What Every Special Needs Mom Wants 'Neurotypical' Moms to Know
Becoming a parent is full of surprises and you never know what journey awaits you. And for some moms and dads, that means taking up a unique title: Special needs parent.
Raising a kid with special needs can be a much different experience. You wouldn’t trade your kid for the world, but it’s tough when society compares you and your family to ‘normal’ families. The reality is, you have a much different version of ‘normal,’ and you need others to understand that.
Brynn Burger makes this point in a recent post on her blog The Mama On The Rocks. When her son was 4 years old, he was diagnosed with a severe form of combined type ADHD, and she earned her label as a special needs mom. “No longer was I just your average parent who did drop-offs and pick-ups, PTO meetings and little league,” Burger says. “Now, I was given a label that was tied to a diagnosis that would later become two and three and now five diagnoses for our 7-year-old ball of untamed wild energy.”
And with her label, she couldn’t help but find one to categorize other moms with ‘normal’ children, or which she now refers to as ‘neurotypical moms.’ To clear the air, she listed five things about special needs moms she wishes neurotypical moms knew, “even if we are too afraid to ever say it out loud.”
1. Our victories don’t look like yours
Special needs parents rejoice in the small things. “We don’t usually make it through getting ready to leave the house, enjoying a meal or even bedtime without a major disruption,” she says. “That means when we actually do, it is a milestone and we will all but throw confetti and have a trophy engraved.”
2. Sometimes we resent you—and you’re not to blame (but neither are we)
You know how the saying goes—the grass is always greener on the other side. And this takes shape bigtime when other moms vent about how difficult their, as Burger says, “‘normal’-looking” child is. Most special needs moms will resent their friends at one point in time, but it doesn’t take away from another mom’s personal experience.
3. We are afraid to ask for help
Help? Who needs help? Every mom could use a hand, but rarely do women actually voice their woes. And special needs moms find themselves in even more of a pickle, because they can’t trust their youngster with just anyone. “There is usually a very short list of people we trust to keep our kids, and we are painfully aware of what we are asking someone when we seek childcare coverage,” Burger explains. The bottom line is they almost never catch a break.
4. We are always worried
All parents are in a constant state of worry, but the things special needs parents worry about are very different compared to other parents. Burger can’t go a minute without obsessing over whether or not she made the right call regarding her son’s therapy, medicine, interventions and future, just to name a few. “Sometimes the weight of all of these worries is to far too much both physically and mentally.”
5. Some days we really do hate it
Special needs parents, like all parents, fiercely love their children. But every now and then you can’t help but throw yourself a pity party. “Most of us don’t recognize ourselves anymore,” she admits. “We don’t have many people we talk to honestly about our real struggles so it leaves us feeling isolated and lonely.”
And that’s just the tip of the iceberg. There’s a lot going on behind the scenes for a family with a special needs kid. When parents are so wrapped up in constantly being their child’s advocate, their relationship with each other tends to take a backseat. “The strain in our marriage is mind-numbingly stressful,” Berger says.
“One of you is always on duty around the clock and there are no sick days,” she writes. “You rarely get date nights or even evening conversation because they had night terrors or still wet the bed or need medicine at an odd hour. You never take family vacations because even if you could afford it, you have to plan around accommodations, medication times, prescription refill dates, weather, sensory exposure…”
Communicating with each other and taking advantage of relationship apps like Lasting helps partners revisit their connection, but sometimes couples aren’t even aware of the wedge in their marriage because their mind is elsewhere. That’s where friends come in.
“We need you to fight for our friendship. We need you to show up with a hot meal. We need you to come sit with our kiddos long enough for us to wash our hair. We need you to arrange with our [partners] to sneak us away to grab coffee or drink wine and talk,” she pleads. “We need you to listen even if you don’t totally understand. Don’t give up on us, friend.”