Jenni ‘JWoww’ Farley – The Hardships (And Joys) Of Raising A Special Needs Child – And What It Takes For A Parent To Successfully Raise One

Barbara Walter’s sister, Jackie, was developmentally disabled during the time that she was young, she was considered to be ‘regarded’. She, as well as people like her, couldn’t attend regular school, have friends, get a job, or marry. It was a completely different time, and it was exactly the reason why Barbara became the legendary female journalist that she became. Barbara had to make sure her sister was taken care of during a time where society didn’t see her as worthy.

I did all the things that society said people like me couldn’t do in spite of my disability. I got a University degree, I work, I have friends, I’m married and I have a child. Can I say that the world is different now than it was in the 70’s for people like myself? Yes, absolutely. But there are still people in our society who are still in the mindset of the 1970’s. My father-in-law is one of those people. When he found out that his son was dating a ‘cripple’, he was utterly ashamed of it. He’d never acknowledge or introduce me to any new person that had encountered me in his circle. It was as though I didn’t exist. When he continuously told my husband he shouldn’t be with someone like me, his arguments had to do with exactly how disabled people were viewed in the 70’s. He said I wouldn’t be able to get an education, I wouldn’t be able to work or have children. He said I wouldn’t be able to do any physical activities, like take hikes. He said I wouldn’t be able to take care of a household. He said my husband wouldn’t be able to live a normal, full life with me.

I’ve achieved everything my father-in-law said I wouldn’t be able to achieve and more. My husband DO have a good life together; a great life together. Don’t get it twisted, though. Nothing was ever for him or to prove anything to him. The world is filled with people like my father-in-law. I just live in a world where society tries to shame and belittle people like me. I have to work 10 times harder than an average person to prove all of them wrong. When I say people like me, I don’t just mean people with cerebral palsy, or just people with epilepsy or any other seizure disorder. But rather, I mean people with disabilities in general. That includes people with autism.

Now more than ever, we’re seeing a drastic rise in people being diagnosed with autism. In Canada, about 1 in 50 (2%) children and adolescents are diagnosed with Autism Spectrum Disorder (ASD). This rate has increased over time. ASD is more prevalent in males, with males being diagnosed about four times more frequently than females. Approximately half of all diagnoses occur before the age of five. Many individuals with ASD have other health conditions. For example, over two-thirds (68.7%) have another long-term health condition, with ADHD, learning disabilities, and anxiety being the most common, according to Canada’s official website. The Canadian Health Survey on Children and Youth states that more than three-quarters (73.3%) of those with ASD aged 2 to 17 experience difficulties in at least one functional domain, particularly in communication, adapting to change, and making friends. Further indications show that more than three-quarters (78.1%) of those with ASD attending school have special education needs. 

I have two cousins who have been diagnosed with autism. The severity and levels of the autism spectrum for both of them are different. One of them does struggle with anxiety and experiences severe panic attacks. No matter the case, they’re both very talented, skilled and smart young girls, and they’ll go so far in life; I’m sure of it. One just graduated high school with honours and has started working and interning. The other is a skilled artist. She can paint and draw like no other. For all I know, she could be the next Picasso.

The reason why we’re seeing such a high number of people, particularly kids, being diagnosed with autism isn’t because those in the previous generations didn’t have autism. But rather, it’s because we have so much more information about autism now; more than we ever did, even as recent as 3-5 years ago. We’re also seeing more and more people being diagnosed with autism later in their lives. Had they been diagnosed when they were children, their lives would’ve looked much different.

There’s so much shame and stigma, especially within the older generations, that comes with autism. This has created barriers to social participation, leading to difficulties in forming relationships and accessing support systems. Stigma can hinder the development of self-determination and autonomy, as individuals may feel pressured to conform to neurotypical expectations. It can discourage families from seeking a diagnosis for their autistic child due to fear of social judgment or shame, and therefore, it can increase the challenges faced by caregivers, leading to increased stress, anxiety, and emotional strain. I actually know someone close to my family whose son was diagnosed with autism, and she’s not telling her mother of this because of the stigma and shame she knows she’ll face if she tells her of this.

This doesn’t even mean that the older generation, and by that I mean our grandparents’ generation and before them, didn’t have autism. The history of it is actually pretty complex. In the “olden days,” what we now recognize as autism was not understood as a distinct condition and was often misdiagnosed or attributed to other factors like mental retardation, schizophrenia, or even demonic possession. While there’s evidence of individuals with autistic traits throughout history, the formal identification and study of autism as a spectrum disorder is a relatively recent development. To break things down more thoroughly:

Early Interpretations: 

• Pre-20th Century: Individuals exhibiting autistic traits, such as difficulties with social interaction, communication challenges, and repetitive behaviors, were often misunderstood. Some were institutionalized, while others lived within their communities, sometimes with the support of family and friends, or even begging for sustenance. 

