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Nino  7 years old

Testimony of his mother -October 2022

Nino is 7 years old and is the third boy for his dad and the first for me.

I was anxious by nature and had an autistic nephew, so I swore to myself that I would be objective about my child so as not to lose time if something happened. So from the moment he was born, I was disturbed by his incessant crying. Then at one day of life, I was worried by this baby frog position that reminded me of my nephew. The caregivers didn't listen to me and told me that I didn't know how to do it. I went home feeling very alone with my baby who spent his days screaming.

At 15 days of age after he had cried for over 5 hours. I went to the emergency room crying not knowing what to do. A pediatrician saw that he could not suckle and that he was hyperlaxed. After several hospitalizations that solved a sucking problem, reflux and an allergy to cow's milk proteins, our child's crying never left our daily life.

Nino cried too much, was a soft baby, did not like skin to skin, the light... I often asked my doctor but between interns and replacements, there was hardly any regular follow-up with the same one. Besides that, he was growing and eating with higher and higher curves and then he was a baby who loved contact, very naughty and full of life. But on the advice of my mother, a nursery assistant, when he was 18 months old, we took him to a psychomotrician. It could only do him good.

After sitting up at 12 months, standing up at 18 months and walking at 24 months, we enrolled him in school for his second birthday. On the advice of the director, we postponed his entry for a year and she advised us to contact the CAMSP for an opinion.

From there, a first diagnosis was made: axial, peripheral and oral-facial hypotonia with hyper laxity. For two years, he wore shells to prevent his ankles from collapsing. An accompaniment could be set up: speech therapist, sensory psychologist, psychomotricity, an MRI came back negative and annual genetic tests were done.

Our daily life and our social life have been disrupted. Not because of his delay but because of his hyper sensitivity accentuated by his tiredness. With the constraints that this imposes: he can't stand certain noises (car horns, the noise of motorcycles, airplanes, all household appliances, fans in stores, doesn't like to eat hot, heat, crowds...). All this generates a lot of anxiety and fatigue for him. But we finally had some answers. During his 4 years of kindergarten, he could only attend school 4 mornings a week with the help of an AESH and in the afternoons he was kept at a kindergarten assistant to allow him to recover. By choice, we did not want to reduce our professional activity which was the only social link we had left.

Then genetics spoke and in 2020 the MYT1L syndrome was diagnosed. Nino is still progressing despite his learning difficulties. He has a great visual memory, little filter, and he is a great talker. He can hold great discussions. He is a curious child, full of life who goes from laughter to tears and is always looking for a relationship with others. Apart from the delay, his biggest difficulties are his hypersensitivity and the management of his emotions which are always intensified by his tiredness.

This has isolated us a lot, but for the past year, I have been able to take him out of his comfort zone. Daily life requires energy and organization because anything can trigger uncontrollable laughter or anger where he can put himself or his friends in danger. 
Well rested without external interference, he is just beginning to listen to his body.
After more than 3 years of support from the CAMSP, he has just been accepted into a SESSAD after two years on the waiting list. This year, he entered CP Ulis TFC. This change generated a lot of violence towards his other friends but after a month and a half, he finally got his bearings. And his behavior has calmed down.

We have experienced great victories: the day he stood on his legs, walked, his first sentence at 5 years old, riding a bike with wheels... and yesterday he finally knew how to swing alone. The path is full of pitfalls but we are convinced that the relationship he loves is a driving force for him. And then, there is a place for everyone.

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