On Raising Special Needs Kids

 One of the things I have learned most acutely through the last seven years is the importance, really, the absolute necessity, of having friends who are also raising kids with special challenges. Doing this alone is empirically impossible- the feelings of loneliness, confusion...the inability to relate to people with neurotypical kids. It's a lot. Consequently, I have been so grateful to have a close friend since we moved to Virginia who GETS it. Who has lived it. Whose son is a little further along than mine at this point and can empathize and insert hope into situations. Tonight, she sent me a text as we have been in the trenches helping our son recover from Covid reminding me that it's normal to be exhausted, that our lived experience is so different from so many others, that I need to hang on but it's ok to have feelings of being alone, overwhelmed and, yes, even hopeless sometimes. 

I have her permission to share her words. My dear friend, Kim Rodgers, gives us a small, but very honest glimpse into the world of parenting kids who are outside the mold. I will warn you - these are really raw words. There is no happy, contented words to conclude. Just a glimpse into the challenge. I encourage you, especially if you are NOT a parent to a special needs kid, to read this and seek to empathize. We are a lonely bunch.  

"We are in the shadows of life and the world. Just trying to make it through. 

We are trying not to compare our now to our friends, family's or neighbor's now. Trying not to be jealous of the routine or lack of. Or the trips they take. Living life on a whim verses planned and rigid- because an unexpected change or shift ruins and hour, a day or even a week. The errands that can be run spontaneously. The "normalcy" of school days without IEPs, 504s and behavior issues.

The friends that a neurotypical family takes for granted the level of normalcy that brings to a child's life- friends that come to play and play for hours. Going to a friends house and playing for house. Snacks that don't have to be planned and monitored. Sleepovers, always having a friend in class, at lunch, in activities. 

As opposed to the special needs family that prays every day for someone to just be nice and accept our child for that one day. That they don't get picked on. That they have a nice lunch- maybe even peers that talk to them or include them in whatever nonsense is happening during an elementary, middoe or high school lunch time. That they have ONE friend to play with at recess or that they get picked for a team. That they get an invite to the birthday party, the holiday party. 

Our worlds are so different they rarely merge. And the hardest part is as a special needs parent we are so used to trying to hide in the shadows or stay in the shadows because the spotlights that get put on us are never the ones of the starts but the ones of shame, judgment and disgust. 

So we bury ourselves. Deep. To protect. To survive. Because we aren't in the light as we try to hide. We are all of the tired. All of the hurt. All of the scared. All of the embarrassed. All of the pain. And all of the worry." 

Thanks, Kim, for your honesty. And for always, always reminding me we are not alone. 

Lonely Guy Checks In

It's funny what being embarrassingly honest can get you these days.

And by "funny," I mean "awesome."

Just last week I posted about being lonely, about how this phase of life, of being a stay-at-home parent, of rising each day and knowing that my primary companion for the day is more likely to pee on me than give me a good conversation, is a lonely place. And it was easy before I posted it to feel like that loneliness was something I was suffering, well, alone. That all the other parents out there were happily trucking along with some dear companions, sipping coffee and laughing at their children's tantrums together.

Myriads of responses later, however, the truth became apparent. This is a tough and lonely gig, people. For those of us, particularly, who may have had a job or career we loved or who never imagined staying at home past maternity leave, this may be the hardest and most isolating experience of our lives so far. (Let's leave middle school out of the reckoning for that title, shall we?)

Within minutes of posting, I saw other parents admit to being in the same place. Not only feeling lonely, but yearning for deep friendship, for the type of friendship that is comfortable, that requires no preparation beforehand. No personal grooming or domestic tidying. No kid in the perfect and sweet mood. And the funny thing is- I think we often think other people need us to put on that show that happens at the beginning of friendships. The small talk, the clean house, the perfect snacks and the deodorant. But really? I think very few of us actually care about that stuff, particuarly if not worrying about it makes it much easier for real relationship, honest interaction and easy camaraderie to be found.

