Survivor Story

                                                                    Survivor Story

My name is Liz and my son Vinnie is 4 years old with multiple disabilities, as a result of a hypoxic brain injury at birth. He spent his first month in NICU, even though he was a full-term baby. And he was sent home on hospice care. He has spastic quadriplegic cerebral palsy and is blind (cortical visual impairment), non-mobile, nonverbal and g-tube fed. Vinnie’s brain injury at birth was caused by medical negligence in labor and delivery. I went into the hospital with full trust in them to know what to do to take care of us in the best way possible. Our lives changed forever that day, because the nurses and doctor did not monitor the drug Pitocin and my contractions properly. When I had contractions, they were too close together, where normally there is enough time in between them for the baby to breathe. The hospital staff violated its own policy on how many contractions I should be having, and within what specific time frame. Vinnie was trying to breathe and he could not, so his brain was deprived of oxygen over an extended period of time. They have described it to me like this: “It is as if you are swimming and trying to come up for air, and you can’t”. My sweet baby. It breaks my heart that I put all of my trust into these “professionals”-- who did not give us enough attention or effort on the most important day of our lives. 

However, if I focused only on that fact, as I did for most of his first year here on earth, I would be so horrendously depressed that I would probably not be able to continue living life, or be able to function. I have had to search for some other kinds of spiritual meaning behind this, and focus on the positive aspects of our life--instead of all of the many things that we have been robbed of due to negligence and brain injury. Don’t get me wrong, there are days where I need to sit and wallow in my own self pity and throw a big pity party. But it is doing myself and my son and the world a disservice if I do not allow myself to continue to pursue happiness and meaning behind all of the struggles and pain. Me and Vinnie both have a lot to offer the world, and we have to try to be healthy and happy to be able to share our unique spirits and joy with others. I tell myself that me and him were meant for each other, and that even though it is so hard sometimes, Vinnie is how he was meant to be. And he was made different for a reason.

In Vinnie’s short life, we have endured countless challenges, both personal and systematic. Vinnie’s father did not want to be a part of his life or care needs, so he moved to another state a couple years ago. We do not have family here in Nebraska where we live, because we moved here to pursue my career goals and to escape the old people and places that had caused us a lot of grief. Inconsistent support and a lack of support was something that we experienced regularly. Making new friends in an unfamiliar place, especially friends we could relate to with our unique circumstances, was something difficult as well. Then there came the challenges involved in being Vinnie’s full time caregiver. I could not ever fully enjoy the role of “parent”, because I was also thrown into the role of “24/7 caregiver”--which was heavy and consuming. All of a sudden I had to quickly learn a lot of things that I never had to do before. How to do my own research about our health conditions, his being extremely complex. And mine worsening too as a result of the compassion fatigue of caregiving. 

I had to seek services for us, and encountered a huge lack of support from all types of different organizations and agencies who were supposed to be there to help us. It was actually shocking, the lack of support that was really out there, even when I was actively seeking it. I encountered daycares and schools that did not want to care for my high needs child. I found government assistance programs that would ignore us or disregard us. I found a community which was non-inclusive in so many ways, from the non-accessible building structures and surroundings, to the people who had no idea what disability meant or how it affects us. I had to fight a huge legal battle on Vinnie’s behalf to seek justice for what was done. 

It is very interesting how you think you are going to be having a child and teaching them all about the world. When it comes to a child like mine, all of a sudden you find yourself teaching an ignorant world about your child. Though things are not perfect, I have slowly found more friendships with local special needs families. I started a small local support group for online and occasional in-person support. I have a medical team that I can rely on for most all of our needs. I found a church with a special needs ministry, so that Vinnie receives 1:1 support so we can attend service--and they even have a sensory room where he can go for a sensory break! I connected with the Arc of Nebraska and found some support with them, and they helped me advocate at a mediation with the school district (ugh--don’t get me started). 

Recently, reaching out to Brain Injury Alliance of Nebraska was one of the best things I accidentally stumbled upon. Chris and Peggy were eager to reach out and provide a multitude of supports to try and connect us to helpful resources that I may have not yet thought of. Seeing what “real help” looks like, after seeing so much chaos and disorganization, and lack of support, is so humbling and empowering. I feel honored to have encountered an organization that actually does what it says it is doing. It feels like so often that people are just pretending to help, when really they are just doing the minimal amount of work required to stay employed. Sometimes it does not take much to be that supportive person to someone else. Just viewing people as people, and having a helping attitude can go a long way. 

