Seek help from a professional

There is no doubt that parenting is one of the most rewarding yet also one of the most challenging undertakings in which a person can engage. When a parent has a child with a physical disability, the tasks involved in parenting now seem all the more challenging.

For parents, having a child with a disability may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care and affect decisions about work, education/ training and having additional children. While eventually, parents accept that their child has a disability, how long this takes may vary from person to person, even within the same couple. In some situations, parents may experience emotional struggles as they come to terms with the diagnosis. Feelings of guilt, hopelessness and anxiety stemming from a new overwhelming level of responsibility can become intense. Seeking help from a mental health professional who can help them during this process is recommended.

Change Focus

A change of focus with an emphasis on what your child can do, their unique talents and strengths, rather than their disability, is encouraged. Every child, regardless of their disability, has strengths, be it their art ability, their happy disposition or their humor. By focusing on your child’s strengths, you are in a better position to help them achieve their potential in life. Promote your child’s strengths and help them achieve as much independence as possible. Having a good working relationship with your child’s therapists and teachers will help you to know when you should be giving a “gentle push” to encourage greater independence and when your child may not be ready to tackle a task.

Access Educational Services and Opportunities

It is essential as a parent that you work closely with the school system and ensure that your child is receiving the best educational plan. Some children with physical disabilities need an Individualized Education Program (IEP). The IEP is a plan developed to ensure that a child with an identified disability receives specialized instruction and related services. The IEP typically includes measurable goals and outcomes and plans for the child’s future as they get older and closer to exiting the school system. While a child can remain in the school system until age 21, there are often community resources such as vocational training and life skills training that could be of value.

Also, it’s important to find your community. The families of children with disabilities often experience challenges or barriers related to accessibility – the ability to independently access a device, service or environment. The ability to connect with other parents who are in similar situations is vital. Whether this is through joining a national organization such as United Cerebral Palsy or Muscular Dystrophy Association, or a local organization, the benefit of additional support, knowledge, experience and sheer numbers enables families to reach their goals.

What Can I Do?

If you are raising a child with a physical disability, one of the most critical points is to remember; you are not alone! The following is a summary of tips and tricks that can be helpful in your parenting journey: 1. Know the condition. Learning everything you can about your child’s condition means you can identify potential medical complications, assist with their development and advocate for them at every stage of life.

2. Foster independence. Work closely with your child’s therapist and determine when you need to give a gentle “push” and ask more of your child and when you need to pull back. Celebrate the small victories.

3. Encourage education. Work with the school system and utilize all resources available to your child, including those to help them transition from school to the workforce.

4. Play can be therapeutic. Like all children, children with disabilities learn through play. They will let you know through their smiles and laughter what they enjoy. Playtime can be rewarding for parents, seeing their children full of joy. Play is stimulating and promotes cognitive, emotional and neurological growth. Always make time for play.

5. Join a support group. It can be very isolating to have a child with a physical disability. Connecting with parents who are in similar situations can feel supportive and validating. In addition, other parents may have suggestions for how to handle situations such as negotiating the IEP process, finding medical specialists or meeting their child’s social and emotional needs. Remember, there is strength in numbers, so do your best to find your supportive tribe.

Michael D. McGill, MCD, CCC-SLP, is a clinical assistant professor and director of the School of Allied Health – Children’s Center, LSU Health Shreveport. Michelle Yetman, Ph.D., clinical psychologist and associate professor at the Clinical Children’s Center at the School of Allied Health Professions, LSU Health Shreveport.