A common question among parents in the Down syndrome community is, “What are some books including kids with Down syndrome?” Regardless of what online support group you’re in, there’s always a post naming off several books that promote inclusion and the disability community but those lists never quite capture the vast collection that actually exists. Nelly Pujalt, mother to two year old Ariel, took several days and put together an entire document containing the name of every book she could find. It’s “a collection of books relating to Down syndrome for children, parents and professionals for a variety of subjects such as behavior, sexuality, dating, education, memoirs, resources and children’s books.” We’ve posted the entire list here for your reference. - Lindsay Robertson
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Abortion is a common go-to for those in the medical field. Within the Down syndrome community, many parents hear it suggested one time too many. "Your baby has a 90% chance of having Down syndrome. We recommend abortion.” “There are several Down syndrome markers present. We recommend having an abortion.” “Down syndrome means an unhealthy and difficult life. We recommend abortion.” This is a huge concern for those in the disability community and an issue many are trying to correct by educating medical professionals and the general public.
Instead of taking the doctor’s advice when the Bythwood’s were told there was nothing they could do for their baby, they went a different route. They decided to lean on hope and turn to their religion.
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Surely, when Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence he wasn’t thinking of people like my son who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.
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As you know, the law in England currently allows you to terminate a baby after 24 weeks, and indeed to moments before they are born, if they are found to have a “serious disability”. Serious disability is not defined by the law and has been interpreted to include Down’s Syndrome. Heidi, a young, capable woman with Down’s Syndrome wrote to you. She has said that she finds the law “deeply offensive” and is launching a legal battle against the government with regards to this. Your Department of Health and Social Care said; “any decision to terminate must rest on the judgement of the women and her doctors”. As I see it, there appears to be two predominant voices within this debate; those who believe it is an issue of women’s choice, and those who believe it is an issue of the human rights of those with disability.
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As a member of the Down syndrome community, I’m heartbroken and outraged at the same time. As a mother, I’m scared of the world my children are being raised in. As an individual who cares, I’m pissed off that there isn’t more awareness being made focusing on these three kids. Why are these cases not national news? Why don’t they get the same attention as any other murdered child?
For those reasons, I’m going to share the information I’ve found on two of these cases below (you can find information on Kylee Willis here – Adam Hughes’ preliminary hearing is scheduled for June 19th, 2020. He has been charged with “assault on a child causing death.”) and the link that includes the contact information for those working on each case as well as examples of the letters that you can send if you’d like to reach out and help make a difference.
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There are a lot of different mantras or phrases that come along with the Down syndrome community: "the lucky few," "downright perfect," etc. One of these phrases is "more alike than different."
When Alice was born and someone told me that she will be "more alike than different" and said that she would walk, talk, go to school, etc., it did give me a lot of relief. I was happy that she wouldn't be an outcast.
More than 54 million American school children are learning at home right now. Seven million of those students have disabilities. Since the outbreak of the Coronavirus in March, 45 states have ordered schools closed, and 15 states are keeping schools closed until the end of the school year. That list will surely grow as the virus peaks (find an updated list here).
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Down syndrome definitely has a certain stigma. There are lots of misconceptions surrounding it. Countless myths. That's why so many people are so scared of it. In that spirit, I want to go through the top five myths about Down syndrome and correct them. You likely won't find these answers on Google or in textbooks or at doctors' offices. But I spend 99% of my life with an adorable little girl with Down syndrome, and this is the reality.
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Every career has it’s own jargon and technical language. Special education is no different. It’s easy to get lost in the maze of abbreviations: FAPE, LRE, IEE, ESY. The legalese can be intimidating: Continuum of Placement, Annual Yearly Progress, Prior Written Notice, Due Process. But understanding and using even a few of special education’s key terms can help you gain the respect and authority you need at the IEP table to affect positive change for your child.
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To what extent do prenatal screening tests, which can assess the probability of having a fetus with Down syndrome, affect humans’ quality of life in the world? Can these screening tests tell us how much a fetus will not be afraid of telling the truth in the future? Can they tell us how well a fetus can have acceptable behavior in the future? Can such screening tests be 100% accurate in determining what kind of fetuses will not murder others, steal things, or cause corruption on planet Earth? Which of these screening tests can tell us how the quality of life of these fetuses, who are human beings, will be like or what kind of fetuses will live in a way that they will never disgrace human dignity? Can these prenatal screening tests indicate how the fetuses that are considered defective by carrying out these tests and based on their results would live and how they would influence other people’s lives and can they compare these fetuses’ impacts on the world around them with the influences of fetuses that are described as healthy fetuses who are regarded worthy of life in the future?
