Friday, January 29, 2016

Losing Teeth is Tough But The Tooth Fairy is Smart

Sometimes being a parent means you have to do really horrible things to your children. Like pull a tooth. A tooth that's been dangling for months. Poor Julianna. Last night, I was helping her brush her teeth (I do this once in a while to make sure that everything looks okay) and was reminded of that tooth just hanging by a thread.
Here's a little history on this tooth: it was hanging by a thread back in November. I told her, "Julianna, you need to lose your tooth by Blake's birthday on the 16th, okay?" Didn't happen.
I then told her, "Julianna, you need to lose that tooth before we go to Utah for Thanksgiving, okay?" Nope.
Then, "Julianna, you need to lose this before you turn 12 (Dec. 6), okay?" No again.
By Christmas? Nope. New Year's? Nothing. She was not going to let me near that tooth, no matter what Joel and I did.
And by the way, the ENTIRE adult tooth had grown in already. Actually, I think it had been fully grown since Christmas. I had no idea how that baby tooth was surviving. 
So last night, I don't know what came over me, but I told her, I'm sorry, it's coming out. Right now. She was not happy about this, but it had to be done. And she could tell I meant business. So out it came, and while she cried for a few minutes and Joel comforted her, I was examining the tooth. The root looked curved, almost like it wrapped around the adult tooth somehow. No wonder it didn't come out on it's own! And as I was looking at the tooth over the bathroom sink, it slipped from my fingers and fell down the drain.
Blake said, "Oh wow, Mommy, REALLY?" He likes to say this to me a lot lately.
Julianna was concerned that the tooth fairy wouldn't come anymore, and I told her, don't worry, she will come. After the kids were in bed, I realized we had absolutely NO cash in the house, not even a nickel. Good thing the tooth fairy is so smart. Here's the note she left for Julianna under her pillow (in her fancy tooth fairy writing):
The tooth fairy's money fell down the drain, too! (Julianna said that was her favorite part). And since the tooth fairy said Mom had to buy her an ice cream at McDonalds instead, guess where we went after school?
Yep, I don't mess with the tooth fairy's specific instructions, and I told them this, too. Blake asked me why the tooth fairy always tells us random things. I told him because she is VERY creative. And Julianna has asked me about 12 times already if she's still going to get money from the tooth fairy tonight. Yes, I've told her, 12 times. As long as it doesn't fall down the drain again!
This is the fun part of being a mom. Creativity can really come in handy. Pulling teeth isn't that great, but a necessary evil of parenthood. I'm sure Julianna's forgotten all about the horrible incident by now and loves that she got her ice cream!

Thursday, January 28, 2016

The Day My Life as a Parent Changed Forever

It began like any other day. I was a new mom to the cutest redheaded toddler you'd ever seen. I graduated from college the year before; my husband was weeks away. We were anticipating starting our new life.

Julianna and I liked to cuddle on the couch and do flashcards or sing songs. She loved “The Wiggles.” She was a smart girl, though she had some quirks. I tucked these quirks, along with any associated fears, in the farthest corner of my mind, positive that she would grow out of them.

And then there was a knock at the door. Through the peephole I could see it was my neighbor who lived below me, a mom who was a speech therapist at a preschool. Without a care, I opened the door.
She wore a kind greeting tainted with concern. I asked if she would like to come in. We sat down on my old couch with a denim slipcover. Our conversation went something like this:

"Kera, I wanted to talk to you about your daughter."

"Okay...what is it?"

"I've noticed she does some things."

"Really? What things?" The little corner in my mind began to open, like someone was unzipping a purse, letting the contents fall out.

"Well, she likes to shake her head a lot. And I've seen her flap her arms."

All the contents of that brain purse scattered in my mind. My body temperature soared, my face simmered. I couldn't hide her little quirks in my brain—of course others noticed!

