Joy and Sadness

via Pixar Wiki

I finally feel to the point where I can write again. I don't know if it will come again any time soon, but thank you in the meantime for reading here. This blog has been a great blessing to all of us.

I think I, and many of us, often mistakenly think that as soon as we do this or that, or that thing finally happens, we will be totally happy...and then what? Over the last several months, I've learned we have to take happiness when it comes, because waiting often doesn't yield any joy.

We watched Inside Out as a family recently. It was a great opportunity to talk to Bug and Bear about emotions and what to do with them. Surprisingly, it was a great lesson for me. I learned (and hopefully this doesn't spoil much if you haven't seen it!) so much about the important relationship between sadness and joy (both of which are personified in the movie). I have had the wrong definition of happiness and joy in my head for too long: I thought it was the absence of sadness. But without the sadness, we wouldn't know happiness. We wouldn't see the true beauty of life if we didn't have the contrast of its low points for comparison.

This is an eternal principle that I have known, intellectually, for a long time. But the way it was illustrated in the movie hit me personally and helped me see my depression in a healthier way. Sometimes the happiest moments of our lives are borne out of sadness. Sadness doesn't push joy completely out of the picture, and vice versa. It's normal for everyone to have highs and lows, and just because my lows may be lower and my highs harder-fought (and often shorter-lived) doesn't mean that I am weaker than those to whom happiness seems to come so easily. Happiness isn't a contest or a race, and our worth isn't measured by the amount of days we spend full of joy.

I realized I was waiting for my depression to be gone, forever. But I don't think that's in the cards for me, at least not yet. That's hard to accept, but it's getting a little easier. I've got a better handle on how my depression works and what I need at certain points in the cycle. I'm trying more consistently to enjoy the happiness when it comes and not worry about the next low.

Most importantly, I'm trying to see all the good things depression has brought me. I'm learning to have more empathy and patience with others. I recognize what is truly important and valuable in my life. I'm making stronger and more meaningful relationships. Just like autism, depression has brought its share of difficulties and heartache, but it's something that can also teach and improve me and my family in a way nothing else can.

As we continue learning, I hope to share some ways I'm managing parenting, specifically with a special needs child, and my depression. There's not as much written about that out there as I'd like. If you have some experience with that or something similar, let's do this together! The last several months have shown me I'm not as alone as I thought, and we can all be a huge support to one another.

Finding Happiness, Part II

Well, it's been over three months since the last post on this blog. Since then, Bug has overcome some big hurdles we were dealing with in regards to attachment and rigidity, and he finished up sessions of feeding therapy and speech therapy, exceeding all the goals we set for him there. He also finished his first year of preschool and we have seen his social growth. But that's not what I want to write about today.

This is a space to talk about autism and about how it affects Bug; but we also want to talk about how it affects the rest of us, because it does every single day in major and minor ways. What I'm writing about has been in some ways intertwined with having autism as part of our lives, and in other ways, not.

I have been diagnosed with depression.

That may not seem like a major event, but it really has been. It was a long time coming and even though there were signs over a year ago, I never got a formal diagnosis and never seriously stuck with treatment. I'm happy to say that now I am finally feeling like me again.

I don't bring this up as an excuse for neglecting this blog a bit, or for sympathy, or for any other reason than I think it needs to be talked about more. More parents, more women, more LDS church members, more families with special needs children need to know that this can happen to them, and that if it does, it's not anyone's fault. If I can help at least one other person going through the pain I went through for so long, this is worth it. I will continue to write about my experiences with depression and how they have helped me with Bug in the future; this is an introductory post on the topic so you have some background for future reference.

(long post, so click through to read the rest)

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.

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.

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.

Where To Start

Where do I start?! This little guy is our Bug. He just passed 30 months and has taken our little family of four on quite the ride the past 7 months. We also have Mom, Dad, and newborn Bear.

Let's first rewind to March. Bug's annual well-child appointment was coming up, and we knew the doctor was going to be asking about his speech. We talked about how he was slightly behind at his 18-month appointment, and we'd follow up when he turned 2. Here he was, a few weeks away from 2, and we knew he hadn't improved much. We sat and made a list of the words Bug had. We even included animal sounds. It was a very short list. We knew that at 2, he was supposed to be starting to use two-word phrases. We were so far from that.

