Limiting Beliefs

“[Nathan] was a micro preemie, born at 26 weeks weighing 1 pound 10 ounces. He had necrotizing enterocolitis where part of his intestines died. So his stomach shut down and he also had a grade IV brain bleed. He had a craniotomy at 3 days old. He was in the NICU for 3 months and he finally got to come home after they told us he wouldn’t walk or talk or do any of the things and that we should sign a DNR.”

Lisa tells her son, Nathan’s, story and how he had all odds against him when he was born, but is now going to be 13 years old and doing all of the things doctors told them he never would… 

“He’s not a typical child and he’s also not as severe with his Cerebral Palsy so he’s in a gray area. He looks like he can do everything but he can’t and a lot of things aren’t offered for him.” 

Nathan’s story is unique, but these challenges he and his family face aren’t. 

There are millions of families facing the same challenges each and every day. 

It starts with awareness… and then we can be part of the change.

Having To Find Resources On Your Own

“There’s not a book that we can open and tell us all the opportunities that there are so I don’t think we’ll ever feel like we’re done looking… 

…She’s an amazing person, but that’s not why she deserves the best from the world. Every child deserves that.” 

Kate tells her story with her daughter, Allie, and how challenging it has been throughout her entire life to find the resources Allie needs to help her thrive. 

She explains that she had to find everything out on her own and had she realized there was more out there for her, she could have helped her better at an earlier age. 

Having access to resources should not be a privilege. More often than not, the main source of information for our families comes from other families who have been in their shoes before. 

And if there’s not a well known community to gain access to that knowledge and information, you’re left figuring it out on your own. 

Lack of Accessibility In Public Spaces

“What I’ve always found challenging is that I don’t see a lot of people like me in my day to day. I’ve wondered where are the other people that look more like me? That’s always surprised me.” 

Kerry dives into her own story in navigating her life with a diagnosis of Spastic Diplegia. 

She talks about how statistically you’d think you would see more people out in public with a disability, but how rarely she sees someone in a wheelchair or with crutches. 

She shares how the physical part of her disability can be draining, but more often than not it’s actually the emotional part that feels more draining. 

Insurance Denials

“I can’t say that the person who denies my daughter’s medication does not care. But I can say they don’t know much about the condition; They don’t know much about why she needs the medication; They don’t know anything about the seizures that my daughter has at night and every day…. 

A person making a decision to approve or deny a medication based on an algorithm or a pattern or just standard operating procedure in a workplace, that is an injustice. The person making that decision is making it based on some assumptions that will never fit the skill set that my daughter’s needs will provide.”

Pedro and Jo, tell their daughter Aitana’s story and the challenges they’ve faced being denied medically necessary medication from their insurance company. 

Just because insurance denial is common, doesn’t mean it is right. 

We hear this every single day within the community. Services, medications, equipment, home modifications, all denied from insurance companies because the bottom line is more important than another’s quality of life. 

We are a society that functions based of a broken system.

We may not be able to immediately change the system, but we can build awareness. Change is not possible without it.

Grief and Fear

“Nobody takes care of her like we do.  She’s nonverbal she has physical limitations and we know her inside and out – what makes her upset, what calms her…

…and to think that one day we might not be here to be that support for her is very scary. “ 

Daina, tells their story with their daughter, Charlotte, who is 17 years old and diagnosed with Tuberous Sclerosis Complex. 

She shares how many challenges they face each day and how it’s a world you don’t know much about until you’re thrown into it. 

Something we hear everyday from our families is how scary it is to think about their child’s future without them in it as the main caretakers. 

These emotions are heavy, they are very real, and they are something our families face each and every day. 

When having a child, you don’t go into it assuming you’ll be a caretaker for them for the rest of their lives. Our families face the weight of this fear every single day. 

Navigating The System

“Being in the NICU for that long is, for any parent, traumatic. You don’t know if you’ll get a call in the middle of the night that your daughter has passed away. And dealing with that constantly was a lot…” 

Listen in to Patrick tell their story with their daughter, Brielle who is 3 years old and diagnosed with Spastic Diplegic Cerebral Palsy. 

He shares how not only is there the emotional weight of having two girls in the NICU, but the challenges they’ve faced with navigating a broken system. 

“There is a lot of ambiguity about what different services can provide and there’s really nobody that can navigate that system. So unless you have another family member or advocate, it’s very difficult for a family to navigate all of the different services and needs that your child will need.”

He believes that with more awareness it will help his family and families just like his, gain easier access to what they truly need in order to provide the best chances at the most independent life for their daughter.

One Parent Having To Stay Home

“Getting competent nursing to come in has been a challenge. If we do not feel comfortable we will not send her in with that nurse.” 

“…Agencies do not put any effort into doing any type of screening. We’ve heard, “Nah, she looks too heavy for me” or “She is probably too much of a burden for me”. 

Kathy and Gary share their journey with their 14 year old daughter, Katelynn, and the challenges they face in the day to day in caring for her needs. 

They discuss the challenges in finding support and help they need to maintain their own careers and their own health. 

We hear stories like this with so many of our families…. Trying to balance life and their children’s needs that so often other important things for themselves get pushed aside. 

They are hopeful that with more awareness to what their needs are, that it could help them find the support their family and families like theirs need.

Lack of Adult Changing Tables in Public Spaces

“Dino loves to go out anywhere in the community and our daughter, Ella, wants to go and do things and planning those trips is really challenging. 

When Dino was younger he wasn’t stable medically so it was hard to go out and do things, but then as he is stable and healthy then we realized we want to go out, but if we are going to be at the aquarium for 5 hours, we have nowhere to change him. 

This is proving to be one of the biggest hurdles for us to try and enjoy our lives together as a family.” 

Jackie and Anthony share their story with their 9 year old son, Dino, and the challenges they are facing as a family now trying to go out and do things in public with the lack of accessibility for  adult sized changing tables. 

They share the impact it also has on Dino’s sister, Ella, and how they have to pre-plan even the smallest trips – even to the grocery store. 

The impact that this lack of accessibility has goes far beyond just their family. It impacts families everywhere and their ability to access places they’d love to go as a family.

This is something many don’t think about until you’re in their shoes. Bringing more awareness to this challenge can help bring about meaningful change.

Employment for Adults with Disabilities

“Over the last couple of years I have went to several interviews that I was either qualified for or over-qualified for and when I went in for interview, they all ended the same… 

‘Thank you for coming in we will be in touch soon.’” 

DonnaJean (DJ) shares her story of being a young adult navigating the world of employment with a disability. She shares how despite the laws in place that are supposed to help aid against discrimination, she still faces significant challenges finding a company to hire her ….despite being qualified. 

She shares how the most disheartening part about it, is that she has overcome so much adversity and could be an asset to any company, but they won’t even consider her… and now it impacts her ability to be a financially independent adult. 

Finding Resources

“Living with mild Cerebral Palsy means I live between two worlds. I live in the disabled world and the non-disabled world. Sometimes it can be tough to figure out exactly where I belong.” 

Irene tells her story of growing up in between two worlds and navigating the challenges that come with that. 

She shares how challenging it was to find resources and how if she had to learn to become the best advocate for herself and that’s why inclusion is so important, not only to her, but to our society. 

“Inclusion is really important and for me what inclusion means is being seen, heard, valued, and included. I want people to understand that all people with disabilities should have a great deal of help and support.”