Today is World Autism Awareness Day, and it is my birthday. I want to say thank you to the girls in her life.

Today is World Autism Awareness Day, and it is my birthday. I want to say thank you to the girls in her life.

Thank you for being my daughter's friend. I know she doesn't always talk loud enough to hear and she follows you because she doesn't want to be alone. She tries her best in social situations and usually doesn't make eye contact. I know she can't be like your other friends, that you can't talk to her like other girls, but you include her, and that means everything to me. Not everyone is willing to do it. I wish they were. I wish others could know her like I do, but that takes time.

Doesn't any friendship take time, though? It can be awkward in the beginning, but once you work out the kinks and get to know the person, it's comfortable. That's all she wants..is to feel comfortable around a person. And she can, but you have to show her that you care. You have to talk to her, even if she doesn't respond, and even when she does but you can't understand her. You have to be willing to be a little uncomfortable before you can be comfortable. But again, most friendships are like this. It takes time to get to know someone--anyone.

She might not appear to be having fun, but she is. Just including her in your group makes her feel like all the other kids. She knows she's different, but she doesn't want to feel that way. Bring up the word "autism" and she'll tell you to stop talking about that! She's trying to understand what autism means to her right now. And she just wants to be like everyone else, and you help her feel this way by saying hi, by smiling, by giving side hugs (the only kind she allows), by talking to her, by being patient.

Whenever I see other girls or teens socializing and laughing together, and she is watching with me, I wonder how she feels. So I asked her yesterday. I said, "How does it make you feel when other kids are talking and having fun together?" She said, "I don't know--happy?"

On the way to a church event last night, I drove her and some other girls. Again, they were all talking and laughing about typical girl things. When they started asking each other what pets they've had, I so hoped she would speak up and talk about our cats Jack and Jill, and how Jill ran away and Jack had to be put to sleep, but she didn't. When they started talking about Merida from the movie "Brave," I hoped she would say, "Did you know that I'm going to be Merida for Halloween this year?" (She chooses her next Halloween costume the day after Halloween). But she didn't, and that's okay. I spoke up, and then the girls asked her more questions. Another parent at the church event told me, "I don't think the girls see her as having autism. They just see her as Julianna." You did this, and again, it means everything to me.

Autism may affect her ABILITY to socialize, but it doesn't affect her DESIRE. It doesn't stop her from seeing what friends do, what friends can be. It doesn't stop her from saying hi to all her friends and initiating that side hug, or saying bye for another one. She's getting braver, and she's branching out in her own way. She wouldn't be able to do that without you. And even though it scares me to see her doing these things, I know you will watch out for her. It means I can let go a little bit more to see her grow because others care about her like I do.

So, thanks for remembering her. Thanks for being her friend. As her mom, this means the world to me and often brings me to tears. Everyone deserves a friend.

#worldautismawarenessday2019

A Letter to My Daughter's 1:1 Aide

Tonight I lay in bed, after saying my prayers, thinking about all the things I'm grateful for, things I might need help with, and one single image keeps coming back to me: watching my daughter with intellectual disability and autism walk to my car every day in the flood of middle school students pouring out of the gate. As I search for that red, curly hair, I also search for you--the one person who makes it possible for my daughter to attend school at all--her aide. The image of my daughter walking to the car, surrounded by her peers--but feeling safe because you are there with her. Now that you have begun your fourth year as her aide, I am feeling more and more blessed that you have always been there for her. How did I get so lucky?

I remember how it was before, how I used to worry endlessly about sending my daughter to school. I remember observing her in a general education class at the beginning of second grade, feeling helpless because her wonderful resource placement was pulled from under her during the summer break. My only option was to have her attend a special education class, but I knew that wasn't for her. I also knew, while watching you sit there in that large class, all alone, afraid to look up from your desk, rocking your body back and forth, that sending you to school was doing more harm than good. So by the time Winter break came, I had made arrangements to homeschool you. After several painstaking IEPs, you and I were on a new path together, and I couldn't be more excited. Little did I know that it would be short-lived. Just 3 months into our homeschool journey, I became pregnant with our third child, and I knew for certain that there was no way I could give you the attention you needed to thrive once the baby came. But what choice did I have?

