Nu sunt autiști, sunt persoane cu autism! În primul rând sunt persoane, sunt copii doriți și iubiți. Niciun copil nu e o greșeală, este un dar, doar ambalajul diferă la fiecare, trebuie doar privit dincolo de ambalaj.
december 2008
I tell the story of my children, Tudor and Antonia, both diagnosed with “Disorders from the autistic spectrum. Moderate retardation with emphasis on language. Hyperactivity”
It started at the end of 2004, when the news that we were going to be parents brought me and my husband a long expected joy. After a pregnancy without any problems and a normal birth, Tudor was born on 06. 05. 2005, a wanted child, a perfect baby with an Apgar score of 9 / 10. His physical developmentin the first year was according to the graphics, even “jumping” a few months over the average, in terms of those features which are aimed at a few months by a GP. When he was 10 months old, he already started to walk, overflowing of energy, always smiling and willing for company and play.
Since he was one and a half his medical problems have started, meaning “colds” with serious, prolonged forms, that required medical treatment for a long period every time . I had the feeling that he was better, but after two or three days it started again and again. Because of that continuous cough, a gastro-esophagian tide was suspected at a certain moment. We made two endoscopies, almost “live” ,because he didn’t respondto sedatives adequately . On the background of these frequent visits to the family doctor and to the hospital, tests, 5 types of medicines taken at the same time, the constant state of illness, we found an explanation for many of the unique characteristics of his behavior and we all expected them to diminish and finally disappear. In his first year of life he had already had 21 colds. The second year we succeeded in strengthening his immunityand he didn’t have those health problems anymore, but then, in the absence of the usual health problems, the lack of the progress we expected became increasingly obvious .
Looking back I think the disability started around the age of one year and 3 months, but we didn’t realise it then. When he was two we were concerned that he didn’t talk at all. We have been told not to worry, that boys are usually lazier than girls, that he would start talking one day and he would be hard to keep quiet, and so on. We were tempted to believe them, but still we knew that something was wrong, it wasn’t only the talking issue.
For 2 years he did not sleep a whole night. There were nights when he didn’t sleep at all or weeks after weeks when he slept only 4 hours from evening to dawn. I had to swing him in the rocking chair all the time and there was a time when I used the noise made by the hair drier in thebackground, otherwise he screamed dreadfully and woke up all the neighbours.
Till he was 1 year old, his meals were very varied, we gradually introduced new and healthy foods in his menu, then he got to eat only 5 types of food.
In the park he desperately wanted to be around the other children, buthe didn’t know how to play with them properly.
I remember how I blamed myself and tried to understand where I was wrong in his upbringing, because I knew I devoted him my entire time, while I saw other children, whose parents didn’t offer half of the time and care he got from me and still they could do so many things and never had problems of any kind.
In the park I was often told to sit on a bench and relax, to let the child alone and free! The other parents were right and they did so, but their children played nicely in the sand, they came to their parents to drink some juice or eat some snacks, but Tudor was constantly on the move, he was always in danger of falling from somewhere he climbed, he ran towards the street as he saw a truck or something else, he didn’t know to dodge from the swings when older children played on them, and so on.. How could I sit on a bench and relax, when every 15 minutes I saved him from a situation that jeopardized his life so often?
I realized that he was not prepared to go to the nursery when he was 2,when I was supposed to get back to work, after the maternity leave. Therefore, as we wanted to have two children anyway, we decided to have them one after another, so that I could get the maternity leave for the second child and thus to be able to stay with Tudor until his situation is stable and to prepare him for the community.
And so Antonia was born, my beautiful present on the 8th of March 2007 (March 8 is Mother’ Day in Romania). It was a pregnancy without complications, a normal delivery and she got an Apgar score of 9/10.
I mentioned above the reason why we decided to have a second child, as we were sorry to read the reactions of the people towards the mother of the two children in Barlad, Antonia and Rares, where they asked her why she wanted a second child, when she knew the problems she had with the first one and accused her of irresponsibility. As in their case, when we decided to have a second child, we didn’t know Tudor’s diagnosis, there was an inkling that something was wrong, but we didn’t think of autism at all. I am not trying to defend myself in front of anyone. Even if I knew of the diagnosis of the first child, no one can judge mefor wanting a second child.
