If you are here, I want to welcome you to this place, which will be yours, a unique and wonderful space for us to share stories about our lives around the Autism Spectrum. Let me invite you all to this, your home, where we can surround ourselves with this beautiful community of parents with children on the spectrum, family members, caregivers and, why not?, people with the diagnosis to share their experiences and find a place rich in knowledge, help, real stories, stories of achievements and mutual support in a world that, although misunderstood, is truly beautiful because it is home to the beings we love the most.
My story as a mother of a child on the autism spectrum
Let me introduce myself. My name is Marian, known at home as Mom. Fortunately, I am already called by that name. I have gone by several names such as Elly, Nana, Nani, Mayan, among other names that my beautiful son Milan has given me in his speech development, since he started talking a little late.
I was born and raised in Valencia, Venezuela. Due to the situation in our country, I was forced to migrate, leaving behind my family, my life, and even my college degrees. I moved to the United States at age 30 and have been here ever since. I married a wonderful man, his name is Guido and he is Venezuelan like me, after about 3 years of dating. We had wanted to have children for a long time, but it was a bit of an uphill struggle. The years went by, trying without losing faith. So after about 3 years of searching, our beautiful miracle came to us. We couldn't believe it. After so much time, I saw a beautiful positive on the pregnancy test. I'm not lying to you. Even though we longed for it so much, I was super scared, but I was the happiest woman in the world.
We were worried. A few days after we found out, we went to have an ultrasound done. We wanted to make sure that it was actually a pregnancy and not a false alarm. In the United States, medicine is a little different from what we were used to in Venezuela. Here, it is very protocolary and restrictive. For example, they don't do a pelvic ultrasound for pregnancy until 8 weeks and I was only 5 weeks along according to my calculations. It was then that, by moving a few keys, a friend did us the favor and we got the long-awaited ultrasound. We still couldn't tell what it was and they wouldn't let you hear her heart because they say it's dangerous for the baby. But there she was, with a heart beating healthily.
From then on everything changed. I took great care of myself and enjoyed every stage of my pregnancy, which was developing normally. I was very careful to make sure that every time I spoke to an ultrasound technician, she made sure that everything was going well. I made sure that they knew that I was a nurse so that they could tell me in confidence about any eventuality. That is something different here. They don't tell you anything until the specialist writes the report. The ultrasound technician only does the ultrasound, she is not the one who writes the report, and my obstetrician was not the one who performed the ultrasounds, which by the way are only 4 in the entire pregnancy, unlike in my country where the ultrasound is done at every visit to the doctor and he himself lets you enjoy that beautiful image for a while contemplating the beauty of nature... the formation of a beautiful baby.
Months went by and everything was going normally. I took my prescribed medication, I took the best prenatal vitamins with DHA, I was careful not to consume products that could harm the baby, and my pregnancy developed without incident. At the time of birth we were already prepared. I jumped on my giant exercise ball for two days to dilate as soon as possible when I started to feel some pain. It was a somewhat long process since I started having pain on a Sunday night and it was not until Tuesday night that they accepted me into the hospital because I was not dilated more than four centimeters. The dilation never advanced more than seven centimeters, so on Wednesday at 7 pm I was undergoing surgery to finally meet my son.
“He was born!!!” My husband said as they showed him to me and I struggled not to fall asleep due to the amount of anesthesia they gave me, since I started to feel pain in the middle of the surgery. I had also spent about four days without sleeping. I don’t think I slept from that moment on. They took us to the recovery area and then to a hospital room where we stayed for three days.
God's perfection has no limits. Every second I admired that beautiful being that my body had helped form and grow. It was perfect, it is perfect. A mother's love is infinite because we make beautiful, wonderful and perfect beings, at least for us they are, and we bring them into this world with love, patience and dedication. There is no creation greater and more beautiful than our children.
Milan's life before and during his autism diagnosis
My little one grew without any problems, good height, weight, and met all the normal percentile points for his age. He received a good dose of breast milk, I took care of educating myself, researching and giving him the best I could so that he would grow healthy and strong, and so it was.
I always tried to watch videos and read information about cognitive growth according to Milan's age and I observed him to see that he met all the items for his age and he always met them all until after his first year when I began to notice that he did not meet certain criteria for his age.
One day my husband talked to me and told me that he sees Milan with strange behaviors. My husband is somewhat alarmist and that is why I did not pay attention to him, he was also the first child of the two so I thought it was just a matter of his nerves and I did not give it importance, however, after his insistence I took the task of evaluating Milan properly according to my husband's concerns and I could see that he did indeed have somewhat strange behaviors. The truth is that he was a little late in doing certain things that children his age already did. Like walking and talking. I could see that he walked on tiptoe, he constantly hit his head on the chair or the wall, he constantly turned around until he got dizzy and fell, he was very hyperactive, he played with the wheels of everything that had wheels, he did not speak, he did not pay attention to his name, he did not look into someone's eyes, he stared into space all the time like someone with a lost gaze. Investigating, I went further and found things related to autism such as the tendency to develop candidiasis. I fought against his candidiasis from three months of age without being able to control it. He was very hyperactive and did not sleep at night among other things, so after coming across information and videos I was able to deduce that my son had a developmental deficit and could possibly have autism. We spent terrible days, I was very sad, a few months before I had lost my father and now my son could be autistic.
