TAAF Talk Caregiver

Be Their Voice

Arteriovenous Malformation (AVM), a rare disease of complex tangles of abnormal arteries and veins that can rupture resulting in an acquired brain injury. As TAAF says, "It's only rare until it happens to you”.  As parents of children who suffered a brain injury, what do we do when this rare disease invades our lives and wreaks havoc on the world as we once knew it? Where do we turn and who do we turn to? How do we advocate for better access to therapies and medical intervention given our children’s young age?

That was a question I had to ask myself over and over again after this rare disease invaded our family. In a blink of an eye our world, our happy normal life, was turned upside down. One thing I quickly learned after being given a diagnosis was, I would have very little time to understand or research the disease. As stressful as it was to know virtually nothing, I immediately had to be fully present to ensure my son, Ricky, was receiving the best medical care possible. I knew I had to figure out a way to bear down and research the diagnosis and the grim survival rate we were given due to where his rupture occurred. In the very beginning, thankfully my family stepped up to do the research and guided me on to where and who to turn. TAAF being one of my first contacts to help guide me in the direction I needed to go in.  I learned early on as I was  sitting in that hospital room next to my son lying unconscious in a coma, that I was his voice, I was his number one advocate and I had to listen to my “mom gut” and follow what it was telling me. 

As a parent we play a key role in helping others understand our children and we have to use our own voice to do this when our children are unable to do it for themselves. If I would have taken the initial advice and recommendations from my son’s medical team this might be a much shorter story. The medical staff suggested removing him from the machines that were keeping him alive because they believed his brain stem had been severed after his AVM rupture and his brain was no longer able to communicate with his body. I was told that he would not have a purposeful life and if I chose to keep him alive that I needed to be prepared that he would most likely be in a state of Unresponsive Wakefulness syndrome or what was previously known as a vegetative state.  This very well may have been true, and while I am no medical expert, I knew my son. I knew that when those nurses squeezed those oral swabs between his breathing tube and bite guards to try and clean his teeth and he instantly clenched his fist and curled his toes, he did not like it. Involuntary movements are what they said this was, but how can this be? He did this every time they tried to clean his teeth. In this moment, knowing my son, I just knew they were wrong and he was letting them know he did not like it. It was at that point I first realized being his voice was the number one tool I needed to use to advocate for him. 

Little did I know being his voice was just the beginning of our advocacy journey.  His road to recovery has been nothing short of challenging. As we all know, there is no instruction manual when it comes to parenting especially for parents of children with special needs. Everything has been a learning experience thus far, as we make it over one speed bump, another one lies ahead for us. As a parent, I learned not only to be my son’s voice, but to allow others to help to  find medical professionals I could trust. Do not be afraid to ask the medical professionals questions or to question their medical advice. When it came to hospital rounds, I was there. I joined in their shift change meetings and listened to what his care team had to say and took note of what I did not understand. I asked questions and did research to ensure I understood. 

I developed relationships with his care team where I knew I could go to them and hold an honest conversation with them and gain insight into their recommendations and expertise. This allowed me to breathe a sigh of relief and trust my son was in good hands. I will never forget, when my son was getting close to being discharged from his 2 ½ month ICU hospital stay post rupture, one of his nurses I had grown to trust, came into my son’s room and told me:  “When you get home with him, know you will not break him, do not be afraid to put him on the ground. Let him move around and figure out how to use his body again, think of him being like a newborn again.” She proceeded to tell me, oftentimes when kids go home with new challenges and new medical equipment in tow, parents are afraid their children will get hurt. That fear leads to the patient spending a lot of time laying in bed and sitting in a wheelchair. This advice really opened my eyes, after all my son was like a newborn again. He could not even hold up his own head and barely could move his own arms and legs. So I did exactly what she said. When we finally arrived home 4 months later I created a safe place for him on the floor and down there he went. It was a game changer, and just like that nurse said, my son started trying to figure out how to sit up and roll over which eventually led to him learning how to crawl and walk again. 

Finding an appropriate therapy place for my son post AVM rupture, which caused a hemorrhagic stroke resulting in an acquired brain injury, has been and still is a challenge. After 2 months of trying an inpatient rehabilitation center, we were told RIcky was just not ready for rehab and we were sent home to do outpatient rehab.  Here in California, it is extremely difficult to find the same kind of stroke rehabilitation for pediatrics as it is for adults. 

We were assigned to a social worker in the hospital to provide us with the bare bones of getting started with a newly disabled child. We were advised to apply for Medi-cal, for our local regional center and a program California offers called California Children’s Services (CCS).  CCS provides rehabilitation services and medical equipment for children with special needs. Once we arrived for our CCS intake meeting, I quickly realized this was not the same type of rehab I was expecting, nor was it at all like what I’d seen shown on social media that children were receiving (not in California). I really wanted one of these state of the art, top notch places for him. Ricky on the other hand, wanted nothing to do with therapy. He actually wanted nothing to do with anything that he perceived as being medically based. He would just shut down and refuse to participate. It took him over a year to learn how to talk again, so I often saw his resistance to these activities through huge fits of rage that included screaming, hitting, and kicking. Ricky had to be taught to advocate for himself and speak up as he gradually gained his voice back, letting us and the medical providers know how he is feeling. 

In California, there are various services families can receive. It is important to know what options are available because not all services will be ideal or the best fit for your child. I was initially told CCS was the only option for my son’s rehabilitation therapy. I was told they will provide him everything he needs until he is 18. Any assistance devices he may need to increase his independence would also be covered. Four years later, it took a caring social worker to inform me that I have more options.  I learned that I could have denied CCS to instead go through our private insurance for his rehabilitation therapy.

Four and a half years later I am still here navigating the world trying to figure it all out.  I have learned along the way to advocate for better access to care due to my son’s age. As I have stated over and over again, being Ricky’s voice is the number one way I advocate for him. I also know a good support system is a must. Not being afraid to lean on others when you need help means you can advocate that much harder for your child. Find medical experts you trust and be brave for your child when it comes to asking questions and seeking out second opinions. Question their advice! After all, they are only human and as humans we make mistakes. Knowing what services are available and what our options are enables us to advocate for the best medical care and services our children deserve.  The hardest part is figuring out what options we have. I feel a lot of this can be remedied from the start with the hospital social workers. As special needs parents, we need informed social workers who know the ins and outs of the state and local systems and are able to lay out all the possible options so we can quickly make informed decisions based on the needs of our children. I know they are out there, more often than not they are just bombarded with heavy caseloads. 

I have learned, through trial and error, it all boils down to being my son’s voice and speaking up when I do not agree with his level of care. I am confident I know what is best for my son. I do a lot of research and I’m not satisfied when the options presented to me don't seem to fit. I’ve learned to “leave no stone unturned’ when it comes to advocating for Ricky.

Click the photo below to learn more about Angela Walker.