The wall

Last night we all piled into our 'camping out' room- my bedroom, the bedroom with the air conditioning. Me, Seth, Logan on his mattress on the floor and 3 dogs. The conversations are hushed, the light dim. The mood is so playful and relaxed as Logan and I joke with each other until I look down and he's asleep. I turn off the lights and sigh..I love this life..at this moment, all is perfect in my world.

We wake this morning and as usual I go downstairs with dogs and get my coffee. I hear the door open and then footsteps to the bathroom. The shower runs. A few moments later he comes downstairs in full work attire, ready for his Thursday workday. I am looking forward to the elevator ride so I can show him the "Hello Logan" sign I secretly stuck in the empty phone box.

Just as we are set to leave, we hit a wall. A big, giant, cannot go around concrete wall. I have hit this wall before and I still bear scars from banging my head against it. This does no good. There is no way over it, through it or around it, you just have to endure the pain of hitting it, back off, and wait.

There is no explanation really. Its confusing and beyond frustrating. It was a small argument over something dumb, but it sent him stomping to the bathroom, the only room that locks- and *click* it was all over, he was barricaded in and done dealing with me. (That lock is coming off TODAY).

I hate these moments. I really, really do. We have missed important things because of this concrete wall. We've been late to parties, missed appointments, rushed to things we had plenty of time to get to...I glance at the clock and know if I wait too much longer, I will miss a spot in the limited parking lot at work. I have to make a choice. I have to give him a choice.

"Logan, we need to go. You need to come out of there so we can go. I know you're pissed off at me, we can talk about it on the ride to work."

**********silence*********

 

So I leave him. I grab my stuff and go out to our shop to tell Seth "He's all yours". He looks confused because he had just been inside and all was well. I don't even have the patience to explain it all and he understands. He too has scars from the wall...

 

That frigging wall that separates us from our child. That horrible wall that prevents us from knowing what he really feels in those moments. I know he gets frustrated, I know he gets angry. He can't be happy and cooperative all the time. He is entitled to have those moments of being pissed off and having some time alone. It's just that damn wall...I hate it.

 

I drive to work in silence next to an empty seat that should have my co-worker in it. I realize my secret phone sign will go unseen. I wonder what he's doing or feeling. I worry that maybe I should have waited for him. I hate that wall for locking me out of his world. I am frustrated with this life...at this moment, all is empty and confusing in my world. 



Guest Post #2 - Shannon of Mommy Has Issues

 

Guest post by Shannon of Mommy Has Issues

 

 

I slip quietly into my 6 year old daughter’s room and avoid turning on the light. Before I wake her up for school, I peer through the darkness to stare at her peaceful sleeping form. Her eyes are closed and she has one hand resting gently on the side of her face. She’s kicked off all of the covers and is lying on her stomach with her knees tucked up underneath her body. She’s so still, so quiet, so lovely.

I bend down and place my hand on her back, whispering close to her ear “Oli. Oli. It’s time to wake up now.”

Slowly her eyes begin to flutter open. She puts her hand over her face and moans softly.

“I know honey. It’s time to get up.”

I sit her up in bed and lift her up and over the baby gate that keeps her from falling off the bed at night. She rests her head on my shoulder as I carry her down the stairs. Her body relaxes against mine as I talk quietly into her ear and ask her about her dreams.

“Did you sleep well baby girl? Did you have nice, happy dreams? You did, didn’t you?! You had nice, happy dreams and you woke up with smiles and are going to have a great day today. Today is going to be a fantastic day. Aren’t you excited?!”

I set her down at the bottom of the stairs and hold her hand as she walks into the living room. I guide her around the furniture and push random toys, which are lying in her path, away. When we reach her favorite maroon colored chair in the living room, I ask her to reach out her other hand.

“Here’s your chair Oli. Here it is. Now turn around and sit down while I go make your breakfast.”

She turns around slowly, scoots back, and curls up in the chair. I continue talking to her, telling her about the day, and asking her questions.

But Oli doesn’t talk back to me.

