About me

Postat pe: Monday December 15th, 2008

We are the parents of five years old boy, Rares, an angel to me and my wife, an angel that unfortunately cannot fly: he suffers of autism, and cannot understand the world that he lives in and he cannot tell us what he feels.

My wife’s pregnancy was hard and full of problems: pneumonia in the third month, followed by an appendicitis operation in the sixth month. The delivery was also hard; even if the little one was marked with a 9, he had acute hypoxia, he began breathing after a few seconds and they had to give him oxygen.

The first six month went well, Rares would develop normally, he would gain weight, and he would follow us through the house and would laugh filling our hearts with joy. He had a crystal clear, catching laughter that he kept until today. First problems occurred at six month: it was already winter and he had caught a cold three times in a row. Worried, our family doctor (a woman we have all respect for and to whom we thank for everything she’s done and will do for us in the future), sent us to run some detailed tests, to see why Rares has so damaged immune system. The results: Cytomegal virus (CMV) and hypogammaglobulinemia; a virus that is carried by 90% of the people, and it’s harmless if we catch it after the first six month of our lives. Rares got it in the womb, maybe during the hospitalization for the appendicitis operation. Briefly, a nonexistent immune system against which even vaccines had devastating consequences. Eighteen month of Isoprinosine and Viusid treatment, intermission, blood tests, once every two month, for, at the age of two and a half, to find out the good news: the immune system was able to fight and develop antibodies.
At seven months, during the treatment for the immune system, we noticed that Rares was turning blue around his mouth. Also, hyperkinesias signs were starting to show. He was always crawling around the house, but so fast, you couldn’t keep up with him and he could not sit still. We were sent to NPI, where we were told that he is hyperactive because of the acute hypoxia, and the reason for turning blue around the mouth is a poor circulatory system. Tanakan was prescribed, and we began to administrate it.

At the age of one, we began to realize that something is not right: Rares was not looking us in the eyes anymore, he wasn’t paying attention to us, and he began to run all the time instead of walking at a normal speed. Besides, he wasn’t gaining any language skills: he was making isolated sounds ( ga-ga, ba-ba), but never associate a sound with an object or an action. Also we noticed often finger and toe spasms during the first part of Rares’s sleep. We went again at NPI, where we were told that he has cerebral mioclonics, caused also by the acute hypoxia and they’ve confirmed the hyperactivity. Then was the first time we heard: “Stay calm, have patience, he will recover in time and catch up.” At least he wasn’t turning so blue and so often around the mouth anymore.

Till the age of two and a half followed a long line of treatments for language development, and attention improvement, and to lower his cerebral mioclonics (which untreated could degenerate in epilepsy). Many of the treatments couldn’t do anything besides making him more agitated. Finally we discovered that he reacts well at Rivotril, for cerebral mioclonics, as for language and attention improvement, we had given up the treatment (he took Encefabol and would agitate him very much). Again we were told: he will recover, he will catch up. Meanwhile we began to go at a recovery center, twice a week for an hour, where he would attend logopedy and melotherapy (which we interrupted at the age of four, when we started ABA)

At two and a half years old, we were lead to homeopathy. Then we achieved the first results: an improvement of attention and a reduction of the hyperactivity after a treatment with Tarantula Hispanica. But the bad administration of the medicine (3 doses a day for 6 months), lead to the loss of its efficiency. After this, we tried another homeopathic remedy, without results though. When Rares was almost four, our homeopath doctor was harder and harder to find, and for a month and a half she was nowhere to be found, not at the cabinet, nor at the telephone, even though we’d call her three times a day. We looked for another homeopath doctor, and we were lucky this time: we found a doctor that practiced her profession with heart and passion, which changed the way of the administration and the dosage of the remedies (one small dose followed by the analyze of Rares’s reactions). Rares is now much calmer; he is not autoagresive anymore and accepts interdictions.

