Zeroing in on abilities, not disabilities
Regardless of a child’s involvement, zeroing in on abilities and not disabilities is suggested. Capitalizing on strengths and interests is recommended . One mother whose daughter has significant medical issues recently told me: “She can do anything. You have to provide as many experiences as you can for them, and then they will grow and develop self esteem from the things that they learn they can do.”
Carol Nolan, RN, BSN, Registered Nurse
Ask questions
Cerebral palsy is such a broad umbrella term that it’s very hard to generalize, but I would say that kids with cerebral palsy will surprise you and that none of us have crystal ball to predict exactly what a child will be able to do or may have difficulty accomplishing. Again and again, I hear stories from families and I am surprised and thrilled by the achievements of many kids with cerebral palsy. I would also say that because it is such a broad term that it can be a little challenging for families looking for information about CP and that it’s easy to get information that may not actually be relevant to your child. So, I strongly encourage families to ask the questions they have directly of their providers to get the best information that specifically relates to their child.
Laurie Glader, MD, Pediatrician, Cerebral Palsy Program
Having fun
Don’t forget to have fun. Enjoy each day. Go to the beach. Participate in family activities. We have families who take their children everywhere, regardless of the difficulty involved. Letting a child be a child. Not that one can forget about the disabilities, but there are so many ways for positive experiences. We have a CP bulletin board with photos of patients at proms in wheelchairs, doing eclectic karate, modeling, throwing out a ball at a Red Sox game and playing challenger softball. The possibilities are endless.
Carol Nolan, RN, BSN, Registered Nurse
Helping your child cope with hospital visits
It depends a lot on your child’s cognitive level. If it’s a child who can talk about it and anticipate it, I think it can be helpful to read books about children going to the hospital and help them understand why they need to come in and why they need to do the therapy. Sometimes acting out doctor play with toys can be really helpful. For younger kids, it’s more about finding how to comfort them when they’re in the hospital, so making sure that you’ve brought their favorite blankie or toy familiar things, smells, people, sounds. For children who have visual impairment, it can be very disorienting to be in a new place without being able to see things, so bringing familiar things, like a familiar blanket or pillow, might give them a sense of comfort from home.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Talking to your child
I’m a firm believer in having the children know everything about their condition. I think there are some exceptions to that because some children are either very anxious or their parents would prefer that they not hear certain things, and I feel that’s appropriate, but most parents and children want to hear the whole story.
Gregory Melkonian, DVM, MD, Orthopedic Surgeon
A helpful tip for families
This is a tip that I really like to give families: bring some pictures of your child when they’re functioning at their best, and let the staff know what makes your child an individual and special. Knowing kids’ favorite toys or colors, what makes them happy, and what helps them interact well is very helpful. For children who have difficulty expressing themselves verbally and have limited motor control, it’s very difficult for the staff to get a sense of who they are as quickly as they would for a child who is verbal. Pictures and favorite toys can be a really nice conversation starter. It can also allow people who are working with your family for different things to spend more time talking directly with your child.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Build a medical team that works for you
I think one of the important things is building a great clinician team. When you’re in the hospital or in the emergency room, there are times when you’re not going to have a lot of choice about who you see, but when you’re establishing a team of people you see regularly, you do have some choice. You should seek out doctors that you feel respect your opinions, listen to you, and care for your child in a way that makes you feel comfortable.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Redirect frustration and anger
Be clear about what you need. When you do get frustrated or angry, try to direct it in a way that’s effective, so you use it to become very determined, use it to make the phone calls that you need to, and use it to speak up. Realize that directing anger towards the people trying to help may actually get in the way of care for your child by alienating the very people who are trying to help. Professionals, who love this field, know that the situations families face trying to get the best care for their children sometimes place them under almost unendurable stress and that at times parents need to vent and express difficult emotions. When you find yourself at the point of wanting to yell, try to take a breath and think about how you can communicate your feelings. There may be people who don’t have the power to give you the answer that you need, and if you find yourself in that situation, think about if you can back off and find a different way around it. Thinking creatively and trying a different route if a situation is not working is really important. Remember that you have many resources in the hospital including social workers, nurses, and physicians. If you are having difficulties with the team, think about speaking with the social worker, the attending physician or the nursing supervisor. Patient relations can also help problem solve with you and the team. Also, you might just find yourself at the end of your rope from lack of sleep, exercise, and the simultaneous monotony and stress of being in a hospital room. It might help to have another relative or friend spend an overnight so you can get home and get some rest and recharge.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Reaching out for help