I was obsessed with the subject. I researched and was completely in denial. It can't be... This can't happen to me. I spoke to a very dear friend who has an adult son with a very marked autism, so to speak, and she told me about her experience when her son was the same age as mine and shared many of the same symptoms.
The worst time for parents is accepting that their child actually has a problem. Accepting that something is wrong is very important because it gives us that doubt that we must satisfy. What is happening to my child? Without it, we are not able to seek help and alert the pediatrician that something is wrong with our child.
Advice from a real mother of a child on the autism spectrum
That was the case, and today I thank that great human being who served as our pediatrician, Dr. Mescher, a young man who had a daughter about the same age as Milan. Despite language difficulties, communicating with him was very easy because he has incredible empathy. Great professionalism and patience worthy of admiration. (Dr. Mescher, if you read this, I will be eternally grateful to you) He showed interest in our concern, as I told you before, medicine in the United States is full of many protocols and acting quickly for prevention is very difficult. Timely communication between doctor and patient is very important, but although it may seem incredible, it is a limitation in this country. The doctor explained to us that evaluating Milan to rule out autism would only be possible at two years of age, however, he was very empathetic with our concern and prescribed therapies for Milan to help his development.
As parents, not sitting on our hands is essential. I took the time to educate myself before the evaluation to find the right tools to treat my son empirically, because I am not a professional in that area. In fact, I sought professional help with a therapist in the city of Orlando Florida who is an ITDS Infant Toddler Developmental Specialist. A very professional and wonderful woman who evaluated Milan and interviewed us as parents and was able to give us her opinion as a professional about the symptoms that Milan presented. We traveled at least 950 miles so that she could evaluate Milan since she was in Florida and we lived in Indiana. Without a doubt, her assessment devastated us since she could see that my son could be on the spectrum, and I say could because, for ethics, she is not a doctor and cannot make a diagnosis.
While the time for the evaluation was passing, I looked for various professionals with an online modality and also Spanish speakers who helped me understand autism, establish changes in eating habits, the use of appropriate supplements, the importance of physical, occupational and language therapy at home taught by parents, that is, I took classes to be able to perform therapies on my son at home.
I tell you, the road is long, and perhaps that will not change the diagnosis. But I can assure you that early attention has excellent results. Changing your lifestyle to make it healthy is essential to improve symptoms.
My son turned two years old and a few days later he had his developmental evaluation. The doctors determined that he was on the spectrum. To this day, mentioning that is very painful for us as it would be for any parent. We left the appointment devastated, demoralized, but with the conviction that we would do everything in our power to make our son as normal as we could. We would help him move forward and that we would work tirelessly to achieve the goal.
Today, almost a year after the diagnosis, Milan has surprised his doctors and specialists with his great progress. As parents, we are very proud of Milan's progress. He is a happy child, constantly progressing, learning, and has overcome many of the symptoms that define his diagnosis thanks to the timely therapy, the intervention of us as parents, and of course the advances and research that we enjoy today that were not possible before.
I have created this initiative for you, father, to work with you from my experience on this beautiful path of raising a child with autism. To learn from him and learn from myself and everything I can do for him that I never imagined. This will be your place of discovery and learning, both personal and intellectual, so that you can lead your son on the best path and improve every day to be able to integrate into society properly, since this society has not adequately prepared itself for the integration of these wonderful beings.
Let's keep in touch!
Follow my blog and I will share with you in detail everything that I have applied with my son until I saw an incredible progress and improvement, managing to stand out with neurotypical children of his age. Every Tuesday we will share medical, scientific and informative information that could help you to ensure the evolution of your son and every Thursday I will tell you about my experience and what I applied with my son, as well as real stories, testimonies and experiences of people who were in my place, in your place, in our place, family members, friends, professionals and people within the autism spectrum who will guide you on this path to show you that you are not alone. At least I am here for you.
If anything worked for me on this journey with autism, it was that I decided to try everything to get my son back. That lost look that you see in your son, that look they have as if they weren't in this present, I was able to get it back in my son Milan with everything I applied.
As a reader, I want to thank you for getting here. We will make an incredible team and if you want to share your experience or interact with us, please write to us at info@autistapp.com and if you like we will share your story. I have a lot planned for you. Videos, Podcasts, personal growth, blogs, books, discoveries and even interacting with expert professionals. I want you to have everything that I had access to in my research, but in one place.
I'm here for you. Marian.
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