Real Families: Real Suggestions for Everyday Living | The Center for Children with Special Needs

Parents share ideas and strategies for managing their child’s special health care needs in daily life.

Real Families Real Suggestions Raising a child with special health care needs can be a complex and demanding job. Parents manage their child’s health and developmental needs while juggling the rest of their family’s life. Many parents say there is little information about how to manage their child’s ongoing health care needs in the context of their daily life. Parents who participated in the Building on Family Strengths (BFS) project were asked to share their concerns and discuss what helps them deal with everyday challenges.

For each challenge listed below, you will find strategies that helped these parents manage their situations. Remember that working on a strategy to meet a challenge is an individual process — take your time, think about small steps, and choose what feels right for you.

Please choose a challenge category that best fits your needs:

Funding for the Building on Family Strengths (BFS) project which ended September 2008, was awarded by the Agency for Health Research and Quality, US Department of Health and Human Services grant #R01 HSO13384.

After 20 years serving families of children with special needs, due to a loss of state funding, the Center for Children with Special Needs has closed its doors effective September 30, 2018. During the coming months, many resources on CSHCN.org will become available on SeattleChildrens.org.

It has been a pleasure serving you, getting to meet you, and helping you find resources for your child.

Thank you.

What if we are in crisis?

Photo by Jametlene Reskp on Unsplash Suicide
• National Suicide Prevention Lifeline 1-800-273-8255 (TTY 1-800-799-4889) . The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones.

• Crisis Text Line: Help is available 24 hours a day throughout the US by texting START to 741741 . The person texting is connected live with a Crisis Counselor, trained to bring people from a crisis moment to a calmer state through active listening and collaborative problem solving.

For Teens
• Teen Link: anonymous help phone line for teens. 866-833-6546 Evenings, 6:00pm- 10:00pm (866TeenLink.org). From: dshs.wa.gov/bha/division-behavioral-health-and-recovery/childrens-behavioral-health
• TXT 4 HELP Interactive: Created by National Safe Place. Allows youth to text live with a mental health professional.

Finding Local Mental Health Programs
• Washington Recovery Help Line 1-866-789-1511 or warecoveryhelpline.org. 24-hour emotional support and referrals for substance abuse, problem gambling and mental health.

Substance Abuse
• Substance Abuse Hotline: 1-800-662-4357. Free, confidential, 24/7, 365-day-a-year treatment referral and information service (in English and Spanish) for individuals and families facing mental and/or substance use disorders.
• Washington Recovery Help Line: 1-866-789-1511 or warecoveryhelpline.org. For substance abuse, mental health and gambling- 24-hour emotional support and referrals.

For more information visit “Find Help in a Crisis” from the National Alliance on Mental Illness (NAMI).

What are helpful resources and websites?

These websites have in-depth information on mental health conditions as well as ideas for how to deal with challenges and manage day to day with your child. They include resources for school, helping family members understand your child’s diagnosis and strategies to use at home.

AACAP: The American Academy of Child and Adolescent Psychiatry

Child Mind: Child Mind Institute

NAMI Washington: National Alliance on Mental Health

Children’s Mental Health / Behavioral Disorders Program: from PACER (Parent Information and Information Center) includes helpful experience based tips from parents and teens.

Anxiety BC and Anxiety BC Youth: online, self-help, and evidence-based resources on anxiety and anxiety disorders.

Where can I get support?

Many parents feel alone and isolated in this experience with their child. Dealing with a mental health condition and behaviors takes time, is stressful and can have an impact on your health and well-being. Know that there are many parents who have gone through similar challenges. Here are some tips from other parents who have faced similar experiences:

Visit the National Alliance on Mental Illness -Washington (NAMI) for support and information.

Connect with other parents. Having a child with a mental illness can be isolating. Connecting with other parents who can relate and understand what you are going through may help you feel better. Other parents may share tips for coping and ideas on finding services and therapists. Hearing other parents’ stories can bring you relief. It can be helpful to know that you are not the only family that has experienced what you have gone through. A great way to do this is through a support group or information classes for parents of children and youth with mental health conditions. Visit the Washington State National Alliance on Mental Illness to find a group near you.