She doesn’t answer my questions or tell me about her dreams. She doesn’t complain about being tired or say that she doesn’t want to go to school. She never says that she doesn’t like her outfit or the way I’ve done her hair. She doesn’t wake up in the morning and run down the stairs, demanding breakfast or fighting with her siblings. She never wanders into my room to wake me up first, even though she’s six.

Oli doesn’t say anything. Oli doesn’t walk or run around on her own.

Because she’s nonverbal.

Because she’s autistic.

Because she’s globally developmentally delayed and has seizures.

Because she is also totally blind.

Oli was born without eyes.

Severe bilateral microphthalmia. That’s what her eye condition is called.

Blind. No eyes. Severe bilateral microphthalmia. Those words ran through my head a million times in the first few months…no that’s a lie, the first few YEARS after she was born. My baby girl was blind.

I couldn’t believe it. I had no idea anything was wrong with her before she was born. I had no idea until an emotionless doctor walked into my hospital room on her second day of life, while I was sitting on a bed with crisp white sheets, all alone, and announced that he didn’t think she had eyes and was going to be blind for the rest of her life.  

What? What did he just say? Blind. No. No! That couldn’t be right! I didn’t sign up for this! No one told me that this was a possibility when I decided to have children. I was supposed to have healthy children! My life was supposed to be filled with roses and rainbows and beautiful sunsets. Blind? How could she be blind? I had never even met a blind person! What the hell was I supposed to do now?

No one could tell me. No one really knew. We went to LOTS of doctors and specialists and sat through TONS of evaluations and examinations. We were told that she would NEVER do this and that she MIGHT do that. I cried, I pleaded, I screamed at God. I prayed that things were different. I wished that it had been me that had been born blind and not her. I couldn’t sleep. I couldn’t eat. I couldn’t understand why. Why did this happen? I dreamed in fantasy lands where my life made sense and I recognized myself in the mirror again. I pressured myself into exhaustion worrying about what she would be able to do. I lied to my friends at work and bragged about things that she wasn’t even doing yet.

“How’s Oli? Oh she’s great! She’s 18 months and learning to walk. That’s exceptional for a blind child! She’s doing so well! She’s right on track!” This is what I told everyone. This is what I WANTED for her. The truth? She wasn’t walking at all. Not even close. Unless you count me carrying her around with her feet brushing the floor and me moving her legs back and forth. Is that walking? No? I don’t think so either.

I used to think that her slower progress was somehow a reflection on me as a mother. I thought that if she didn’t do all of the “normal” childhood things and hit those milestones in a timely fashion that I had somehow failed her.

Turns out? I was wrong. What she is able or not able to do has nothing to do with my abilities as her mother. She will do what she will do regardless of how much time I spend worrying about it. Regardless of how much time I spend crying over it. Regardless of how much time I waste wishing it was different.

I also never told anyone how broken my heart was. I never said that once the sun went down and my family went to sleep, I sat out in my living room for hours crying and sobbing until I had no more tears. I never told anyone how much I hated it. I thought that if I said “This is really hard” you would hear “I don’t love my daughter.” You never heard that at all. You heard “This is really hard”. It was all in my head. I was wrong about that too.

Eventually, ahem…5 years later…I learned that I had to accept her for who she is. I had to come to terms with the fact that this was HER life, HER struggle. It was who she was. No matter how much it felt like this had happened to ME in the beginning, it hadn’t. It had happened to Oli. My only job was to love her and support her in any way that I could.

I stopped listening to doctors and therapists who told me that she would NEVER do ______.  They don’t really know. How could they know for sure? Oli is the only one who gets to decide what she will or won’t do. Only her. No one else. The absolute best doctor we ever went to was an oculoplastic surgeon at UCLA that when we asked him if she would ever have light perception said this, “Based on the MRI evidence that she is missing her optic chiasm, the possibility is unlikely. If it truly is missing, she will not see anything at all. However, I am only a doctor and the MRI is only a machine. We get it wrong sometimes. Oli will have to be the one to answer that question with any absolute positivity.”

