A Sister's Love is Unconditional, No Matter the Diagnosis (Autism and Down Syndrome)

My name is Analia and my brother Eli has a dual diagnosis of Down Syndrome and autism.

The doctors suspected the Eli had Down Syndrome after my mom’s triple marker, and this was back before the NIPT. They sent her for an amnio and the amnio came back negative, so my parents weren’t worried anymore. When Eli was born they found out he actually did have Down Syndrome, so it was still a shock to my parents. I was only 6 when Eli was born, and my younger sister was 4. We have one other younger brother who is 11 months younger than Eli. I don’t really remember ever talking to my mom about how Eli had DS. I’ve just grown up with this being normal for me.

Since Eli was a baby he has rocked back and forth. He had a very hard time learning to walk and talk. He is still mainly non-verbal. He started stimming when he started school. His stim is a ribbon or strap of some kind. He calls it his “shmake” (snake). He is 15 now, a “sophomore” in high school. He still stims and is mainly non-verbal, like I said before. He says simple phrases we have taught him throughout his life. For example, “I want…” then he would say whatever he wants, whether it be Barney, Spongebob, the Wiggles, or Grandma, things like that. He also asks to eat and more and more recently he has started to ask for specific foods which is really exciting for us to still see so much growth. We started signing with him just some basic baby/household signs when he was young to help with communicating because his speech has never been very good.

I mentioned before that he had a hard time learning to walk. He actually learned to swim before he could walk. He LOVES the pool! He has super low muscle tone which is typical for a child with DS, but it was so bad it hindered him from learning to walk. We ended up needing a new physical therapist because of insurance reasons and that is when she introduced new shoe inserts for him! Shortly after that he began walking (at age 7…)! He still has a hard time walking, and he doesn’t enjoy it all that much.

Autism sucks sometimes, Eli gets more and more frustrated as he gets older because he can’t express and communicate to us what he wants or what he is feeling. We usually can guess what he wants and now he mostly can do it for himself, but a lot of the major things he needs some help with. Our family is extremely close, and I think that is one way we are all able to deal with it. Our cousins say that we are all more like brothers and sisters than cousins. We all grew up together, and we are all super close in age. Having that extra support from family really helps all of us get through the harder days.

Autism has also taught us some extreme patience. We waited 15 years to hear Eli say “I love…” and our name. He has said “I love you” when prompted for years now, but to hear him say “I love Ana,” that is something that I had been waiting for and never knew if I would ever even hear. There are a lot of things that I am so uncertain about, mainly what goals he will reach and he won’t reach. But, as he does reach new goal after new goal, it reminds us over and over again that we can never stop trying to teach him.

He has made such a positive impact on my life; I can’t begin to explain the blessings Eli has brought into my life. He is the reason I am who I am, and I can’t imagine a life without him in it that I could ever be satisfied in. The light and life he brings into my family is unreal. It is 100% a supernatural gift from God. It is hard for a lot of people to see how someone like Eli could have a happy positive impact on a person’s life, but I think it would be hard to live a life with a sibling with special needs and not be positively impacted. You learn so much about who you are as a person, and you are exposed to this amazing kind of love for your entire life.

DS and autism can be super scary especially paired together, but it becomes normal really quickly. And even sooner after that, you can’t imagine a life without it. There is a common thought that people with DS are always happy,,, That is not even close to being true. Especially in our case. Eli definitely has a wide range of emotion, and he definitely does not have trouble expressing them. I will say though, when Eli is happy, it is super infectious, and I can see why people would think, “if he is this happy now, I can’t imagine him ever being upset.”

I’m Analia, I am the oldest of four living in Florida, and my family has always been a very big part of my life. My favorite place to be is on the beach around 9 in the morning, with the morning sun and while it is still relatively clear. But having a brother with DS is really what makes me who I am, and introduced an amazing community into my life. It is because of all these amazing people that I have met and created relationships with that I know what and who I want to be for the rest of my life.