Shouting Joel’s Worth

We’re FAMOUS!

Just kidding! But we did make our local Telemundo news station… at 10pm… when no one’s watching…

I was called by one of the reporters who also works as a PCA for one of our friends who also has down syndrome. She expressed that she wanted to do a story on us because she spends a lot of time with our mutual friend out in the community and at “special needs” events and has never seen another Hispanic. So her question was why? I think it is evident that there are still people who are ashamed of disability and/or have a stigma that just can’t be shaken. This is especially true about the Hispanic community. From my experience, it’s not often talked about.

So, she was told about us and after viewing our blog she decided we’d make a good interview. When she called she said she wanted us to share how life with Joel is and share about things Joel is involved. Basically wanting us to encourage other Hispanic families to not be ashamed and to show them there is so much they could be doing. she ending sending me questions about my role as a sibling (specifically in terms of his education,)  why I made a blog, what my reaction was to find out he has ds, and what I’d like the Hispanic community to know.

The idea was to get the whole family. My parents immediately said no and my sister was to busy. I came home the day of the interview and my parents were definitely dressed like they were going to be interviewed but kept insisting that they were not going to participate. After my interview was over the interviewer asked if they were anything else I wanted to share if I felt like I left anything out. To this, my dad had a lot of input. So the interviewer asked him a few more times if my parents wanted to be interviewed. They finally gave in. It was very cute, I felt like a proud mama.

My parents rarely talk about important stuff outside of like church related things. I believe I’ve expressed in previous posts my disappointment about my parents never really explaining down syndrome to me and how I have sort of resented their silence at comments others have made about down syndrome. Again, I blame this on their upbringing, being from another country and all that. But I was so proud that they finally decided to speak up. (not saying that they never defended Joel or never spoke up about down syndrome, but from my perspective, I never witnessed it enough.)

This was a first for me. To see my parents vulnerably speaking about how hard it was at first. I never heard Joels’ diagnosis story until now. My dad always says Joel is what saved him. I may share that story later on…

Joel’s diagnosis story:

My mother is a quiet one. When I’ve asked her questions about this, I get one-worded responses. I can’t get mad because I am exactly the same… Just about different things. She and I see down syndrome differently. It’s something I’ve always known. But for her, Down syndrome came to her as a surprise, and not necessarily a good at the time. Something she probably thought would never change her life and affect her every day.

She said her OBGYN was concerned because Joel was too small and thought there be something going on. They wanted to an amniocentesis. My mom thought about it and talked to a friend who advised her not to because she was afraid it could lead to a miscarriage. She told her that it would not matter how he came or what he came with because she knew my mom would care for him and love him either way.  So my mom did not go for it.

When he was born they told her immediately. Although she did not get the formal diagnosis until he was three months. (I know this from snooping old paperwork.)  She said he didn’t cry and weighed 2 pounds. He was so tiny and fragile. She admitted to feeling I guess anguished would be the best translation of the word she used in Spanish. She went on to say it was new and confusing. Both my parents reflected on how hard it was for them especially not really understanding the English completely. My dad also admitted they rejected some help and resources at first not really knowing why; could’ve been pride or refusing to accept it. I’m so glad they ended up in the interview as well.

Anyway,  a lot of the interview was cutoff of course. I like the parts where I shared the most important things did not make it but that’s okay. Hopefully, we were able to spread awareness for down syndrome and encourage those in the Hispanic community to branch out and look for support as well as getting involved in the community. The key take away was to not hide or be ashamed of anyone in the family with down syndrome and to look for help and support because it’s out there.

Here’s the video, it doesn’t get to us until like minute 11:45ish:

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