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Caregiver support

Self-care and maintaining adequate support are essential to well-being, especially for caregivers. To be at your best so you can provide the best care, learn to recognize common stressors, practice self-care, maintain supportive relationships and know when to seek professional assistance.

Recognizing common sources of stress

Stress is an ever-present reality for military families, especially those affected by Autism Spectrum Disorder (ASD). It affects the entire family. And stressors vary from everyday struggles (e.g., financial burden of care and treatment, handling routine chores and tasks, maintaining relationships with family members and friends, etc.) to the challenges associated with military life (e.g., deployment, relocation, etc.). Awareness of these stressors can make these issues easier to bear.


Finances

Caring for a child with ASD can be a major financial burden. The cost of deductibles, copays, home safety, repairs, etc. can add up to thousands of extra dollars each year. Setting aside as much money as possible now can help cover the cost of future care.

Here are some ideas to help lessen the financial burden of care:

  • Ask others who have experience caring for individuals with ASD (families, doctors, or support communities) for tips and best practices to help limit the costs of care.
  • Learn about the ASD benefits and programs you are you are eligible for to help cover the cost of services and equipment.

 

Routine chores and tasks

Daily chores and tasks can also be a major source of stress. Now that you are a caregiver, you may need to plan out activities in advance and think through things that you may not have had to consider in the past. For individual caregivers or those temporarily serving as primary caregivers (like during a deployment or military training event), family and friends often live far away and are not able to assist with care. You may be responsible for everything from haircuts, shopping for groceries, and helping with the tasks of daily living, sometimes while also maintaining full-time employment. In these situations, caregiving can feel overwhelming at times.

Discover tips for dealing with day-to-day tasks

 

Relationships

Caring for a loved one with ASD can be a great source of stress on relationships including couples, siblings, grandparents and other extended family members, friends, etc. Friends and family members sometimes have to restructure their lives, inherit a broad range of burdens, and make sacrifices or special accommodations. These experiences can strain the relationship and cause much stress.

  • Remember that regardless of each person’s contribution, caregiving is difficult. Try your best to see it as a group or team effort and celebrate each other’s contribution and hard work. Feeling appreciated and showing appreciation supports a positive environment.
  • Schedule one-on-one time together. If getting out of the house is not an option, be creative. Consider how you might use the resources and space available. If childcare is a barrier, visit the TRICARE ASD Benefit page to learn about Respite care and other resources you might be eligible to receive.
  • Encourage open and honest communication so everyone feels heard and that their concerns matter.
  • Protect personal belonging from being damaged or destroyed (locked closet, chest, or safe).
  • Accept that frustrations and arguments are a part of every relationship.

 

For additional information and helpful tips, review the resources below:

 

Future planning

A major stressor for parents and caregivers with children with ASD is the future care and well-being of the child. Families may be concerned about what to do when the child turns 18 years old, availability and eligibility of care and treatment, and who will care and provide for the child after they are no longer able. Learn more


Home and public safety

Parents and caregivers likely agree that safety issues are a significant concern when caring for a child with ASD. Depending on the severity of the child’s condition, they may lack certain skills that would help to determine if a situation is safe. It is important for parents to discuss how to recognize and avoid potentially dangerous situations along with what to do if the situation is unavoidable. Whether at home or in public, securing a loved one’s safety requires time and planning. Being proactive about home and public safety is critical. The following tips can help protect your child regardless of the environment.