So why do we make it so hard on ourselves? Why do we think we need to play a certain game here that, if we're honest, is just too exhausting to play?

I don't know the answer to that, but I do know that my week turned out very differently than I had imagined it would when I pressed the "publish" button on that post. Lovely texts and sweet messages and encouraging verses and invitations to hang out poured forth. I had a wonderful dinner with a newer friend and a fantastic night going deeper with some women I've known for a year now but still don't know as well as I'd like. I had a morning with two newer friends from church where our kids played long enough for us to actually say more than one sentence in a row a few times. I felt surrounded on Sunday by wonderful community as we baptized our sweet little man. Miracles do happen, friends.

Did I have that "person" come magically out of the blue? Of course not. That takes work, it takes patience, it takes putting myself out there- work I am trying to do. I did strike up two conversations with strangers at the library and the Y and get far enough to exchange names. I did laugh with new friends. I did feel like something could possibly change.

Bottom line, I hoped.

Hope is a pretty powerful thing.

Nate's tantrums didn't stop at the end of the week. It didn't get any easier on that front. But the thought of those texts, those calls, those invitations...well, it made the tantrums a little easier to bear. And the laughter I experienced at night with those new friends? Well, laughter is powerful, too. And its remnants can last long enough to get me through some of those tough mornings that follow.

So to those of you who joined in the conversation in honest and painful solidarity, I feel your pain and pray for hopeful moments for you this week even as I hope for more of my own. To those who texted or called or just made it clear that I can text or call you if I need to, thank you for reaching out to "lonely guy." To those with whom I laughed and talked, thank you for giving me what I needed to make it through the week feeling like I wasn't alone in this. To those I overlooked because of my own shyness or pain or isolation, I apologize and pray that my eyes would be clearer this coming week and that I would remember strongly that most of us really do yearn for something real and good and deep and are waiting for someone to extend the invitation.

Friends, let's be people this week who see those around us, who long to extend God's love and our friendship to them and who are open to what kind of laughter and magic might happen as a result.

I Am Lonely Guy

Our church has been going through a series about truly seeing what's around us. Opening our eyes, calming our schedules and being willing to really look. During this time, two men have been performing a skit called "Lonely Guy." Each week these two guys meet again onstage- really, crash into each other- and have an awkward interaction. They are both wearing sandwich boards- one that says "busy" and one that says "lonely." Predictably, the busy guy fumbles with his phone, mumbles something half-hearted in response to being reminded again that the lonely guy works at his grocery store and then goes on his way with the lonely guy staring after him. It all resolves when God intervenes and the busy guy truly SEES the lonely guy and they start to interact.

The first few weeks I laughed at this skit. I resonated with the busy guy- chasing my toddler around, too tired and frustrated to really see any opportunities around me and the men had done a good job keeping the feel of the skit light and humorous, even with its deeper message.

The final week, though? Something shifted. And I saw in the lonely guy the reality of my own life.

Just this morning I took my son to something called Wiggle Room. Held in our community center, it's a place for parents to bring their young kids to get out of the cold, let them play with different toys (and presumably, different friends) and just run around and get the cabin fever out. N and I have been trying to come every week since it started and have invited friends to come along. We had a few show up the first week but since then we've been on our own. Like we are most days.

Today I followed my son around and watched a lot of parents talking to each other. Mostly moms, a few dads and an occasional grandma. Their kids swirled around them, mostly playing well enough for them to have conversations with the semi-regular need to intervene in some kind of sharing debacle. I smiled at these groups of people. I tried to strike up some conversations with strangers. And it didn't really work. No one really talked back. I just felt alone.

As I leaned against the wall watching my ginormous toddler step on a kid to get to a toy, I felt alone.

As I chased him around, trying to keep him from knocking down other kids painstakingly built towers, I felt alone.

As I gazed longingly at people who clearly felt known and comfortable with the people around them, I felt alone.

