Written by: Beth Neu, LPCC

Raising a child with disabilities provides the opportunity to appreciate the unique joys and challenges that are inherent in the experience. The emotions of parents, family members and other caregivers are complex and can range from love, stress, grief, joy, resilience and includes the complexity of family dynamics. One of things I’ve noticed when working with parents of children with disabilities is that they often feel isolated and alone in their experiences. While they can share their excitement when a new skill is learned or goal met, it may not be the same as their peers’ experience with their more typically developing children. Relationships change when you have a child or children with disabilities because your day to day life can be very different from a family not juggling multiple therapy or doctor’s appointments, having help in the home, or navigating educational challenges. Finding support is critical and available. The Family Achievement Foundation provides opportunities for parents to come together and share their experiences through various learning opportunities.

The Impact on Family Relationships

If a parent of a child with a disability is married or has a partner, the need for open communication becomes paramount to the success of the relationship and care of the child. Approaches to caregiving may differ and the stress of caring for a disabled child can bring forward feelings from other stressful times in a parent’s life. It is important to learn about and understand your “triggers” as well as those of your partners. Using tools when communicating, like those provided by Dr. John Gottman, can ensure that when conversations happen, they are calm, respectful and successful. Besides the need for good communication, all couples need time together. There are many creative ways to set aside small amounts of time to reconnect and nurture the relationship while nurturing a child with a disability.

Sibling relationships can also be impacted by having a sibling with a disability. Again, emotions can be complex and siblings can also feel isolated from peers as their emotions may include pride, happiness, jealousy, guilt or resentment about their sibling with the disability. Acknowledging and normalizing these feelings can help siblings adjust to the challenges within the family. It’s also important to provide opportunities for siblings to have time with parents, which increases the likelihood that they will feel seen and heard, an important piece for their identity development.

Managing relationships with extended family such as grandparents, aunt, uncles, and close friends, requires providing education and setting expectations. Most family members and friends want to be helpful but often don’t know how; so, fostering inclusion is key. Misunderstandings are bound to happen and using the communication tools provided by Dr. Gottman can provide a helpful guide. This includes creating a culture where family members feel heard and understood.

The Need for Self-Care and Self-Compassion

Many parents I work with struggle to find time for self-care and often feel guilty when they take a break from caregiving responsibilities to have fun and relax. Without spending time away from caregiving, caregivers are at risk of burning out, becoming irritable, and losing the ability to find the pleasures in raising their child with a disability. There are many ways to build self-care into a schedule, especially if this includes combining time with other family members to nurture bonds and create new memories. Self-compassion includes being kind to oneself when moments of doubt, frustration or isolation creep in. Taking a moment at the end of every day and looking for the positive experiences help to build resilience. Remember to celebrate the small wins, finding joy in the journey and recognizing the strengths of your family and that finding support is possible and necessary.

Written by: Beth Neu, LPCC
Beth Neu, LPCC, is a therapist in private practice at Constellations Psychotherapy and Coaching . Beth specializes in treating trauma, supporting all parts of the adoption constellation, and supporting individuals and couples who are neurodivergent and have ADHD, autism or OCD. Contact information for Beth can be found on her website.

Written By: Kristy Kargel

After flying to Seattle for a medical study related to my daughter’s diagnosis, we decided that traveling was something we really wanted to do as a family. Before we knew it, we were booking our next big trips which included both road and plane travel. I would like to share with you some tips that I hope will help you in your journeys with your own families!

Tips for Traveling

Tip 1: First and foremost, lower your expectations of the outcome of the trip.

Tip 2: If you are traveling by plane make sure to reach out to the airline you are flying on to talk with one of their agents about your child’s needs.

• https://www.delta.com/us/en/accessible-travel-services/overview
• https://suncountry.com/help-center/special-services
• https://www.aa.com/i18n/customer-service/contact-american/special-assistance.jsp

Tip 3: When traveling by plane, you are allotted an extra carryon that will hold all of your medications, medical equipment and even water if it is medically required for your child on the flight and/or destination.

Tip 4: TSA allows you to bring both pre-drawn medications and bottles of medications on the plane. If the medications are less than 3 oz, the TSA does not need to open, check, and test them. However, if the medications are fluids and over 3 oz, then TSA will need to open the bottles (even if new and sealed) to test them.

Tip 5: Contact TSA Cares at least two weeks before you travel to arrange for a TSA Agent to assist you through security with ease. Not all airports offer the same level of service, but Minneapolis/St. Paul has a great team of TSA agents that will meet you at the entrance of security.

Tip 6: When you are within 30 days from your travel I recommend contacting where you are staying to request mailing excess supplies to them like: briefs, formula, pre-package tube feeding meals and supplies, and anything else that may lighten your packing.

Tip 7: If your child is too large for a car seat and you are flying but they need assistance with sitting, there is a great harness you can purchase and use with approval from the FAA.

Tip 8: When you arrive at your destination, do you need a modified van? There are options for so many domestic locations! We have rented modified vans in both Seattle, WA and Sarasota, FL. Many more cities are now also offering Lyft and Uber with wheelchair accessible options too.

• https://wheelersvanrentals.com/
• https://www.wheelchairvanrentalfl.com/locations

Tip 9: If traveling to a beach location, there are many beaches that offer the use of a Beach Wheelchair. Some beaches also have a Mobi Mat that allows a wheelchair to roll over the sand. I usually do a search via the internet to get more information about the beaches that I would like to travel to.

Tip 10: Does your child have a hidden or non-visible disability? There is a program for air travel that helps airline employees recognize when someone has a hidden or non-visible disability. You can stop by the Customer Service or Information desk at most airports and pick up a sunflower lanyard free of charge for your family member to wear. The Sunflower is globally recognized as a symbol for non-visible disabilities, also known as hidden disabilities or invisible disabilities.

Tip 11: Do you have a child that is just too big for an infant changing table? There are now some airports, including Minneapolis/St Paul, Chicago O’Hare, and Seattle, that have added a full size changing table to accessible restrooms. In a pinch, I have used one of the lactation pods at the airport. Mamava Pod has an app that you can download to unlock these pods that are located in many airports and public places. They typically have two benches and also a counter space that can be used as a changing table.

Tom Hoel founded Family Achievement Center — to help people like his son and parents like him.

Tom Hoel started as a concerned parent after his son, Anthony, was diagnosed with Duchenne Muscular Dystrophy. He learned more about the diagnoses and searched for care options.

Then, a doctor said that Anthony, after experiencing serious falls, should prepare for life in a wheelchair.

With that, Hoel went searching elsewhere for answers. Eventually, he found a second opinion, one that emphasized rehabilitation through physical therapy. For Hoel and his son, it wasn’t easy, but through surgery, walking braces and therapy, Anthony regained his ability to walk with assistance.

Now, Hoel takes that perspective with him to work each day, not just as a concerned parent but as a care provider. His frustrations with the process for his son’s medical treatment led to him creating the Family Achievement Center, a physical therapy clinic in Bloomington and Woodbury, Minn. Click here for full article.

Tom Hoel, Family Achievement Center founder and Hudson alum | Local News | hudsonstarobserver.com