I remember taking you with me to observe the sped classes before the school year ended, and meeting with one of the teachers who reassured me that new classes were going to be formed shortly after the next school began. I knew none of the classes would be right, but I also knew I couldn't homeschool you with a newborn. So I had to trust in the teacher's words.

Your third grade year began, and once again, I found myself observing you in your new classroom setting, this time very pregnant and uncomfortable. The class was much lower than your level, but I couldn't send you to a general education class, either. I thought about how you came alive when I worked one on one with you, and wondered if obtaining a 1:1 aide would even be possible. No, definitely not, I reasoned. All I heard was that they were a nightmare to get, but as the weeks went by, and no new class was formed for higher kids like you despite my many calls to the district, I knew the aide was the answer.

So I brought it up to your teacher/case carrier. No, I demanded--after all, I'm your biggest advocate. I said Julianna needs a 1:1 aide so she can go to a regular classroom. She doesn't like the special education class. She deserves a chance to learn with regular kids. To my surprise, this angel of a teacher agreed with me, and did everything in her power to help--even things that could mean getting fired. She even "assigned" one of her aides to work directly with my daughter to have more evidence that an aide was needed. I still remember her words: "I know exactly who should work with your daughter." And it was you--and as a very pregnant mom I got to know you in those weeks of anticipation for the meeting. I hoped so much that the district would allow you to be her "helper." I saw how much it was benefiting her already, and I finally was beginning to have peace of mind.

The day of the meeting came, where a team of adults would determine my daughter's fate, and though I had been to many IEP meetings before, this one had to be the most nervewracking. We sat around that table, and the special education director read through a series of questions that would either prove or disprove my request. By the end, it was decided that without a doubt, she would get the aide. Literally weeks before my baby was to be born, I finally was at ease with my daughter's placement. No more worrying about sending her to school--she would have someone to help her with not just schoolwork, but with socializing, playing on the playground, being brave, opening a juice box, tying her shoes, and all those other things that did not come natural to her. She was a "mom" to her when I couldn't be.

Some of the directors tried to warn me before signing the IEP that giving my daughter an aide was the most restrictive placement, and the goal is usually to make it the least restrictive. So I tried to explain that for her, it was quite the opposite--that school itself was restrictive for her, but giving her an aide helped her become free to attend. Yes, it might hurt the bottom line for the district, but isn't education about giving every child a chance?

And you are still there, her wonderful aide. You have become a second mother to my daughter. You know her probably better than I do. You come to my car to pick her up every morning, and without hesitation, she gets out of the car and goes to you--that can't be said for many other people. You give her confidence to do things she wouldn't otherwise have confidence in. You ease her fears and anxieties just as mine are eased.

You were there on the first day of every school year, even when it meant leaving your own little boy behind. You were there when you became pregnant with your second child, and my daughter missed you when you were on maternity leave. You came to a private orientation with the vice principal of the middle school before the year started, and as the vice principal mentioned certain things about the coming year, you were the first to say what would work or what wouldn't work for my daughter. You know her so well, that sometimes I'm jealous, but in a very good way. I'm glad--so very, very glad--she has you.

You were there on the first day of middle school, bright and early at 7:30 am, even though your own son was going to his very first day of kindergarten an hour later. You knew how important it was to be there for my daughter on her first day of a brand new school. You could have told me that you wanted to be there to see your son, and I would have understood. But you didn't--you came to be there for Julianna. I hope you know how much that means to me, and to her. I hope you know how much that means you love my daughter and care about her success just as much as I do. Again, how did I get so lucky?