Despite the huge hurdles that constantly come my way involving Vinnie and his daily and lifetime care needs, I am stubbornly pursuing my MS in Clinical Counseling currently at Bellevue University. I am excited to one day be able to provide mental health services to vulnerable, diverse populations. And to be able to be ‘that person’ to others that I always needed, but struggled to find. Vinnie’s needs are constantly changing, but he is stable and healthy at home and i am very proud of him and all he has accomplished. He is the strongest little man I know, and continues to smile every day despite some really unfair challenges that he faces.

Back to School Time! (again)

As a parent of a child with complex health needs, I am left here yet again feeling very sorry for myself--and my child--at this time of year. This is the second year in a row that my four year old child with multiple disabilities does not have a school to attend. And I will explain why.

Usually people will ask if I have tried working with the school district. Yes, as a matter of fact, indeed I have. However, this issue is more complex than you might have ever taken the time to think about.

Many people have a typically functioning child. Their children can defend themselves somewhat against any oncoming danger or threat (another child, an object, a slippery floor, something really dirty or disgusting, or something unsafe). Their children can report back to them if something unusual happened that day. If they felt unsafe. If they felt ignored. If someone hurt them. If someone spoke unkindly to them. My child cannot.

A typically functioning child could use the restroom like the other children, and wash their own hands. My child cannot. He relies on someone to make sure his diaper stays clean and dry. And that his surroundings are clean, and germ-free. A small cold for a typical child, could send my immune-compromised child into RSV or pneumonia in a matter of moments. My child can die, if he were to contract these types of illnesses. His fragile body cannot fight them off. He stays very clean and safe at home. But what will happen when he is subjected to all of those other children?

A typically functioning child could see the world around them, and want to engage in it because of its stimulating sights to be seen. And to know exactly what is happening around them. My child cannot. He needs alternative methods of engagement and entertainment, that require audio-stimulation as an alternative. Someone needs to provide that to him individually, if his environment is not naturally providing the right kind, or enough for him.

A typically functioning child could eat breakfast and lunch at school. They could bring a fork or a spoon to their mouth. They could eat enough to sustain themselves throughout their day. My child cannot. My child is tube-fed. His feeding is one of the most important parts of his care. The wrong person caring for him could cause him to dramatically lose all of the progress he has made in weight gains for the past two years, while being carefully monitored by myself and occasional nurses.

A typically functioning child could introduce themselves to others. Could engage with others. Could be excited about the same interactive activities in the classroom and outdoors, as the others. My child cannot. He does not like the same things that everybody else likes. He does not understand what they are doing. He does not want to do most of the things they will be doing. He loves music, and toys that make noise. and motion. Swinging. Rocking. Being pushed in his wheelchair/stroller. He requires alternative goals and alternative activities.

A typically functioning child could get through the school day with a small nap, or no nap at all by the time they are 4 years old. My child cannot. He requires a longer nap in his day, and a place to relax and do that if needed. He might need an alternative room with sensory items to soothe him if he gets overstimulated. His brain is not normal. It is damaged. And it gets very overwhelmed. He needs constant supervision from someone who understands these things about him. And knows what to do and how to respond. He cannot emotionally regulate. And he cannot protect himself. 

And yet the schools seem to think that: 

1. He does not require a 1:1 level of care (aka they don't want to pay for it), or a treatment nurse assigned to his care.

and

2. He does not require school or services at all (they waitlisted him for preschool services, to avoid dealing with me since I don't comply)

The problem is, that by not having a 1:1 nurse/aide who is specifically assigned to his care and documented as a reality in his IEP, there is definitely an opportunity for something very bad to happen to my child. And we have already been down this road. The "bad thing" already happened. He was injured at birth, because of negligent care. And I refuse to allow anyone to be negligent in his care ever again.

So, meanwhile, while the egocentric world is focused on their typical children, their back to school photos, their school supplies, clothing, sports activities, and busy/active/healthy lives--me and my son will sit here. Confined to our home. Until someone can convince me that they can help me adequately to keep my child cared for and safe.