I imagine at this point that she bit her lip, wrung her hands together, or rocked her body in nervousness. I imagine this because that's what I'd do if I were about to tell someone these words:

"I think your daughter has autism."

Hot tears streamed down my face, burning my eyes. The objects in my brain were darting around, seeking some connection to autism. Autism? It was the year 2004. Autism was not a word that was looked upon fondly. Now tears of hopelessness, like every teardrop was a hope blown into the wind. And then just as suddenly...guilt.

 I wiped my face. "Was fault? Did I do this to her?" I uttered.

 "No! This is not your fault. You did nothing wrong."

After she left my apartment, I hugged my daughter tight, rocking her, crying on her red hair. We sat there long enough for me to gather up those brain purse contents and start making sense of them.

I still have the purse, but it's not in my mind—I carry it, in the open. My daughter is 12 now. I've had time to sort through the contents and accept them as a part of her. I've tossed out the fears and added faith, hope, and knowledge. I still wonder, though, what courage it must have taken for my neighbor to knock on my door that day, because even though it took a few more years to discover, she was right about autism.

Autism? It's 2016 now. That day did change my life forever as a parent, but we've come a long way.
Autism has come a long way, too.

Today I Asked a Mom if Her Son Had Autism

Today I did something brave. I asked a mom if her son had autism.

I was sitting in the school lobby, waiting for Nathan's speech session to conclude. A mom walked in with her young boy, also carrying a toddler in her arms. This boy was rowdy and full of energy. He had trouble speaking. He ran past the reception area and into the teacher's lounge, and she chased after him. She stayed by his side until a classroom aide arrived to take him to class. I sat and watched the whole thing happen.

I was sitting alone so there was no reason for her to think that I could possibly know anything about her situation. In those moments, I always want to say something, but I usually don't. But if I did speak up, I would want to let the mom know that I understand, that I'm not judging, that I get what she's going through with her child. Being uncertain prevents me from speaking out, and these questions go through my mind: What if I'm totally wrong about autism? What if the parent hadn't had their child diagnosed yet and I'm bringing up tough feelings for the parent? What if the parent yelled at me?

Nathan came back before this mother left. As fate would have it, we walked out of the school at the same time. She was walking a few feet in front of me with her toddler. I grabbed Nathan's hand to keep him from running into the street and said,

"Hi there! Does your son have autism?"

She turned to look at me and smiled. No judgment on her face at all. "Yes, he does."

"Oh, my daughter is 12, and she has autism, too, though she's not as rowdy as your little guy!"

"Oh, she's 12?"

There was an awkward pause. I said, "I don't usually say anything to people when I see a child with autism, because I don't want to be rude. But I did today. I just felt like I needed to. I hope it's okay."

"Sure, I don't mind at all. I'm not offended." She smiled again.

"Oh good. Well, I just thought it would be nice for you to know that I understand, and that you are not alone in this journey."

"Thanks!" She walked to her car, and I walked to mine.

I don't know if I'll ever see her again. But I'm glad I said something this time. I hope it makes her day go a little better, just knowing that someone close by understands. It sure made me feel better.

Sometimes being brave is actually being kind, and giving a person the chance to connect even if it's only for a moment, to let them know they are not alone. It's about being a friend.

Wednesday, January 27, 2016

Why Special Needs Parents Need to TALK to Others

Years ago, when my oldest two were around 5 and 2 years old, my good friend and old college roommate came to California with one of her sisters to visit. They live in Tennessee, so it was a real treat to have them. We met up at a nearby mall and walked around, me with my two kids in a double stroller, talking and enjoying being together.

At lunch time, we headed to the food court to eat. After sitting down, my good friend, who knew a little about my daughter's recent autism diagnosis, asked me how she was doing. This question is usually answered with a "Fine, I guess. As good as she possibly can!" Something like that. And next, she looked me right in the eyes sternly and I'll never forget what she asked:

"Okay. But how are YOU doing will all of this?"