I don't know how much longer you will be with her. I don't know if the district will try to say that she's doing so well in school and doesn't need an aide--much like taking medicine away from a sick person who needs the medicine--and if there will ever be a fight to keep you. You better believe I'll be willing to fight for you. School would not be possible without you there.

And so as I sit in my car, waiting to see that redhead walking side by side with her faithful aide, I want you to know all these things that I could never say in person. I mean every single word. Without you, I wouldn't have as much hope in my daughter's future. And as I look to that future, I imagine my daughter walking across a stage at middle school graduation, and then high school graduation, and I know you will be there cheering her on. Maybe you'll even walk across that stage with her--or maybe you'll tell her to do it on her own, and she will, because she trusts you. I trust you.

Thanks for being there. Thanks for being one of the biggest parts of my daughter's educational career. Thanks for the tears you showed at many awards assemblies in elementary school because you wished that my daughter were up there getting awards like the other kids--after all, you know how hard she has to work--much harder than most. Thanks for helping her become who she is now, for helping her grow in ways that would not have been possible. And thanks for not giving up, even though I'm sure there were times when you wanted to. My daughter might not be able to express how she feels, but I can, and you have gone above and beyond your duties as an aide, because you are much more than that now.

How A Diagnosis Can Seem Like Being "Typecast"

Is sharing a diagnosis a good thing? Or is it better to let people figure it out? Does the diagnosis matter all the time? What does sharing a diagnosis do, exactly?

I have trouble with this often, knowing what to tell people when they encounter my 12-year-old daughter. Most everyone that knows our family is aware that she has autism--naturally, word gets out. But when we are out in public, and something sets her off (which is becoming more and more rare), I have been known to tell people around me that she has autism. In fact, a number of years ago in a Wal-Mart line while she was having a horrible tantrum and people all around me were staring, I blurted out, "She has autism, OKAY???" That seems to set people straight again, since most everyone in society has at least heard of autism, or knows something about it. (There are plenty of parents writing about it, and self-advocates, too. And that's a good thing. Keep writing and sharing.)

But you know what? I hate that I have to use her diagnosis as an excuse for her behavior, or to explain her behavior. Because once the word has been applied to her--once people have been told she has autism, she has, in a sense, been "typecast." It changes how people view her and interact with her. It just changes everything.

The word "typecast" makes me think of certain actors in Hollywood. Those poor children who grew up playing the characters from Harry Potter--talk about being drawn into a box. Sure, some have broken out and played other roles, but they will always be Harry, Hermione, and Ron. And what about Lord of the Rings? Elijah Wood and Sean Astin are hobbits, forever. Steve Urkel from "Family Matters?" Screech from "Saved by the Bell?" Will we ever truly see these actors as anything other than what they have portrayed for so long on the screen? This typecast thing must be pretty tough as an actor.

But back to us regular people. What about those kids with "labels?" Haven't we essentially done the same with them? When I tell a person my daughter has autism, is she then written off as someone with autism? Someone who automatically, indefinitely has no capability to be a friend to someone, to have fun with, to talk to? Someone who is so different that there's no point in trying to connect or relate? This is the danger that I see behind sharing the diagnosis--the person being told the diagnosis sets limits on the individual based on the knowledge they have of that particular diagnosis. The individual has been typecast, prescribed a specific description of characteristics, and only very few will actually try breaking through the boundaries of so-called "definition" to discover what lies inside that box.

Those few are, of course, parents. Family members. Close friends. Teachers. The ones who don't even see the diagnosis anymore, but the child or individual for who he or she is. They see potential, abilities, no limits. They see what others do not see, because they love. Love can also be spelled TIME. They've had time to love. "Perfect love casteth out all fear." (1 John 4:18). And maybe the root of typecasting is fear, after all. Fear of what a person does not understand about a disability or disease. It's easier to set a boundary based on what you know, rather than digging deeper. Maybe if we treated all people out of love there would never be a need to typecast. Or maybe the diagnosis wouldn't be a boundary, but a bridge to gain new understanding--a bridge that leads to a starting point of a beautiful relationship, that leads to love.

