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

3 Ways Caregivers Can Deal With Trauma

When you hear the word "trauma," what first comes to mind?

This word is usually associated with things that are horrible to experience, such as a car accident or the sudden death of a loved one. What follows are emotions like shock or denial because of the event. Your life could have been going along smoothly, and then suddenly something happens that literally turns your world upside down.

Have you ever considered that as a caregiver to a child with special needs, you have experienced trauma, repeatedly, for weeks or months or years on end? Events that have turned your life upside down, have stopped you in your tracks, have caused shock, denial, fear, anger, resentment, or grief?

Honestly, it wasn't until I helped to organize a meeting for a local caregiver support group that I realized how much trauma I have experienced as a mom. I went through years of uncertainty trying to figure out my daughter's diagnosis, trying to cope with the fact that her path would be different, trying to get her the right help. Hours upon hours on the phone, going to doctor after doctor, trying diets, evaluations and assessments, dealing with challenging behaviors where I had no idea what to do, grieving over the uncertainty of her future. And then with my second child, I went through the same uncertainty and fear as I sought his medical diagnosis so he could receive the right treatment. And then with my youngest, it was the shock in the hospital, hours after his birth, where we were given his diagnosis, and I knew nothing would be what I imagined for him. These situations I've faced as a mother, if you really look at them, have been traumatic--they have brought me to my knees and kept me from experiencing what some might call a more "normal" motherhood experience.

An article I used for that caregiver meeting explains trauma so well. The author, Eileen Devine, LCSW, shares a story of how one of her clients describes her life that week with her daughter who has behavioral challenges associated with fetal alcohol syndrome. Devine says, "Although the week had been particularly difficult, in reality the last two years, overall, had been incredibly difficult." When I read this, it really struck me--I realized I have been experiencing traumatic event after traumatic event for YEARS. Yes, some weeks were harder than others, and some days, but if you add it all up, it equaled a long stream of traumatic events that, when I actually stop to think about it, can't even believe. How have I even made it through all that I have? Am I really doing okay, or am I just in "survival mode," going day to day but not considering how these traumatic events have really changed me or affected me in some way?

I think the difficulty that caregivers face when it comes to trauma is that once that big event happens--the one that changes things forever, NOTHING EVER SLOWS DOWN. You are suddenly given this new road to take with your child, and you have to keep going somehow. Your child is depending on you to obtain the right treatment, services, school placements, medical care, therapies--the list goes on. When do you ever stop to think about how what you are doing as a caregiver is really affecting you--how these traumatic events are piling up, day after day, year after year?

Devine says, "I don't say this lightly, but in parenting children whose brains work differently, each is separately living through, on a daily basis, a traumatic event. It's no wonder that these parents frequently describe being depressed, anxious, and on-edge. It's no wonder that they might find themselves physically ill much of the time, with ailments that rarely seem to abate or resolve...Many parents are left wondering how they ended up in such a dark place, and how they might ever extract themselves again."

It's important to point out here, that this "place" Devine mentions is actually what she calls "caregiver burnout," which I will discuss in a future post. But I share her thoughts because I want you as caregivers to see how these traumatic events really do add up and can lead to this burnout.

Another important point I want to stress here is the sadness I feel when I consider the fact that the trauma I have experienced in my life has largely been from the health challenges my children have faced. I don't like thinking about it that way--that because of the challenges my children have been given, I now have gone through serious trauma. This negative view is not something I want to adopt as their mother. I think this is why it's crucial that we see our child for who they really are and not just the disability or health concerns--they are our children first. As caregivers, we are tasked with helping our children navigate life as they also deal with the symptoms that come from these diagnoses. This asks a lot more of us as parents, but what parent isn't willing to do everything they can to help their child? Make sure you are seeing your child first and the diagnosis second so you don't fall into anger or resentment, or blaming your child for what you have to go through with them--it's NOT their fault.

