By Pamela Cruz with information from Manuel Ortiz. Peninsula 360 Press.
Developmental disabilities are a group of conditions caused by a deficiency in areas of learning, language, behavior, or physical areas. About 1 in 6 children in the United States has one or more developmental disabilities or other developmental delays; One of the most heard about is autism spectrum disorder (ASD), which, with appropriate treatments, can improve the quality of life of children with autism.
Manuel Ortiz interviewed Maribel Hernández Gómez from the Center for Excellence in Developmental Disabilities at the Mind Institute of UC Davis in the Península 360 Press rolling studio, who pointed out the importance of mothers and fathers being able to have information based on scientific evidence to support and help your children be diagnosed and treated appropriately.
But what is the definition of autism?
"By definition, it is a neurodevelopmental condition, and it is currently diagnosed at an average of four years of age, but marks can occur or can be noticed as early as 12 or 18 months," said the community outreach specialist. Hispanic.
Of these marks, he said, there is a long list, but when an evaluation is done to make a diagnosis, it focuses on what the communication is like, such as the absence of verbal language, or that it exists, but is not functional.
Another part, he specified, is stereotypy, repetitive behaviors - like when these children make lines with the carts, that instead of playing with the cart they play with the wheel of the cart, when we see these children who have difficulties with food, when our little ones only want to go out through the same door; In general, do they have rituals to do certain activities?
In the case of foods, he specified, they are those that, for example: they have a favorite food and cannot eat anything else, that foods of different colors cannot be mixed, or in general no food can be next to another, ? They are behaviors that are seen, that are noticed, that is not something functional and is impacting their development, does it impact living together, the social part?
Given this, what should be done if there are suspicions that our children have autism spectrum disorder?
When there is a suspicion, Maribel Hernández stressed, it is necessary to go to the pediatrician, who should be the person who makes the referral to the Regional Centers in California, "a place where you can also call and request an evaluation."
In addition to this, he explained, schools can also support in this type of situation, referring to specialized care centers, regardless of whether the child is over 3 years old.
?You go and ask for help at school and say: my child is 3 years old and he is not talking; My son is 3 years old and hasn't left his diaper; My son is three years old and he throws himself on the floor when he gets angry, there is no communication, he hits; When all these concerns exist you can call the Regional Center and call or go to your school and you can connect them with your doctor?
Stigmas begin at home
For many, the stigma and fear of what people will say can prevent mothers and fathers from seeking professional help, derived from feeling guilty, said Maribel Hernández, who has two children diagnosed with Autism Spectrum Disorder.
"Many of us parents feel guilty, but we didn't do anything for this little boy to have autism, it's part of life, like some other difficult parts of our lives, but isn't there something we could have done differently so that this wouldn't happen?" , he expressed.
And, he specified, stigmas only lead to not seeking the appropriate help that children require to improve their situation, which is not always ASD, but an adequate diagnosis is necessary to obtain the best treatment.
?As we know, the brain develops between 0 and 6 years of age in a wonderful way, which is why intervention is so important. If there are concerns, maybe it is not autism, maybe there is just a language delay and it is a good idea to go to this evaluation, to be given the support so that this child develops language and catches up to his or her abilities. old friends?
However, for the parents of a child with ASD, the diagnosis can generate grief, which is not always linked to the death of a loved one, as it entails loss, this can be of a job, of a love, of health, and yes, also losing a "typical" child, the first stage of that grief being denial.
?This denial happens because it hurts us a lot, we don't want our precious son to have difficulties, so that's why we say: no, he's going to talk, my brother spoke until he was 5 years old; All this is going to compose itself, and we create that alternate reality where nothing is happening, but in reality it is happening.
Given this, he stressed, it is necessary to get to work, seek the necessary support and services.
California residents have privileged help, unlike other states in the country, as there are Regional Centers, which support people with developmental disabilities from age 0 to the end of their life.
In addition, Medi-Cal also supports children with these types of needs, regardless of their immigration status.
Maribel Hernández recalled the importance of going to specialists and appropriate centers for care, since simply listening to your neighbor or taking advice from social networks can only delay the child's help and improvement.
?Now, with all this communication and how easy it is to become famous and give recommendations, I think it is very delicate to take care of ourselves from those people who want to take advantage of our pain, take advantage of our desperation to cure our child, and offer us some treatments to cure autism that do not have any scientific evidence and we do not know if they will work. Sometimes we have more faith in that information because people know how to sell themselves, as opposed to evidence-based practices. Be careful, if in addition to curing autism it cures other things and is very expensive, possibly they are deceiving you and taking advantage of your need?, he warned.
Patience is important, and that is why the specialist called for not taking panaceas.
?Children grow, they do not stay small, it is very important that we work with them when they are small, when we can redirect them, when it is difficult for us to take them to the movies, go out to the restaurant, be in the park, but now "Since they are little it is a lot of work, if we don't work right now when they are adults it will be a little more complicated," he pointed out.
Suggestions for parents of a child diagnosed with developmental delay or neurodevelopmental disability
- Designate a folder to organize your child's information: evaluations, reports, communication log, meeting notes.
- Contact local agencies: Regional Center, School District, Health Care Provider, Family Resource Center (in Sacramento Warmline area) http://www.wamlinefrc.oralespanol.html, PTI Parent Training and Information Center (DREDF for Northern CA) https://dredf.ora/educacion-especial/.
- Attend support groups, conferences, workshops, and community activities https://health.ucdavis.edu/mindinstitute/events/index.html.
- Learn about your special education rights and obligations ~IEP (SERR DRC https://serr.disabilityrightsca.org/sp/)
- Review the Lanterman Developmental Disabilities Services Act IFSP/IPP https://rula.disabilityrightsca.org/es.
- Visit the CEDD MIND Institute website and trusted sites (.edu/.org/.gov) https://health.ucdavis.edu/mindinstitute/centers/cedd-spanish.html.
- You can contact the CEDD MIND Institute Resource Center, online in Spanish at 916-703-0439 or 916-734-1812, where you are invited to be part of a community of parents and professionals committed to improving the lives of children. people with disabilities and their families.
- Be part of the investigation https://health.ucdavis.edu/mindinstitute/registry/index.html.
Stay informed, continue learning https://www.facebook.com/CEDDCENTROPARALAEXCELENCIAENDISCAPACIDADESDELDESAR/.
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