Special Needs Spotlight || Diego

Hi guys, Miggy here–I just wanted to share a quick note that today’s special needs spotlight was made possible by a woman named Andrea who was the translator between Alney and myself. Andrea has graciously offered to act as a translator for any other Spanish speakers out there who would like to participate, but don’t feel comfortable writing and responding in English. Isn’t that wonderful? I always love featuring spotlights from a unique perspective and featuring people and families from different countries and cultures certainly falls into that category. Enjoy!

Hi! I’m Alney. A mom, a publicist, and a very blessed mama of one beautiful fighter, Diego (7 years old). We live in Caracas, Venezuela in an apartment close to the city. I love coffee, reading, dancing, and spend my days singing Trova Cubana to Diego who is undiagnosed at this time. You can follow along on our adventures on my Instagram at @elcaminodediego.

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Miggy: Welcome Alney! Thank you so much for being here today and sharing your sweet boy with us all the way from Venezuela. Let’s start at the beginning, when did you first become aware that something wasn’t right with your son? Was it during pregnancy, shortly after birth or a while after that? What were some of the first signs and symptoms? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Alney: I had a very normal pregnancy, everything was under control and my OB did not have any concerns, however, I started leaking some amniotic fluids around the end of the 6th month, from that moment I was put on bed rest and my OB was checking very closely the rest of the pregnancy. My beautiful Diego was born at 36 weeks, he had a great weight and size, but since day one he struggled with breathing outside of the womb so he was taken to the NICU and stayed there for many days connected to a respirator. It was the hardest thing to leave the hospital and go home without my baby but thankfully he was a fighter and he overcome that chapter.

Then I remember going to the weekly then monthly check-ups with our pediatrician and I kept asking about Diego’s head. People always mentioned on those first months about its size and his pediatrician kept telling me that it was nothing to worry about it, percentiles are not important. Then he started getting sick and after many tests we discovered he was lactose intolerant. He kept growing and his development was somehow delayed. He walked late and was not speaking that much so in one pre-surgery appointment (he suffered from hernias since he was a baby) the surgeon suggested to me to take him to a neurologist because she could see his social skills were not right. Of course I made the arrangements and in our first appointment with the specialist I was told about Hunter syndrome. It was the first time I heard the word mucopolysaccharidosis

Diego had a test to discard Hunter syndrome, which is the second of seventh lysosomal storage diseases. It was around Christmas time and I remember I spent the whole month learning about those diseases. I was devastated since all of them are degenerative. A month later we got the NEGATIVE back to our luck. This test was done in Argentina since in Venezuela it was not possible. 8 months after, I tried to stay away from hospitals and doctors but Diego started to have unusual behaviors–he was not playing with cars, his interests were different and he started hurting himself constantly on his head. He then was diagnosed with Autism and some developmental delay. He was 2 years old. Autism was something completely new for me so I had to research a lot of it.

It was SO hard to accept that diagnose, is not easy to any parent but I remember going to different specialist trying to heard what my heart couldn’t process. That first diagnosis knocks you down, beats you down, and it steals all your dreams. It has been so many years of learning and amazing experiences with Diego that has made me a better person. The day I received those news, not only I got a diagnose, today I understand that, what happened that day is God opened the door of a new world to me. A world full of noble people, acceptance, without prejudices, labels, a world without a past because you learn to live in the present, definitely a world full of smiles and music. God touched my door and gave me a master, a beautiful angel called Diego.

Miggy: I know that as this point your son doesn’t have an official diagnosis but can you tell us about his needs and explain how they affect your day-to-day life?

Alney: His needs and attentions increase with his degeneration, in the last 8 months Diego almost has stopped speaking, before he used to repeat words or sing songs all day long, now is very strange when I hear his voice, he forgot how things I tried so hard to teach him like taking his shoes off or taking his clothes off. He can’t do it anymore. Diego is 7 years old in chronological age but he acts like a baby, he does not know danger or fear so is easy for him to get into accidents, so I have to be in and out for work constantly to make sure he gets the attention he needs.

Miggy: Having a child with special needs carries can carry a lot of stigma depending on where you live in the world. Can you tell us what it’s like having a child with special needs in Venezuela? Are people with disabilities treated differently? Do you have good access to medical care or other programs for support?

Alney: Having a child with special needs in Venezuela is a huge adventure. Although in the last few years people have learn more about disabled people when you deal with it daily, you can see we have an enormous job to do in terms of educating our country. Schools for special kids needs are almost 0 and they don’t have the right team of teachers, doctors or professionals. In terms of healthcare, many children with special needs are taken out to another countries on a daily basis because here there is no medicine or technology for it, like our case. If you can’t be diagnosed you can’t get a proper treatment either. There is so many cases of kids who sadly die for lacking of resources. Our country has a serious healthcare crisis.

Miggy: What are the biggest worries you face for your son? And on the flip side, what are your hopes and dreams for him?

Alney: I worried that his quality of life is decreasing so fast, that I am terrified to think that sometime soon, he won’t even know who I am. I pray that once we get a final diagnose, Diego can start receiving the proper treatment and he can sing again, I love my son just the way he is and in no way I am hoping some doctor could change his condition, I just want to make sure he is happy, slow as much as I can his degeneration, I want him to look at me, to smile at me, to love me as I love him. My dream is to make of his life a song, take him around the world, take him to the beach, to eat outside, I dream we can have an assistance dog sometime too. I just want to give him back all the happiness he has gave me.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Alney: Diego is constantly getting into troubles and making disasters at home. Sometimes I would clean the whole apartment and five minutes after he will take all the trash and put it everywhere. If I would not laugh about those things, my life probably will be completely chaotic.

Miggy: How can people best approach or respond to your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Alney: Diego is sweet and receptive with the people that shows the same to him. There is some people that talk to him waiting for an immediate answer so I have to step in and answer for him. Generally, it breaks my heart to see people questioning his actions or conducts without thinking there could be a reason for it. I wish people were less judgmental when they approach him. Diego is a child of light, he does not know evil.

Miggy: Lastly, what is the biggest lesson you’ve learned since becoming a special needs mom?

Alney: I learn to give importance only to the really important things, I learned I am a much stronger woman than I ever thought. I learn to grow my patience to infinite levels, to not worry about minor things, to laugh in stressful situations. I learned that to me there is nothing more valuable that his smile, I learned sometimes I am the one who learns and others the one who teaches, I learned to let go, the cold, the bad, the bad looks, the comments and opinions of strangers. I learned to open my heart to only the important things, to listen but the most important thing is I learned how to love. Without reasons, without reserves, without labels. I learned to learn.

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Thank you so much Alney! That last line really stayed with me, “I learned to learn.” YES. Having a child with special needs can really open your eyes to a world that existed all around you, but you never saw it before. You must be open to learning how to learn because so much of what you thought you knew will go right out the window. I love Alney’s list of the things she has learned, namely “to give importance only to the really important things” and “I am a much stronger woman than I ever thought.” I hope you are able to get Diego the healthcare he needs for you both to continue thriving! You are a true warrior mama and you are lucky to have each other. Please give your sweet boy a hug from me.

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. And if you emailed me recently and still haven’t heard back from me, please be patient–I will respond I promise!

Have a great weekend!

XO,

Miggy