I remember the trauma I went through after my youngest had his palate repair surgery. It was the first time any of my children had had surgery, so I was a wreck, to say the least. It was rescheduled twice because of emergency operations that needed to be performed by his surgeon, so we were pushed back by several months already. The day finally came, and it was at a horrible time for all of us--right in the beginning of a new school year. The surgeon didn't give a lot of details about how the surgery was going to happen, and he explained that the recovery was usually just one day in the hospital. I really didn't think it would be too bad, based on what he told me, and based on the fact that I didn't know anyone who had been through this before--all of this was very new to us.

The surgery was longer than he said it would be--my husband and I waited in the hospital with all the other worried parents and families until our son's number moved down the screen. And when we finally got to see him, I nearly broke down. His face was swollen and he had to breathe with a tube. He looked absolutely miserable and I so wished I could take all his pain away. I asked the surgeon more about how the repair was done. He actually drew a picture, showing that he removed both sides of the existing palate in his mouth that never fused together, sewed them together down the middle, then stretched it out to the gum line, inserting stitches all along the gumline. So he had stitches down the middle of his palate and all around the gums. The very thought of my baby going through this made me cringe. But I tried to remain hopeful--he said the hospital stay would only be one night and he would be feeling much better.

Well, that didn't happen--one night turned into three and my little baby still didn't want to eat. When he finally got at least one ounce down from a bottle, the doctors reluctantly sent me home, but told me to watch for signs of dehydration. Those next few weeks were rough getting him to eat, and I came close to bringing him back to the hospital. But we got through it, and with the exception of a small fistula, or hole, in his palate, (which was whole other traumatic experience in itself) he is doing just fine.

Those days in the hospital with him were certainly traumatic. Every time I had to return for follow-up appointments, I had to drive by the hospital. Just the sight of that building triggered horrible, fearful feelings. It took about 2 years before I could drive by it without fear creeping inside of me, taking me back to those long, difficult days trying to get him to eat. Add to this the dozens of other traumatic experiences I've had with him since then and you have a recipe for disaster. Trauma after trauma after trauma, with no time to regroup or "go back to normal." My normal was going to be filled with trauma and there was no escaping it.

Going back to last week's post about accepting our role as caregiver, you could add one more point to the list--accepting the fact that trauma will be a part of your life now. But how can we deal with trauma in a way that won't lead to burnout? Here are some things I think helped me get to where I am now:

1. Talk about what you are experiencing with others--this can be a great support system.

I mentioned the hours I spent on the phone trying to get help or answers for my daughter earlier in this post, and that is no exaggeration. Those hours on the phone weren't just with doctors, teachers, or specialists--they were also with my family and friends, who became a huge support for me during that time. I pretty much talked everyone's ear off during those early years--I was trying to figure things out and process what was happening, and I was lost! Talking openly about my struggles (or what I would now call "traumatic events") with others is really what saved me and gave me the support I needed. If you aren't talking to others about what you are facing on a regular basis, start now! You can't keep all of this inside. Writing about it is another great tool.

2. Don't dwell on the past too much--look at where you are now.

There can be a lot of painful memories associated with being a caregiver--memories that, if you dwell on them for too long, might not allow you to appreciate where you are currently. I did a lot of journaling, and then blogging, back in my earlier days as a mother. When I read those entries, the tears start flowing, but not because I am sad--because I am grateful for how far I've come. I can look back and see what I've been able to get through, and it is empowering to me. It gives me confidence to keep going forward. Maybe you are right in the middle of those traumatic experiences and can't begin to imagine looking back yet--keep going so you can. And even look back on yesterday, or a week ago, and see what has changed. Try to find those little blessings and miracles that got you to where you are.

3. Make sure to take some time for yourself.

Of course this is easier said than done. But it's absolutely essential to dealing with the many traumatic events that caregivers face on a regular basis. For me, in those earlier years, it was exercise. I had to go to the gym or go for a walk every day to feel okay. Figure out what will help you deal with your situation and make it a priority. You are important, too!

The traumas that I face as a caregiver now have calmed down, for the most part, or maybe I have just learned to adjust to my "normal." I continue to talk to people, to write. I continue to look back on what I've been through and realize how far I've come. And I continue to take time for myself--right now, it's pursuing a graduate degree.

Some questions to consider: What traumatic events have you experienced as a caregiver? What has turned your life upside-down? What can you do to deal with traumatic events in a healthy way?

