Stress, PTSD, and Parents of Kids with Special Needs

by jphilo | Feb 20, 2015 | Different Dream, In Parents, PTSD

Stress, PTSD, and Parents of Kids with Special Needs

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Recent studies have shown that parents of kids with special needs are at a greater risk of developing Post Traumatic Stress Disorder (PTSD) than are parents of typical kids. Over the next weeks, Different Dream will address the subject of PTSD and parents of kids with special needs. In today’s post guest blogger, Dr. Liz Matheis offers information and advice to parents who suspect they have PTSD about how to manage day to day.

Stress, PTSD and Parents of Kids with Special Needs

As a professional, the initial phone call comes with a focus on the child with Autism Spectrum Disorder (ASD). However, I have often asked during our first appointment, “How are you, as the parent, doing?” Several parents have looked at me somewhat crooked and have said either, “Fine,” or “No one has ever asked me how I’m doing.” As a parent of a child with ASD, the process of gaining a diagnosis and then living and treating can be overwhelming and often traumatizing. With that said, it is safe to say that many parents of children with ASD are suffering from Post Traumatic Stress Disorder (PTSD).

What Is PTSD and What Are the Signs?

PTSD is an anxiety-based disorder that occurs when a person has experienced trauma, witnessed trauma, has been exposed to the details of a traumatic event experienced by another person, or by repeated exposure to trauma, such as a trauma professional. Signs and symptoms include flashbacks, nightmares, inability to concentrate, prolonged distress, and physiological reactivity (that is jumpy or hyper-vigilant).

How Does a Parent Develop PTSD?

For the parent of a child with ASD, the initial trauma comes from realizing that ‘something isn’t right’ with her child, researching, and ultimately gaining the diagnosis. This trauma is perpetuated when a parent begins to mourn and grieve the loss of the child that he thought he would have. The next phase is gaining treatment and not being entirely sure how it will work and what the outcome will be. Then, adolescence hits and some children with ASD become aggressive. Some kids have been aggressive all along. As a result, parents are left defending themselves, hiding bruises, and staying at home so that ‘no one else’ can witness the physical aggression. This becomes even more complicated when there are other children in the home who parents struggle to give attention, nurturance and time to but can’t because taking care of a child with ASD can sometimes be a 24 hour job.

Raising a child with ASD can also take a toll on a marriage. Parents are left to care with little time for themselves as a couple. Finding someone else to care for the child is difficult. That caretaker or babysitter needs to be trained and be okay with some physical aggression and meltdowns. And the icing on the cake is that some families become one income households so that one parent can take care of the multiple needs and therapies for the child with ASD, meaning that money can be tight, which is another source of distress for parents. Sometimes the marriage doesn’t survive.

Parents are also left anticipating what might trigger their child and are constantly accommodating and modifying the environment to help their child to stay calm or regulated. As children with ASD get older, some parents of children who are aggressive have to make a very tough decision about whether or not to find a residential program.

Throughout this process that takes place over years and years, parents become burned out, distressed, anxious, depressed and sometimes even feel hopeless and helpless.

How to Gain Help for PTSD

For those families that are eligible, finding community and state-based resources such as Division of Developmental Disabilities (DDD) which can offer respite care. That is, for a few hours per month, a DDD representative will take care of the child with ASD so that parents can have a break. (To find the DDD in your state, do an internet search with the terms “division of developmental disabilities” and the name of your state.)

For parents who feel distressed, seek help. Consult with a psychologist to help you process your emotions and your experience, and offer you support throughout your journey. If feelings of nervousness or sadness become overwhelming, it is okay to consult with a psychiatrist for anti-anxiety or anti-depressant medication. It is okay for parents to seek help for themselves instead of maintaining a 100% focus on their child with ASD.
If your child’s school offers parent support groups, participate in them. Talk to the other parents who are also experiencing the same types of stressors and emotions. Find solace in each other. Have play dates with each other. Offer respite to each other.

Your Experience with PTSD and Parents of Kids with Special Needs?

If you have advice for stressed-out parents of kids with special needs or if you think you have PTSD, leave a comment in the box below. You can also contact me via email using this form.

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Dr. Liz Matheis is a clinical psychologist and school psychologist in Parsippany, NJ. She offers support, assessments, and advocacy for children who are managing Autism Spectrum Disorders, ADHD, learning disabilities, and behavioral difficulties, as well as their families. She is also a contributor to several popular magazines. Visit www.psychedconsult.com for more information.

