Our Christmas

This year is Bug's fourth Christmas. Many other kids his age are excited about Santa Claus and all of the other fun stuff surrounding the season. Bug, frankly, doesn't care at all about any of that. I think a year or more ago, I might have been sad at the thought of Bug being like that, thinking that he would be missing out. But, I've found that he's  not missing out on anything - in fact, he's making our holidays better.

Bug understands things better when they are simple and concrete. So, we've simplified our holidays, which allows us all to focus on the most important aspects of Christmas: celebrating Jesus Christ's birth and life, spending time with family, and doing good things for others.

We've also been reflecting on the past year or so and how blessed we've been. As we have used our challenges and trials as opportunities to pray and try to be spiritually stronger, we have been blessed with a greater testimony of and closer relationship with our Savior. Yes, God sent His son because He loved the world, but He did it also because He loves me, and Bug, and each of us individually and unconditionally. Christ's example and atonement can strengthen us when we have sinned, when we are strong, when we have been hurt, when we feel downtrodden, and when we are living our daily lives. We've learned that better this year than any other time before.

This Christmas, simplify. Focus on the truly important parts of the holiday and don't worry about "missing out" on any of those extra things that, in the end, aren't the best part of the season. Enjoy your family. Be a little kinder. And, if you'd like to learn more about the first gift of Christmas and how you can be strengthened by Christ's life, view He Is The Gift.

Patience at Target

We had a great weekend. We went out, had fun, ate ice cream, made it through a good portion of church, and spent time with family. It tends to be easier to be patient and see the good in little things when the kids are happy and the day is going smoothly. Lately, my patience hasn't quite been where it should be, so I learned a lot and saw a lot of good this weekend.

The past few weeks, Bug has had a new thing to be particular about: going in and out of doors. At church, for example, he always goes in the far right door, then out the same one (so far left as we're leaving). He has decided he always wants to go in and out the same doors (the green "IN" doors) at places like Target, too. Usually, that's not a problem, but it's Christmastime and stores are much more busy and crowded than when we typically go out.

We've been working on this door thing, and the day was going so well, I was surprised when Bug stopped about 10 feet from the "OUT" door and silently started showing signs of agitation. He wanted to go out the "IN" doors - because green means go - but there were carts blocking the space between the two sets of doors and lots of customers. I tried talking him through it: "We go in the green and out the red!", "Look, all the people leaving are going through the red doors!", so on and so on. He wasn't having it. Dad tried some different logic, too. Still nothing. Still staying firmly in place, pointing at the green doors and wanting to leave against the flow of foot traffic.

It would have been easy to just pick him up and go to the car (something I've done before, with chaotic results), but we didn't want a meltdown and we weren't in any hurry. I started thinking about how Bug loves letters and is starting to recognize words, so I thought I'd try that - I felt it was a long shot, but couldn't hurt. And, wonderfully, that ("O-U-T spells 'out' and we need to go out!") got him to go, no problem.

Getting Bug through a door may seem like such a small thing, but it was a great lesson for me. First, as a parent (especially one to a child with special needs), you have to think creatively. What I thought would make sense to him, didn't. I had to try to see things from his perspective a little better and guess what track his brain was on. More importantly, for everyone to be happy and content, we had to do the hard thing. Standing in the exit of Target and trying to reason with a preschooler really isn't too hard in the grand scheme of things, but it's an experience that I need to remember. Instead of letting impatience and my feelings get in the way of things, we were patient and took the time to work through things with Bug instead of trying to change his thought process. We took the more difficult route, but the return was well worth the effort.

Mini-Series Week 4

For the month of November, I am going to try at least once a week to relate to you something about autism that I am thankful for.

For my final mini-series entry, I am thankful that autism has brought us gratitude. It's partly due to a shift in priorities, but it's due largely to newly found humility. Autism has laid bare our strengths, our weaknesses, our fears, and our hopes. Seeing life in that new light has compelled us to gratitude more than ever. Some days it's hard to be truly grateful, but overall, I am more grateful for all of my blessings, in even the smallest details of my life. As a family, we appreciate each other more, we enjoy the little moments more, we see better how blessed we are in our circumstances, and we have come to a richer understanding of God's hand in our lives. My heart has truly been softened and changed to be more grateful, even in the most turbulent times.

Mini-Series Week 3

image LDS.org

For the month of November, I am going to try at least once a week to relate to you something about autism that I am thankful for.

Last week was a bit of a crazy one, so I'll be sure to add one more entry for this series on Sunday.

Today I am grateful that autism has taught me about love. Through autism, my love for myself, my family, and even total strangers has been tested and eventually strengthened. I've seen what unconditional love can do for me and others around me: from giving me strength I thought was beyond my reach, to softening hearts and opening minds. Bug has taught me what unconditional love looks like, because that's the love he gives each of us. I also feel that I have a deeper, though still incomplete, understanding of what God feels for me. Everything I feel for Bug, all I see in him and hope for him, is a small sample of what God feels for each and every one of us. That is a priceless lesson that I will always be grateful for.

Mini-Series Week 2

For the month of November, I am going to try at least once a week to relate to you something about autism that I am thankful for.

This week, I am grateful that autism has taught me about priorities. Parenting is always a game of "pick your battles", but I feel like that's amplified with autism. Do I really care if Bug is dressed nicely for church with a white shirt and khakis, or is it more important that he happily puts on jeans and a t-shirt and actually goes to church? Would I rather have a clean kitchen, or let Bug splash water all over because he needs the sensory input?