As caregivers, we can't escape the trauma that will come into our lives, but we can view them as stepping stones on our journey as we learn how to care for our children.

Next week I will share my thoughts on a new topic related to caregiving: relational stress.

Link to article by Eileen Devine: Managing the Toll of Caregiver Trauma

6 Ways You Can Embrace Your Role as a Caregiver

When I think about all the moments that have defined me as a mother, there is one that stands out above all others. This one moment was a realization I truly needed to move forward and face the challenges I knew were ahead of me.

It was when I was in the hospital, about a day after my youngest son was born. We had already been told about his cleft palate and had met with many doctors to go over what his treatment plan would look like and the next steps to take. We had spent the majority of our time trying to figure out the best way to feed him, and once I saw that he could to suck on a pacifier, we fed a tube syringe with formula through the small hole on the Nuk pacifier and slowly released the formula into his mouth from the syringe. It wasn't true suction because he had no palate, but he was able to imitate sucking as best he could with the pacifier, and he was eating. We were all so relieved to find something that would work for him, and the nurses said I could finally bring him to my room to stay with me. 

I got to be with my new baby in my room--just me and him. I got to hold him and love him the way I had wanted to since he was born. Things had been so chaotic since his birth that I hadn't had time to stop and realize what this meant for me as a mom. And it hit me, pretty hard in that moment--I now had three children, each with various needs. My husband and I had spent my entire pregnancy praying that this baby would be healthy and normal, and he wasn't--at least that's how I felt in those early days. We longed to just love a baby with no extra needs--and now here I was, with another baby taking me on a completely new journey as a mom. I knew nothing about cleft palate, about palate repair surgeries, about exclusive pumping, about feeding with special bottles, about how many doctor appointments he would need. I wondered why my Heavenly Father would send me a child with these challenges knowing what we had already been through with our previous children. Could I do this? I fell deep into the "why me" line of thought, and I knew that wasn't the right solution.

I continued to ponder on my reality as I fed my new baby with the tube-syringe method. He took to the method so gracefully--I would say it was a miracle! One of the doctors came in and remarked that he had never seen a mom of a baby with cleft palate learn so quickly to adapt and feel comfortable with feeding. The only words I could reply (and I've written about this here) were, "I'm not really sure. I guess it's because I'm his mom."

As soon as I uttered those words, all the "why me's" vanished. I no longer wondered why our prayers weren't answered, because they were. I knew Heavenly Father gave me this child because He knew I could take care of him--I was prepared because I had gone through challenges with my older children--except this time, I wouldn't have to go through any searching to find answers--they were all given to me before he left the hospital (for the most part.) I left that hospital with a team of people behind me who I knew would help me any time I called--I didn't have that with my first two children. Things were going to be okay. This was the moment that defined me as a mother--I now saw the unique role that I was given because of my children. And though I wouldn't have used this word back then, the word I want to use now to define that role is that of a caregiver. 

What is a caregiver? This word isn't always used when referring to a parent of special needs children--more commonly, it's used in reference to caring for an elderly person. But it is exactly what we are--we are caregivers. The best definition of caregiver that I can find comes from the churchofjesuschrist.org. It says:

"A caregiver is a person who provides regular care for someone who is unable to meet some or all of their own needs. Often the person receiving the care is a family member living with a physical or mental disability, chronic illness, or effects of old age. The time commitment required to care for such individuals may range from a few hours a week to 24-hour care. 

Caregivers are often required to balance work, church, and other family responsibilities while at the same time attempting to provide individual care to a loved one. While providing care is often a very rewarding and enriching experience, the demands of continual care can also cause worry, exhaustion, financial stress, anxiety, and fatigue. Caregivers may have needs that are not visible to others, and they may also be reluctant to ask for help. Caregivers may have a higher risk of stress-related depression, anxiety, substance abuse, or physical health issues. They may also experience grief, resentment, or anger over the loss of their hopes, expectations, and even dreams. Their day-to-day lifestyle, freedom to do things they want, and goals for the future may all be different from what they once expected."