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PTSD and Nursing Moms

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Hello, Different Dream readers! Welcome to a guest post from my good friends and fellow PTSD advocates, Shelly Beach and Wanda Sanchez. This post about PTSD and nursing mothers first appeared at their blog, PTSD Perspectives. It addresses many issues of importance to the special needs community, so I was delighted when Beach and Sanchez gave permission to repost it here.

PTSD and Nursing Moms

Most expectant and new mothers envision nursing to be the ultimate bonding experience with their child. Unfortunately, this isn’t always the case. Sadly, post-traumatic stress disorder can be a contributing factor, and women may not be aware of the cause-and-effect relationship in order to be able to best address their frustrations. I recently spoke to several young mothers who talked candidly about how trauma influenced their ability to bond with their newborn babies. None of these women were prepared for the challenges they faced, and they basically had to figure out on their own that their post-traumatic stress had contributed to their struggles.

PTSD and Nursing Moms: NICU Trauma

One of the mothers I spoke to gave birth vaginally, and her newborn girl experienced medical complications that placed her in the neonatal intensive care unit for nearly two weeks. During this time, both Mom and baby experienced high levels of stress and anxiety, due to the separation, limited bonding time, and painful medical procedures. Because of the anxiety and separation, Mom’s lactation diminished, and her attempts to maintain her milk supply were frustrating. After taking her little girl home from the hospital after a highly stressful two-week stay, Mom attempted nursing for two more weeks, but her child struggled to latch and preferred a bottle. At four weeks, Mom gave up and was overwhelmed with guilt at her “failure.” Two years later, Baby #2 came along, and Mom struggled with anxiety at the thought of nursing. Her stress made it difficult for her to relax enough for her milk to let down when she attempted to nurse, and after a week, she decided that bottle feeding would be the best choice for Baby.

PTSD and Nursing Moms : Previous Trauma

A second mother I spoke two had experienced multiple sexual assaults as a teenager. In her mid-twenties she married a supportive, loving husband, and several years later she gave birth to their first child. However, “Sue” was guilt-ridden and heartbroken to discover that nursing her child was a trauma trigger. For weeks she struggled to be a “good” mom and breast-feed her child but found that the only way she could successfully nurse her child was to dissociate. A desire to be a “good” mom like other moms drove her to continue nursing for months, even though she felt it was affecting her ability to bond with her baby. When “Sue’s” second child was born, she made the decision to bottle feed. She told me that she has never regretted that choice and wished she ‘d had a better understanding of how PTSD could influence a woman’s nursing experience before she’d given birth to her first child.

PTSD and Nursing Moms: How to Find Help

Twenty-five percent of women experience sexual abuse in their lifetime–many before the birth of their first child. It’s important for women to know how their trauma experiences may influence aspects of their lives so they can make the best choices for their circumstances. If you or someone you know can relate to the challenges of nursing your child because of a prior trauma experience:

Talk to a trauma specialists who can offer you suggestions about how to process your experience.
Accept the simple truth that breast feeding does not define good mothering.
Find other mothers who bottle fed their kids to lean on for support.
Release the false guilt.
Talk about your situation with someone who will understand and support you.
Seek out treatment or support if you’re experiencing depression.

More PTSD Perspectives

Did PTSD impact your ability to nurse your babies? How did you deal with the situation? Leave a comment, if you like, in the box below. To learn more about the work Shelly and Wanda do, visit their website, PTSD Perspectives.

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Shelly Beach is an award-winning author of eight books, including The Silent Seduction of Self Talk. She has written with a Pulitzer Prize Finalist and New York Times best-selling authors, as well as providing writing and consulting services for a producer of a recently-launched Lifetime television reality series. Shelly is the co-founder of two writers’ conferences and an adjunct professor at Cornerstone University. She is also a sexual abuse survivor who speaks to medical and mental health professionals at conferences, seminars, and in the nation’s prisons. Shelly is also an “expert” consultant for Caring.com, the Internet’s most frequently consulted site on caregiving issues. Shelly can be reached at Shelly@PTSDPerspectives.org or www.ShellyBeachOnline.com.

By Wanda Sanchez

Wanda Sanchez is the executive producer of one of the nation’s top talk shows in a highly-ranked California market. She has worked with the world’s top political leaders, as well as Hollywood personalities, New York Times best-selling authors, and top-ranked cultural analysts. She has also worked as a television producer and is the founder and president of her own publicity firm, representing authors and speakers. A sexual abuse survivor who has experienced a journey of dramatic healing from post-traumatic stress disorder, Wanda speaks to medical and mental health professionals in conferences, seminars, as well as to women in the nation’s prisons. She can be reached at Wanda@PTSDPerspectives.org.