• “The Wild Boy of Aveyron”: In the late 18th and early 19th centuries, the case of a boy found living in the wild in France (often referred to as the “Wild Boy of Aveyron”) sparked some early compassionate approaches to care, though these were not widely adopted. 
• Early 20th Century: The term “autism” was first introduced by Swiss psychiatrist Eugen Bleuler in 1911 to describe a symptom of schizophrenia, referring to a withdrawal into one’s inner world. This definition differed significantly from the modern understanding of autism. 

• 1930s-1940s: Hans Asperger in Austria and Leo Kanner in the US independently described conditions that would later be recognized as forms of autism. Asperger focused on individuals with social and communication challenges and restricted interests, while Kanner described “early infantile autism,” characterized by a lack of social interaction and communication difficulties from an early age. 

• Kanner’s Syndrome: Kanner’s work in 1943 led to the formal recognition of “early infantile autism” as a distinct condition. His work, while groundbreaking, also contributed to some negative perceptions, as professionals at the time often blamed “refrigerator mothers” for their children’s autism. 

Shifting Understanding: 

• Mid-20th Century: Many professionals believed autism was a psychological disorder, often attributing it to “refrigerator mothers” or a lack of emotional connection. This led to treatments like psychoanalysis and institutionalization, which are now considered harmful. 

• Late 20th Century: As research advanced, professionals began to understand that autism is a neurodevelopmental condition likely influenced by both genetic and environmental factors. The Asperger syndrome diagnosis was also formalized in the 1980s, further expanding the understanding of the spectrum. 

• 1970s-1990s: The passage of Public Law 94-142 in the US (and similar legislation in other countries) mandated education for children with disabilities, including those with autism, and promoted inclusion in mainstream education settings. 

• Late 20th and 21st Centuries: The understanding and acceptance of autism as a spectrum disorder has continued to evolve, with increased awareness of the diverse experiences and needs of autistic individuals. 

Jenni ‘JWoww’ Farley recently opened up about her son’s autism diagnosis, as well as being an autism parent. The reality star is mom to son Greyson, 9, and daughter Meilani, 10. On Kylie Kelce’s Not Gonna Lie podcast, Farley said of KultureCity, an organization that outfits sensory rooms that are at NFL stadiums, ‘I got involved because my son was diagnosed and I needed help. The irony is, there’s so many ironies in my life, but when my son got diagnosed with autism by six doctors, and I know at one point they really did not wanna diagnose him because they were scared s—less. Like, if we get this wrong, this girl’s all over television. And they got it right, but it’s nerve-wracking for everyone. But after I got his diagnosis, I did not know what to do besides he needs ABA. He needs ABA forty hours a week. He needs speech and OT and all this stuff.’

Farley felt overwhelmed with Grayson’s diagnosis, she was eager to get a second opinion. She flew with her son Greyson to Florida, but there was a delay on the way back, and she didn’t have TSA pre-check at the time. Farley said of the experience that happened 8 years ago as of the publishing of this blog entry, ‘And [Greyson] decided to not like that, and he tried to run through TSA. And when I tried to stop him, he ripped my glasses off and broke them, and he head butted me. And it was a very emotional and very real moment that I had with him. And through all his diagnosing, nobody explained to me sensory issues and sensory processing. And I had no idea, because he really wasn’t on a flight before that, that he didn’t like lines, and he didn’t like waiting, and he hated delays. And I remember seeing everybody’s phones go up, and everyone’s recording, JWoww with her son, who is throwing a tantrum in the airport, and I just remember crying. And I remember I finally get through TSA, and I’m bawling, and I have scratches, and my son’s crying, and I can’t get him in his car seat. And we’re having this moment, and I just wanna get on the plane or hide. So I was able to lock myself in a bathroom with him and get him figured out and lock him in his stroller. I was hog-tying him at one point just to calm him down. And we got on the plane, and he passed out. I remember all the looks, he just got diagnosed. I was [like] I don’t wanna talk about his diagnosis.’

After this very incident, Farley made a Facebook post on her personal account, and it was then that a friend recommended that she go to KultureCity, which gave her tools to use while she was flying with Greyson. She said, ‘They remade a whole bedroom of mine into a sensory room for Greyson. They explained to me his diagnosis in a way that the hospitals didn’t. That there are gonna be challenges with lights, and lines, and feeling overwhelmed, and that he might need headsets, or fidget spinners, and the hospitals don’t tell you that when they diagnose. And I just started crying, and I asked them, ‘Well, what can I do to be a part of your group? I wanna help.’’

