Arhive

The Pajama Project

Cati e o fetita tare binecuvantata. Isi face prieteni in toata lumea si raspandeste dragoste peste tot.

In America, bunaoara, are prieteni multi copii cu trisomii rare. Doi dintre ei- Phillip (PT9) si Kingston James (FT13) i-au trimis pijamale. Pijamale pufoase de fetita (dar si de baietei pentru fratior, asa ca suntem „acoperiti” si la capitolul acesta), din polar, numai bune pentru stat pe podea si exersat in zile ploioase sau geroase:

coolpajamas1Noi ne-am simtit tare binecuvantati prin aceste pijamalute deosebite, care se gasesc cu mare greutate in Romania.

De aceea, ele vor face parte din „fondul special de pijamale”, care vor trece de la Cati la alte fetite si baietei cu trisomii rare sau anomalii cromozomiale rare. Noi avem deja 3 mici prietene pe lista noastra, insa m-as bucura mult sa-mi dati de stire daca mai exista copii in Romania cu T13, T18 sau alte trisomii rare, sa le spuneti despre proiectul pijamalelor si despre grupul de suport pe care incercam sa il construim astfel in tara noastra.

Multumim!

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.

DVC00089

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.

DVC00091

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).

Copiii cu trisomii recomanda: Ginko Biloba si ulei de cocos

I personally do not fancy neurotonic medication, even if it as been proved helpful in some cases. It is a custom in Romania for neurologists to prescribe medication that would stimulate the brain, but we didn’t try it with Cati.

I would rather attempt the natural approach, if I were to choose one. I had previously heard about the benefits of Ginko Biloba on Down syndrome children, and I wanted to give it a try with Cati, yet I was always postponing it.

Summer

Summer

So, when I heard Abir , Summer’s mom, talking about Ginko Biloba and coconut oil added to her daughter’s diet with amazing results, I was more than willing to try it with Cati, too. Summer is a beautiful little girl, with the same diagnosis as Cati- full trisomy 13.

„Summer, our daughter FT13 had never babbled or smiled for us before, and she always seemed unaware of us. About a month plus ago I started Summer on Ginkgo Biloba, and within a week she started the babble with huge big smiles, and much more aware of us around her.”

I added Ginko Biloba tea to Cati’s diet only this week, so I couldn’t tell you first hand about the benefits, but we started her on coconut oil about 3 weeks ago, and our happy, alert and hard working Cati seems to be happier and more alert, learns better and pays more attention and babbles more (which is a new thing with her, she was always so silent). With Cati’s poor diet, the addition of coconut oil couldn’t have been anything but beneficial, but what convinced me to do it was this video:

Here is another video on coconut oil and Alzheimer’s, and a very informative article about coconut oil and recipes.

Eu personal nu agreez medicatia neurotonica, chiar daca s-a dovedit a fi eficace in unele cazuri. Este un obicei al neurologilor din Romania sa prescrie neuro-stimulatoare, ne-au fost oferite si noua, insa nu le-am incercat pe Cati. Daca ar fi sa aleg, as opta mai degraba pentru suplimentele naturale. Citisem despre protocolul de medicatie pentru copiii cu Sindrom Down, care incepea cu doze destul de mari de Ginko Biloba, si mi-as fi dorit sa incerc cu Cati. Cu toate acestea, abia saptamana trecuta am inceput sa ii dau ceai de Ginko Biloba, deci prea multe despre beneficiile pe termen lung nu va pot spune.

Cand Abir, mama unei fetite foarte frumoase cu T13, a povestit despre rezultatele pe care le-a vazut dupa ce a introdus in alimentatia lui Summer Ginko Biloba si ulei de cocos, am decis ca pot face si eu asta pentru fetita mea.

Summer, fiica noastra cu T13 plina, nu gangurise niciodata si nu ne zambea direct, parand ca nu e constienta de prezenta noastra. Cu aproape o luna in urma am inceput sa ii dau lui Summer Ginko Biloba, si in mai putin de o saptamana a inceput sa gangureasca si sa ne zambeasca larg, mult mai prezenta si mai constienta ca suntem in jurul ei.

