Nieves Boullosa She worked in a business until, overwhelmed by the situation, she was forced to stop working. She is the mother of two girls, both with special needs, especially the eldest, with severe autism, non-verbal, without sphincter control and 76% disability“I have a 10-year-old girl, Lucía, who is autistic, and another eight-year-old girl. When I got pregnant with the second one, we still didn’t know her sister’s diagnosis. The little girl has dyslexia, ADHD and a vision problem which complicates the issue of reading and writing and at an academic level in general quite a bit,” he says.
Lucía needs constant supervision, something that her ex-partner couldn’t cope with, so decided to separate and give custody to Nieves“it became too big for the father and when Lucía was about 5 years old, I separated and he directly gave me custody, because it was very complicated for him. I found myself with two very small girls and with many support needs on my own, for myself It was very difficult,” he remembers.
Nieves, who is a business employee, did bobbin lace to be able to reconcile, but it was not possible, “It didn’t even come with a reduction in working hoursbecause it had to open at 9 in the morning and she lived very far away, and even less so when Lucía started at a special education school, which is wonderful, but it starts at 10, so even with a reduced day she couldn’t even reach schools, because it is impossible to find a job where you start at 10:30 or 11:00. The one she goes to, which is specific for autism and subsidized, has reception, but many do not,” she says.
Nor could he hire anyone to pick them up, because “Lucía she needs to be with someone who knows her“She’s a complicated girl.”
The CUME, your ‘salvation’
So, after a while of trying, decided to join the CUMEthe benefit that allows you to reduce your working day by up to 99% when you have a child with a serious illness without a reduction in salary, “I started to have serious health problems because it meant a brutal extra effort, and I applied for it, but it wasn’t easy, they gave me a lot of problems because autism does not appear as such in the law. I fought for it and I got it, and thank goodness, because I don’t know what would have happened to me otherwise. I worked in commerce from Monday to Saturday, and a business that did not close at noon was impossible to reconcile.”
Precisely the expansion of the CUME beyond 26 and specifically adding conditions such as autism is one of the demands of the disability sector.
I found myself with two very small girls and with many support needs on my own, it was very difficult for me.
Thanks to CUME She is calmer and can better attend to her daughter’s needs.which are many, but he assures that still support is missingespecially in cases like yours, where you take care of your daughters alone, “the father takes them one weekend out of every two and doesn’t have visits during the week because he doesn’t want to, I’m not going to force anyone to be with him.” her daughters, so all the care is for me, and Lucía is an escapist, she doesn’t speak, she doesn’t control her sphincters, she doesn’t communicate…”
Furthermore, due to certain behaviors that it has, it requires constant supervision“she puts anything in her mouth, she sucks the walls… I can’t leave her with my mother like I do with the little girl, for example, because I don’t want to leave her that responsibility, for her and for my daughter. Recently, while playing, she gave a headbutt and broke her nose, and recently my mother stayed with her for a while and called me to tell me that she couldn’t find two batteries. It was stressful thinking that she had swallowed them. Now she has taken to putting things in her mouth. , it eats everything and it is very dangerousThat’s why my house is like a lot, I don’t have anything within reach that can be put in my mouth, I keep the dangerous ones under lock and key,” he says.
To which it is very grateful is the assistance dog that they have at home, “it helps her a lot, the calm… especially lately, since she has had to sit for a long time because she broke her fibula. She even helped us so that we could do an x-ray. First we had Hana, who already she is retired, and now we have Conguito,” she says proudly.
Respites, supports and more financial help
Although, thanks to the CUME, Nieves assures that he is better than before, he believes that he still There is still a long way to go before families like yours have what they need.. For starters, someone who can support them when caregivers can’t or need to do something outside the home,”that someone takes care of them when we can’tbecause there are no extracurricular activities or respite activities, and those that exist are very expensive, you have to have a very high economic level to access them, there must be public services in this sense, shelters, activities…”, he insists, “we need help with supports that are basic“I’m no longer telling you to give me time to have a coffee with a friend, which would be a utopia, but for basic things, so that someone could give us a hand at certain times at home.”
To access a service like this, you can apply for dependency, but you are forced to choose between home help and, for example, financial aid for care in the family environment, financial aid that many families dedicated to paying for therapies that are not covered by our health or social system, “right now, in the dependency law you have to choose between financial help or help at home, but what good is it if they give me help at home, which is also usually very scarce, if they take away the money with which I pay for the therapies,” he complains.
More financial aid would also be another of Nieves’ demands, and this is even more the case, which is a single parent family“the father gives me support of 200 euros for each girl, and I pay absolutely everything, and now only the sensory therapy that he gave last year or at school is more practically that. In fact, before we did a lot: hippotherapy, therapy occupational, sensory integration, swimming pool, adapted athletics, speech therapist… but not this year, It’s exhausting and very expensive.“.
In the dependency law you have to choose between financial help or help at home, but what good is it if they give me help at home if they take away the money with which I pay for the therapies?
As is the health that You have to pay because waiting lists are impossible in publicor the dentist, who has a much harder time than a non-disabled child because they have to sedate her every time she goes, “they have given us an appointment for the digestive in May because of the tendency to eat things, suck on walls… she has helicobacter and It can’t wait, we have to analyze it, which is a picture… And I have had to pay for a private doctor, which is a pain, and the same with the dentist, more than 1,000 euros every time we go,” he laments.
Furthermore, everything adds up, not only in money, but also in exhaustion, because caring 24 hours and without support exhaustsand not just physically, “all this takes its toll on us caregivers in the end, we have to be with psychologists… at least I have one at school that I can go to from time to time, but otherwise I would have to pay for it myself, or I mean, I wouldn’t go. I wish they made things easier for us…”
#Nieves #Boullosa #mother #Lucía #autism #Caring #exhausting #takes #toll
