My name is Cristina, I am from Ciudad Real and, most importantly, I am the mother of two boys. One of them is affected by 22q11 deletion, his name is Oscar and he is 15 years old. I would like to talk about him and tell you about our experience as parents.
Oscar was born on the 14th of December 2001. It was a natural birth and he was born at 39 weeks of gestation.
When he was in my tummy, I could only notice the movement of his little arms. The gynecologist said that he was a very big baby and that he didn’t have much space.
When the birth took place, there was an inordinate amount of amniotic fluid. Oscar was born with a very white complexion and made a strange noise with his throat. The next day I started to breastfeed him, and milk started to come out of his nose, which alerted us to the fact that we had to see the first specialist, the otorhinologist.
As the months went by, Oscar didn’t do what the other children did, we started with genetic tests, evoked potentials, resonance, early stimulation, neuropaediatricians, etc…
Nobody would tell us what was wrong with our son. At first, there was maturational delay, expressive and comprehension dysphasia and we kept this diagnosis until he was 14 years old, when he was finally diagnosed with the syndrome through an Array.
In all this time our battle has been unstoppable, from the most elementary things: showering, dressing, eating, sleeping, social relations, education…. to the most complex, always sick with bronchitis, otitis and fever.
Today the battle persists because you don’t know when it will end. As he grows up the problems increase, especially with society and with his education at school, we don’t see support, we don’t find a place and the most unfortunate thing is that psychological problems begin.
As parents, the only thing you look for is their happiness and personal growth, but it is very complicated.
If you are not happy you don’t grow personally, if you don’t grow personally, you don’t increase your self-esteem, if you don’t increase your self-esteem you don’t look for challenges or ways to improve yourself….
How much would we like to find a specialist to help you in this day to day, we know that there is no magic wand, but it is very important to find that support. Although unconsciously the phrase of every family with this type of problem was, is and will be :
” I DON’T HAVE THE ENERGY TO GIVE UP.”
Today Oscar is a great sportsman!
Greetings to the Association, thank you for being there.