A small boy in a t-shirt, shorts and sneakers holds a snocone as he stands on the grass

When My Son Asked Me Why He Has Brain Damage

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If you watched my son on the playground, you’d see an average-sized 9-year-old with beautiful brown skin and a big smile. His mannerisms are a little off and his language a little strange, but for the most part, his disability is invisible.

Mateo has Fetal Alcohol syndrome. My husband and I were young and clueless when we adopted him — out to save the world with love and a Disney-themed toddler bedroom. Now, we know love doesn’t fix everything.

This has never been as clear as the day he stood, sobbing, in my kitchen seven years later, asking if he has brain damage. It’s a yucky term, but we use it so professionals understand his difficulties with following rules aren’t because he’s a “bad kid.” But it’s not a term I want my son, who’s functioning like a 4-year-old, to associate himself with.

It always happens that kids throw these parenting bombs at us when we least expect it. So there I was, mouth hanging open, food burning on the stove top, fumbling for the right words. How do you tell an 8-year-old his brain will never work like his younger sister’s? How do you tell him he’ll always be slower, less coordinated than his peers, and he’ll probably need therapy and medication his whole life?

“Why did my brain get damaged, Mom?” he asked through tears. “Why am I the only one in my class who’s stupid?”

He looked at me, pleading for answers that made sense, desperate for his mommy to fix things, to tell him it’ll be OK, to heal his boo-boos with a kiss. But there are some boo-boos I can’t fix.

I’d like to think I said all the right words that night, and that any number of professionals would give me a round of applause for it, but I don’t know if that’s true. I’m not a believer in sugarcoating things for my kids.

“Can we fix it?” he asked. “Can I get a new brain?”

Trying to hold back my own tears, I hugged him and said, “All we can do is try our best and keep going.”

That’s as close to a motto as we get as parents on this wild, uncharted journey. We don’t know what the future holds or how much he can learn and grow and develop. But we’ll always try our best, and we’ll keep going, one day at a time.

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Why I'm Almost Proud to Tell the Story of My Child Kicking Her Classmate

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My daughter, Sydney, got in the van as she does every day after school, but this day was different.

She didn’t start talking a mile a minute, asking me where I’d been and what I’d done. She didn’t loudly share with me who she played with at recess or how awful the boys in her classroom behave. She didn’t ask me what I was making for supper or complain about the school lunch. She didn’t drop her backpack on the floor and flop down into her booster seat in the back. She didn’t wrestle with the seatbelt and complain about how hard it was to get fastened. She didn’t ask me if I’d brought her a snack and whine about how hungry she was.

Syd on fence She instead eased her backpack off her back, sat it down gently and came to the center of the van to stand beside my right shoulder. She wouldn’t look at my face. She began to talk softly in partial thoughts and broken sentences. I could tell she had something to tell me that was overwhelming, something so dreadful she couldn’t bring herself to use the words. I turned around to face her and said, “I cannot understand what is wrong until you tell me. So far, I know that someone is going to email me, but that’s all I’ve got. It would be better if you can tell me yourself before I get the email.”

She began to cry huge tears that ran right down her cheeks and dropped to the floor. I pulled her close and told her that it would be OK. Whatever she’d done could be fixed. She choked out the name of a student in her class and said they’d argued. Sydney had kicked her friend — hard.

I looked down at her feet. She had on cowboy boots. I asked all the questions you would expect. “Is she OK? Did you apologize? Did you have to see the principal? What is your punishment?” All Sydney could manage was, “I’m sorry. I’m sorry. I’ll never do it again. I am sorry.” I turned off the car. We would be late to pick up her brother, but sometimes the world has to stop spinning for a minute so a little girl’s hurt can be cared for. As Sydney calmed and we talked, I realized she saw this as a two-fold problem. She was genuinely upset that she had been naughty, but also she knew she wouldn’t be able to relax until it was resolved. I’ve seen kids cry many times in the last 26 years of parenting. I know the difference between the tears of a child who’s truly remorseful and a child who’s only sorry they got caught in mischief.

Sydney and I walked back into the school building, her squeezing my right arm as tightly as she could. The hallway seemed so much longer than it usually does as we walked to her classroom. She sniffed and wiped at her face the whole way. We found Sydney’s teacher in the classroom. She’s a compassionate, kind, reasonable woman and easy to talk with. We three were able to put our heads together and decide that it would be appropriate for Sydney to write an apology letter to her classmate. As we left I could see the relief on my little girl’s face. Everything was going to be OK. When we got home she sat and wrote that letter in her best handwriting and asked for me to check it. She didn’t argue or leave it laying on the counter for me to put in her backpack.

