Caring for a child with a physical or mental disability is an unexpected journey for any parent.
When planning for children, we imagine who they will be in life, how they will grow and eventually become independent from us.
We envision our babies growing up to lead adult lives after years of baseball games, recitals, honor society banquets, proms and learning to become a functioning member of society. A child diagnosed with a disability can be a devastating experience, wrought with confusion and guilt. It is important to avoid rushing through the trauma of this turn of events.
Many parents need time to cycle through the stages of grief when facing this change in life-plan. For example, many may deny this is happening to their family, be angry that this is happening to them and experience depression. It is OK to grieve the loss of the image you had in mind about how your child’s life would be. It is understandable to be afraid of how this will turn out and question your own ability to handle the associated challenges. It is OK to mourn the loss of your expectations, but how do we move to the stage of acceptance?
First, in the midst of your disappointment, remember that you are not powerless. Though it feels like this situation happened to your family without warning or permission, you are not powerless in the situation. You can exercise your power while being OK with not being OK sometimes.
Second, get educated. There is nothing scarier than a team of professionals talking about your baby and you have no clue what they are referencing. Learn the terminology of the diagnosis and research possible alternative diagnoses and treatments. Don’t be afraid to ask questions; you are owed information about your child’s health and medical care and should not be afraid to demand it.
Third, seek out parent support groups. Sometimes, these are in-person gatherings right in your community, but often they are online. These support groups are great places to share stories and gather the information that comes from the lived experiences of other parents with children with special needs.
Finally, develop a list of resources that are particular for your family’s needs. Care.com has a good starter list of national organizations that provide support to parents of children with particular healthcare needs.
Whatever you do, remember to take care of yourself. Childcare, in general, tends to fall on the mother’s list of responsibilities, but this is especially true for children with exceptional needs. Mothers can feel particularly vulnerable to feeling alone and under-supported when coping with the challenges of exceptional children. The feeling of isolation, even when partnered, can feel like you are shouldering this experience alone.
This is why it is important to keep activities for you and your child on the table and to ask family and friends who are like family to help. In recent years, public places have become better equipped to make outings more enjoyable for special needs individuals.
Most major cities have “sensory days” at their movie theaters and children’s museums. There are team sport leagues that have provisions for children with different physical or mental abilities, and many cities have ongoing recreational facilities that focus on exceptional children and host regular events including those that provide respite to parents in desperate need of a break. Parents Night Out is all the rage at schools and other businesses that cater to children with a variety of special needs.
That brings us to the next important point factor, which is guilt. Do not feel guilty if you need a break as caregiver burnout is a real and common experience. Expand your care circle to include family, friends or fellow parents that are equipped to supervise and care for your child for a few hours or more.
This can be terrifying initially, so be patient with yourself. You might have struggled to view yourself as capable of caring for your child, so the thought of trusting another person might be daunting. When possible, get some time alone or adult-only time. Go to dinner or a movie, make a spa appointment, or simply sit home alone to reenergize and recharge.
Consider the impact your child’s needs may have on the plans for your own life and begin to plan for them. Some children require at least one parent to be available for a good part of the day, rendering that parent unable to work full-time. Some children might require continual care beyond the legal age of adulthood. Whatever the impact, with planning, it is still possible to have a healthy, enjoyable life with your child, just slightly different than what you may have originally imagined.