Quite the contrary, when you have an unfortunate child, you want to have a healthy one, too, who could prove itself a blessing for the other one, through its presence and through the bounds that develop between them, and when you won’t be able to help the unfortunate one, you know that he is not left alone, but he has a healthy sister or brother to support him.”Would I have had the courage to give birth to Antonia if I had known about Tudor’s problems?”,you might ask. I wouldn’t know what to tell you. The fact that we didn’t know then what hard times were coming was her chance to live.
When Tudor was 2 and a half we started the occupational therapy,2 sessions per week, teaching the child to sit at the work table, to listen to the therapist, to work on command, and so on… and we planned to start the logopedia session after a while. I was still reading and looking for information about his behaviour, but I avoided the forum about autism on purpose. I was in the denial phase. Meanwhile we used homeopathic treatment, which helped him to be more peaceful and calm, solving the sleep and immunity problems .
At the beginning of summer 2008 I coped with reality. In a month time I had all the official documents, necessary for the certificate of disability. We went to the Faenza House in Timisoara for an assessment made by a multidisciplinary team, then I enrolled him in a kindergarten group with autistic children exclusively. Now he is making progress in kindergarten. The advantage isthat he is secure, loved, cared for, being only 4 children in the group, the therapy follows a Belgian scheme, and most importantly, once in two days he is taken to mass groups, thus being able to integrate gradually among normal children .In the afternoon he does daily 2 hours of ABA therapy at home, under the direction of a psychologist with great devotion and commitment. We have good results, newdevelopments and acquisitions. The worst is the language progress, but as we started from scratch, it is good that he is willing to speak and he already says a few words consciously and properly. I am proud of my little hero, because at 3 years and a half he works at least as much as a child of the first grade. Still, he has the power to remain the same happy and playful child, always open to the other people.
Last summer was a very difficult period for us, because the girl, who had been an adorable, nice and voracious child, becamescared, retired in her world, she lost the visual contact, and accepted to eat only 5-6 types of food and very little of each. The change was even more obvious in her case, because she hadn’t beentormented and permanently sick, as her brother had been. We had already learnt many things from Tudor’s development, therefore we paid more attention to her and we knew what symptoms to look for and observe. I have done little for her until now. I took her to nursery, in order to give her the opportunity to socialize with other children and to eliminate the possibility that she may imitate Tudor, being always around him. There have been improvements, due to the fact that we integrated her into a community. Gradually she regained the visual contact, she accepted to stay and spend time with someone else butme and to a small extent she has begun to interact with other children. She eats only one loaf of bare bread at the nursery. We use to joke and say that she eats the most expensive bread in Romania, because we pay 6 lei for food daily and she has only a slice of bread for this money.
Unfortunately, her behaviour from home and the nursery confirmed the fact that my fears were not exaggerated. Now she has the same official diagnosis as her brother. At present we are in the phase when I gradually prepare her to sit at the work table ,we build wooden blocks and play different educational games, in order to stop her being in a continuous motion. I really need to prepare a team for her, at least two people to work with herand a coordinator. I think it will be even more difficult with her, not only because she’s younger, but also because she isolated herself and hardly accepts to work with someone. Besides, she developed much more stereotypes than Tudor. Although they have the same diagnosis, their behaviour and the responses are completely different.
Everything is done individually in our country at the moment, at the expense of the children’s parents. There are no specialized centres for recovery, places where the therapy could be more intensive. In addition, although there are many children diagnosed with autism in Oradea, most of whom I met at the Association of Autism Bihor ,they are older and they have alreadypassed the most efficient period for ABA. Therefore, together with another family, we are the first who formed ABA teams here. Still we don’t do 40 hours a week, as we should. We can’t afford it financially, either, and in Tudor’s case, he should withdraw from kindergarten, in order to have 8 hours per day for therapy. At the moment the kindergarten plays an important part for him, as he is capable of imitating and copying and he has an intrinsic need of socializing and belongingto a group of children. It wouldn’t be possible for me to offer him the alternative ofanother group of children where he feels good. As he is hyperactive and doesn’t know to play properly with the others, nobody jammed to become friends with him andto visit us, therefore we meet other children only in the park. I consider that at least four hours of ABA a day, instead of the two we do now, are necessary in order to make a definite progress.