The autism diagnosis was still so new to our family. I didn't talk about it much because I was still trying to come to terms with it. It was the first time one of my own friends had really wanted to know how I was doing with all of this. I can still picture myself sitting there at the booth next to my kids in the stroller, eating some food court item like corn dogs or soft pretzels. I remember my friend staring into my eyes for a response. Though we hadn't seen each other in a few years, she knew me. She really wanted to know how I felt, and I honestly didn't know what to say. But I knew it was something that I needed to process. I don't remember what I responded, but it probably went like this:

"I'm not sure yet. I'm still trying to figure that out. It's been an emotional time and I'm still coping. I don't know what the future holds. That's probably the hardest part. Not knowing how far she can go or what she will accomplish, and also knowing that how far she does go largely depends on what help I'm able to get her and how dedicated I am to this. Everything is up in the air."

She's not a special needs parent like me. But she was a new parent. And she sensed that I needed to talk about what I was facing, and I don't think I even realized I did. Sometimes just talking to a person is what helps you realize where you need more strength.

When is the last time you have sat down, IN PERSON, with someone, and they have asked you how YOU are doing with everything? And they really meant it? How did it make you feel? Did you feel better after talking about it? When is the last time you asked someone the same question, and really meant it?

I know that talking to people over the years, on the phone or in person, about the challenges I've faced raising my kids has been a LIFESAVER. Keeping it all inside was not an option for me. Talking helped me get through the very trying years I've faced. And now writing has connected me with even more great support. Talk about it--with a friend, a therapist, a doctor, a family member, your child's therapist, anyone who is willing to listen. It's important that you know how YOU are doing, too. Sometimes you don't know until you let it all come out...

Tuesday, January 26, 2016

Nathan's Name Change Fiasco

When Nathan was born, things were a little hectic in the hospital. Because of his cleft palate, we had many doctors and nurses visiting and giving advice. And of course there was the usual push for all the paperwork, which we did throughout our stay.

We decided to use my grandpa's name as Nathan's middle name. He passed away a few years before Nathan's birth, and we thought it was a great way to honor him. Blake, my other son, has my other grandfather's first name as his middle name. So we liked that we could honor both grandparents through our kids.

When it came time to sign the social security form with the official name, we mistakenly wrote my maiden name as his last name on the form (what my grandfather's full name is). Even though both Joel and I reviewed the form, we did not notice that the wrong last name was printed, probably because we know my grandpa's name well. So it got sent off to social security, and we went home with our newborn. I spent the first few weeks learning to pump for him, and to feed him with the special bottles. Things were still hectic.

Then we got his social security card in the mail. I opened it, and didn't even think anything was wrong. My husband looked at it and didn't notice, either. Probably a few days went by before I did a double take--"Oh my gosh! That's not his last name! It's my maiden name! My grandpa's last name!" I told Joel, and we both laughed about it, and didn't think much of it. We had no idea how much Nathan's social security card would affect things down the road...

First problem: filing our taxes the following year. The IRS would not accept them, and we could not figure out why. We called, and were told it was because the name of one of the family members did not match the social. So we had to put the name shown on his card to have our taxes accepted. Not a big deal, we thought. We'll just remember this for next year, and change his name when we could. How hard could it be?

Life continued to be busy with all of Nathan's doctor appointments and feeding around the clock. Then came time for his surgery, and many follow-up appointments. Another year came and went, and it was time for taxes again. We forgot about the name issue. It was another reminder that we needed to get that changed! So in the summer of that year I went on the social security website and printed out some forms. I sent in the paperwork and waited. It came back denied. I called them. They said we had to go through the court system to have his name legally changed. I was astounded. I told them it was a simple mistake made in the hospital. They said it didn't matter. Still, it wasn't a pressing issue for us...yet.

