Rare Disease Support » For Friends and Family

The perspective of family friends

Nora Murphy — Fri, 04 Jun 2010 00:13:33 +0000

Also posted on: The Children’s Rare Disease Network

To know Nora, Ayrie and Shiya is to absolutely love them. Spend an hour with Nora and you’ll see how much she cares for her boys, spend a day with her and you’ll see how strong she fights, spend a couple more years with her and realize what perseverance really means.

Our relationship with Nora started quite simply, “hey, we’re going to go baby-sit for my boss. She has a little boy who has some sort of disease in his throat, so he may talk quietly.” Nora started as Richard’s boss at a charter school in Chicago, and Christa came along for the ride when she found out Richard was going to be watching two boys on his own (one of which was a newborn).

After a night of fun with Ayrie (I think we sang Old McDonald about 30 times), and after a night of realizing how sweet newborns can be, Christa finally worked up the courage to ask Nora what was wrong with Ayrie. A mouthful, at the time, we learned he suffered from a rare disease, Recurrent Respiratory Papillomatosis (RRP). Tumors grew on Ayrie’s vocal chords and made it difficult for him to breathe. He would go into surgery every month or so to have them removed before they spread–it sounded simple enough, right?

I’m not sure if Nora even knows this, but there was a moment when I, Christa, realized the true weight of the situation. I was watching Ayrie, and Nora had set us up with some finger paints. Her sister Emily (a true angel on earth), came into the apartment, and in the next room I could hear Nora crying. I could hear her saying, “what am I going to do?” She came out and she took Ayrie in her arms and just held him, kissed him and hugged him. Pizza shortly arrived, and I remember sitting in her family room and thinking, what would I do if I was in her situation?

We both thought that if you had a child who was suffering from a rare disease that you just curled up, you cried, you shut yourself out from the world. A naive perspective, we know, because Nora did the exact opposite. She fought for her son. She sought out the best medical care and found it! She was determined to establish a support system for other parents and guardians who are helping to fight alongside their loved ones as they battle rare diseases.

So what has Nora taught us? She’s taught us simply to never give up! While we’re training for the Chicago Half Marathon (we’re running in honor of Ayrie), we’re thinking of her and the boys. We’re realizing how lucky we are to be able to suck in another gulp of fresh air. Sure quitting is easy, but pushing through, persevering is what changes the world. We have no doubt that is what Nora is doing. We’re honored, proud and incredibly lucky to have had our lives cross paths.

By Christa Koskosky of Running for Ayrie Blog.

what can families do to help everyone thrive?

Nora Murphy — Sun, 28 Mar 2010 17:11:20 +0000

Again, this is copied from a fantastic resources provided by the University of Minnesota’s Health Systems. If you are a parent, reading this list might reassure you that you are already making good choices! For friends, you might get ideas for areas where you can offer a family support.

Stay involved and give information

Discuss with your child (at their age level) what their illness is all about, and what will happen to them in the hospital. When you don’t do this, kids may imagine the worst.

Plan for procedures

Unexpected stress is more difficult to cope with than anticipated stress. Some procedures can cause physical and psychological distress. Some children do better with several days to prepare, while others worry themselves sick. Good communication and flexibility are essential.

Give children choices

Some tasks for children with chronic illness must be done no matter what. Others are more flexible. Know what tasks are mandatory (scheduled medications, specific diets) and which are open for discussion (“as-needed” medicines, choice of foods within a given diet). Conflict may arise when a child tries to assert independence. As preschoolers, and even older kids test adults’ limits, there is natural conflict with adults’ demands. Children with chronic illness, more than other kids, need chances to make choices—to have control over any part of their lives they can control.

Support children’s friendships and activities with peers

Illness often interferes with routines and activities. For children and teens, a particularly devastating consequence can be the weakening or loss of friendships. Friends can grow apart as a result of these changes. Keeping kids involved with their peers and making extra efforts to maintain those connections can go a long way in helping a kid cope with an illness. Helping your child to find new ways to make and maintain new relationships is critical during this time. You may also need to help your child find ways to cope with teasing from peers. Here’s help:

Easing the Teasing: How Parents Can Help Their Children

Children need to feel like they belong. Their peer relationships are an important arena for them to do this. Try to help your child find interests and activities that provide opportunities to connect with other kids with similar illnesses. Give them opportunities to spend time with friends. Teens need to be exposed to other caring adults they can trust. Contact with these adults should be encouraged in order to help shape the direction of their lives and provide stability. Most major hospitals and clinics can help you find support groups for parents, families, and for children affected by the illness.

