Letter from a father who shares experience with his diabetic son

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.

fer said:
my son is diabetic since he 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, I could practice adapted and inclusive sports with professionals who do knowWork 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.

How sad Fer .... I do not want to imagine what you are happening .... What helplessness!
I hope your fight is worth it and in the end it is this disease so unknown with the recognition it deserves .... mood and a lot of companion, a hug for these daddies so brave and warriors that give everything for the mostimportant that we have parents .... children.I hope life rewards you as you deserve .... 💪💪💪

That inability that I claim so much and was so frowned upon by the diabetics and they treated me like a weirdo and said diabetes is nothing there are worse diseases, if there are worse, but also better,

My mother, fer.It seems terrible to me.With the number of diabetic children today, I do not conceive that there is no protocol in school for them.In addition, they should each course principle, give a talk to your classmates in which you explain what diabetes consists of, what can happen to the boy and how they can help you in case you have a crisis and, of course, give normalto the issue of capillaries, insulin, bailouts, etc.Nothing to hide.
It is third world what you tell.Your child does not need to be declared a disability, only needs support in schooling, just as they give it to those who have dyslexia or learning problems, he needs an adult to be pending of his glycemia and, with the means that there areToday, it is not so complicated.Anyway, I would contact the City Council first and then with the Concierge of Education showing the situation and requesting a solution.

To take those measures @ENSALADA, you have to have 33% and as we all claim that we are fine and we are like non -diabetics, but I remember any bad said 'M we are still better because we take care of each other, the administration took advantage of those comments and nowWe regret,

It reminds me a lot of what I happened to my daughter, I changed the turn at work to be able to measure it at recess and I once found it 30, and running through the patio.I also requested the disability, with a 0% response.
The glucagon, I didn't even take it to school, I already knew that they could not demand that they put it on.It was living with the soul in suspense, and with those tested insulins.
But almost 30 ago
Years and there have been advances, parents can request paid work permits, there are sensors, many schools with nurse., nasal glucagon ...
I would recommend that father a change of school for another with a nurse.
And the concession of the disability in children or whatever is called now, it should be immediate, they are totally dependent when they are so small.

And let it know that I do not make the comment for revenge, is that the comment of that child hurts in my soul as if it were me, because I also know what diabetes is, and it is fucking to live with that backpack, and we do not haveNo aid or early retirement, which even sailors for the hardness of work can be retired at 55 and we do not get anything, it is shameful, but we have gained it

Not all schools are the same.In my center (public) there is a fairly clear protocol with training for all teachers at the beginning of the course, nurse of the available health center, information to classmates, nasal glucagon in the classroom ... and our student with diabetes7 years never stay alone!But we have had to deal with a problem that put me on my nerves: an impressive overprotection by parents.Come on, that perfection does not exist ...

I do not believe that disability is the solution, it must be mandatory to have a nurse in schools as soon as there are children who require attention, not only diabetics, there are more diseases that require attention.We also want children not to stigmatize, that they are all the same, none different, etc.etcetc
Parents about protectionists, all day glued to the mobile seeing the child's curve and complaining because they have not put insulin at 180 or given something to eat at 150 (each one manages as he considers) or assaulting the teachers in case this or theother.
Very complicated, difficult to meet the expectations of these parents and reduce the responsibility of teachers and the school nurse.

As soon as a disease is limiting to develop a job, disability mustSecurity bodies, etc.etcetc
Where is the balance?

Degagia, overprotection of the parents, aggressions “but that we talk, which is what we defend, so that they put a nurse should recognize you something, and if we are like non -diabetics, because they do not put anything on us, step of this, this, thisIt is like trying to put doors to the sea, or worse the community that there is always one that does not see it that way, because each one that manages as well as possible, that guay having diabetes like that I take care of me more !!
It is my particular opinion,

@Andrespmat if they recognize you great diabetes for disability and associated aids, but on the other hand you reduce rights such as the renewal of the card every 10 years or oppose security forces.
I see very difficult to satisfy everyone.
The same in school.All parents want their children to be treated by the nurse in school but at the same time they do not want other children to point to their own because they are different.

It is not demagogy, it is human behavior.Nothing satisfies us.

True @ruthbia

I believe that the balance is that disability is recognized in children, because they cannot be managed alone and would die without treatment and, after adults, each can decide whether or not to request it or not.
Anyway, now there has already been a very important step with the right of parents to paid leave at work, for the care of a child with serious illness.
I would have had to stop working to serve my daughter, if I could not change schedules and turn to my husband.

