Tuesday, September 29, 2015

When My Neighbor Told Me My Daughter Has Autism

Julianna's first day of special-day preschool after the school districts confirmed she had developmental delays. A year later, it would be a diagnosis of autism.

It was the year 2005. I was a young mom, living in on-campus student housing, and my husband was about to graduate. The day started like any other. I was home with my little redhead of 17 months. Because she was my first child, I had all my time to give her, so I would read her books, teach her colors and shapes, and do my best to help her learn. I had no other children of my own to compare her to, but there were plenty of toddlers in the apartment complex. To me, she seemed fine, happy, and content, except for one big thing: she wasn't walking yet, and I planned to bring this up at her 18-month checkup. I didn't feel the need to be concerned--after all, in my "What to Expect" book, it said children should be walking at the latest by 18 months old, so she still had time, I thought, and we practiced taking steps every day. But I still had some doubts. Why did she seem scared to walk, I wondered? And why did she like to shake her head, and stare at ceiling fans, and flap her arms, and put everything in her mouth? These questions I could not answer, but didn't think they meant a diagnosis.

I got a knock at the door. Not uncommon in this close-knit community. It was my new neighbor who lived below me. We hadn't talked very much yet, but I would see her at church, and say hello. Her face showed concern and worry, and she simply said, "I feel like I need to tell you something."

I invited her in to sit down on my thrift-store couch. She seemed a little hesitant to speak, and I wondered why. Though I can't remember her exact words, I think it went something like this:

"I've noticed some of the behaviors your daughter displays at church. [pause...] I think she has autism."

Autism. What was autism? In the year 2005, it wasn't talked about as much, but flipping through channels, I had overheard things about it, and from what I remembered, autism did not mean something good. My voice began to shake, panic began to settle inside my chest, and I asked, holding back tears, "Why do you think that?"

She continued, "Well, I've noticed that she likes to shake her head a lot, and flap her arms. Those are symptoms of autism. I work at an early intervention preschool with children who have autism."

So those little behaviors that I would try to get her to stop doing, that she sometimes seemed obsessed with doing, actually did indicate something. But autism? Now images and past knowledge was creeping into my brain, causing even more panic. Wait, children with autism couldn't talk! They needed help with life skills, and help in school, help socializing! This wasn't my daughter! She knew her colors and shapes, and could sing songs with me!

I replied, "But she can talk! I thought children with autism couldn't even speak. And she seems to play okay with other kids."

She told me some kids with autism are able to speak, but that there are certain red flags to look for, and Julianna had some of them.

This is when I couldn't hold back the tears. The next thought to enter my mind was, "Did I cause this? What did I do wrong? Did I ignore her too much as an infant? I was busy with college classes. Maybe it's my fault."

So I asked her, the tears spilling out now, "Was it something I did wrong as a mother?"

She began patting my back gently, and said, "No, it's nothing you did. This is not your fault."

And for the next few minutes, I wept on that couch, my neighbor still sitting next to me, while my precious daughter was on the floor playing. I just cried, for I don't know how long. She let me cry, as I was overcome with emotions of fear, worry, and despair. After I regained some composure, she gave me a hug, a long hug, and she said goodbye. I wonder if she cried, too.

I closed the door, and again looked at my little girl. Autism? This can't be true. Just 15 minutes ago, I felt like things were okay. I ran to her, held her on my lap, and cried again, for probably an hour. I cried thinking about what her future might be like, if she'd ever learn to read or be able to go to a normal school, if she'd ever have friends or get married, if she'd love me like other children could.

Just hearing one word, autism, completely changed my life. I didn't want to believe it. I began researching everything I could find online to prove otherwise. I wanted proof that she didn't have it, so I wouldn't have to worry anymore. So I'd find a website that listed autistic traits, and do the checklist, and be relieved because she didn't fit the criteria. I did this for days, trying to put this thought out of my mind. And I somehow convinced myself that she didn't have autism, for another year and a half, until I couldn't deny it any longer.

What my neighbor did was probably the bravest thing she could have done. Telling a parent that his or her child has autism has to be one of the hardest things to do. I'm sure she agonized over whether to do it, but in the end, she knew that because of her background and education, she had a duty to inform me. In that moment, I was upset, even angry, but looking back, I'm so glad she told me, because we moved away just two months later. She helped me to see my daughter in a new light, though it took a while for me to accept it.

Some might think that telling this to a parent is not appropriate. But I think she saved my daughter, and for that, I will be forever grateful.


