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Family Caregivers of Children with Mental Health Needs

I still remember the presenter at a workshop who mentioned that parents of children with challenging behaviors are the second most stressed families of children with special needs. The other is those with severe medical conditions. We’re dealing with both as my daughter has autism and is currently on the transplant list for a new kidney, so hopefully I can share what I’ve learned to help you on your journey as a caregiver of a child with mental health issues.

I had a “light bulb moment” when I realized that not every mom was still diapering and feeding their 5-year-old. It was then that I recognized I also had an extra role as a caregiver, which could possibly be lifelong. I remember hearing from National Family Caregivers (NFCA) (www.thefamilycaregiver.org) that caregivers may not have all the choices they had before, or even like all of their choices, but they still had the power to choose. In our case initially it was dialysis vs. transplant, then narrowing down to the different types of dialysis or different ways to do transplant. It was very empowering to recognize that the decisions, although difficult, were ours.

NFCA basically helps caregivers take care of themselves while caring for another family member. You won’t do anyone any good riding on “empty”. By taking care of yourself, you can take better care of your child. Also, the number one concern for caregivers is finding respite to take a break. More people enter institutional care due to caregiver burnout, rather than deterioration of their condition. There is a national respite resource found at http://chtop.org/ARCH/National-Respite-Locator.html to assist caregivers in finding help locally.

I also discovered that by finding out as much as I could about my daughter’s condition, I didn’t feel as helpless. I used the Exceptional Parent resource guide which listed all the national organizations for specific conditions; a free copy of their pocket guide is available by calling (800) E-PARENT.

One-to-one support was the best initial source of emotional strength. I found great support from both Parent-to-Parent (www.p2pusa.org) which matches trained volunteer parents to families of children with the same condition, as does Friends Health Connection at (800) 48-FRIEND. They also have an online community and workshops at www.friendshealthconnection.org.

It wasn’t until my daughter was 7 that she was diagnosed as having autism. She was also threatening to kill herself, or us. I found that many of the autism groups do not associate autism spectrum disorder as mental illness, even though it is listed in the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders). The mental health field is also catching up in the area of developmental disabilities, and there is now some crossover of resources for those with a dual diagnosis (mental health/developmental disability).

I found that the Federation of Families for Children’s Mental Health was a good source of information and support which can be found at www.ffcmh.org, including state chapters with local resources. Each state also has a Family to Family Health Information Center, which you can find at www.familyvoices.org. Another great resource is the Parent Training and Information Centers found in each state at www.taalliance.org/ptidirectory/index.asp. PTI’s can help parents with special education issues as well as advocacy in areas such as inappropriate use of restraints or not signing away parental rights to get treatment.

The best source of support, however, was from the National Alliance on Mental Illness found at www.nami.org. NAMI has parent classes, advocacy, support groups, NAMI Kids (recreational and service outings in the community), and free conference calls including “Ask the Doctor” etc. They can also help families with issues such as minor consent for mental health treatment, and involuntary treatment, as laws vary among states. NAMI’s philosophy is that a brain disorder is a brain disorder, period. It doesn’t matter if it’s childhood schizophrenia, bipolar, autism, ADHD, Tourette’s etc. They help parents realize that mental illness is like any other illness, but the organ affected just happens to be the brain, which manifests as behavior. NAMI reduces the stigma associated with mental illness. For example, you wouldn’t blame a child for having heart disease. They also use people first language, rather than defining them by their illness. For example, you wouldn’t say someone is cancer but that they have cancer. As some children with mental illness require medication, NAMI reduces the stigma with the analogy that mental illnesses are biologically based brain disorders, and you wouldn’t deny someone with diabetes insulin to balance out their body chemistry, so mental illness is no different. Getting past the inappropriate shame and blame allows parents to take better care of themselves as well as their children with special mental health needs.

Lastly, for a comprehensive national listing of children’s mental health resources, (including websites, articles, databases) for both parents and professionals, there is the Maternal & Child Health Knowledge Path found at www.mchlibrary.info/KnowledgePaths/kp_Mental_Conditions.html. There is also a preventive/wellness path at www.mchlibrary.info/KnowledgePaths/kp_Mental_Healthy.html.

Lauren Agoratus is the parent of a child with autism/kidney disease. She is the NJ Coordinator of Family Voices, the national network that advocates on behalf of children with special healthcare needs. Families can find free help in their state at www.familyvoices.org/states.php. She is also volunteer NJ Caregiver Community Action Network representative for National Family Caregivers Association found at www.thefamilycaregiver.org.

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