My change of attitude about priorities has extended beyond the minor things like outfits and cleanliness, though. I've learned the value of connecting with my kids over connecting to anything else; the value of celebrating every single success and step in the right direction, no matter how small. I don't have lofty goals or dreams for my kids - instead I just want them to be happy and find what brings them joy, not me. In short, autism has showed me what truly matters in the long-run.

November Mini-Series

lds.org

I've been trying to be more grateful lately, and just more positive overall. I'm struggling a little with applying that to autism. I'll be completely honest: sometimes I hate autism. It's hard to see Bug be limited by something totally out of our control. I tend to see autism as a vehicle for opportunities to learn and grow, but have difficulty being thankful that autism itself is a part of our lives. That's a narrow differentiation, but I get stuck on it anyway. 

So, for the month of November, I am going to try at least once a week to relate to you something about autism that I am thankful for. 

Today, I want to start with compassion. Because autism is a "hidden" disability, or something you can't tell someone has just by looking at them, I've learned not to make quick judgments about people. To anyone we pass while we're out and about, Bug physically looks like an average preschooler. Strangers don't know about his sensory issues and his feeding difficulties, or his astounding memorization skills. Just like they can't understand Bug and all his weaknesses and strengths by looking at him, I can't understand everything about a person by one, or even several, meetings. That's why I am trying now more than ever to try and be compassionate and understanding to others around me. Like the saying goes, "Be kind, for everyone you meet is fighting a hard battle" (to which I'd like to add something about how everyone has super powers to help in their battles too). It's something I've always known on principle, but autism has taught me to truly understand and live it.

One Year

Wikimedia Commons

One year ago today, Bug was officially diagnosed with autism.

We weren't surprised. I remember clearly a Sunday months earlier when, instead of participating in church services, we were watching Bug walk laps around the church gym. We were reviewing the few words he had in his vocabulary in preparation to see his pediatrician and talk about the (little) progress he'd made in his development. It was then we both realized that separately, we thought that he might be on the autism spectrum. But that didn't make the day of diagnosis any easier.

I think I didn't anticipate how hard that day would be. I expected I would cry, but I didn't expect to hardly be able to talk about it out loud for a few days. Though we were somewhat prepared for what was coming, you can't ever prepare for the emotions that follow an official, life-changing diagnosis. We resolved to do whatever it took to make sure Bug got the best care we could provide. We spent weeks looking for houses and jobs in states with mandated insurance coverage for autism treatment. We researched everything we could about autism and potential treatments and potential challenges. All of the unknowns threatened to become overwhelming. In one day, our lives turned upside-down.

The first thing I learned after diagnosis was about love. No matter who I chose to share the news with, I just felt love from everyone. There was no judgement, no disbelief, no tension. I remember clearly everyone we told said some variation of, "We love Bug and all of you. We want to support you and help however we can." If you were one of these people, thank you. Everyone's support meant (means) the world to us.

We also quickly learned that although the diagnosis was difficult, it was absolutely worth it. Fear and stigma can surround any diagnosis, especially an "invisible" or psychological one. Believe me, we were plenty fearful about what life would be like for Bug with a diagnosis forever being attached to him. That diagnosis, and sharing it, has been nothing but helpful. We have been guaranteed help and protections under the law. Caregivers have an idea of what to expect and what treatment may work, all because of the diagnosis. 

As silly as it may sound, a diagnosis has been like a call number for a library book. Remember the Dewey Decimal System? The first three numbers always indicate a broad topic. Like language or history or philosophy. Within that topic, the books vary between more specific subject matter, length, and reading level, but they are all related. Bug's call number starts with "autism", and although that doesn't tell you everything about him, it helps give a general understanding of what to expect with him.

We still face plenty of challenges and unknowns. But I can't help thinking about the difference a year has made. Bug tells us about what's going on around him, he shows interest in his peers, his diet has improved dramatically, and we can do things as a family we never imagined we'd be able to do again - everything from going to specific stores and eating out at a restaurant to trying completely new experiences. Discouragement is no stranger, but looking at the bigger picture and every little bit of progress gives us renewed hope. The past year has been a rollercoaster, but rollercoasters are still fun, aren't they?

On "Amazing"

lds.org

We're all admirers. We see people and all the wonderful things they do, especially on social media, and admire them different ways. We may admire someone's decorating skills, another's dedication to a hobby, and yet another person's musical talent. You might find yourself thinking, "She's amazing!"

What about other parents? What makes you admire someone in their parenting skills and declare them, whether you keep it to yourself or express it out loud, "amazing"?

Before I ever had children, I thought all parents with special needs children were amazing. After Bug was born and I quickly learned what a challenge parenting is, that cemented by belief.

Then...I realized I was one of those parents. But even though I found myself as part of that amazing-special-needs-parent-group, I didn't feel amazing. Honestly, much of the time, I felt lousy. I wasn't as patient as I should be. I was still learning all about autism and Bug's specific needs. I thought that because I had a special needs child, I must be amazing, and since I didn't feel that I was, I was doing something wrong - or worse, I didn't deserve him.

My thinking was backwards: exceptional children aren't exclusively born to amazing people. Exceptional children are born to ordinary people, and over time, those ordinary people become amazing. That same principle applies to any hardship or challenge. You aren't given trials because you can overcome them with ease; but because through them, you can improve and learn and grow in ways you could not otherwise (this post is particularly relevant).