Early the following year, 2015. Nathan is now two years old. We had to change insurance plans for the kids. This new insurance required a birth certificate. I still hadn't gotten him one (yes, I am lazy and usually wait to get one until I NEED one.) So I went down to the vital records office. They had to print his birth certificate with the name on his social security card. And because I needed one for him to get insurance, I had no choice but to pay for a birth certificate with the wrong name. I vowed, then and there, to get this name change taken care of. The courthouse was in the same area as the vital records office. So I went through their lovely metal detectors and talked to a clerk. They gave me a big packet of information on how to get a name change. They told me the court fees were $450 per person, per petitioner. Joel and I were on the original form. This meant $900 for a little mistake in the hospital. Mistakes can be costly!

The big stacks of paperwork sat in a file for a few more months, until fall of last year. I had some time to figure it out, and went back to that courthouse ready to tell my story. I had the paperwork filled out. I explained that it was a simple mistake, and we just needed the last name changed. They agreed to waive our court fees. HUGE relief! They scheduled the court date for January 21, 2016. Our next step was to have a local paper publish the official name change in the paper for 4 consecutive weeks, just in case anyone objected to the new name and wanted to appear in court. Really? I told them NO ONE would care. But of course, I had to follow protocol.

After I left the courthouse, I called the newspaper and asked how much it would cost to have this printed for four weeks. $110, they told me. Well, it's better than paying the $900, I thought. I bit the bullet and paid the fee. We got a letter in the mail from the newspaper after it was published.

January 21st came. Joel had to take a day off work to come with me. The appointed time was 1:30. We sat in the waiting area with other adults and lawyers. The court clerk came out and asked who was there for a name change. We were the only ones. He said we were first. Hallelujah.

We walked into the courtroom. Another clerk asked if we wanted a court reporter for this case (the person who types on the little keyboard). If we did, we'd have to wait another 20 minutes for this person to arrive. We told them no, we don't need a court reporter. We stood as the judge walked into the room. We had to raise our right hands and swear to tell the truth. She asked us to come to the front, and give her the statement from the newspaper. Once she looked over that, she simply said, "Okay, we are here to change the name of your son from Nathan ___ ____ to Nathan ____ _____." She spelled his new name in full. We said yes. And that was it. We were dismissed. It took literally 30 seconds to get his name changed. She said we could come the next day to the clerk to get the official form with her signature.

This morning, I went in to get that form. I asked the clerk what my next steps were. She said she had no information for me. Wow, so helpful at these places. She gave me the paper and I began to leave. As I walked toward my car, thinking about how happy I was that I would never have to set foot in that place again, I felt inspired to go to the nearby vital records office to ask what to do. The clerk there said that my next step was to change his name with the state. She gave me some forms and a giant packet. Once the name was changed with the state, I would be issued a new birth certificate (that I would have to pay for, again), which I could then send to social security, and this whole mess would be behind me. I felt relieved, knowing I was closer now.

I got home and reviewed the packet from the vital records office. It said the name change form from the court needed to be "certified." I looked at the form that was printed for me. It certainly didn't look certified. I called the courthouse and asked if it was. They said no, it's not certified, and that there was a $25 fee to have this done. Really? So not only did they give me a useless piece of paper, but they also didn't even care to ask if I needed it certified for getting the name changed through the state. There is absolutely no communication between the court system and the vital records office at all. I asked if they could certify the record in their office, and have it sent to me in the mail, since I was just there this morning. No, it had to be done in person.

Guess where I'm going again tomorrow? My new hangout, the courthouse. This should be the last step in getting Nathan's name corrected, once and for all! I'm sure my grandpa is laughing in heaven over all of this! Would you look at that little face, though? I guess all this trouble is worth it!

My advice to anyone who has read this: make sure you fill out forms in the hospital correctly!

Sunday, January 17, 2016

Disabilities Can't Rob Potential

When you have a child with special needs, you might hear these words: limitations, impairments, disabilities, delays, or challenges. And in the beginning you might think, What does this mean for my child? What does the future hold? While it may be easier to settle, to frame your child's potential within these limitations provided by doctors or schools, it's better to focus on that one word: POTENTIAL. Potential means possibilities. Potential means progress. Potential means we as parents can believe in our child more than anyone else. Potential means opportunities to succeed, to make goals and help our child take steps to reach them.

