The Secret Life of a Special Needs Mom

The Secret Life of a Special Needs Mom

As I sit down to share my thoughts with you I’m feeling a little nervous. I am not sure how other parents will take this, or what your impression of me will be. There may be other parents like me that want to say all of this too, but as the title says it’s a “secret” that most of us keep inside.

Let me just start by saying this… I love being a mom, my kids give me life and a strength I never knew I had. The love a mother has for her children is a feeling that can’t be put into words. There are days when I look around at them and can’t believe I’m responsible for so many little people, and I’m pretty proud. There are days when I am not so proud of how I handled my role though. And, there are definitely days when I’m pretty sure I won’t make it through until tomorrow without failing at everything I do. I’m not the only mom that has these feelings, right?

The fact that I’m in this “special needs mom” club doesn’t help the emotional roller coaster that is motherhood. There are so many mom clubs, or groups these days. Everybody wants to be surrounded by people that have some of the same thoughts and ideas when it comes to raising their kids. After all, it does in fact take a village. Most of us seek out and choose these so called clubs where we fit in. Here’s the thing, us special needs mom didn’t choose our exclusive club. I mean, I guess I kinda did when I made the choice to become part of the family. I didn’t see it as a choice though, “T” was part of the package when I fell in love with my husband. Plus, who really walks away from a child that is so innocent and deserving of a mother’s love? Not me, so no it wasn’t a choice. And if somebody told me it was up to me to join the club or leave them behind, well then I guess you could say I was all in. I knew it would be difficult and I was ok with that, I loved my new family and was ready for my happy ending. I wasn’t really ready for all of these feelings that would come in waves over the years. Some days it is really hard to keep it together, I’ll be honest.

There are so many things I try to keep inside and I know there are many parents that share my struggle. It doesn’t make sense to most people that there is a secret side to raising a child with special needs. We all do our best, we see more doctors in a year than most families see in a lifetime, we have too many sleepless nights to keep track of, we deal with more than our fair share of “omg that’s gross” moments. I can bet that we also laugh it off in front of friends and family. Laughter is the best medicine, right? Making light of a situation is sometimes the best way we tell ourselves it’s not that bad. Some days it really isn’t that bad. Some days you get a note from the teacher saying he just met a goal from his IEP that we’ve been working on for 3 years and you cry. You cry because you never thought he’d get it, because there is hope for small victories, because small victories don’t exist to him- they’re all huge wins. You cry because, now what? What do we focus on now for the next few months or years.

There are countless days when you just want people to stop staring at him while we have dinner, while he cries, while he whips his head and flaps his hands. That’s not really a big secret though, that’s just wishful thinking. While we say how awesome it is that we get “VIP” treatment most places by getting ahead in line, better seating, and people even paying for meals, sometimes it hurts. It hurts because we really just want him and us to fit in. Not to get looks of pity as we pass by. We often hear how lucky he is to have parents like us. I’m sure it’s said with love intended, but I wonder what they mean. We give him the best life we can, we treat him like any parent would be expected to treat their child. So, I’m not sure why a disabled child would be considered lucky to have parents “like us.” I smile and thank them for the compliment anyway.

When I’m out and about without my kids and find myself telling people about how many kids I have and their ages, I always hear the same thing. “You are so blessed. It must be nice to have older children to help with the younger ones, you’re lucky.” While I am in fact blessed to have 5 kids in my life, I know it’s not exactly how they meant it. I start to tell them about my oldest who is disabled… but, I decide not to. Not because I’m ashamed, but because in that moment nobody feels sorry for me, or him. In that moment I’m the “lucky” mom in the check out line. When I do let people in on my life I hear a different tone in their voice. They follow up with something like, “wow, that’s terrible. I’m sorry. I don’t know how you do it.” I actually don’t disagree, I have no clue how I do it either some days. The problem is that, what’s the alternative here? Are they seriously convinced that I have a choice or some kind of super powers? I’m just a mom, in a club that nobody wants to understand.

Again, this might not sound so secretive, but for me it is. I feel like I have big shoes to fill, and I need to give the impression that I’m strong enough to carry around this responsibility alone without complaining. If I don’t put up a fight then he gets walked on and left behind in some situations, so obviously I can’t let anyone see me having a moment. So I don’t show that side. I can’t let anybody know that being in this club just plain sucks. If I do, new moms with a child like mine might get scared that they can’t do this. I’ll let you in on something, some days you really can’t do it- alone anyway, you need backup and that’s ok. I see all of the moms posting inspirational quotes that “my hero doesn’t wear a cape, they have autism.” Sometimes I get angry, not at them but myself. I get mad because I don’t feel that way and I think that I’m supposed to. Raising this child that completely depends on me is not something I would consider a great adventure. I’m sorry, it’s not. It’s hard, most days I cry at least once, I get mad. There are times that he doesn’t sleep for days, even weeks. At some point I get mad at him. I know it’s not his fault, but I’m exhausted. We avoid doing things that seem impossible with a wheelchair and we compare everything to the places that make it easy. I have days when I wish the bus would bring him home just 5 minutes late so I can enjoy when both toddlers happen to sleep at the same time. Then when the bus is even 2 minutes late I panic and wonder if something happened on the 6 minute drive home.

I spend a lot of time angry. I don’t like to admit it either. I take it out on the other kids and say things like “he can’t help it, but you can! can’t you just give me a break?” Honestly, I annoy myself. I see other parents find balance and wonder how. I hear that I must be supermom or that I handle it all and make it look easy. That’s part of this secret life I mentioned. I have learned to keep a lot of thoughts to myself so that I can live up to the expectations that everyone has of me. When really I only seem to be trying to convince myself that I’m good enough.

I get jealous of other families, other mother/son relationships, even though I have 4 other kids to build relationships with. There will always be that “I wonder what kind of relationship we’d have…” thought in my head. I know that the bond “T” and I have is something pretty awesome too. Even on a bad day, I know he loves me and I love him. I have learned a lot about myself since becoming a special needs mom, some stuff I wish I could handle better. But, for every situation I feel like I’ve failed, I know I’ve won even more. My husband always helps me see the best in every day, without him I would be lost. So when you see me “handling” it and you think to yourself, “I don’t know how she does that.” Just know, that I’m not sure either and just because I can keep a straight face doesn’t mean that I’m not ready to break down on the inside. So instead of staring, just smile. It’s actually pretty reassuring that I can actually handle whatever I’m going through, and you could too if it were you.

Thank you for letting me be real and share my thoughts. We all struggle with wondering if we are “momming” it the right way sometimes. I love being a part of this community that allows us to be honest and open without judgement!

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