O intalnire de nota…13!

Odata cu nasterea Ecaterinei am invatat cat este de important un grup de suport, cat de mult conteaza sa cunosti oameni care vâslesc intr-o barca ca si a ta, pe niste ape la fel, cu nori si insoriri asemanatoare. Am invatat asta intrand intr-un grup de suport on line al parintilor cu copii cu T13 si T18 si alte trisomii rare. Mi-am dorit, atunci, sa existe asa ceva si in Romania. Blogul acesta s-a infiripat din aceasta dorinta.

Din când in când am ajuns sa cunoastem si fata in fata copii despre care aflasem virtual, iar povestea unora dintre ei o gasiti chiar aici pe blog. Când avea Cati 13 luni am mers in UK pentru evaluarea initiala a programului NACD si acolo o întâlneam pe Natalia, o domnisoara minunata cu T13 partiala, care anul acesta implineste 12 ani. Vara trecuta o cunoasteam pe Teo, fetita cu T18 si cu cei mai frumosi ochi albastri din lume, care pe 5 aprilie a implinit 4 ani (La multi ani, Teodora!!!) si pe Lizuca cea dulce (o fetita cu T13 partiala, cu jumatate de an mai mare decat Cati).

Virtual am aflat despre Phillip cu T9 in mozaic (familia fiind de origine romana dar stabiliti in SUA) si despre un alt baietel cu T9 partiala, din tara noastra.

Incet, incet, începem sa aflam unii despre altii si sa ne ajutam reciproc. Fiecare informatie noua despre un aliment care poate ajuta, un medicament sau un supliment mai bun ce poate fi de folos, o terapie noua sau un specialist priceput, fiecare dintre acestea conteaza, mai ales in  tara noastra unde sistemul informativ si de sprijin nu prea exista.

Ieri, pe 19 aprilie, am avut bucuria enorma de a ne intalni trei familii cu 3 fetite speciale- Natalia, Lizuca si Cati. A fost, pentru mine, cea mai frumoasa zi din primavara asta, adevarata sarbatoare inainte de Sarbatoare.


A contat asa de mult faptul ca ne intelegem unii pe altii, ca ne putem si plange fara sa ne simtim compatimiti aiurea, ca am putut sa ma bucur de progresele fetitelor ca si cum toate ar fi ale mele, stiind ca si celelate mamici simt la fel. Mi s-a topit inima când am vazut ce afectuoasa este Natalia si cat de mult iubeste copiii mici, cat de frumos a evoluat in ultimii doi ani de când ne-am vazut ultima oara. Cat despre pupicii pe care i-am primit de la Lizuca, sunt nepretuiti!


Cati a fost mai morocanoasa, cred ca era foarte obosita si cu un inceput de raceala. Dar atat de frumos au reactionat fetitele impreuna (Natalia le pupacea pe cele mici, Lizi si Cati s-au certat pentru iPad ca noi toddlers tipici), Lizi mergea sustinuta de mobila, Cati si-a regasit acvariul imprumutat si a fost foarte bucuroasa 🙂


Am avut o masa delicioasa (multumim din sulfet, Andreea!) si un tort excelent cu capsuni si ciocolata, facut de mainile maiestre ale Oanei.

Pentru aceia dintre voi care poate ne citesc din umbra, sau care cunoasteti o familie care se confrunta cu o trisomie rara, va rugam sa ne contactati. Impreuna, drumul poate deveni mai usor, mai frumos, bucuriile se inmultesc cu progresele adunate ale fiecarui copil, de care ne bucuram toti. Chiar daca ajutorul ce il putem da e doar o vorba buna si o informatie, si aceasta conteaza.


Darul timpului: doi ani cu Cati

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Bucuria accelereaza istoria.

Au trecut doi ani de cand s-a nascut Cati, si nu imi dau seama cand.  Si ca sa facem Pamantul sa se invarta un pic mai repede azi, vom numara bucuriile.

