Helping your child adjust

• Acknowledge your child's feelings about their diagnosis. Your child may be angry, upset, or scared. This is normal and expected. Give your child comfort. But don't shelter your child from the truth about their condition.Give your child information in an age-appropriate manner. If you're not sure how to do so, ask your child's provider for help.

• Check in with your child often about:

  • How they are feeling, emotionally and physically

  • If they have questions about the illness and the reasons for certain parts of the treatment plan

  • If they are following the treatment plan

  • If your child wants you to do more or less to help (let your child tell you how much responsibility they feel able to handle)

• Praise your child for taking an active part in their treatment and following directions without resistance.

• Encourage your child to write down questions they have about their condition and ask providers during office visits.

• Check to see if there are peer support groups for your child's condition in your area. Give your child the information, but don't force them to go.

• Don't yell or get angry if your child won't follow their treatment plan entirely. Instead, work with your child and their healthcare provider. Discuss ways to adjust the treatment plan so your child will be more willing to follow it.

• Let your teen be a teen. As much as possible, let your child do things that their friends are doing (such as sports, after-school activities, and field trips).

• It's not uncommon for a responsible teen to burn out on taking care of a chronic illness. If this happens, it's OK for you to take over some responsibilities from your child until they're ready to take them back.

Keeping your perspective

After the diagnosis of a chronic illness, you and your child have new challenges. But never forget that your child is still a child. Don't let the illness dictate how you parent or change your relationship with your child. Here are some tips:

• Stick to your rules. Maintain discipline, rules, and boundaries for your child. Don't let your child off the hook in terms of behavior or responsibility because of the illness.

• Don’t be overprotective or overbearing. You may be tempted to control your child's choices and actions to help keep them safe. But this will hurt your child in the long run. Let your child take some responsibility. This may mean that your child makes mistakes. But learning from mistakes is an important part of growing up.

• Keep it normal. Treat your child like a normal teen as much as possible.

• Be sensitive to your other children's needs. Siblings may show fear and anger about both the changes in family dynamics and the attention required by the brother or sister with the chronic illness. This is especially true if the illness is unstable and requires frequent emergency room visits or hospitalizations. Sibling support groups can be especially helpful in these situations. Your healthcare provider or school counselor and school psychologist may be able to provide resources for siblings.

Following up with your child's healthcare provider

Make sure your child sees their healthcare provider regularly. But don't let the chronic illness overshadow the rest of their healthcare needs. Take your child to see a primary care provider for regular checkups and to discuss normal teen concerns.

Watching for anxiety or depression

It's normal for your child to have challengesas they adjust to living with a chronic condition. In the short term, worry, sadness, or fear is to be expected. But if they last, they may be signs of a more serious problem. Tell your child's healthcare provider right away if you notice any of these:

• Excessive crying

• Big changes in appetite or weight

• Not sleeping or sleeping too much

• Talking about feeling hopeless or worthless

• Loss of interest in family, friends, or activities that were once enjoyed

• Increase in reckless or risk-taking behavior including the use of alcohol and illegal drugs

• Increased irritability

• Talking about death or suicide

When to get help

Family and friends are often the first to recognize the warning signs of suicide. Suicidal thoughts or actions are not a harmless bid for attention. They are a sign of extreme stress and shouldn't be ignored.

Get help from people or agencies specializing in crisis such as:

• National Suicide Prevention Lifelinewww.suicidepreventionlifeline.org800-273-TALK (8255)

• National Institute of Mental Health www.nimh.nih.gov 866-615-6464

• National Alliance on Mental Illness www.nami.org 800-950-6264

• Mental Health America www.nmha.org 800-969-6642

Be sure your teen and close family and friends also have these resources.

Call or text 988

If your teen is at immediate risk of harming themselves or others call or text 988Don't leave them alone.Take action. Remove anything that can cause harm, like guns, rope, or stockpiled pills.

When you call or text 988, you will be connected to trained crisis counselors at the National Suicide Prevention Lifeline. An online chat option is also available at www.suicidepreventionlifeline.org. Lifeline is free and available 24/7. 988 counselors will help you get the help you need.

Getting support

When your teen has a serious chronic illness, it affects everyone in the family. Ask your child's healthcare provider and your child's school for resources and support to help with your teen's illness. Reach out to friends and family for help.

Consider a support group. There are groups for specific conditions. In a support group, you and your teen can talk with others in the same situation. These groups can offer advice, help, and understanding. There are groups for parents, teens, siblings, and families. Ask your child's healthcare provider or other providers about local support groups. Or call your local hospital and ask for referrals. Below are questions to ask.

• What resources are available in our community to help with my teen's chronic illness?

• How can I encourage my teen's growing independence but still give them the right amount of help?

• Is there a support group for teens with their diagnosis?

• Does the school, clinic, or hospital offer support staff or services to help my teen and family, including siblings?

• How can I support my teen's education? Work with teachers to help your teen keep up with schoolwork. Your teen should qualify for school accommodations under Section 504 of the Rehabilitation Act of 1973. Your child's healthcare provider can assist your child in getting these accommodations by writing a letter to the school.