De cand am inceput si noi uleiul de cocos (pe care i-l pun in lapte, cate o mini-lingurita, ca de bebelus, de 2-3 ori pe zi), Cati este si mai alerta, iar schimbarea majora mi se pare mie cea care tine de vocalizare- gangureste mai mult, scoate sunete noi, daca si-ar coordona miscarile gurii cu sunetele ar putea spune „ma-ma”.

Aveti mai sus doua video-uri despre efectul uleiului de cocos in boala Alzheimer, care pe mine m-au convins sa il incerc cu Cati.

Noi il folosim pe acesta: Ulei de cocos (cu acest link puteti vedea si uleiul pe care il folosim noi, fabricat in Germania, si magazinul on line de unde l-am comandat eu).

Programul nostru de dezvoltare neuromotorie

Programul de terapie in care e inscrisa Cati (si de care noi, dupa 3 luni, suntem multumiti, pentru ca am vazut progrese la ea) este un program de dezvoltare neuromotorie complex. Eu nu sunt terapeut, si nu pretind ca sugestiile mele sa fie luate „litera de lege”, ba chiar va recomand sa intrebati pediatrul cu privire la anumite exercitii daca va ridica semne de intrebare. Dar NACD nu este accesibil oricui (o data din motive financiare, si a doua oara pentru ca cere o cunoastere destul de precisa a limbii engleze), si anumite exercitii am impresia ca ar fi oricum recomandate in cadrul programului. Din aceasta cauza, cu motivatia de a veni in ajutorul parintilor copiilor cu nevoi speciale, voi face o lista cu exercitii utile copiilor cu retard psihomotor. Mai multe articole despre neurodevelopement puteti citi aici.

NACD urmareste dezvoltarea copilului pe 6 planuri- motricitate grosiera, motricitate fina, limbaj, plan auditiv, plan vizual, tactilitate. Sunt 7 etape pe care un copil trebuie sa le parcurga la toate cele 6 domenii, pentru a atinge normalitatea. Pentru a trece de la un nivel la altul Cati face multe exercitii, de 2,4 sau 8 ori pe zi, pret e 1,2, sau 3 minute fiecare- dureaza cam 4 ore un program complet, iar noi am cerut program scurt (!).

Las cateva exemple de exercitii pentru fiecare domeniu de dezvoltare:

1. Motricitate grosiera: la inceputul programului Cati putea sa se rostogoleasca in ambele directii si ridica cumva capul. Acum reuseste sa faca miscari de tarare pe plan inclinat in jos, daca o apucam de maini se ridica singura in fundulet. Reuseste sa se ridice in patru labe, dar nu mentine pozitia, in speta pentru ca nu controleaza bine miscarea capului. Pentru aceste realizari este responsabila si kinetoterapia pe care o facem de cateva ori pe saptamana de la 3 luni (cu pauze de vacanta sau de boala).

Cati are de facut urmatoarele exercitii:

  • Tarare cu ajutor
  • Tarare pe plan inclinat (noi o punem in jos, dar ar trebui in sus- mai lucram la asta- de abia am reusit sa facem planul)- mai multe despre planul inclinat aici si aici.
  • Timp pe podea pe burta, cu ajutorul unui dispozitiv care o impiedica sa se rostogoleasca- un articol despre importanta tararii si a mersului de-a busilea, si un altul despre cum poti sa incurajezi copilul sa se tarasca. Despre importanta statului pe burtica am scris mai pe larg aici.

2. Motricitate fina:

Cati a avut un reflex de prindere foarte slab si manutele foarte hipotone, desi a apucat jucariile destul de devreme deschidea imediat palma si le lasa sa cada. Nu suntem cu totul ok la capitolul asta, insa a invatat sa dea drumul jucariei din mana la comanda (deci controleaza ea miscarea) si o poate tine mai  mult timp in manuta.

