Value of Friendship for Special Needs Moms

After hitting snooze two extra times, I’m now running 10-15 minutes late, a huge deficit in the morning, but maybe all the other forces in the universe, namely my daughter, will cooperate? No. My 20-year-old refuses the shirt and shorts we chose last night, pushing them away, throwing them on the ground, and yelling at me.  Kat challenges every step of getting dressed.  By the time she’s on the bus, excited for school, I’m exhausted and frustrated, but today I’m meeting my friend for coffee—something to really look forward to.  

It made sense for my friend and I to find each other, with our children at the same special needs school, and with their sisters also a similar age.  In fact, we saw each other often in those early years at sibling groups, where the “typical” siblings met in a support group, sharing their own experiences growing up with a special needs sister. Meanwhile, as we tried to keep our other daughters entertained, we chatted casually and shared ideas and recommendations, such as clothing for kids who suddenly stripped in awkward locations, a problem for many more years to come.  

We still share knowledge and offer help where we can.  We may have looked a bit crazy recently when we were standing in a diner’s parking lot comparing our daughters’ new wheelchairs like they were fancy new cars—“Her wheel rims are so cool!” My friend is super savvy at finding innovative devices. When I felt discouraged and scared for my daughter’s safety because she was routinely removing her seatbelt in the car, my friend came through for me, gifting me her great find, a creative but easy-to-use contraption to keep both of our daughters’ firmly in their seats.  Her generosity to me and others is an especially meaningful quality of hers.  

The humor we share when we explain the frustrations in our lives lifts my soul.  A few days before, I was yelling at my daughter, “Leave your seatbelt alone!” like a madwoman as I frantically searched for a place to pull over while on Rt. 202.  However, when I retold the story to my friend, we rolled with laughter because she has been there, and, in hindsight, we can picture how funny it is.

We share stories of places we laughingly say we have been “banned from”, such as the Italian restaurant where my child (a teenager) had a major, disruptive breakdown before we even made it past the lobby and kept backing her wheelchair into other waiting patrons.  My friend had traveled to NYC to see a family friend in a performance, and she had to leave early because her daughter wasn’t happy and made sure a good portion of the audience knew that.  At a play myself, my daughter had the loudest hiccups ever, the type that comes from way down in your gut, shakes your entire body and echoes around you, while my kids and I were trapped in the back of the theater; we haven’t been back there either. It feels so good to laugh with someone who totally gets it, letting go of any residual embarrassment or misplaced guilt, reminding me that it’s important to take our children out in the world.  

Our daughters’ typical sisters experienced the uncomfortable situations above as well, and, of course, they felt embarrassed, an emotion they struggled with.  My friend and I share our sadness and frustration at the disappointments of our typical children who had important occasions ruined or who may have felt they missed out on fun activities.  Her preteen daughter had a beautiful new dress for a dance that was ruined on their way out the door by her sister’s sudden projectile vomiting as she hugged her goodbye.   My daughter sometimes missed out playing at neighborhood gatherings because her sister, who uses a wheelchair, grew inconsolably upset when she could not physically run with the other kids as they zigged and zagged through everyone’s lawns. My friend and I have commiserated and then brainstormed how we could make both our daughters feel seen and important, helped each other accept that the sisters may have some resentment to deal with, and reminded each other that this family structure can also create compassionate and understanding advocates.  

Now we can celebrate together the sisters of our special needs kids, hers who has a graduate degree that prepared her to work on assistive devices for the disabled community, and mine who is pursuing a graduate degree in art therapy, to help those in need mentally and emotionally.  

Our special needs daughters are friends too, which in their situation attending a non-neighborhood school, have been difficult to find.  Kat is obsessed with my friend’s daughter’s chair; with her bossy nature, she thinks she is helping by taking off her friend’s seatbelt.  (Yes, there’s a theme here with seatbelts.) Even though with anyone else, Kat’s friend would be upset with the interference, she tolerates it with Kat because she is her friend. At prom, Kat went over to her friend and took her hands to dance with her.  At times we’ve seen them hug, and both of us tear up with joy and affection.  

As we encounter various life-changing transitional moments in our children’s lives, such as school graduations, which my daughter walked in last month, we share ideas of how to advocate for our children, a vital but difficult need. My friend lived through this milestone last year, and she can absolutely relate to my bittersweet feelings where I’m so proud of Kat, especially that she did walk onto the stage using her walker to receive her diploma, but also sad for the limitations on her future. My friend often experiences events before me because her daughter is almost a year older, so she gets the dubious honor of setting an example for me.  I’m so proud of and happy for her daughter’s current volunteer role at a retirement home, but I’m even prouder of my friend for figuring out and procuring such a perfect position showcasing her daughter’s skills and giving her socialization with senior citizens who delight in seeing her.   My friend’s success gives me hope and the impetus to help Kat find her own worthwhile future.  

I am so lucky to have met my dear friend, both because she can understand my life better than a mom without a special needs child, and especially because of her upbeat, positive attitude toward her life.  Even amid the chaos of her world, she remembers what is important, and how fortunate she is to have her family to love.  She inspires me to refocus on how precious all my children are and how lucky I am to have them.  We meet when we can for coffee, and those conversations often change my mood entirely, from overwhelmed and frustrated with my current situation, to upbeat and ready to fix the issues. In fact, I am definitely due for that serving of friendship and humor to revitalize me right now!