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.

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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To All Mothers of Special Needs Children on Mother's Day: I Know How You Feel

Being a mom is nothing like I expected it would be, but I wouldn't change it. What I have learned as a mom has transformed me into a stronger, more confident person. But motherhood is more than what I've learned--it's what I've felt. Motherhood has brought out more feelings, more emotion, than I ever could have experienced otherwise. I have three very special children: a child on the autism spectrum, a child with a rare blood disorder, and a child born with a birth defect. This Mother's Day, I want to write a tribute to all those moms of special needs children, because even though our challenges have all been unique, I feel you.

I know what it feels like to wonder why your child isn't hitting milestones, and to wonder if you didn't do enough to help your child reach them.

I know what it feels like when you wish you could do more for your child, but also feel like you're not doing enough.

I know what it feels like to compare your child to others, even though you know you shouldn't.

I know what it feels like to be afraid of the behaviors your child is displaying, and wanting to hide from the world. Fear is a powerful emotion.

I know what it feels like when your child gets stares and whispers in public. It hurts--so much that it often ends in tears.

I know what it feels like to take your child to doctor after doctor, hoping you will get the answer this time, but also secretly hoping you won't, because you don't want your life to change, or your child's future to be different.

I know what it feels like to sit in waiting rooms at doctor's offices, looking around at all the other parents like you with special children, and realizing that this is my new life, my new world.

I know what it feels like to hear a doctor give your child a diagnosis, and having your life change in an instant.

I know what it feels like to cry yourself to sleep at night, wishing you didn't have to face all these challenges with your child, wishing you could take it all away and just have a "normal" life.

I know what it feels like to have your hope taken away from you.

I know what it feels like to be on the phone--a LOT.

I know what it feels like to have no one understand your situation.

I know what it feels like to send your child off to school, and hope and pray they have a good day.

I know what it feels like to have a child with mysterious and frightening symptoms--so mysterious that your own pediatrician can't tell you what it is--the helplessness.

I know what it feels like to have an out of control household--so chaotic that you often surrender your desire for any control at all, because nothing you do works.

I know what it feels like to have a baby whisked away from you right after birth for testing, to be brought to the ICU because something is wrong. All you want to do is hold your new baby, but you can't.

I know what it feels like to wait for your baby to be observed, and watch the hours tick by, having no idea what could be going on.

I know what it feels like to experience uncontrollable guilt after hearing your child has a birth defect, or any other illness or disorder. What did I do wrong? What did I not do better?

I know what it feels like to have your child go through surgery. It hurts to see your child suffer.

I know what it feels like to be tired--physically, emotionally, and mentally--so much that your body hurts, and you wonder how you will possibly make it to tomorrow. But you do.

But you know what? Even with all the hard things us special needs moms go through, I also know what it feels like when you see your baby smile for the first time.

I know what it feels like when your child does reach that important milestone--even if it wasn't accomplished on the bell curve for "typical" children.

I know what it feels like to suddenly see your child for who they are--the moment when their diagnosis doesn't matter anymore. It's a liberating feeling.

I know what it feels like when your child achieves a new skill that took days, weeks, months, maybe even years to reach, and knowing that all that hard work really was making a difference. You just couldn't see it or believe it until now.

I know what it feels like when your child makes friends at school--real friends. You feel on top of the world.

I know what it feels like to fight for your child--something you didn't know you could do before.

I know what it feels like to see this motherhood thing for what it really is--a selfless path of learning and self-discovery through the eyes of your child--an opportunity to live with a love so strong that it's indescribable. No challenge, no disability, no health issue can take that feeling away.

Maybe your motherhood story wasn't what you expected, either. You are strong even if you don't feel like you are, because you are doing something right now to help your child achieve their greatest potential. Yes, it may cause you to feel weak and tired from all the extra tasks required, but you are already strong because you are a mother.

To all the moms of special needs children, I salute you and celebrate you this Mother's Day. You are doing a great job. And remember, you are not alone. I know how you feel, just like many others like me do.

Celebrate Our Differences

I love going on bike rides with my family. It makes me feel like we're so...normal, even though we are far from it.

No, that's not my family in the picture. But don't they look so normal and perfect? I wonder what secrets they are hiding.

