As we didn't believe to Robin's genetic diagnosis and we felt it as crucial, we were constantly looking for contacts. Our friends found unbelievable: DNA tests can be done in the second place in Europe - in Belgium; and there is a support group for Stickler Syndrome in Holland. Thank to them, we contacted with Prof. Beemer from Utrecht Medical Center (Holland). We arranged an appointment with him - he would examine him and if necessary, he would arrange the DNA tests in Belgium.

As my brother lives in Holland near Utrecht, that was a splendid opportunity. We visited him and his family (see MKHL). Our insurance company didn't repay anything, but we did it.

Our geneticists were sceptic. "You know, we are good specialists. They can give you the diagnosis via internet, but they are not better than us" - and so on.  

The first thing we were given in Utrecht was unambigous information: it surely is not the Stickler Syndrome. We need not worry about Robin's eyes. That was really marvellous information. And after consultations with the group of other doctors, Prof. Beemer said us the proper diagnosis. It is called CHARGE and although it is a genetic diagnosis (it is on the gene level), it originates spontaneously in most cases. Moreover, symptoms don't have tendency to become worse - the prognosis fully depends on the level of damage of individual ograns.

At the beginning of the fourth year of Robin's life, we had an interesting experience. Robin with severe hearing loss did hear us from distance of 4 meters, without hearing aids. He even obeyed to "come here". Repeatedly. After a week again nothing. But he is responding from time to time.

Either his hearing is sometimes better and sometimes worse, or it is something else. Together with other observations, our suspection for autism became nearly certainty. Robin is autistic, he has problems with hearing, but maybe not so bad as we thought. We don't have his official diagnosis on autism yet, but we believe our observations. If he don't get it, we would believe us, not specialists.

Actual information is, that on 21th of October, 2003, Robin was at last successfully on BERA investigation and his hearing loss is after all severely damaged. In any case, it doesn't change his autism. Now we have verbal information from specialists that he is autistic (with 99% certainty).

How autism in Robin is visible: absence of eye contact, minimal communication (the maximum is when he pulls our thumbs and wants us to open the door which he likes to shut and open), he likes to work with lights and water, with slippers, he throws everything, he gets undressed at any time and in any place, he rocks, he liked to lay (on the other hand, he is often very hyperactive), he doesn't express any emotions, he doesn't cry and smile a lot, he doesn't perceive danger. He is very sensitive to light. He lives in his world. He prefers objects to people. He progresses with leaps. Some paradoxes are in his development (we didn't teach him to dress or undress, but once immediately he knew it; it was similar with drawing). He is able to learn a lot, but never uses anything he had learned in common life...

It is much more better to know right diagnosis than to blunder in ignorance. Once problem has its name, one can be much better oriented and is able to look for right ways of solving it. Autism is only the name for bizzare behavior of our son for us, and we can begin to solve this problem in a concrete way.

Autism is percieved as whole-life disorder with clear end in some institution. We are very unmodest about Robin's growth and we are looking for the ways which would lead him from his problems. We have known a little about Son-Rise before. It is therapeutic method by which a lot of autists were cured. We began to collect as much information as possible (it wasn't easy), most importantly we have found splendid person - Linda - the Son-Rise therapist in the Czech republic (near us). We became enthused for this therapy. We believe today not only that we will be successful and we could lead our son from his autistic world to ours, we also believe that this will be the last big issue with him.

In January, 2004, we have attended the special Son-Rise StartUp course in London, where we learnt how to do this therapy. And now we are going to spend most of our time with our son in a special playroom (which we are now preparing). We had to raise a lot of money for the course (see Fund-Raising section), but lack of money was the last thing which could discourage us. 

Together with information about Son-Rise, we received also information about strange theory about autism - that autism is a metabolical disease. Simply said, bad splits of some proteins are leading to being permanently drugged by morphins. Experiences of some people after start of special diet without gluten and milk are unbelievable, though healty scepticism says that this would not be the whole truth - probably not all autists are "GFCF-positive". Finally, if this was the whole truth, Son-Rise would not work. And vice versa. 

In any case we began with the diet and we are extremely anxious to know, what it would bring. Surprisingly, it is possible to find enough meals without gluten and milk.

And so ends our story for now. It is without the happy-end yet, however we feel it - in the fact that after the years, we are fully identified with the fortune of living with the special person Robin, in resolution and optimism to the future. It sounds unvelievable, but we percieve that if we are given the possibility to decide if to leave with Robin as he is, or to live other life without him, we would choose our exceptional son. 

Date of the last update: 27th of January, 2004