It's easy to determine someone's amazingness (however you want to define it) by the challenges they face, if only because we have no idea what we would do if faced with those challenges ourselves. But over the last year, I have tried instead to appreciate people's efforts not by the challenges and trials they face, but by what they do with them. Let's not get into the habit of defining people by their circumstances, but instead by their unique traits that help them make the best they can of any situation in which they might find themselves. I believe it's safe to say that most people are honestly doing the best they know how every single day, in every situation - which makes us all amazing!

Being Open

lds.org

I've been thinking lately about our openness in regard to Bug's autism. Although we kept his process of diagnosis to only people we were very close to, we shared the news of his official autism diagnosis within weeks of it being made. We told our families, our friends, our coworkers, our church congregation...pretty much everyone we saw on a regular basis. We didn't discuss this choice much, but we were in total agreement that it was what we wanted to do.

Not everyone chooses to share a medical, developmental, genetic, or other diagnosis with everyone they know. And that is completely valid - it is a personal choice. I would just like to share our reasoning behind sharing with the world that Bug has autism.

It's fairly obvious that there's something different about Bug. A few people outside of our families told me that they always knew he had some kind of difficulty. Bug's delays weren't obvious to us, due to him being our first child, but the more time we spent around other children, the more we could tell he just wasn't like them. So, we shared Bug's diagnosis both for our and others' sake. 

For us, sharing the diagnosis would mean more compassion from others, and an understanding that Bug's differences aren't anyone's fault or failing. For others, a specific diagnosis makes interaction with Bug easier: they can draw on what they know about autism to help him out and be more patient with him. This mutual understanding was important to us, particularly in a church setting, where kids are generally expected to be well-behaved and quiet - and he wasn't! He also has teachers at church who have been able to help him enjoy his time there better now that they know his individual difficulties.

Some people may think that sharing a diagnosis is the same as trying to excuse behavior. We don't feel that way. We still hold Bug to behavior standards and if things get out of hand, we remove him from a situation, where possible. Others may feel that sharing a diagnosis isn't really our choice to make, but his, when he's older. Once again, we don't fully agree with that. When (if) he's on his own when he is older, that will be up to him. But for now, we'd rather let people know why he's so different from other kids, and autism is such a big part of our daily lives, that it's better to give a word to everything that's going on.

Aside from any practical reasons, we just felt we should share our world of autism with everyone around us. We took a big leap of faith in both sharing the news, and continuing to share our experiences with autism - what if people look down on Bug or us as parents? What if we know people who think autism isn't real? What if they think we are just looking for attention? All of our fears were really for nothing - we have been met with only kindness, compassion, patience, and love this past year. Our act of faith was met with an outpouring of blessings. Though our burdens haven't been lifted, we have many people helping us bear them. The support given to us helps us more than we can express.

Just as Bug has been teaching us as parents about patience, faith, Christlike love, and empathy, we are hopeful that by being open about his autism, he has been teaching so many others around him those same lessons. That alone is, to us, reason enough to share our journey with autism with the world.

Faith and Trials

lds.org, Hymn 105

This past year, my faith has been shaken. I didn't expect that. Like everyone else, I've been through trials before that felt never-ending. My trials had always ended, and my faith was always strengthened. When we started the months-long process of diagnosis, I saw the time ahead as another trial that God would pull me through and use to help me become stronger. That positive attitude didn't last too long.

The first few evaluations were okay. I felt a little discouraged, but at the time, we only knew Bug was delayed. A delay brings a sense of ending: if he's delayed, he'll eventually catch up, no big deal. But once everything was pointing more toward autism, I became more and more nervous. I didn't want my son to carry that kind of burden for the rest of his life. Like any parent, I wanted to be able to fix whatever went wrong in his life.

In October, the autism diagnosis brought with it a lot of sadness. We knew that many things would not come as easily to Bug as to almost all the other children we knew. We knew that for the rest of his life, Bug will face stumbling blocks and challenges that others around him may not be able to help or understand. I, of course, didn't want that for Bug.

After the sadness, the questions started to surface. Most of them started with why. Why does Bug have autism? Why him? Why our family? Why would a loving God allow individuals and families to be profoundly affected throughout their lives by incurable, sometimes debilitating, defects, illnesses, and the like?

I'm not the first person in history to ask these questions, so there were plenty of answers to them to be found. And, oh, what a range of answers there are, even among the members of my church. I eventually concluded that I needed to find my own, personalized answers. Even though I was hurting and lost, I knew that if I wanted to come out with stronger faith and testimony, I needed to work on my personal understanding of God and the gospel - not someone else's.

So I prayed, searched, and read, over and over. I found that I needed to return to basic principles, because so often we can get lost in the deeper searching that we let our foundation of faith crumble. Some of the basic doctrines that have served as a means to find my personalized answers are:

1. Not all trials have a reason behind them. In the New Testament, Jesus remarked that a man's blindness was not a result of his own, or even his parents', sin (John 9:1-3). James E. Faust expanded on this:

"The Savior’s teaching that handicaps are not punishment for sin, either in the parents or the handicapped, can also be understood and applied in today’s circumstances. How can it possibly be said that an innocent child born with a special problem is being punished? Why should parents who have kept themselves free from social disease, addicting chemicals, and other debilitating substances which might affect their offspring imagine that the birth of a disabled child is some form of divine disapproval? Usually, both the parents and the children are blameless. The Savior of the world reminds us that God 'maketh his sun to rise on the evil and on the good, and sendeth rain on the just and on the unjust.' (Matt. 5:45.)"

