1 in 68

1 in 68 is the most recent statistic released by the CDC for the prevalence of autism among kids. This specific number was calculated in 2010 based on kids who were born in 2002. The statistic is even higher among boys although many people suspect that there are many girls who are going undiagnosed because they can fake social interactions and fit in, making it difficult to determine they need evaluations.

When one child in a family is diagnosed with autism the likelihood of his or her siblings also being diagnosed increases. In our family James and Liam have been diagnosed as having autism. Their younger sister is only three months old and it is too early to know whether she will also fall on the spectrum.

April is Autism Awareness Month. Last year our diagnoses were fresh and I was surprised to learn that there is a significant amount of disagreement within the autism community about whether an "Awareness" day or month is helpful. Many people advocate for an "Acceptance" day as an alternative. Many of the bloggers I follow chose to opt out of the conversation this year because it raises so many strong emotions in cyber-space.

While I agree that some of the "awareness" dialogue is harmful because it elicits fear rather than understanding and it can be hurtful to individuals with autism (making them feel de-valued as people, the very LAST thing I want to do), I think we should be careful not to throw the baby out with the bathwater so to speak.

I think that autism awareness is a chance to educate the general public on warning signs so that they can get their own kids evaluated when necessary and more kids will get access to early intervention. James is a much happier kid since we've gotten his diagnosis because I can meet him where he is instead of forcing him to comply with my brute force (as I was doing before we found out that he has autism).

I also think that we need more autism education so that employers will consider hiring individuals with autism to be integral parts of the workforce. Unfortunately 35% of young adults with autism have never had a job or received post-graduate education after graduating college. I think the workforce could truly benefit from having individuals with autism in some key places given their attention to detail. 

In addition to employers being more aware, it would mean so much if more parents and kids knew how to talk about autism. I was recently at my sister's house and our kids were all playing outside together. My 3y/o, Liam, who struggles with communication and play skills pretty significantly, took my 4y/o nephew's matchbox cars to the back yard and was driving them through the mud and dirt. My nephew was a little upset that his cars were getting dirty and my sister handled it with so much understanding and aplomb that I needed to share. She said, "Liam feels more comfortable when he has a car. We don't want him to feel anxious outside, do we? We can always wash the car off later but this just helps him to feel comfortable playing with us." Of course my nephew responded that he didn't want to play with Liam, he was playing with James, but now he has some groundwork for understanding and playing with kids who might be different in the future. Heck, we're pretty much assured of him playing with my kids in the future. My sister's response to him actually helped me put into words why Liam is so attached to cars (he gets a little lost in people games but he knows how to play with a car) but more than that it showed such understanding and acceptance of who Liam is right now. Of course in the future I will try to teach Liam how to ask to play with the cars, how to accept if a friend says, "no," and how to be comfortable playing without cars. But he's just not there yet and that kind of teaching is better set in a therapy session or when we are at home and can handle other environmental factors. But when we are visiting cousins or having a playdate, it means so much to just let Liam be Liam.

No matter if April is Autism Awareness month or Autism Acceptance month, the reality is that autism is an incredibly misunderstood disorder affecting approximately 1% of the population. Which means if your church or school or community has more than 100 people in it there is likely to be an individual with autism present. And the question is, how will you respond when they show up? Will you take the time to learn their strengths or brush them off as weird because they aren't socially adept? I can't wait for James to have his own voice in the world but for now hear the cry of a mother who aches for her children to be accepted as who they are--sweet, joyful, intelligent kids.

Autism for us means James finding the "line of symmetry" on his pizza slice. Hugging people he's just met. Reading early. Distress when people don't follow the rules. Apologizing to the staff at the bowling alley for stepping over the foul line. Floppy arms & messy handwriting. Excited flapping. People commenting, "He seems so normal!"

