Ce inseamna sa traiesti cu sindromul Down? Muzicianul Sujeet Desai si mama lui, dr. Sindoor Desai, au discutat online despre provocarile unei astfel de vieti

de Iulia Rosca     HotNews.ro
Marţi, 20 martie 2012, 17:17 DoctorH - DoctorH Actualitate


Sindoor si Sujeet Desai
Foto: Arhiva personala
Un cromozom in plus si viata lui Sujeet Desai s-a schimbat. Nascut cu sindromul Down, muzicianul de 30 de ani a devenit Ambasador International al Persoanelor cu Sindrom Down. Canta la sapte instrumente si are centura neagra la Tae Kwon Do. A venit la Bucuresti pentru a canta alaturi de Paula Seling si Orchestra Camerei Radio cu ocazia zilei mondiale a sindromului Down. Impreuna cu dr. Sindoor Desai, mama lui, Sujeet va discuta in studioul HotNews.ro despre provocarile vietii sale. Mama si fiul au raspuns intrebarilor cititorilor HotNews. 

Sujeet a venit in redactia HotNews impreuna cu mama si tatal sau. Acestia au raspuns  intrebarilor in engleza.

Redam mai jos o parte din raspunsurile invitatilor, in limba romana:

  • Sindoor Desai: Cand am aflat in spital (vestea ca Sujeet are sindrom Down - n.r.), am fost socati,  speriati, foarte ingrijorati. Dar apoi am citit mai mult despre asta, am vorbit cu parinti care aveau copii cu sindrom Down, am intrat pe internet, am intrat in legatura cu Societatea Nationala pentru Sindrom Down. In principal, m-am educat singura in aceasta privinta. Am invatat ca pot face (copiii cu Sindrom Down) multe lucruri, doar ca intr-un proces mai lent.
  • Am citit ca muzica este o indeletnicire universala care ajuta la imbunatatirea vietii. In ceea ce priveste instrumentele, am incercat cu vioara pentru ca ajuta la dezvoltarea memoriei si coordonarea ochi-mana. A invatat cu copii obisnuiti si s-a descurcat foarte bine. A ajutat cu socializarea, cum sa stea la o ora intreaga, pana la capat.
  • Fratele sau canta la pian si Sujeet il asculta de afara la orele de pian si venea acasa si canta acelasi lucru. Si l-am dus la acelasi profesor si s-a descurcat foarte bine. Cand a inceput sa citeasca partituri, l-am dat la scoala si la fel, s-a descurcat. Apoi am citit ca instrumentele de suflat ajuta la dezvoltarea muschilor fetei. A inceput sa cante si acesta lucru a ajutat cu tonusul si clarinetul sau trompeta a ajutat foarte mult cu vorbirea.
  • L-am dat si la sporturi, la Tae Kwon Do. Apoi, pe masura ce copilul tau creste, stii ce ii place cel mai mult sa faca.
  • Are si o carisma de scena, nu i-a fost teama sa canta in fata publicului. Muzica si alte activitati sportive i-au dat respect de sine.
  • Sujeet (despre obstacole in viata): Mi-a fost greu la scoala, am fost necajit, tachinat de unii copii. Nu-mi place sa fiu necajit. Dar mi-am facut prieteni din randul publicului meu.
  • Sindoor Desai (despre cum a reactionat familia extinsa atunci ca a aflat ca Sujeet are Sindrom Down): Familia noastra extinsa este in India. Nu au inteles prea bine, nu au luat-o prea in serios, pentru ca nu aveau prea multe cunostinte. Eu si sotul meu a trebuit sa ne informam si sa le explicam si lor. Sujeet s-a nascut in 1981 si atunci acceptarea, includerea nu erau la fel de bune ca acum, nu erau programe speciale pentru oamenii cu dizabilitati. Acum sunt. Am decis sa incercam sa il invatam la acelasi nivel cu fratele sau.
  • Sindoor Desai (despre educatie): Cand avea 2-3 ani a inceput sa mearga, cu autobuzul scolii, la un program special de educatie numit "stimulare infantila",care dura o zi intreaga. Apoi a mers la o gradinita si scoala normala, dar cu program de incluziune. Facea o parte dintre activitati - matematica, citire, vorbire - intr-un program special, iar restul materiilor cu ceilalti copii.
  • In primii 5-7 ani de viata trebuie sa te concentrezi pe a il face sanatos. Limbajul se dezvolta mai greu, este mai greu sa comunici, eu am folosit limbajul semnelor. Mai tarziu iti va spune el ce ii place si ce nu. Sajeet nu a vorbit pana pe la 3-4 ani si am folosit limbajul semnelor, mai tarziu a invatat vocabular si a renuntat la el.
  • Sujeet (despre independenta): Stau singur in casa mea, in Buffalo, la cateva minute de parinti. Am oameni care ma ajuta in timpul zile, uneori seara. Pot sa conduc dar am permis de student si trebuie sa am langa mine un sofer cu permis.
  • Sujeet (despre modele): Kenny G este unul dintre idolii mei, patinatoarea Kristi Yamaguchi si fratele meu.
  • Sindoor (despre testarea genetica pentru sindrom Down pentru mamele insarcinate si optiunea avortului): testarea genetica se face pentru mai multe probleme genetice. Este o optiune personala. In cazul sindromului Down, cu progresele in medicina si educatie, pronosticul este diferit decat era acum 30de ani. Daca o mama afla acest lucru, trebuie sa citeasca mult despre asta. Cititul te va incuraja. Nicio mama nu vrea sa isi nege copilul. Continuarea sarcinii depinde de fiecare individ. Testul de pregateste mental pentru ce urmeaza. Eu nu am stiut, nu am facut testele.
  • Sindoor (despre separatism, discriminare): Cand esti separat, muncesti mai mult pentru a fi acceptat. Pana azi, el munceste mai mult, vrea sa fie acceptat, ei stiu ca sunt diferiti. Intr-un fel, discriminarea ii face sa munceasca mai mult.
  • Tatal lui Sujeet: Nu pot sa schimbi o eticheta, etichetarea se intampla, dar trebuie sa cresti nivelul de constienta.
  • Sujeet (despre invatarea instrumentelor): Am inceput la varsta de9 ani, vioara si pianul. Pe la 13 ani clarinet. Acum trei ani saxofon, acum 5 ani tobe, iar acum cateva luni trompeta, pe care am primit-o de Craciun. Am invatat singur tobe, saxofon...Am luat lectii doar pentru vioara, pian si clarinet.
  • Sujeet (daca ar avea o singura dorinta care sa ii se indeplineasca): Daca as avea dreptul la o dorinta, as vrea sa pot continua sa performez si sa cant. Vreua si o masina cool (completarea tatalui - Pontiacul din Night Rider).








