I share a letter published in the newspaper and with which I sympathize 100%.
My son is diabetic since I was four years old.He has to carry a backpack with a heavy load that others do not have, but we have always encouraged him to normalize it, to be independent, and that his diabetes does not condition him.
Suddenly, we give each other with the sad reality: collapsed health and without personnel.On the political level, you better not speak.The first batacazo, at school: they encourage us not to bring the child because childish is not mandatory.Teachers do not know how to act or manage it.Suddenly, one gets unmarked, understands the situation and decides to collaborate by doing hair glycemia.His classmates recriminate ... Many fears ... and, in the middle of the storm, a four -year -old boy for whom the only thing we want is that he goes to school like any child, but that he is sure during theschool dayWe request a nurse at school like other communities: they denie it.Time passes and, waiting for the situation to improve, the reality is that it gets worse.
We attend school between five and six times a day to correct their sugar levels, becoming sitting in the car, in the school parking, waiting for them to call us on demand.We have found the child only in the school courtyard with severe hypoglycemia, with a risk of diabetic coma.We have had to hide the child in a separated class to look at glycemia, because they did not let us do it in front of the other students, as if we were doing something wrong.We have tried that, just as cardiopulmonary resuscitation talks (RCP) are given with ambulances in the school, explain the diabetes to their classmates and also to dining personnel and caregivers.We have not achieved it.
Isn't it normalized?
Specifically, we have signed an action protocol with the school, (because there is no action protocol for diabetics in Asturias) in which I have had to prove our employment situation and have availability for the demand of the center, that is, that I could not workand assist the school daily to make glucose measurements, as well as attend extracurricular excursions in which my son will participate.
I have asked at school if in the event that there was an emergency, someone would put the glucagon, and no one has answered me (it is a rescue injection and avoid it is a relief omission).
We have reached school many times with the heart in a fist when we find him alone in the courtyard with severe hypoglycemia and we have doubted a thousand times when he left the school door if he took it or leave it.
We had to see how they rejected him in extracurricular sports teams for being diabetic.
Nothing has been easy.This whole situation has led our child to brutal emotional decompensation.We have gone to inspection, spoken with political positions, social workers, teachers.All very good words, but no solution.
For all this and many more things, we decided, very much to our regret, request year after year the recognition of your degree of disability.Because we do not want to "make our disabled son," as they told us, but yes, he needs that opinion of 33 percent to adapt his diabetes in his day to day.Because yes, he needs an adult "like all minors", but he is a minor with a type 1 diabetes, who needs insulin every time he eats, he needs to change the sensor and catheter on demand, he needs to make hair glycems, injectionsof rescue to try to avoid ketosis, hyperglycemia and manage an insulin pump with a thousand alert variables, control meals, the post and previous exercise it does ...
Obtaining your disability would be the solution to many problems.Among other things, you could practice adapted sports andInclusive with professionals who do know how to work with people with this type of functional diversities.Because let's leave a clear thing: with that role you cover your backs;That role puts limits to many marginalization situations.
There we find another problem that I explain below:
The criteria that is valued to achieve 33 percent disability in a diabetic are three income a year of more than 48 hours in the hospital, with ketoacidosis.An indispensable requirement, an absurd, illogical evaluation criterion, a norm that makes no sense, without feet or head.
This is the prize we receive, we, their parents, for a good management of diabetes ("almost perfect", would say its endocrine) with absolute and exclusive dedication.For us it would be very easy to decompose your diabetes and cause your consequent income, which, it seems to be - is the only thing that matters.Obviously, we do not do it, because we do not put our life in danger.It is the only way to avoid long -term complications and avoid the consequent future expense to HUCA due to poor disease management.
They are minors with a chronic disease for life, which should have recognized disability without the need to beg.It is a right that belongs to them, which would have to be recognized since the diagnosis of the disease.
Today, they have already been denied three times, without ever exceeding 24 percent.We want to publicly report such a situation and demand that this absurd norm lacking any logic be repealed.
We fill our mouths with words of solidarity and understanding.We presume a collaborating, empathic, solidarity society that helps others ... we lack a lot.
Greetings and encouragement to all warrior diabetics.