Today we rode to a nearby park. When we got there, Nathan ran around kicking the soccer ball, Julianna went to the swings, and my husband and Blake played basketball. So...normal.

After a little while, the kids headed for the playground where there were some cute little girls playing with their dad and grandma. They seemed so sweet and perfect. Suddenly, Julianna leaned to me and said, "Mommy, that girl doesn't have an ear."

I thought that wasn't possible. The kids continued playing, and this beautiful little girl slid down the slide near me. As she ran by, her long black ponytail bouncing, I saw that her ear was very small and disfigured, as well as the side of her face, slightly. She turned to look at me, smiled, and I smiled back.

I said to Julianna, "You were right. Her ear is different. But that's okay. Everyone has things that make them different. You do, too."

It made me think how much people try to look normal, to fit in. Why is that? What is wrong with being different? What is wrong with talking about our differences? I wanted so much to ask the dad and grandma about their little girl, but then I felt like I'd be pointing out her difference, so instead, I smiled at them, wishing they could read my mind and know that I get it. I know what it's like to have kids that are different.

If they only knew that each one of my kids has something that makes them "un-normal." If they knew that my daughter had autism, that my son was born with a rare blood disorder, that my other son with a birth defect, probably like their little girl was.

Who even has a normal family anymore? I think it's time to celebrate differences and embrace what makes our families unique. Hiding behind the differences only keeps others from connecting to the very people that could be a blessing in their lives. This family could have been a blessing in ours, but I didn't say anything, and I can only hope that we see them again.

I have learned that living in the open is much more freeing than hiding what I am facing as a parent. The friendships and relationships I have made as a result are priceless. Normal is so overrated.

How Would Your Children "Rate" You?

I remember it was about a year ago, at the end of another long, draining day as a mom. The bedtime battle was about to begin. Interesting how much energy children have at bedtime, and how much energy I have to muster to make it happen. Because stress accumulates, much like a teapot kettle about to whistle, I typically blow off steam at my children during bedtime. I'm tired, and they're not, and I just want time to myself to let my brain recharge for the next day.

On this particular day, though, I must have let off so much steam that I felt bad, guilty. I felt like I was harming my children through my anger and stress, and they didn't deserve it. I could do better, I thought. I NEED to do better. Don't moms always think this about themselves? Guilt is such an easy emotion to grasp, at any given moment.

Once I finally got them settled down, I suddenly had the thought: Being a mom is like my "job" right now. It's my position I have to fill, every single day, and it's a big one. But it's not like a typical job one might have outside the home, where you have a boss watching your performance and giving you regular critique. If my kids were to "critique" me, or rate me, what would they say? I wondered. They are watching me, like a boss might, right?

Given that this day was already a flop, in my opinion, I was scared to ask them. So I decided to ask them individually. I went to my middle child, and asked, "Do you know what it means to rate a person, like on a scale from 1-10?"

"Yes, I know what that means," he replied.

"Okay, so if you were to rate me as a MOM, on a scale of 1-10, what would you give me?"

Before I could even cringe or back away, this is what he said: "10!!! Mommy, you are a 10!!!" He held up both of his hands to show his 10 fingers for even more emphasis.

My eyes welled up with tears. What did I do to deserve this? I wondered. Doesn't he remember how mean I just was to him? All the yelling and demanding that he get in bed so I could get a moment to myself?

I wiped the tears from my eyes and asked, "R-rr-really? You think I'm a ten?"

He smiled again and flashed those fingers, dancing them around as I exited his bedroom.

Stunned, I walked to my daughter in the next room. I wanted to make sure she understood what a rating scale meant first (being on the autism spectrum makes this a little more challenging). "Do you know what it means to rate something from a scale of 1-10? So, if I asked you how much you liked, say, ice cream, a 10 would be you like it a lot, a 1 would be not at all, a 5 would be you like it okay. Does that make sense? So, how much do you like ice cream?"

"Umm....a 10," she replied.

"Good. Okay, so if you were to say how good of a mom I was, on a scale from 1-10, what would you say?" I braced myself for brutal honesty.

"Umm...a 10, I think," she said.