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6518 vizualizari

  • sindrom Down (Marţi, 20 martie 2012, 21:51)

    gabriela [anonim]

    Diagnosticul de sindrom Down ingrozeste orice parinte.Cum ati reusit sa treceti,ca mama,peste acest lucru?
    Cum ati descoperit ca poate canta la un instrument?
    • r (Miercuri, 21 martie 2012, 11:56)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui gabriela

      When it was told int he hospital we were shocked, anxious, very worried. I read more about it, friends with people who had children with Down syndrome, going on the itnernet, we connected with the National Down Syndrome. Basically, educating myself. We learned that they can do a lot of things, just in a slow process.

      We read that music is a universal skill that helps improve life.

      As far as instruments is concerned, we tried the violoin because it helps the memory and playing string also helps with the eyes, eye-hand coordination. he learned with regular children and he did very well. it helped with socialization, how to sit in a lesson all the way.

      His brother used to play piano and Sujeet used to listen to the lessons and he came home and play the same thing. And we took him to the same teacher and again, he did well.

      When he started reading music, we put him in school and he did good.

      We read that wind instruments use the cheek muscles. He played and that improved his tone and playing clarinet or trumpet helped tremendously with speech.

      Everything we did with the instruments, we tried to improve the deficiencies.

      We also put him in sports, tae kwan do.

      As your child grows, you know what he likes the most. He also had a performance charisma, he was not scared to play in front of an audience.

      The music and other sport activities gave him self-esteem. He got over the teasing in school when he saw that he can play and be appreciated.
  • down (Marţi, 20 martie 2012, 22:13)

    mihaela [anonim]

    Ce a determinat reusita in viata?
    - o educatie intensa, un tratament special sau un grad de dizabilitate mai mic?
    • r (Miercuri, 21 martie 2012, 11:38)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui mihaela

      Sindoor: It was both, education and acceptance and the community. Acceptance from teachers and schools. The people who taught him accepted.

      Sujeet: I always like to thank parents and my teachers, and my audience.
  • Sujeet e un model pt toti tinerii! (Marţi, 20 martie 2012, 23:22)

    Elena [anonim]

    As vrea sa il intreb pe Sujeet care au fost obstacolele cele mai mari pe care le-a depasit pentru a ajunge un muzician de succes?
    Mentalitatea oamenilor in general, atitudinea colegilor de scoala, sistemul de educatie si sanatate?