Does it help if I mention the daily little malices on the street? If Tudor had an attack of emotion and started to scream in public, because I woudn’t let him go wherever he wanted, there were always at least five benevolent advisors who told us what to do or threatened him with different things or accused me of driving the child mad, and so on… In those moments, when I was so troubled of his inhuman screams and I didn’t know how to fight him to get up and take him to the car to calm down, I really didn’t need any audience or supporters. It would have been best to leave us alone, if they couldn’t do anything to help. Shall I tell about the way the spoilt and violent children in the park used to hit his legs purposely with the bars from the little cars and he didn’t go away feeling rejected, but only tried to avoid the collisions? Those children’s parents only told them affectionately to leave him alone, saying “Don’t you now that Tudor doesn’t understand?” .Where was Tudor’s fault? Maybe I should have taught him to be violent and answer back with the same hatred, because this is the rule for survival in this wild world? As a final example, one day he was running happily after thepigeons in the park, as he loved them and liked to see them flying. He didn’t harm them, he just ran joyfully among them. An elderly man, who was feeding the birds, warned him to let the pigeons alone, and when Tudor continued his play, as he couldn’t get the meaning of his words, the man simply hampered him and the boy fell very badly on the sidewalk. Who is the one with an inappropriate behaviour, then, the child of three years old or the grown-up of 60,who should have had much more wisdom at that age? We got used to all this. When something like this happens, I simply take him from there and we go to watch the trucks on the road.
Our former friends moved off one by one. I understood them, because everytime they asked me about the kids, it might not have been very pleasant for them to hear me talking about diagnosis, therapies, progress or failures. Personally, I wish I could have told them how my child participated in a “Smart Baby” contest or how we went to a toy fair or how beautifully they recited some poems. As long as the lifewe live every day is just a continuous fight in order to help them become independent and to recover as much as possible, I am sorry, but I have no other topics of discussion. This is what I do.
There came new friends instead-families with children in the same situation. We have been helped by them more than we could hope. They have offered me information, advice, materials, and sometimes, in moments of despair, encouragement and sympathy. People whom I met for only one hour have done for me more than other friends of a lifetime. That is just because they know what I have been going through and also know how important the information in this area is.
Although I have a degree and I tormented myself to get my master degree when the girl was just a few months old, all the specializations and diplomas are useless now. I have had two consecutive maternity leave periods and after the girl is two, I am going to remain home, taking care of them, during another official child care period for one o them. My schedule is very busy, I take them to the nursery and kindergarten and bring them back home, I prepare the materials for the therapy, I attend the therapy hours with one of the therapists, I take them out for a walk-being both hyperactive, they need much physical activity, they wouldn’t stay a day indoors. They need permanent companion and nobody could replace me, because as a parent I care the most and know what is best for them, as a parent is the constant and most important person in the first years of a child’s life. For all these reasons, it wasn’t hard for me to give up all specializations and professional achievements and to dedicate to them entirely.
Unfortunately, the amounts received by me and the children on the basis of the disability certificates are modest.
The only one who has an income is my husband, who works daily from dawn to dusk. Our savings have already gone, now we barely pay those involved in Tudor’s therapy, the necessary materials and provide the housekeeping money. I don’t know of what resources we could broaden his team for the future and, the most important, to form a team for his sister, given the fact that this is the optimum age for her recovery. Moreover, in a few monthswe might need to use a foreign consultant, to help us surpass the difficulties that could appear sometimes on certain therapy programmes. All these cost enormously.
As you know, their diagnosis is not one which causes sympathy and compassion around. Seen on the street they appear to be two normal, beautiful kids. Most of the people don’t know what autism means and what great efforts have to be done in order to recover these children.
But you who have read our story and understand us, help us help them! We haven’t lost ourhope that in a few years they will be like the rest of the children, not only physically, but also emotionally, mentally, socially. They will be two independent happy kids!
