Books for Siblings

As we realized our family was being shaped by disability we recognized we were ill equipped to help all our children flourish. Neither M nor I had been raised with a sibling with special needs. We had zero emotional tools to share with our kids.

I began reading a lot of children's literature. Inter-library loan became my best friend. I zoomed down numerous bunny trails as my choices garnered more suggested reading lists. I read reviews, I read descriptions, I read and read. I read trash and I read gold. From all of this reading I made a list of books to recommend to others. Though the hunt for good literature can be thrilling, it is also time consuming. Most families impacted by disability don't have the luxury of extra time.

On the off-chance a parent reading this does have a few moments of solitude, I recommend that you read the books, too. The books geared toward later childhood and adolescence provided an interesting insight into parenting. By reading between the lines I was able to see what behaviors and attitudes from the parents further antagonized their children. There is wisdom in learning from others' mistakes, even if the others are fictional.

I'm posting my list below of recommended reading for siblings. They provide children with validation and the vocabulary to express their hearts. I have read most of the books. There are a few that, because of the diagnoses depicted, I did not read. Those that I did not read myself came with strong, positive reviews. So I'm hoping those people weren't ding-dongs. It could ruin my reputation for being a connoisseur of children's literature.

Addendum: I recommend every child read books that feature other children with special needs. Siblings are not the only ones changed by disability. Each one of us can be, and should be, if we allow ourselves the opportunity. Certainly if your child has a cousin or classmate or neighbor with a disability, they need context and vocabulary and information. But even if they can not identify a single person with special needs in their lives, they need to be prepared for when they do. 

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Anything but Typical by Nora Raleigh Baskin. For ages 10-14. A story about a twelve year old boy with autism. Provides perspective on living with autism.

Barry's Sister by Lois Metzger. For ages 9-12. A story about a girl who has a brother with cerebral palsy.

Ben, King of the River by David Gifaldi, Layne Johnson (Illustrator). For ages 6-10. A story about a boy with a younger brother who is developmentally disabled.

Joey and Sam by Illana Katz and Edward Ritvo (Authors), Franz Borowitz (Illustrator). For ages 6-10. A story about a boy with a younger brother who has autism.

My Brother Charlie by Holly Robinson Peete (Author), Ryan Elizabeth Peete(Author), Shane Evans (Illustrator). For ages 7-10. A story in which Callie talks about how much she loves her twin brother, Charlie, who has autism.

My Brother is Very Special by Amie May (Author) and Laurie A. Faust (Illustrator). For ages 4-8. A story about a girl with a younger brother who has a speech delay.

My Brother, Matthew by Mary Thompson. For ages 4-8. A story about a boy born with a brain injury.

My Brother's Keeper by Michelle Beachy. For ages 5-10. A young boy describes living with his younger brother who has multiple disabilities.

A Real Christmas This Year by Karen Williams. For ages 9-12. A story of a girl’s brother, who suffers from multiple physical and emotional disabilities, and his impact on their family.

Rules by Cynthia Lord. For ages 8-12. A story of a 12 year old girl who has a brother with autism.

Sara’s Secret by Suzanne Wanous. For ages 4-8. Sara's secret is her brother Justin, who was born with cerebral palsy and is intellectually disabled.

The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs by Don Meyer (Editor), David Gallagher (Foreword). For ages 12 and up. A collection of 50+ questions answered by teen siblings of people with special needs.

Tru Confessions by Janet Tashjian. For ages 9-12. A story about a 12-year-old girl who grapples with her two ambitions to cure her developmentally delayed twin brother and to host her own TV show. She tells her story through a journal.

Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs by Donald J. Meyer (Editor), Cary Pillo (Illustrator). For ages 6-12. A collection of essays from siblings of children with special needs.

Way to Go, Alex! by Robin Pulver. For ages 4-10. A story about a girl with an intellectually disabled older brother who participates in Special Olympics.

We'll Paint the Octopus Red by Stephanie Stuve-Bodeen, Pam Devito (Illustrator). For ages 4-8. A book about a girl who has a little brother with Down syndrome.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Sweet Ride

Last week T-Man's therapist greeted us with a super happy face and great news. The AmTryke that a local group had sponsored had arrived. Plus, our phenomenal PT, Dave, assembled it. Woo Hoo! This thing is such a blessing. Exercise, fun, and a normal-ish childhood are all included. Plus a matching helmet.

AMBUCS is the group that sponsored T-Man. They serve people with disabilities, including children and veterans. They have chapters all over the country. If you are feeling inspired to help people near you gain independence in mobility, you can find a group close to you by clicking here.