I am lonely guy.

Bringing home a newborn baby in the midst of the coldest winter in recent years combined with hating to drive in snow, switching churches just before he came home and being a first-time SAHM was a tough combination last year. And when I reached the summer, desperate for human interaction, I realized that I had been dangerously sad. Tired. Alone. Dealing with post-adoption blues. Frustrated that this huge life-changing event on which we had waited for 5 years took place far away from our family and close friends. I spent the summer soaking in the amazing weather, trying to get closer to people I had met, hanging out with neighbors, treasuring time with my oldest during his vacation time. And I was determined that when winter came again, I would have a person.

You know who I mean.

THAT friend. The one you can call up last minute and who knows that all you need is company and coffee. Your house doesn't have to be clean and you don't need healthy snacks in your fridge. You don't have to have showered, which would be particularly helpful during this stage when my toddler thinks my shower time equals an opportunity for him to attempt to dive head first into the tub and crack his head open. The one who won't care if your kid throws his 5th tantrum of the afternoon because she loves him, too, and knows you are doing what you can to keep calm and make it through the toddler phase alive.  That friend.

As fall flew into the busyness of the Christmas season, I felt full. I was seeing friends sometimes, N and I were managing to get out of the house when the kids weren't sick and the joy of the holidays and visiting family loomed. I didn't really notice that I still didn't have that person.

But now? In the throes of deepest winter? I've got some friends. I really do. Lovely people. Friendly, inviting, welcoming. Most of them, like me, are pretty overwhelmed by the chaos of just getting their toddler from one end of the day to the next. And I enjoy my time with them. I do. I wish we knew each other better.

But I don't have that person. The one that makes life just feel easier. The one who knows me. Who knows that staying home is the hardest thing I've ever done. Who knows that sleep deprivation turns me into a maniacal human. Who knows that crying makes me uncomfortable and that I can't eat sugar. And BOY did I want to eat me some cookies after Wiggle Room today.

So, while I am going to continue to keep my eyes open and look for opportunities to SEE and love on people and try to get to know some of the people I already know better, I am also going to pray that someone, maybe "busy guy", will be keeping his eyes open for me, too. And that when I try to strike up that random and somewhat painful conversation at the next Wiggle Room, someone will see me, too.

And maybe, just maybe, by next winter I will not be lonely guy.

Choosing Real Life

Exactly one year ago, we spent one long, exhausting, sweaty, emotional day putting the whole of our life into a huge truck and saying goodbye to home in NC. We left with the deep hope of returning in just a few short years, with the uncertainties of life and new relationships in an entirely different part of the country in front of us and with the knowledge that surely we'd be able to keep in touch with these amazing friends we'd made during our relatively short time there. Some say this has been a big year for us. I say we've gone through more changes than is probably good for any one family to go through. New state, new home, new culture, new school, new job, new baby, new friends, new church, new winter experience (read, misery). New.

In a lot of ways it has been good. Wisconsin schools are amazing and as we approach the last day of school tomorrow I have a child who is not looking forward to summer vacation because of how much he will miss his class and his teacher. And while the winter was beyond awful, the summer here is beyond amazing. (We're still trying to decide whether the summer awesomeness outweighs the winter hell.) We've met some wonderful people and seen some beautiful places. We've seen our adoption happen after years of waiting and signed our finalization paperwork yesterday. One court date away from this particular journey's end.

But here is the reality right now. Much of the time, I am lonely. I am sad. I am isolated. I am missing home and friends and family and wondering again what it was like back when everybody just grew up and stayed close to home, raised their kids in that type of community, didn't go it alone halfway across the country. Much of the time I am slightly angry that we had to leave such an amazingly pro-adoption community of friends, that I had to say goodbye to people with whom I could truly be myself, a feat I don't often accomplish. But my current loneliness? Is it my husbands fault for following his dream across the country? Is it the winter's fault for trapping me inside for 4 months? Is it my baby's fault for reminding me again that I am just AWFUL at parenting during the baby phase?