Does this describe your role? Are you caring for someone who cannot meet all of his or her needs? Are you spending a large amount of time caring for this person? Do you find it difficult to balance your role as a caregiver with other aspects of your life? Do you struggle to ask others for help? Do you have stress or anxiety or other health issues? Or do you have anger, grief, or resentment over the loss of your expectation or dreams (of yourself or your child's?) I can certainly answer yes to all those questions. 

In those first few days of my youngest child's life, I was able to see clearly what my role was going to be from that point forward. Asking "why" wasn't going to get me anywhere. I love this thought I came across recently from a talk given by M. Joseph Brough: "Frequently, our first reaction to hard things is “Why me?” Asking why, however, never takes away the hard thing." The only way I could help my child in the way he needed me to, and to continue caring for my other children, was to embrace this new role, and embrace it fully. 

Now that I can look back on the times I have had to embrace each new role I've been faced with as a mom to my unique children, I can identify what has helped me to accomplish this. That's not to say that there still aren't times that I want to run away and take a long vacation because the pressure can be so intense at times--but even feeling this way, I would never want to change the experiences I've had because they have made me who I am. Here are some ways I have "embraced" being a caregiver.

1. Accept that your child has a health condition or disability.

This was probably one of the hardest things, at least for me. I spent too long in denial over the behaviors my daughter showed in her early years. I just wanted her to be perfect, and I really thought I would never be able to care for her if she wasn't. I wanted things to be easy and more predictable--I wanted to read the normal baby books and follow traditional milestones. I think in some ways, as she grows older and reaches new stages, I find I am having to accept things all over again, and it's hard. But without acceptance, there is no way you can fulfill your role as a caregiver and provide the care needed for your child. Without acceptance, you could find yourself stuck in resentment or anger, which will keep you from loving your child the way he needs to be loved. Acceptance means you are embracing, with open arms, whatever may come.

2. Learn everything you can about your child's disability or health condition.

I think this goes without saying because most parents that I know who have a child with any kind of disability or health condition become experts in that condition--so much that they sometimes know more than doctors! I remember when my neighbor told me she thought my daughter had autism (which I wrote about here). After she left, I cried, for a long time, because, let's be honest--I was scared. But then I went straight to the internet to learn everything I could about autism, and it was the first time I took steps to embrace the role I would have once she received her initial diagnoses. Learning about the health challenges of your child means you aren't afraid--you are arming yourself with knowledge, and this means you are willing to do whatever it takes to care for your child. 

3. Don't compare your child to others.

Comparing your child to others is never good, especially when you have a child with a disability or health condition. Celebrate the milestones--big and small--and on your child's timetable only. Throw away the normal baby books! Keep working with your child--follow the advice of doctors, therapists, and don't give up--you will see progress. And when you find yourself in a conversation with other parents bragging about what their child can do, praise your child for what he can do as well, even if it doesn't match up. Doing this will give you more confidence in your role as a caregiver and help you to embrace it for what it is.

4. Be willing to acknowledge that your life will be different now.

When your child receives a diagnosis, you are suddenly thrust on a new path, and, like the definition of "caregiver" mentioned above, you often have to let go of the hopes and dreams that you might have had for your child. Now I want to be clear--this does not mean that you can't set goals for your child, or work hard to help your child reach her potential! It just means you will have to reframe them in a way that is individualized to your own child's strengths and needs, and that's okay. Once you accept this fact, you can more fully embrace your role as a caregiver. In a former article I wrote for The Mighty, I said, "As special needs parents [and I would change this to "caregivers" now], 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 will make new friends along the way."

5. Do your best to stay positive.

This will do wonders for you! I know it's so hard to keep a positive outlook when the days are long and the days turn into weeks and months and years and you feel like there is no end in sight, but there is! It's all about perspective. Some words from a very wise man, Neal A. Maxwell, who suffered from leukemia: "glimpses of eternity can help us to travel the next 100 yards, which may be very difficult.” The way I see it, you can either take the bitter road or the better road. Which one is going to help you be the best caregiver for your child? Which one is going to help you embrace the role that you are in and help your child reach his full potential, whatever that may be? Yes, those next 100 yards may be difficult, but do it with an eternal perspective in mind, and realize that what you are actually doing is serving your child in a way that no one else can--your child needs you. 