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Finding a lawyer familiar with the various needs of our unique kid was not that difficult for me. I just called a friend who happened to be an attorney and she did a little research for me. However, I quickly learned that finding a lawyer knowledgeable in all of the actual details themselves isn’t so easy. There are specialists, but the costs can be extreme and we were definitely not prepared for that aspect. Creating a will, powers of attorney for health/medical, and a special needs trust can run a range of prices from anywhere between $400 and $8,000. We’ve now learned that it’s always a good idea to save and be prepared for these costs and maybe even more so than we actually anticipate.
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During this Global Pandemic and the spread of COVID-19 (Coronavirus), we want all of our self-advocates, advocates, ambassadors, volunteers and followers to know that our thoughts are with you during this trying time. We know how important it is to stay up to date on the most current and accurate information and will continue to monitor the news and CDC as closely as possible. In the meantime, we want to go ahead and briefly summarize COVID-19, the affects it could have on individuals with Down syndrome and pre-existing conditions as well as a list of CDC recommended safety tips. We will also list additional resources for you from other credible sources and will continue to update the list as needed.
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Did you know that Down syndrome is named after a British doctor named Dr. Down? Or that the earliest known case of Down syndrome traces back to the year 500? Or that today is the absolute best time to have a child with Down syndrome? Keep reading to learn a comprehensive account of the history of Down syndrome -- from the year 500 to the present day.
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Ask any parent of a young child with Down syndrome, and they would tell you that their biggest worry is speech. An important aspect of speech development is being able to hear well and clearly, and kids with Down syndrome are more likely to have hearing deficits than their typical peers.
Any unresolved hearing loss can further impede speech and language development, which is why the American Academy of Pediatrics and the Down Syndrome Medical Interest Group recommend hearing tests at birth and then every six months up to the age of three for kids with Down syndrome.
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There are tons of ways to celebrate WDSD. The list below is just 21 of those ways to give you a head start to preparing and planning for 2020’s World Down Syndrome Day Celebration!
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Having your student with Down syndrome included in the general education classroom with proper supports can often seem like a pipe dream. Just look at the statistics: only 16% of our loved ones with intellectual disabilities (ID) are included in general education classrooms most of their school day.
But the research and federal law back up full inclusion with support, so how do we get there? Well, I was lucky enough to find inclusion expert, Nicole Eredics from The Inclusive Class. This amazing inclusion teacher has created a huge database of resources to support full inclusion for even students with Down syndrome. You can also buy her book (shown below) with over 40 modifications for students with the most significant needs.
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When it comes to special needs and Down syndrome, there are literally hundreds of blogs you can follow; From funny, heartfelt and inspirational to educational and knowledge-based. We know how hard it is to find blogs that really pull you in, make you feel a part of the family and leave you waiting anxiously for the next post. We also know that sometimes it’s impossible to find a blog that gives up-to-date information on current happenings or opinions on books and helpful materials. So we decided to make it a little easier for you.
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If you haven’t yet seen the movie, you’re missing out. Big time. But don’t just take my word for it. Instead, I turned to the Down syndrome community and asked them to give me one good reason why the public (you if you’re one of the few who has yet to see it) needs to watch The Peanut Butter Falcon. This is what they had to say:
This movie shows what a relationship should be like between an individual with Down syndrome and a typical person. People with Down syndrome want to be treated like everyone else. This type of relationship was beautifully displayed in The Peanut Butter Falcon! - Lauren D.
11-year-old Salome is a female of color with a disability. English is a second language for her immigrant parents, and her extended family lives far away. Many students like Salome and their families are disenfranchised by the special education process, and don’t feel like they can adequately advocate for inclusion and proper supports under the law.
“I’m always mindful of our privileges and challenges,” says Salome’s mother, Catalina Angel. “In many ways we are like any family with dreams of a good future and in may ways we struggle in a place where we constantly have to demonstrate that we have worth.”
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