If you haven’t caught on already, we are a special needs family. That means that someone in our family is affected by disability of some kind. Our second child, Anna, has Rett Syndrome–a neurological disorder caused by a gene mutation, which affects her speech, motor skills, pain response, mood, and even her digestion and breathing. Since becoming a special needs family, we’ve been thrown into the world of other families affected by disability, and we’ve since joined the larger Special Needs Family both in our local community and even across the world (thanks to Facebook). We’ve learned quite a few things about being a special needs family. Below are just a few of those lessons.
1. We’re not that special.
We are still just an average, ordinary family. It’s true that we didn’t ask for this, and I do think that those who do ask for it (like the foster and adoptive parents who specifically seek out children with special needs) are pretty special, but even they are just a regular family. Yes, our daily life looks a bit different. But there is still dinner to be made, sibling rivalry, chores to be done, and, thankfully, lots of love. We don’t necessarily want to be “inspiring” or “incredible”. Sometimes just getting through each day is enough. If our kids are happy and [relatively] healthy, we are happy. But we are human like anyone else. We still have times of yelling at the kids, burning dinner, being annoyed with one another, and having a messy house–just like all the other normal, average families.
2. We really don’t mean to be late, but…
Sometimes we’re late. More frequently in the early years, I think (though I can only speculate since we’re still in the early years and hold out hope it won’t continue much longer). Small kids of any kind can make you late. For instance, when you are putting your baby into the carseat and suddenly get a whiff of something… Or when your six year old just can’t decide what to wear. But when dealing with a child with special needs, those times can be more frequent, and take more time. If the child has a movement impairment, for instance, getting them in and out of the house for that last-minute diaper change can take an extra long time. Or if there is equipment to deal with, that can be time consuming as well. And sometimes just getting everyone fed, dressed and ready to go takes a surprising amount of time. Even when you get started ten minutes earlier the next time, somehow you still end up late. And then of course when you have a disability that affects mood, or communication, you can have last-minute melt-downs, crying episodes, or frustrating sessions of trying to figure out what’s bothering your child, and that can take an extraordinary amount of time. So if I’m late to your event… Sorry. I’m really not trying to be–we do our best to be on time–but sometimes life just happens and we have to deal with it.
And sometimes we don’t make it at all. Sometimes those complications and last-minute changes are enough to keep us home. Maybe our immune-compromised child started to cough. Or perhaps our child’s melt-down has no end in sight. Or maybe they had a medical procedure or appointment earlier that day and they are simply too tired. Perhaps your party was just at the wrong time–maybe skipping a nap really is detrimental and we can’t veer from the schedule. So we’re sorry. We really do want to come to your party. We’d love to be able to have fun with you. But sometimes the disability gets in the way. Sometimes we just have to say no. And we hope you understand when that happens.
3. We want awareness… But we might be tired of explaining.
And really, that might be why awareness is so important. Because when we don’t have to constantly explain why our child isn’t speaking, is crying inconsolably, or is taking so very long to go up those steps, we have more time to focus on the task at hand. I would like to say that the stares and curious glances don’t bother me, but I’d be lying. Sometimes I want to shout to everyone around me, “She has Rett Syndrome, okay?!?!” But those awkward moments when someone will ask her a question, she of course doesn’t answer, and then I have to go through my little speech explaining that she has a neurological condition which causes her to not be able to speak. Now, sharing and awareness is good. We handed out Purple Cards at Halloween (both at grandma’s door and while we went from house to house) and I post quite a bit on Facebook. But trying to explain in person why my daughter just tried to bite your child, or why she’s screeching at the top of her lungs in the library, or why, after she “hit” your child, I’m soothing instead of scolding–that can be exhausting. Because I’m just trying to go about my day and live our life. Because we’re just a normal family with errands to run and places to go, remember? And I’m trying to focus on my child. So while I want you to understand and give grace to my child, I also sometimes just want to blend in. I think I could write a whole separate blog post about this, but I’ll end it here. Just know that as much as we want others to be aware and to understand, we also want to just live life and move on with our day without making every moment an awareness campaign.
4.We are fierce.
Especially the moms. Mama Bear never goes into hibernation. We have to be strong. Even if we’re not naturally strong or outspoken, we quickly become fierce when our child needs an advocate. We go to IEP meetings, discuss treatment plans with doctors, confront bullies, and then still have to deal with everyday life (which can be a bit more complicated). Oh, you’re parked in the handicap spot without a permit? Yes, I will call the cops. I earn that permit every day and I’m not going to tolerate you violating our rights because you don’t want to walk ten extra feet. No, I will not settle for that IEP when it is ignoring my individual child’s needs. That’s not good enough and I will make it clear to you what needs to be done. And yeah, if your child is teasing or taking advantage of my disabled child, I’ll intervene–no question about it. So don’t mess with special needs parents. And I mean that in the nicest way.
5. We are a tight knit group
We don’t need a lot of time together to quickly become friends. We get it. We understand each other’s struggles. Things that typical families, compassionate and loving as they may be, just won’t ever understand. And so we stick together. We fight for each other. We hold each other up when we’re faltering. We celebrate together when we have victories. And we aren’t at all fazed by one another’s stories involving bodily fluids. We spent only five days with special needs families at camp this past summer, and we were instantly able to open up to one another. There’s no pretense. And there’s no time to be coy. We were honest and raw in our small groups. We were accepting of each other’s families. And we became friends very quickly. We may have different philosophies of care, might be in different denominations (or different religions altogether), and might not be experiencing the exact same difficulties (even with the same diagnoses), but we are connected. We love each other, and we’ll stand by one another. We’re a family.
6. You need us
Yes, special needs families need typical families for practical support. You make great babysitters and we love it when you fix us a meal or clean our house. But did you know that you need us? We teach your kids acceptance, compassion, and empathy. We teach you to appreciate your children’s abilities and maybe to slow down and enjoy them a little more. We give life some variety, and bring a new perspective to the table. We help create understanding, awareness, and generosity. Maybe you Run For us, or maybe you volunteer at a camp. Maybe you both spread awareness and raise funds by buying our gear. Or maybe you cheer us on when we reach a milestone. But you need us. Not just to have a cause or to make yourself feel good about helping others, but to deepen your level of understanding, to further your kindness, and to broaden your views on abilities and the value of life. You need us to build your character. And we do the same with each other. We learn from other families with disabilities. And we learn from our own disabled loved ones. Life is learning, growing, and changing over time. And families with disabilities help to facilitate those things.
So maybe you did know some of those things, but maybe you didn’t. I hope that you learned at least a little something, and have reason to ponder it a while. I hope that you will give us grace, be patient with us, and think of us often when we’re not around. I hope you develop a new sense of understanding of what it’s like to live with disability.