March 25, 2023 at 9:57 am
BAARN The parents of 15-year-old Darique from Baarn have been struggling for years with the behavioral problems of their mentally challenged son. One of their last straws is dolphin therapy on Curaçao. A donation campaign has started for the family. “We hope that the sharp edges of his difficult behavior will come off.”
When Darique was just born, we stuck our heads in the sand. Doctors and people around us saw that something was wrong,” says mother Jolanda van Velden. Darique was born dysmature, meaning he was born at the due time, but was too short for the gestational age. He had an enlarged chest. He had no mimicry. Around twenty weeks of pregnancy, there were already tensions: a thickened nuchal fold was visible, which could indicate a serious heart defect or Down’s syndrome. Jolanda: “It turned out that he did not have either, but it was not until years later that we heard that a thickened nuchal fold can also indicate other syndromes.”
DO NOT CRY As a young child, Darique was very quiet. Father Henk: ,,He stretched himself out, kept his head far back and crawled around like that. No one could control the position in which he was best held. We soon took him to physiotherapy and that was the start of a long series of treatments with different therapists, specialists and doctors.” According to his father, he could not cry. Darique has no mimicry, he didn’t indicate if he was hungry. Giving food was very slow and very difficult. “We had to do everything by feel, and lived according to the clock”, Henk remembers. After a year and a half, Darique became so ill that he ended up in hospital and was given tube feeding. He used it for nine years. Research has been done into Darique through the WKZ and the Sylvia Tóth center. Several doctors examined the boy. Finally, a clinical geneticist diagnosed EBF-3-HADDS, a rare neurological syndrome. This syndrome generally affects the nervous system, muscle tone, speech and general development. Darique has autism, a high pain threshold and smaller cerebellum, hand and foot abnormalities and skeletal problems, among other things.
DIRECTOR At the age of twelve the first behavioral problems started. Jolanda: ,,Because he has the intellectual capacity of a three-year-old child, you cannot make agreements with him. He thinks he is in charge, he wants to be in control. He is unaware of danger. We have had locks made on all windows and doors, because if you are not careful he will flee the house. He has already sat on the roof, walked out the gate regularly and then we found him at the fire station or at the supermarket, where he was shopping on his socks and had placed his shopping cart full of goodies.”
Henk adds: “We always have to keep an eye on things, because he is very smart.” His behavior has a lot of impact on the family and especially on his younger sister Jennah. Henk: ,,He locked her in the closet, hurt her and scared her regularly. We can’t leave him alone with his sister and we always have to go somewhere with him in the car because otherwise he will attack the driver. He is also no longer allowed on the bus of his day care, because he fails to unfasten his seat belt while driving, or takes off his clothes. He always knows how to find something to hit you and is physical towards us. ”
Henk is a postman in the neighboring neighborhood, but even has to interrupt his work regularly to help out at home. Jolanda stopped working completely a few years ago to be able to take care of Darique at home if necessary. Jolanda: ,,Yet there are many beautiful things about him that we cherish. He can make very direct jokes, for example. He is also very affectionate.”
DOLPHINS As he gets older and stronger, his behavior also becomes more intense. Jolanda: ,,We hope that at some point he will trust people, and that he will get more rest. Now he suffers from many changes. For example, he has a lot of trouble going to sleep, we often don’t have the evening to ourselves until 11:30 pm.”
Dolphin therapy can help a child to deal better with fears and attachment problems and that is why Darique’s parents are focusing their hopes on a dolphin program on Curaçao through the organization CDTC. Jolanda: ,,We hear very positive results about the therapy. It can give Darique confidence and we hope that the sharp edges of his difficult behavior will come off. We have already tried several therapies and hope that this works.” During the therapy, a dolphin is selected for Darique and his family to work with, because in addition to Darique, his parents and sister also receive therapy.
The family hopes to be able to leave for Curaçao next April. The donation campaign can be found at www.doneeractie.nl/crowd-funding-voor-darique/-69812.
by Maranke Pater