What she’s done since is admirable. She saw a real problem and is now using her platform and doing everything she can to help other parents and kids in need who are in similar situations as she was in with her son. Farley said that her goal now is to make sure airports and TSA agents not only understand sensory problems and how to de-escalate them, but also to create sensory rooms at airports so other moms who have kids with autism can have a safe place. She didn’t have the tools she needed to help her son available during their time of need, so she’s making it her mission to make those tools available.

I have to say, I honestly can’t imagine being in Farley’s shoes at that moment. It’s hard enough being a special needs mom, but to be a special needs mom and have people know who you are, have them staring at you and filming you instead of even remotely trying to help is a feeling I can’t even begin to comprehend. The embarrassment and helplessness she might’ve felt at that moment would make me cry uncontrollably. It’s a stigma and shame surrounding autism that she previously spoke about, and she’s been tirelessly using her platform to promote the importance of open communication and education to break down barriers – whether it’s on social media, interview outlets, or otherwise; she always tries to use her platform for the good and spread awareness. 

In an Instagram post, Farley wrote of her son, ‘This is a new realm for us. One filled with tons of information and different theory’s of treatments. So grateful Grey chose me to be his mommy and @rogermathewsnj to be his daddy.’ All I could ever say to this was… YES. I wholeheartedly resonated with her words. As a parents; and as a mother, I related to them so much. I’m not the only one. After an episode of Jersey Shore: Family Vacation where she spoke of her son’s developmental delayed aired, her fans flooded her with comments of their own stories about how they’ve helped their own children through developmental delays. One comment read, ‘I cant thank you enough. To find out Greyson is ‘behind’ or ‘delayed’ crushed me… but only for a moment…’

Agreeing with Farley was the only thing I could do. Being a parent of a special needs child is probably the hardest thing one could ever do as a parent. But it’s also the most rewarding thing one could do as a parent. There’s so much pressure and constant worry that goes into it. Mostly, the worry is that you’ll fail your child. Every single decision you make for them until they reach the age of 18 will affect them for the rest of their lives. What if you make the wrong one? What if you did a particular service for them, such as speech therapy or ABA too soon, or too late? What if you chose the wrong person to provide that service for your child? These are just a few questions constantly on the minds of special needs parents. I can most certainly say that those questions were constantly on the minds of both my parents as parents of a child with cerebral palsy. And yes, they made some mistakes. They’d made some decisions that weren’t the right ones for me. But everything they’d ever done was done in the goodness of their hearts and more. Generally speaking, parents of children with special needs often face unique and complex challenges, including emotional strain, practical difficulties, and potential impacts on their relationships and well-being. However, they also experience immense love, pride, and resilience in navigating these experiences. To elaborate on the matter further:

Challenges

• Emotional and Mental Health:Many parents experience feelings of sadness, grief, anxiety, and isolation, as well as guilt and shame. They may also face depression and hopelessness. 

• Practical Difficulties: These can include navigating complex medical appointments, dealing with paperwork, and adjusting work schedules or careers to accommodate their child’s needs. 

• Relationship Strain: The demands of caring for a special needs child can strain relationships with spouses, partners, and other children. 

• Social Isolation: Parents may feel alone in their experiences and struggle to find support networks. 

Positive Aspects and Coping Strategies: 

• Love and Joy: Despite the challenges, parents often experience deep love for their child and find joy in their unique strengths and accomplishments. 

• Finding Support: Connecting with other parents of children with special needs, seeking professional help, and building strong support networks are crucial for coping. 

• Self-Care: Prioritizing self-care and practicing self-compassion can help parents manage stress and maintain their own well-being. 

• Advocacy and Empowerment: Parents learn to advocate for their child’s needs and become experts in navigating systems and resources. 

• Resilience: Parents of children with special needs often develop remarkable resilience and strength in the face of adversity. 

How to Support Parents: 

• Offer practical help: Simple acts of kindness, like offering to run errands, babysit, or provide a meal, can make a big difference. 

• Educate yourself: Learn about the child’s specific condition and the challenges their family faces. 

• Be a friend: Offer a listening ear and be present without judgment. 

• Include them: Invite them to social events and activities, and be mindful of their child’s needs. 

• Provide grace and understanding: Recognize that parenting a child with special needs is incredibly demanding, and be patient and supportive. 

Resources: 

• Local and national organizations: Organizations like the National Down Syndrome Society, The Arc, and the CDC offer support, information, and resources. 

• Parent support groups: Connecting with other parents can provide invaluable support and understanding. 

• Counselling and therapy: Seeking professional help can provide parents with tools and strategies for coping with the challenges of raising a special needs child.

