Items to pack
There are many factors to consider as you’re preparing for your child’s treatment – who will be the primary caregiver for your child, where you and your family will stay, and what you should bring to feel more comfortable during your child’s hospitalization. While every family has their own unique preferences and sources of comfort, there are many practical items that may be helpful to consider as you’re packing your bags for the hospital. For your child, you may consider purchasing satin or themed pillowcases, lint rollers, gentle/sensitive skin diaper wipes, shower shoes, and a small light so your child can read at night. You may also consider getting your child some cute hospital gowns or fun pajamas that are easy to take on and off. Don’t forget to bring your child’s favorite blanket, toys, games, and puzzles. You may also want to pack a variety of electronic devices for your child to play with, such as a tablet, phone, or video game console, along with ample chargers. Make sure to pack photos and personalized notes from friends and family or request that your loved ones and friends send them to the hospital. It’s also important to pack a few essentials for yourself or whoever is going to be your child’s primary caregiver. Some recommended items include comfortable clothing, ear plugs for nighttime, and a tablet and/or laptop. A self-adhesive reusable dry erase board and markers may be helpful for communicating messages to hospital staff. A wall calendar is also helpful to remain organized and oriented.
Caring for your own wellness
As you care for your family and juggle many responsibilities, one thing you may notice is that it is easy to neglect your own health while prioritizing everyone else's. We are here to remind you that making time to care for yourself is crucial. You are an important and valued individual that deserves to feel physically, mentally, and emotionally healthy throughout this journey. Before planes depart, flight attendants state if the cabin experiences sudden pressure loss, you should secure your own oxygen mask before helping your children and/or others. Putting on your oxygen mask first means you won’t run out of breath and can help others afterwards. Similarly, prioritizing your health will fuel you to help care for your family too. For some parents and caregivers, self-care means having time to talk about topics other than ALD with close friends. For others, it means connecting with other ALD parents who can listen non-judgmentally about what you’re going through.
Remember: it is okay to not be okay. There will be days that are really challenging and that test your patience and strength. A practice of self-forgiveness is important on those days when you’re not feeling like your best self. Having a journal or outlet to process and share what your family is going through may be helpful for you. You may also find yourself grieving the idea of having a “typical” life. Sometimes it may even seem like “ALD is winning.” These feelings are natural. As you learn to live with your child’s diagnosis of ALD, you will start to feel like you can take greater control over your life again. Be sure to take advantage of volunteers who offer to help so that you can have time for yourself to do what is most energizing and fulfilling for you.
Putting aside time to care for yourself might feel unrealistic, but many of the practices we offer below can be included in your daily or weekly schedule and completed in 10 minutes or less! A small practice goes a long way.
Meditation
Meditation has been practiced worldwide for centuries and more recently became a very popular self-care practice in Western countries. Meditation encourages awareness of your feelings and environment and then teaches you to simply observe these circumstances. One goal of meditation is to teach you to live with the array of emotions you feel daily and promote calmness in the many situations that are outside of your control. Some benefits associated with meditation can include reduced stress and negative emotions, and may help manage symptoms related to anxiety and sleep. A few ways to access meditation guides include apps (Headspace, Calm, Insight Timer), podcasts (Meditation Minis, Mindful in Minutes), YouTube, books by Jon Kabat-Zinn (Creator of Mindfulness-Based Stress Reduction), and in-person individual or group instruction.
Counseling or Therapy
Counselors and therapists apply their knowledge and training in psychology and mental health to better understand the lives of others and guide individuals down avenues to help deal with their struggles. They improve people’s lives by teaching how to understand feelings, emotions, and actions and provide them with skills to navigate and cope with difficult life experiences. Counselors and therapists work with clients individually, with couples or families, or as a group. Therapy may be offered to address short-term or long-term issues. To find a counselor or therapist, call your insurance provider to learn more about mental health coverage and how to get connected with a professional within your network. You also have the option to search for professionals near you through the following sites:
Psychology Today
Good Therapy
BetterHelp
Medication Management
For some individuals, it may be hard to get out of bed, to stop negative thoughts from taking over, and to overcome feelings of guilt. Even if you are already participating in therapy or counseling, you may find that you need more support to improve your daily functioning. Medications can be helpful for reducing negative emotions and improving overall well-being. As a first step, talk to your primary care provider about your symptoms. They may be able to prescribe medication, or they may refer you to a psychiatrist who has expertise in the treatment of mental health concerns with medication options.
Other Ideas
Self-care does not have to be complicated, time consuming, or expensive. It can be as easy as changing your sheets or putting aside 10 minutes to read a book. Exercise is also very important for improving mood, attention, energy, and overall well-being. Try to make time each day for some exercise, such as a 15 to 30 minute walk outside or around the hospital. Other self-care ideas include improving your sleep habits, healthy eating, and spirituality. Visit this blog for more free self-care ideas.
