Resources
By: Kirsten Fowler
Three kids with Fragile X Syndrome, Ranger the dog, a graphic designer, and a handsome husband – that’s what Rachael calls “Our Life”.
Along with her children, Rachael also carriers Fragile X Syndrome (FXS), the most common known form of inherited mental impairment and autism in boys. Parents of children with special needs may hear rumors or come across literature that can lead you to feel your marriage is predestined to end in divorce just because the words “special needs” is thrown into the picture. The good news is, your marriage is not bound to end in divorce. You and your spouse still have control over your relationship.
So, how can a marriage possibly survive, or even thrive, despite the hardships and unique trials known to all parents of special needs children? I’ll let you in on a secret: resilience. Resilience is the ability to spring back into shape or the capacity to recover quickly from difficulties. Another synonym for resilience is “hardiness.” Hardiness is a factor that includes being committed to overcoming life’s challenging situations, still feeling a sense of control despite adverse situations, and viewing challenges as a way to grow individually and closer as a family system (Eschleman, Bowling & Alarcon, 2010). You might be wondering, how do families become resilient? Research suggests that families who redefine stressors in more positive ways are less likely to experience negative outcomes from stress like depression and anxiety.
Marriages that stay together know how to learn and grow from the trials that come. You may think certain families have super human strength to withstand it all. Although I sometimes wish every parent with a special needs child automatically received super powers, it is not that easy. It is more of an internal determination to view difficulties in a positive light, draw upon your resources, and persevere continually.
Are There Resources?
There are many resources that you may be unaware of or have not yet taken used. Some of these resources may include, but are not limited to: faith/religion, extended family, community support and services, research, therapy, and more. There is a book written for parents of children with Autism Spectrum Disorders called Autism Spectrum Disorders: What every parent needs to know. This book has a list of all resources, including financial resources (like insurance coverage and what services they cover). It also has a list of validated websites about autism and what the diagnosis means for the family and where to go from there. While reading the book, you may find you have many of these resources easily available at your fingertips!
Here are some other good websites on resources:
http://www.nationalautismcenter.org/resources
What Is Respite and How Will It Help Me?
There will come a time when you need a break from the stress and burdens that come from having a special needs child. Couples often find they give so much to their children in therapy, advocacy, testing, etc., that they do not have time or energy for their spouse. That is why there is something called respite.
Respite is a short period of rest or relief from something difficult or unpleasant. While relying of family as a resource can be beneficial it may be helpful to occasionally find someone outside of your immediate or extended family to provide respite care. Since multiple family members are often impacted using outside service be a sort of relief for the family. You can use trusted neighbors and friends, community support, or professional help. Each area goes about respite and other supports differently. You can talk with a local health care provider to get pointed in the right direction for your needs. You can also check out the website www.hsdspd.utah.gov/ to get an idea of what is out there. Although this is a Utah-based resource, there may be a similar websites where you live.
Rachael has taken advantage or resources available to her. She has been blessed to have many young adults and young women in her neighborhood help care for her children free of charge. She also has respite care through the government agency called DSPD, or Department of Services for Persons with Disabilities. This particular agency can help in many ways, including the following: helping the child eat at the table during dinner time, babysitting while parents take time for themselves, and even taking the child bowling. During the other times of day-to-day stresses, you will also need personal resilience.
What if I Feel Really Sad?
Getting down once in a while is normal, however, it can become more than just a rare occurrence. Sadness can lead to despair and depression. Unfortunately, many parents of special needs children find themselves with chronic depression. During these times, seek advice from your doctor or a mental health professional. It is common to be fearful that someone may place a label on you for taking medication or seeking mental health services, but it is much more common than most people realize.
Another resource can be faith in a higher power. Research shows that religious beliefs and practices are associated with better mental health in family caregivers of patients with dementia (Hebert, Dang & Schulz, 2007). However, there is also research on how religious beliefs can be strongly associated with depression for those individuals experiencing higher levels of stress (Smith, McCollough, & Poll, 2003). It all depends on perspective: religious beliefs can help you persevere through hard times, or religious beliefs can add one more stress or element of guilt, which can negatively affect your mental health.
What About the Financial Burden?
You may have heard that finances can be a burden on a marriage, particularly when trying to meet the needs of a disabled child. And yes, research does show that arguments over finances are particularly potent at harming a marriage. In Rachael’s case, medical bills continue to increase with multiple daily prescriptions, regular doctor visits, etc. Depending on the needs of your child, the financial strain may ebb and flow, but there is no question that there will be costs. Here are a few suggestions to help in this matter:
Budget. No matter your household income, make it a point to budget. As a couple, differentiate the needs and wants of your spending habits. This will help to rule out any unneeded expenses and put them into more productive options.
Connect. There are several resources available for financial assistance, even if you do not qualify for Medicaid (Medicaid is the best, but there are other resources). CHIP is a program that helps individuals with children who have special needs who make too much money for Medicaid, but too little to afford private health insurance. Autism Speaks also offers grants for parents who want to send their child to special camps. The book, Autism Spectrum Disorders: What every parent needs to know, is a great resource for helping parents understand what is out there for them!
Be prepared. Try to build a savings account for the inevitable rainy days of medical trouble, accidents, and other unexpected happenings. Saving even a little bit of your income each month can add up over time, giving you an advantage when things become extra tight.
Should I Try Marriage Counseling?
For many people, the word “counseling” or “therapy” can trigger feelings of discomfort. People may feel embarrassed that their marriage is in need of outside help to improve. This should not be the case, however as many couples seek help through counseling. In fact, one of the best things Rachael and her husband Marc have done to help their marriage is go to counseling. Counseling has helped them sort through differences, become more understanding, and find solutions despite challenges. One piece of advice they have found most helpful is to make time for themselves as well as make time for each other.
Maybe marriage counseling seems too scary and overwhelming to you or your spouse. That’s okay. There is also the option of taking a marriage strengthening class in your community. Such strengthening classes can have many positive results. They can help bring you closer to your spouse, help you find renewed confidence in your marriage, and may help you and your spouse gain a greater knowledge of the elements of a strong marriage to apply to your own life.
Should I Join a Support Group?
Being part of a support group may not only help you with parenting, but it may provide emotional relief. Other parents of special needs children may have a unique perspective and offer support in new ways. Support groups can boost your spirits, help you connect with others, and help you feel stronger as a parenting unit. A common benefit from joining a support group is the realization that you are not alone. Others are going through similar struggles and want support as much as you do.
A great example of the benefits of support groups can be seen in Rachael’s life. Both her and her husband are wonderful advocates for Fragile X Syndrome. For years Rachael served in a significant role of the Fragile X Association of Utah. She also went to Washington D.C. several times to advocate for FXS. While Rachael may have taken on responsibilities after joining a support group, but don’t feel you need to. Rachael is a great example of the influence connecting with others can have in your life.
The Take Home
Marriage is no walk in the park and adding a special needs child to the mix can sometimes feel like a walk in the dark. However, it is important to remember that you can draw upon your resources, change perspective to see things more positively, and continue to persevere through thick and thin with your spouse.
Check back for Part 2 of this series from “Strong Couples, Special Children.”
Research support for this blog can be found here.