Be hopeful

Coping with a chronic illness can be discouraging and scary. It is incredibly important to stay hopeful. Don’t ignore your worries or your negative feelings—they need to be recognized and addressed. But it’s not helpful to dwell on them. If you try to find the positive side of things and keep your eye on the potential positive outcomes, you will be teaching your child a valuable lesson, and maintaining your ability to cope as well.

Listen

Be available so your child can talk about the problems they are facing. Ask them how it’s going, and listen to the answer. Listen to their troubles and help them find solutions to their problems. Be able to recognize the warning signs of depression. If your child talks about suicide, take it seriously. Allow your child to express their fears; validate your child’s feelings. There’s nothing worse than feeling scared and confused and not being able to talk about it. Find out more about depression in children and adolescents with chronic illnesses. More on recognizing depression in children and adolescents—also available in Spanish, Chinese and Korean.

Be flexible

To help your child adapt to their illness, you will need to both recognize their limitations and help them to continue with life as usual, whenever possible.

Have fun together as a family

You can expect the whole family to be under increased stress. Maintaining your commitment to your family and getting support from each other may be harder during times of stress, but it is also even more important! Spend time together that is not focused on the illness. To carve out time for family activities you may need to schedule family time, including one-on-one time for parents and parent-child “dates,” as well as whole family activities.

Involve the whole family and even an extended support network

Allow each family member to help in any way that they are willing and able. Seek support and help from people outside your immediate family, such as through your extended family, school, religious community, neighborhood, or children’s hospital. People you know will generally be very pleased if they can help, such as bringing over a meal, having your other children over to play, or even just lending a listening ear. Often folks don’t know exactly what you need-so don’t wait for them to offer it. If someone gives you a generic offer of help, tell them what you need specifically, and ask if they can do it for you. You’ll be surprised at how glad people are to be able to do what’s needed for your family.

Teach coping skills

Parents need to help children learn new ways to cope with the special challenges of an illness. Discussing with a teen how their illness is affecting him or her and finding ways to help solve problems or cope with the feelings is very helpful. They can learn to build on their strengths and can even develop pride in their abilities to meet the challenges. You can do a lot to help your child cope with the stress that comes with a chronic illness. There are many ways you can help your child build resiliency.

Don’t let your kids hear more than you intend

If your conversations are private have them away from your children. Kids hear more than you may think; don’t assume they are sleeping when their eyes are closed.

Coordinate with your child’s school

When your child with special health needs goes to school, good communication between your family and school is very important. This handout includes a checklist to help parents prepare for school and a place to keep track of important phone numbers. It is also available in Spanish, Russian, andVietnamese.

Take care of yourself and stick to your family routine

Caregivers/parents need to take good care of themselves—otherwise, they won’t be able to givegood care! Talk with other parents who have children with special health care needs, carve out time to do something you enjoy, get support, find someone to listen to you vent, take breaks, spend time with your partner, and learn to deal positively with your stress. If you can keep your family routine as normal as possible, that will help, too.

- Keeping Family Routine when a Child is Seriously Ill
- Becoming a Resilient Family: Child Diability and the Family System
Make use of respite care

Everyone needs a break once in a while—especially the parents of kids with special needs. Respite care is short-term, specialized childcare. Respite care services can help keep family caregivers from getting burned out.