As you can see from the video, T-Man is rocking his new trike. We are all so excited! The happy voices are me and Dave. T's been working with his both his PTs on one of the facility trikes for months. He didn't just hop on and take off. This is lots of hard work coming to fruition. I'm thrilled we can continue making forward progress at home now, too.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

More of Me

I'm thinking of writing more frequently. I don't want to make any promises, but I feel myself drawn to the keyboard more often these days.

A sudden influx of blog topics fill my brain last week. So I grabbed a pen and started jotting them down before they flitted away. N saw the list later and said, "Who wrote on my masterpiece?"

Doh! That Mom-fail actually made me wince. Clearly, I will not be writing about "How to Nurture Your Budding Artist" or "Top Tips for Preserving Children's Art."

Truth be told, I will not begin writing about the sunshine and roses in any aspect of my life. I won't detail my great moments in an effort to serve as "inspiration." I'm choosing the path of reality not because of my vast integrity, but because if I didn't, my posts would be one sentence long. For example, today's positive message would be: Dear Internet, I brushed my teeth this morning.

I'll stick with my standard honest accounts of being a ding dong who cares about a few important things. As filler, I will likely tell on myself. Which is why I'm not fully committing to this writing-thing quite yet.

This evening I dashed to the library to check out stupid diet books. I reasoned that my wise diet hasn't been working, so I need to try something different. I found a new stupid diet so quickly that I needed to kill more time before returning to the screaming tribe of children. So I went for ice cream. 

True story.

I turned the top book over so the guy at the window wouldn't see the subject matter as he handed me a giant cup of frozen sugar/fat. As I ate the sundae my stupid diet declared, "You've got to stop eating unhealthy crap."

I'm already thinking this stupid diet may be one of my dumber ideas. Right behind deciding to publish my antics on this blog.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

We Need a Secret Handshake

My dad is a biker. I've spent many an hour on the back of a motorcycle, weaving between cars and soybean fields. Whenever we pass another motorcycle my dad's left hand drops from the handlebar in greeting. So does the other biker's. It's cool. It's community, without saying a word.

I remember my former stepmom telling me the story of when she dated an older guy when she was in high school.  She was busted when her dad shook hands with the guy. Apparently, they were both Masons, and they have a secret handshake.

I escape my house for short solo errands with increasing regularity these days. When I'm out on my own, it isn't obvious that I'm a mom to a child with special needs. When I see other people from the disability community I want to say "Hello there, keep up the good work!" without being a complete weirdo and actually saying it. And frankly, sometimes when I'm by myself, I don't feel much like talking. Between raising one extreme extrovert and two other children learning how to talk, I'm tired of chatting. We need a secret handshake.

When I'm feeling particularly brave I decide to go out with my kids. (Besides therapy, that doesn't really count) It's usually the grocery store. And only if we're all having a good day. I try to truck it through the store to keep it a good day. I don't have time to visit. When dashing the aisles with my cart of kids and calories, it would be nice to have a way to acknowledge our community, without stopping to say a word.

My son's disability isn't always visible. If he's happy and wearing pants, most people would never guess his diagnoses. If he's screaming, grabbing his ears and showing off his MFOs/AFOs, our reality is a bit more obvious. On the invisible days I need that secret handshake to let others know I'm in the club, too.

Only it can't be a handshake.

Our hands are already full. And our feet are usually moving at a rapid clip. I'm thinking we need a wink, and pointy finger-thing. Sorta like the Fonz. But no thumbs up, because we're inspired by him, not replicating him. We won't say, "hey" or click our mouths when we do the wink. That's a bit too much.

I can already hear one sister's eyes rolling while the other one calls me a dork. So I'm open to suggestions. But, really, we need a secret handshake.

Me and my ticket in:

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Hazel, Queen of Brownies

My Place of Beauty

This child is gorgeous. Strangers gasp when they behold her. Though unfathomable, her physical grace is exceeded by her stunning mind, heart and soul. Every part is dazzling.  I have such joy in drinking in her girl-ness. My heart surges and aches within my chest as it tries to hang on to so much beauty. My daughter is lovely.

My Place of Adventure

This boy stretches and pushes and pulls and shoves me. He plunged me into parenting. This face breaks into a ready grin in anticipation of whatever exploit lies before us. He hunts magnolia blossoms with me. He reminds me that earth worms are fascinating treasures. He provides a living soundtrack for my life.

