You Do You, Special Needs Parents!

I have been chided for sharing too much information about my son and his needs. There are people who say, “This is his story to share. That is, should he choose to do so.” Little do they know, our stories are tied pretty tightly.

Then there is the flip side. There are those that want to know the whole scoop. Anything and everything. They think I’m not sharing enough. I keep too many things to myself. I am too private. They just need to know to need to know. You now the ones. I used to get so worried still kinda do about am I giving away too much or am I sharing too little?

But these days I’ve decided it isn’t really about pleasing everyone else and their need to know. It’s about what is right for our family. How about you? Where do you fall in this? Sharing is caring? Or do you keep it close to the vest? I’ve decided whatever is right for you is probably right.  We need each other in this special needs world; building one another up in Christ. You do you, Special Needs Parents!You Do You

The truth of the matter is, there aren’t many of us out there in our communities to whom we can reach out. We are an island. Or a beacon. Or an island with a beacon! At times it can feel like we are by ourselves out here with a spotlight shining on our differences. Our differences are quite noticeable whether we like it or not. If we leave the house we get noticed. If we go to church, Target, a restaurant; we get noticed. (Notice: these are the only places we go.) Once in a while we find a family across the room that is similar to us. Or a face in the crowd that ‘gets it.’ When this happens? “Laaaah!” It’s like angels singing. Our family all says, “Loooook!” It’s even difficult for us to not stare at a special needs family. I bet it’s even more difficult for us than for others. We are so drawn to families that have special needs because we aren’t seen out in public often. We can’t stop looking at this rare sighting! We want to feel the solidarity, the togetherness another special needs family can offer. (By the way, we totally get why y’all aren’t out in public much!)

When my son was younger it seemed the information and support was easier to find. But as he has grown into more of a man these have dwindled. When we found ourselves in a real pickle with his behavior, the help had all but dried up. We found ourselves holed up in the house for most of the time without any direction.

I decided then that I would share our story. Because I couldn’t find any one else’s stories or solutions, I would share mine. About that time I came across a book; someone sharing his family’s disability story. “Laaaah!” Someone who “gets it.” Here was someone who finally said what we felt. Disability wasn’t easy. But God wasn’t going to leave us alone in it either. I am so thankful he shared his story. Sharing was caring! That story led me to a whole network of families who are each living out special needs in different ways, yet helping each other in their walk. God is using these stories to help us through difficult times. You do you, Special Needs Parents!

I don’t know your story or how God is leading you. In my case, I hope I can help just one person by sharing a piece of our story like others have helped me. I’m trying to find a balance. Somewhere between shutting ourselves off/not helping anyone with what we have experienced and being too loose-lipped with our life is where I want to be. Being a special needs parent can be a tough road at times. We need each other as a source for support and guidance. I love hearing how Christ is leading other families touched by disability. I want you in my club, my tribe, my squad, my <insert trendy group name here>! I want to hear how God is leading your family. Whatever that may be, you do you, Special Needs Parents.

1 Thessalonians 5:11 “So speak encouraging words to one another. Build up hope so you’ll all be together in this, no one left out, no one left behind.”

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One of the Hard Days…

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I don’t doubt God’s providence. In fact, I’m thankful for it. But that doesn’t mean there aren’t hard days. Last week was one of them.

We sat in a near empty local restaurant that is usually overflowing out the door with waiting families. But on this night it was graduation for Evan’s high school. We could have participated, but we chose to avoid the overwhelming festivities. Sitting through an extra long church service or even an especially long restaurant dinner can be asking too much of Evan. So hours on end of listening to name after name on graduation night seemed like a disaster waiting to happen. Who are we trying to please by forcing him to sit through the ceremony? What ‘should have been’ now seemed unnecessary pomp and circumstance.

It’s still one of the hard days.

My tiny town’s local newspaper is flooded these past days with picture after picture of smiling graduating faces. And that’s as it should be in small town America. These are the same kids Evan has grown up with, went to kindergarten with. The same kids he high-fives in the high school hallways. These are the kids I see in their graduation gowns on the verge of the rest of their lives.

I am so so happy for them, especially the kids I know personally. But it’s still one of the hard days.

I love my little hometown. But disability is hard here. Or maybe I should say, disability is boring here. There aren’t many options for the special needs graduate. Graduation is a harsh reminder how ill prepared the special needs ‘graduate’ is. Like most small towns in America, things have been done one way for a long time here. Change won’t be happening overnight here for those with disability. Options are limited. And the options we do have aren’t working out for Evan.