"Wow, really? Thank you, sweetie!" I squeezed her shoulder, and peeked into my son's room. He put up those ten fingers with a million-dollar grin. Before I went downstairs, I just had to ask him, "Why did you give me a 10? Even when I'm mean to you sometimes?"

"Because you do things for me, and you take care of me," was his simple response.

I walked downstairs in a haze, feeling on top of the world. My little "bosses" just gave me a perfect rating. Maybe I wasn't messing up so badly after all.

What I realized from this experience is that love matters more than anything else. Moms will make mistakes all the time, but it doesn't mean we don't love our children any less. Our children can feel this love, regardless of the many mistakes we make. They forgive us because they love us. I guess moms need to learn to forgive themselves, and see themselves the way their children do, as "perfect 10's," because we are, in their eyes. Don't be your own worst critic—you are doing a great job. Just ask your children.

Time Out For Women, 2016

For three years now, I've been fortunate enough to attend Time Out For Women, an event produced by Deseret Book. There are speakers and performers on Friday evening and most of the day Saturday. I always look forward to this weekend, because I know that I will come away learning things that will give me strength to go forward as a mother, wife, and individual. So we ventured to Long Beach, which took much longer than planned thanks to a freak thunderstorm during the drive, but made it there safely, ready to soak in all the spiritual inspiration we could get.

Friday night there were two speakers: Elaine S. Dalton, former General Young Women President; Whitney Johnson, an entrepreneur/author/businesswoman; and a female vocal group called Mercy River. Some thoughts that I wrote down from these great women:

Elaine Dalton:

-We need to strengthen our faith--in ourselves and in the Gospel--and go to the scriptures
-keep our focus on the Savior, not on the tumult around us, EVERY SINGLE DAY
-Doctrine and Covenants 121:45--let virtue garnish thy thoughts unceasingly; then shall thy confidence wax strong in the presence of God and the Holy Ghost will be a constant companion
-we need to be virtuous and pure to have confidence
-we can be more than we allow ourselves--don't live below your privileges
-we need to ask the Lord to walk with us through our trials--we can't do it alone
-covenants give comfort, especially when a loved one dies or you have a child with challenges

Mercy River:
-favorite song: "Long for Home;" they also said, one thing we can always do is love our children the way God loves them

Whitney Johnson:
-described her love of sugar and how she's been off sugar for a few months
-talk to God out loud--creates a moment with Him and makes our prayers come alive
-hear His voice--use our ears--singing together can make our hearts beat in unison
-bow down before God--experience time with God with your whole being
-taking the sacrament is an experience with God--use full engagement of your senses
-reach out and touch Him--hugging someone can give a connection and help share the burden of someone else
-because she's not trying to find God in sugar, she's finding him in a lot more places
-Will you give up your "sugar" so God can show up to you?

Saturday we heard from more great speakers and performers. Here are some of the highlights:

Lisa Valentine Clark (author, youtube channel producer)
-read the words to the hymn "Ere the Sun Goes Down" and how it relates to motherhood
-becoming something is more important than the doing
-when we feel like we can't do it anymore, we ask for help--we pray

April Perry and her daughter (local attendee asked to speak; she's also a friend of mine)
-spoke about her experience helping her mother with Alzheimers and how it has taught her children
-ask the Lord how he wants to heal you--heartbreak can heal and bind you closer to the Lord

Laurel C. Day (author/speaker)
-spoke about the atonement
-find safety in his wounds, find comfort in his scars, find peace in his pain
-two kinds of scars--fallen world scars and expectation scars
-don't focus on what you don't have--think of what you do have and find comfort
-when you don't get your miracle, let the miracle be seen through your healed heart

Emily Freeman (author/speaker)
-what if my only motive was LOVE?
-look for what is common between you and others
-Luke 1:53--He filled our wanting with good things


Things I realized after attending that I need to change in my life:
-I need to make scripture reading a priority again so I know that I'm doing what my Heavenly Father wants me to do, every day
-I need to make sure I am living a fully virtuous life so that I can have CONFIDENCE that what I'm doing is right, and also have the Holy Ghost to guide me in every decision I make
-I need to remember that my life still has plenty of miracles even though it might not be what I expected it to be

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.

