Parent’s Reflection on Child Life Services

As we continue to celebrate child life month, we have another guest blog post from an anonymous parent.

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As a first time mom you are learning right along side of your little one. I mean let’s be honest you have never been a mom, how are you supposed to know everything? The answer is you’re not, and looking back, how would I have ever known what was wrong?

It was a very exciting time for my family and I. My first-born was 18 months old, we were expecting our second son that spring and to boot I was offered a great position in a preschool working part-time, allowing my 18 month old to come with me. Life was fabulous!

One morning I dropped him off in his class where he was still getting adjusted to, but as a first time mom and a post preschool teacher of many years I knew or I thought I knew to let him cry it out, just like I did when I sleep trained him. Well that day he cried all day. Towards the afternoon I said something isn’t right. I went in scooped him up and brought him in my class and cuddled with him. He started to calm down but never stopped crying fully, so I did what any first time mom would do I carried him around with me. After an hour I said to myself okay now this is getting crazy!

Right before we left work I decided to change his diaper and what I saw next was extremely devastating. As I looked down what I thought was his intestines was really a massive hernia, I thank god that day a pediatric doctor was in the room. She took one look at him and said get to the hospital right away. I scooped up my child and I got to the hospital as fast as I could.

There we learned that this was even more serious. He was rushed with me and my husband to the sonogram room where he was held down by many doctors in order to make sure the blood flow to his groin was still working.

My mind was racing…..how did he get a hernia? Was it because I let him cry too long? Was his diaper to tight? I remember saying to doctors it’s just a hernia, how did it get so alarming? I was lost and all of a sudden my inner mom thoughts came to surface. I started to remember what one of my best friends, who happens to be a child life specialist, had taught me.

So as we were in the wheelchair, I pretended it was a polar express train going to the North Pole. When he was screaming from pure anxiety during the sono, I layed across him where my face was against his, telling him he was okay that mommy would never let anything or anyone hurt him on purpose. I began to sing to him and cry with him and at that moment he started to calm down and realized he had me and I wasn’t going anywhere.

We came home knowing he was getting surgery in a couple of days. I was a mess. I quickly picked up the phone and called what I like to call her “my mommy rock” also known as a child life specialist, my best bud, Shani.

She walked me through it all I remember feeling guilty knowing that there were children with far worse situations. She reminded me that he was my child going through this experience and that was as hard as any other situation. She made me a little bag of fun things for him at the hospital and dropped it off early in the morning so we wouldn’t forget it. She was my rock, she held me up when I couldn’t hold myself. She helped me be strong for my family.  She called to check up on him and at the same time giving me space so I can deal with my baby being in so much pain.

I remember not being able to bring him into the operating room because I was pregnant. I also remember crying because he was never away from me and left with strangers (well strangers to him the doctors where absolutely amazing). I also remember holding him after kissing him a million times. I can honestly say I still get teary eyed when I think about it.

Some people say, please it’s just a hernia, but did you know?

A) a hernia can stop the blood flow and cause a cardiac arrest?

B) a hernia not treated can cause other health problems

Thanks to Shani, I knew what questions to ask and even came up with other ones that I wouldn’t have thought about if it wasn’t for her.

It took two weeks for him to feel better and I have to say if it wasn’t for my family, friends and especially my best friend, I wouldn’t have been able to be as strong as I was.

So here’s to child life month! Thank you for getting me through a serious, traumatic mommy experience and for teaching me how doctors and scary moments don’t have to be so scary after all.

Signed,

Anonymous Parent of Two

If you would like to share a story of an experience that you had with a child life specialist, or how you learned about the field, please click here.

Handling The News of Your Child’s Diagnosis

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You are sitting in the doctor’s office and you can sense that you are about to receive some life changing news. Maybe you are pregnant, so you gently place your hand on your belly to let your baby know that you are close, or you are holding your squirmy toddler and softly singing in their ear while rocking them with ease. You might have had to leave your bedside post of holding your child’s hand while they are hooked up to monitors and on a breathing machine.

When the doctor walks in, your body is fueled with adrenaline. They start to give you information about a diagnosis, prognosis and treatment plan. The emotions take over and there is a physiological change occurring to your body. Tears are streaming down your face, you have difficulty breathing or speaking. There is a ringing in your ears, you may feel nauseous and your head is swirling with jumbled thoughts and information.

What is happening? What did they just say? You are absorbing some of it, but you know it’s not all sinking in.

You look around and try to grasp a sense of reality while knowing that your entire world has been flipped upside down. There is feeling of isolation and that no one has experienced this before.

You leave the meeting holding medical pamphlets and feeling beaten down; red raced, puffy eyes, still trying to catch your breath from the bomb that was just dropped on you.

If you are with your companion, than you are wrapped into their arms, hoping that with a big squeeze that this nightmare is just that, a nightmare and you will awake soon to your normal life.

If you are alone, than you are on the phone calling your number one. When you hear their voice, you break down crying uncontrollably and barely able to speak. The words do eventually make it out and hearing yourself say it makes it hurt even more.

Where do you go from here? How can you envision your future when it has been completely altered without you causing it?

Oh no, that thought has now allowed the feelings of guilt to take over. You start the blame game and the finger is pointing directly at yourself. This is just too much. You can’t do this, this isn’t happening.

Then you feel your baby kick, or hear your toddler make a noise or you go back to your bedside post and see your beautiful child fighting for their life.