This is applicable to any type of difficulty; Boyd K. Packer said that "The idea that all suffering is somehow the direct result of sin has been taught since ancient times. It is false doctrine." 

So where do some of the difficulties of life come from if not from sin or from God? Neil L. Andersen explained, "Not all the whirlwinds in life are of your own making. Some come because of the wrong choices of others, and some come just because this is mortality."

It's also worth mentioning what the LDS Church Handbook 2 advises:

"Leaders and members should not attempt to explain why the challenge of a disability has come to a family. They should never suggest that a disability is a punishment from God. Nor should they suggest that it is a blessing to have a child who has a disability."

2. We can endure, and become stronger because of, any trial. Notice I say endure, not enjoy - that is a very important distinction to me, because I think we often falsely believe that we have to make it through every rough patch with a smile. It can help, and it is often possible, but we'll all undoubtedly face trials that challenge us to our cores, putting us in survival mode. That is okay. We can still learn and become better through (and maybe some time after) such trials. Thomas S. Monson said:

"Our Heavenly Father, who gives us so much to delight in, also knows that we learn and grow and become stronger as we face and survive the trials through which we must pass. We know that there are times when we will experience heartbreaking sorrow, when we will grieve, and when we may be tested to our limits. However, such difficulties allow us to change for the better, to rebuild our lives in the way our Heavenly Father teaches us, and to become something different from what we were—better than we were, more understanding than we were, more empathetic than we were, with stronger testimonies than we had before."

James E. Faust also taught about how trials can change us:

"In the pain, the agony, and the heroic endeavors of life, we pass through a refiner’s fire, and the insignificant and the unimportant in our lives can melt away like dross and make our faith bright, intact, and strong. In this way the divine image can be mirrored from the soul. It is part of the purging toll exacted of some to become acquainted with God. In the agonies of life, we seem to listen better to the faint, godly whisperings of the Divine Shepherd."

3.  There is always at least one who knows the depth of my pain and sorrow. Through the Atonement and His time on earth, Jesus Christ has perfect empathy. Dallin H. Oaks explained this beautifully:

"The Savior teaches that we will have tribulation in the world, but we should 'be of good cheer' because He has 'overcome the world' (John 16:33). His Atonement reaches and is powerful enough not only to pay the price for sin but also to heal every mortal affliction. The Book of Mormon teaches that 'He shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people' (Alma7:11; see also 2 Nephi 9:21).

"He knows of our anguish, and He is there for us. Like the good Samaritan in His parable, when He finds us wounded at the wayside, He binds up our wounds and cares for us (see Luke 10:34). Brothers and sisters, the healing power of His Atonement is for you, for us, for all.

"…At times we may despair that our burdens are too great. When it seems that a tempest is raging in our lives, we may feel abandoned and cry out like the disciples in the storm, 'Master, carest thou not that we perish?' (Mark 4:38). At such times we should remember His reply: 'Why are ye so fearful? how is it that ye have no faith?' (v. 40).

"The healing power of the Lord Jesus Christ…is available for every affliction in mortality."

I could go on (and on) about the ways my faith has been strengthened these past months, but most of them stem from these three basic principles. I'm grateful for each answer to prayer, each new gospel truth I learn through study or experience, and look forward to growing in faith even more in the time to come.

Entering His World

We go on a lot of walks, partly because they fill many of Bug's sensory needs and help wind down his three-year-old energy. I have plenty of my own reasons for going on a trip around the neighborhood, though. All too often I feel trapped after being in the house for a few days straight, or worse, I feel like I will snap at the next scream, whine, or outburst (I clearly have a long way to go with patience and long-suffering). So, I get the kids all ready to go on a walk, many times with one or both of them crying, and we leave the house to let off some steam.

One day last week, we went on a walk just for the sake of going on a walk - I hadn't reached my breaking point, the boys weren't getting antsy, it was just a nice morning. That walk was such a different experience than most of the others we've taken.

Because I wasn't focused on something negative, I was able to see why walks are so good for Bug. His sensory system often switches between two extremes: he's either completely underwhelmed due to hypersensitivity, so he gets narrowly focused on one sensation (like hopping around the house); or, there is too much sensory "noise" around him, so he goes into a meltdown because he can't cope. I finally saw how a walk is a perfect match to his sensory needs.

Our walk was filled with gentle, soothing sensory "noise": a cool, low breeze; the sounds of birds, rustling leaves, sprinklers, and so on; smells of cut grass and flowers; and the consistent feeling of light work in the muscles through walking itself. I found myself with a clearer mind than I had in days, and I realized that must be what walks do for Bug, but to a greater degree. If my mind can so easily get off-track due to the uneven sensory input it experiences day-to-day, how much worse must it be for him? How much harder must it be for him to think clearly and make sense of the world when his senses are in some ways over sensitive to average input, and in other ways under sensitive?

I realized I don't take the time to think outside of my normal and try to see the world through Bug's eyes nearly as much as I should. I realized a lot of my frustration stems from trying to get him to see things my way, when that is often simply impossible for him. Yes, there are times when he's being a three-year-old and our ideas of fun or important simply don't match up; but there are other times when I'm so focused on what I want that I overlook what Bug needs. I realized I'm happier when I try seeing the world through his eyes, because in this relationship we have to meet each other halfway and find common ground. Bug is doing a wonderful job following our encouragement to step out of his comfort zone and meet us at the halfway point every single day, so I need to follow his example and do the same.

lds.org

Finding Happiness

Bug finds lots of happiness when he's outside. Bubbles increase it.