Perhaps the most selfish and hurtful thing anyone’s ever said to me was that I was a bad parent, followed by the person endlessly telling me how to do it the ‘right way’, as if there is one to begin with. It was my husband’s stepmother. My son was a year old at the time. We were sitting on her patio. He wasn’t sitting still and roaming around like crazy – as any toddler would. She was getting frustrated, became nasty and hostile towards me and my husband. She wouldn’t shut the f*ck up about what sh*tty parents husband and I were. She went on to speak to my son like a complete fool – screaming, yelling, pointing fingers at him. And when we told her that he was just being a toddler and asked her to stop telling us how to parent him, she said it was her her house and her rules, and therefore she could do what she wanted and we had to deal with it. I was ready to get aggressive with her; so I left her premise.

At that moment, I felt absolutely helpless. It was as though I couldn’t do anything right. I refused to see her after this, and there was absolutely no chance I’d allow her to ever be anywhere near my son – unless she took responsibility for her actions and apologized. My parents and mother-in-law, who know exactly what had happened, have all agreed with me and said that she owed me an apology. She crossed boundaries before, but never like this. She hurt me before, but never like this. Nothing in my life ever hurt than someone telling me that I was a bad mother to my child. Mt husband told her to apologize thereafter. She called me, but the apology was fake, and even worse than what she apologized for to begin with. My father-in-law did some pretty shady, bad things to try to manipulate and end my relationship with my husband throughout the years. He treated me like garbage. But his actions were nothing compared to his second wife’s words to me. And he, at least, would never apologize for anything. No apology is better than a fake apology, especially the one I was given. It was funny that she even felt she had the right to say those things to me and my husband. Not like she ever, since she found out I was pregnant, as well as since my son was born, ever helped us in any way – financial, emotional, or otherwise – to even have the right to open her mouth on our parenting abilities.

Hearing my husband’s stepmother’s words made me question everything about my capabilities as a mother. I even began questioning whether I had enough in me to be a mother to my son, as well as whether I made the right decision to become a mother to begin with. But then, my son’s first words to me were ‘I love you,’ and they were said to me while making eye contact with me and holding my hand. It was the most beautiful, heartwarming thing. He was so proud of himself. I could see he was trying so hard to say something to me for at least a week, and then he finally did. And it was at that very moment that I realized that the only person whose opinion matters on my mothering capabilities was my son’s.

My son isn’t perfect by any means. No one, except maybe my husband’s stepmother, expects him to be. One thing about my boy is loud and clear – he always tries his best. And this is very much good enough for me. He’s two and a half. He still doesn’t talk much. He has his share of meltdowns and behavioural trait. He still has his quirks. Nevertheless, he’s a great kid, and I’ll always love and support him – no matter what. I’ll always do my best at providing him the best care to support his needs, no matter what these might be for him.

Just a few days ago, during our speech therapy session, my son randomly came up to me and gave me a hug. He didn’t have to do that. No one told him to do that. He just did it simply because he wanted to; because that was his way of showing me his love, affection and appreciation for me. As hard as being a special needs parent can be at times, it’s moments like this that make it all worth it. And let me tell you, being a special needs parent is NO JOKE. IRS hard being a parent in general. But being a parent of a special needs child takes a whole other level of skill, responsibility and commitment. I have an entirely new appreciation for both my parents now, but even more so for my mom. Sometimes, all I want to do is stay in the bathroom for hours and just cry. But no matter how hard motherhood might get, I know that I’ll NEVER give up on my son. I’ll NEVER let him down. I’ll NEVER stop doing what I feel is best for him.

I might’ve not gotten the full support through my struggle of parenting my child, but I’ve had the support of an entire community, and I couldn’t be more grateful for that. I won’t ever dwell on what I’d been given. Instead, I’m celebrating. I’m celebrating my son’s uniqueness, accomplishments and strength. I learn new things about him every single day. I foster a sense of belonging, acceptance, and empathy, both at home and in the wider community. I take care of myself and my own well-being, and I make sure he sees that. I advocate for my child. I’m his voice in ensuring he gets the best care possible. I focus on positive reinforcement and understanding underlying causes of behavior. 

I recently saw a quote by Kerry Magro that read, ‘Autism is not a tragedy. Ignorance is a tragedy.’ This exact quote could be directed for my husband’s stepmother. I know in my heart that I’m a good mom. I’m not perfect, just like my son isn’t. But I try my best to be the best version of myself that I can be – for him. He’s relying on me, and I know that I can be that for him. I know that I can help him become the best version of himself that he’s already becoming. He’s thriving. His dad and I couldn’t be prouder of him, and we’re so excited to see where life will take him. Our son might be different, but he’s no less of a person than any other. It takes a village to raise a child, but it takes a child with autism to raise the consciousness of the village – as told by Elaine Hall. Raising a child doesn’t come with a Manuel, let alone raising a special needs child. Instead, it comes with a family who will never give up. Our son, our beautiful boy, will always know how loved and accepted he is – no matter what. And finally, let me make one thing clear: this isn’t, by any means, a tragedy. It’s not a burden or a curse. It’s a journey.