Time for the appointment...the doctor said Bug is healthy and such a smart boy, but we should get a speech evaluation done. No problem, that can be done right across the hall at the children's rehab office. Hearing assessment done first - perfect hearing, like we thought. Bug loved the speech evaluation: he got to play the entire time. We did a lot of talking about Bug's behavior, habits, likes/dislikes, on and on, in addition to details about his communication. The therapists loved him.


After just a few days, we got the full report. We knew he was behind, the evaluation was just supposed to determine how far behind. Severe mixed receptive/expressive language disorder. Definitely more far behind in expressive. Age equivalencies, percentile rankings, suggested treatment, good prognosis.

The two words that stuck out in the five-page report: Severe. Disorder.

We couldn't believe those two words would be associated with our sweet, smart, adorable Bug. That's when the blaming started. Maybe we were doing something wrong, not doing enough, and that's why his speech was behind.

Luckily, we have a wonderful family who helped us get over that. It's nobody's fault that Bug is behind in speech. It's just something that happens to kids. Him needing speech therapy is not a negative reflection on our parenting. If anything, the fact that we were looking into therapy was a sign that we're being good, caring, supportive parents. All of us will work together to get him caught up.

Next up, a feeding evaluation. The speech therapist felt that with his very limited diet, we should get that done to see what was up. More guilt. Another report, this time six pages. Significant feeding difficulties. He didn't have motor issues impeding his eating, just behavioral, and maybe sensory, so guess what? let's get that checked out, too.

Want to know something fun about insurance? When a child is delayed, without a medical diagnosis (like a chromosomal abnormality, physical disability, etc.), insurance doesn't have to cover treatment. They cover evaluations to a degree, so you can know what's up, but if a kid is just delayed without a "good" reason, that means they'll catch up on their own!! You don't need therapy coverage if they'll eventually catch up!! (Sarcasm exclamation points.)

Back in February, a friend gave us the contact information for Early Intervention, a state agency that offers therapy services to every kid in the state who needs them. Since it's significantly cheaper (as in free, compared to hundreds of dollars per session) than private therapy, we needed to check them out. We were so worried that Bug wouldn't qualify, that he wouldn't have a strong enough need for their services.

Evaluation day for EI came one week after Bear's delivery. By that point, we knew exactly what questions they were going to ask about Bug's development, and what sorts of assessing they were going to do with him. We'd already done it all with the speech and feeding evaluations. We handed over those results. And, surprise, Bug was being cooperative and showing off all his strengths. It may sound weird, but we were hoping they would get at least a small glimpse in person of what his behavior can be like every day, instead of us looking like fools saying "he's not always this happy! or cooperative! he really does need help!". Finally, he lost patience and started melting down. Our service coordinator said "You all certainly need the help we can offer. You are the most patient parents I've ever seen. We'll make sure he qualifies, no matter what his tests right now say."

The EI evaluation left us feeling nothing but relief. We were finally going to get Bug the therapy he needed, and we'd get the tools we need to help him be happy, healthy, and developing as he should. EI planned to get Bug an occupational therapist, who would work on feeding and also assess his sensory needs, and a speech therapist, who would work on developing his language skills.

We had the feeling that maybe his sensory needs were the root of many problems, and we were able to get in a last-minute opening with a private OT to do a sensory evaluation. Why not, the more we know about what's going on with Bug, the better. No big blows with those results, Bug definitely has sensory processing disorder. This is all along the lines of what our EI OT found, and what we had guessed after lots of Googling and reading.

Through Mom's work at schools, she was able to work with some special-needs kids. Inevitably, she'd get a question from one of the other students, something like "Why doesn't he have to sit and do this activity? Why is she doing that, I thought it was against the rules?". Her go-to answer was always "His brain just works differently than mine and yours. He needs different things." Kids are amazing, and most of them, of a variety of ages, understood and accepted this explanation.

Bug's brain works differently than Mom's, and Dad's, and Bear's, and that other kid who is his age and talks in full sentences. That's just how he is. We have learned now, more than ever, just what that means. It means we have to change the way we act and parent and teach him because his brain just works differently. It's different, it's not wrong. We won't lie and say it's easy, because it's the hardest thing we've ever done. But it's worth it, because we love our family more than anything.