My Place of Peace

Oh, my son. These eyes absorb my tattered heart and reflect a whole one back to me. There is healing here. Every cheesy line from every happy song is fulfilled in him. Everything is beautiful when I stare into this face. Deep riches are stored here, and he gives freely.

My Place of Love

My man. He sees my beauty, my brokenness, my silliness, my charm, my wit, my bitter, my calm. He sees everything about me and yet the love I see in his face never waivers. In fact, I do believe I see more affection and esteem in his gaze now than I did during our courtship. He loves me through and through and through. Unspeakable, immeasurable. His love has brought me much good.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Once Upon a Sunday

I went to a new church recently. It is a small congregation but has a number of people with special needs there. They are well equipped to walk alongside a family living with disability.

The pastor's message was titled, "Love as Jesus Loves Us." I didn't get my hopes up too high since I've heard this thing about 87 times growing up in church. I was pleasantly surprised when two things jumped out at me. 

Jumping Thing 1
The pastor broke down the following passages in a way that helped me understand anew the absolute necessity of love.

One of the teachers of the law came and heard them debating. Noticing that Jesus had given them a good answer, he asked him, “Of all the commandments, which is the most important?”

“The most important one,” answered Jesus, “is this: ‘Hear, O Israel: The Lord our God, the Lord is one. Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.’ The second is this: ‘Love your neighbor as yourself.’ There is no commandment greater than these.” Mark 12:28-31 NIV

 “A new command I give you: Love one another. As I have loved you, so you must love one another. By this everyone will know that you are my disciples, if you love one another.” John 13:34-35 NIV

Here's the breakdown:

Greatest - Love God

Second - Love Neighbor

New - Love Believers

I think having it simplified help me feel the weight of love. It's easy to treat love as an after thought. It is to be given supreme focus and attention. Love. 

Jumping Thing 2

God does not ask us to do what He Himself isn't willing to do. Jesus truly understands the hard stuff, because He has done it, too. (Hebrews 4:14-16)

As I perused the additional verses the pastor pulled to demonstrate the manner in which we are to love the word "as" grabbed my attention. I've underlined it below to emphasize it.

and walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God. Ephesians 5:2 NIV

But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, His Son, purifies us from all sin. 1 John 1:7 NIV

Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you. Ephesians 4:32 NIV

Accept one another, then, just as Christ accepted you, in order to bring praise to God. Romans 15:7 NIV

As I read these verses another one came to mind from Romans:

For those He foreknew He also predestined to be conformed to the image of His Son, so that He would be the firstborn among many brothers. Romans 8:29 HCSB

Alright, the reason why this thrills me so is these days I feel impossibly far away from conforming to the image of His Son, Jesus. The only thing it seems we have in common is dark hair, and my color is by Clairol. But Romans 8:29 is pretty much a guarantee that I will end up Christ-like. If God pre-destines me to be something, I'm going to be it. All of those other verses that talk about love and kindness and compassion and forgiveness and acceptance are going to happen for me. Not because I'm a rockstar. But because those are Christ's qualities. And His qualities are mine. Eventually.

Yes!

Oh to grace how great a debtor, daily I'm contrained to be.
- from Come Thou Fount of Every Blessing

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Us. Them.

The past year has been identity shifting in many ways. One of the more surprising ones for me is that I no longer feel like a nurse. When I used to interact with healthcare providers I felt like an "us" who came in street clothes. Being on the other side of the reflex hammer through 2 hospital admissions and twelve specialists, though, has left me feeling that health care providers are "them."

The hospital stays really finalized the shift for me. When we did the Pre-Op tour I felt uncomfortable in my flip flops. I wanted to curl my toes under. I had never, ever been in a clinical setting with open toed shoes before.  But day after day of living in a hospital as the mom broke me of that. By the time we left I had no qualms as I sauntered about the place in my sandals.

As a nurse I never truly understood the families that would call to ask for help with simple tasks. I felt they were lazy. And I would cut a hard look when I found out they had turned off an IV pump. When my consecutive hours in a hospital topped 100 I understood the families better. 

Some days I wanted to do every task myself because it gave me something to do. Other days I wanted to do nothing because I was exhausted and couldn't think straight. 

Everybody on the planet knows those pumps are annoying. It's intentional. It gets the nurses' attention. But it also made my brain cells start dying at a rapid pace. Hearing it from the hall for 12 hours is different from having it by your head for a week.