Here are four reasons why goal setting is essential for ANY child with special needs:

1. Goals are individual and personal, not for comparing.

Whenever I hear the word "individual" I think of IEPs: Individualized Education Plans. The thing I love about IEPs is that they are made just for MY child and no on else's. They're not comparing my child's progress to any other child's. And that's just what goals should be: individualized.

There was a meeting, about 5 years ago, where I requested that a goal be added to my daughter's IEP (one involving a life skill). One person was astounded that we would even consider this goal, and explained that many children in school do well despite not reaching it. She said that the school district could not promise success, but could help her do some small tasks in the school setting.

I didn't settle for that answer—I didn't want to compare her to any other child, because as her parent, I know her better than anyone. I found a new way for her to reach this life skill. She learned it in our home with a trained professional in just 3 sessions.

Don't be afraid to dream the outside the so-called boundaries for your child--he just might achieve it.

2. You will never know until you try.

When I was a younger mom, I got trapped in the mindset that my daughter on the autism spectrum just wouldn't be able to do certain things. One day my husband decided it was time to teach our two older kids to ride bikes.

"You don't mean Julianna, right? How is she going to learn?" I asked him.
"We have to try!" he replied.

So we spend the entire winter break that year in a parking lot. Our middle child Blake, who was 6 at the time, caught on right away. Julianna, our 9-year-old, was struggling. But my husband didn't give up. Day by day, she made little bits of progress. It was like a miracle unfolding before our eyes. By the end of the break, she was riding independently. To me, she achieved what I before thought was impossible.

I believe in trying, and it doesn't even have to end in success. Either way, you will learn something valuable about your child.

3. Every child can progress in some way, no matter what the limitations may be.

As a younger mom, I also felt overwhelmed by the many therapies my daughter was involved in. The progress was slow and painful. Most times it seemed like she wasn't making any progress at all because I couldn't see results. There were some therapies that she tried and then I instantly felt defeated by them. I would give them a few months with my daughter, but give up, because again, I felt like there was no progress. If I could go back, I would have kept at it longer.

Progress is hard to measure at times. Looking back now, I can see how the different therapies we did stick to have helped her. She learned to walk through physical therapy. She has improved her speech through speech therapy. She learned fine motor skills and self-regulation skills through occupational therapy. She's learned and is still learning life and social skills through ABA therapy. I am amazed at how far she has come, and how much my perception of her potential has evolved. Limitations cannot rob any child of potential. Progress is happening, even when you can't see it.

4. You will have more purpose as a parent, and your child will have more self-worth.

Parents are hard-wired to relish in the milestones of their children. We love high-fives, sticker charts, giving awards and certificates. Seeing our child accomplish a new skill is rewarding, and often worth celebrating. And guess what? It's just as rewarding for our children. They love the high-fives, hugs, and pats on the back even more.

Last summer, we made a goal for Julianna to stop a troubling behavior, something she had done for years. We reached out to a child psychologist for help, and adopted a method to help her reach this goal. It took many painstaking weeks of trial and error, but in the end, she achieved it. The psychologist knew that this was a big milestone for her, so she invited the whole family to her home to have a party for Julianna. We had a cake and small gifts, and she was given a fancy certificate. This moment gave my daughter confidence and self-worth, and gave me a memory to cherish forever as a parent.

As parents, we are walking down the path beside our child. We might wish we could walk the path for them, be in their shoes, but we can't. It's their path, and we are the guides. We can't force progress, but we can foster it. We can't create success, but we can channel it. We can help them find the right path to take.

Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
-From "The Road Not Taken," by Robert Frost
As special needs parents, we have to be open to "the road not taken." The "road less traveled" might be a little more lonely, but I can promise you, you will make new friends along the way. It really will make all the difference. Never cease to dream about what your child can do.

