Wednesday, December 30, 2015

Why Special Needs Parents Love Social Media

I've been a mom for over 12 years now. Having three uniquely diagnosed children means my brain is a jumble of all things related to special needs parenting: Haberman bottles, IEPs, FAPE, LRE, PT, OT, EI, developmental delays, cognitive delays, birth defects, rare disorders, chromosome disorders, autism umbrella diagnoses, speech therapy, and almost every specialist doctor out there between the three. I really wish I'd been keeping a list of every doctor I've visited over the last 12 years--I think I would surprise even myself. My children have certainly kept me busy, and now that things are slowing down a bit, I find that all I want to do is share my story in the hope that others will somehow benefit. It's about support, something I think special needs parents need more of, and one big, important word to me: CONNECTION.

Being a special needs parent means you often feel alone. Alone because no one really gets what you are going through. Alone because at some point you realize just how different your life really is compared to others. Who can I REALLY talk to about my life? Who would even begin to understand? Who would know what all those special needs terms mean without having to explain them? I have a handful of people like this in my real life, but I think this is why many parents like me blog, because this is what we seek: parents like us. CONNECTION. And with the magic of social media, we can reach others, in a big way, and feel connection like never before.

Honestly, though, I was never more scared than when I published my Facebook page. I had already been blogging, but mostly family read my blog. Did I really want to share my life with, potentially, the world? Am I okay with many people reading my story? It took a giant leap of faith for me to begin my page, and there are still some days that I would rather hide from the world. But I have to keep telling myself that publicly sharing is how moms like me make changes for the special needs community. We are making a better future for our children by sharing the information we have, by sharing stories about our children. We are helping to end the stigma related to disabilities because of our openness. And being open leads to connections with parents that I never would have met otherwise.

My little network of "online friends" from my page and from other pages continues to grow, and I love it. I love that I can talk to people who get it. I don't feel alone anymore. I feel confident in my story, because I know people who get it, too. These connections are what keep me going, day after day, in sharing my life as a special needs mom. And this is why I will continue to write about my children, because I am adding to a large volume of voices that will propel all special needs children into greater futures and potentials. I am not doing it to become famous. I am doing it to help someone else not feel alone in their journey. Connection is what it's all about. Thank goodness for social media, because my support group has never been larger.

And by the way, if you know what all those terms are in the first paragraph, you are already my friend.

Friday, December 18, 2015

Poetry Series: Phases of My Motherhood

Phases of My Motherhood: Fear

Tiny fingers, red sheen on her soft head, half-open eyes.
Nursing the day away, falling asleep in my arms.
Breathing her baby scent after a bath, turning my nose at diapers.
Waiting to see her first smile—did I see it?
I think so.

Reading baby books to follow milestones—why isn’t she rolling over?
Is that really a smile, or just a half grin?
Isn’t she supposed to be crawling by now?
The doctor says she will get there, don’t worry.
But I do.

She screams as we teach her to crawl, to walk.
We place little toys in her hands after we let go of her fingers.
We step away, beckoning her to come.
She cries, tears sliding down her baby cheeks, frozen in fear.
The doctor says she will be fine, she’ll catch up.
But she doesn’t.

She learns to sit, and begins flapping her arms, staring into space.
Her head shakes back and forth sporadically, making me dizzy.
I grab her arms to stop the flaps, her head to stop the spins.
She pauses but continues, stiffening her joints like electricity
Is jolting through her body.
What is wrong with my child?

The doctor now worries because she’s not walking yet.
He says she is behind.
But I don’t want to hear any more.

Phases of My Motherhood: Denial
I see her arms flapping, her head shaking, and I ignore it.
She’s saying words, naming colors and shapes, singing songs.
She’s my daughter, she’s perfect—she will grow out of it.
But in public places, there are stares.
And I want to hide from the world.

She begins physical therapy to learn to walk.
Soon my calendar fills up with appointments and therapists.
I just want to hold my child, take her to the park, and be normal.
Why does everyone think she needs so much help?
Why can’t I just believe them, too?

My fears for her grow, but I keep them sheltered in my mind.
Locked away, like a time capsule, never to be opened.
Maybe this can change her future, I think.
Maybe this can change her present, I hope.
Because presently, she is not progressing.