Tuesday, September 22, 2015

Why Patience is Essential to Raising Special Needs Children

Perhaps the first attribute I discovered that I lacked after become a mother was patience. Raising a special needs child means waiting, a long time, to see any progress. And at the same time, it means learning to control your anger or frustration, trusting that things will get better. Though I am still learning how to be patient, I wanted to share some ways that I have begun developing this crucial characteristic:

Realize that progress will not happen overnight.

Over the years, I have delved into many different therapies for my daughter on the autism spectrum. Vision therapy was one that intrigued me about 5 years ago, and though it was costly, and very time intensive, I went for it anyway. I would take her out there, the doctor would show us what we needed to do, and send us home with a packet full of stuff to work on before the next week. So we'd try, really hard, to incorporate this therapy into the others she was doing, and after a few months of not really seeing any progress, and feeling defeated by my inability to be dedicated to this home program, we quit. I never saw the progress that could have resulted because in addition to giving up, I also had the attitude of, "This isn't going to do anything for her. Why am I wasting my time?" I never gave it enough time to show results. I wanted the progress to be quicker, and I wasn't willing to put in the time to see it. So I threw in the towel.

Raising special needs children is a process, a commitment. You will not see amazing things happen right away. It's not like curing your child of a common illness where you know the end will come. For special children, the end is indefinite, undetermined. And because of this, you will feel weighed down by lots of behaviors and overwhelmed by lots of therapy appointments. Just do the ones you think will help your child (and you will know, I promise), and be dedicated to them, for the long haul. You will be able to look back on the many years of speech or occupational or physical therapy and see what a difference it has made. If you give up, you will never know how far they could have gone. Be patient, keep going, and don't throw in the towel.

Don't compare your child to others.

This is very easy to do, even now that my daughter is almost 12. One skill that we've been working on for years now is swimming. She is still deathly afraid of swimming in a deep pool, and because swimming isn't typically something you can practice all year, she loses the progress she makes each summer and it feels like we are starting over. We felt this again as we started swim lessons a few weeks ago. And I have to admit, looking out at all the kids swimming independently in their group classes, and then seeing my daughter with her private teacher, still struggling to just put her face in the water, was a little disheartening. But I tried to focus on the progress she made during those two weeks and not even care what others were doing. After all, she's only going to go as far as she is comfortable doing--I can't force progress--it's going to happen naturally. And for her, she did hard things. But if I were to compare her to the other, much younger children, I would always feel defeated.

As parents, we want to be proud of our children. We want to celebrate the milestones and achievements they make. But with a special needs child, most of those milestones either don't exist or come much later. This can rob parents of the joy and pride they feel in raising children. But if we watch patiently, and carefully, we will be able to see the progress of our child, just our child. And really, that's all that matters. You will never be a happy parent if you are comparing your special needs child to other children, or even other special needs children, for that matter. Each child is born with a unique potential, and as parents, all we have to worry about is helping them get there.

It means you will have to make lots of sacrifices.

If I were to add up the many hours I've spent on the phone advocating for my daughter, or writing emails or letters for IEP meetings, or driving her to different therapies, the number would be staggering. Just when I thought we'd gotten through one tough hurdle, whether it be for school or a medical issue, and we could finally take a breath, another one would pop up. And this pattern has continued and always will, because my daughter will always have needs, and I can't give up on being a parent. She is depending on me to help her achieve, and I am helping her become as independent as she can be. I have never regretted the many countless hours I've spent on her behalf, because she is worth it. Now this doesn't mean I don't make time for myself, because that is important. And if I don't get it, I will most definitely lose my patience more during the stressful times. But it means that if there's a problem, I am willing to sacrifice whatever time, hobbies, interests, or pursuits in order to solve it. Nothing is more important than that.

No one really likes the word sacrifice, but being a parent is all about it. And because special needs children need lots of extra help, parents will have to sacrifice their time and interests in raising them. Ezra Taft Benson said, "We love what we sacrifice for, and we sacrifice for what we love." We love our children, regardless of their challenges. We are willing to do anything to help reach their goals and succeed as much as possible. It all comes from love--we do it without second-guessing because we love our children.

