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October is Down syndrome awareness month! People with Down syndrome attend school, work; participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways. 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. Down syndrome is the most common genetic chromosomal disorder and cause of learning disabilities in children. There are approximately 400,000 people living with Down syndrome in the United States. Down syndrome has nothing to do with race, nationality, socioeconomic status, religion, or anything the mother or father did during pregnancy. 80% of children with Down syndrome are born to women under 35 years of age. There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%. People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. Speech and language therapy are important parts of intervention services for children with Down syndrome they help promote cognitive (mental) and social development. Many children with Down syndrome can develop reading abilities in advance of what might be expected for their cognitive and language levels. Adults with Down syndrome are also at high risk for conductive hearing loss. They can have frequent ear wax impactions that may impair hearing. Routine ear examinations can assess wax impactions, and periodic screening with an audiologist can formally assess hearing loss Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today. It is recommended to wait until after the second birthday to begin considering toilet training. For children with Down syndrome, it has been found beneficial to wait until after the third birthday to begin the process. While age is an important component of readiness, parents should consider other factors as well when considering toilet training, such as bladder control, predictable stool patterns, motor skills, behavior readiness, instructional readiness, and ability to indicate needs. Executive Order 2015-15, establishes Employment First in Michigan and helps foster an inclusive environment that will create competitive employment opportunities for working-age individuals. The order aims to improve access to workplace support and services for people with disabilities. Individuals with Down syndrome have the opportunity to participate in a variety of post secondary education programs, such as: Academic programs or courses at a community college or other college or university; Vocational or training programs, such as apprenticeships and trade schools; or Innovative programs that combine these two types of education. Employment opportunities for individuals with Down syndrome according to National Center on Health, Physical Activity and Disability (NCHPAD) includes 57 percent working a paid job, 26 percent volunteers, almost three percent were self-employed, and 30 percent were unemployed. Educators, job counselors and families need to work together to broaden employment opportunities for people with Down syndrome by developing clear plans from education to post-school employment. Are you a parent of a child with Down syndrome? The American Academy of Pediatrics (AAP) developed a special guide for parents to help monitor their child’s medical care. To access this guide, visit https://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Pages/Children-with-Down-Syndrome-Health-Care-Information-for-Families.aspx NDSS strongly condemns the use of the word "retarded" in ANY context. Using this word is hurtful and suggests that people with disabilities are not competent. Motor skills develop at a slower rate for children with Down syndrome than for those without. These delays in motor development reduce infants’ opportunities for exploring and learning about the world around them and therefore further affect cognitive development. Poor oral motor control may impact the development of language skills. Thus the need to work with therapists to develop a program of interventions. As part of a same study in which parents were surveyed, Drs. Skotko and Goldstein, and Susan Levine also surveyed hundreds of siblings to find out what their experience had been having a brother or sister with Down syndrome. Here’s what the siblings said: 96% had affection towards their sibling with Down syndrome; 94% were proud of their brother or sister with Down syndrome; and, 88% felt they were better people because of their sibling with Down syndrome. Since the 1970s, public schools are required by law to provide a free and appropriate education to children with Down syndrome. Inclusion is a philosophy of education based on the belief in every person's inherent right to fully participate in society. Inclusion implies acceptance of differences. It makes room for the person who would otherwise be excluded from the educational experiences that are fundamental to every student's development. True acceptance of diversity ultimately develops within the school environment and is then carried into the home, workplace and community. Inclusive education is more than mainstreaming. Mainstreaming implies that a student from a separate special education class visits the regular classroom for specific, usually non-academic, subjects. Inclusion is an educational process by which all students, including those with disabilities, are educated together for all, or at least most , of the school day. Generally 80% or more of the day is what is considered inclusion by proponents-a majority could be anything more than 50%. With sufficient support, students participate in age-appropriate, general education classes in their neighborhood schools. Part of advocating for individual with Down syndrome is knowing the current Down syndrome research and breakthroughs Check out this site to help learn more. https://www.lumindrds.org/ Abnormalities of the cardiovascular system are common in Down syndrome. Approximately half of all infants born with Down syndrome have a heart defect. Many of these defects have serious implications and it is important to understand them and how they may affect the child so that appropriate medical treatment may be provided. The most common reason for protrusion of the tongue in people with Down syndrome is poor muscle tone (hypotonia). Various muscles of the body can be affected by hypotonia, including the bowel (causing constipation), lungs (difficulty breathing) and limbs (affects the ability to stand, sit etc). The tongue, of course, is another muscle and can be difficult to control if the person lacks strength in that muscle, which can cause eating and swallowing difficulties. How can you make a difference in your community? Tuesday 21 March 2017 marks the 12th anniversary of World Down Syndrome Day. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder. Down Syndrome International encourages our friends all over the world to choose your own activities and events to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities. Join us at the Michigan State Capitol Rotunda on March 21, 2017 from 11:00-12:00 for CADSA's Annual World Down Syndrome Day. Celebration Event. Learning that a new child or an unborn child has Down syndrome can be a confusing and stressful time for parents. Did you know you can call CADSA and we have a board member that will help you access information, listen and welcome you into our community. Too many parents have bad experiences from how their medical team delivered the diagnosis that their child has Down syndrome. Fortunately, research, guidelines, and some training exist on how best to deliver the diagnosis. While more medical professionals are delivering the diagnosis in a better way, there remain too many who are not. But, it doesn’t have to be this way. Doctors need to hear the voices of parents to help them understand how to best deliver a diagnosis. Children with Down syndrome are more than a diagnosis, they are SO MUCH MORE! Happy Down Syndrome Awareness Month! Please don’t let October be the only month to have Down syndrome SHINE! Continue to advocate and educate throughout the year!