Autism for us means Liam has a very difficult time with communication. Asking, "I want cookie," at 3yrs 8mos for the first time. Celebrating when he said, "NO! My turn." Confusion, frustration, feelings of inadequacy when I have NO IDEA why he's upset or what he can't communicate to me. Singing "Let it Go." Lining up cars. Sweet smiles. Jumping off the couch. Hiding under the blankets together.

Autism for us means big hugs. Big smiles. Innocence. Pure joy. Trains and cars everywhere. Avoiding large crowds (no big Easter Egg Hunts). Bringing a child's leash because I can't risk them running into the street. Panic. Worry. Tears. Getting kicked out of preschool. Trying new preschools (terrifying). Seeing them thrive in new settings. Bonding with other parents over things no one else would get (melt downs about shopping carts for instance). Celebrating milestones. Chucking parenting advice (especially anything titled, "get your child to (fill in the blank) in 3 days!" hahaha). IEP meetings. Drowning in paperwork that needs to be filed. Endless research and learning.

Autism for us means a different normal. The same intense love for my kids. The same worry about their futures. But set in a different context. My hope is that April's focus on autism will begin to remove the stigmas and misinformation surrounding autism so that my boys and other people with autism will be accepted for who they are with unique talents and abilities.

http://www.autism-society.org/what-is/facts-and-statistics/

Liam upset because he wanted to ride his "cycle bike" and he didn't understand that we had to dri ve to the Greenway to ride them.

Our family wearing blue on April 2 for Autism Awareness Day.

 

James finding his line of symmetry .

Cora Ann

One year ago was Cora's due date. She would've been one today (or around today). Missing her doesn't diminish my love for Annia and loving Annia doesn't mean I don't still miss Cora. The heart is complicated.

We miscarried in July just a few months after losing Samuel. I don't believe the Lord caused it to happen but I do know that he used that awful, heartrending loss to do a powerful work in me. I'm a better person for Cora's time on earth. Her short life wrecked my view of God and upended all of my preconceived ideas about how he works. My faith in him is stronger now than it ever was before.

I recently had a moment in the middle of a study on parenthood where I just sat back and realized that I am thankful for Samuel and Cora. For a long time I wondered why the Lord even let us get pregnant if we were just going to lose those babies. But now I think about how their value as people isn't less because they spent such a short time on earth. What a narrow view that would be. We will be a family with them in heaven.

My heart has been changed by each of my five children. My body has too. I carry stretch marks and extra pounds from the three kids who are still here. But those marks encourage me to admire and value my body. My body grew humans, birthed them, and fed them. That. Is. Amazing. And also... my body didn't grow two humans. It lost them. My body couldn't keep those two babies inside. Sometimes I feel like my body betrayed me.

Today I'm sad. I'm sad that I'm not planning a birthday party. I'm not making a special cake for my special girl. I'm not celebrating milestones like her first steps or first words. 

Instead, I'm looking at the one picture I have of her, an ultrasound print from 6w6d, just a day or two before we miscarried. I'm writing her a letter and asking the Lord to give her a hug and kiss from her Mama. I'm shedding some tears and ignoring most everyone. I'm thankful for the people who remember what this day means to me and text me to let me know they're thinking of me. And I'm planning to buy a few cupcakes to remember her "birthday" with her father.

I love you, Cora Ann. Mama misses you.

Death to SuperMom

I have a confession to make. I've been lying. If you have seen me in the last week or two and have asked me how I'm doing, whatever variation of, "I'm okay," "Doing alright," "Hanging' in there," or "Alright but tired," I've given you, it's been a lie. Most of the time I feel like I'm barely hanging on.

There are so many reasons for this, it's hard to explain what's wrong. It's been a difficult week logistically. Liam had a stomach bug the same day that Nathan had minor surgery so I was taking care of all of us... no small feat with a nursing infant. I'm tired, physically and emotionally.