Take a class. The NAMI Basics class is for parents and other family caregivers of children and adolescents who have either been diagnosed with a mental health condition or who are experiencing symptoms but have not yet been diagnosed. Visit: www.nami.org to find a class near you.

Don’t give up hope. This can be a very difficult journey and it can take time to find the right treatment and services, but other parents say that it won’t last forever.

Take care of yourself. Caring for a child with a mental health condition, going to therapy and following treatment plans takes time and energy. Find ways to take care of yourself when and where you can. Read these tips from NAMI for taking care of yourself.

How can I find a mental health provider for my child?

Photo by Daniel Gonzalez on Unsplash Learn About Mental Treatment and Providers

It is very important to find the right mental health provider for your child’s condition and behaviors. Not all therapists treat all conditions. Some conditions respond well to specific types of treatments and parent training. Not all therapists are trained in these treatments and parent training. Read “Choosing a Mental Health Provider” for guidelines on what kinds of providers and treatments to look for.

Search
My child has Apple Health coverage or Medicaid

Read the behavioral health treatment guide to learn more about behavioral health services and how to find a provider. Find more information on mental health services for children at the Washington State Healthcare Authority.

We have private insurance
If you have private insurance contact your insurance provider for a list of mental health therapists. Know that it may take many phone calls and time to get in to see someone.

Use a search engine to find a mental health or substance abuse treatment provider:

Find a Therapist* from Psychology Today
Behavioral Health Treatment Services Locator* Substance Abuse and Mental Health Services Administration.

*Therapists on these websites have not been vetted by The Center for Children with Special Needs nor does listing imply endorsement.

Ask
It is important to ask a lot of questions of a potential provider to make sure they have experience treating children and teens with your child’s diagnosis. The Parent Guide to Getting Good Care covers what to look for in a diagnosis, who can provide treatment, questions to ask before beginning treatment, dealing with more than one diagnosis, learning issues and how to get school services.

If I have a concern about my child or teen, where do I get them evaluated?

What to Do if You Notice Symptoms

If you see symptoms or have concerns about your child or teen, you may want to schedule an appointment for an evaluation with a licensed psychiatrist or psychologist. If you can’t do that, then meet with your child’s doctor. It will be important and helpful for you to provide them as much detailed information about your concerns as you can.

What if I can’t get an appointment with a psychiatrist or psychologist for some time?

Share information about the Washington State PAL: Partnership Access Line (PAL) with your child’s primary care provider. PAL is a telephone-based child mental health consultation system for any primary care provider in Washington. Toll-Free: 866-599-7257.When they call PAL, they will receive:

Advice from a child psychiatrist
Tools to help you and your child, including rating scales, websites and local resources tailored to your child’s condition.

What are signs that my child or teen may have a mental health condition?

Check Symptoms
Early identification and treatment can help your teen get the help and information they need. Share this youth questionnaire with your teen if they have concerns about their emotions, attention or behaviors. You can take the parent screening questionnaire to help identify if your child is at risk for emotional, attention or behavior difficulties and if you should seek an evaluation with a mental health professional.

You may also use the symptom checker to check behaviors and signs you are concerned about. The Symptom Checker will give you a list of possible mental health or learning disorders that align with those symptoms. (This is not a diagnostic tool, but a guide to help you take the next step).

When to seek help
It can be hard to decide when and if you should get your child evaluated. How do you know if it is a serious concern or typical development? When is it time to reach out for help? Read “Does my Child have an Emotional or Behavior Disorder” for tips on when to know your child and family may need help and where to start.

You can also use this checklist from the American Academy of Child and Adolescent Psychiatry of signs for younger children, pre-teens and teens to see if your child may need to be evaluated by a professional.

Early identification and treatment can help your teen get the help and information they need. Share this youth questionnaire with your teen if they have concerns about their emotions, attention or behaviors. Take the parent screening questionnaire to help you identify if your child is at risk for emotional, attention or behavior difficulties and if you should seek an evaluation with a mental health professional.

Kinds of Mental Health Conditions

Photo by Joseph Gonzalez on Unsplash Find information on different mental health conditions that children and teens face. These resources include information on symptoms, treatment and getting diagnosed.