There are many factors to consider as you’re preparing for your child’s treatment – who will be the primary caregiver for your child, where you and your family will stay, and what you should bring to feel more comfortable during your child’s hospitalization. While every family has their own unique preferences and sources of comfort, there are many practical items that may be helpful to consider as you’re packing your bags for the hospital. For your child, you may consider purchasing satin or themed pillowcases, lint rollers, gentle/sensitive skin diaper wipes, shower shoes, and a small light so your child can read at night. You may also consider getting your child some cute hospital gowns or fun pajamas that are easy to take on and off. Don’t forget to bring your child’s favorite blanket, toys, games, and puzzles. You may also want to pack a variety of electronic devices for your child to play with, such as a tablet, phone, or video game console, along with ample chargers. Make sure to pack photos and personalized notes from friends and family or request that your loved ones and friends send them to the hospital. It’s also important to pack a few essentials for yourself or whoever is going to be your child’s primary caregiver. Some recommended items include comfortable clothing, ear plugs for nighttime, and a tablet and/or laptop. A self-adhesive reusable dry erase board and markers may be helpful for communicating messages to hospital staff. A wall calendar is also helpful to remain organized and oriented.
Caring for your own wellness
As you care for your family and juggle many responsibilities, one thing you may notice is that it is easy to neglect your own health while prioritizing everyone else's. We are here to remind you that making time to care for yourself is crucial. You are an important and valued individual that deserves to feel physically, mentally, and emotionally healthy throughout this journey. Before planes depart, flight attendants state if the cabin experiences sudden pressure loss, you should secure your own oxygen mask before helping your children and/or others. Putting on your oxygen mask first means you won’t run out of breath and can help others afterwards. Similarly, prioritizing your health will fuel you to help care for your family too. For some parents and caregivers, self-care means having time to talk about topics other than ALD with close friends. For others, it means connecting with other ALD parents who can listen non-judgmentally about what you’re going through.
Remember: it is okay to not be okay. There will be days that are really challenging and that test your patience and strength. A practice of self-forgiveness is important on those days when you’re not feeling like your best self. Having a journal or outlet to process and share what your family is going through may be helpful for you. You may also find yourself grieving the idea of having a “typical” life. Sometimes it may even seem like “ALD is winning.” These feelings are natural. As you learn to live with your child’s diagnosis of ALD, you will start to feel like you can take greater control over your life again. Be sure to take advantage of volunteers who offer to help so that you can have time for yourself to do what is most energizing and fulfilling for you.
Putting aside time to care for yourself might feel unrealistic, but many of the practices we offer below can be included in your daily or weekly schedule and completed in 10 minutes or less! A small practice goes a long way.
Meditation
Meditation has been practiced worldwide for centuries and more recently became a very popular self-care practice in Western countries. Meditation encourages awareness of your feelings and environment and then teaches you to simply observe these circumstances. One goal of meditation is to teach you to live with the array of emotions you feel daily and promote calmness in the many situations that are outside of your control. Some benefits associated with meditation can include reduced stress and negative emotions, and may help manage symptoms related to anxiety and sleep. A few ways to access meditation guides include apps (Headspace, Calm, Insight Timer), podcasts (Meditation Minis, Mindful in Minutes), YouTube, books by Jon Kabat-Zinn (Creator of Mindfulness-Based Stress Reduction), and in-person individual or group instruction.
Counseling or Therapy
Counselors and therapists apply their knowledge and training in psychology and mental health to better understand the lives of others and guide individuals down avenues to help deal with their struggles. They improve people’s lives by teaching how to understand feelings, emotions, and actions and provide them with skills to navigate and cope with difficult life experiences. Counselors and therapists work with clients individually, with couples or families, or as a group. Therapy may be offered to address short-term or long-term issues. To find a counselor or therapist, call your insurance provider to learn more about mental health coverage and how to get connected with a professional within your network. You also have the option to search for professionals near you through the following sites:
Psychology Today
Good Therapy
BetterHelp
Medication Management
For some individuals, it may be hard to get out of bed, to stop negative thoughts from taking over, and to overcome feelings of guilt. Even if you are already participating in therapy or counseling, you may find that you need more support to improve your daily functioning. Medications can be helpful for reducing negative emotions and improving overall well-being. As a first step, talk to your primary care provider about your symptoms. They may be able to prescribe medication, or they may refer you to a psychiatrist who has expertise in the treatment of mental health concerns with medication options.
Other Ideas
Self-care does not have to be complicated, time consuming, or expensive. It can be as easy as changing your sheets or putting aside 10 minutes to read a book. Exercise is also very important for improving mood, attention, energy, and overall well-being. Try to make time each day for some exercise, such as a 15 to 30 minute walk outside or around the hospital. Other self-care ideas include improving your sleep habits, healthy eating, and spirituality. Visit this blog for more free self-care ideas.