Superheroes and Sidekicks

Over the years, I have been exposed to a wide variety of superheroes. My oldest son loved "Justice League"--Flash was his favorite. He had the Flash costume, and darted around the house like lightning. The Justice League was a team, each doing his or her part to solve the problem—to save the world.

My youngest now loves "Star Wars." He carries a light saber on his belt loop. He watches light saber videos on YouTube. He says he's from "the dark side" (watch out). In "Star Wars," the apprentice learns alongside the master teacher until he is ready to go out on his own.

Sometimes people call moms "superheroes." And we are, quite frankly. We are master teachers, or at least trying to be. We have apprentices at our side—little "sidekicks."

I have three "sidekicks" or apprentices. Two of them are getting along nicely, becoming more independent every day. They're soaring and flying in new ways all the time. I love watching them venture out, but I'm there to catch them if they fall, too.

My daughter is 12, but she's still my sidekick in many ways. Having autism means she gets to be an apprentice a little longer. And that's okay.

When we go places in public, and there are too many people, and she feels scared, I come to her rescue. I speak for her, I help her, I teach her. She stays by my side like a loyal sidekick--she trusts me.

At school she has a 1:1 aide. Her aide is like her master teacher--my daughter is learning the ropes right along side her. Sometimes her aide lets her fly solo, but she's always there to catch her fall. That's what superheroes do.

At church youth events, she is my sidekick, for now. She's venturing into new territory and needs someone to help her learn. I'm happy to be her master teacher. But I know, with time, she will rise to a new level.

She's had the help of superheroes, master teachers, all along the way. Therapists, aides, doctors, friends, siblings, parents. Her own little "Justice League" working alongside her to save the world--to save her world--to make her world safer.

Superheroes and sidekicks. The master and the apprentice. They work together.

You want to know something, though? Sometimes I don't feel like the superhero--I think my daughter is. She's facing the world in a way I can't possibly understand, and that makes her braver than me. She's like my master teacher, and she's my superhero. She's taught me more than I could possibly teach her. But I'll fill in the role of "superhero" until she realizes she's had superhero powers all along. One day she's going to fly away and take the lead, and I'll be the one left behind.

No matter what, we'll always be a team, and I'll be there to catch her when she falls.

"I Love You" Rules Our House

It's February, and the month in which love is celebrated.

For many parents with special needs children, hearing the words "I love you" can mean the world. There are countless inspirational stories written by parents about how many years they've waited just to hear those words from their child, who before was nonverbal or lacked language skills. I have to admit, I get teary eyed reading them. It is a wonderful thing to hear your child say these magical words.

But can it be possible to actually loathe them? Let me tell you a funny little story about my daughter...

My 12-year-old is on the autism spectrum. When she was around 7 or 8 years old, she began displaying vocal tics (and motor tics, or movements) and mild Tourette's was added to her list of diagnoses. She seemed to have certain words she would repeat often, and movements as well. It was like she had an electrical current running through her body, and she couldn't feel better or release that energy until she said certain things or moved a certain way. That's the only way I can describe it.

Over the ensuing years, she had many different vocal tics that would come and go, but one that has stuck like glue is "I love you." (I first wrote about it on my own blog here.)

A typical conversation with my daughter would go like this:

J: "Mommy, can I have some juice?"

Me: "Sure, J."

J: "I love you."

Me: "I love you, too."

Immediately following any question/comment/suggestion made by her to me (and sometimes her dad) she says, "I love you." Sweet, right? But do you know how much J talks to us during the day? A LOT. And if I don't say "I love you" back, she cannot go forward with anything else. I must reply to allow that electric energy to be released.

For a time, she was saying this to her younger brother also, and if he did not respond the first time, she would repeat with more urgency, "I love you!", waiting for a reply. If it took a third time, well, she'd be full-on angry, yelling "I love you" and even resorting to hitting him for an answer. I never thought I'd have to break up fights between my kids because one of them was saying "I love you" in a mean way! Oh, the irony!

I love that she feels the need to say "I love you" at the end of every single conversation with me, but I have to be honest, hearing it so much does wear on my nerves! Yes, I know she really, really, really loves me. But is there some underlying reason that she's saying it so much to me? Does that internal energy of hers sense that I don't always love her?