Sydney came to me often throughout the evening to tell me how sorry she was for kicking her friend. Each time, I told her everyone makes mistakes and she had done the right thing by apologizing. At one point Sydney told her older sister what she’d done and sobbed again.

You may be wondering why I find this event in the life of my child so significant. Why is this noteworthy at all? Don’t children sometimes fight? Don’t children sometimes make poor choices? Don’t children sometimes become emotional? Children do all of these things — typically developing children as well as children with disabilities.

Sydney in pink hat The thing is… Sydney is supposed to be kicking her classmates daily, but she doesn’t. Sydney is not supposed to be able to show regret or remorse. But she can.

Some of the books I’ve read say children with Fetal Alcohol Syndrome (FAS) sit in the principal’s office more than they sit in the classroom. Some of the parents in support groups say their kids with FAS kick, hit, spit, bite, scream, throw things and hurt others daily without regret. Some of the parents who blog about their children with FAS tell of dangerous, violent behaviors. As hard as Sydney is to deal with each morning before her ADHD medications kick in and as difficult as she is to teach, she’s seldom malicious. She’s bossy and a little moody, as are most fourth grade girls. She’s silly and giggly and wiggly and loud often, but she’s sweet and loving. How did I get so lucky? How did I adopt a kid — whose brain was damaged by alcohol — who can still be gentle and kind the majority of the time? How did I get the kid  — whose brain was damaged by alcohol  — who can still feel remorse when she hurts someone? I’m blessed.

The incident qualified something for me yesterday. I often find myself advocating and arguing that Sydney shouldn’t be held to the same standard as her peers. As unfair as it is to hold Sydney accountable for many of her actions due to her brain damage and limited impulse control, it’s also unfair to give up on her ability to develop some of the characteristics that others tell me she’s not supposed to have. I see some great potential and it’s growing. I must maintain my caution so I don’t ask Sydney to do the impossible, all the while challenging her to be all she can be.

It would seem I’m almost proud when I’m telling the story of my child kicking another child. As sorry as I am that my child caused another child’s pain, I’m proud of my little girl for many other reasons. I’m delighted she has only lost the limited amount of self-control she was allotted and kicked a peer one time. I’m elated she was tenderhearted enough to care that she had done it. I’m pleased she took responsibility and was brave enough to face whatever consequences lay ahead. I’m proud she willingly wrote an apology. I’m grateful she loves me and trusted I would help her with her problem. I’m overjoyed that she is mine.

This post originally appeared on Quirks and Chaos.

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Why I Believe Only Special People Parent Special Needs Children

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Recently, a longtime friend reached out to me to let me know she was expecting a Sensory Processing Disorder diagnosis for her kiddo. She was feeling all of the things you feel when you are told your child is different, and she was wondering if I had any suggestions or helpful tips about how to begin their journey.

We chatted for a while, and it turned out she was already aware of several things that would be helpful for her child. (I wasn’t surprised; she’d always been a smart, tough go-getter.) So I put in my two cents, wished her luck and asked her to keep me posted.

The conversation stayed on my mind for the remainder of the day. I thought of the beginning of our journey. In my mind, I went over all the things we’d learned, doctors we’d seen, therapy we’d done, changes we’d made in our lives and lifestyles… and it was the first time I’d stepped away and looked at it from a distance, rather than just feeling it from the epicenter. It was the first time I’d realized just how far we have come.

I’m proud of us — not just of Lucy, who has done an enormous amount of work, but of our entire family. Each of us has had to sacrifice and grow and love each other better than we might have if we hadn’t been on this crazy ride together. It was one of those shifts in perspective that all of a sudden illuminates a reality you hadn’t considered before. It was a gift.

Then a few weeks ago I read an essay by the mother of a child with special needs. The essay described her irritation when people told her that, “God only gives special kids to special people.”  She knew those folks were saying it with only the best of intentions, but believes that kids with special needs can be born to anyone, and some of those people go on to do horrible things to their children. I enjoyed the essay and the ultimate message, but something bothered me about it, and I couldn’t put my finger on exactly what it was.  I thought it over for several days, and then I had another lightbulb moment.

