Posted on 3 Comments

BlogDay 2007

U poslednje vreme, nekih godinu ili malo više, pokušala sam da se malo distanciram od svakodnevnog pretraživanja net-a i čitanja raznih tekstova na temu “posebnih potreba”. Pre nekog vremena, kontaktirala me je jedna baka, zabrinuta za zdravlje svoje male unuke, sinoć dobijem mail od devojke koja je sadržaj sa bloga iskoristila za diplomski rad na Faklutetu Političkih nauka, danas sam sa taksistom, komentarišući lokaciju stanovanja i vrtića takođe razgovarala o ovoj temi, i on je imao svoje viđenje. Ovo me je sve potaklo da vam svima preporučim neke blogove koji nisu novi, ali sam sigurna da ih niko od vas koji mene čitate nije nikad video. Ne znam ni jedan blog iz Srbije koji se bavi istom temom, znam dva-tri iz Hrvatske i jedan iz BIH, no ovog puta ću vam preporučiti one na koje sam ja prvo naišla, svi su naravno, na engleskom jeziku.

1. Grupni blog, jako dobra ideja, žao mi je što u poslednje vreme nema mnogo postova

Postcards from Holland is a group blog for families of children with chronic or life-threatening illnesses, or any physical or mental disability, and those that have lost children.
It was conceived as a creative and therapeutic outlet for parents to express their thoughts on living a family life different than the one we all envisioned. Writing is a wonderful way of working your way through the challenges of the medically-obsessed or therapy-driven life, as well as celebrating the successes.
Title inspired by Emily Perl Kingsley.

2. Ovaj je blog nekako najsličniji mom, i zaista ga mnooogo volim.

A condition in which onlookers and people in the community tell parents how terrible life must be raising a physically challenged child. This condition manifests itself through pity and audible sighing of those around you. Terrible Palsy can be deceiving because you can be asymptomatic for weeks, months, or even years, and then just when you and your family are feeling really good about your child, it can present itself in the form of a condescending pat on the head or a blessing from an anonymous busybody. Best known treatment is to carry a list of snappy comebacks in your pocket or a large bag of peanut M & Ms.Sometimes, your worst fears – when realised – are not so bad after all. Life changes, but not always in a negative way. This blog is about a family coming to terms with having a child with a physical disability and the journey along the way . . .

3. Izuzetan mladić, jedan pogled iznutra, meni je to vrlo vredno.

Growing up with Disability These are my reflections on my interview project. I am recording the stories of people living with disabilities. Personal, real stories – be they humorous, sad, angry, fun, or … whatever!

I am 21 years old and am taking a year away from college to pursue this project. I like sports, music, travel, and conversation. And, I have cerebral palsy. I believe society often underestimates the complexity of living with a disability – the joys, the challenges, the ordinary, and the extraordinary.

4. Božanstvena inspirativna priča, puna sjajnih saveta kako da živite dan za danom.

Special Needs Mom
When Zoe was just a baby, we sought the opinion of the professionals involved in her care. Asking her physicians and therapists “ What are your expectations? Will she ever walk, or talk? They were the experts, back then, and there was only their opinion.

And so we held her, nurtured her, worked with her, cried with her, fought for her and protected her. She has grown into a happy, three-year old little girl. And now, I believe, it is the expectations that we,her parents have of her- that will define her. We have become the experts. We can empower and strengthen her, by helping her develop her capabilities. By expecting her to try, before she determines she is unable to accomplish something. By expecting her to practice, before she determines she cannot learn a new task. By expecting her to pursue her interests, experience new things and develop her abilities and talents so that she will live a passion filled life.

5. Ova me devojčica podseća na Vanjinu drugaricu iz vrtića, čija je majka, negde, moj real life idol.

Lovely and Amazing
This is the story of a life less ordinary… a story of my journey with Miss Emma Jayne and the story of our evolution as we walk the road less traveled
Emma was born with Trisomy 21, also known as Down syndrome. As with all children the future is hers to make and her potential is infinite.
Emma has Down syndrome, Down syndrome doesn’t have her.

