Community Spotlight: The Hsueh Family Difficult Journey To Better Care For Their Son
-Tell us a little bit about your family. How many kids do you have? What are their names?
Our family, The Hsueh Family: Yu-Chen, Jaymmie, Jayden and Jasmine (twins), who are 8 years old.
-Tell us a bit about Jayden and what it was like to find out that he would carry a diagnosis of CP. What is his presentation of CP like? How has this impacted your life?
Jayden wasn’t breathing when he was born. From what I was told/remember at the OR (I had a C-section), they did bag resuscitation on him. Right afterwards he was transferred at NICU (neonatal intensive care unit) due to the trauma during birth. The hardest part was I didn’t even see him for couple of days (maybe more, everything was blurry that week) until I went to visit him at the NICU after I was cleared to get off my hospital bed. He stayed at the NICU for 5 weeks. The hospital and clinics became our second home. I once read [having a child in the NICU is]… like years of planning a vacation to Bora Bora, and your flight ends up at North Pole. Where all along I am set to go at the tropical place but ended up at the opposite type of climate that you didn’t prepare for. It was definitely a shocking experience. Our life changed, so many little things that we can no longer do. An hour task became a whole day task. There are several people who wanted to express sympathy but really what they are doing is making me feel worst because the question is how all this happened.
– Do you feel you have a strong support system?
Yes, family members stepped in and were by our side since the beginning. Some specialists guided us on how to start the process of care, but besides that it was really hard to find help outside family/relatives. For example, a nurse so that I can at least get some sleep or run errands or even some time to relax.
– Have you felt that you had access to all of the resources that you needed for him? If not, what was missing for him or for you, as a caregiver?
It took some time to find resources. I felt like I was pulling teeth every single time. Hours spent on the phone either to ask questions, follow up with something, or on hold to get a live person to talk to. Dealing with insurance is always been a nightmare. Have you ever dealt with private insurance only to get a non-coverage/denial letter? It’s sickening how every time I need documents I will get transferred to a different department and have to repeat myself. The only time it gets easier is when the company HR personnel will step in to contact insurance provider. I learned which private insurance will be hard or easy to deal with. There are times that we have no medical supplies for months at a time. SARC and CCS stepped in couple times to help us. MediCal only kicks in after our primary insurance so over the years it becomes a routine. I have to expose myself, ask people questions, be persistent, and learn to pick my battles. One of the biggest ongoing struggles is finding a nurse to help. Based on the nurses that we’ve had, they don’t get paid much, and nursing agencies have issues to keep up with demands. Equipment is another issue that in the past took a long time to get. Fighting with insurance and the process takes a long time so by the time it gets here it is almost as if the equipment is already outgrown. Fixing the equipment is a whole other story. Thankfully, CCS and National Seating Mobility are great.
– What prompted you to move to Orange County? What is different about the CP community in SoCal as opposed to where you used to live?
Living in a 3-story condo in San Jose doesn’t fit our needs. Lifting Jayden and his wheelchair is took a toll on my body. SoCal has a special place with us since we used to live in L.A. Orange County came up as one of the places to move when we are looking for a place in SoCal, but it took several tries before it happened.
I asked a few people in the beginning but none of them really know anyone in the CP community where we used to live. Moving to OC was eye opening for several reasons. I don’t need to wait for hours on the phone to get a hold of someone. I don’t have to wait for days to get an answer in regards to Jayden’s services. The school district is on top of everything to make sure Jayden starts school on time. Getting Jayden to see a doctor or specialist is manageable and it works with our schedule. In general, I would say that the system here in OC does work compared to NorCal.
-What about this CP Kids Walk/Run got you so fired up and eager to participate and to spread the word?
I met Debbie Fragner at Target, a couple of days after we moved here in OC. She was so nice and kind when she approached us. I was with my twins and my Father-in-law and at time and I felt like she knew exactly what I am going through. I must have looked horrible from the move and I so out place. She told me about the Children’s Cerebral Palsy Movement organization and explained how she knows what I am going through. We exchanged info. She checked in with me once in a while throughout the process, and she mentioned an event in the near future.
I am a social runner. I usually run when the twins are in school, it’s been my outlet. I’ve always wanted Jayden to be part of the kids races or fun races just like Jasmine. The majority of the time, like with Disney kids’ races, when I inquired about pushing a wheelchair I was told it’s not allowed. So, CP Kids Walk/Run is very special because kids with disabilities can participate and be part of the event.
-What do you think parents of both CP and able bodied kids get out of an event like this? What do you want to see happen?
There are times as a parent I can see that not everyone will like the inconvenience of having to bring CP and able bodies kids. I’d say mostly because based on my personal experience, if Jayden throws up, we get looks from others and get judged. His body doesn’t react the way some people will expect. On the other side, I felt that this event will inform more people and will give more awareness. It will help both side become part of a community.
– Are you excited about the type of community programming that CCPM is going to be rolling out this year, of which the CP Kids Walk/Run is the first?
Yes, I am excited and this is just a beginning. I look forward to more and we would love to be part of it.
– What types of programs would you most like to see offered and what days and times would either you or your son most be available to participate?
Weekend, mid-morning events works the best for Jayden due to his schedule. Something a wheelchair friendly event, where siblings can join/participate would be ideal.
Come join the Hsueh family at the Cerebral Palsy Kids Walk/Run! Kids of all ages and all abilities can come participate and make new friends! Join us on March 3rd!