Because I’d said something along the lines of, “God only gives special kids to special people” to my friend in our conversation when she’d reached out to me days before. Was I a jerk? I am the parent of a child with special needs; I should know these things. Am I bothering other parents when I say that? It’d never bothered me when someone said similar words — but why not?

I thought again of our beginning — when we were searching for answers to questions we didn’t even know how to ask, before we had our diagnoses and we knew things were off. I thought about after — getting our diagnoses and facing the reality that we had a lot of work ahead of us, with uncertain outcomes. So many questions. Not the least of which were the soul-wrenchers: “Why her?” “Why us?” I wanted to feel that there was some purpose to it all and that it wasn’t some random twist of fate — that maybe there was something special about me and her — and me and her together.

Now, I have to admit that while I consider myself a spiritual person, I will rarely, if ever, bring God into a conversation. I’m not one for the white beard and the throne and the meting out of judgment. And I run in a pretty secular crowd, so no one has ever said that exact thing to me before because that’s not the way we speak.  But I have said that it takes a special person to parent a special child. And I believe that. It gave me comfort when I was looking for answers years ago, and it gives me comfort now during the hard times.

I think communicating it that way conveys the good intention with better words. It’s just a little shift in what can be said, but it means something different. True, anyone can have a child with special needs but instead of “have,” which is passive, “parent” can be active. Not a noun, but a verb. A doing. And if someone does a horrible thing to a child, that is not “parenting.”  That is simply criminal.

Truly parenting a child with special needs absolutely requires a special person. Someone who has strength, patience, resilience, persistence and deep wells of love for the unique person whose care they’ve been given.

After talking to my friend, I realize that she’s exactly that kind of special. She’s an intelligent, fierce mama who will be the absolute best advocate for her child. After looking back at our long, long road, I realize I’m that kind of special, too. Our whole family is that kind of special, and there’s nothing passive about it. We choose it and act on it every day. It doesn’t mean we’re perfect or that we get it all right all the time, but it means we’re purposefully trying hard and doing well by our special needs kiddos. Thinking it over put me at peace with my words.

So if you’re like me, and you want to give some words of comfort, particularly to someone who is just starting on their journey, I think it’s OK to let them know you know it takes a special person to actively parent a special child, regardless of how that child came to them. God, genetics, adoption, whatever. Because it does take somebody special. I don’t think I’ll ever be convinced otherwise. And you know what? If you chose to read this today, I’m willing to bet you’re pretty special, too.

lucy and merry

This post originally appeared on Mom in Uncharted Waters.

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When a Cashier Reminded Me My Son Has Down Syndrome

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Sometimes I forget that our son has Down syndrome. It’s easy to be distracted by his 2-year-old tantrums, his mischievous smile and go-getter attitude. Gabe is kindhearted but stubborn. He immediately runs to check on his sister when she’s having a dramatic, I’m-4-and-the-world-is-over meltdown. He will climb onto your lap randomly and stretch his little fingers up to stroke your cheek, just to say, “I love you.”

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He also destroys things. Opens drawers, pulls things out, throws them on floor. When you confront him, he ducks his head and looks up from under his eyebrows with a sort of sorry smirk. He helps pick up, sometimes, or wanders off to destroy something else. He loves music; he’ll start to dance the second he hears it. He absolutely cannot resist participating in a round of “Itsy Bitsy” or “Twinkle Twinkle,” no matter how upset he may have been seconds before. Gabe can make music from anything, even the fireworks during the Fourth of July celebration.

Sometimes I forget, because Gabe is just that — Gabe. When I look at him I don’t see Down syndrome, I see my son, Abi’s brother — a sweet, willful, determined little boy.

Sometimes I forget, and that makes it even harder when someone reminds me in a not so kind way.

little boy with pot on his head Like the cashier who gave me sad eyes and spit poison in a whisper, “I bet you wish you had known before he came out. You know they have a test for that now…”

Shock, horror, hurt and fury coursed through my body. I considered jerking her over the register and beating her senseless. I looked her up and down; I could take her.

Instead I used wit. I smiled a crazy lady smile. “I know right?! It’s so much harder to get rid of them once they come out. Believe me I’ve tried…” Jackpot! Her mouth dropped open, and she stared at me in shock. I leaned over the register and whispered to her, “What you’re saying is that it’s OK for me to kill him while he’s inside but not outside? In my book there isn’t a difference. For the record, we knew everything about him during my pregnancy. He’s our son now, and he was our son then. There is no way in hell that I would let any harm come to either of my children, including during the time that they’re so ridiculously considered disposable.”