I think families of kids with chronic medical conditions often leave themselves for last, and you can’t take good care of your child unless you’re taking at least decent care of yourself. That means exercising, sleeping, and just doing things by yourself once in a while. It’s not easy to do and it’s especially challenging when your child is in the hospital. However, if a friend says, “Look, what can I do?” say to your friend, “Please come and sit with my child for an hour in the hospital” or “Please could you just make dinner tonight so that I can have that extra half an hour to go downstairs and take a nap?” Make as many connections as you can within your community, within your religious community, within your neighborhood and schools. People want to do good things, and it’s very hard to ask for help, but it actually will make people feel good if they can do things to help you.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Giving yourself a little space
Get out. Go to the parents’ social hours, and just go across the street and have dinner at a restaurant one night. Just get yourself away and have that little space. I personally like doing yoga, and I think that’s a great for families too. It’s relaxing and invigorating, and if you’re practicing yoga or meditation yourself, you’ll bring that ability to relax during stress to your children and help them be more relaxed too.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Think creatively
I had a patient who had a very significant neuromuscular condition. It wasn’t CP, but he couldn’t walk, and they wanted to go somewhere that he couldn’t take his wheelchair. They wanted to go to the beach, and they figured out how to he would go in a little red wagon. Thinking creatively about what you can do to adapt to the environment, what you can do to allow them to play with the other children. For example, if your child wants to play catch, you can play catch with a Velcro mitt.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Incorporating self-care into your daily life
One of the challenges is you see so many different doctors and each doctor gives you a different medication, and then you see Physical Therapy and Occupational Therapy. Everybody’s giving you so many different things to do. Try to break it down and make a daily schedule so that things don’t fall by the wayside. If you have a baby who needs to have her hips stretched and flexed, make that part of your diapering routine just for an extra five minutes when you change their diaper. Or, put a yoga tape on for yourself and have your child on the floor with you and every few minutes, do a little stretch with them. Think about ways that you can get the care for them and for yourself. Instead of taking the car, push the wheelchair for a walk so that you get a walk in and they get out in the community.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Incorporating self-care into daily life
One of the challenges is you see so many different doctors and each doctor gives you a different medication, and then you see Physical Therapy and Occupational Therapy. Everybody’s giving you so many different things to do. Try to break it down and make a daily schedule so that things don’t fall by the wayside. If you have a baby who needs to have her hips stretched and flexed, make that part of your diapering routine just for an extra five minutes when you change their diaper. Or, put a yoga tape on for yourself and have your child on the floor with you and every few minutes, do a little stretch with them. Think about ways that you can get the care for them and for yourself. Instead of taking the car, push the wheelchair for a walk so that you get a walk in and they get out in the community.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Dealing with accessibility issues
A lot of families have talked about feeling they didn’t have access to their religious communities, for example because their church didn’t have a ramp. Go and talk to the people in charge and figure out how to overcome the obstacle. For one family, their child needed someone to be with her when she was in child care during church. One of the older children in the church was able to spend time with her so her parents got a break and chance to listen to the sermon. Just think creatively about your experiences, and the experiences you want your children to have. Even in terms of vacations, some things are getting easier, for example Disney has a huge range of possible accommodations including bed rails, roll in showers, and companion assisted bathrooms.
Emily Davidson, MD, MPH, Pediatrician, Complex Care Services
Be your child’s advocate
Parents have to be advocates because they are their child’s best advocate. A lot of times there are little road blocks in the way, and if they don’t advocate and advocate strongly, they may not get the services that they need. Also, it’s good for them to be well educated and to know what’s out there and what’s available.
Gregory Melkonian, DVM, MD, Orthopedic Surgeon
Every child is unique
I think the most important thing is to remember that every child is unique and that there is not always a single right answer to a given type of medical issue that a child may present with. We may have our opinions medically about what the best option is, but that those options always have to be considered in the context of the child’s whole life and how it’s going to impact them ultimately in terms of their function and their abilities and their happiness it all fits into a bigger picture.
Laurie Glader, MD, Pediatrician, Cerebral Palsy Program