I know God has a plan. We just have to work a little harder with Evan to figure out what that plan is going to be. But it’s out there.

I don’t like writing about the hard days. I don’t like people knowing about the hard days. I want others to know about the joy of special needs. The hope I have in Christ in the midst of disability. I want everyone to know how those with special needs are not a whole lot different from those without that label. But just like those without the disability label, there are hard days. This time, what others deem a happy day just happens to be one of my hard days in disability.

I am trying to remember just because it is a hard day doesn’t mean I can’t have joy. It doesn’t mean I can’t have hope in Christ. I just have to work a little harder to find it on one of the hard days.

Stuck On Repeat. 

* Some names have been changed. You know why.

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Almost every day my husband purposely sings a song with the intention of getting the tune stuck in my head. It’s usually something obscure and fairly terrible. (Shhh. Don’t tell him I secretly find this endearing.) With the exception of Friday. On Friday I can count on him waking the whole house with Rebecca Black’s fabulous and memorable gem, “It’s Friday!”  Sing along, “It’s, Friday, Friday!” Do you have it stuck in your head now, too?  Good. Now I’m at least not singing it alone all day long. You don’t know this song, you say? Do NOT Google this song! Whatever you do, stay in the dark on this. You are better off not knowing this song. You have been warned. You can find the rest of us with this song stuck on repeat, banging our heads, humming this tune, ALL. DAY. LONG.

My son, Evan, gets things stuck in his head too. Many of you may be familiar with the world of special needs repetition. It can be overwhelming at times, to say the least. Lately, he has been telling me about a girl in his class that has a bag. He LOVES bags of all kinds. I’m pretty sure this girl has carried a bag to school since the beginning of time. Or at least since they have both been about three years old. For whatever reason, 15 plus years later, Evan cannot stop talking about it. Every day. “Dani has a bag.” He says this with complete excitement and the utmost surprise. “Dani has a bag!” Every day. It’s stuck in his head. I hear about it when he gets in the car after school. He will tell me a couple of times on the ride home. Then I’ll hear about it a few more times throughout the evening. And again at bedtime when he is stacking his bed full of bags for the nighttime routine. “Dani has a bag!” It’s stuck in his head and he can’t get it out.

It’s kindof comical when we get songs stuck in our heads. Annoying, yet comical. We joke about it. We sing them out loud to anyone who will listen. No? Just me?. (My family secretly loves me for this, I’m sure. Mary Poppins sing-a-long, anyone?) But it’s acceptable, right?

Why isn’t it as acceptable when our kids with special needs ask the same thing over and over? Or tell us the same story day in, day out? I understand the difference between the two situations. But we tolerate one, and have trouble putting up with the other. I’m wondering if maybe we really aren’t so different from each other after all.

We all get stuck

Maybe it’s a song that won’t leave our mind, a worry that won’t leave our heart, a dream we just can’t let go, or a hate that won’t let up. (<gasp> What hate? Who me? I am a Christian! Yeah, me neither.) Getting stuck on something, somewhere, or on somebody ~ it can be all we think about. My son just vocalizes what many of us hold in. But we all get stuck on repeat.

Patience is a Virtue

At the end of the day, when Evan is piling his bed full of bags, but can’t find the YELLOW BAG!, I have usually reached the end of my rope.  Especially if I have heard the same thing (“Dani has a bag!”), answered the same question, and repeated myself for what feels like four-trillion times. Lately, I’m trying to remind myself, just like Evan, I get stuck too.  Stuck thinking the same thoughts, dreaming the same dreams, or hating the same hates. Over and over. So when I’ve hit my limit I tell myself he isn’t so different from me. It helps me be more patient. I’m reminded that I may be overwhelming to God with my banter, too. (As if God could be overwhelmed.  But if anyone could, the yackity-yac in my head may be just the thing that sends him packing.)

Are you stuck on repeat? What’s got you stuck? Maybe your children are stuck? Evan’s daily repetition reminds me to be patient and go to God when we get stuck.

Remember Jonah and the Whale? He was stuck big time. No gettin’ out of his kind of stuck without God. He prayed. And God heard his cry.

Jonah 2:1-2 “… He prayed: In trouble, deep trouble, I prayed to God. He answered me. From the belly of the grave I cried, ‘Help!’ You heard my cry.”