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Foto: Promo plakat (Sunčana strana dlana) SVJETSKI je dan sindroma Down, koji se obilježava na prvi dan proljeća, što je prilika da se upozori na značajne poteškoće s kojima se još uvijek u Hrvatskoj susreću osobe s Down sindromom i njihovi roditelji. Od 2006. godine 21. ožujka se obilježava kao Međunarodni dan osoba s Down sindromom. > Šaljite nam fotke: Šarenim čarapama za podizanje svijesti o Downovom sindromu Prema Izvješću o osobama s invaliditetom Hrvatskog zavoda za javno zdravstvo iz siječnja 2013. godine, u Hrvatskoj živi 1.528 osoba s Down sindromom, od toga u Zagrebu 319. Oko 55 posto osoba s Down sindromom su djeca i mladi do 19 godina, podjednako oba spola, što pokazuje da je Republika Hrvatska izuzetno poboljšala zdravstvenu skrb građana s Down sindromom i omogućila im dulji životni vijek, posebno kroz operativne zahvate srca na koju su djeca s Down sindromom upućivana kao i sva druga djeca, što nije bio slučaj prije 15-ak godina. Oko 62 posto vještačenih osoba s Down sindromom u sustavu socijalne skrbi ima potrebu za punim opsegom tuđe njege i pomoći. Najčešće zabilježene komorbidetne dijagnoze su umjerena mentalna retardacija, prirođene srčane greške, poremećaj razvoja govora, oštećenje vida. Prosječno jedno od 650 novorođene djece rađa se s Downovim sindromom. Taj poremećaj sprječava normalni tjelesni i mentalni razvoj djeteta. Down sindrom smatra se jednim od najčešćih genetskih odstupanja pri kojem postoji višak jednog ili dijela jednog kromosoma što uzrokuje različite probleme u psihofizičkom razvoju djeteta. Odstupanje se očituje u tome da se tijekom diobe spolnih stanica 21. kromosom kopira tri puta stoga je i 21.3. simbolično odabran kao datum kada se obilježava Međunarodni dan sindroma Down. Osim klasične trisomije 21, postoje osobe sa sindromom Down koji imaju dvije različite vrste stanica, jednu s normalnim brojem kromosoma, a drugu s 47 kromosoma, tzv. mozaicizam. Postoji i treći oblik kada dolazi do translokacije dijela kromosoma 21. Mozaicizam se javlja u samo 1-2 posto slučajeva sindroma Down, a translokacija se javlja u 3-4 posto slučajeva. TEKST SE NASTAVLJA ISPOD OGLASA U Hrvatskoj je trenutno 68 djece s Down sindromom potpuno integrirano u redovni obrazovni sustav Udruga Down sindrom Zagreb, koja u sklopu projekta "Sunčana strana dlana" i ove godine organizira obilježavanje Svjetskog dana sindroma Down, upozorava da svakom djetetu s Down sindromom u Hrvatskoj još uvijek nisu osigurani pravodobna intervencija, te stjecanje vještina i znanja na temelju kojih bi se ono moglo uklopiti u školski sustav. Djetetu s Down sindromom treba dati mogućnost da uz pomoćnika u nastavi krene u školu te na taj način ostvari pravo na obrazovanje, stjecanje novih spoznaja i znanja, ističe udruga. U Hrvatskoj je trenutno 68 djece s Down sindromom potpuno integrirano u redovni obrazovni sustav (64 u osnovnu školu i 4 u srednju školu), dok je 30-ak djece ušlo u djelomičnu integraciju. Ulazak i dobivanje mogućnosti školovanja u redovnom obrazovnom sustavu ovisi o dovoljno ranoj stručnoj intervenciji (edukacijsko-rehabilitacijskom tretmanu) koju je dijete prošlo, stečenim vještinama i znanju, te o pripremljenosti za školu. Kod nas se još uvijek najznačajnijim kriterijem ulaska u obrazovni sustav smatra kvocijent inteligencije osobe što, ističe udruga, u nekim od zemalja EU već duže vrijeme nije kriterij ulaska. Ulazak ovisi i o otvorenosti i mogućnosti škole za uključivanje djeteta s Down sindromom. Tijekom vikenda u Zagrebu podržite osobe s Down sindromom Treću godinu zaredom Udruga Down sindrom Zagreb, u sklopu projekta Sunčana strana dlana, obilježava Svjetski dan sindroma Down tako što će u subotu i nedjelju prirediti prigodni program u glazbenom paviljonu na Zrinjevcu od 10.30 do 14 sati. Pozivaju Zagrepčane s obiteljima da se pridruže tog glazbenom događanju, te ako su u mogućnosti, doniraju rad udruge bilo kupnjom nekog od doniranih proizvoda na štandovima bilo pozivom na otvorenu liniju za donacije 060 92 00 (poziv 5,00 kn + PDV). Prihod je namijenjen održavanju terapija s djecom i odraslim osobama s Down sindromom na području Zagreba i Zagrebačke županije.