@Regina The child is not incapacitated, you only need medical attention and solve with a nurse.If you incapacitate him, the father will have deductions in the rent but does not avoid coming and going to school and concerns.
If you grant leave for attention to a sick minor, forget that they hire you, they say goodbye before 6 months for not having exceeded the trial period;And if you are in template they throw you or make you moving until you go.
The existing option is a nursing service.Eye!that I would not like to be that nurse with 4 or 5 diabetic children and each with a guideline according to each father/mother .... crazy.

In my neighborhood there is a public school with a nurse.May I know, diabetic students have no recognized disability.It is an integration school, where children with motor problems, Down syndrome, cerebral palsy, if their parents prefer not to go to special education, can be school.
My children (they are healthy) went to that school and agreed with a child with special needs.
Each beginning of the course is given a talk to all teachers to explain how they have to ensure children who have some medical condition.They teach when and how to put adrenaline to an allergic or glucagon to a diabetic.All this in case the nurse is not available.
Diabetics go on excursion like others and participate without restrictions in all school activities.They have even been able to go to the Snow Week, yes, accompanied by their father or mother.
It is not necessary to declare disability to a diabetic child, you have to school it in a center that has media.I do not know if in Asturias there are no schools with this service, I speak of the Community of Madrid.
That is why he recommended that they go to the City Council (which has the powers on the centers of Infant and Primary) to raise their situation.

@ENSALADA, I worked at an integration institute here in Asturias, and those children with disabilities had their caregiver, what there was no nurse, I do not know now, but if they had granted the disability, the diabetic children would have granted their specialized caregiver (nurse/o) Mandatory.That is the advantage.
@Ruthbia, now parents accept that labor law, the company does not subsidize, but its mutual.It is a saving measure.

regina said:
@salad, I worked at an integration institute here in Asturias, and those children with disabilities had their caregiver, which there was not was a nurse, I don't know now, but if they hadgranted disability Diabetic children would have granted their specialized caregiver (nurse).That is the advantage.
@Ruthbia, now parents accept that labor law, the company does not subsidize, but its mutual.It is a saving measure.

The school of which I speak has a nurse because children with disabilities come.
Children with disabilities have a caregiver, true.
Diabetic children do not have disabilities or caregiver.
The nurse serves all the children of the school that need it: those who have disabilities, those who have diabetes, those who have allergies and those who have nothing, healthy children, who are overwhelmingly mostly (fortunately).My son made a gap in the head in children and it was the first resource that attended him until I picked up and took the health center.
I do not defend that all schools have a nurse because it must be very onerous for public coffers, but since there are more and more children with food allergies, asthma, diabetes, etc ... it would not be to have a center that has a center that hasThat service to school these children in security conditions.
From private school or talk, there are free to select students and they will not host children who require more attention than the academic.
What is the fate of these children?Stay at home?Being at school running through the patio with 30 glycemia as Fer's example?
I am not making a proposal, I am exposing how a CEIP works that I know firsthand, because it is where my children studied primary.

@ENSALADA, Agree with you, but those specialized centers are counted, they can be very far from home.Ideally, all schools had nurse ,.But we don't get to that yet.
The girl who ran through the patio 30 of glucose was my daughter.You can already imagine how I lived., And how I would have thanked help, without disabilities or with it.

What more bleak, horrific experience and how to change life to family.
In our case, we live in a town in Catalonia, at school there are 3 children with diabetes 1 and both direction and teachers have always been with us parents.Our infermera in diabetes taught the professors what to do.A teacher made an extra training as a reference for others in a hospital in Barcelona.Every year with the change of tutor, he has explained what to do in class in gymnastics on the excursions and in the colonies and always unlike wanting the boys to do everything.I have not only found support at school also but also in all extracurricular ones.Total that my son has never had a feeling of being different.We start at 7 years and now it has 12.

evacf said:
What more bleak experience and how to change life to family.
In our case, we live in a town in Catalonia, at school there are 3 children with diabetes 1 and both direction and teachers have always been with us parents.Our infermera in diabetes taught the professors what to do.A teacher made an extra training as a reference for others in a hospital in Barcelona.Every year with the change of tutor, he has explained what to do in class in gymnastics on the excursions and in the colonies and always unlike wanting the boys to do everything.I have not only found support at school also but also in all extracurricular ones.Total that my son has never had a feeling of being different.We start at 7 years and now he has 12.

Congratulations to your school.That is the way.
Fortunately my children are healthy and we have not required help in the schooling stage.
But I sincerely empathize with the parents of diabetic children.It seems so unfair to children and so complicated for parents ...
The case that Fer has exposed and that of Regina have scrambled me, it produces indignation and sadness in equal parts.