Just imagine if we viewed others out of love and not fear. I wouldn't have to fear what others would think when I explain that my daughter has autism. But you know what, there's a good chance that I wouldn't even have to mention the diagnosis at all, because we are all different and diverse, and with love as our lens, it wouldn't matter what a child or person might be faced with. Love would conquer all.

Those poor typecast actors trying to break through what others see them as. Daniel Radcliffe has certainly proven he can be more than Harry Potter. Dustin Diamond has pursued other avenues as well. And who could forget the episode when Steve Urkel ditches the nerd-clothes and plays another character, one much more desirable and good-looking? Is it possible that those kids with "labels" can be viewed differently, too? Can they be viewed as more than their diagnosis by those outside their close-knit circle? I think so. I know so. Sharing the diagnosis might change things, but it shouldn't limit things--only open new doors of understanding. As long as love is part of the equation, anything is possible.

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Julianna Gives a Talk in Church

Church is a big part of our lives. Our family belongs to the Church of Jesus Christ of Latter-day Saints. My husband and I were both born and raised in this religion, we married in the San Diego Temple after meeting at Brigham Young University, and now we raise our "special reds" in Southern California. Such a typical Mormon story, right?

The LDS/Mormon church is more than just a Sunday thing--we live it every day. We read scriptures with our kids and say prayers--we have since they were born. We have Family Home Evening every Monday night (a family time where we share a spiritual lesson and enjoy being together). Joel and I serve in church callings, sometimes very demanding ones. Our kids are blessed to attend their primary classes and boy scouts and activity days and fun primary activities. We have lived here since Joel graduated from BYU 11 years ago. This is our home. The ward family, or congregation that we attend, has seen my children grow up. They have helped me when I've struggled, and believe me, it's been a lot. So in short, being a member of this church is our livelihood and our strength. I know I haven't talked about it much here, but I owe so much to my religion and beliefs for my courage and hope in the face of so many trials.

When Julianna turned 12 years old in December, I was given a new calling: Young Women Secretary. This means I serve with the Young Women Presidency in our ward, and attend Sunday meetings and events for the Young Women, aged 12-18. It has been so wonderful watching Julianna experience mutual (Wednesday night activities), Personal Progress (a goal-setting program for Young Women) and the Young Women class on Sundays (the third hour of church.)

But there was one thing I wasn't planning for, or didn't even think about, after she turned 12: the fact that 12 year olds have the opportunity to give talks in church. Would the Bishopric (leaders or pastors of the ward/congregation) ask her to give a talk? Or would they assume that she couldn't? But can she even give a talk? This is Julianna, the girl who has never gone up to bear her testimony on Fast Sunday (every first Sunday of the month, the ward members fast and during Sacrament meeting, have the opportunity to bear their testimony). So I just waited to see if it would happen, and lo and behold, one Sunday last month, a member of the Bishopric approached my husband and asked if Julianna would be willing to give a talk. He came home to tell me.

Honestly, my first thought? Complete and total fear. How could I even possibly help her gain the courage to get up in front of over 100 people when she's never done it before? Luckily, we had 3 weeks advance notice, but we weren't given the topic yet, so the first week, we talked to Julianna about how she felt. We asked her if she wanted to give a talk, and she shrugged her shoulders and quietly said, yes. She's watched her friends give talks, and this girl truly wants to do whatever her peers are doing. So we went forward, trusting it was the right decision.

In that time, I also let her stand at the pulpit on a Wednesday night. I wanted to make sure she had at least stood there before she gave her talk. She did not want to talk into the microphone, but listened as I did.

Once we got the topic, personal revelation, I set out to write the talk for her. I knew I had to keep the sentences short and to the point. I also knew I had to type in out in larger font, and divide each sentence into separate lines so she could visually read it better. That night, we had our first practice after our family scripture reading. We told her that we were going to practice it every night until she gave her talk. This gave us 10 days to practice, and she was not always agreeable, but we persevered!