There are times when I barely even notice the boys' differences. Their autism becomes part of our normal and it disappears into our routine. But there are other times when their differences seem to glare at me in the midst of a playdate and I'm overcome with sadness at how difficult the world is for them to navigate and how it's even more difficult for the world to understand them. I'm in a season of the latter, overwhelmed and saddened, always in love with my boys but mourning the reality their lives might not be what I had dreamed they would be.

The deep, swift current flowing under the surface is what this month means to me. I feel like so many of my blog posts are spent recounting the past and sometimes I worry that people may tire of that, urging me to just move on. The problem is that the past has shaped me and it's impossible to express myself today without the background of yesterday. So bear with me at least once more because I can't look at the calendar without thinking about where I was last March or the one before that. Two years ago Easter came early, the last weekend in March, and it was the weekend we miscarried our baby Samuel. A few months later we miscarried again and the due date of that baby, our sweet Cora, was March 18th. Last year, the day before her due date Liam was diagnosed with autism.

So when I tell people how I'm doing "okay," I'm basically lying. I'm not doing ok. My house is a wreck. With the exception of a few weekly church events I look like a wreck. I'm barely keeping up with house work and homework and the mom-guilt just keeps piling on. But it feels too complicated to get into how I'm really feeling when we're calling to each other from across the church foyer or greeting one another at the entrance to the women's conference. In the midst of this down season I've received a few compliments on how patient I am with my kids or how I must be SuperMom because I do x, y, z. And if there's one thing I know without a doubt it's that I'm not a perfect mother, I'm barely keeping things together. This whole thing has gotten me thinking about compliments and SuperMom. And I've come to two conclusions.

We need to change how we compliment one another. And SuperMom needs to die.

When I receive compliments and you tell me I'm SuperMom I just shrink into myself. "SuperMom" makes me feel like I'm not really being seen. "SuperMom" makes me feel like an attempt to debunk that perception will only be seen as false modesty. "SuperMom" makes me feel more alone and isolated than ever before.  (By the way, it's not like I'm hearing these comments all the time but I've heard them enough and spoken with a couple other moms who feel the same way and I feel pretty comfortable generalizing the sentiment).

When you tell me how patient I am with my kids my mind immediately recalls all of the times in the last 24 hours that I've completely lost it, "Stop. Stop. STOP. STOP IT JAMES I'M SERIOUS, WHY CAN'T YOU LISTEN?!" But I appreciate what people mean, I just wish SuperMom would stop getting the credit. She's not real, she makes me feel un-known and alone.

I've also realized that when I compliment other people I mean well but if I'm truly being honest, sometimes there's an element of envy undermining the community that could be built by such a gesture. "You're so patient,"... I wish I was that patient. "I love that outfit!"... I wish I had an outfit like that. "You're home is beautiful,"... I wish I could afford a home like that.

May I humbly offer an alternative? What if instead of offering blithe comments on how great people are, we endeavored to reaffirm the ways that people bear the image of God? What if instead of saying, "you're so patient," we tried, "I can see how much the Lord loves your kids when I watch you with them," or instead of, "you have such a nice home," we looked beyond and affirmed how we can see the Lord's heart for hospitality in them? Or I told my autistic son how I can see the Lord in the way James values steadfastness and order? 

Then, when I receive a compliment, agreeing with the person gives glory to God, not myself. Yes, the Lord does love my kids through me and he does that even when I'm not great at expressing that love. Yes, the Lord does value hospitality even when I don't. And when I extend a compliment it releases me from the temptation to feel envy because I'm acknowledging that the person I'm complimenting bears those qualities because they bear the unique reflection of the image of the Lord... And I bear a different unique reflection.

For me this is about SuperMom. For you it might be SuperDad or SuperWoman. You don't have to be married or a mom or a woman to know this struggle to be the perfect version of you. But if Jesus lives in you, that SuperPerson needs to die. SuperMom tells me I'm not enough that I will never measure up and if people really knew the real me I would be alone and unloved. But the Lord tells me that she has no place here because he has made me to reflect his image to the world.

And that image is beautiful.

