phrases, etc. For instance, most individuals would prefer 'person with Down syndrome' instead of 'Down syndrome person'. If you are unsure about how to say something, most people are fine with being asked. I say 'disability' when it comes to Down syndrome, others say 'special needs'. There is no one right way. In the end, being humble and correcting yourself if someone tells you it's offensive is the best way to go.

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TarValon.Net has been posting supportive suggestions throughout the month about how to talk about Down Syndrome. If you missed them, here’s a recap thanks to the Canadian Down Syndrome Society (CDSS):

Spoiler

The Servant of All Team would like to thank Juliya Karisu for taking time out of her busy schedule to participate in this month’s focus on Down syndrome! You are a true Servant of All!

 

[Lilli O' Neeus]

 

[Alexr al'Petros]

Such great information!! Thank you.

 

[Veriendha ti al'Riaha]

Thank you for sharing @Juliya Karisu Sedai! And thank you for this month’s focus, Servant of All team!