Turnusy terapeutyczno-rehabilitacyjne – szansa Oskara na samodzielność
Ends at: 04 November 2017
dzięki waszemu wsparciu udało nam się pojechać aż na dwa dwutygodniowe turnusy, na których intensywnie ćwiczyliśmy całe ciało! Dzięki ćwiczeniom Oskarkowi jest łatwiej pisać, jego ciało stało się silniejsze i stabilniejsze, ruchy nie są już tak "niezgrabne" jak wcześniej. Zauważam znacznie wydłużony czas koncentracji, skupienia uwagi w relacji oko-ręka! Ogólnie jest bardziej spokojny i potrafi się opanować w sytuacjach "trudnych".
Dzięki Wam, Kochani, zrobiliśmy kolejny duuuży krok do przodu, za co ogromnie dziękuję!
The story of my son’s illness is long- it has lasted 13 years, so his whole life. And it will last forever. It is both mine and his story because we are both going through it together. I realise that one day autism could ruin my son’s life, therefore I need to do everything that I can to help him. My son counts on me more that he counts on anyone else.
I was meant to give birth to a healthy child- everyday I stroked my baby bump and awaited for the day when my first son would finally be born. Giving birth was not the easiest however it was all worth it in the end when I got to hold my baby and kiss his small forehead. I imagined me placing him into his crib, which I prepared so carefully. However fate postponed this desire. During the second day of his life Oskar suffered a stroke to his adrenal gland, apnoea and sepsis. Instead of taking him home, I watched him laying in his incubator in the intensive care unit, connected to massive machines which kept him alive. Terrified, I watched the doctors, trying to conjure their every move so that they could save my son’s life. To this day I do not know how I had the strength to witness this. Oskar survived. As a result of the stroke to his adrenal gland, Oskar’s left kidney began failing- to the degree that even today it does not have its full function. In his first year, he was diagnosed with an eye defect and he was cross eyed. However the most important thing is that my son is alive.
In the first year of Oskar’s life, I felt that the various diagnosis which Oskar was given kept on piling on- it was as if fate took a hold of us. When he was 10 months old, I was told that my son may not be able to walk- contractions were found in both of his feet. When he took his first steps after the intensive rehabilitation he was receiving I thought it was all over- that I could finally breathe a sigh of relief. Nothing was more wrong. The doctors thought that Oskar’s walking was problematic- Oskar wobbled and often fell. His development was far from normal. After talking to the doctors one word stood out to me- autism.
In spite of this, although many people may think this, my son is not badly behaved or brought up badly. His senses work differently than ours- he perceives and reacts to reality differently. Imagine feeling pain because of a colour or a sound, reacting nervously to different smells and sensations. Others completely do not understand this and yet you have to deal with this on your own. In this situation, Oskar talks to himself or walks around in a circle. Other people, not understanding, perceive him to be weird. For his peers, meeting new people and speaking to them is usually no big deal. For Oskar this is a huge challenge and is extremely stressful. When his friends run around the school corridors, he stand at the side. Spontaneous encounters that involve speaking to someone are actions that are almost impossible for Oskar to do. They are new situations which my son panics about. In spite of the continuous rehabilitation, he still has problems with concentrating, focusing and hyperactivity. Although he is 13 years old, he still cannot write correctly. Therapies and rehabilitation sessions which Oskar needs are not paid for by the NFZ, and I cannot afford to pay for them. We support ourselves only from the care allowance we receive. A few years ago I quit my job in order to dedicate my time fully to my son. I am raising him alone. I fear that when I am gone my son will be dependent on strangers. Discontinuing or pausing therapy means that my son will not only stop developing, but also the effects that have already been achieved will be slowed back. It's a few steps back that we can not afford.
I would like to use all the methods of treating him and rehabilitating him which are available to not jeopardise what has already been achieved. I know that ahead of us we have many years of fighting but we both have each other and together it will be easier- given that the money we need for rehabilitation won’t run out. Please help me to give my son the chance to be independent.
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