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.

The Balancing Act

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Life has felt out of balance for me lately. I was feeling "off" for a while, and I've finally realized that's why - I don't have things in balance. I'm working on improving my personal balance with renewed goals and little improvements every day.

Of course, sometimes the hardest place to find balance is with Bug and everything autism brings to the table. Take last night, for example. I was feeling really proud of my efforts during the day (meeting some of those new goals!), and even felt like things were well in balance...until Bug woke up from his nap. He and Bear got into a fight, and just when I smoothed that over, Bug had a meltdown about the dinner I was attempting to make. I'm not proud, but I will admit that I was fuming for a few minutes (alone, after Dad got home). Sometimes, everything seems so unfair - that  Bear gets the short end of the stick because Bug's needs are greater, or that we can't go out on a date once a week (or even once a month...or once every few months) because our babysitting situation is complicated, or that we have to cook pancakes for dinner because Bug will literally scream about not wanting chicken until we relent and cook the darn pancakes.

Bug's neuropsychologist reminded me a few months ago that, really, life isn't fair and we can't change that. We just have to find balance where we can get it. Bear doesn't understand Bug's needs right now, but he will eventually. And we've started doing what we can now to give him some balance, like a weekly playgroup with kids his own age, and giving him oodles of one-on-one attention while Bug is in school. At times, we do have to micromanage things throughout the day to make sure Bug is alright (we all have bad days, Bug included - his coping mechanisms are just much different than ours), but the rest of the time we look for and take advantage of those opportunities to teach him new skills.

Maybe more than anything else, I need to keep working on my attitude. Find balance where I can, let go of the rest, and simply remember to step back to see how far we've all come. What we are learning as a family, and how each of us is growing every single day, is in large part due to Bug and autism - the very thing that can make life seem so unfair. It's truly a blessing to have him, autism and all.

Answered Prayers

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The topic of prayer has been lingering in my head for a bit, and a wonderful lesson on it in church last week really helped sort out and add to my thoughts.

Prayer is one of those things we know we should be doing consistently. That consistency can be hard, and I have had my fair share of rough patches with praying regularly, or sometimes at all, in the last 18 months or so. Some of it has had to do with my attitude; being in a bad mood or feeling angry really puts a damper on a desire to pray. Other times, though, I couldn't see that my prayer was doing anything. No matter how hard I might pray for a meltdown to end or a long-standing obstacle to be overcome, nothing seemed to change. 

We are taught that God hears our prayers and that He answers them, too. I have had experiences that have confirmed that truth to me and I know I have a testimony of prayer. Why, then, would my prayers be unanswered? Why would God not remove difficulties from my, Bug's, our, lives? Was it just not time yet?

During that lesson last week, I was given the answer to my questions. God has heard and answered every single one of my prayers - but instead of addressing our circumstances and challenges, he has (at least tried, even though I may not have let Him) changed my heart. I have felt for a long time that Bug was born with autism and it will forever (on earth) be a part of him - then why should I pray for that to be changed or removed? When I was at my wit's end and desperately needed relief, I should have prayed for that to come not from an outside source, but from within.

That is often how prayers are answered: not by parting seas or a chorus of angels, but by a feeling of peace, or a gentle whisper heard only by a single person. I was praying for a grand gesture when all I really needed, and all I ever really need, is a change of heart, a change of perspective. If I focus my prayers on what I can do and what I need to face the circumstances and challenges around me, life doesn't seem so daunting. If I ask for the Savior's aid in bearing my burdens, He will make them lighter, but they may not be completely removed.

I've also learned a lot about prayer through Bug. He loves to pray. For a while, he let us help him, but now he does it all on his own. His prayers are mumbled, somewhat unintelligible, and short, but his heart is in the right place. God listens as intently to his prayers as He does to mine or anyone else's. Bug's prayers are an example to me of how I should approach God: with a sincere heart, unselfishness, and true faith in God. I should be as eager and happy to pray as my sweet boy is.

Bug's 2014

Each New Year is a funny thing. It's just another day, time going by in its usual fashion, but to us with calendars and goals and things, it can be a big deal. I honestly usually don't think too much about the New Year holiday, but this year is different. I've written several entries the past few months about how blessed we have been in 2014. But today, I want to acknowledge Bug and all of the ways he has amazed us. In 2014, he:

• "Graduated" Early Intervention 
• Started speaking in full sentences (not just 2- or 3-word phrases) and asking questions
• Went from attending about 15 minutes of church on Sundays (usually walking around) to sitting and listening for a full 45-60 minutes, consistently, every week
• Became more flexible about going to new places and into stores he was previously uncomfortable with
• Decreased his meltdowns from 3-5 times per week to maybe 1-3 per month
• Completed a feeding therapy episode (three months) in which he about TRIPLED his accepted foods inventory and became overall better at eating meals and trying new foods (we eat meals together as a family now!)
• Showed us that he can memorize and recite books - which he can use in appropriate contexts to make text-to-real-world connections
• Learned to count to 25, and to count objects
• Started attending and loving preschool
• After over a year of take-out, is once again able to go out with our family for a sit-down meal
• Answered questions more often than repeated them (huge increase in using yes/no)
• Learned all the short letter sounds - without any help from us or preschool
• Started holding pencils/crayons/etc correctly and used them to draw shapes and letters
• Went on our first out-of-state road trip after about two years, and had a successful, fun time at grandma's for a week

I am so, so proud of Bug. The day-to-day can get tiring and discouraging for all of us: I think it's so easy to stay in the moment, focusing on the short-term goals and the baby steps - which is important, don't get me wrong - but we can overlook the major milestones. And look at all those milestones! Bug truly is our superhero. For all the work we have done this year, he has done exponentially more. We've only begun to scratch the surface on what he is capable of doing.

I'd like to challenge you parents (and remind myself), when you feel like you're not making a difference, or things are just too hard, or you feel like nothing has changed, to sit down and list all the progress that's been made over a period of time. Sometimes, I just make a mental note of the good things that have happened in a day. The time frame doesn't really matter; it's the reflecting and tweaking your perspective that can turn your attitude around. 

Here's to a 2015 full of even more milestones!

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 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

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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"

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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

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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.

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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.

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.

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.