No. It's my fault and my fault alone.

You see, when we moved here I was determined to stay connected back home and to connect here. I didn't want to come but I tried to embrace the adventure, think of it as 3 years of opportunity, tried to hope that our adoption would happen while we were here, that we would enjoy Wisconsin as much as we did NC. But rather than choosing the reality of connectedness, the hard work (for me, at least) of picking up the phone, of planning and following through on skype dates, of pursuing people here in face-to-face interactions at the park or museum or ice cream shop, I chose facebook. Over and over and over again.

Now don't get me wrong. Facebook has its good points. I get to keep up on news from friends all over the world, I get to share the deep joy we felt when N finally came home, I get to laugh at the crazy things that happen to people when do life together. But at some point, checking once a day becomes twice and three times and 10 and then 50. I put the baby down for a nap and run to my computer. Which obscure friend to whom I haven't spoken in 20 years will have posted an article that I'll read even though I've never even heard of the topic on which it's written? Which new parental controversy will suck me in, even though I actually don't care, and will it send me then spiraling into yet another pit of self-hatred when it comes to my clear shortcomings in the parenting department? And suddenly, 45 minutes later, the dishes still aren't done, I haven't weeded the garden, I may have even forgotten to eat and shower and the baby is waking up. More guilt, more frustration. It's a beautiful cycle, really.

The bigger problem of the cycle is the choice- I choose the fleeting feeling of connectedness over the deeper connections of real personal interaction. I choose the isolation and the safety of my kitchen table and a cup of coffee, rather than doing the hard work of getting past the "dating" phase in new friendships by actually meeting someone for coffee. I choose my own comfort, the quickness, the status that attemps to lure in comments so that I will not feel alone, even though I am actually more alone than if I hadn't posted it in the first place.

In short, I have chosen shallow, elusive intimacy. And it's not working, folks.

My knee-jerk reaction to this epiphany was to swear off facebook altogether. I'm pretty good at being all or nothing, black or white. I have enormous self-control, which is usually a blessing and sometimes a curse because of its rigidity. I woke up this morning thinking, "I'm not going to check it anymore. I'm disabling my account. I'm done. I have to choose real life."

Then I took a long run with my baby. I thought of all the friends all over the world and how I do legitimately enjoy hearing what's going on in their lives, how I love the life announcements and how it really is actually fun to see what the crazy people you went to high school with are doing now that we've all grown out of the stupid and selfish phase that marks those years. I thought of the good and the joy and the positives. And so I did what any logical person who is a raging "J" on the Myers-Briggs would do and made up a list of rules for myself. I will be on facebook less these summer months and here's how I'm going to do it.

(1) I will only check facebook once a day.
(2) I will set a timer for 15 minutes- that gives me a chance to read through my newsfeed once (without clicking refresh), comment if I want to, like a few things and then move on.
(3) I will no longer click on parenting articles. 90% of them end with me having a big knot in my stomach. The other 10% are great and I'll just have to trust my favorite parent friends to send me them via email if they are really worth reading.
(4) I will subscribe to the blogs I actually want to follow so I don't have to check people's facebook accounts to see if they are updated and then get sucked into a myriad of other activities.
(5) I will still post the occasional status update but I'll be a little more prayerful about why I'm doing it.
(6) I'll use the time I would normally spend on facebook making a phone call or sitting outside in the sun with my neighbors or actually answering long emails. Or yeah, doing the dishes. That might help.

I know this isn't a solution to my problem. That I'll continue to be tempted to choose the emptier route. I have some deep soul work to be done here and I'm hoping that God will meet me in that and help me figure out this deeper issue that continually tempts me to seek shallowness. That he'll heal me of settling for less and strengthen me to search for more.

In the meantime, though, year two in Wisconsin starts tomorrow. May it be a year that is marked by deepening friendships, less facebook, more joy and actual intimacy.