Pursue the Passion: The Lord's pursuit of me

This weekend our church is hosting its annual women's conference. The conference is called "Pursue the Passion" and this will be the third conference that I will have attended since I started coming to Covenant Church two and a half years ago.

Two years ago I was mostly new to the church and I sat with people I didn't know very well. Those women would grow to become close friends but I felt lonely and broken at the time. To be honest I wasn't very impressed with the speaker but I could feel the Lord doing a big work in me. When I left the conference I knew that the Lord was calling me to die to the mother that I always thought I would be. I had this image of myself as someone authoritative, who brooked no disrespect, who would not tolerate second-time obedience because only first-time obedience was acceptable. And many of you with kids who are reading this are probably saying to yourselves, "Yea, how'd THAT work out for you?" and the truth is, it wasn't working out for me. I was carrying around a great deal of shame because I thought I was a bad mom; we were getting reports from James's preschool that he was acting out, not listening to direction, and not responding appropriately to discipline. This conference was a turning point for me and in many ways I think the Lord was preparing me for my journey as the mother of kids who have special needs. Just a few weeks later James was referred for an evaluation which would eventually diagnose him with autism. Parenting a child with autism requires a different, more humble approach. The do-it-right-now-because-I-say-so-I-don't-care-what's-wrong-with-you thing is a disaster when the child you are rearing sees and hears and feels the world differently than you do and can't verbalize that something is literally causing him pain. Dying to the mother I always thought I would be gave room to let the Lord shape me into the mother he would have me be, which in turn lets me give room for my kids to become the people the Lord made them to be.

Last year this conference came in the midst of my break from the church. I was hurting and grieving the two miscarriages we had had the year before. I was unsure about whether I wanted to attend the conference. The unimpressive speaker from the year before coupled with the $35 admission fee (quite a hit to our meager budget) had me leaning toward staying home. But a friend who does some work for the conference had been given 4 tickets and offered one to me. I decided to attend but I made sure that I would be sitting with a woman who was safe to me; she knew I was having a hard time trusting the Lord and she was also in a hard place with him. She was the kind of person that would not only understand if I got up and left the room because I was feeling bruised, she would be leading the way. 

That year Lisa Harper spoke and I just loved her. I couldn't tell you precisely what her messages were on but I feel like the crux of the teaching was on the Lord's unwavering love and presence in the midst of hard times. Just a few weeks earlier I had told the Lord that he needed to do the work of changing my heart and turning me back to him because I couldn't do it on my own. It was difficult to balance keeping my heart soft enough to allow him to do the work in me and not trying to do the work myself. But that weekend at the conference I felt the Lord tell me, "I'm doing it. I'm doing the work in your heart. It's not quite done but I haven't abandoned you; I'm doing it." It was also at that conference that my biggest hang-up with the Lord came into focus. There was a song we sang whose bridge repeated the line, "Your grace is enough for me," and I couldn't sing it. I knew his grace was enough to save me, but if that's all I have, his grace and nothing more--no family, no health, no roof over my head--is that enough? That question drove me back to the Lord. When I could say, "yes, his grace is enough," I was ready to trust him again. I realized that he doesn't promise healing from the things that plague our bodies but the things that plague our hearts. This paradigm shift is what brought me to the place where I could risk another pregnancy.

This year my 8-week old daughter will be sitting with me at the conference. She's still nursing on demand so I can't leave her for more than a few hours and I can't help but reflect on the Lord's work in my heart and his faithfulness to me over the last few years. Jen Hatmaker is the speaker and my best friend will be visiting from Chapel Hill with her 7-week old son to attend the conference with me. I know that even if I didn't have the "happy ending" I'm celebrating this weekend the Lord would still be faithful and good and loving. I trust in his goodness not because of my healthy daughter but because of the healing work he's done in my heart.

