Two years ago, my youngest daughter was diagnosed with Rett Syndrome—a progressive genetic disorder characterized by the inability to speak, loss of purposeful hand use, seizures, feeding problems, and breathing issues. Many things in my life changed drastically after this, but I was perhaps most taken aback by one thing—how much my existing friendships were affected.
If you have a friend who is a special needs mother, odds are there are certain things she wishes you understood about her life. The following list of hidden truths is certainly not exhaustive or representative of every parent’s situation. But it might give you some insight into what your friend is experiencing and how you can help her through her struggles.
She might need to be careful about money. Experts estimate that it can cost up to quadruple the normal amount to raise a child with special needs. My own family has spent a good deal on co-pays, surgeries, and medications. But we have also spent what feels like a fortune on other things, like sensory vests, wheelchair ramps, vitamins and supplements, shoe inserts, etc.
She could be struggling in her marriage. Though experts have not come to a general consensus, some put the special needs marriage divorce rate at as high as 80-87 percent. While I have been fortunate enough to avoid this issue, I have seen it happen time and time again to my special needs parent friends.
Silence often hurts. It’s natural to worry that asking your friend about her child or her struggles might make her more stressed or depressed. But many parents like me feel the opposite. It hurts when no one asks about my daughter or when others brush past my most recent obstacles in favor of more “comfortable” topics.
Her friendships have probably changed. Don’t be offended if your friend wants to keep you and her special needs parent friends in separate parts of her life. There are things this group of friends gets in a way other friends don’t. But this doesn’t make these friendships any better; it just makes them different.
She’s likely worried about the future. While others might be anxious about their child eventually falling in with the wrong crowd, choosing an inappropriate college major, or moving too far away, we special needs parents have our own set of fears. I lie awake at night wondering how to pay for my daughter’s care, what will happen when she becomes too heavy to lift, and who will be there for her after my husband and I are gone.
Her priorities may have shifted. The things I used to think mattered—my weight, that new wrinkle on my forehead—just don’t seem as important anymore. For special needs parents, it’s often easier to let the little things go and harder to understand why others don’t do the same.
Being around typically developing children can hurt. It’s hard to predict when grief will rear its ugly head. But when it does, the last thing I want to do is watch children run, jump, talk, and do all the things my daughter will never do. If your friend can’t bear to be around these things either, don’t take it personally. It’s probably just a part of her grieving process.
It’s sometimes hard to listen to others talk about their parenting problems. It can be difficult to hear other parents talk about parenting problems that are of a completely different magnitude from my own. If my daughter is struggling with her feeding tube, for example, I’m not in the mood to hear about another child’s picky eating habits.
She probably thinks about heavy things a lot. Special needs parents are often faced with the serious side of life. Some of the things I think about regularly: my daughter’s life expectancy, why diseases like hers exist, the meaning behind her daily suffering, and who she could have been without Rett Syndrome. Like everyone, your friend might have times when she needs help battling this negative spiral of thoughts.
She could need a way to connect to others that doesn’t involve children. Sometimes the most painful conversations are the ones that are casual, unscripted, and focused on parenting. Instead, I prefer outings centered around something other than children or around the parts of me that are not a mother (like my book club or writing group).
In the end, connecting to a special needs mother is far from impossible as long as both of you remain flexible and compassionate. The most important thing? Showing your friend you value her friendship, her child, and her parenting experiences—no matter how different they might be from your own.