Being a special needs caregiver is one of the most selfless roles. As a parent, carrying out this role can be both a satisfying and overwhelming responsibility. While there is no “right” way to perform this important job, when it comes to caring for a child with special needs, there are several unique challenges you may face as a caregiver. If you are caring for a special needs child, I would like to share some tips to help you feel more confident performing this vital role.
Special Needs Caregivers Need to do Research
While each person is different, a special needs caregiver must understand the disability that your child has. Learn about the other behaviors and characteristics of the disability and the limitations of the child you are caring for. Understanding how the disability presents itself and how it may impact daily activities, such as moving around in the environment, going to school, or participating in social interactions, can help you adequately meet your child’s needs. Support platforms such as Vitalxchange can help you learn more through parent mentors and experts.
Special Needs Caregivers Need to Learn to Advocate
In addition to being a special needs caregiver, you are also an advocate for your child’s needs. You likely understand your child’s struggles better than anyone else. Taking an active role in advocating for your child’s best interests is both important and rewarding. I encourage you to take time to learn as much as possible about your child’s disability and then learn about your legal rights as a family member. There are people on platforms like Vitalxchange who can help you learn to advocate for your child. Once you have this knowledge base, you can lend your voice and offer solutions to your child’s school, elected officials, and legislators to try and inspire change.
Special Needs Caregiver Support Group
As rewarding as being a parent is, it can also, at times, be emotionally taxing and overwhelming. Taking care of yourself is just as important as taking care of your child. Consider joining a caregiver support group online, in person, or even create one yourself! Sharing and hearing stories about everyday experiences can help you feel less isolated and may help relieve some of your stress.
Catch Some Downtime
Special needs caregivers may need some downtime rather than “doing something.” Parents can read, listen to music, meditate, etc., while their child is engaged in another independent activity. Even having a “quiet corner” that you can use to regroup with candles, aromatherapy, etc., could give you the relaxation you need. If both parents are present, one parent can watch your child while the other takes a mini-break, even if it’s just for five minutes.
Take A Little Time Away
Parents of children with special needs may need to get away. It would help if you felt comfortable with the person who will be with your child so that it may be a gradual process. You may want to stay in town the first time and then increase the time away. Even a few hours a month is beneficial.
Special Needs Caregiver Respite Services
Children with developmental disabilities or other conditions receive respite services in some states. The source of respite will differ from state to state. The Title V (Maternal/Child Health) Program can often give families leads on how to find care. Family Voices/Family-to-Family Health Information Centers and programs like Vitalxchange can also give parents helpful resources. There is also a national respite locator for families.
Final Thoughts for a Special Needs Caregiver
There are many ways caregivers can feel more confident and de-stress, for either a short period or for hours. Parents of children with special needs can research, advocate, talk to other families, care for their physical/mental health, or get away and come back refreshed. By taking care of yourselves in all these areas, you can truly become “resilient caregivers.”