I've mentioned, mostly briefly, before that the months after Bug's diagnosis was a rough time for me. I've never discussed it much detail, though, due to fear and plain shyness. But I'd like to discuss it more directly now in case there's anyone out there like the Me of a Few Months Ago who wanted so desperately to know that she wasn't alone in her feelings.

I knew that Bug's autism diagnosis would bring with it the stages of grief. I just felt like I had been grieving for so long and I didn't want to anymore. But, no matter how hard I tried, I didn't feel I was getting better. Some days, it took all I had to just get out of bed in the morning. I wasn't connecting with the kids or my husband like I wanted. I tried to do things that in the past would have made me happy, but they didn't anymore. If anything, they were a short (or much too long) escape from my everyday life.

Somewhere, in the back of my mind, I knew I had never felt that way before and I should talk about it. I rationalized myself away from that, though, and my internal monologue just got worse:

"There must be something you think you are good at."

"...Being lazy?"

"Come on, people tell you are talented and wonderful. They can't all be wrong."

"They all might think that, but they don't really know me. They're wrong."

"Just one thing. You can think of one positive thing about yourself."

"I CAN'T."

Over and over, I thought things like this. These thoughts didn't really scare me, because I knew I was right. I knew I was worthless, so there was no harm in thinking that way. After a while, I simply didn't feel much of anything else but self-loathing and utter isolation.

Hating yourself is exhausting. I finally got to a point where I didn't want to keep wasting all of my energy on it. I still didn't want to talk to anyone honestly about what I was feeling, so I turned to the internet. I looked up depression symptoms and could hardly stand to read them because I couldn't be depressed, I just needed to stop feeling sorry for myself.

A few weeks of this, and I knew I had to do something, not for me, but for my family because I could see the toll I was taking on all of them. I found an online depression screening quiz, emailed the results to myself, and showed them to my husband because I couldn't figure out what words to say. Then came appointments, a willingness to talk more, very small and attainable goals (take a shower and get dressed today), a daily nighttime list of the things that made me smile, and little positive changes every day.

I started trying to pray, and read scriptures and talks more regularly. I remember the day I came across a talk called "The Moving of the Water", and I knew it was a direct answer to my many tearful and pleading prayers. This paragraph felt written just for me:

"You parents and you families whose lives must be reordered because of a handicapped one, whose resources and time must be devoted to them, are special heroes. You are manifesting the works of God with every thought, with every gesture of tenderness and care you extend to the handicapped loved one. Never mind the tears nor the hours of regret and discouragement; never mind the times when you feel you cannot stand another day of what is required. You are living the principles of the gospel of Jesus Christ in exceptional purity. And you perfect yourselves in the process." (The Moving of the Water, Boyd K. Packer, April 1991.)

I felt so often those tears, those hours of discouragement, and those times where I felt I could not "stand another day of what is required" - I still do sometimes. But instead of being told that it was all okay because I was given Bug due to my strength and inherent amazing qualities (which I could not believe at all I had), I was told that those feelings are okay. I was told that, yes, I was given a challenge that at times feels impossible, but it is a challenge that I can use to make me a better person. With work and (lots and lots) of faith, I can use this challenge - raising a son with autism - to be a better me and learn more about Jesus Christ in ways that I would not be able to otherwise.

Life hasn't been all rosy since I decided to make positive changes, but it has become more bearable, and best of all, I feel truly happy once again. But I know now that just as Bug needs encouragement, individual attention, and gentle care each day to grow, learn, and be happy, I do as well - so does my husband and Bear.

If that internal monologue up there seems familiar to you, please don't hesitate to do something (safe) to reach out and get whatever help you need. What you need may be different from what helped me. I promise that you are not alone in your feelings and that impossible as it may seem, you will feel happiness again.


Some more words that have helped me immensely: "Like a Broken Vessel", Jeffrey R. Holland, Oct. 2013.

Climbing Walls

Before Bug ever had a diagnosis, I felt like one might be coming. Mother's instinct, maybe. I'm a big reader, so I read articles and stories from and about other parents who went through referrals and tests and diagnoses with their own children already. One thing stuck out to me: every parent, at some point or another, goes through the stages of grief when their child receives a life-changing diagnosis. I knew that, and yet, after diagnois, I had no idea how those stages of grief would affect me - because they affect everyone differently.

You see, I thought I went through them pretty quickly. I thought I was ready to be optimistic and make oodles of positive changes and roll with the punches and not let the difficulties get me down....

But then they did, over and over. Week after week and month after month. And it wasn't until recently, when I felt a definite, remarkable change in my mood and our home environment, that I realized it took me much longer to grieve. To say the months since October have been a roller coaster is an understatement. I've changed and grown in so many ways I can't describe, and those changes and growth are still happening.

I think I'm finally at a point where I can do my best to share some of my changes and growth with you. I've wanted to share for so long, but it just never really felt right until now. Until today, actually.

I've split this post for length, so click on through to read more.

Happy April!

At our house, we're excited for April. We're ready for the nice weather, we're making plans for Bug's birthday, and he'll be starting preschool soon.

April also happens to be Autism Awareness Month. Some people celebrate, some don't, so keep in mind everything here is how we feel about this month.

If you're here reading this, you're already autism aware; congratulations! It's now our turn (and yours!) to go a little beyond that. Here are some ideas to spread compassion for autism this month:

1. Educate yourself! Pass along what you learn with others. The biggest thing to keep in mind about autism is that it affects every person with the diagnosis differently. As the saying goes, "once you've met one person with autism, you've met one person with autism". Don't assume that what you know can be applied to every person on the spectrum. Here are a few good places with basics and links to learn more:

-CDC

-Autism Speaks

-NIH

-Autism Society

Since you are here already, we also love to answer peoples' questions!