Posted on 9 Comments

Spavanje, nespavanje, kako ko


Kako ovo moje dete može da izdrži da ne spava toliko, nikako mi nije jasno.

Juče, uzimam je ja iz vrtića, i kaže mi defektolog da je spavala… Uh, kažem ja, onda znači do 12 nema spavanja. Zamolim je da je ne stavlja, ili baš ako zaspi, da je budi posle 30 minuta.

Uveče, naravno, spavanje nemamo u planu, gledanje TV-a i posle skakanje u krevetu. Zaspala sinoć oko 23h45. Buđenje jutros u 7. Vrtić. Nije spavala, i evo sad je zaspala u 23h00.

Što je mnogo, mnogo je. A pritom ceo dan samo đipa, ne prestaje. Gde pronalazi toliku snagu, ne znam…

A pre neko veče, morala sam krevetac da doguram u dnevnu sobu. To je ovako izgledalo.

Šta ima na TV-u? Ček, a na kompu, s kim to pričaš?

Konačno je zaspala gledajući tv, ali prvo se vrtela, sve okolo razgledala, totalno zbunjena, ne znajući kako u krevetu, a u dnevnoj sobi. A tek kad se ujutru probudila! To je tek bio totalni zbun…

Fotke su naravno sa fon-a, još čekamo FA…

Posted on 4 Comments

I Am The Child

author unknown

I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of.
I see that as well.

I am aware of much …
whether you are happy or sad or fearful, patient or
impatient, full of love and desire, or if you are just
doing your duty by me. I marvel at your frustration,
knowing mine to be far greater, for I cannot express
myself or my needs as you do.

You cannot conceive my isolation,
so complete it is at times.
I do not gift you with clever conversation,
cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well being, sharing my needs,
or comments about the world about me.
I do not give you rewards as defined by the world’s standards,
great strides in development that you can credit yourself;
I do not give you understanding as you know it.

What I give you is so much more valuable…
I give you instead opportunities.
Opportunities to discover the
depth of your character, not mine;
the depth of your love, your commitment,
your patience, your abilities;
the opportunity to explore your spirit
more deeply than you imagined possible.
I drive you further than you would ever go on your own,
working harder, seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.
I want the toys on the shelf,
I need to go to the bathroom,
oh I’ve dropped my fork again.

I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs,
your ability to do for yourself.
Sometimes people appear not to notice me;
I always notice them.
I feel not so much envy as desire,
desire to stand upright, to put one foot in front of the other,
to be independent.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don’t learn easily,
if you judge me by the world’s measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are
with the strifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom
to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher.
If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is
and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.

Podsetila me na ovu poemu Moošema svojim postom o “Giving Tree“, o davanju i uzimanju (mada bih ja radije rekla primanju).

Ako se sećate, pred Novu godinu, “naše” obdanište organizovalo je manifestaciju “Ulica Darovanja“, da decu naučimo da je nekima naše darovanje potrebno.

I naravno da to darovanje nema potrebe da bude materijalno, darujte im svoje vreme, pažnju, pozdrav, razgovor, igru…

Posted on 5 Comments

The Special Mother

Našla sam ovo jednom davno negde na net-u, sad prebiram po kompu i nađoh. Da se ne izgubi.

The Special Mother, by Erma Brombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”

“Forrest, Marjorie; daughter. Patron saint, Cecelia.”

“Rutledge, Carrie; twins. Patron saint, Matthew.”

Finally He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness.” The angel gasps – “selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word'”. She will never consider a “step” ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle, and will know it!”

“I will permit her to see clearly the things I see… ignorance, cruelty, prejudice…. and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.

“And what about her Patron saint?” asks the angel, his pen poised in mid-air.

God smiles, “A mirror will suffice.”