When you find out your child has a diagnosis or disability, there are two paths you can take: the better path, or the bitter path. You might travel down the better path for a while, feeling confident in your abilities, and suddenly find yourself feeling overwhelmed by it all, and start trudging down the bitter path. I have been down both, and found that the bitter path is much harder to get off of. Once you are trapped in bitterness, it's hard to go back to that "better" person. I know that raising special children is always challenging, but challenges really are to help us discover how strong we are. Staying on the better path seems easy in the beginning, but as the years go by, you start to feel bitter, because you feel like maybe all this work and effort isn't worth it. What it comes down to is your patience is gone, your ability to endure. And so you have to dig deep, to find that strength again, so you can keep going.

Raising special needs children has been an adventure, a blessing in disguise. And I will keep moving along, patiently, because of the love I feel for my children, and the love they have for me.

Sunday, September 20, 2015

A Poem: "In Your Shoes"

To go along with the meme I shared earlier this week, here is a poem, which I hope to expand into a short story or book, as soon as I can!

In Your Shoes

What I wouldn't give for just a single day
To walk inside your shoes, and see the world your way

What would I see, through your blue eyes?
Fluorescent lights upon a ceiling?
Or a sight so very painful
That it sends my vision reeling?

What would I hear, through your two ears?
An ambulance, with sirens blaring?
Or a sound so excruciating
That it feels like my eardrums are tearing?

What would I taste, through your sweet mouth?
Chicken dinner, mashed potatoes, and some beans?
Or textures so appalling
That they make me want to scream?

What would I smell, through your cute nose?
A bar of fragrant, scented soap?
Or an odor so repulsive
It makes my insides start to choke?

What would I feel, with your soft skin?
A gentle massage inside the shower?
Or a thousand tiny needles
Piercing through my skin with power?

What would I feel, during a meltdown?
That I'm fed up, can't take anymore?
Or that my senses are on overload
Penetrating my very core?

And when people talk to me, and I can't look them in the eyes,
And when people talk, and I just listen, never to reply,
Will they think I don't have manners, or common courtesy?
Or will they know that socializing's hard, especially for me.

But if they had a chance to walk inside your shoes, as I have done,
They'd know that living with autism is a daily battle to be won.

If I could, I'd gladly take your anxieties away
And allow you to live peacefully for more than just a day.
But for now, I'll try real hard to see things as you do,
And to walk beside you, boldly, proudly, in your shoes.

Kera Washburn

Saturday, September 12, 2015

Is There Such Thing As False Hope?

When a child is born, many hopes the parents have for their child come right along with it: learning to walk, talk, go to school, learning to read and write, to make friends, graduate, possibly go to college, marry a wonderful person, and maybe have the blessing of children. You can map out your child's life, knowing full well it's largely your job to help them get there, but you are willing to do it, because, though raising a child is a sacrifice, it's also a rewarding experience.

But suppose you were told, just a few years after your child's birth, that something wasn't right. Suppose you start noticing little things that alarm you, that spark your mother's intuition. Suppose your child is diagnosed with autism, and the doctor can't even tell you what your child will be able to accomplish. Suddenly that map of hopes shrinks down to just a few: learn to walk, TALK???, go to school, LEARN TO READ AND WRITE??? MAKE FRIENDS??? GRADUATE??? COLLEGE??? With one word, autism, you have absolutely no idea what the future holds for your child.

So now what? Do I raise this child assuming the items with big question marks are OUT of the question? Or do I raise my child, treating the question marks as they are, just questions, unanswered, but answered actually by how much effort and dedication I put into this now flipped-upside-down role as a parent?

Well, for me, I choose the latter. My daughter is high-functioning. I still have no idea if she will reach a 4th grade reading level, yet I had no idea if she would ever even learn to read, and she did. I have no idea if she will learn to write an English paper like her Mom and Dad, yet she learned to write and spell, and is improving all the time. I have no idea if she will make real, life-long friends, yet she still values and understands the idea of friendship. I have no idea if she will graduate or go to college, yet here she is, in 5th grade, doing better than she ever has in school. And, I have no idea if she will marry and have children, yet there is a special boy with autism who has already claimed her, and planning their wedding and future together.

Children with autism have a map that is more like a connect-the-dots, or fill in the blanks. We jump from milestone to setback, accomplishment to failure, but we don't give up hope. Even if at the time, a point on the map seems like a false hope, or even impossible, we move forward, believing that what they achieve is not just what we help them do, but how much we help them believe in themselves. If you are just starting out on the autism journey with your child, don't throw away your map. Leave it blank, and be ready for the ride of your life.