Our children's limitations or disabilities might seem like road blocks, or dead ends, as we forge this path with our child. But if you're driving somewhere and reach a dead end, you don't give up! You turn around and find a new way to reach your final destination! What is your child's destination? How will you help him get there?

Wednesday, January 13, 2016

What Disabilities and Differences Mean to Me

My first child was born over 12 years ago. As she grew, I noticed things were a little different. She wasn't meeting her milestones. Having a child with challenges seemed impossible for me to fathom at just 22 years old.
Before I even faced the issues with my daughter, my second child was born with two strange marks on his stomach. Doctors diagnosed him with mastocytosis, a rare blood disorder. With the right help, I felt like I could take care of him. I was still worried about my daughter, though.

When my son was around 18 months old, I finally reached a breaking point with my daughter. I had to know what was going on. I didn't want to hear what I thought it might be, but I knew I needed help, desperately. Autism was the diagnosis (along with others over the coming years). I cried and cried. I worried about her future. I didn't have enough support to figure it all out.

When my daughter was 9 and my son was 6, we had another child. He was born with a birth defect called bilateral cleft palate. I couldn't believe I was given another child with a challenge. I couldn't believe how different each child's challenges were. I wondered if I could hold it all together.

At this point, I began to ask, "Why me? Why them?" Why was I given children that needed to see doctors regularly? That needed surgery? That needed specialists, IEPs, and therapists? Why did some parents have typical children and not me? Why were my children given these challenges and not other children? I felt justified in asking these questions, considering each of my children was born with a unique diagnosis.

But then I realized, soon after my second son's birth, actually right there in the hospital with him, that wallowing in the "whys" would get me nowhere. I simply don't have the answers. I won't have the answers, not in this life. And I remembered a quote I had heard, that when life brings challenges, instead of asking "why," we should ask, "What am I supposed to learn from this?"

Life is all about challenges--it's not supposed to be easy. Life is a test. Trials and hardships come to everyone, regardless of how rich or powerful or poor or smart or kind or mean they are. We have no control over these trials that come. Diseases, chronic illnesses, disabilities, handicaps, addictions, mental illnesses--they can happen to anyone at any time. Some last a lifetime, some don't. This is how we learn how strong we are, as parents, as individuals. This is how prove ourselves, how we show that we won't give up.

But even when you're trying hard to discover what needs to be learned, you stumble. And you need help again to gain your focus. What gets me through this learning process is HOPE. It's what I cling to when I feel like I'm drowning in my struggles. Where do I get this hope?

I gained a measure of hope just 5 days ago, while at my daughter's swim lesson. With a new time slot, we got to meet a new parent and child. This child happened to have autism, like my daughter. The father and I talked during the lesson. He understood my situation, and I understood his. Just knowing a real person who gets what I am going through as a parent does wonders for me. This connection bolstered my hope, and gave me newfound strength to go forward. Moments like this always happen when I need them, and I know it's not by chance.

What else gives me hope? Knowing that these earthly challenges are just that--earthly, temporary. If you believe in heaven, you have to believe that the struggles we go through, that afflict us in this life, that afflict our children, are not permanent. One day I will see my child with autism made whole, perfect, and complete. One day, I will be able to have a heart to heart conversation with her, and she will finally be able to share with me her deepest feelings. Autism may have limited her during her earthly life, but in the eternal scheme of things, autism will just be temporary. Until then, I will love her just the way she is now, and help others see that she is more than her diagnosis--it's only one part of her.

These diagnoses that are given to children, to adults, during this life--they are important. They bring a measure of understanding for others who might otherwise judge or question. The diagnosis is often the first piece of information I share about my kids (when needed); after that, anything else shared about them just shows what someone with that diagnosis can accomplish. Society is learning more and more about disabilities every day because people are writing about it, openly. So openly that others might feel parents are exploiting or objectifying disabilities in general.