(I'd also like to briefly add that the autism community is a diverse one. Not everyone affected by it feels the same way about its potential causes, treatments, cure, or prevention. Just keep that in mind if you get to reading more than the broadest info about ASD, especially online.)

2. Wear something. It seems like such a simple and passive thing to do, but if wearing a puzzle piece ribbon opens up even one conversation with someone about autism, then I think it's worth it. Tomorrow, April 2, you can wear blue as part of Autism Speaks' international Light It Up Blue campaign to raise autism awareness. Sevenly is also selling some very cool (but pricey) clothes with autism messages this week only. You can always Google if you want to buy other autism stuff; there's plenty to browse.

3. Screen your child, if you've ever had any concerns about autism. Or, screen yourself! (Please note that online measures will not replace the advice and care of a doctor - they'll just give you a better idea of how you or your child compares to major attributes of ASD. Bug actually passed the first screening at his 18 month appointment!)

4. Think more positively about the people around you. If we've learned anything from this autism journey so far, it's that you never can tell everything that's going on with an individual or family from seeing them once in public. Or in many cases, even seeing them on a regular basis. Some people aren't open with diagnoses, like we have been. The bottom line is, you never know what is really driving peoples' behavior, so don't assume the worst!

5. Lend a hand. If you know someone affected by autism, offer to help them out somehow (and we're not fishing for anything, so think beyond our family!). You can take a meal, offer to have a child over for a playdate, organize a moms' or dads' night out for a parent, or offer to babysit. The biggest thing you can do is just be a friend. If you know a parent to a child with autism, don't let your childrens' differences hinder your friendship (your kids have more in common than you may think). If you know an individual with autism, work to have a genuine relationship with him/her. Make a true effort to enter his/her world and see things around us the way he/she sees them. 

These are just a few ideas. When the month of April is over, don't forget what you've learned! For families and individuals affected by ASD, autism awareness isn't reserved to April; it's an everyday thing. They need love, kindness, and understanding all year long.

What This Autism Mom Wants You to Know

Having your child diagnosed with autism, or any other disability, sets you apart as a parent. You're thrown into a whole new life that other parents, while well-meaning, loving, and sympathetic, can't fully understand because they aren't living it. We've been very open about what life is like and how we've come to this point with Bug, but I can't share everything I'd like people to know about our family in a casual conversation.

I know every mom and dad to a child with autism sees things differently, but I wanted to share a few of the things I wish I could tell every other parent I know about us and our unique experience with autism (so far).

1. Ask me questions! We've been open about Bug's diagnosis for a reason. We want the people who know him and see him to understand what makes him different. We may not have answers for every question about autism, but we are certainly the experts on Bug.

2. Every child on the autism spectrum is different. Autism is a spectrum disorder, which means that people diagnosed with it have a wide variety of severity and symptoms. You may know other children or adults with autism, but that doesn't mean they will have the same difficulties and strengths as Bug.

3. We don't care what caused Bug's autism. There are so many different theories about where autism comes from that it's hard to keep track of them all! As far as Bug goes, we accept that he has autism, we aren't going to worry about anything we might have been able to do in the past to prevent it, and we are enjoying being Bug's parents - autism and all.

4. Autism isn't something Bug will "grow out" of. Put simply, autism is part of Bug's wiring, and that wiring doesn't change. As he gets older, some of his difficulties won't be so obvious and he'll be able to self-regulate, but autism will always be a part of who he is and will always make certain things difficult for him.

5. Please don't use the "R-word". I started out writing my explanation here as a wordy one, but I'll just say that every time I hear someone use "retard" or "retarded" as an insult, it makes my stomach turn. It's sad to me that people would use my son's - or any other person's - special needs as an insult, joke, means of ridicule, or something to be ashamed of. You can read more on this here.

6. Try not to judge other parents you see each day. You never know what they may be going through. Sure, they may not seem to be doing a wonderful job, but they are likely to be doing the best they can. A kid who looks like he's just being stubborn in the middle of the IKEA exit might actually be in the midst of a full-blown autism meltdown (ask me how I know). So, like some wonderful IKEA shoppers I saw once, simply try not to stare and don't make any comments, or if you want to help, gently say something along the lines of "Is there something I can do for you?" and go back to your day if the answer is no.

SB 57 - Part 4

Today is a great day.

I'm pleased to write that SB 57 has been signed by both the Speaker of the House and the Senate President, and now awaits signature by Gov. Herbert!

In order for the bill to get to this point, it was substituted with some compromises to ease some concerns from opposition. I'm not too thrilled about some of the compromises, but I really cannot complain. The state capitol has finally acknowledged the needs of thousands of families in our state dealing with the costs of autism treatment. When the effects of this bill are reviewed in 2019 (the bill's sunset or "expiration date"), I'm hopeful lawmakers will be willing to make even more positive changes to autism coverage. Or better yet, perhaps in the meantime insurers will make changes of their own.

If you wrote to your representative or senator asking for their support, send your thanks! (Well, there were a few in the house and senate who did not support the final version.) If you would like, you can also contact Gov. Herbert to remind him to sign the bill and pass it into law.

I hope to update soon with news that the governor has signed SB 57. Thank you for your support, and if you are new to autism, coming here to learn more. We hope you'll stick around and read more about our adventures!