No more appointments, no more doctors.
I hold the key to her future, I tell them.
Go away, never come back.
Let me raise my perfect child.
Denial is a fierce emotion, until the keys don’t work.

Phases of My Motherhood: Breaking Point
Keys, so many keys, jangling on my keychain.
Why won’t they work?
Why won’t they fix her?
I force them in, I wriggle them in the locks.
But things are getting worse, and now I feel trapped.

This box I’ve created for us, it can’t be safe.
She’s biting herself now, screaming, and throwing her body down.
I’m crying every day, praying, hanging by a thread.
Who holds the key that I need?
How can I break free from this place?
Someone tells me autism, but no.
Autism isn’t where I picture my child.
She’s unique, she’s an individual.
She doesn’t fit in any one box, especially not autism.
So we sit together in this crowded, noisy space.
Doctors knock on the walls.
Family peer through the lock.
But the only way out is through me—
Through admitting that my daughter isn’t perfect.
I clutch the key, tremble as I push it into the lock.

And I open the door of the box.
I’ve had the key all along.

Phases of My Motherhood: Facing Reality
Stepping out of the box means stepping into reality.
None of my fears were kept locked away.
They were waiting for me outside that box.
They were circling around it the whole time.
And now, holding my daughter’s hand, I have to face them.

The fears begin to penetrate my mind again, like a woodpecker
Pecking his way into his eventual home.
Once settled there, the fears give way to understanding as I attack each one.
Flapping, head shaking, lack of expression, developmental delays:

Autism understood is acceptance.
It’s living outside the safebox—still with a large set of keys.
It’s admitting you don’t know what you’re doing,
But that you won’t give up, won’t stop trying your keys.
Autism is part of our reality now, and we face it together.

 Faith guides me, fears are gone.
The box is the world we live in.
Though, others might place us in a box at times.
They just need to find their own key to our world.
Everyone’s invited.

Thursday, December 17, 2015

Home Vs. Public

One word that describes me well is "homebody." I love being home. I prefer being home with my kids and spending time with them there. The stresses and worries are reduced, and my children are free to be themselves. It's a safe place for them, and for me.

But of course, cabin fever does set in (and it most likely will in the coming weeks during winter break) and we take our kids out into the world, into the public. We lose the comfort and security that home brings in order to enjoy new things with our kids. And most times, I'm in panic mode, worrying about every little thing that could go wrong, trying my best to plan ahead and avoid any tantrums or situations that will create chaos.

Who am I kidding? I have a child with autism. Nine times out of ten, something will go wrong. And nine times out of ten, I cannot predict it, even with all the years of parenting under my belt, because autism is unpredictable. And so tantrums happen, in public, and it's like I'm sharing autism with the world, yet they don't know it's autism.

At home, autism is our world and reality. We understand it, we live it. We don't judge.

In public, I have to face my child's autism, head-on. Others have to face it, too. And people will judge because they don't understand.

Just a few days ago, someone was visiting my daughter's Young Women's class in church, and noticed she was new. This kind woman approached her and asked her name. My daughter put her head down and spoke, barely above a whisper, fidgeting with her hands and rocking her body as she said it. The woman glanced at me with a confused look, and in that moment, I thought maybe I should say something about autism. Maybe I should tell her why she couldn't understand my daughter's response. But I gave into my fears of being judged or ridiculed, and my dislike for labeling my daughter, and simply told her my daughter's name. This kind of scenario happens often, and makes me want to retreat back to my safe place where my daughter knows we understand her, where she feels comfortable talking in a normal volume.

But there are times when I wonder, while I'm out in public, surrounded by a population that largely doesn't understand autism, if I should explain it or not.

Do I tell strangers about her autism, or just remain silent?

Do I want to make her stand out by saying she has autism, or do I want her to just blend in?

Do I want others to look at her differently because I tell them she has autism, or do I hide it?

Should I label her to avoid the stares and questions, or should I trust that people will ask if they feel the need to?

These are the questions that plague me. And these are the reasons why I prefer to be home, as much as possible. No explaining autism, no stares or puzzled looks from strangers. Just peace and contentment in our safe place.

But then I think, shouldn't I go out in public more? Doesn't the world deserve to understand autism better? Why should I hide my daughter in my home 90% of the time? How does that help spread awareness? I'm doing a disservice by sheltering her here.