  • Catidoiani
  • Cati a intrat in programul NACD anul acesta
  • Ne da pupici si isi arata afectiunea
  • A invatat sa se tarasca
  • A spus „mama”
  • Prinde in pensa
  • Intelege limbajul vorbit
  • Raspunde la comenzi
  • Recunoaste imagini


  • E rezistenta si rezilienta (a trecut cu bine peste mai multe valuri de imbolnaviri, care au inclus infectii urinare, pneumonie, varicela, otita, conjunctivita si muuulte raceli)
  • E delicios de zambicioasa 🙂
  • E foarte muncitoare si ambitioasa
  • Isi face cunoscut punctul de vedere- daca nu ii convine ceva- vei sti!
  • Adora jucariile muzicale si luminoase, si spunem din nou multumesc tuturor celor ce i-au daruit, de-a lungul timpului, jucarii
  • Ii place sa bata apa cu palmele, asa ca la baita face in jur…

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Copiii cu trisomii recomanda: Exersaucer

When Cati was about 3 months old, I was introduced in the trisomy 13 community, that I found via Living with Trisomy 13 site.  I joined the yahoo group, the Facebook groups, read all stories on every site and blog I could find. I payed attention to what other people found helpful for the development and comfort of their children, and if I could purchase that item, I would.

Trisomy mommies suggested the Bumbo seat and the exersaucer as two important „helpers”, so I bought both (had them shipped from the UK, as you cannot find a Bumbo seat in Romania). Well, it turned out I didn’t use the Bumbo seat too much- Cati had poor head control and would arch backwards, making the seat very unsafe for her.  We didn’t use the Exersaucer too much, either, the first year we had it. I didn’t force Cati on the sitting position because the muscles of her back were not ready to support her backbone, and I didn’t want to risk scoliosis. For us, it proved to be the right decision at that time.

A couple of months ago I met (on line) Mr. Sam Sansalone, Katya’s father. Katya is a wonderful young lady with full Trisomy 13, and here mere picture is able to brighten my day in the most complete way. She is pure joy, and she is doing pretty well. I asked Sam to give me some tips for Cati’s development, as Katya could walk unassisted and seemed well developed for a full T13 diagnosis.


Sam mentioned the Exersaucer. I’ll quote his entire answer, hoping it will prove as useful for you, as it was for me:

To answer your question, Katya was 5 years old when she started being completely independent in her walking (i.e., no longer with any walker or other assistive device). There will be lots of suggestions, tips, and knowledge I can share that may help your daughter learn to walk as best as possible and very likely completely independently within a few years. It will be lots of work and time on your part, but very much worth it.

I had to innovate new ways of helping a child like Katya learn to walk because the traditional, usual approaches have not proved to work well with T13 kids (largely due to their very ‘slow’ way of learning and responding neuromotor-wise). The high-profile healthcare facility that helped during Katya’s walker-training stage was initially very resistant to some of my key ideas because they considered them bordering on ‘unsafe’ as they made it more likely for the child to lose control in the walker. But these new techniques and approaches were not unsafe – they simply required more diligent supervision by the parent (really diligent supervision).  Eventually this facility (Holland Bloorview Kids Rehabilitation Hospital) accepted and then even lauded the principles and techniques I had proposed and implemented for my daughter.  They even invited me after that to be on a development team for a new walker they were developing. So many advantages for various people could result from the hard work you do as a parent on behalf of your special-needs child and the community.


And have you ever heard of the Exersaucer? It’s an infant sitting-up chair that has a circular shelf/table all around the circumference, a freely-rotating seat, and collapsible ‘tripod’ feet that allow it to convert to a standing rocker. I am guessing if you can get one of those it will be a boon to Cati’s upright sitting. And, you’re right – that is a very important step towards walking and other upright mobility moves. There appear to be many different models now. I think it’s important to get one that has the rocker bottom option. Basically, the rocking feature is one of the ways that Katya managed to learn the concept and dynamics of left/right weight transfer, back and forth. That is an integral concept and motion for walking. When we walk, the biomechanics of it is that we must swing with momentum from side-to-side as we take steps in order to transfer sufficient weight+momentum to the other side while taking each step –i.e., so we can take each step without falling to the side we are stepping from. We have to ‘throw’ our weight directionally to the next-step’s side and with a great deal of precision and finesse. It will take untold thousands upon innumerable thousands of iterations of this dynamic for a child like ours to finally ‘get it’. The Exersaucer is one of the key methods I used to formulate that part of Katya’s „neural network” for walking capability. There is much more, of course, but in Katya’s case this was a vital, major part and step. I highly recommend the Exersaucer.