- To find out more, check out this Q&A on respite care.
- Respite Care, a publication from NICHCY, has more information, but the list of resources may be somewhat out of date. Use NICHCY’s state resource pages to locate your state’s vocational rehabilitation, ARC, and parent training and information center to find out whether any of these can help with finding respite care.
- The ARCH National Respite Network and Resource Center has a National Respite Locator Service, and State Respite Coalition listings.
- In Michigan, for a child under age 3, contact Early On for help finding respite care. If your child under age 20 needs special medical care, you may qualify for help from Children’s Special Health Care Services. In some Michigan counties, the local ARC may be able to help. If you have the financial resources, you could try to find a private home health care provider or respite center in your area.
- You may want to use childcare services to give yourself a break. Find out about Choosing quality childcare for a child with special needs—this pamphlet, also available in Spanish, will help answer your questions. Read more in this article about the benefits of inclusive programs.
Remember your other children

Siblings will need extra attention, and may need counseling; they can experience jealousy, anger, and depression. It’s important that you address their fears, concerns, and grief, and make sure they don’t feel pushed aside.

Stay organized

Getting organized will lower the overall stress level in your family. One helpful tip is to keep all of your child’s information in one place. A care notebook can become a lifesaver. Here are someresources for putting together your own Care Notebook. Write everything down-don’t count on your memory. If you have it all in writing, you can relax more. Keep a running list of questions, so that you will remember what to ask at medical visits.

Be aware of the risks unique to your child’s illness:

It’s important to be very familiar with your child’s illness, no matter how scary it is. If children feel like they know more than you, they will feel responsible for protecting you. Read as much as you can about your child’s illness. The more knowledge you have, the more likely you will be able to obtain the best care for your child. If you want more information about your child’s chronic illness or health condition ask your county public health nurses, or the child’s health care provider. Keep a written list of questions that come up, so you can ask at each medical visit. Don’t hesitate to call your child’s doctor with your questions or concerns.

What to Say When a Friend’s Child is Diagnosed With a Disbability?

Nora Murphy — Sat, 06 Feb 2010 02:06:16 +0000

Sometimes people don’t know what to say to me. And that’s okay. If the roles were reversed I think I would feel the same. But there must be some information out there that helps you know what to say when your friend or loved one is going through a hard time because their child has a disease, illness or disorder. I found this advice here, written by Betsey Kirkemo, and I’d love to hear your feedback or other suggestions.

1. Resist all temptations to utter clichés. While well meaning and often true, these off-the-cuff statements often contain messages that the parent is unable to comprehend, and it comes across as dismissive, uncaring and condescending. Imagine how she might feel upon hearing, “God only gives us what we can handle” or “You should feel blessed that God chose you to be the parent” or “It is what it is”. While clichés are often true, they are unwelcome and not compatible with allowing someone to grieve.

2. Offer to cry with them. The most isolating experience I’ve ever felt was being unable to express my grieving with friends who were unwilling to allow me to express my emotions. Grieving is natural and completely warranted, and what we need the most to process and work through how we feel so we can become good advocates. Grieving? You may think that grieving is isolated to death or divorce, but it’s a process we parents of special needs children understand and must endure over a lifetime.

We grieve the fact that our kids will never be able to grow up typically… to graduate high school… to attend college… to leave home and be able to support themselves… to make qualified decisions on their own… to marry and have children. The lessons are never far behind us, and if we become too complacent, another challenge rears its ugly head and forces us to continue mastering the lesson of grieving once again.

3. Interact with our child the way you would interact with your own child’s friends. Our child perceives and learns differently, but what we want most for him or her is to be treated like any other child.

4. Avoid telling them how you think they should feel. Chances are they won’t appreciate hearing “You shouldn’t feel that way…” Feelings just are, and like snapshots, they only reflect the moment the picture was taken. It doesn’t mean they feel that way ALL of the time. Validate the feeling and know that they will return the favor some day.

5. Learn how to be a compassionate and sympathetic listener. This is true for all of our friendships, and it’s what builds intimacy and commonality. It doesn’t require you to fix or to offer solutions-just listen and offer support.

6. Don’t avoid sharing your own stories with them. We love being friends too, and we relish your own family’s accomplishments. It bridges the gap between support and isolation.

7. Don’t dismiss their worries as crazy or negative thinking. When my ex-husband and I began the tedious chore of establishing a special needs trust for our daughter, a few friends were horrified to hear of the intricate details we were discussing. Part of our estate planning assumes that our daughter will not be able to make decisions for herself, so we had to account for every possible scenario if we were to die. We were told that we were excessively morbid and accused of not thinking positively, when the simple truth was we were being realistic and wise.