6. Don't think you have to do all of this in one day.

I decided to add this last step because, let's be real--no one is going to wake up tomorrow feeling like they've accomplished all of these things--it takes time. It's normal to go through stages after your life changes so drastically. I certainly did! I know for a fact that if I hadn't been through the challenges with my two older children, that when my youngest was born with his own challenges I would have completely fallen apart! And you know, I still do sometimes, and that's okay. What matters is that we keep going because we know our kids depend on us. 

That day in the hospital was a turning point for me as a mother--the newfound courage that somehow made its way inside me as I uttered those words to the doctor, "I guess it's because I'm his mom," gave me the confidence to move forward in my role as a caregiver. I knew that I had the skills to care for my children, and if I didn't, I would be able to find the answers--and I have. Every step of the way I have been guided as I've been a caregiver to my children. 

Maybe you are still struggling with denial, or anger, or sadness. That's okay. You will know when you've reached that turning point and have fully embraced this role as a caregiver to your child. 

In the coming weeks, I want to share my thoughts about 4 other topics related to being a caregiver that I have researched for a caregiver support group in our local area: they are trauma, relational stress, compassion fatigue, and caregiver burnout. I will discuss each of these, one at a time, to give more insight into how I've dealt with these in my experience as a mother. I hope you will join me so we can learn together! 

Article for ACPA about Nathan: "Purpose Behind the Cleft"

Has it really been over 2 years since I've blogged on here? Wow, being in college again really makes writing a challenge. I thought I would share a recent article I wrote for the ACPA, which is the American Cleft Palate-Craniofacial Association. It was really well received on their site, and I'm so glad I got the opportunity to share my story and spread awareness about cleft palate, and how it has led me to pursue speech and language pathology. Here's the link to their site Purpose Behind the Cleft, and I have posted the article in its entirety below.

A little over 6 years ago, my life as a mom changed forever. Our two older children each had their own medical conditions that put us to the test, and we were hoping for a healthy, normal baby throughout my third pregnancy.

Our son Nathan was born full term, but he couldn’t nurse and had mucous discharge coming out of his mouth and nose. The nurses took him away for observation, and I sat with my husband in the cold hospital room, listening to the heart monitors beeping, wondering what could possibly be going on. Hours later, the nurses returned to tell us the news: our baby was born with a complete bilateral cleft palate. I knew nothing about clefts, other than that it was a facial difference and that I had seen commercials about it.

Before we knew it, we were being taken to the NICU. A whole team of doctors had arrived to run tests and ask me questions. One of the nurses wanted to show me his cleft palate. I was scared to look. She opened his tiny mouth as far as she could, and I saw it–a huge hole in the top of his mouth. They explained that he would need surgery to correct his palate before he turned one. I felt comforted by the team of doctors and professionals supporting us from the beginning. I knew we wouldn’t be doing it alone, even though we were venturing into unknown territory.

Nathan saw doctors and specialists on a weekly basis at the ACPA Approved Team at Loma Linda University Health group–a plastic surgeon, ENT, and the entire craniofacial team. The speech therapist and nurses helped me through those early months and made sure he was developing normally. Genetic testing was done, and it was discovered that he had a small duplication of chromosome 22, which was very rare, and which likely caused the cleft palate. He had the palate repair surgery at 9 months old, and after the surgery he developed a fistula, or small hole, in the opening of his palate. I was terrified that we’d have to do the surgery again, but the plastic surgeon recommended waiting to see if it would close on its own. I am proud to report that as of today, it is a VERY small hole, which Nathan really likes – it allows him to make his special “clicking” sound.

Our team at Loma Linda University was there for me whenever I had a question, and they made sure Nathan got the best care possible. Nathan began speech therapy at 18 months old to correct articulation and catch up on language development. I got to sit in on his weekly sessions, amazed at the progress he made. Speech therapy seemed like magic to me! I started thinking about going back to school, and I looked into speech therapy. I was lucky enough to finish a 2nd bachelor’s program in communicative disorders at Utah State University and then receive acceptance to a master’s program in speech and language pathology at Idaho State University, where I just finished my first semester.