Home versus public. Safety versus uncertainty. Understanding versus confusion. Our precious daughter versus "what's wrong with that child?"

How do you spread autism awareness while in public? Do you tell people, or keep it a secret?

Monday, December 14, 2015

My Motherhood Story: Julianna

(a revised post for another facebook page.)

My daughter, who is almost 12 now, has autism. She is afraid to swim, so she attends year-round swim lessons. Each week, the teacher asks her to jump in the deep part of the pool: “On the count of three, I want you to jump in, okay? One…two…” She pauses before three, and begins the count again. “One…two…THREE!” Enthusiastic threes aren’t enough for my child on the spectrum. Jumping into a pool means my daughter is going underwater, facing the biggest fear of her life.

Eventually she did jump in—and after resurfacing, she scrambled for the wall, screaming, no doubt traumatized, like the fear had been delivered from her head and born into her body. It broke my heart to see her this way. But this first plunge took her one step closer to feeling normal about swimming, and every plunge thereafter has purged a layer of fear, and will eventually give way to normalcy.

I have three redheaded children. My first child, a girl, was born on her due date with no known issues. Five years later, after many developmental delays, she was diagnosed with autism. My second child, a boy, was born at a healthy weight, with two large marks on his stomach. Three weeks later, he was diagnosed with mastocytosis, a rare blood disorder. My third child, a boy, was born once ounce heavier than his brother, but had trouble nursing. Three hours later, he was diagnosed with a bilateral cleft palate.

As you can see, normalcy isn’t something I deal with as a mother. But it became normal the more I learned about them. Just like my daughter, I’ve stood on the edge of my doubts as a mother, wishing I didn’t have to swim the unknown waters of my children’s diagnoses, wishing I could just have normal. I never expected to have children who had challenges, who weren’t normal in the eyes of the world. Yet here I am, with three differently diagnosed children, treading an ocean of uncertainties with a tide I have no control over, struggling to keep my head above these waters of isolation, confusion, and fear. We all stand on our own “edges of normal” for a while until we are ready to jump into the uncertain waters. For this post, I want to focus on my daughter with autism.

Before my daughter was diagnosed with autism, my mind was clouded with concerns. I wondered why she didn’t smile all the time or make good eye contact. I worried about her delayed milestones. Instead of facing these worries, I tucked each one neatly into the farthest corner of my mind, a hidden pocket in my brain, thinking that if the worries rested there, they might not amount to anything. Besides, facing these concerns might mean my cream-faced, button-nosed redhead wasn’t normal, and I certainly didn’t want that. Normal was safe and predictable, and in my comfort zone.

So I tiptoed on that edge until I was given the first push, or nudge, closer to the edge, by a neighbor who knocked on my door when my daughter was 17 months old. I invited her in, and she sat down on my scraggly thrift-store couch with a very worried look, and said, “I think your daughter has autism.”

My hidden brain pocket was ripped open in an instant. Every worry I’d had since her birth was thundering before my eyes, and soon that thunder gave way to rain. Tears, sobs, and big heaving breaths filled that tiny apartment living room. Hugs were shared, and after our goodbyes, I sat with my redhead on my lap for a good hour until the rainfall dissipated. I tried telling my brain that what my neighbor said wasn’t true. Then Google became my new best friend—sometimes it confirmed my hopes, other times, it confirmed my fears. So I said goodbye to Google and kept walking the balance beam between normal and un-normal.

Then I got my next push toward the edge, this time from my mom. She gave me a book, which I devoured and highlighted and dog-eared and margin-scribbled. Then came an official diagnosis of sensory processing disorder, and the following year, the autism diagnosis.

I stood looking out over the edge into the giant ocean of autism, and had no choice but to jump in. And while treading the choppy waters of a fresh autism diagnosis for about a year, I finally set foot on an island of self-discovery: maybe she wouldn’t be considered normal to everyone else, but she’s normal to me because she’s mine. This was going to be my new normal—I could either embrace it or be afraid.

Like my daughter’s fear of water, un-normal things can’t be normal until you face the unknown and accept it as truth, as reality, as your inevitable life. You have to jump in all the way.