Posted on 6 Comments

Nisu Mars i Mesec, hoax je

Pre nekoliko dana od jedne veoma drage osobe, koja uzgred zna da ja baš volim astronomiju, dobila sam mail ovakve sadržine

27.08.2007., u 00.30 planet Mars bit će najosvjetljeniji planet na zvjezdanom nebu.

Bit će velik poput punog mjeseca. Mars će tada biti udaljen 34,65 milijuna milja od Zemlje.
Golim okom će se činiti da Zemlja ima dva Mjeseca.
Slijedeća prilika za vidjeti takav prizor predviđa se 2287. godine.

Stoga podijelite ovu informaciju s prijateljima jer nitko živ neće taj prizor vidjeti dvaput …

Obzirom da pomenuta gospođica nije neko ko ima običaj da tek tako prosleđuje svakakve poruke, bilo mi je veoma interesantno, pa sam rešila da proverim, može li se negde iz Beogradu organizovano posmatrati ova pojava. I iznenadih se. Nema nikakve retke i neponovljive astronomske pojave, u pitanju je česta internet pojava – hoax.

(sad se setih jednog kolege koji forwardere deli u neke kategorije:
– oni koji sve forwarduju svima, uvek;
– oni koji nekima forwarduju nešto, ponekad
i sve potkategorije između, ima tri promenljive, provalili ste, jel da: šta, kome i koliko često)

E sad, što ja ovo sve pišem?

Ma ne bih ga ni pomenula, da ne bih morala da objašnjavam kako sam se “po stoti put” upecala na ovakve “proverene” informacije, nego me mnoštvo poseta blogu, sa ključnim rečima koje se sve odnose na ovu “pojavu” na to nateraše.

Dakle, ako ste se, kao ja, primili da je ovo istina, samo da vam kažem, NIJE, zeznuli ste se.

Pogledajte ovde (na engleskom) ili ovde (na srpskom).

Posted on 7 Comments


Ma, ne, nisam joj još kupila krevet, nego smo imali noćnu dogodovštinu.

Juče nije u vrtiću spavala, i ja se ponadam da će ranije zaspati, ranije od sad već uobičajenih 23h30. I zaista, već u 21h45 spavala je. Pohvalih se sinoć, al ne vredi, nema spavanja… Vrućina je valjda noću, pa se probudila.

Četiri je sata ujutru, peva nešto, brrrrrrrrr brrrrrrrrrrrrrrr brrrrrrrrrr.

Pomislim žedna je, ustanem, donesem vodu, popije dva-tri gutljaja i gura mi čašu.

– OK, ajde sad lezi, spavanje, mora ujutru da se ide u vrtić.

Legne ona “kao”, to ležanje potrajalo celih 8 ms (milisekundi, ako neko nije shvatio) i onda opet skakanje po krevetu, pevanje, pljeskanje rukama, ustajanje… Sedela ja malo pored nje, dok se malo izigrala, i vraćam se u krevet, koji je u drugoj sobi.

Čujem je ja, nije još zaspala, još uvek priča nešto, ali polako se smiruje. Sve pomislim sad će zaspati, već je prošlo 5.

Kad, čujem je da trapka, izašla iz kreveca, i došla kod mene, htela bi da gleda TV. Ma ajde, kakav TV po mrklom mraku, sad se spava.

– Popni se. – kažem joj ja.

Penje se kod mene u krevet, legne, i posle 5 minuta, već spava čvrstim snom.

I posle samo nek mi neko kaže da ona ne razume, ili da ne zna šta hoće. Zna ona sve, samo je mi ostali malo teže razumemo.

Mama, hoću kod tebe u krevet!

Posted on 9 Comments

Kinez sa “našim” imenom

Čitam malopre kod Eniac-a post o Kinezima, i setih se jedne pričice, što bi jedan moj prijatelj rekao “istinite anegdote” (k’o da anegdote mogu biti drugačije osim istinite).

Prvo moram malčice background-a, da bi stvari bile jasnije.