Friday, September 4, 2015

Taking the Plunge

Parenting special needs children reminds me of climbing a steep mountain. Standing at the bottom, you feel quite small, overwhelmed, lost, and scared. You know there is no way around this mountain. The only way to reach the destination for your child is by climbing step by step up that mountain. But sometimes deciding to take that first step is the hardest one.

I remember standing at the bottom of my mountain, my journey, 10 years ago. I remember exactly how I felt when a neighbor told me she thought my daughter had autism; how I cried and cried, holding my daughter in my arms, completely scared of what to do next. How I mentioned this to our pediatrician soon after, and how he referred me to an early intervention class. I remember walking into that room, seeing the needs of the other children, and only staying 5 minutes because I was overcome by the fear of what my daughter's future might hold, of what my life might now become. I wasn't ready to take my first step on the mountain as her parent. In the following months, I turned away therapists that were coming to our home, and discharged her from crucial services because I was in such denial that anything could be wrong. I knew there was a mountain looming above me, but at the time, I thought I could go around it, because nothing was wrong with my perfect child.

I finally took that first step when I heard about sensory processing disorder, and knowing deep in my heart that this had to be her diagnosis. I willingly called an occupational therapist for an evaluation, and went to another one after that, because the first one didn't seem right for my daughter. I was starting to develop that intuition that all parents of special needs children have, where it's like a voice is guiding you to all the right doctors and therapists, where one doctor leads to another, and another.  Once I gained knowledge about her diagnosis, and how to treat it, I began racing up that mountain, as fast as I could, gaining so much knowledge and support that nothing could stop me now. I thought that once I reached the top, everything would be better. The closer I got, the faster I ran. That beautiful view was coming, the end of my struggles as a parent. She's going to be okay, I can do this.

But then she wasn't okay when I reached the top. She still needed more help.

Being a special needs parent isn't just climbing one mountain, I realized. Once you climb one, it only brings you to the edge of a steep cliff, where you can celebrate briefly this victory, but then the only way out is down, plunging into the depths of the unknown water below. You look down, thinking how can this be? I thought we'd made it, finally! I've already come so far with my child!  How can there still be more to do? You then see another mountain ahead, past the water, and so you jump down, treading mysterious waters, searching for answers again, until you reach the next mountain to climb.

Figuring out school placement for my daughter has been an uphill battle, full of plunges along the way. Preschool days were fun and easy, but once elementary school began, I jumped into those waters again until I felt good about a certain placement. So we tried special day class, but it wasn't long before she would tell me she didn't feel safe with kids who had unexpected behaviors. Back in the water we went, swimming until we found another solution. Resource class, small group with partial mainstreaming. It worked! She made progress exponentially that year! We were celebrating on the top of the mountain!

Until suddenly, we were pushed over the cliff into the water again, because the school district decided to try a "full inclusion" program without telling any parents. She had no choice but to attend a regular class by herself with some support during the day. I saw her confidence and cheerfulness crumble before my eyes and I knew it wasn't working. Without any options at that point, as far as I knew, I told the school district I wanted to try homeschool, halfway through the year. Talk about taking a big leap. It started working! She was making progress! But then I became pregnant, and I knew we needed to take another path for her so I could focus on the new baby when the time came.

I was a pregnant mother, drowning in the water by this point, having no idea what to do. It wasn't until a wonderful teacher listened to what I wanted for my daughter: a one-on-one aide, all day, in a regular classroom. I was told it would be hard to get, but she helped me, she pulled me out of the water to dry ground until we got to that IEP meeting near the top of the mountain. We got the aide, just before my baby was born, and she has been with my daughter for 3 years now. We celebrated, and have been celebrating ever since. But I know I'll be taking the plunge soon, because next is middle school. I'm ready to do it, eyes wide open.

You can't be a special needs parents without taking plunges, without immersing yourself in the experience. You have to put your whole self into it, eyes wide open, not fearing anything. And as you do this, you will also realize that your child for whom you have been searching for answers to all your questions, fears, and worries, was climbing that mountain right along side you the whole time. This journey is just as frightening at times for our children, because we are asking our them to go outside their comfort zones and push a little harder than they really want to. We do this because we know that's the only way they will reach the top of the mountain, too, and discover the next challenge in their path to overcome.

I feel honored and blessed to walk side by side up the mountain with my child, learning how to help navigate her life in a world that must seem terrifying. I will continue to climb every mountain with her, and to plunge into unknown waters with her, because she is worth it. And the more I am willing to take the plunge, the more I can heal as her mother.