Discuss with your [...]]]> 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.

“My sister has been struggling to take care of herself and her family through her son’s illness over the past two years.  What else can I do to show her that I am here for her?”

“My cousin just lost her daughter to a rare [...]]]> “My friend’s child was just diagnosed with a rare disease.  What do I say?”

“My sister has been struggling to take care of herself and her family through her son’s illness over the past two years.  What else can I do to show her that I am here for her?”

“My cousin just lost her daughter to a rare disease and regular greeting cards seem wrong.  But I want to send something to show my support.”

If you have had thoughts like these, you are going to love these cards.  As a caregiver myself, I had tears running down my face when I read these cards from Solace Creek.  The speak from the heart as the founders, Mary and Mark Peters, have together endured the diagnosis and ongoing treatment of Cystic Fibrosis in the youngest of their four children, and of stage-3 Breast Cancer in Mary.

I’ve post two below to give you an idea of what they are like, but you can visit the website directly to see more cards and gift ideas.  Click here to be directed to the Solace Creek website.

Front: For surely you did not choose this battle ~ Rather it chose you

Inside: Inspired by your warrior spirit ~ I am here for you ~ Ready to fight at your side

Front: When the Caregiver load ~ Takes its toll

Inside: I will renew and care for you

Ayrie’s breathing is deteriorating.  I don’t know if it’s regrowth of the papillomas blocking his airway or a side-effect of the medicine he takes.  I don’t want [...]]]> For those of you who are new to this website, my son has JORRP, which you can read about here, and you can read more about his story here.

Ayrie’s breathing is deteriorating.  I don’t know if it’s regrowth of the papillomas blocking his airway or a side-effect of the medicine he takes.  I don’t want to goto the local hospital where they know nothing about this disease and have them admit ayrie, run a lot of tests that don’t give them the right information and then force me to sign him out against medical orders.

So we are flying to Boston today for an emergency surgery in the afternoon. I only had twelve hours notice.  (Thank you, Dr. Hartnick, for being so accommodating!)  Cost for plane tickets? $1800. So I called agencies that help people who have to travel more than 1,000 miles for medical treatment and you know what they all told me? They need a month’s notice! Seriously? For people who have diseases that are predictable!!??  Yes, they said.  There are papers to be faxed in, signatures to collect.  I said, if I could plan around this disease I would still have a full time paying job.  If I have a job with a good salary I wouldn’t need to call you for help.  Aren’t we exactly the type of family that you are supposed to be supporting?  (ie. our lives are turned upside down by a rare disease and we have to travel to get care that helps our kids rather than harms them and we never know how we are quite going to make all of this work)

It’s ludicrous and I’m mad. This is what happens all the time.  I am told, “Oh, there are so many grants/supports for families in your situation.”  But when I actually try to access the grants/supports that are barriers that make everything inaccessible.   I feel like half of my time is spent managing the non-disease portion of this disease.

Okay.  That’s my rant for today.  Thanks for reading!

nora