Now that I look back on the early years with Nathan, I can see purpose in everything. Yes, we wanted a healthy, normal baby, but you know what? He was healthy, and he is normal. If it weren’t for Nathan’s cleft palate, I would never have been able to sit in on speech therapy sessions and see how wonderful that profession is. I can’t wait to give back to other children when I graduate–to give back to children who are like my Nathan.

Review of "Fidget Sensory Armband" by PatchesProducts

One of the best things about having a blog and the great opportunity to write articles for different websites is the individuals who contact me. One such mom reached out to me a few weeks ago after reading an article I wrote on "The Mighty." She wanted to share her product with me, and I agreed to write a post on my blog for her. Win win!

Julie, from Patches Products on Etsy, was kind enough to send me THREE of her fidget sensory armbands--one for each of my kids. When the package arrived, I was so excited to try them out! They are made from a very durable fleece and have sequins on one side for the child to rub up and down. Doing this is a great way to calm the child and allow them to redirect their sensory issues. They fit snugly and comfortably on my children's wrists, and even my own! My kids were amazed at how the sequins could move up and down, and so was I!

The thing that really impressed me was how Julianna, my daughter with sensory issues and autism, reacted to the armband. We have tried many different products over the years to help her with sensory issues, and none have really worked. Well, these fidget armbands did the trick! After putting hers on, she spent at least an hour massaging the sequins back and forth and watching the color change from gray to black. Just wearing the armband that long is a huge deal for her--she never likes to wear jewelry or headbands or anything more than regular clothing because of her sensory issues. She liked the armband so much that she asked to wear it to school and church, and on our bike ride that we took as a family that day.

I highly recommend these armbands if your child needs redirection or calming during stressful times. Not only are they comfortable and fun, but they can be worn with clothing as a great accessory! And they really work. She has other products as well! Thanks, Julie, for sharing your great product with us! I even passed one along to a friend for them to try!

Go check out her page and get yours today! Patches Products.

To Medieval Times--Thanks for Making Our Experience Easier

Day 1 of our little family vacation: check into our hotel right next to Disneyland, kill some time at Downtown Disney, and go to Medieval Times in Buena Park.

Going to a new place with a child on the spectrum is always a challenge. But I have to say, Medieval Times made the experience very easy.

I knew that we needed accessible seating in case Julianna was overwhelmed (guess what--sensory issues are REAL). I told the nice event staff member by the handicapped access gate that my daughter has autism, and that the sights and sounds might be too much. Without hesitation, he took us to the indoor stadium so I could decide what might work best. I chose an area, and he switched our seats. He even let us go in before the rest of the crowd. And once we were seated, he brought Nathan a booster seat without being asked.

When the show started, there was loud music and strobe lights flashing. Julianna covered her ears and began to cry. I reassured her that everything was okay and that the exit was right behind us now. I then thought that I needed to relate this new experience to something she's done before. Moms really do have intuition, because instantly I knew to say, "Julianna, this is just loud, just like a movie." She paused, uncovered her ears, and said, "Mommy, you mean this is like a movie?" She calmed down.

Next came the meal (eaten with no utensils, of course). Garlic bread, which she ate. A huge piece of roast chicken, tomato bisque, corn on the cob, and a baked potato. She only ate the garlic bread, and I knew she was starving.

I asked our server if she could bring any extra bread, and she was happy to do so. I explained that Julianna has many food aversions and would only eat the bread. She brought two more pieces of garlic bread. No more hungry Julianna.

When it was over, we thanked to event staff employee for the great seats. We thanked our server for the excellent service--I even left a note. What could have been a stressful evening for us turned out to be great.

It made me think that sometimes, it's hard to ask for help. But when you have a child with special needs, you have no choice--extra needs usually means extra help. So it's always appreciated when employees show they care about making your experience easier.

Thanks, Medieval Times! Tomorrow and Thursday: Disneyland! I will make sure to take mental notes on things I can share with you all.

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!