I was speaking with a mom about her daughter, who has a disability. This mom was lamenting her frustration with once again “not being heard.” She felt that people (family, friends, doctors, teachers, etc.) don’t truly understand what she deals with. And, this mom is right! Parents of children with disabilities often face a range of emotional, practical, and social challenges… just to name a few. There is an old saying that goes something like this… “you can’t really understand another person’s experience until you’ve walked a mile in their shoes.” So today, I thought we would “walk a mile.”
Emotional Challenges:
Parents, in general deal with a lot of stress and anxiety. But, add a child with a disability, parents also worry about their child’s well-being, their future, and their ability to integrate into society. Some parents may go through a grieving process as they adjust their expectations and dreams for their child. Guilt and self-blame lead to parents questioning whether they could have done more, something different, or something less. And, finally emotional fatigue. The ongoing nature of caregiving can lead to burnout or emotional exhaustion.
Social and Community Barriers:
Stigmas and social isolation lead families to experience judgment or feel excluded from typical social activities, peer groups, and sometimes even family events. Many parents seek out support, but often, groups or communities to connect with others going through similar experiences are hard to find.
Educational and Healthcare Advocacy:
Dealing with and navigating healthcare systems, education systems, and bureaucracies can be overwhelming. Parents must learn and understand a lot: therapies, Individualized Education Plans (IEPs), medical treatments, legal jargon, educational buzz words, and more. Fighting for resources, parents often have to advocate for special accommodations, therapies, and services for their children, which can be time-consuming and frustrating.
Financial Strain:
Medical costs can be outrageous. Disabilities may come with expensive medical bills, therapies, surgeries, and specialized equipment. Then, to top it off, some parents may need to reduce work hours or stop working altogether to provide full-time care. Financial planning for their child’s future is also a major concern, including long-term care and potential legal guardianship.
Impact on Family Dynamics:
Caring for children with disabilities can take a lot of time and attention from parents. This can put a lot of strain on relationships with spouses, siblings, other family members, and friends. Other children in the family may feel neglected or struggle to understand the attention and resources devoted to their sibling. The demands of caring for a child with special needs can sometimes lead to marital strain or conflict over care strategies.
Caregiver Burnout:
Parents can experience a lot of physical and emotional fatigue. Especially if they are caring for a child who they need to lift and transition all the time. A child who requires a lot of attention… tube-feedings, breathing treatments, medicines, therapies, etc. Caring for a child with disabilities can be physically and emotionally exhausting, especially if they require around-the-clock care. Many parents struggle to find time for themselves or may feel guilty for seeking respite care or help from family and friends.
Legal Considerations:
What happens to these children when they reach adult age. Parents are no longer in a position, for a variety of reasons, to care for them anymore. Or, God forbid, the parents go before the child… who is going to take care of them! As children age, parents may need to consider alternate placements, navigate complex legal issues, such as guardianship and ensuring their adult child’s rights are protected. These issues can weigh heavily on the hearts and minds of parents.
Despite these challenges, many parents also experience profound love, personal growth, and a strong sense of purpose through caring for their child. They often build strong communities with other families facing similar challenges and may develop a deeper empathy and understanding of the world around them. But the journey is never easy!
I understand that there are difficult parents we have to deal with. Believe me, I have had my share! My hope is that having walked this mile, as educators, no matter the position we hold, we lend to parents a little more understanding, a little more compassion. Five more minutes to listen, ten more minutes to hear. Maybe a hand to hold, a shoulder to cry on. In the end, if we take the time to walk a mile, we will be better ourselves!