Here’s The Lone Bellow’s song worth getting stuck in your head:

I Need A Nap

A family friend came over and didn’t see me. He asked my husband if I was taking a nap. Whaaat? I was folding laundry, by the way. I’m not really sure where he got the idea that I would be taking a nap for no reason. I wasn’t sick. Is this what he thinks stay-at-home moms do? We take naps?

Today, I need a nap.I Need A Nap

Last night I partied all night. And by ‘partied’ I mean I checked blood sugar a good part of the night for my young adult son with special needs before he insisted he sleep in my bed. This woke his younger brother who also had to come to the big bed. Which then left me awake the rest of the night while clinging to the remaining four inches of said bed. So, yes, I need a nap.

But I won’t get one. Stay-at-home moms don’t get naps. Short of being sick, naps don’t happen, dear people. I’m not sure what the rest of the world thinks goes on while you are busy making the world go ’round. But before 7:00am today I had one child on his indoor trampoline because he couldn’t self-calm himself down without burning off some energy. The son with special needs had already puked on me. All of the breakfast and medicines with it. And no, he wasn’t sick. This is just a normal day around here. This was, of course, after everyone was fed, dressed and bathed, ready to head out the door for school. Remember, this was also after my night of ‘partying.’ Yes. I NEED A NAP!!

Stay-at-home moms get a bad rap. Everyone tells us it’s ‘the most important job in the world.’ But then we get asked questions like, “What did you do all day?” and “Is she taking a nap?” I hate running into people  I haven’t seen in some time because I know they are going to ask me the “What are you doing these days?” question. Today, I’m folding laundry. Again. Let’s glance back to the first paragraph. Folding laundry. Yes, I do this every day. Because everyday I wash the laundry filled with the yuckies of the previous night. All so we can sleep (hopefully, sleep, precious sleep) on the beds of clean sheets and wear clothes without puke, so we can begin again another day. Clean. It doesn’t feel like the most important job in the world, that’s for sure.

I need a nap. But I won’t be taking one. I love what I do too much. Others may look at me strangely when I say I stay home with my boys and I wouldn’t have it any other way. Do I like getting puked on and being up all night with tears and unmentionable issues? Eh? If I could make them sleep all night in their own beds without these issues that would be a bonus. But today as we got in the car for school there was laughter. There were prayers to God from both boys for their friends, for their bodies, and for their dad. I got to be there to hear all of that; the laughter, the prayers, the brotherly love.

Think what you want about me. I am a stay-at-home mom. I love it … And yes, I need a nap.

What I’m Reading: Looking For Lovely, by Annie F. Downs 

Looking For Lovely: Collecting The Moments That Matter by Annie F. Downs

Looking For Lovely

Truth is, I’ve been ‘looking for lovely’ for a lot of years now. Every so often I get a glimpse of it. But it never stays. It’s fleeting. Lovely is one of those things, even in my youth, I’ve never really felt fully. There has always been someone prettier, smarter, bolder, more confident in themselves. Lovely has always been just out of reach.

That hasn’t changed much as I’ve aged. I had hoped I would have had ‘it’ all together and be ten kinds of cool by now. I would be that confident woman who wasn’t bothered by the thoughts of others … Or even more so, the thoughts of my own mind. Maybe it was those few years of being told over and over by someone I wasn’t good enough? Maybe it was knowing that because of my poor choices in the past I wasn’t reaching the hopes of people I held in high regard? Whatever the reason, to this day, I struggle with the number on a scale, the face in a mirror, and the words running through my mind. I am still ‘looking for lovely.’

When I started seeing Annie Downs mention on social media she was writing a book I was excited. She writes in such a personal way you feel you are close friends. I have always enjoyed her writing for young women. She is a voice I could have used back in the day. Let’s All Be Brave is a favorite of mine to give to young women because these are words I could have used. But Looking For Lovely, these were words that I needed to read here and now.

Annie speaks of her own “broken crazy.” Some of the things that keep holding her back in life hit a little too close to home at times. She writes of a cycle of struggles and hurts that come crashing down until she has no other choice but to face that “broken crazy.” I think a lot of us (me) can relate to those crazy moments.

But what I love and related to most in the book was her way of pointing to the beauty outside of herself. When we are constantly looking inward we (I) tend to find the crazy. When I look outward to things God has made I will find more of his beauty; in music, nature, even a physically freeing activity. When I am full of his beauty I am more likely to feel the beauty in me.

I am now watching for the lovely, as Annie has shown me. It’s there. It’s all around me. God has it for me. I just need to be ready for it.