How This Mom Of Three Is Breaking The Stigma of "Special Needs"
Faith Jablonski Is Using Social Media to Normalize a Medically Complex Life.
By PJ Feinstein
Faith Jablonski was 23 when she first saw a g-tube in person. She couldn’t have imagined that a year and a half later, her oldest son, Mathias, would be diagnosed with Smith Lemli Opitz Syndrome -- and g-tubes would become part of her everyday life.
In the beginning, Faith only felt comfortable sharing Mathias’s feeding journey on social media, not his official diagnosis. “It wasn’t too long ago that medically complex or atypical people were put in homes or facilities and treated like they were less than human. Even the verbiage used to describe people with Smith Lemli Opitz Syndrome is outdated and offensive,” she says.
But then the stay-at-home mom of three realized that she could help break the stigma related to special needs by using social media to normalize their medically complex life. “I think a lot of people don’t know how to act around anyone who is atypical and exposure can help change that,” she says. “I think that introducing as many people to Mathias as possible can make a difference!”
Faith believes that Mathias has the power to change the lives of others -- and that they can do the same for him. After parents explain to their kids that Mathias eats through his belly and sometimes pushes because he doesn’t know how to talk, children “don’t think he’s weird or try to avoid him. They want to connect with him,” says Faith. “And they love him.”
However, not everything that Faith shares online is about Smith Lemli Opitz Syndrome. “I don’t want my whole presence on social media to be just Mathias,” she says. Nor do she and her husband, Lucas, want their son’s special needs to limit what they can do as a family.
“Yes, sometimes we have to leave early from places. Or we don’t even make it out the door. But we still travel a lot and still go out a lot as a family!” says Faith. “We prep so that we can handle whatever gets thrown at us. That usually means feeding Mathias in public via his g-tube or explaining to people that he’s nonverbal even though he’s almost three.”
When did you learn about Mathias’s special needs? What was your first reaction?
We struggled with Mathias from the day he was born because he lost weight very quickly, didn’t seem to be hungry, and couldn’t latch. It took eight months of GI appointments but eventually he was tested by the inpatient neurology department at Massachusetts General Hospital for Smith Lemli Opitz Syndrome (SLOS), a rare genetic disorder caused by a mutation of the DHCR7 gene in the chain that produces cholesterol.
Getting a diagnosis changed our life. While on the one hand it validated our feeding struggles since most infants with SLOS are born without a hunger drive, it was also the end of any hope of a “normal” life. I remember walking out of the neurologist’s office after his diagnosis struggling to hold back tears and sobbed the whole drive home.
I should note that since his disorder is super rare, the information from the internet that his neurologist handed to me used words like “mental retardation” and “physical deformities.” In a way, it was the death of all of my hopes for my child. Maybe that sounds terrible. But it’s hard to go from “my child has feeding problems” to “my child is going to live with me for the rest of his life.”
We were told that Mathias was on the mild end of the spectrum because he didn’t have the physical problems most children born with SLOS have. All of his organs are functioning well and his cholesterol levels aren’t terrible. But we had little to no information about what that meant. I felt like the answer I yearned for wasn’t an answer at all, and I had to grieve the loss of the child who wouldn’t be what I had hoped he would be or have the life I wanted him to have. And that it was necessary for me to move on and to learn how to advocate and be strong and positive for him.
What's the most challenging thing about raising a child with special needs?
Patience. Having patience is probably the most challenging thing, both with Mathias and with myself. Mathias has always had obsessive compulsive tendencies and one of the compulsions usually has to do with making noise - right now his compulsion is to bang on everything like a drum. Hearing him banging on the washing machine or taking a toy metal pan and banging it on the tile can drive me nuts. And it’s pretty constant, it happens a LOT.
For a while we were dealing with some aggressive behavior towards his sister (attention seeking behavior, not “true” aggression) and that was hard to deal with too. And then I feel guilty for losing my patience with him when really I’m learning too. This is a journey for both of us.
What's one amazing thing you wish people knew about Mathias?
He is the most affectionate person I’ve ever met! He loves hugs and kisses. Sometimes he has a hard time with strangers, and other times he will kiss random people’s legs when we’re out of the house … he’s really got the sweetest disposition, and he loves cuddles!
What are your favorite apps? What are Mathias’s favorites?
Mathias doesn’t get phone or iPad time! I’m on Instagram a lot, and I use Instacart pretty frequently which is a grocery delivery app! Going to the supermarket with a special needs toddler plus two other babies is not something I enjoy doing.
Where is your family's happy place?
The couch because everyone loves cuddles. And the park. My kids love the park, and it’s amazing because Mathias used to hate the park. It was too much sensory overload for him! Now he’s just super excited to be able to go down the slide a hundred times.
What self-care rituals help keep you sane?
Baking keeps me sane! I’ve always felt that food is a love language and baking for anyone - including myself - is pretty fulfilling for me. Also, getting dressed and putting makeup on help me feel like I’m put together and that I’m doing something for myself that’s just for me since most days I’m stuck at home while Mathias has therapy!
Who are your 3 favorite moms to follow on Instagram?
I love Kelsey Ohs (@afamilyofohs) - her daughter Maddison has atypical cerebral palsy and a g-tube, and she’s such a great resource for special needs parents! She’s also super uplifting.
Another special needs mom I love is Jessica Lamb (@skiptomyluca) - she shares tons of parenting advice for parents of both typical and atypical children!
I also really love following Elyse Dean (@elysendean) - she’s not a special needs mom but she is super funny and down to earth, and I love her aesthetic!
What TV show are you currently obsessed with?
I wouldn’t say obsessed, but I am very invested in Game of Thrones.
What 5 words best describe you?
I’d say that I’m understanding, compassionate, perseverant, advocating, and hard-working. I’m a 2 on the enneagram and that’s a very accurate description of my personality.
What advice would you give a new special needs mom?
Make friends and accept help. Meeting people who had special needs kids made a world of difference for me, and they were more help than doctors or Google. And learning to accept that you can’t do everything and to say yes when people offer help is so important!