When he is a baby, Marleen Mensink (33) already notices that her son Owen (now 6) develops differently from other children. He makes few sounds and has difficulty with eye contact. After referrals to various healthcare providers, the diagnosis follows TOS: a language development disorder. “In the beginning I sometimes doubted myself as a mother.”
“I noticed quite quickly that Owen didn’t make much of himself as a baby,” says Marleen. He is her first child. Her sister also has a baby, who made much more noise. “Owen also made very little eye contact. Furthermore, he developed at a rapid pace. He could stand at nine months. When he was one year old, he could already run. As soon as he could do something, he wanted the next thing,” she says. At first she suspects that he has a form of autism. But he does like to cuddle and that doesn’t match that image.
Temper tantrums
When he is one year and three months old, Owen starts throwing tantrums more and more. “He then banged his head on the ground. He could also only say a few words: ‘no’, ‘yes’ and ‘papa’ and ‘mama’. We didn’t understand him.” He is also often ill. “In a month he was sick for three weeks. He had a cold, or had an ear or throat infection. Then I banged my fist on the table at the GP for a referral to the ENT specialist.” At the age of two he has an operation: he gets tubes and his tonsils are removed.
However, certain complaints persist. The employees of the consultation office can’t put their finger on it either, so Marleen aims for a referral to an audiology center, where he gets a hearing test. “That test was good. That didn’t surprise me either, I knew there was nothing wrong with his hearing.”
Diagnose TOS
When this is ruled out, Marleen begins to suspect what is going on with her son. “My husband has two older cousins with TOS. I suspected that my husband had it too, because it is a hereditary condition.” Several tests follow, such as an IQ test, aimed at language, which is tailored to the level of a toddler. “That resulted in TOS, in combination with ADHD or autism. Because he was so young, no definitive diagnosis was made, but there was ‘a suspicion of’.”
What is TOS?
A developmental language disorder (TOS) is a neurocognitive developmental disorder. This means that language is processed less well in the brain. For example, a child with TOS has great difficulty speaking or understanding language. As a result, language and speech development differs from that of peers. More language offerings alone will not help; a specialized treatment offer is needed. TOS does not disappear as the child matures. They can, however, become better understood, learn more words and make longer sentences. (Source: Kentalis)
Special primary education
When he is three years old, he starts with early treatment at the Pento audiology center in Zwolle. “He went there three times a week. He was offered a lot of language. We explained it to him; he especially liked that he was allowed in the taxi. He came home completely tired. And then came corona.” That is not conducive to his language development: he is not motivated to do exercises at home behind the computer.
When he has reached primary school age, there is a multidisciplinary consultation between different organizations – such as the primary school, the audiology center and the cluster school (a school for special education) – to see what the best place is for him.
There are various clusters in special education. “He was too good for cluster 2, which is for deaf and hard of hearing children. Eventually he goes to cluster 4: this is special primary education. The difference is that he has a small class, that he has speech therapy twice a week and that he works a lot with pictograms.”
“As a parent I sometimes thought: why don’t I have a normal child?”
Owen thrives in his new environment. “He is comfortable in the group,” says Marleen. “He has already played twice with a classmate. He also pays more and more attention to his younger brother, Stan, now that he can do more.” She also clearly sees the difference with Stan: “Stan plays with toys, but Owen sometimes just dropped them.”
He is, however, excluded from playing by neighborhood children. Because he is fairly tall, he is often overrated in what he can do. “He understands a lot, but cannot talk back properly. Children look at him differently, he is not allowed to participate. Fortunately, he doesn’t care much about that himself. We will let him go to swimming lessons and football training and that is going well.”
Wrestling
Although she talks about it with ease, she has struggled with the fact that he is different. “When you find out that you are pregnant, you see a certain image in front of you – of making friends, playing with each other, the school that is nearby… In short, whatever you are used to yourself. As a parent I sometimes thought: ‘Why don’t I have a normal child?’ My husband had less trouble with it, he thought it was fine. But I wanted to get the most out of it, so that I could never say afterwards ‘I wish I had done this or that’”, says Marleen.
She has to practice a lot with him at home. “But Owen really has a mind of his own. He can read, but he doesn’t want to sing. Then I put on music for Stan, hoping that Owen will sing along too. And furthermore it is a matter of offering a lot of language. I can’t have a whole conversation with him. One moment he can say a difficult word, the next moment he has already forgotten it.” She gives an example of the way she communicates with him: “I shorten the sentences. In a child with TOS, communication does not go in a straight line, but through all kinds of twists and turns in the brain. Often they only remember the first or last word. So I shouldn’t say, ‘Owen, don’t do it’, because then he will. But, ‘Owen, don’t.’”
Learning words through play
She looks back fondly on the help she received, although she realizes that this will not apply to all parents with an unknown disorder such as TOS. “I am lucky that I come from healthcare myself, so you know where to go,” she explains. “I am his mother, I understand him like no other. In the beginning I sometimes doubted myself, for example when my father said that I should practice more with him. But what helps is to offer him the words in a playful way. Then we walk through the forest and I let him name the colors.” Marleens sees Owen’s future fairly positively. “At school he does very well with the pictogram board. Many kids get stuck when something unexpected happens, but it doesn’t bother Owen. In group two he was given a test, which showed that he could do basic pre-vocational education if he continues to develop in this way. I’m at peace with that. He likes to work with his hands, is super social and likes many things. If I had a ‘normal’ child, he might also have gone to pre-vocational secondary education. My priority is that my child is happy.”
“He can go far if he is challenged enough”
She thinks he can go far if he is challenged enough. “When he was two years old, he could already ride a balance bike. He could ride a bicycle at three years old! As long as you give him the confidence, that is very important.”
‘Follow your mother’s feeling’
“TOS is permanent: it is a disorder that you cannot get rid of. But you can learn to deal with it. You can say: send him to special education, because he can’t do anything. But you can also challenge him there,” says Marleen. Owen also has his own dreams for the future: when he grows up, he wants to drive a car. “Of course he has no idea about money. I then tell him: you have to work for it, for example by doing a newspaper round or filling shelves in the supermarket. Mom and Dad aren’t going to pay for that for you. There’s nothing wrong with him, he has two hands. He can also play football very well.” Her most important advice to parents who suspect their child has a language disorder? “Don’t wait too long, have research done and above all follow your mother’s gut.”