A few days into practicing, I noticed that when she read, she would not separate the sentences with a pause, and this made it hard to comprehend what she was saying. So I took a red pencil and drew bold lines between every period and comma as a visual cue for her to stop and pause at those parts. This seemed to help a little bit. I also blacked out some words that I thought weren't necessary--in the end, it was just the right talk for her. The funniest part was she didn't want to start her talk with "Good morning, brothers and sisters," like so many people do. She made me cross it out! Here's a picture of her talk below.

 

About 5 days before her talk was to be given, I decided to start recording her on my phone, and letting her watch it back. Every time, we would notice things to improve. And as it got closer, she really was sounding great! Her rhythm and pacing was perfect, and though her voice was a little soft, the microphone would make up for that. Also, every day since her assignment to speak, in our family prayers, we would pray for her to be able to give this talk.

The big day came, and Joel got home from his morning meetings before church with enough time to give her a Priesthood Blessing. I asked him to do this because I felt like we had to do everything in our power to give Julianna the best chance for success. His blessing of comfort was wonderful, and we left for church, still not knowing what might happen.

When we got there, we sat closer to the front than usual. I asked her if she wanted to sit on the stand until it was her turn to speak, or if she wanted to stay with the family in the pews. The speakers don't talk until after the sacrament is administered, so I wasn't sure if she would want to sit up there alone for close to 30 minutes. Joel suggested that I sit up there with her, so that's what I did. Before I sat down, though, I told the bishopric members that they would probably have to adjust the microphone so it was in the right place for her to be heard clearly, and they would also have to turn up the volume! I told them we had done everything on our part to prepare her, but that I still didn't know if she would do it. They were fine with this, so I sat down with Julianna and waited for the meeting to start.

A brother (man in the ward) sitting up there asked if Julianna was giving a talk, and I said yes. He asked me if I thought she would be brave enough to get up there. In that moment, I had to tell him I wasn't sure, because really, all the practice was great, but you just can't practice giving a talk without taking a leap of faith and doing it. The first time doing something is always hard, and for Julianna, this was going to be a HUGE first. I told him that I really hoped she would do it all by herself.

As we sat there during the sacrament portion of the meeting, I prayed that I could hold back the tears long enough to hear her speak. Being a mom is such an emotional journey, and sitting there with her, it was hard for me to believe that she was old enough to be doing this, and that she was actually willing to. It was really tough to keep my composure.

Finally the sacrament ended, and a member of the Bishopric announced the speakers. He then turned it over to Julianna. She looked at me, and I said, go ahead, you can do it! And I watched as she walked the 10 feet to the pulpit, placed her talk down, and began speaking after the bishopric member adjusted the microphone. I held back the tears as she said every word, more clearly than she ever had in any of our practices. I looked out into the congregation and saw huge smiles and even tears on the faces of the ward members. Julianna gave her talk, all by herself, and I couldn't have been more proud.

When she was done, I walked with her back to where the rest of my family was sitting, tears in my eyes. It was like she grew up in that moment, like she became a young woman. She did something that, 5 years ago if you had asked me, I would have never imagined it possible. But it was possible, and I owe a huge part of this to our faith and prayers, and even the prayers of some of you that read my post on Facebook the night before. I could truly feel your prayers!

It wasn't just prayers, though. It took a lot of work on our part and her part to make this possible. "Faith without works is dead." Without all the practice, Julianna wouldn't have had the courage to do this, either. Prayer and works really do go together. If you show the Lord all that you can do, he will make up the difference. I know for a fact that Julianna was helped as she gave that talk. To me, it was a miracle. She far exceeded our expectations!

When Sacrament meeting was over, I told Julianna that lots of people will want to come tell her what a good job she did, and that she should try to thank them when they do so. Well, it didn't take long before people were gathering around her to congratulate her, and it continued for the remaining two hours of church. I think she was getting overwhelmed by the attention! But I really appreciated all the kind words that were said. And even though she wasn't able to thank you herself with her words, I know she appreciated it, too.