I know right?! The BEST answer. And you know what? He was right. He was right in regards to all aspects of her life. You never know what a child will or won’t do until they show you what they are capable of.

 As parents…all we have to do is keep believing in them.

Summer Guest Post #1 Beth Navarro of Mother-naked

 

Guest post by Beth Navarro of Mother-naked. She is a mom, an author and a hula-hoop champion! Check out all of her awesome sites all linked at the bottom of the post. 

 

 

 

Mother-naked

By Beth Navarro

 

I don’t know what I thought parenting would be like. I don't remember that pre-baby brain of mine. I do know I could not have  possibly imagined all that has happened these last six years since becoming a mom. No amount of parenting books will prepare you. Not really.  And every parent you know will tell you some version of: “It’s hard. It’s amazing. There is no love like it.” Which is true, but until you experience it, they are just words. So I had no idea what to expect, but I did find a life preserver, writing about it.

A big reason why I write my raw and sometimes silly blog, Mother-naked, is because sometimes I have to see it in writing to believe that the shit that happened, happened. Yes, Beth, you really did worry for a good week that your six-year-old, Love Monster, would become a stripper because she dug poles so much and loved to be naked. And I made peace with it dammit. If I had to pay twenty bucks for a lap dance to spend quality time with my girl, I’d do it.

You have to laugh at your worries. And being a parent is naturally ridiculous. The shit you have to do. The shit you say. You can’t make it up. Running out of material is impossible. It’s REDICULOUS. Here you are barely hanging on to what you’ve figured out life is to be so far and you’re expected to raise this new human who looks up to you like you know everything. It’s a crazy situation. You go from rule enforcer to chef to butt wiper to their pet pony in a matter of minutes. You better know how to roll with that.

I stuck with writing  the more comedic side for a while until last year. I decided to follow my gut and write whatever felt true. If it came out serious, well damn, my readers would deal. I wrote about going through a silent internal war thinking I’m a bad mom and found I was not the only one. Though my next blogs on the docket are about how Love Monster huffs her teddy bear so hard it rivals an addict and their Scotch Guard static cling spray and how I’ve realized I’m  letting myself get bullied by my three-year-old, Smirker, for candy. Anything goes on my blog.

My other life preserver is all the amazing mom and dad bloggers out there. Being a parent really is like being in a club. The common ground is comforting. “Holy shit, your kid got kicked out of preschool once??? Mine too!” That rush of maybe-I’m-not-totally-fucking-this-up is addictive.

One of the first times I purused The Crumb Diaries on facebook, I was looking at a picture of Logan. I wish I could remember which one, not that it would matter, because all have the quality Love Monster noticed.

 “I love his smile,” Love Monster said looking over my shoulder.

That is what she saw. No differences. Just love and happiness.

Well that just made my sarcastic, sometimes-cynical self all warm and fuzzy. Though this didn’t surprise me concerning her. She’s always been so open. She herself is in a special ed class. She has ADHD and some sensory issues, but she is doing well. She just finished her first year of Kindergarten after a very rough start. I’ll never forget looking at her one day with worry in my eyes: Is she going to be okay? Will she catch up? Will she make friends? The look she gave me was startling. It said volumes, “Mama, It’s all good. I’m going to do it all. At my own pace. I’m doing just fine. You’re doing just fine.” I learn a lot from my girls. That is what parenting is. Learning. All of us. Learning.

What have I learned from Logan? To not judge. I thought I did this already, but I don’t think I really did. I look for his smile in everyone now.

What have I learned from Ally? To write and share with complete honesty. She feels like a soul sister. Thanks for the inspiration, Honeynugget. You are the real deal.

I must also add my girls and Logan would have a seriously good time playing ponies. The girl’s collection is getting out of control. And I’ve seen all 60 episodes of My Little Pony. More then once. Oy.

I will press on trying to figure out this Rubik’s cube parenting puzzle I’ve been given. Maybe one day all the colors will align. Or maybe I’ll realize that the mixed-up colors are just as beautiful.

