The text contains advertising links from our partner.
A reader, the mother of a young man with Down syndrome, contacted us, describing her experience with speech learning, which in the end did not bring the expected results.
Paweł’s mother pointed out that there is little knowledge on this subject, society associates Down syndrome primarily with a slightly different appearance, intellectual disability and possible accompanying defects. Meanwhile, triggering speech is sometimes one of the biggest challenges that parents, therapists, teachers and the interested parties themselves have to face
Although most adults with Down syndrome speak, there are some who do not speak. And it is not always possible to indicate the cause of this condition
On March 21, we celebrate World Down Syndrome Day
Take the TEST and check if you take good care of your health
The letter is a record of the author’s experiences and contains her personal beliefs
For as long as I remember, we have talked to Paweł a lot. Speech therapy calls this a word bath, a practice that is highly recommended. We read to him. When I returned to work, my mother took care of him and talked to everyone to death. We sat the little one down, once he was sitting steadily, we crouched down opposite him and spoke loudly and clearly so that he could see our mouths.
Instructed by a speech therapist, we gave the baby face and cheek massages from the first weeks. In the first month, we went to an early intervention center, where I immediately made appointments with all available specialists. We continued the recommendations at home, plus educational toys, teaching aids, speech therapy programs on CDs borrowed from the office… We did our best, we tried everything. Paul was in no way neglected or left to his own devices. This is often the opinion of parents of younger children with the syndrome, whom we sometimes met at camps or in our association. I’m not surprised, they were at the beginning of their journey, full of enthusiasm, believing that persistent rehabilitation would make the disability disappear.
The article is continued below the video.
When Paweł was three years old, he went to kindergarten. He stayed there for several hours a day with healthy, talking children. We hoped he would start imitating them. There was no integration or special facility in our area, only an ordinary rural kindergarten. Neither the principal nor the teachers were afraid that Paweł was still in a diaper (they quickly helped us remove the diaper), he did not speak or eat on his own. After a year of being with children, after potty training, he used the toilet himself, ate alone, dressed himself. But he didn’t speak. He played with the children, who immediately accepted him. They understood his gesture language. He quickly mastered showing, and we still use Makaton gestures in communication. Paweł is also able to take us by the hand, lead us and show us what he currently needs. He quickly mastered this art.
We postponed him, he spent four years in kindergarten, started self-care and socialized. However, there was no speech at all. We could have continued to defer him from school, but I knew that kindergarten, although wonderful, could not give him any more. There was no specialized therapy that our son clearly needed. However, he had a speech therapist, both in and out of kindergarten. We heard from specialists that we have to wait. Keep working, “flood” him with speech. That maybe there is some blockage. We checked if he had hearing loss – he didn’t. It was within the norm.
We hoped that when my sister, who is three years younger than me, starts talking, Paweł will follow her and that it will become a stimulus, a trigger for him. The little one talked like crazy, he said nothing… His first words appeared when he was less than 10 years old. The simplest, most basic ones. And still nothing, not a move. And he even moved back a bit, because there was a time when he said “am-am” – first at the sight of food, then when he saw me preparing something, and finally he even signaled hunger. Then it stopped, I don’t know why it happened.
We decided that he would go to a special school, approximately 30 km away from our town. There he found himself among “his own people”. He was rehabilitated even more intensively than before – four times a week with a speech therapist (at school and privately), an hour with a psychologist, with a pedagogue, hand therapy, the Knill method, SI classes… A multitude of specialized therapies to support speech learning, but the results were insignificant. . I’m not saying they aren’t effective, but they didn’t work for us. However, I know many children who have been successfully guided through various methods.
At the same time, we were developing alternative communication. And here, at the beginning, “stairs” appeared. Some speech therapists we worked with were absolutely against it, claiming that it would inhibit the release of speech. That the child will become lazy, that he will prefer the language of gestures, because if his mother and the teacher at school understand them, why should he make an effort? I don’t deny it, it made us think, but fortunately our friends from England explained a lot to us. There, Makaton and other forms of substitute communication are widely used by non-speaking (or poorly speaking) people and their caregivers. Available research shows that these techniques develop and accelerate speech. If a child has predispositions, he can speak – he will speak. I once read that “he will always choose speech” if he can. There is no fear that it will “go silent” due to substitute communication. And the inability to communicate and express basic needs causes great frustration, even aggression or self-aggression. I saw children banging their heads against the wall. I wanted to spare Paweł this at all costs.
We were advised to pretend that we did not understand Paul in order to “force” him to speak. Okay, maybe this will work for some children, but for those who are really struggling, this strategy will only cause frustration again, so I would ask you to be careful. Like many other parents, I wouldn’t have the heart to constantly pretend that I don’t understand my child. What if it’s hungry or wants to drink? Should I stand over him and tell him that he will only get it if he says so?
The fact that my child might have Down syndrome did not impress me. It was love at first sight
Fortunately, we also met highly knowledgeable professionals who encouraged us to develop alternative communication. That’s why today Paweł knows many Makaton gestures, he uses them efficiently, including: communicator. Let me explain that it is a communication aid device on which words or sentences are recorded (e.g. “I want to drink”) and a non-speaking person plays them back by pressing a button with an appropriate graphic illustration. In our case, my husband recorded the announcements, not me, so that Paweł “speaked” in a male voice. Additionally, a communication notebook with printed illustrations depicting activities and objects. The son can also put together a simple statement from pictures. He used all this already at school.
By the way… The special school, and according to my knowledge, also SOSW, OREW and educational and therapeutic teams, “do not cause problems” due to communication barriers. Teachers in these institutions are able to work with non-speaking or almost non-speaking children, they develop individual programs and select work tools. I can’t imagine this in integration or mass production. I believe that the best form of education for children with intellectual disabilities is provided by institutions created for them. Parents of younger children who do not speak yet, although they have reached school age, sometimes wonder how education will proceed if there is no feedback from the student. Let me reassure you – when your toddler gets a communication tool, he will move forward.
I remember that years ago I was terrified by the thought that our son might not speak at all, but over time we began to get used to these thoughts. Today we do not perceive the lack of speech as a tragedy. We have not learned how to “force” a child to repeat syllables or words. First comes expression, then understanding. We had a problem here and here. Today I can say that Paweł has mastered passive speech – understanding – quite well.
Perhaps in Paweł’s case the lack of speech is caused by a greater impairment (significant degree – according to the “paper”). However, I know cases of non-speaking “our children” who perform better in non-verbal intelligence tests, some with a slight degree of intellectual disability, others almost at the lower limit of the norm. However, they also developed a “blockage”, the inability to speak.
Delayed speech is a part of Down syndrome, it is yet another element that makes everyday life difficult and requires intensive work. What comes naturally to healthy children usually requires hard work for “our” children. We cooperate with speech therapists and other specialists, but the results are sometimes uncertain. These few words that Paweł says appear spontaneously, he never uses them on the command “say-repeat”. Down syndrome is not only an intellectual disability and accompanying defects, but also often serious communication problems. The fact that a child does not speak or speaks only little and clearly does not mean that the parents did not work enough with him. I want to emphasize that the effects of our work are sometimes disproportionate to the expenditure. And I appeal to young parents not to be afraid of alternative communication, but to equip the child from the very beginning with a tool that will allow him to express himself and communicate his needs. Without this it can be really difficult.
*the characters’ names have been changed
Thank you for reading our article to the end.
Stay updated! Follow us on Google News.
SEE ALSO
Content from the Medonet website is intended to improve, not replace, the contact between the User and his/her doctor. The website is for informational and educational purposes only. Before following specialist advice, in particular medical advice, contained on the Website, you should consult your doctor.