I recognize that I started getting cranky during our hospital stays. Looking back I have tried to factor that in as I consider the way I was treated. Factoring in my irritability, there were people who truly treated me like I was an idiot. Which didn't do much to help my crankiness. Having my intelligence change each time someone new walked in the room was maddening. Some talked to me like I was an equally valuable part of the team. Others treated me like I was the child with a developmental disability. 

Being stuck in isolation made me hate everyone. That was not the nurses' fault, I had shifted from cantankerous to downright ugly at that point. 

I am fully entrenched in this Mommy-thing, but do occasionally wonder what I'll be when I grow up, now that I'm not a nurse. One of T's speech therapists suggested I become a Speech Language Pathologist, since I do it every day anyhow. I did investigate programs and the best ones in the country is near one of my best friends. We'll see if the wind blows me to Iowa in twenty years.  

I also think being a park ranger would be fun. 

I've dreamed of a ministry where some woman I know and trust comes and takes my healthy kids when I have a sick one at home I want to focus on. I'm pretty sure I would have to create, it, though. I'll call the ministry, and the women who volunteer for it, Owa. It sounds grandmother-ish without stepping on toes. At least I'm assuming no grandma goes by Owa, since I made it up from "older woman." Young moms shouldn't be the only ones helping each other out. We need some backup from those who aren't in the trenches. 

I've also thought about being an exercise instructor. That would guarantee me time in the gym. 

Microbiology still thrills me. I actually printed off the application for MITs program. I decided not to submit it at this time, though, as they want to know my career goals. I don't think "raising babies" will grant me admission. Maybe I'll look again in a few decades.

Though I'm not a nurse anymore, I do retain some nurse-ish qualities. I prefer military time. I write notes in medical shorthand. And I make Medication Administration Records when my kids go on antibiotics. Old habits die hard.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Blowing On Embers

The house we're renting has a wood burning fireplace. In the cold months we frequently start a fire once our littles are asleep. Everything about it is lovely. The pops & hisses make a melody of their own. The flames jump and pulsate in an intoxicating dance. The heat roses our cheeks and unburdens the furnace. And it has given me a picture of my heart.

Sometimes when we wake in the morning we find embers still faintly glowing, despite hours of neglect. It's fun to blow on them, watching their heat and light increase with our breath. A few times we have seen a pile of gray ash, assumed it dead, but discovered embers hidden underneath. Most days, though, the remains are cold and lifeless.

Like a neglected fire, the warmth and life within my soul has been slowly dying. I felt the cooling begin shortly after we moved from Kansas City. I fought valiantly, attempting to restore the flame through prayer and Bible study and exercise. The slow decline continued. Sometimes I would feel a brief flare up, but would quickly cool again. 

I'm tired of the flares. I want a roaring fire, or I want nothing. I don't want to go to a conference. I don't want to read a self help book. I don't want to be a good Christian girl. I want Jesus. I want the joy of my salvation returned to me.  Though there are moments I despair, the drive for a roaring fire hasn't left. I want to be joyful and peaceful and patient and silly and kind. I want to commune with God.

The ability to create a single flame clearly does not belong to me, though. I feel guilty for not praying more, or better, and for not reading my Bible more. Astoundingly, those feelings have not spurred me on one bit. I am incapable of breathing life into my own embers. I am completely dependent on God to rescue me from this mediocre soul.

But I know He will. 

Though I feel like a cold pile of gray ash, the desire to write this post serves as proof there must be at least one ember hidden somewhere. I am optimistic that some poking around will reveal a spark underneath. And I have faith that Jesus will breathe life into me again. He's the only One Who can.

Breath of Heaven, hold me together.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

This Time A Year Ago

I've been feeling nostalgic for the last two weeks, but have found myself unable to plunk down in front of the computer. Two out-of-town trips, a birthday, a party and two major holidays left my words to percolate in my head. My heart has grown warmer and softer and larger and all sorts of -er adjectives as I have focused on the beauty of my daughter.

This time a year ago I had a baby in a wheelchair in triage. When I finished roaring the first words out of my mouth were, "Is she really a girl?" The nurse's affirmative answer caused a wave of joy and relief to join my endorphin rush.

This time a year ago my favorite portrait photo was taken. I was exhausted, but completely content. This picture captures my motherhood journey.

This year I'm even more in love with that baby girl. I'm still in awe that I have a daughter of my very own. I enjoy so much about her: the delicate mannerisms, her stubborn determination, her gorgeous scrunchy face, her love of cuddles, her patience with her brothers, her irritation with her brothers, the way she tears across the room when her daddy gets home, and ever so much more. 

I love this child.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.