 

Beth Navarro writes a blog, Mother-naked and is a children’s book author. Check out her facebook page and website!

Our date night

We went and saw Straight No Chaser last night (most fun I've had watching a show in a while). Logan is as big a music fan as he is a pony fan, but he can be particular. He prefers Ozzy or Metallica, and I wasn't really sure how he'd like this group.

We got to the Hampton Beach Casino Ballroom, parked and walked up toward the venue. The beach strip was rockin', wall to wall people, live music, lights flashing, video games blaring, alarms from winning pinball, men shouting about testing your pitching speed. Cotton candy here, corndogs there, the sights and smells overwhelming.

I look over at Logan and he's just taking it all in, grinning away.

We enter the Ballroom and I get carded, which he finds hysterical. I'm always catching myself wanting to jump in and answer questions for him, but when the lady asked him for his hands to X and directs him to the stairs, he doesn't need me. We get up to the box seats. He is overlooking the sea of people, still not sure what we are were there for. The last time we were there we saw Hollywood Undead, and this would be very, very different.

We sit for about 15 minutes before the lights dim. Spot lights come on, the 10 member group appears on stage. They start to sing. I look at Logan and he is expressionless, just watching. There are no instruments, and he seems perplexed. He glances at me like "this is it?" He goes back to watching.

Around song 3 I notice a tapping foot. Song 4 a broad smile. The group is FUNNY, which I didn't expect. I had really only heard a few of their songs, mostly Christmas stuff. I didn't expect them to be so engaging and entertaining- which really won Logan over. He was on the edge of his seat, anticipating what might happen next. It was really late for him, he'd been up since 5 am, so he was starting to fade during intermission- but as soon as those lights dimmed again he was totally wrapped up in the show. He kept whacking me on the knee saying something I couldn't hear over the music and crowd. I think he wanted me to pay attention- I was!!

They announced their last song, performed, then left the stage. Logan starts to push his chair back to stand up. I knew they would probably do one encore, but he didn't. When they walked back out, his face stretched into the widest smile I've seen in a while. After they were finally really finished, he turned to me and said "Bogan sing it dose duys". He wanted to get on stage and sing with them!

He was still thrilled the whole ride home and mentioned more than once that it was "fun Al!" He didn't go to bed until after midnight.

I had no reason to worry about him liking the show, I don't know why it even crossed my mind. Logan is just happy to be. Happy to be out and about and doing typical stuff. He was happy to be in the midst of that crazy summer crush at the beach. He was happy to be munching on appetizers, sipping a non-alcoholic strawberry daiquiri. He was happy to be out at midnight.

So simple, but so important to him.

Paper Clouds Apparel for Windrush Farm

One of the first pages I recall reading and loving on Facebook is Paper Clouds Apparel. I checked out their website and thought 'wow...I would love my kid to be part of something like that'. Since that time, Logan has been asked to be part of their fundraising efforts by being invited to be a guest artist for June.  I will come back to them after I explain the drawings and the charity we are working so hard for.

Some of you may know the story of his horse drawing. Logan, having developmental delays, was never comfortable or confident in his drawing or writing abilities. He refused for years. One day while cleaning his room a few years ago, I found a drawing of a horse under his pillow and my heart soared. I fell deeply in love with this picture. So in love, in fact, I had it tattooed onto my arm, then added more of his artwork.

 

Paper Clouds chose the horse, and the skull & crossbones to put onto shirts they create, and they give 50% of proceeds to our choice of charity- which is Windrush Farm. Windrush is an incredible therapeutic riding center that expands and enriches the personal, emotional and physical abilities of all those they serve by partnering with their horses and the environment. Logan has been riding at Windrush for many, many years and it has helped develop his love for horses, as well as confidence, balance, language and responsibility. If you have never heard of therapy horseback riding, you need to check out their site.

We were also asked if we would like a co-artist to join us for this campaign- and that awesome artist is Connor aka "Bug" at Rockin Autism Mom. He submitted some art too and you can see his on his mom's blog. ( I love the owl and I am soooo glad we are teamed up with them!) 