I’d forgotten that sometimes other people don’t immediately see Gabe, they see a “downs kid.” They see poor parents and a burdened sister. I sometimes forget until I glance up and see the pity in their eye or hear the ignorant comments in not-so-hushed whispers.

I sometimes forget that it’s not their fault. They just don’t know.

Baby boy seated in a car seat

I sometimes forget that was me once too. What I knew about Down syndrome before we had Gabe was what I’d learned from my nursing text books. It was only enough to leave me sobbing hysterically and envisioning a listless, immobile, incapable child.

Because I sometimes forget why months like October are so important to me. It gives our community a chance to spread awareness, to educate the public, to debunk the myths that are out there and show our children in a different light. It gives us a chance to move forward from just awareness to acceptance, so when we’re out in public and we are so taken by our children that we forget, that we aren’t reminded and shocked by the ignorance of others.

Sometimes it’s easy to forget that our kids have Down syndrome. To us they’re just Gabe or AJ or Gavin or Max or Maddie. And that’s how it should be and will be if we continue to bring awareness and fight for acceptance –not just in October but every day of the year.

This post originally appeared on Hand Me Downs.

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Dear Younger Me, Here’s What Happened to Your Son Who Didn’t Speak Until He Was Nearly 4

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Every year I like to post something for my family and friends, to share what I’m feeling inside as we raise our son with autism and our daughter, who was diagnosed with ADHD and severe OCD. The one thing that resonates each year is that I’m lucky to be on this road. It’s paved with so many stories and love from others. Here’s this year’s letter that I wrote to my younger self…

Dear Past Karen,

Greetings from age 48. I bet you’re sitting on the floor of the living room right now folding laundry. Am I right? I can see you now. Jake is playing cars in his room, and Julia is watching an Elmo video with you. I figured you have a few minutes before the next therapist arrives for Jake’s speech session. I know the autism diagnosis hit you hard last year. I’m writing today to tell you about how things turned out and to let you know that most, if not all, of your prayers have indeed been answered.

In just a few months, Jake will start school at a place called Variety Pre-School. He will be placed in a class with other children on the spectrum. I know you’re going to be super nervous about letting him go, but trust me, it will be the best thing that ever happens to him developmentally. He starts to speak in sentences after eight months. He’ll stay at Variety for kindergarten, which turns out to be the best decision you and Ernie make educationally because it gives Jake that extra little push he’ll need for Central Boulevard Elementary. That’s right, both of your kids will attend the same elementary school as you and Ernie did.

Jake starts CBS in first grade and blossoms. He develops an incredibly shiny personality and is crazy about school. He starts to play school in the basement den every day. Your mom helps by setting up a classroom at her house too! Thank God for Grandma and Grandpa. They’ve pulled you through your darkest days since autism knocked on your door. Before you know it, Jake will graduate from CBS and you will be wondering why you ever cried yourself to sleep every night for two years and sometimes refused to leave the house or answer the phone. You woke up one day and started to give back at Variety. You join the PTA and start taking on more and more projects that connect you to school.

By the time JFK Middle School comes along, you wonder how you ever survived without some of your friends and their families. You realize that autism is a blessing rather than a burden. I won’t lie; those days where you feel cold and lonely do return from time to time, but they no longer control you. You control them by remembering that Jake needs you and Ernie to be strong for him and his future.

unnamed (20) Jake is now a sophomore at BHS and is the same age you were when you met Ernie. He’s a typical teen complete with worries about what his clothes and hair look like or who will talk to him at lunch. Does he still have rough days? Sure he does, but you’ve learned so much from the doctors you met throughout the years that you learn to get though these rough patches. Ready for this? Jake plays on a basketball team and is a Boy Scout. He volunteers at the District’s Summer Special Ed program as a counselor. The staff says the kids love him! This is the boy who never spoke a word until he was nearly 4 years old.

Julia has blossomed into a 13-year-old lady right before your eyes. True, she’s had her challenges, but she’s a treat. You love to shop with her and take long car trips so you can chat about every little thing. She and Jake will fight like cats and dogs, but they love each other more than you will ever know. Ernie? He’s a miracle on earth who literally picked you up and dragged you through each day. I seriously doubt you would have made it to where you are without him.