I am so glad that she was given this opportunity. I know it has helped boost her confidence and testimony, and it certainly has helped mine. I have learned, once again, that I can never deny my daughter an opportunity to do anything. Autism does not limit her, it only makes things more challenging. As parents, we have to be willing to help our kids overcome obstacles to reach their potential. What seemed impossible to me before is now possible because of hard work and prayer. I'm so proud of her, and look forward to more opportunities for her to grow as she gets older. Next on the list: girls' camp this summer!  

Give your Child Time to Blossom

 

I love gardening. I'm not a professional, but there's just something so exhilarating about seeing growth and progress over a period of time, and knowing that my own hard work helped create that—I water, I fertilize, I tend, I protect, and I let mother nature do the rest.

Last spring, I was really ambitious. I bought 8 different berry bushes and had them shipped to my home. They were basically sticks with roots attached. I planted them in pots with good soil, watered them, and watched all summer as they slowly took shape. The vines began to grow, leaves sprouted, and we didn't get berries this year, but I hoped that I could keep them alive during the winter to see them grow again. I worried when they lost all the little leaves and appeared to be dead in their pots, and hoped my investment wasn't in vain.

Last fall, we bought three fruit trees: a peach, pear, and orange to add to our young pomegranate tree. We made sure to plant them very carefully with room for the roots to grow. They lost all their leaves during the winter. I could only hope that they would thrive again in the springtime, and the only way to find out was to wait.

So I waited through the colder days of winter and watched. Many days and even weeks went by where I didn't give those bushes or trees a single thought--they all sat there lifeless in our yard. Toward the end of January, I went outside to look at the berry bushes in pots and noticed their roots had extended into the dirt below through the drainage holes. They were still growing, though they appeared completely dead. The proof was in the roots. And soon after that, our fruit trees grew tiny buds. Life was still happening despite all the deadness. To me, it is a miracle, this cycle of life in nature. And with our own children, we can see miracles, too, though at times, we might feel like their progress is dead as the winter.

 

Even when it seems like your child is not making progress, remember: growth is still happening. After the dead of winter, a tree will blossom. Give your child time to blossom.

Parenting special needs children means you have to give great care and attention. Yes, mother nature is helping, but the watering, fertilizing, and tending are often doubled--and it's often done by more than just the parents—doctors, therapists, special teachers, case workers, specialists, extended family can all lend a hand. But the biggest factor in change will be inside themselves--there's only so much you can do. We can give them roots, but they need to blossom on their own.

My three children have each needed extra care. My oldest, on the autism spectrum, had to be taught many times to learn a new skill. While other children might blossom after a gentle gleam of sunlight and a trickle of rain, she would need full sun and rainstorms. I still remember when she was a little toddler and motor skills were a challenge. After intense physical therapy and working with her at home myself, she blossomed into a walking girl at 20 months old. No matter that she did it later than her peers--she has her own life cycle she's following, and though it was hard for me to be patient, I had to let her bloom on her own time.

Soon after her walking took off, I began to notice that other body movements did not come naturally to her. Stepping off of curbs or walking down stairs was frightening to her. At the playground, she couldn't figure out how to climb a small ladder to get to the slide. So I worked with her, every day, putting my hand over her hand, then my hand over her foot, guiding her, teaching her the movement of climbing a ladder until it became natural to her. There were dead periods during this time, where I felt like my efforts were in vain, like I was looking at a dead tree with no life or hope of progress. All I could do was hold on to the hope that the little things I was doing with her every day were somehow adding up inside that tiny body of hers, and that when the winter of this learning season passed, she would bud and bloom. And one day, it happened--she climbed the ladder without my help. It was so sudden, quite like how the blooms on a tree seem like they would never come, but then one day, they're there. Growth was happening, on the inside. It was up to her to bloom, and she did.