You have to do this. You are your child’s voice and protector. The unconditional love is the driving force to push you forward.

We got your back

As a child life specialist, our role is working with pediatric patients and their families, for their psychosocial and developmental needs. We are there to provide support, empathy, preparation and play. We help them find a sense of control and teach advocacy skills in this very complicated medical world.

I thought it might be helpful to share what to expect after a diagnosis and healthy ways to cope.

  • Entitlement to Have and Express Your Feelings – You are going to have a roller coaster ride of emotions. The feelings of self-doubt, denial, guilt, anger, sadness and loss are just a few of the biggies. It is okay to have all of these feelings and more. Share them with someone you trust, write them down or hear yourself say them out loud. Your body can only hold so much. By suppressing your emotions they will eventually spill out when you least expect it. Release them and you will feel more balanced and better equipped to take care of yourself and your child.
  • Searching Online– One of the first things that you may want to do is get on your computer or smart phone and start looking up medical information. It will be difficult to filter the facts from fiction and also what would be suited for your child’s specific diagnosis and care plan. I would suggest finding out if there is a medical librarian or family resource center at your hospital. They are trained to help you find the appropriate, accredited information without getting lost in the nonsense.
  • Loss of Control– In the beginning there will be a HUGE sense of loss of control. You did not cause this and you did not want this for your family. There will be many days that you are overwhelmed and feel like someone else is steering the wheel for your life. When this happens start to find the small decisions that you still have control over. Small choice making can help you feel like you are in better control of the whole situation.
  • Transitions– There will be many changes that will occur. Your job, home, finances, vehicle and even your day-to-day routine can be affected. This can become very stressful and burn you out quickly. If you need help, ask for it. There are wonderful programs, professionals and neighbors who would all be willing to help. It may be as simple as bringing over a cooked meal twice a week or setting up family meetings with the doctors to clarify information.
  • Support System– Start to surround yourself with supporters. At first you may think that all of your friends and family members will be able to help, relate or even just validate your feelings. Unfortunately that is not always the case. You may find that some of the best people to have on your team are strangers who are going through the exact same thing. Joining a support group in town, talking to other parents at therapy/doctor appointments or finding a community site on social media may be the place to look. You may even decide to start-up your own blog; this could be a great way to release feelings, find veteran parents and even give tips on what has been working for you.
  • Organization– This may not be your strong suite, but it soon will be. With all of the health insurance information, medical history and schedules, you will be very lost and overwhelmed if there isn’t some organization to keep it all in line. Purchase a calendar, note pad or use your electronic device to store all of this information, so it is readily accessible. Writing down questions and concerns as they come up will also help you to remember and bring up when meeting with the medical team.
  • Me Time– The juggles of work, kids, household upkeep and now the new health diagnosis for your child, can put you overboard. Find a healthy way to release stress and commit yourself to it. Maybe it is working out, girl’s night or just taking a drive alone. Do something that will help you stay rejuvenated. There should be no feelings of guilt, as you will be a better parent to your child if you take care of yourself first.
  • Sibling Involvement– Siblings play a very important role. They should be included and told what is happening. If you struggle with ways to explain it, reach out to a professional, such as a child life specialist, who can help assist you. Having them join a sibling support group is also a wonderful way to help them express their thoughts and feelings, process what is happening and feel like they aren’t the only kid going through this.
  • You Are the Expert– You will be encountering many medical and educational professionals. They are experts in their specific field, but they are not the experts of your child, you are. You will know your child’s likes/dislikes, triggers/calming methods, and preferences in food, clothing, touch, people, sounds and more. Keep that all in mind when communicating with the team. Speak up and advocate for your child, your voice is incredibly important and needs to be heard.

This is a different path in your life that you thought you would be on, but just know that you are not alone. There are other parents that have already gone through this phase, are going through it now or will go through it. You will still have that amazing relationship with your child. You will teach them so much and at the same time you will learn and grow from them.

Related articles:

Play Group VS. Support Group

My Experience with CPSE

Creative Expression in the Tech World

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As Child LIfe Specialists we are always looking for creative ways to help our patients and families express themselves. Living in such a tech-savvy world, we can use smart phones, tablets and music as a tool to help facilitate their thoughts and feelings.

There have been many creative videos done from the perspective of the patient. Talia Castellano made a huge impact on the world through her video blogs on dealing with cancer and her love for fashion and makeup. She was able to express her artistic side and feel a sense of normalcy in being a teenager. Her legacy continues on after she lost her battle to neuroblastoma on July 16, 2013.

Another great video that sticks out in my mind is Kelly Clarkson’s song, Stronger created at Seattle Children’s Hospital. It shows an incredible amount of resiliency that the children have as they battle through treatment.

A recent one that I came across was the cup song from Pitch Perfect. The patient, Carmen changed the lyrics to the fight and defeat of her cancer.

Families, friends and loved ones can also express their feelings of coping with someone’s illness. It allows them to show their support in the virtual world in a private or public message. Think about how amazing the person receiving the message would feel.

So as crazy as I am, I created my own video with my two young boys today. It is dedicated to a dear friend of mine Deb Vilas, who is a leader in the child life field and battling breast cancer. She is always staying optimistic and uses humor as a great way to release her anger with her illness.

The creativity that can come from the tech world is endless. So what are you going to create with your patients, kids or just yourself? Have fun!