For a while, after this phrase became very commonplace, I began to second guess myself as a parent. Maybe she's saying this so much because she feels like I DON'T love her? Maybe she's saying it more like a question, to see if I really do love her and will respond the same? Maybe I'm not showing her enough love, and she has to remind me often that she loves me so I can remember how much I love her, but don't say it as much?

There was a time, almost 2 years ago, at a special church broadcast with other moms and daughters, where I really felt the spirit of the evening through the wonderful speakers and I felt an overwhelming joy in just being her mother. I could feel the love for her more than I'd ever felt before. And she must have sensed it somehow, because during the entire meeting, she kept saying "I love you" to me over and over again, and I replied every time, not with aggravation or an eye roll, but with tears rolling down my cheeks. In fact, I didn't want her to stop saying it. She doesn't like it when I cry, either, but in that moment I think she understood. I will always cherish this memory.

Regardless of how I feel, Julianna is keeping the love in our family alive. Perhaps she knows how challenging things can get in our household, and it's her little way of reminding all of us just how much she loves us. Yes, at times, I still get frustrated hearing it every 10 minutes, and yes, I've come up with ways to make replying to her easier when it becomes too much (signing "I love you" with my hand) but you know what? If it's the one thing she's going to tell me all day, every day, for the rest of her life, I'm happy. She loves me, no matter what, no matter how much I mess up, or get upset, or break down. Her love will keep me going.

This post originally appeared on www.snapvoices.blogspot.com.

Transatlantic Tuesdays: Letters from Across the Pond

Right before Christmas last year, a war began brewing in a closed group for writers of a very popular disability website. And as is typical, when there is a bad thing going, good will always come out of it. Well, much good came out of this war-like conversation: a wonderful bond and connection between parents who felt strongly about being advocates for their disabled and sick children, who advocate mainly through their powerful words. Some of the parents and I began private messaging during this time, and decided to form a closed group where we could all support one another without any fear of criticism. This group is flourishing and helping and supporting, and encouraging those parents to continue writing despite what other opinions are floating out there. And those same parents and I decided to start a blog where we could publish all parents' stories. We named it SNAP: Special Needs
Advocates and Parents. Now you know the history behind SNAP, and I strongly believe that without that little battle before Christmas, none of this would have happened.

And in the early days of our new group, I met some amazing new parents who had all been writing for that popular website. We got to know each other, and I must say, I feel like we are all family now. One parent in particular would share her blog posts and published articles and I always felt touched by them--her writing spoke to me. Maxine, from England, is a mother of a child with Down's syndrome named Rukai, and she blogs at Down In Front, Please. She also has red hair, which is something I of course admire. But more than that, I admired her boldness, her concise yet descriptive language, the literary tone she weaved through every piece, every sentence. Her words move me--to action, to pondering, to betterment.

I continued to be drawn to Maxine's words, and asked if she would like to collaborate with me somehow. After about a week of brainstorming, we decided to write letters to each other, letters that would dig below the surface of the issues we face every day. Letters that show how similar we are as parents, despite how different our children's diagnoses are. And so, "Transatlantic Tuesdays: Letters from Across the Pond" was born.

This was her letter and introduction to the project. Before you continue reading, click that link. Her words are powerful and thought-provoking, to be sure. They respond to an article of mine published here.

Have you read both links? Good. You are ready to read my reply to her fabulous question posed at the end of the letter:

"Now if you're up for it, how about telling me what exactly is buried in that ice?"

Dear Maxine,

I'm so elated that you read my recent article. You say it seemed like the tip of the iceberg, and to be completely honest, it really was. With only 500 words to pen it was nearly impossible to delve into the depths of the despair that was in that singular moment of my motherhood. So yes, I chopped and chiseled my words down to what I thought were the most meaningful to share, because that's what I do! But what were in those "teardrops of hopelessness" that drifted into the wind?

Well, I'll tell you one thing. Growing up in a family with very typical children, I never imagined for one second that I'd have a child with a disability. It was something that other people dealt with, but not what I would deal with. Does anyone ever consider it might happen to them? Imagine what it would be like, or how they would feel? I never did, and motherhood came at a young age for me. I fully expected to have a normal, healthy child, because that's what I knew growing up.