    Pe mama lui Sujeet as vrea sa o intreb cum a reactionat familia extinsa (bunici, matusi, unchi etc) atunci ca a aflat ca Sujeet are Sindrom Down - i-a abandonat, i-a sprijinit sau pur si simplu s-a retras - si daca atitudinea initiala s-a schimbat in timp.
    • r (Miercuri, 21 martie 2012, 11:45)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui Elena

      Sujeet: I did have hard times in school, I had been teased by a couple of kids. I don't really like teasing. But I made friends with my audience.

      Sindoor: Our extended family is back home in India, they didn't understand it very well, they didn't take it seriously because they didn't have many knowledge. Me and my husband had to learn everything and explain to them. Sujeet was born in 1981 and at that time the acceptance, the inclusion was not as good as now, there weren't special programmes for people with disabilites. Now there are. We had to learn about it ourselves, me and my husband. The acceptance wasn't that great so we decided to teach him at the same level as his brother.
  • integrare (Miercuri, 21 martie 2012, 7:19)

    codruta [anonim]

    In ce tara te-ai nascut? Ai mers la o scoala de masa (de stat) sau la o scoala speciala? Scolile din tara ta ii ajuta cu adevarat pe cei cu sindrom Down sa se integreze?
    • r (Miercuri, 21 martie 2012, 12:02)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui codruta

      I was born in Albany, New York.

      When he was around 2-3 years old he started to go to a special education programme, it's called infant stimulation, and it lasted a whole day. later he went to public school, pre-school programme, and it was a school with inclusion programme. They did a part of the activities, like math, reading and speech, he did special programmes, and the rest with the rest of the children in a regular school.
  • independent (Miercuri, 21 martie 2012, 7:41)

    iona [anonim]

    Cat de independent poti fi?adica poti locui singur, poti calatori singur?
    • r (Miercuri, 21 martie 2012, 12:04)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui iona

      Yes, I live in a home in Buffalo. I have support staff working with me during the day, sometimes in the evening. I can drive but i have a licensed driver by myself.
  • support (Miercuri, 21 martie 2012, 9:36)

    Vlad [anonim]

    Are you from the USA? Are there good programmes where you live that support families like yours? If so, how did that help Sujeet?
  • education (Miercuri, 21 martie 2012, 9:37)

    Amelie [anonim]

    Question for Sujeet's mother: What kind of education did Sujeet receive and what kind of education do you recommend for children with Down syndrome?
    • r (Miercuri, 21 martie 2012, 12:13)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui Amelie

      Sindoor: I think each country has a different education programme. Childern with DS have certain health problems that need to be taken care of - child milestones. Their speech develops harder and you need to communicate with him, sign language, you need to understand what he likes and what he doesn't.

      In the first 5-7 years you have to concentrate on making him healthy. later they will tell you themselves what they like or not. He wasn't speaking until he was about 3-4 years old and we used the sign language, later he learned the vocabulary and dropped the sign language.
  • felicitari (Miercuri, 21 martie 2012, 9:55)

    Cristi [anonim]

    In primul rand as vrea sa felicit organizatorii pentru aceasta frumoasa initiativa si Hotnews pentru aducerea ei in prim-planul spatiului on-line.

    As vrea sa-l intreb pe invitatul dumneavoastra daca exista pentru el un model de personalitate (publica sau privata) care l-a inspirat in viata sau in cariera?

    va multumesc
    • r (Miercuri, 21 martie 2012, 12:07)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui Cristi

      Yes, Kenny G is one of my idols, the ice-skater Kristi" Yamaguchi and my brother.
  • For Sujeet mother (Miercuri, 21 martie 2012, 10:50)

    dr. Radoi [anonim]

    Thank you for being here in Romania. What do you think about the genetic testing of pregnant mothers (up to months) before birth for Down syndrome? In Romania is already quite a common investigation and if 21 trisomy is detected an abortion is usually the medical recommendation. And hello also for Sujeet.
    • r (Miercuri, 21 martie 2012, 12:17)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui dr. Radoi

      As a rule nowadays, genetic testing is done for other conditions. It's a personal decision. For Down Syndrome, with medical advances and education advances the prognosis is different. If a mother finds out she should read a lot about it. This will give you encouragement. No mother wants to deny her child. Continuing the pregnancy is up to the individual. The test mentally prepares you for what is ahead of you. I didn't know, i didn't do any testing.
  • questions (Miercuri, 21 martie 2012, 11:33)

    Dr. Dre [anonim]

    Hi Sujeet, I'm the proud mother of a young boy with the DS, so it is nice meet you.