SB 57 - Part 3

Great news!

SB 57 made it through the Senate! The margin was still closer than is comfortable (18-7), but I'll take it. It was so encouraging to hear several senators speak in support of this bill. Autism Votes wrote a quick summary of some of the things that were said.

From here, the bill must be passed by the House of Representatives. It will first be voted on by a committee, then be voted on twice by the full House.

You know what that means? Time to pester your representative!

This page by Autism Speaks will find your representative, write a letter with relevant facts and figures, and email it with your name in support of SB 57 automatically - just enter your name and address (you won't be put on any lists, promise).

If you'd rather use your own voice to express your support to your rep, find your house district here and then your rep from this list.

One more way to help is to fill out this survey to give our lawmakers some information about autism in Utah. Take it if you are caring for someone with autism, or have autism yourself.

Hopefully, SB 57 will have gone through the House by the end of the week. In the meantime, I get to watch and learn how the House floor proceedings work. Let me know if you'd like to watch as well - it's online, easy, and informative! The Utah Autism Coalition is a wonderful resource to learn more about this bill and about general advocacy for autism in Utah.


If this is your first visit to our blog, welcome! Scroll down for our first two posts about Utah's SB 57.

SB 57 - Part 2

Bug, wondering why this bill hasn't been passed unanimously.

Spread the news and pester your senator!

Today, SB 57 passed its second reading on the Utah state senate floor with 18 yeas and 8 nays. That means that (hopefully) tomorrow, it will be read for a third time in the senate, and if it passes that, be moved on to the house for three more votes.

In other words, SB 57 is facing an uphill battle. The margin is too close and people are too opposed to adding autism coverage to the list of things we, as taxpayers, already pay for. Even if you don't have an immediate family member with autism, you likely are closely connected to someone who does (see this post). Are you okay with your money going to that person? My guess is that if you are reading this post, your answer is yes.

So, please, TONIGHT email your senator. Then spread this post on to everyone you know in Utah.

This page by Autism Speaks will find your senator, write a letter with relevant facts and figures, and email it with your name in support of SB 57 automatically - just enter your name and address (you won't be put on any lists, promise).

If you'd rather use your own voice to express your support to your senator, find your senate district here and then your senator from this list.

Here's a quick rundown on the bill.

Here's the full info on the bill, if you're interested.

I'll keep you updated on the status of SB 57. I've been watching the senate floor proceedings every day this week - I know this makes me sound a little crazy, but it's been a wonderful learning experience. Let me know if you'd be interested in watching too. It's easy, and I can explain some of the procedures now if you have no idea what's going on.

Now go forth and pester!

SB 57

Here's my first (small) stab at activism. A bill, SB 57, has passed committee and will be put up to vote in the state senate soon. This is an email I just sent to our senator.

Dear Senator,

I am writing to express my support in S.B. 57, in hopes that you will support it as well.

I am a mother to Bug, an almost-three-year-old who was diagnosed with mild to moderate autism in October 2013. Our diagnosis journey started in May. Since then, life has been a whirlwind of evaluations, therapy appointments, in-home visits, office consultations, and tears.

However, amidst the pain and stress that an autism diagnosis inevitably brings, we know we are fortunate. Because I am a stay-at-home mom, we could attend last-minute evaluation openings that we otherwise would have had to wait months for. We have family members willing to babysit at nearly any hour we need them. We have friends who can watch our younger son during appointments so Bug can be our focus. We have savings, insurance to cover some of the costs of many evaluations, and the financial support of family members.

Not all families in Utah affected by autism have these supports. I can’t imagine what life is like for them. Even in our financial stability, we seriously considered moving as soon as the autism diagnosis became official. Effective autism treatment can costs tens of thousands per year, not including the cost of additional therapies, appropriate developmental aids and toys, and any specialist visits that may be needed. The numbers were so daunting we felt it might be well worth our time to move to a state that would extend insurance coverage to cover some of those costs. We eventually decided that we would remain in Utah where we have already established our home, in hopes that things might change here.

All parents want to see their children succeed; that desire is magnified when your child has special needs.  Every tiniest bit of progress, every small step in the forward direction brings the greatest of joys. We have felt that joy over and over again with Bug as he works with his various therapists. Throughout his eight months in therapy, we have seen his vocabulary grow from 10-15 words to four-word sentences. We have seen his overall mood and demeanor change from highly irritable to genuinely happy and curious. Perhaps most importantly, we have been able to learn how Bug interacts with the world through the help of caring therapists and other professionals.

Again, not every family affected by autism here in Utah is so fortunate. While every parent wants to see this kind of progress in their own families, it’s not always possible to receive the care needed to get there. While state programs have made a difference to Bug, we have had to pay thousands of dollars ourselves as well – money that many families simply can’t spare. The reality is that while autism is a lifelong diagnosis, early, intensive treatment can make a world of difference to children and families faced with it. We have seen this ourselves. We know that every penny we have spent towards Bug’s care means more developmental progress. Every penny means more happiness, contentment, and peace in our home. Every penny means my son will grow to his fullest potential and be able to show the world how wonderful he is.

That’s what this bill would do for thousands of other children in Utah. Every penny toward the treatment of autism means more children who make leaps and bounds in their development, who bring uncounted joys to their families and communities, and who are able to grow to show the world what talented, caring, and intelligent people they are.

Support S.B. 57 and support the many children in Utah like (and including) Bug. Urge your peers to do the same.

If you'd like to know more about this bill, go here, here, or here!

