Did you know that there are over 240 million children who endure some form of disability in the world today? That’s what the data from UNICEF says, and it includes children with disabilities on the physical, mental, and social dimensions.
Raising a child with a disability often entails a significant emotional toll on parents. The rollercoaster of celebrating small victories and mourning perceived losses can be exhausting and overwhelming, leaving parents feeling drained and emotionally vulnerable.
Despite these challenges, many parents report experiencing profound moments of joy and connection with their children. Still, it makes sense to have all the help you can get, and in this article, we will explore four aspects to keep in mind when raising a child with a disability.
1. You Don’t Have to Deal With Things on Your Own
Often, you will find yourself overwhelmed and feel out of your league when trying to provide care. That’s perfectly normal. Taking care of healthy children is already a struggle. Children with disabilities can put a lot of stress on the family unit due to the extra care that’s needed.
The good news is that you don’t need to do this on your own. These days, you can hire home nurses who have experience caring for children. Just ensure that they have a DNP FNP or whatever the best recommended training level is in your state or country.
According to the University of Indianapolis, a DNP is a two-to-three-year program that is meant for advanced practice nurses. It may sound overkill to hire someone very experienced, but you want to give your child the best care you can get when you aren’t with them.
2. Acceptance and Realistic Expectations are Key
Acceptance and realistic expectations play a paramount role in the journey of parents caring for a child with a permanent disability. It’s natural to seek out every possible avenue for improvement and a cure for your child’s condition.
However, the pursuit of new cures and experimental treatments can sometimes lead to a cycle of disappointment and frustration. Unfortunately, this has the potential to severely impact the well-being of both the child and the parents.
Cures and treatments are not the only areas in which this is relevant. Parents can often have high expectations about the general performance of their children. They hope that their child will somehow surprise them and overcome every challenge. This is, once again, not realistic. It is more practical to identify your child’s strengths and focus on those instead.
At the same time, acceptance does not mean resignation or complacency. Rather, it involves finding a balance between embracing reality and maintaining hope for the future. Realistic expectations play a crucial role in this balance, helping parents navigate the myriad of treatment options and interventions available to them.
3. Avoid Over-sheltering and Over-protecting your Child
Doing so can be tempting for parents who are deeply invested in ensuring their child’s safety and well-being. However, while it may stem from a place of love and concern, this approach can have detrimental effects on the child’s development.
One of the primary dangers is the stifling of their autonomy and self-confidence. When you constantly shield them from potential risks or challenges, you inadvertently send the message that their child is incapable or inadequate.
You also run the risk of creating cracks in the family structure. For instance, siblings may feel resentful or overlooked due to the lack of attention they receive. Over time, this creates an environment that undermines the supportive and nurturing environment that is essential for the well-being of a child with a disability.
4. Remember to Take Care of Yourself
The saying “You can’t pour from an empty cup” holds very true in this context. Parents who neglect their own physical and emotional needs risk burning out, compromising their ability to provide the care and support their child requires.
Chronic stress, sleep deprivation, and neglecting one’s own health can have far-reaching consequences, impacting your ability to function effectively as a caretaker. Remember, taking care of yourself is not a selfish act—it’s an act of self-preservation that benefits both the parent and the child.
According to Alicia Muñoz, LPC, GoodTherapy, something that can help is to make a list of fun things you can do if you have time. This might include activities like watching movies at theaters, traveling, or having a nice dinner outside. You then need to find and take advantage of services that can give you some respite.
In other words, you are going to burn yourself out if you don’t make the conscious effort to create time for yourself.
Moreover, prioritizing self-care serves as a powerful source for modeling. Children learn by example, and observing their parents prioritize their own well-being sends a powerful message about the importance of self-care and self-respect.
In conclusion, feeling overwhelmed is a natural response to the challenges of raising a child with a disability. It’s okay to feel scared, anxious, or uncertain about what the future holds. However, it’s essential not to let these feelings overshadow the opportunities for growth, learning, and love that lie ahead.
Remember, it’s not all bad. Caring for a child with disabilities can often lead to deep and meaningful connections within the family unit and the broader community.