DVC00093_2Here is the oppinion of a Down Syndrome parent on the Exersaucer. Here is the oppinion of an Occupational Therapist/mom about the same issue.

I asked Bob Doman about the use of the Exersaucer and he allowed Cati to use it a couple of times a day, but no more that 10-15 minutes once.

In Cati’s case, the Exersaucer had a double benefit: on one hand, it helped Cati with head control and upper body control, as well as taught her to push her feet, and so she started supporting her weight on her feet (a thing she didn’t do before). On the other hand, Cati learned pretty fast how to manipulate the toys on the Exersaucer’s table- and there are lots of different ones: to push buttons, turn pages, lift flaps, spin, pull. Although we didn’t use it for the first whole year, it proved very useful in the end. We bought ours second hand, and payed less than half of what we’d have payed for a new one.

exersaucer(In curand, versiunea in limba romana).

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Unele dintre cele mai proaste sfaturi pe care le puteti primi ca mamici „nou-nascute” sunt cele de tipul „Nu-l lua in brate cand plange, ca se invata un rasfatat”, „Lasa-l sa planga pana adoarme”, „Nu-l legana, ca se invata asa”.
De fapt, bine faceau strabunicii nostri ca-si puneau pruncul in copaie sau in leganut- miscarile ritmice de leganare nu numai calmeaza bebelusul, ci sunt importante pentru dezvoltarea sistemului vestibular.

Sistemul vestibular este localizat in urechea interna. El raspunde fata de miscare si gravitatie si este asadar responsabil de simtul nostru de echilibru, coordonare si miscari ale ochilor. Terapia poate include atarnarea cu capul in jos, balansoare, leagane, invartiri, rostogoliri, tumbe, roata, dansul. Toate aceste activitati implica miscarea capului in diferite moduri care stimuleaza sistemul vestibular. Terapeutul  va observa copilul cu atentie, asigurandu-se ca miscarea nu il suprastimuleaza. (sursa- Wikipedia).

In cadrul programului de terapie al Ecaterinei, ea a…

Vezi articolul original 277 de cuvinte mai mult

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Unul din visele mele de adolescenta era sa ajut copiii sa mearga la scoala. In naivitatea mea, credeam ca asta inseamna sa strang multe creioane colorate, caiete si eventual sa dau meditatii de engleza in vreun sat. Apoi am descoperit educatia timpurie care, odata cu nasterea Baietelului de Argint, a devenit o pasiune. Blogul acesta a inceput din dorinta de a inspira mamicile de toddleri, ca mine, sa inceapa educatia de acasa cu copiii lor mici. Este si acesta un mod de a „ajuta copii sa mearga la scoala”. Sunt convinsa ca pustii vostri, a celor ce cititi blogul si puneti in practica acasa mai mult decat pot scrie eu aici, se vor descurca de minune in clasa I-a si mai taziu.

Odata cu nasterea Ecaterinei, am deschis usa lumii copiilor cu nevoi speciale, si am inteles nevoia lor acuta de interventie timpurie in primii ani de viata si…

Vezi articolul original 964 de cuvinte mai mult

Caiet pentru casa mea

In ultimele 3 luni progresele Catiushei in ceea ce priveste motricitatea fina au fost evidente.

De cand s-a nascut, a avut o hipotonie pronuntata la manute, de aceea atingerea ei a fost intotdeauna de matase si catifea, mai ales ca are o piele deosebit de fina.

Well, not anymore!

Acum prinde, trage, apasa, loveste, apuca, pisca, zgarie cu mult mai multa putere. A inceput sa foloseasca opozitia degetului mare cu celelate degete, si mi se pare ca incepe sa prinda si in pensa- ceea ce este excelent pentru un copil cu diagnosticul ei (si foarte devreme, as putea spune).

Pentru ca imbolnavirile din luna asta (raceala cu tuse foarte puternica si ulterior pneumonie 😦  ) nu ne-au dat voie sa facem prea multe exercitii la podea, am facut totusi multe exercitii pentru partea de dezvoltare cognitiva si motricitate fina. Iata cateva dintre jocurile noastre din aceasta perioada:

Cutia cu esarfe


Vezi articolul original 441 de cuvinte mai mult