Okay- back to Paper Clouds. This company works with a different special needs school or organization every 2 weeks. ALL artwork used by Paper Clouds Apparel is created by individuals with special needs, like Logan and Connor. Paper Clouds takes that art and transfers it onto Earth friendly, super soft, bamboo shirts. (I have one, they are suuuuuuper soft). Paper Clouds Apparel hires individuals with special needs to package up all of their goods. 50% of the profits of these sales goes to the organization that created the art, or the artists choice of approved charity/organization. 

When you purchase a shirt from Paper Clouds Apparel on June 10th, you will: 1) Help raise funds that will help students with special needs continue to enjoy horseback riding. 2) Make jobs for individuals with special needs at the Paper Clouds Apparel facility 3) have a kickass super soft shirt that you will love- with Logan or Connor's artwork on it! This is a win/win!! 

**Bonus info**

2 more things! The first, when you get your shirt, send us a picture of you or your kids wearing it! The photos will go into a "Paper Clouds Apparel" folder on the crumb diaries page and the photo with the most "likes" will receive a gift from Logan and I. 

Second, every purchase will get you an entry into a raffle. If you buy one shirt, you are entered once. If you buy two shirts, your name goes in twice, and so on. We will select a winner in a random drawing and send them a special gift. Maybe a Slombie!

Don't worry- I will be sharing the heck out of this campaign once they go on sale. You will have all of the info you need, I will make sure! Thank you guys!! Love, Ally

It's here

I don't know that I was what you would consider a 'girly-girl', but I definitely looked forward to attending my junior prom. I wanted to get dressed up, and to see my friends dressed up. I was eager to see who might win Prom King and Queen, and who was going where afterwards. I was the oldest grandchild and my grandfather started his tradition of buying the granddaughters their prom gowns the year I attended my prom.

I remember buying that red dress, borrowing the shoes, and doing my own hair. I think my dress cost $99 and that was the only expense I had. I don't really recall much else about the whole thing. I don't know what I ate, I don't know who danced with whom, I don't know who sat at my table. But I remember the spark in the air of the whole night. It was glittery, sparkly, magical and everything I'd hoped it would be.

When I had a daughter, the prom eventually crossed my mind. I had as much fun watching Abby attend prom as I had at my own. Dresses were more expensive and girls no longer did their own hair, but the feel was the same. In our town all of the kids meet at our library, slip in the back door and the crowd gathers in front at the bottom of the staircase. Couple by couple they are announced and come down those stairs for everyone to oooh and aaaaah at the gorgeous girls in their dresses and the handsome guys in their tuxes.

Abby attended again the following year and it was just as much fun for me. I love the whole idea of it, seeing these kids who are typically in jeans and ponytails all glamorous for the night. I can see the magic in their eyes and the excitement in their smiles.

When Logan became a freshman it dawned on me..he is in highschool..there will be a prom. At that time I pushed it out of my head. Why worry, its so far away. Sophomore year I realized we'd become a year closer to this and I started to wonder about it. Would he go? Who would he go with? Why worry..its a year away.

This year, his junior year. Prom year. Here we go. No more pushing it out of my mind, time to figure stuff out. Okay, I will....I promised myself. But I didn't. I procrastinated, and went back and forth with the idea. We made a couple of tentative plans and they fell through. I stressed over it, I beat myself up over it. He couldn't miss this night, this milestone, this tradition. I was asking him if he wanted to go, and he would just shrug. He could go with buddies, but part of the fun is having the girl in the pretty dress by your side, and I wanted the whole shebang for him. I wanted him to have the full experience, considering this might be the only prom he attends.

After multiple conversations with Abby about what to do, she called me and simply said "Kevin bought me a flight home. Pick out a dress that Logan likes, I am taking him to prom." A weight lifted off of my shoulders as I said that out loud.

Logan. Is. Going. To. Prom.