A similar experience happened with my youngest, who was born with a cleft palate. We were told that he would probably not need speech therapy after his palate repair surgery and ear tubes were placed, but soon after his first birthday, his speech began to regress. I feared autism, but it turned out that the ear tubes had fallen out, and after they were placed again, his ENT recommended speech therapy to help him catch up.

So when he was 18 months old, we began speech therapy. I would take him once a week, and watch as the trained speech therapist worked with him and listened to the sounds he would make. We began to see that some of his sounds were coming out nasally--a common thing among children born with cleft palate. The therapist would help him focus on one sound at a time until he could say it right. First it was "D." And after taking him to therapy for months, there was still little progress—a dead spell, where I felt like maybe this therapy wasn't paying off. But then one day, he blossomed. He spoke the "D" sound correctly, like it came out of nowhere. Those little roots were growing all that time. And again, it was up to him to bloom. We helped him plant the roots, and he showed the fruit of our efforts beautifully. After that, there was no stopping him. He mastered sound after sound. Currently, he is in a dead period with the "S" sound. But I don't doubt the roots are growing fine on that one, and that he will blossom in his own time.

Growing a garden is a lot like raising children. It takes patience, planning, effort, care, and nurturing. But most of all, it takes hope, and willingness to never give up on the little things that will eventually grow from all the effort. The blossoms will come and the joy will be great--even greater than the joy of seeing new life sprout in my backyard.

But Julianna Doesn't Have Red Hair, Mommy!

Sometimes Nathan says really cute things, and I want to record them in more than just a little Facebook post. Putting it on my blog means it will be more easily accessible. Today we had one of those moments that I want to remember.

On the way home from picking him up from school, I asked him what color his hair was. I like to ask him this to see if he will say "red" or "orange."

Me: Nathan, what color is your hair?

N: Uhhh....ORANGE!

Orange. Of course. Each of my redheads has always said orange, because it IS orange. Not red. Why do they call them redheads, anyway? I decided to ask more questions.

Me: Orange? Okay, it is orange. What color is Blake's hair?

N: Orange!

Me: Yep! His hair is orange, like yours. And what about Julianna?

N: Uhhh.....BROWN!

Brown? Really? That was a first from him.

Me: Brown? No...her hair is orange, like yours, silly!

N: NO! It's BROWN!

Me: Hmm...okay, Nathan.

We made it to the kids' school and waited for them to walk to the car. When he saw Julianna approaching with Blake, he yelled, "See, Mommy? Julianna has BROWN hair!"

I looked at that tall redhead walking toward us, her red curly hair shining in the sun, and had no idea why he thought it was brown. It is really thick, but other than that, I'm not sure where his color confusion is coming from. Regardless, I think it's cute.

Julianna got into the car, and I told her that Nathan said her hair is brown, not orange or red.

Julianna promptly corrected him: "No, Nathan, my hair is RED, not BROWN! Got it?" She likes to say "got it" lately. And I'm glad she's reached the level of maturity where she knows her hair is red, even though it's actually orange.

N: No, it's BROWN!

J: No, it's RED!

Me: Okay, that's enough. Let Nathan believe what he wants.

The conversation turned to school day topics and that was that. It makes me wonder, though, if I asked Nathan next week the same question, what he'd reply. There's no denying my kids each have red hair!

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!

 

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 this...my 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.

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?

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.

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.

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?

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.

Good News—It's not Autism

I spent over a year fighting the voices in my head that told me my daughter, Julianna, had autism. I was okay with other diagnoses, like developmental delays, speech delays, even sensory processing disorder. The school district, who had been doing the bulk of the evaluations, went along with me, because I think they sensed my trepidation concerning the word autism. Back then, it felt so final, so limiting. So I felt better believing that she could have other things, but not autism.

When she approached her 5th birthday, I became very concerned. Her behaviors were getting out of control. I was losing my ability to care for her properly. Our family seemed like it was hanging by a thread. And the local regional center denied services because she didn't have an official diagnosis of autism on her records, only "autistic tendencies." So when she started her second year of preschool, I told the psychologist to give it to me straight. If he thought she had autism, I was ready to hear it. And more than that, I desperately needed more help for her.

