Mees’s Story

SLC-MeesSmMees is a very affectionate, busy and sweet boy from 3,5 years old. He got his SLC6A1 diagnosis when he was 2 years and 9 months old.

When Mees was about 6 months old, he was very interested in his hands. He kept looking at them and turned/moved his hands in front of his eyes/face. He did not use them to pick things up and had no interest in toys. That´s where it all started. We got referred to the physiotherapist, who referred us to the pediatrician. At first I thought that Mees just didn´t wanted to touch things with his hands because he was insensitive/too sensitive in his hands. Then we started with solid food, when we gave him something to eat what he never had he just didn´t seem to know what to do with it in his mouth. The taste was no problem but the structure was. Another thing that we noticed is that he always liked to look around. He seemed to be very satisfied when he had enough to see. That is still the case, go walk with him or cycling and he sees all kind of different things and he is happy and satisfied.

Mees has many characteristics of autism, moves around the whole day, fidgets a lot with his hands and has epilepsy. With falling asleep he needs my hand to fidget, that makes him calm down. Mees loves to be outdoors and he also likes to be in water. He goes to a special daycare, he makes progress, but in his own speed. He now picks pieces of bread from a plate himself (we have to make sure he does not stuff his mouth), he has a little more interest in toys (not very much though), he seems to understand the word “no”. Important to know for us that there is something he understands because it’s still not clear to us what he does and does not understand. He cannot speak yet. I have no idea how the intellectual ability of Mees is. Somewhere I think he’s pretty smart, but he does not really show that yet. We don’t know, the future will tell. This journey with Mees is challenging but also taught us very much and above all he fills our hearts with so much love! He is such a lovable and special boy!