I know it seems like a small, insignificant thing to some people. Some people don't care about the prom either way. But for me, it means everything. It symbolizes so much. It was the first time I looked at my date, who would later be my husband and the father to my children, and felt love for him. It was the first time I got to feel like a princess, and the first time I got to help my daughter to feel like a princess. It is a rite of passage, a small town tradition, a coming of age type of thing that is special to us.

I don't care if he owns the dance floor. I don't care if he doesn't understand what a Prom King is. I don't care if he spills his drink down the front of his rented tux. My kid. Is going to PROM.

The mother I've become

I've been a mom for lots of years. Almost 21 now. I've been a "special needs mom" for over 17. These are different kinds of moms, but the same in lots of ways.

I never in a million years thought I would be a mom of a kid who needed extra help. You don't plan for that in your head. You don't look at your toddler, who is doing everything right on target and perfect in your eyes, then rub your pregnant belly and think "yea, this next one will be completely different and need extra help for the rest of his life". You think things will go just like they did the first time. You will have a nice easy birth, go home and start writing milestones in the baby book. You will have play dates and dress the kid up cute and take it to the park and have coffee with moms while you all smile dreamily at your perfect little rugrats, while sharing the cute things they say and how high they can count.

Sesame Street will help you out, teaching your kid to count to 10 in Spanish, and Barney will teach it how to share. You think of all the stuff your kid is going to do, and wonder if he'd like baseball or soccer or maybe a skateboard. You look at the kids his age and wonder which ones his friends might be, or which girl may eventually be his first crush. Who will he sit with on the bus or at lunch? Will he be a good student? Or will he be a rebel? Maybe class president giving a speech in front of his class in the auditorium while you beam with pride in the front row.

You think of all the things that will happen...and then they don't. The milestones don't come, the playdates become less, the moms don't understand. You are a different kind of mother, thrust into a parallel universe and instead of football practice you are at physical therapy. Instead of speeches, you attend speech therapy..but you still beam proudly.

As a mother, I have goals for my children. The first time around Abby was hitting milestones left and right, mastering every goal set in front of her. She learned quickly, spoke early and well. She was a sweetheart, always chattering away happily, carefree and loving.

Logan was not. He was missing milestones left and right, struggling to master the basics. He didn't speak. At all. He became frustrated and hard to handle. He would scratch or bite or flail when angry, and you would never know what would set him off, because he couldn't communicate what he needed or what he was feeling.

I didn't know how to be this kind of mother. My kids were going to be right on target. They were going to be sweet, smart, well behaved and I would show how good I was at this mothering gig. I couldn't understand what went wrong, or how to fix it. I was no longer anchored, I was floating out into space with nothing to hold onto, and unable to catch my breath.

This was an odd time for me in my life, having one child who was so close to perfect and another who was struggling and so hard to help. I was very young, and had no idea what I was in for. I had no way of knowing how long of a journey I had just started, or how difficult it would be. I had no clue I would spend days on end at doctors appointments and my child would endure endless tests, pokes and prods.

I also had no idea how hard I would fall for this kid. My hard to handle, impossible to tame, difficult to help son. My wordless, biting, scratching, flailing kid, who I couldn't get to know because I couldn't communicate with him.

I am a different mother than I would have been, but as hard as its been, I love the mother that I am and the child that I have helped Logan become. It was worth every single frigging second. Every sleepless night, every long afternoon in therapy, every mile traveled to specialists office. Even though my child was not anything that I expected him to be, the day he was born I gave my life over to him and buckled down for the long haul. He owns my heart, and I would do anything I can to help him. He has become an amazing, inspiring young man and although he may not be the class president or football captain- I could not possibly be any more proud of him than I am.

I am so lucky to be his mom. I reflect each Mother's Day and look back on how far we've come. We're a damn good team.

Happy Mother's Day no matter what kind of mother you are. It's not always easy, we're not always perfect, but every day is a new day, a chance to try again. You can't predict or control the path you will travel with your child, but you can hold his hand while he jumps the hurdles, and cheer for him every time, no matter how small.