Imam tetku u Parizu, koja je radila u jednom velikom institutu za naftu kao prevodilac. Pojma nemam otkud, tek, studirala je ona “pod stare dane” kineski jezik. Boravila u Kini mnogo puta, na poslu se sretala sa kineskim stručnjacima za naftu, i bila u njihovom društvu vrlo omiljena.

Jednom prilikom, pre 15-tak godina, neki od njenih prijatelja Kineza su očekivali prinovu, i od nje zatražili da “krsti” dete, tj da mu dâ ime, ali tako da i na Srpskom ima neko značenje, a da “zvuči” kineski. Iz potpuno bezazlene priče, koja je u prvom momentu bila skoro kao “zezanje”, tek u ulozi “kuma” našao se moj brat od ujaka.

Elem, ideja je njegova bila da, ako je devojčica, dobije ime Sunčica, a ako je dečak, Sunčan.

Rodio se dečak, i dobio ime Sunčan. Oni su bili oduševljeni što je ime sa tako pozitivnim značenjem, a i zaista je njima Sun Čan zvučalo kineski. Ne znam da li i na kineskom ima neko značenje, tek uglavnom, mali Kinez dobi to ime.

Posted on 9 Comments


Ma ne, nigde ja ne idem, ne brinite se, nego ova reč se Vanji jako dopada. Pojma nemam što baš ta.

Uveče pred spavanje, smirujemo atmosferu skakanja igrajući se rečima.

– Dobar dan.

Gleda me u oči sa polu-smeškom, očekujući nastavak. Tu obično ide onaj kišobran, sećate se. Sinoć, ja malo rešim da promenim repertoar, pa da izređam sve reči tipa dobro jutro, dobar dan, laku noć, doviđenja.

E kad rekoh doviđenja, tu kreće zabava. Ta je reč jako smešna, valjda ja tako izgovaram taj glas đ, nekako mekano, i ona se oduševi, i počne da se cereka.

Juče je, čini mi se, probala da imitiradobar dan” sa “da-da-da“, pa kad ja kao odgovorim na to njeno da-da-da sa “doviđenja” ona se iskida od smeha. Ni jedna druga reč ne izaziva toliku poplavu oduševljenja.

Večeras drugačija situacija. Neće ono dobar dan da proba da ponovi, zna da posle toga dolazi “ona interesantna reč”, i lepo me gleda pravo u oči, očekujući šta ću ja sledeće reći. Ja prvo malo oklevam, pokušavam da je ipak nagovorim da “ponovi” to dobar dan, ali nema šanse, samo se smeška, i čeka mene. Ok, nastavljam ja sa dobro jutro, ništa, laku noć, i dalje ništa. Doviđenja. E pa to je čekala, naravno. Kaže mi di-di-di-di, i prasne u smeh.

I tako se nas dve ispozdravljasmo jedno 50-60 puta, bez preterivanja.

A fotoaparat mi nije tu, pa nisam uspela ni klip da snimim, da vam svima pokažem. Tj. jesam, telefonom, ali nemam čime da prebacim na komp, nisam dovoljno tehnički opremljena, ni gajtan, a ni plavi zubić nemam. Rešićemo i to, uskoro valjda, ajde mama, idi časti se.

Posted on 9 Comments

Daj mama sok

Popodne jedemo breskvu. Mama mi iseče, stavi u činijicu pa viljuškom bockamo parčiće, jedno po jedno. I sve ja pojedem. Mora neki crtani da bude uz to, da bih sve pojela, ali nisam to htela da vam ispričam.

Kad pojedem sve, u činijici ostane soka, pa ja i to popijem. Jedan mali gutljaj, nema veze, znam ja da tu ima soka.

Ali danas, mama kupila neke bezveze breskve, prvo mi je bila kisela, jedva sam je pojela. I sve bih ja to pregurala, nego nikako ne mogu da joj oprostim što soka u činijici nije bilo. Kakve su to breskve bez soka.

Daj sok bre mama!