Pentru aceasta am facut multe exercitii de prindere si lasare a obiectului din mana, folosind un obiect cilindric, ca un maner de surubelnita. Cate ceva despre asta aici.

3. Limbaj:

Am cautat sa stimulam limbajul receptiv, facand exercitii cu flashcards. Dupa doua luni de exercitii, Cati reuseste sa apuce, la cerere, un obiect din doua aratate in imagini, sa raspunda la comenzi simple de genul „Trage-l pe tata de nas” „Ia-o pe mama de mana”, si a inceput chiar sa bata din palme (uneori, cand e odihnita si pe faza), cand ii cerem sa faca „Bravo”. De asemenea, ii spunem alfabetul de patru ori pe zi, ceva de genul A-albina, B-bunica. etc.- cu pauze ca si cum i-am da timp sa spuna si ea dupa noi. Cateva sfaturi pentru stimularea timpurie a limbajului puteti citi aici.

4. Vizual:

Cati are multe probleme din acest punct de vedere, in primul rand fiziologice: cataracta bilaterala, coloboma, microftalmie- insa zareste, urmareste cu privirea, diferentiaza. Pentru ca isi foloseste mai mult vederea periferica, avem exercitii care sa intareasca muschii ochiului, sa stimuleze vederea maculara si de focalizare (acesta din urma este foarte simplu- video-uri interesante pentru copil, puse pe un ecran mic, de genul telefon- de 8 ori pe zi). Aici puteti gasi cateva exercitii simple pentru imbunatatirea functiei vizuale.

5. Auditiv:

Aici Cati sta cel mai bine, auzul e normal, de aceea nici nu avem exercitii pentru asta.

6. Tactilitate:

Pentru maini si picioare- presiune profunda si stimulare tactila. Mai multe explicatii puteti citi aici.

Pentru fata- stimularea muschilor fetei si a nervilor trigeminali.

Pentru gura- stimulare bucala.

Pentru stimularea vestibulara, leganarea intr-un hamac sau o patura, de doua ori pe zi timp de 2 minute este un bun exercitiu.

Despre un program de terapie Doman puteti citi aici. Cronica unei recuperari prin aceeasi metoda- aici. Informatii interesante despre metoda Doman puteti citi si aici.

Nu toate exercitiile se preteaza la toti copiii si unele pot fi daunatoare daca nu sunt aplicate corect, de aceea sfatul meu este sa apelati la un specialist. Am vrut totusi sa va arat un model de terapie care la noi a dat rezultate. Mai este un baietel in Romania inscris in programul NACD (cu rezultate deosebite in mai putin de un an), si sora lui a explicat cum se poate intra in program aici.

De citit

La pagina 66 puteti citi o poveste extraordinar de frumos spusa, povestea nasterii Angelei. Angela are trisomie 13 plina si are aproape 8 ani.

Aici este un excelent articol care incearca sa schimbe mentalitatea lumii medicale vis-a-vis de copiii cu T13 si T18. Ei sunt copii, nu diagnostice, nu legume, nu cazuri fara speranta. Sunt compatibili cu bucuria, cu viata, cu dragostea.

Aici un studiu privitor la impactul acestor copii asupra famiiliior lor- concluzia a fost ca ei imbogatesc viata celor din jur si o schimba in bine, in cele mai multe cazuri.

Pe a noastra, in mod sigur, Cati a schimbat-o in bine. Datorita ei am crescut, am invatat, ne-am dilatat sufleteste, am inaintat chiar si atunci cand a fost greu de mers inainte, am iubit mai mult si am dat mai mult. Prin Cati am intalnit oameni minunati, ne-am facut noi prieteni buni si am deschis noi usi de cunoastere.

Cati, sper ca vom mai merge impreuna, o buna bucata de pamant, o buna bucata de cer, o buna bucata de luna…