Many questions come to mind when I think about this: Why do I share my children's diagnoses? Do I want them to be defined by their diagnoses, or to be treated just like any other child? Why do some share their disabilities, and others not? Isn't there a reason why we meet with doctors behind closed doors? Why medical history is confidential? Why IEPs are written and signed in a closed office and sent home in sealed envelopes? Why do I, and others, feel the need to be open about disability and differences? What has changed? Are we damaging our kids by sharing a diagnosis?

Now of course I'm not going to share every private detail from my kids' medical history or IEPs or doctor evaluation reports. But if I'm to be honest, before I started talking openly about my children's challenges, I felt like I was living a lie. There was a time when I would blog (mostly journal) the life of my family when we were all younger. I would write about the happy things we did as a family, and behind the scenes, I was going to countless doctors with my kids, meetings, advocating on very long phone calls, and crying myself to sleep. No one knew, besides my family, about my children's challenges. Even after my youngest was born with a cleft palate, I never mentioned it publicly. When he was in the hospital for his surgery, I posted a picture of him in his hospital gown and people became concerned. Those close to me commented that he was having palate repair surgery and I flipped out. I deleted the comment. I told the person privately that I didn't want his cleft palate talked about.

I felt bound, like I couldn't talk about what I was struggling with as a parent just because my kids had health issues. I didn't want to be viewed as the parent who wanted pity, or have others feel sorry for me. And I wanted to protect my kids, and make sure they were viewed for who they were, not a diagnosis. I thought people would see them differently if I defined or labeled them. But the diagnosis is not the person--a person is a person first. A child a child, first. The diagnosis second.

I soon realized that I couldn't live a lie anymore. This was my life, and I didn't want to feel like I couldn't ever talk about it. And I reached a point where I knew that from what I had been through with my kids, all the experiences I'd had to that point, were worth sharing. Just like that dad I met at the pool--that connection gave me hope. Keeping my life to myself was killing me inside. Where was my hope, my connection? Where could I find someone who would understand me? There weren't any support groups near me. I only had a few friends I could talk to, and family of course, but I still had to hide so much of myself and my kids.

Soon after my son's surgery, I heard about a blogger who did a special needs spotlight every Friday. I emailed her about my experience as a parent. She wanted to feature my story. It was the first time I had ever shared it. Parents commented on my honesty. They mentioned that they could relate. Finally, someone understood my life. I was free. Writing my story gave me the hope I was searching for.

I began this blog and wrote more openly about my kids. I've connected with so many parents like me. Even my own parents have noticed a change in me since doing this. I'm more confident in my abilities, mainly because I know I'm not alone. My kids have not been damaged or exploited or objectified--they have been celebrated--not because of their diagnosis, but because of what they can do despite their diagnosis.

I think about how different I would have felt, 10 years ago, when I first began suspecting my daughter had autism, if parents were writing then. Ten years ago, people weren't talking about it like they do now. Autism was viewed as something to be feared, as a death sentence. It's no wonder I was in denial about it. People weren't writing much about disability in general. Look how far we've come.

I don't like that my children have given me challenges to overcome as a parent, but I can't change it, either. I can either become a better person through this journey, or a bitter person. I don't see them as a burden—I see their challenges a burden, for them. And as parent, my job is to help them through their challenges until they are able to do it on their own. I will be by their side, supporting them, sharing their successes, building them up, and allowing others to build them up so I am living my life as parent to the fullest extent possible. No more hiding.

Everyone has unique challenges. Every person's challenges and successes make up the person's story. And sharing this story can lift others, and bring the hope and connection others are seeking. Don't be afraid of your story just because it might include disabilities or diseases, or things you think others wouldn't understand. Disabilities, diseases, and illnesses are just one type of struggle that people face that can bring people together in strength and hope.  There is someone out there who can benefit from what you have to say. We are here to learn from each other.