However, there were certain instances that I think prepared me for this life. I remember going to a facility for handicapped and disabled children and young adults when I was about 14 years old. Each of us was assigned a person from the facility to care for while we were there. I will never forget the face of the young man I pushed around that day in his wheelchair. His dark brown hair, his permanent smile, his body movements when he was excited. The employees tried to teach us how to interact with these severely handicapped individuals. I did my best at such a young age. I talked to him and knew he was listening. I patted his shoulder and tried looking into his eyes.

At the end of the visit, we all gathered in a large room and an employee led us in singing songs together. Watching these disabled people respond to the music was overpowering. They swayed, they smiled, they laughed. Even now, when I think of that moment, I get goosebumps. I remember he grabbed my hand as we all stood in a circle. I felt my soul connect with his. Human touch is a powerful thing. I'm so glad I got to experience this as a young person. No doubt our youth leaders were divinely inspired.

Flash forward to the year 2004. I'm a new mom to a cute redhead. I've just been told by a neighbor that she might have autism. I'd done everything I could to push that thought out of my mind. She was too young to be diagnosed, anyway. I told myself that she would grow out of these behaviors. I'd researched autism and concluded that she didn't have enough of the symptoms. But my fears were always close to the surface. Fear is a potent emotion...

Because she wasn't walking by her 18-month checkup, her pediatrician was concerned. He gave me the contact information for an early intervention group in town. I had no idea what this meant, but thought I'd follow my doctor's advice. We were moving out of state soon anyway, so it wouldn't be a long commitment.

I arrived at the parent/child group for early intervention. All the parents were doing crafts with their kids at little tables. I looked around the room at the children and saw visible handicaps. Visible syndromes. Noticeable behaviors and delays. I didn't even stop to notice the smiles on the parent's faces. Their loving and genuine concern for their children. All I could see was that these children were different. Her pediatrician had placed MY CHILD in this same category. Why did he do this? Why did he think my child was different like these children?

I wanted to leave that room soon after I arrived. In fact, I don't really remember how long I stayed. I probably made up some excuse and snuck out of there, clutching my precious child to my chest.

Why did I feel this way? How could I feel such a strong connection to a handicapped boy as a teenage girl, but feel the complete opposite about my own child? I obviously understood the impact that a precious soul could have on my own--why couldn't I feel that with my own child?

Here's why--here's what's buried under that ice, that is usually chiseled away conveniently as to not offend or demean. My daughter is MINE, and I wanted her to be perfect, not broken somehow. Perfect, not damaged or needing repair. Perfect so I wouldn't have to worry. Perfect so I could keep all the same hopes every parent has for their children. Perfect so I wouldn't have to be broken, too. Oh, how wrong I was, and how strongly fear had a grip on my perception at the time...

But life is not about perfection. It's about being broken, over and over again, and finding the strength to sweep up those pieces and put them together. And when those pieces are glued together, we might look at ourselves and see those cracks, those visible scars, and think, why can't it just be easier? Ease does not lead to growth, only hard things do.

Back in 2004, I didn't know what the future held. I didn't know that my daughter eventually would be diagnosed with autism. I didn't know I would have a son with a frightening blood disorder, or another son with a birth defect. I didn't know how broken I would feel as a mother. But what I do know, now, is that I've always been able to gather up the pieces and make myself whole again. There are probably many cracks beneath the surface, but on the outside, to the world, I try to appear strong. It's all I can do without completely falling apart, which I do often, in quiet moments to myself.

And I know now that being broken doesn't mean anything at all. We are all broken and damaged. We all need repairs. We will always have worries, and our dreams will not always come true. But that doesn't mean we can't make something beautiful of our lives despite the brokenness. It's okay to be broken, because it means we are being shaped and formed into who were were meant to become, much like an ice sculpture has to be broken and chipped away to create something beautiful.

So, Maxine, that's what's buried under the ice, what you might find below the tip of the giant iceberg of my life to my very special children. And now I have a question for you:

How have you turned the negatives thrown at you regarding your son's diagnosis into positives?

Your friend across the pond,

Kera