Scris in septembrie 2018
Au trecut deja ani de la stabilirea unui diagnostic. Ani in care am aflat multe referitor la spectrul autist, la recuperare, terapii, integrare. De autism nu mori! Inveti sa traiesti cu el! Zi de zi! In autism nu vorbesti de vindecare. Vindecare e la o persoana, care a fost candva sanatoasa, are o boala, ia un tratament si se vindeca, revine la starea initiala! Dar in autism, din start, din perioada prenatala, creierul copilului e structurat altfel, DIFERIT, nu ai cum reveni la o stare initiala sanatoasa, in acceptiunea de normal…ci doar se vorbeste de RECUPERARE…care poate atinge diferite grade, uneori chiar pana la recuperare totala. Copilul, ajuns adult, reuseste sa fie functional in societate, fara ca cei din jur sa isi dea seama de mari diferente de la normalitatea acceptata…..el se va simti diferit in continuare, va percepe diferit sunete, situatii, legaturi umane, dar va sti, pe baza celor invatate in zeci de ani de terapie, cum sa gestioneze aceste situatii, cum sa nu mai fie frustrat in aceste situatii, cum sa isi amane nevoia de diverse stimulari senzoriale pentru mai tarziu, in intimitatea propriei locuinte etc.
Tudor a ajuns in clasa a VI-a. Este integrat in invatamant de masa, in clasa de neurotipici, la o scoala in comuna de domiciliu. Este tolerat, acceptat, ar fi mult spus ca are prieteni dintre colegii de clasa, dar s-au obisnuit cu el. A facut fata cu brio schimbarilor, de mutare a locatiei scolii la terminarea claselor primare, de schimbare de profesori, colegi etc. Prieteni, si-a facut intre copiii din spectru, care vin la noi la asociatie de ani de zile, cu care are activitati cateva zile pe saptamana, mergem impreuna in excursii, avem tot felul de proiecte comune, care ii face sa interactioneze. Oricum pana acum a depasit toate pronosticurile date de specialistii, care l-au evaluat si au lucrat cu el la inceputuri! Este un copil inteligent: anul trecut a avut a doua medie pe clasa, este perfectionist, nu lasa nicio sarcina nefinalizata si la maxim de rezultat posibil, canta la pian, calareste, ajuta la orice sarcina in gospodarie, stie gati, este explorator in diverse excursii pe care le facem si isi face o cultura generala tot mai bogata prin cunostintele practice si teoretice acumulate! Dar..cel mai important, este un copil extraordinar de tolerant, constiincios, dornic sa ajute unde e nevoie…in primul rand sunt mandra de el ca OM cum a evoluat!
Din pacate acele statistici, care aratau ca autismul la fete e mai rar, ca incidenta, dar ca la fete sunt cazuri mai grave, s-a adeverit la Antonia. Desi ar fi trebuit sa fie totul mult mai eficient, sa fie o recuperare mult mai rapida, date fiind deja cunostintele noastre despre autism si terapie, a echipelor de terapeuti formate, a coordonatorilor de terapie ABA la care aveam acces etc..totusi, nu a fost asa….caci a intervenit potentialul copilului, gradul de afectare…Antonia s-a dovedit total disturbata pe partea senzoriala, care i-a creat piedici in orice situatie…s-a dovedit foarte afectata pe centrul vorbirii, astfel incat la 11 ani este evaluata pe limbaj la nivel de 2 ani…dar are o inteligenta cognitiva scolara peste medie…fara sa o invete nimeni stie tabla inmultirii, tabla impartirii, stie engleza de nivel intermediar…in scris se poate concentra si exprima peste nivelul varstei ei cronologice.
Am incercat tot felul de metode de deblocare, pe langa terapia cognitiv-comportamentala. De un an face hipoterapie. Anul viitor incercam sa incepem seria de sedinte de delfinoterapie, sistematic, minim 3 deplasari a cate 10 sedinte de delfinoterapie+ alte proceduri la acel centru (laserterapie, stimulare de limbaj, micropolarizare etc).
Am citit undeva si am incercat sa aplic sfatul: in lupta pentru recuperare, sa nu uitam sa ne traim viata din prezent! Am incercat si sper ca am si reusit sa le ofer o copilarie fericita: merg in excursii, stiu amandoi inota, calaresc, merg cu barca, tiroliana, role, bicicleta, trotineta, au animale de companie de care sunt atasati, merg mult in natura, au invatat sa zambeasca si stiu ca au (deocamdata) oameni pe care se pot baza oriunde, oricand, in orice situatie!