I remember sitting at the table in the conference room of the preschool, surrounded by her wonderful teachers, the school director, the therapists, and the psychologist. I already knew why we were meeting: we were finally going to put that word "autism" on her IEP, on her official reports. It would be her primary diagnosis. But I didn't realize how much it would hurt me, even being ready for it. The psychologist began reading his report, and when he mentioned autism as her new diagnosis, it stung me. Even knowing it was coming, it hurt me. It felt like I had just been pushed hard, in the chest, like the breath had been knocked out of me. I fought to hold back the tears, but it was pointless. I sat there, the parent, the representative of Julianna at this meeting, and just cried.

I've cried at so many IEP meetings, and I've always wondered how it makes the others at the table feel. Are they uncomfortable? Is it awkward? Do they really understand why this is so hard to hear? To sit around a table and hear all these things said about your child—global delays, 1st percentile, mild mental retardation, gross motor delay, fine motor delay, speech delay, the list goes on. And now autism. But that word was key to getting her the help she needed, and the peace our family was seeking.

I've come a long way since then. That was 7 years ago, and just this week, I began the same process with my youngest child, Nathan, who is almost 3. He was born with a cleft palate, and a duplication of chromosome 22, which puts him at risk for all kinds of delays and disorders. He's been watched closely by a team of specialists since his birth. He's had the surgery to repair the palate. He's doing speech therapy and progressing well. But because of our family history, I had to know—was autism going to be added to his list? I didn't really think it was possible for him, but considering what I'd gone through with my oldest, I didn't want to enter any type of denial phase. I wanted to face it, right away.

He was evaluated by our regional center, the same one that denied services for Julianna year after year. I sat in the waiting room with other parents seeking answers while Nathan played with the Tonka trucks. A psychologist walked into the room with a clipboard and began studying one of the children, taking notes. I stared at that man with the clipboard and realized he was the one who evaluated Julianna over 6 years ago when I was desperate for help and answers. He was the one who told me she just had PDD-NOS, and that I should be very lucky, because she would have a bright future. He's the one that caused me to drive home on a cloud, feeling happier than ever, feeling like Julianna was better than those kids that needed more services. He's the one who wrote a report that the school district would later call "science fiction," and would lead to me fighting the regional center with everything that I had, and winning. Seeing his face again brought back chills, and I was so glad he was not the one evaluating Nathan.

A nice woman called his name from the doorway, and we walked back to her office. After a series of questions and tests, she said Nathan was just fine. He did NOT have autism. I was expecting this, and didn't feel relieved. All I could think about was my daughter, Julianna, who still had autism.

When I got home, I posted the news about Nathan on my Facebook page, and naturally, many people liked the post, and commented things like, "What good news!" And they're right, it is good news. Good news for Nathan. Good news for our family.

But I couldn't stop thinking about Julianna. She still has autism. She's still dealing with anxiety, motor and vocal tics that she can't control, sensory issues related to food and clothing and smells and sounds, problems communicating and making eye contact, a strict schedule of therapy, a fear of swimming and water. And that's okay. She's still good news to our family. And if you asked her, she'd say there was nothing wrong with her. Sometimes I ask her, "Do you like being Julianna?" She always answers with a little laugh, "Yes, I like being Julianna."

Yes, I am happy Nathan doesn't have autism. But even if he had been given the diagnosis, I would have felt the sting, the loss of breath, just like I did 7 years ago. Hearing the word is hard—but the healing does come, slowly. I still ache for Julianna, and know that despite her challenges, she is also good news in our family. She is teaching us, and others all around her, about kindness, tolerance, acceptance, and love. And we are blessed. I don't fear autism anymore. I am embracing it. It's not final or limiting anymore. It makes her who she is, and our family is better because of it.