The Big Question

I'm bursting at the seams with posts to write. I want to tell the whole world all about our life with autism. But it's so hard to know how to break that down. So, I'm starting with the basics.

What is autism?

Leaving the medical explanations, speculations, and gobs of research behind, here's what autism is for our family, in the 3.5ish months since diagnosis day.

Autism is energy. Bug is under sensitive to proprioceptive and vestibular input (the two senses you didn't know you have), meaning we have lots of spinning, jumping, running, crashing, etc. in our house. He once took grandpa for an hour+ walk around beyond the neighborhood, then came home and jumped on his trampoline for at least 15 minutes.

Autism is a roller coaster. Some days Bug seems like any other toddler. Others, the difficulties that autism brings take over the day completely. All toddlers have good and bad days, but autism amplifies those highs and lows a few times.

Autism is tears - from everyone. Sometimes the hard days make Bug cry a lot. Sometimes Mom and Dad cry from pride at Bug trying or mastering something new. Sometimes Bear cries because he has to hang out in the safety of his crib alone for a bit while we pass through a meltdown. Sometimes we just cry for no reason!

Autism is nonstop learning. Every day brings us new lessons in what Bug feels and needs. Bug's therapies include Mom and Dad learning different strategies and activities to help him learn and grow. Beyond Bug, the autism world is a big one that I feel I've only barely caught a glimpse of.

Autism is a battle. In Utah, autism treatment isn't covered by insurance. Period. There are a few lucky privately funded insurance plans that cover treatments (that's something!), but most of us are on our own. If a child has another condition or diagnosis that is covered, awesome - there's a way to get some help. But Bug doesn't have another diagnosis. Then there's the whole battle against ignorance. We're fortunate to not have faced this much so far. But it's still so sad how many people think autism is made-up, or a plea for attention, or a conspiracy by doctors and drug companies fueled by greed (yes, people actually think this).

Autism is joy. Even with all his difficulties, Bug is the happiest, sweetest toddler we know. His smile and laugh are infectious. He finds joy in the simplest of things. We find joy with every improvement he makes, whether it's a baby step or a leap forward. We can see the joy the boys have when they are together, even though they don't understand each other very well yet. We see Bug bring joy to his family, friends, and even random people he meets in passing.

Autism somehow just makes the sweet things in life even sweeter. Autism makes Bug sweeter. That's why he's our bucket of sugar.

Lessons from a Meltdown

One of the first things you quickly learn about a toddler with autism is that sometimes they go beyond the realm of tantrums into a Meltdown. Yes, capital M Meltdown. We saw these before we ever had a diagnosis, but didn't have a name or explanation for them.

The basics: toddlers often have tantrums, we all know them: the child doesn't get his/her way, and starts yelling/screaming/kicking/whatever it takes to try to manipulate the parent into a desired outcome. The key here is that the (neurotypical) toddler knows what he/she is doing. The toddler is actively trying to change things. A toddler with autism may start with a tantrum, but eventually gets to a point of no return where it's not even about a desired outcome anymore. He/she loses conscious control of the situation. Read a better explanation of a Meltdown here . 

Today's Meltdown: Bug wanted yogurt. We were out. He still wanted yogurt. I made some suggestions, none of which were yogurt, and therefore were not acceptable. I could sense the impending Meltdown, so I tried to redirect, but Bear started crying and I think that's where we crossed the line. Goodbye event horizon, hello black hole.

Bug's choice of calming behavior during a meltdown is chewing on his fingers. Not biting his nails, not nibbling on the tips, but sticking as much of his hand as he can in his mouth and chewing like it's a snack. Obviously, we don't like this very much and it hurts him. 

So, the Meltdown has commenced, and with it, the hand chewing. I tried giving him other sensory input: rubbing his hands, soothing noises, massage, offering his chewy tube...nothing was working. The unfortunate reality is that the best you can do during a Meltdown is minimize damage and wait it out. So I tried to keep him from biting and tried to keep myself from going into Meltdown, too.

I'm not very good at keeping myself from going into a Meltdown. All I can see is my child hurting. Thinking about how scary it must be for him: all his senses are sending unpleasant messages and he doesn't know how to cope, how to escape the neurological barrage. In these moments I often think, "autism has taken over, this isn't Bug", because it's the only thing that keeps me from getting mad at him.

Instead, I get mad at autism. I yell and scream at it in my mind. I demand to know what right it think it has to take over my son and cause him pain. Because the Meltdowns aren't Bug. He's made up of more than sensory issues and communication delays and social deficiencies. He's smart, loving, imaginative, adorable, and my little boy. He's amazing! And I hate that autism can sometimes overshadow those things or keep them hidden from the different people he meets.

But I know Bug wouldn't be Bug without autism. Since the diagnosis, learning more about autism and watching Bear grow up, we are starting to see just how much it's been a part of Bug since birth. I think that's the hardest thing to accept. Sometimes I may hate autism, but it's an integral part of Bug, of our lives, and it isn't going anywhere. If there was a cure for autism, would we take it? No. Because I know that despite the Meltdowns and all the other challenges Bug faces, autism has given him something that I can't yet put into words. I suppose it's like someone being born blind: they don't know what a violin looks like, but they can listen to orchestras and symphonies and maybe even enjoy music in a way that the rest of us can't because we're too busy watching the music being made instead of really listening to it.

That's my daily challenge - trying to enjoy the music, listen to its little nuances, and find ways to be thankful for autism. Because I am beyond thankful for Bug, and autism is a part of him.