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Supporting the Unicorn Mom - How To Help a Mom With a Special Needs Child

October 9, 2023
Jeanne Chang MS, RN, CNOR
Image Credit: RODNAE Productions

During pregnancy, many moms develop a vision of parenthood and their child’s future. They envision things like taking their child to their favorite beach resort, or picking them up from daycare; what they don’t usually think about are things like long-term hospital stays, countless meetings and appointments with pediatric specialists or extended feelings of depression unrelated to postpartum –but this is a reality for some moms, especially those with a special needs child.

For as long as I can remember, I had no real desire to be a mother and never thought that I would be one; even when I found out I was pregnant, I couldn't envision planning birthday parties and playdates that my friends had for their children. However, I did have one vision of parenthood, and it was that of a healthy and happy child. That vision was shattered during my 30th week of pregnancy. I had an obstetric emergency that landed me a hospital stay and a steroid injection to prep my baby’s lungs for a premature birth. I recalled what I thought was useless information from nursing school: the complications for a premature birth, including short-term breathing issues and long-term vision and learning disorders. This was one of the few times in my pregnancy where I sobbed, hard, as I felt responsible for endangering the health of my unborn child. I was very fortunate and ended up delivering a clinically healthy baby at 36 weeks –and she didn’t even need to stay in the NICU. Yet, whenever my child experiences any health concerns or developmental delays, a part of my brain rewinds back to that hospital stay and the mom guilt kicks in. For me, this is just a glimpse into the thoughts of many moms who have a special needs child. As a mom, the worries and guilt are already limitless; so how does one navigate motherhood with a child that needs extra attention? How does a mother balance her time between her children who have varying medical needs? How does a mother tell her employer that she consistently needs days off to take her child to medical appointments? I wouldn’t be able to answer these questions, but I surely want to help.

Over the years, I’ve met several mothers with special needs children –some who were open to  sharing their experiences and everyday struggles and some who refused to acknowledge their child’s needs. I always wondered how I could help, but never knew how to lend a hand, especially in situations when it was taboo to speak of the child’s disability. I think many other moms may have felt the same way as I did; in the latest episode of our podcast, Margaret, our host and a fellow mom, asked Christine, a clinical dietician who has worked with cystic fibrosis patients, what moms can do to support families with a special needs child, which inspired my trip down the rabbit hole of researching resources available to these families. To be honest, my search quickly became overwhelming and at times discouraging, because the resources I found were extremely generic and widely spread out, requiring a lot of time to browse through each website. This further reinforced my belief that there is a lack of centralized resources out there to support moms of children with special needs, so through my research and reflecting on my own motherhood experience, I created a list of things that I personally believe we can do to bring a little extra joy to a mom with a special needs child.

Actively Listen and Ask Thoughtful Questions

As moms, we know that there are plenty of us out there who never feel heard, and having a friend who actively listens is like winning a prize. It’s no different when it comes to a mom of a special needs child. When a mother of a special needs child wants to share, lend an ear. Although you may not fully understand or empathize, listening helps validate a mom’s feelings, both positive and negative. Also, listening may give you insights as to where she needs help the most. Follow up by asking questions; this indicates that you’re acknowledging what she’s going through, and helps you become even more familiar with the complexities of her life as a mother.

Offer Direct Help

Many people ask the open-ended question, “How can I help?” While stemming from good intentions, this question can add pressure for the mom to provide acceptable answers when motherhood is already overwhelming. Instead, observe and find ways to offer direct help. If you’re noticing that she's struggling to cook dinner for her family on top of caring for her special needs child, offer to bring meals or provide gift cards to delivery services (Seamless, Uber Eats, DoorDash). If she’s having trouble getting to appointments, offer to drive her or give her a gift card to a car service (Lyft, Uber). If she’s struggling with her relationship due to the pressures of childcare, offer to babysit so that she can connect with her partner.

Show Her a Good Time

Mothers of special needs children may be wary of accepting invitations to gatherings because taking children anywhere outside the house is already a struggle without the added uncertainties and challenges of the required planning. To ease the pressures, you can invite her over with the family and provide simplified activities that will include all of her children, consider dinner out at a restaurant with a private room if the child has sensory issues, and share all the details of the event in advance and ask if any additional accommodations need to be made. These small gestures will go a long way to show that you value time with her and her family, and help her feel much more comfortable with enjoying herself. 

Gift Thoughtfully

Who doesn’t love to shower their friends and families with gifts? For the children, bring gifts with their needs in mind. Kozie has clothing specifically designed for several types of special needs, categorized under “sensory,” “temperature-controlled,” “compression,” “weighted,” and “medical.” Many larger retailers such as Target are also providing adaptive clothing and shoes, specially designed to make dressing easier for children with special needs. If you would like to bring a toy, you can try Fat Brain Toys which have toys categorized by specific special needs such as Aspergers, Cerebral Palsy, Down Syndrome, Muscular Dystrophy and Quadriplegia. 

Also, don’t forget the mom! As with any mom, she’ll often forget to take care of herself because she’s focused on her child–so bring her something that would allow her to take time for herself. Consider bringing a gift set with shower steamers and face masks, or a delicious treat from her favorite bakery that she doesn’t have the time to visit. Gifts for outside the home, such as movie tickets and spa certificates, are nice, but keep in mind that the mom may not have the time to carve out for these activities. You can check out more gift ideas here from a personal blog called “Raising the Extraordinary,” written by a special needs mom!

Help Out With the Research 

If you're noticing that she's feeling overwhelmed and lacking support, ask if you could assist by looking up local support groups and resources available for her and her child’s specific needs. As I said earlier, the research can be overwhelming –so this may take a load off her shoulders. Care.com has done a wonderful job of compiling some of these resources, but the following are some highlights:

  • Family and Medical Leave Act This federal program protects eligible moms to take unpaid but job-protected leave to care for her child.
  • Parent to Parent This organization connects families who have similar needs, allowing them to share information, receive support, and create new friendships. Parent to Parent USA has local groups in almost all states!
  • Caregiver Action Network This organization is designed to provide a community for caregivers. The website has a Caregiver Tool Box which provides tips and resources specific to a caregiver’s needs and broken down into several categories including ‘Staying Strong While Caregiving’, ‘Caring by Condition’ and ‘Juggling a Job and Caregiving?’.
  • Best Buddies This nonprofit organization provides four major programs to help individuals with disabilities develop skills to cultivate meaningful friendships, lead successful careers, become advocates for disability rights and live independently. The programs include One to One Friendships, Integrated Employment, Leadership Development and Inclusive Living.
  • Center for Parent Information & Resources (CPIR) This organization helps to centralize information and resources for parents with special needs children. It has an amazing and substantial resource library that includes parent guides, Individualized Education Program (IEP) planning and webinars on topics such as early learning and assessments. They also have self learning modules on priority topics for parents.

In line with the language I use with my five-year-old, I call these mothers unicorn moms. A unicorn in my house is appropriately defined as a very special horse that sparkles differently than an average horse and is multicolored to show its diversity; but at the end of the day, we still store it in the same bin as the other horses. My fellow moms with special needs children experience motherhood differently, but at the end of the day, they are moms with the same concerns, thinking about whether their child is eating and sleeping enough, and if they are happy. All moms need to be supported through the daily struggles of parenting –it just so happens that my unicorn moms may need support in a more creative way. Though my list may not be comprehensive, I hope that through these small gestures, we can show her that she and her family are just as much loved, welcome, and appreciated as the rest of us in the vibrant mom community.

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