So I ask you, what is normal, anyway? Who can define normal? Normal for whom, compared to what? Doesn’t what you’ve been given become normal once it’s understood and accepted? Normal is so relative. I might have teetered on the edge of normal in the beginning, because facing uncertainty is difficult. It wasn’t until I let go of my idea of normal and made the jump into that vast ocean of my fears that things became normal. And after what I’ve been through, I must say, I’m a really good swimmer now, too.

Wednesday, December 9, 2015

More Than Just a Parent: How I Feel About Special Education

Casinos are smoky, dark places—except for their ballrooms, which flaunt vaulted ceilings, ornate wallpaper, and round tables by the dozens, and provide a place for conferences to convene. A small stage with a podium, large screen, and microphone sat at one end; tables full of coffee cups and coffee pots sat at the other. Parents, teachers, advocates, lawyers, and experts flooded the room, clutching their new bags full of heavy books, personalized pens and pencils, and endless flyers from vendors. They all came to this Wright's Law training for one purpose: to help special needs children receive a better education, and so did I.

These weren’t just any individuals, they were my people. They know how I feel, they’ve walked in my shoes as a parent. They have the same worries and frustrations and concerns. What I wouldn’t give to be able to talk to each and every person in that room, to ask why they were there, to inquire about their child, to bond with them. But that’s not what today was about. Today was about being taught by a master lawyer and teacher of special education law. He travels the country doing these conferences, and no doubt makes big money doing it.

He began by telling his own struggles with dyslexia, and how he overcame them. And then he passed out a fill-in-the-blank pop quiz to see what we actually knew about special education law. I could only fill in three blanks, and realized that though I’d been helping my daughter through the school system for 8 years now, I knew very little. We were then instructed to get out our books and our signature "pen with a highlighter on the end." It was time to learn from the expert on what we could do to make sure children get the services they deserve through the school district, or IEPs (Individualized Education Plans).

And so we dove into those books, one by one, flipping our fancy writing utensil from the highlighter side to the pen side as we went, filling the margins with acronyms and short-hand dictation, and making notes inside the front cover for easy reference. He was training us on how to read these books like a lawyer, on how to think like a lawyer, so that when we attended the IEP meetings with the teachers and directors from the school districts, we would be prepared. Nothing would get past us anymore, because we had knowledge. And I’m sure many in the room were thinking, “Wow, isn’t it so nice of this man to give of his wealth of learning and expertise? I’m so glad I get to read all this stuff so I can be a better parent/advocate for my child.”

But you know what I was thinking? How silly it was that I even needed to be sitting there, trying to figure out all these laws—the fact that I even needed to think like an attorney just so my child could do well in school. Parents of regular, neuro-typical children just send their kids off to school with few cares, much like I do with my middle child. But me? No, I have to almost become a lawyer to ensure my child’s success in school. I have to know the special education laws myself to make sure the school district isn’t breaking the laws. I suddenly felt like being there didn’t make sense, that sitting in that room meant that something was gravely wrong with the special education system if all these parents needed to be so informed. Don’t schools realize that parents of special needs children have it hard enough already? Don’t they know that raising children, any children, is already a job in itself? And now I practically had to get a law degree in addition to that? A special education degree? An entirely new skill set of knowledge just to be able to raise my own child?

What if every teacher in a school district was bound to provide all necessary and vital information to every parent once a child is diagnosed with a disability? What if we knew, as parents, that we could trust, completely, that our child is getting every single service he or she deserves in order to thrive and succeed? What if we didn’t have to fight, or wonder, or study law books? What if we just got to be regular parents, and send our special needs child to school like every other child? What if all we had to do was tell our child’s teacher, “This is my child. He or she has autism (or any other type of disability).” And the teacher’s response was, “Don’t worry. We’ll handle it from here. He or she will be well taken care of. We know exactly what to do.”

I imagined a world like that, right there in that grand ballroom. It was comforting to envision a reality where my biggest worries would be what other parents might worry about from their schoolchildren: a scraped knee, an unkind word from a classmate, or a low grade on a test. None of this need-to-know all-the-meticulous-special-education-law business that was being paraded around me. It would be entirely built on trust, between parents and teachers, not long meetings and countless signatures. No fighting, no crying in IEP meetings. Just complete trust in the school system. They would do their job as teachers by providing all services available according to the laws, making sure they got the best education possible, and we would do our job as parents at home--bathing and dressing our kids, playing with them, reading with them, loving them, teaching them life skills, helping them with homework.