I’ll let you get back to the laundry. Elmo is almost over and you need to get Julia a snack before the speech teacher arrives. Just remember, life is good my friend. You’re blessed with so many gifts. Autism can never take them away from you.

Just thank autism for helping you to realize how special life really is.

Love,

Karen

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When My Son With Autism Locked Me Out of the House

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[Writer’s note: This is one of the first full essays I wrote about my kid. It’s an old story from ten years back now and is still one of my favorite memories.]

Standing on my back patio, I watch my 5-year-old son through the sliding glass door. He bounces around the kitchen on his large blue exercise ball, happily unaware that he’s just locked his mother out of the house.

boy sitting on ball

 He didn’t mean to lock me out. I stepped out — just for a moment — to throw something away, and I left the door open. After I went around the corner of the house, my son simply returned the door to its normal state: closed, with the latch pointed down. That’s how the handle always looks from the inside. Like many other autistic people, my child exhibits a keen awareness of his surroundings and tends to fix things he deems out of place. Lights on that should be off, books rearranged on shelves, doors that must be closed and latches returned to their down and locked positions.

“Unlock the door, hon,” I say, shaking the handle. He rolls his ball over to the door and presses his palms against the glass. He grins at me and sits back down on his ball. I instruct him: “Pull up,” and mime lifting the latch. He slides off the ball and copies my hand motions in the air, his fingers hovering inches from the handle.

“OPEN DOOR,” I demand, failing in my attempt to keep the growing worry out of my voice. My son laughs and repeats, “Open door!” But he doesn’t understand.

It all comes down to this — all the hours of behavioral and speech therapy, doctors’ appointments, IEP meetings and filing cabinets full of data sheets and treatment goals. If my son founders on a simple instruction to unlock the door, what does it matter if he knows his colors, his shapes, if he can recite the alphabet forwards and backwards? What does it matter if he expands his limited verbal ability to place “I want” before a request for juice or a cookie if he fails to comprehend my words when danger looms?

I run across the street to my neighbor’s house to call my sister-in-law, the only person with a spare key since my husband is out of town. Her phone goes to voicemail. I race back home, convinced my son is either upset by my absence or getting himself into some kind of trouble. I find him perfectly content in the air-conditioned house, bouncing on his ball near the kitchen table, taking bites of his lunch. Dear God, please don’t choke.

I go back to my neighbor’s house to call a locksmith, cursing myself for not hiding a key outside. The locksmith estimates his arrival at 20 minutes. How many things can go wrong in 20 minutes?

I return to my patio to wait where I can watch my kid behind glass, trying every so often to get him to let me in. From my isolated vantage point, the newly exposed hazards of my once-child-safe kitchen mock me. I begin to strategize. Which window will I break if he grabs that sharp knife off the counter or if he climbs up on the still-warm stove? Can I throw this metal patio chair hard enough to break the glass if he falls off that damned ball and cracks his head on the hard tile floor? Oblivious to the threats that surround him, my son laughs and bounces and taps on the glass between us.

Just as I reassure myself that at least I can keep an eye on him, my kid leaves the room. He runs into my bedroom where, of course, the window shades block my view. I cannot see him, but I hear him jumping on the bed, a favorite pastime that I instantly redefine as reckless. He yells, “Jumponthebed!”— one of the rare times he calls for me to play. I stand helpless to respond.

Then it happens. My son reappears, running into the kitchen and over to me at the door. He pulls on the handle, notices the latch and — without hesitation — flips it up and slides the door open. I’m stunned by the speed at which my dilemma evaporates. My kid, in turn, looks bewildered by his mother’s enthusiastic and borderline hysterical response. I cry and hug and sigh and he just smiles, as if to say: It’s about time, Mom, what were you doing outside for so long?

It is not always about ability. More often it’s about motivation. My child could easily learn how to unlock the door; he just needed a reason. People with autism spectrum disorders sometimes find it difficult to see the world from another’s perspective — my need to get inside, to get past that locked door, didn’t concern my son. Until it became his need.

Years later, this experience still shapes my interactions with my child. Of course, we moved the goal of teaching the instruction “unlock” to the top of the priority list (and yes, we now hide a spare key). But, the most important thing I can do is to give my son ample reason and motivation to use and strengthen his abilities; to discover what will entice him to open the doors that stand between us, waiting to be unlocked.

This post originally appeared on Stay Quirky, My Friends.

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