See My Special Needs Child, but Don’t Ignore Me

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Being the parent of a child with special needs isn’t easy. There are days we get up not feeling well ourselves but have to put how we are feeling aside in order to care for our children. Caring for our children is our duty as their parents, but we want people to see us for who we are outside of being a caregiver. We are often looked at as being strong because of the things we have to do daily as caregivers. 

But we aren’t always strong.

There are times we need people to step in and be strong people for us. We don’t always have it together; most of our days consist of just going with the flow. I know for me if one thing is off, that’s how my entire day goes sometimes. The hardest part about it is that majority of the time how I feel goes unnoticed. 

I remember one day I called one of Jaylen’s favorite restaurants. As I was placing my order the lady stopped me and said, “Are you Jaylen’s mom?” I’m often referred to as “Jaylen’s mom.” As if I no longer have a name. And although I’m happy people acknowledge my son, I still want to be acknowledged as my own person too.

I blame myself for being looked at “as being strong.” I never intended for people to view me that way. My mom taught me to be his voice. She always told me I had to stand up for whatever I felt was right for Jaylen, and that’s all I’ve ever known to do. And I don’t just do it for Jaylen, I do it for my girls as well.

The truth is that other people didn’t just forget me, I forgot me too. I only saw the mother in me, the wife in me, the sister in me, the friend in me. I didn’t see myself in me, so how did I expect people to see in me what I didn’t see in myself?

I portrayed what I wanted myself to seem like. It was all those things, including being strong. But I am not always strong, it’s just that sometimes I don’t have a choice. I can’t let life knock me down, especially as a caregiver. And while I look like just a caregiver to everyone else, there’s so much more that makes up who I am. 

What has your experience been like as the mom of a child with special needs?

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Marissa was born in Charleston, South Carolina on Sept, 27, 1986 to James Sweat and the late Tracy Graham. She is the youngest girl of six, two sisters and three brothers. She grew up in Holly Hill, and graduated from Holly Hill Roberts High. Marissa furthered her education at Midlands Technical College, receiving a certificate in Early Childhood Education in 2017 and an associate degree in Early Childhood Education in 2018. She has been married for seven years to her husband Terence Evans. Together they have three children (Jaylen, Jada and Ny’Asia Evans). Her oldest and only boy, Jaylen, has cerebral palsy, epilepsy, and autism. Marissa and her husband are also the founders of the movement #Dontstare which is to raise awareness to how rude staring can be.

1 COMMENT

  1. That’s just who you are. You yourself chose to be someone’s Mother/Wife, and now say that you want to be someone other than being a Mother or a Mother of a Child with Disabilities. You willingly gave that up when you yourself decided that you wanted Children and a Family. That’s not a decision you can easily take back whenever the mood strikes. You accepted the commitment to Children you decided to bring into the world, so you also willingly accept the full responsibility for WHATEVER comes along with that Title, disabled Children or not. You yourself wanted a Family and if that’s what ends up defining who you are as a Person, so be it. After all, You asked for all of it, that was a voluntary choice. Of your own Volition, You decided to step up to the plate and create a Family for yourself which is your perfect right to do so. Far be it from anyone to dictate what you should do with your own Life. That’s NO ONE’S place to do so, EVER. You yourself also have the responsibility and obligation to the family you created whether you’re defined by it or not.

    I myself am never defined by any relationship, after all, I chose never to take on that responsibility. I didn’t sign up and never signed up to be anyone’s Mother nor Wife so I can’t be defined by that. I never wanted that commitment nor obligation. It was the best decision of my Life and has paid off more dividends than I could’ve ever imagined…🙃

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