Thank You to the Best Aunt and Uncle

After our son Emmett’s official Fragile X diagnosis we told all our family members about it and posted about it on social media. Everyone told us or wrote to us telling us how much they care and how it will be OK and if we needed anything to let them know.

But after the Fragile X diagnosis their was a quiet pause from these individuals. No one says anything or asks us about Emmett.

They don’t ask about the multiple diagnosis’ he received after the Fragile X diagnosis. I have often wondered if they really do care about my son.

Do they care to know that he was also diagnosed with Severe Autism, Epilepsy, Sensory processing disorder, and that he is nonverbal?

When a handful of people do ask us one or two questions, I feel as if they only want to hear the good stuff. Because when I mention all the meltdowns Emmett has or how difficult our life is becoming, I get the pity look or the change in conversation.

No one wants to hear the lack of sleep I have, or the fact that my life is 50 times more stressful than their lives.

I feel like I shouldn’t say anything about special needs life because it ends every conversation.  But all these thoughts and feelings go away when Nino and Nina, my children’s aunt and uncle, are around.

I can go on and on about autism and they will listen no matter how many times I probably repeat myself. I never need to let them know anything because they are the ones asking and helping.

They are my daughter Amaya and Emmett’s god parents. My kids call them Nino and Nina.

I would like to thank them for being so involved. Nina is the best aunt and a second mom to my kids, and Nino is also an amazing caring and thoughtful uncle.

Although I probably never tell them in person how much I appreciate all the little and big things they do for our family, I wanted to write them a letter expressing my gratitude and feelings.

Nina always calls. She never waits for me to call her. Nina remembers our crazy schedules, appointments, doctors, therapies, school issues etc. Nina has become an advocate for my kids.

I honestly think she researches all the therapies and medication and services Emmett receives, or she even writes them down.

She sends me the latest research, tells me all about other autism parents and their struggles, sends me videos of useful information. Nina is not afraid to tell me the truth about my kids either.

I feel like many people that talk to me are afraid to ask questions or think that it hurts me to hear what they have to say about autism or special needs kids, but in reality I hate when people don’t just ask.

Nina doesn’t do that. She tells me like it is. Nina is always my plan A, B,C, and sometimes D. She never says no even if she has something to do she will literally sacrifice her  own needs.

She knows I need help before I even ask.

After my Emmett’s multiple diagnosis’, she became my go to person to talk with, and express all my frustrations to. She always makes time for us.

Nina is our super hero. Our conversations are probably 90 percent about my kids. She is selfless and the most caring human being.

Nina knows that helping us does not mean just saying you’re going to be there it means actually helping.

Nina never hangs up the phone when Emmett is screaming and having full blown meltdowns. After every specialists and doctor visit she always calls and asks how it went. Nina is willing to go out in public and accommodate all my kids needs or make people accommodate.

Nino doesn’t stay far behind on the praises. Nino is always their to bail us out of trouble.

I recall a few months ago when I needed to take Amaya to the hospital because she was sick with a kidney infection and needed to be hospitalized. He jumped in and took care of Emmett no questions asked.

Emmett had Speech therapy and he didn’t care that it was a 45 minutes drive or that he had never been there. He also didn’t care that Emmett might probably have a few meltdowns, or that he had no clue where this place was and that he was most likely going to get lost.

I loved the fact that he treats Emmett just like any other kid. He doesn’t look scared, or afraid of all the stuff Emmett has going on. Many times I feel like people are afraid of all of Emmett’s medications, therapies, and feel overwhelmed.

Nino is always willing to take on a challenge. He accommodates Emmett’s needs.

He respects Emmett’s boundaries, and that although he does have a disability he is still a kid like everyone else.

Nina and Nino are willing to let my kids in their home and accommodate their dietary restrictions. They meet Emmett’s sensory needs and let Emmett own their house so I can sit for a few moments without having to constantly chase Emmett.

Nino and Nina also help out with our other two children…the exact same way they do for Emmett.

I will forever be thankful for all they do each and every day for our family.

Written by, Erika of Our FragileXLife

I’m Erika my fiance Juan and I have 3 amazing kids. Our son Emmett who is 3 years old. My daughter Amaya who is 7 years old, and my step-son Jj. Emmett was diagnosis with Severe Autism, Fragile X Syndrome, Epilepsy, Sensory Processing Disorder, and Intellectual disability, Emmett is also nonverbal. Amaya was also diagnose with Fragile X Syndrome she is on the high function end of Fragile X Syndrome. Receiving all of these diagnosis was so difficult. The past 3 years have probably been the hardest years of our entire life. You can read more about us and our story at our blog https://www.ourfragilexlife.com

(Editor’s Note: This article was provided by Erika and is part of Cooper’s, ‘I’m Thankful For You’ Campaign.)

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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