General safety tips

  • Teach the child basic personal information (e.g., parents’ or caregivers’ names and phone numbers). This way the child will know how to get in touch with you if lost or in case of an emergency. It may help to begin with small steps, such as first name only, and then add more as the child learns. Visual prompts or cues can also help. It is important to caution children from sharing this information with strangers. They may be excited to share what they learned with anyone who will listen.
  • Create a personal information card for the child to carry. This may be particularly helpful for children who are non-verbal. Some information to include on the card might be: their name, address, hometown, telephone number, and parents’ or caregivers’ names. If this option is not appropriate for the child, similar options include safety temporary tattoos or stickers that a child can wear out in public.
  • Teach children how to identify men and women in uniform and who wear identification badges (including police officers, fire fighters, and store clerks) so they know who to seek out if they are lost or need assistance.
  • Discuss your child’s condition and needs with teachers, daycare providers, extended family, neighbors, police officers, and other individuals in the community. Alert them to any potential risks to your child including wandering, fear of pets, attraction to dangerous things (cars, trains, etc.) or other unsafe activity. Also provide at least two emergency contacts in case you cannot be reached.
  • Create an informational handout to distribute to those who come in contact with your child. Be sure it contains helpful information such as a photo ID, your name, address and phone number as well as any life-saving details. This may also include contact information for emergency services.

 

As for your home, here are a few tips to help ensure the area is secure:

  • Place gates in stairwells and doorways
  • Lock windows
  • Use childproof locks on cabinets
  • Install deadbolt locks or home security systems
  • Unplug appliances or store them out of reach
  • Fence yard

Learn more about home safety and developing a safety plan

 

Public safety concerns

Children with ASD and other special needs may be more likely to find themselves in dangerous public situations than their peers. Public safety risks can be even higher for military families. Frequent relocations make it difficult for individuals with ASD to learn their surrounding or to distinguish strangers from friends. Learn more about public safety risks to help protect your loved ones from harm. The BigRedSafetyBox from the National Autism Association provides public safety information about common concerns including wandering and water safety.

Tips for caregivers

Caregivers are sometimes guilty of spending so much of their time and energy caring for others that they neglect their own needs. Although it may seem like you are doing the right thing by placing other’s needs before your own, it is important to remember that if you do not take care of yourself, it becomes harder to care for those you love.

Practicing routine self-care

Self-care is a common struggle for many caregivers. When trying to balance work, family, and life, taking time for you may bring up feelings of guilt. However, practicing routine self-care is one of the best ways to ensure that you are providing the best care to those you love. If self-care is an area you feel you struggle with, here are some strategies that can help:

  • Allow yourself to fully experience emotions (both good and bad), understanding that emotions are temporary and fleeting
  • Develop a healthy sleep routine
  • Exercise
  • Manage expectations and focus on what is realistic and achievable
  • Practice mindfulness exercises such as yoga, deep breathing, and meditation
  • Play
  • Set aside time for yourself to do things you enjoy
  • Use visualization and positive affirmations to help maintain a positive attitude
  • Write in a journal to allow those feelings/emotions to come out in a purposeful way

Maintaining adequate support

Establishing relationships and being close with others is a basic human need. For caregivers, strong relationships are essential to well-being. Your support system can provide emotional support, offer advice, and help you to overcome the challenges and struggles of caring for a loved one with ASD. While military service can make it difficult to maintain relationships, here are tips to help keep networks strong and also build new connections:

  • Online support help and message boards on a variety of websites that deal specifically with caregivers of individuals with ASD are great sources of information to help you cope.
  • Support groups are available in most communities for specific conditions, including ASD.
  • Tendency to withdraw or disconnect from others.
  • Friends and family members who may live far away may not be able to help you with day to day tasks. However, they can provide emotional support.
  • Church organizations often have assistance for caregivers. Pastors, priests, or chaplains can also help by offering a shoulder to lighten your burden.

NOTE: Caregivers need support. Trying to do it alone can be damaging to you and those around you. Strong attachments give us a secure base, and the more connected you feel, the more separate, autonomous, and resilient you can be.

Knowing when to seek professional support

At certain times, people, and especially caregivers, can benefit from assistance and support. Some signs that professional support may be necessary include:

  • The inability to focus
  • A persistent agitation or anxiety
  • The tendency to withdraw or disconnect from others
  • Feeling depressed
  • Changes in appetite and/or weight
  • Thoughts (or fantasies) of harming oneself or others

If you or someone you know is experiencing these or other social or emotional problems that interfere with the ability to function as usual, it is important to seek help right away. Military families and service members have several options available.