Meanwhile we had another two unfortunate events:

I.The first, in December of 2006, Rares fell, injuring his chin on a chair. During the fall, the lower teethes went through his upper lip, perforating it. We hurried to the hospital, at the emergency, where we were asked only about his age and about his weight, and they rolled up his sleeve, while yelling at us to calm him and at him to stop crying. They did not listen to us telling them he has a problem and gave him an antitetanous injection. This after three weeks after he had the DiTePer vaccine. What came next is hard to describe: 41°C temperature for 4 days, fury attacks, frustration attacks, he wasn’t listening to us anymore and he became very autoagresive at every interdiction. Plus, the cerebral mioclonics that almost disappeared for good, reappeared, more violently. Then we began the treatment with Keppra, which is still taken.
II.The second event came after maybe the happiest period of his life: in 2007, in June, we went to Greece for a week. Rares adores the water, and there we stayed at a villa, 50m from the sea. He was the first to wake up, go to the balcony, and he would drag us out of the bed, so we would go to the seashore. He was happy all the time, smiling all the time, hugging and kissing us at his own will. When we came back, he got chicken pox; he had small bumps even on his tongue, there were 5 small bumbs on a squared centimeter. After this Rares was again angry, frustrated and autoagresive.
Now after the homeopathic treatment, he is calm again. Plus, we began to give him fish oil with Omega3, and it seems to do the trick.

We knew about ABA, in fact we’ve heard about ABA, but a specialist (a psychologist at a renowned autism center from the west of Romania), told us that ABA is not for Rares, that the therapy is pure soldiering and wouldn’t be good for Rares, so we didn’t search further more. Big mistake, because now we realized that ABA is our angel’s chance of life and his chance of knowledge.
We had other therapy tries, there was a logoped, Corina that came to our house everyday for an hour, and which Rares liked very much. There was little progress, but Corina had to leave for Belgium for studies, and we couldn’t find anyone else to take her place and Rares to like.

We’ve reached the age of 4 years and 4 month and Rares wasn’t accumulating anything. Rares was attending a normal kindergarten for some time (after lots of searches and dismisses, Montessori Timisoara opened a door for us), but could do nothing for us. Even if Rares was very happy to go to kindergarten, he couldn’t eat there, couldn’t sleep there and couldn’t take part to any of the activities of the other children. He simply would run from room to room, put different things in order and push the little kids, amusing him. The teachers were helpless in front of his hyperkinesias. We’ve tried different ways for him, the nanny staying with him there; we’ve employed an integration psychologist to go there 2-3 times a week; sadly there were no results.

During Christmas time, in 2007, we were hopeless. Everybody was enjoying their Christmas presents, and the Christmas spirit was everywhere. Even though we’ve bought presents and we’ve decorated the house the way we knew best, our hearts were full of sadness, and the hopelessness was eating our hearts out, little by little. Rares didn’t understand anything and was more and more deepening in his own world and the miracle we were waiting for each year in that period was not happening. We mobilized ourselves and began to search for other solutions; we didn’t go out of the house for days, only to take our little angel to play outside. We were not visiting; we isolated ourselves and devorated everything the internet could give us about autism, focusing on autism.ro forum.

First of January 2008, Rares took the Portage test, and the result was what we were beginning to realize those days: mental age level: 19 month and IQ level: 39. We began to gather our strengths: we formed a team of four tutors and a supervisor.

Why we needed help? Beginning with 14th of January 2008 we began the ABA therapy with Rares. Everyone who is experiencing the same thing, even if they have a child or a relative with any form of autism disorder, knows that the biggest problem is the lack of specialists. At this moment, the families come to be the best specialists, next to a few people that worked with ABA therapy since it began to be applied in our country.
Certified ABA therapists do not exist in Romania, as well as the state’s support in this matter does not exist either, this therapy not being applied in any of the state’s institutions. In Timisoara we had the chance to find this person, Anca, our coordinator, the “chief fairy”.
We searched for tutors, and we found the most marvelous and dedicated girls. Four “fairies” for Rares, who learned along with us, read the materials and come with new ideas… they are wonderful. We want to do more for them, to help them become specialists for all the kids with this kind of problems. We want very much to send them to formation courses, and we want to bring a foreign coordinator, that could adapt the program and could teach as well us as our”fairies”.