But then my actual reality set back in, and I remembered once again that all parents have a full-time job, special needs kids or not. And no two children are alike. This means every parent learns to parent based on the needs of the child, which proves the infamous declaration that parenting is “the hardest job in the world.” When you become a parent, you have no idea what you are getting into, because you have no idea what your child will be like. But you don’t give up, because your child is depending on you to help them reach adulthood. Education is a big part of that process.

What I do know, though, is that my experience with school, though it has been up and down over the years, has been mostly positive. Teachers have bent over backwards to help my children, and are often bound by certain laws to go any further. They are helping my children based on what they know of special education law, and SPED directors are often looking at the bottom line more than being willing to provide extra services, though many in their hearts, they would like to do more. Schools and teachers are doing their best, this I know for sure. And parents play a big part in helping services improve. Speaking up does make a difference.

My job as a parent requires a different skill set than the next, but it doesn’t mean it’s harder. It just means it’s different. Parents are also teachers, and should learn how to best teach their own children. For me, that means learning how to teach in a whole new way. For me, I need to know the special education laws and how to be an advocate, at least for now--maybe it is possible to take some of the burden off parents. For others, it might mean having to know all about diabetes, or depression, or how to discipline a challenging child. Though I sometimes wish things could be different for my parenting situation, I know it’s not going to happen any time soon. So I might as well dive into these books and make the grade—after all, I’ve now got that fancy highlighter pen. My children deserve a bright future.

Wednesday, December 2, 2015

The Shooting at Inland Regional Center: A Parent's Thoughts

I am a parent of a child with autism. Ten years ago, before I knew she was on the spectrum, she received early intervention services. Services that were crucial to her development, to her ability to learn how to walk, to learn fine motor skills, gross motor skills, to speak. Her very future relied on these services—not from a doctor's office, a neurologist, or any other specialist. No, a child can only get services like these from a regional center, and today, Inland Regional Center in San Bernardino, CA, where she has been receiving services ever since, was under attack by three shooters. And people were killed. And my heart sank.

I thought of the many case workers over the years that have spent countless hours advocating for my daughter who were placed in danger. One in particular will always be close to my heart. Though the school district diagnosed my daughter with autism, the Inland Regional Center did not, and this would have prevented her from receiving autism services that I knew she needed. Her case worker fought to get those services anyway, and won. She cared enough to do this for my child because she cared about my child's future just as much as I do. And she is thriving now, making gains, doing things I never imagined, all because of the services from the Inland Regional Center, because her case worker was on my side.

I thought of the respite care I've received through the regional center funding, and what blessings these respite workers have been to have in my home. Without them, I would be hanging by a thread. Their help has been invaluable in giving me peace and support while raising my special children.

Just 6 weeks ago, I came full circle, as I brought my 2-year-old son to the Inland Regional Center for evaluation to determine if he was on the autism spectrum. He had already been enrolled in the best 39-hour-a-month early intervention program for the last 18 months, fully funded by the center. A kind, welcoming psychologist assessed him. She played with him, she laughed with him, she spent two hours with him, and she listened to my story and my appreciation for the many services I've received from their center. I recently got a certified letter from Inland Regional Center, saying he was discharged because he had no qualifying diagnosis. He will no longer receive services from this center, but I will forever be grateful for their generosity, and to his case worker, who I pray was not harmed today.

The Inland Regional Center, and all regional centers, are the vital link in the chain of children with disabilities. They provide services that no school district or medical professional provides: they come to your homes. They sit down and listen to you. They fight for your children. They are your advocates when you are too tired to be one. They give services to your children when they become adults. They are right there with you, helping you to understand, to support, and to raise your children. To all the countless therapists and providers who have come to my home as a result of the Inland Regional Center, I say, thank you. You have made my job as a parent to special needs children more manageable, and more hopeful.

I will forever be grateful to those selfless individuals who have fought traffic to meet me in my living room, to give me comfort like no one else could. They are an integral part of my family's life--in fact, they're almost like family. I owe so much to them and to my children's development.