    Questions for you:
    1. How are you? How do you feel generally speaking ? :-)

    2. How do you manage to live indepently? Who is helping you and how?

    Questions for your mother:
    1. Where is his father ? :-)
    2. What support therapies did you follow (kineto, logopedics, etc.) and from what to what age ?
    3.I've read that a lot of DS kids have hearing problems - did you had any specific profilatic treatement in order to not get into these kind of problems?

    Thanks and keep up the good work!
    • r (Miercuri, 21 martie 2012, 12:10)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui Dr. Dre

      Sujeet: I am very proud of myself, I am happy because i can bring hope and joy to my audience through my music.

      Sindoor: When he was 7 weeks old we started infant stimulation. He went to the same school, a regulat school with inclusion programmes right until graduation.
      • r (Miercuri, 21 martie 2012, 12:19)

        Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui Sujeet Desai si Sindoor Desai

        His father is right here :). You need a team, siblings with you.
      • r (Miercuri, 21 martie 2012, 12:20)

        Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui Sujeet Desai si Sindoor Desai

        In general the entire metabolism is affected. They get a lot of respiratory problems and hearing problems but again, these problems need to be taken care of before the child is taken to school.
  • separatism (Miercuri, 21 martie 2012, 11:46)

    ana [anonim]

    In primul rand felicitari pentru tot ce a realizat Surjeet, cu siguranta este o persoana peste "medie". Inca o dovada ca omul, indiferent de premisele genetice, care sunt la urma urmei pentru toti diferite, este capabil oricand sa depaseasca asteptarile. "the sky is the limit" se aplica tuturor.
    Nu credeti ca prin faptul ca acesti copii sunt "insemnati" ca atare si separati intr-o categorie aparte, a celor cu "sindrom down" , de fapt au mai mult de suferit si trebuie sa munceasca si mai mult pentru a se afirma comparativ cu ceilati prin simplul fapt ca toata lumea porneste de la premisa ca sunt "handicapati" si nu pot?
    De fapt sindromul down este foarte heterogen, persoanele se pot dezvolta normal, poate unii mai bine decat cei asa-zisi normali. Nu credeti ca acest separatism pe criterii genetice este periculos?
    • r (Miercuri, 21 martie 2012, 12:24)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui ana

      If you separate them, they usually know when they are discriminated. You do work harder to be accepted. Up to this day he does that, they do want acceptance because they are aware they are different, they always have this desire to be accepted. In a way, the discrimination does make them want to work harder.

      Sujeet's father: you cannot change a label, labelling is going to happen, but if you raise the awareness things are going to change.
  • Muzica (Miercuri, 21 martie 2012, 12:00)

    Ioana [anonim]

    La ce varsta ai inceput sa inveti sa canti si care a fost primul instrument? De cat de mult exercitiu a fost nevoie? Mai mult decat in cazul unui copil fara sindrom Down?
    • r (Miercuri, 21 martie 2012, 12:28)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui Ioana

      I started at age 9, i did violin and piano. Around 13 clarinet, and three ago i did saxophone, 5 years ago drums, a few months i started playing trumpet, i got it for christmas. I taught myself drums and saxophone. I took classed only for violin, piano and clarinet.
  • Intrebarea minune (Miercuri, 21 martie 2012, 12:27)

    Minune [anonim]

    Si pentru Sujeet si pt. doamna dr. Deesai. Daca ati prinde pestisorul de aur si ati putea fiecare sa-i cereti sa va implineasca o dorinta, sa faca o minune, ce minune i-ati cere?
    • r (Miercuri, 21 martie 2012, 12:31)

      Sujeet Desai si Sindoor Desai [hotnews.ro] i-a raspuns lui Minune

      Sujeet: If there was one wish, I would like to keep performing and play music. I would also like a cool car, the from Night Rider.
  • culture differences (Miercuri, 21 martie 2012, 12:44)

    Cristian [anonim]

    How many countries have you visited in your activity of promoting DS awareness? Did you notice a difference in tolerance and acceptance from one culture to another?
  • discrimination (Miercuri, 21 martie 2012, 12:54)

    ana [anonim]

    I admire what you are doing. But I thing ALL people are different, and people with trisomy21 are not more different . You cannot be more different than different, and Surjeet is a good example that everyone can do the best of himself, regardless of geneticst. We all have to fight with our "flaws" some are better equiped than others but everyone has his own "handicap" compared to others. I think that not believing everything former doctors said about those kids and encouraging them to integrate and not separate will do wonders.
  • is there a handicap? (Miercuri, 21 martie 2012, 13:29)

    ana [anonim]

    I appologise for writing your name wrong before.
    But, now, looking at what you achieved, do you consider yourself as a person with a disability? if yes why? you can obviously do more than many others.


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