A Mother's Story from France

Témoignage d’une maman d’un gentil jeune homme ZTTK — Please click this link to read mom’s testimony in French.

Our son is born in 1999 in France at 34 weeks. His weight was only 1.990kg ! Rapidly we noticed that he spent a lot of time sleeping and when he was awake, he never smiled even when we did funny faces or noises (his reactions were not those we had with our oldest son when he was baby) ; he was just looking at us with big amazed eyes. After 3 months I decided to stop feeding him (thinking that it would be easier to feed him with bottles and that he will gain weight more rapidly) …. Very bad choice indeed ! He started to have very complicated digestion and having him drink was really exhausting since we could spend 1 hour to make it take his bottle, and after he cried 2 hours because digesting was painful and it was quite time again to feed him again … His weight and size were always far below the normal curves and he always looked much more younger that his real age (it’s still the case and it’s not so bad since in his head he’s much more younger than he real age). I remember whereas he was 1 year old, a woman in an office congratulated me for my “new born baby !”…

At 6 months he started physiotherapist to stimulate human reflexes which were totally absent and after to help him having a good balance.

Seizures started very young (initially absence, then complete seizure and after laughing seizure (gelastic crisis) but Micropakine is efficient and he quite has no more seizure (we just had to be careful in case of fever or in summer during high temperatures).

At quite 3 year old, he managed to walk alone (but we really had to use imagination to help him accepted to try to walk alone, without clinging to us). In fact, I think that his main trouble at that time was probably his vision (even if he had his first glasses at 18months, it has always been difficult to define what is the appropriate correction for him). I used to say to doctors that he was walking like blind people, testing first with his foot what was in front of him.

From 2002 to 2006, he attended a normal school (initially only few hours a week with a woman just for him and each year, he was allowed to attend more longer). At the beginning, school was good for him and for the other young children (especially girls) who were very nice with our son they considered as their baby. But after 2 years, we noticed that he was too late to manage to stay in the future in a normal school where he was not stimulated for his special needs and in the opposite he was completely absent/lost/not concerned at all by the normal learnings. At that time I also drove him 3 times a week to a speech therapist to try to help him enter in communication (he used to spend time stuck on her therapist chest listening her singing). When he was very young, we rapidly notice he never talk but he started to sing. We started to speak to him singing and now he can speak a little (a music therapist explained us that in the brain there are 2 languages area : the normal one and a smaller one in the song area and when someone can’t speak normally, it’s helpful to develop the language area located in the song part of the brain. We did what she recommended and it works rather well. Regarding his size and weight, our son has always been far below from the minimum. At school, somebody recommended me to try a special diet without gluten and casein (it’s so complicated to cook without that we initially imagine to try it only 1 or 2 weeks). But the result were so positive that we finally did it 2 years ! The first benefit was that he stop to drink water by night (before he was needed 2 or 3 bottles and then nights were complicated for all) and he had normal stools for the first time !

While he was quite 7 years, we finally managed to have a place for him in a special “school” (IME in French) for mentally disable children. Unfortunately our son couldn’t stay there more than 1 year because the daily-3-hour-transportation was too much for him and he started to have non stop fever. The doctor told us to stop these too long transportation which were too exhausting for him.

After few months at home we managed to find a CLIS (which was a special classroom for 8 autist children where the ABA method was used (very useful and positive method !) and they could regularly ride pony which was really appreciated ! At that time, the specialist tried to improve his weight when he was 9 by providing him liquid food for sportive people (with many sugars) and it was catastrophic : this caused digestive pains all day long. We discover only when he was 11 that he had intestinal disaccharidases (in fact he couldn’t digest sugars … that is why our diet done years before was efficient since we deleted from his food slow sugars found wheat flour and rapid sugars contained in casein). After this discovery, we decided to listen to him (since the enzyme rate fluctuate throughout the day) and he doesn’t have digestive pain any more. Probiotics are also helpful in case of bad stools. In fact his weight has regularly been critical : each time he has ear or (not visible) sinus infections because he refuses to eat and loose weight (that is why he have antibiotics rapidly in case of infection to limit weight loss and fever).

After the 4 years in the CLIS, since he was 12, he was no more allowed to stay in the CLIS (you can’t stay at school after 12 in France).

Once again we have to investigate to find another good place for him. After difficult months, we finally manage to find his current establishment specialized initially for physically disable youngers (most of them are in wheelchair). Here, before Covid, he practiced sports (all kind but always adapted : special bike ; ski chair ; pony basket ; climbing ; walks; swimming pool – he loves water !-). He also attended shows, visited the city, went to eat ice cream or other nice sweets (since now he can digest them J). He even sleep there 3 nights/week there and he’s happy being with his friends there. He was supposed to stay there only until his 20th birthday but since we don’t manage to find a place for him in an adult specialized establishment, he can stay there waiting for a place to become available where we applied for him (since we are his guardians since he was 18).

Now is 21, when he has no infection, he spends his day singing, watching outside, smiling and he loves meeting people, going outside for a walk, saying “Hello ! How are you ?” to the people he meets or he looks at his 3 brothers (1 is 2 years older, the 2nd one is 6 years younger and the 3rd one is 12 years younger). The 3 brothers were very helpful to stimulate him, sometimes just playing normally besides him, or other times inventing rules to try to integrate him in a game. Our 4 sons love each other and we thanks God to have taken the decision to have other babies, even without diagnosis about the disability of our son … the ZTTK diagnosis arrived only in 2021 while our son was more than 21 years !

Thank you to my husband and our 4 sons for their love !

Signature : a mom of a nice ZTTK boy and proud of her sons

PS: During Covid, since 5 of us have to stay at home together, we discover that the 24h/24 life with our 21 year old ZTTK son can also be very fun!