My daughter's name is "Annia Hope." We didn't come up with it. I know to many people this will sound kind of crazy but we honestly felt the Lord asking us to give her this name. Annia means "inexhaustible grace." To us her name is a constant reminder that the grace of God never ends and there is always hope in the work that he does in our hearts and in this world. We chose the name before she was born, before we knew whether labor and delivery would go well. I have friends and family who have had babies who died at full-term gestation or as the result of complications during labor. Her name wasn't some statement of faith, claiming that she would be healthy and whole-- I still have no guarantee that she (or her brothers) will grow up to be healthy adults--her name is a statement of faith that regardless of what happens to the earthly bodies of the people I love, God is still God. He is still good. And he still loves me.

My hope is in him. And I cannot wait to see what he does this weekend.

Callouses

 I'm so excited to meet our little girl in a few short weeks. I'm praying that she'll be healthy and whole and that she'll thrive over the coming years. Our home is prepared to welcome her into our family; we have packed our hospital bags, painted her bedroom, and set up a bassinet next to our bed. But Sunday, November 30th, is Samuel's due date. It's the first anniversary of the due date of our first miscarried baby. And I can't help but grieve the absence of our son.

I have been wrestling with the juxtaposition of the grief I carry from the loss of that baby and the joy I feel at the imminent arrival of a new baby. In the midst of that wrestling I have come back before The Lord with my heartache.

I talked to him about how I felt insignificant in my pain, if he is all-powerful why didn't he take action to protect me? Why didn't he intervene to save my baby? And while we were at it, what about these long-standing hurts that I've carried in my heart for years and years, where was he during those?

It's amazing to me how gentle he is with one as presumptuous as me. But he shared an image with me, of us walking side by side. My first impression was that he wanted me to know he was with me during all of those times. I won't lie to you, I wasn't satisfied with that answer. "Ok, you were with me. That's great. Why didn't you DO anything?"

Callouses. Callouses on your feet. As we walk side by side, we are barefoot and my feet get banged up. They are the feet of one who brings Good News and they need to be prepared to go to the hard places. "Ok," I thought, "for the hurts I've carried from childhood, that makes sense. But the miscarriages? Those, too?" I just felt his sorrow in that moment, we are on a journey together and there is a destination. He doesn't want my feet to get banged up, to need stitches from the deeper wounds, but the destination... it's worth it. He helps me along when my feet are tired and he bandages up the wounds to keep them from festering.

It's some mixture of images from the book "Hinds Feet on High Places" and the story of "Lord of the Rings". It's not a perfect analogy, but in LOTR Frodo embarks on a journey of grave importance. Gandalf knows the way and leads him (at least through parts of the story); Gandalf never wants Frodo to experience hurt or pain or loss, but the task, the destination is worth it. I feel like Frodo... and my giant feet are bleeding and torn up. But The Lord knows where he's taking me and he knows the destination is of vital importance.

I may not fully understand the journey that I'm on but today I will chose to trust the one who is leading me.

Lavish Love

See what great love the Father has lavished on us, that we should be called children of God! And that is what we are! I John 3:1

My life has changed so much over the last 18 months.

In December 2012 we moved into a low-income, primarily black neighborhood. There are people in our neighborhood who live without power, even during the winter, because they can't afford it. Many children will not receive Christmas presents because their families simply don't have the extra money.

In March 2013 we had a miscarriage. The pregnancy was planned, I was five weeks along and though I had only known about that tiny life for one week, he was already a part of our family. Losing him tore a hole in my heart.

Then, in July of that same year we had a second miscarriage. The pregnancy was also planned and she made it to seven weeks gestation. During the three weeks we knew about her we prayed, feared, hoped, and waited. After we lost her my heart temporarily lost its ability to hope in the goodness of God.

In October 2013 James was diagnosed with autism spectrum disorder and in March of 2014, 12 months after our first miscarriage and the day before our second lost baby's due date, Liam was diagnosed with autism as well.

I entered into 2014 wholly broken. My trust in The Lord had been shattered. I showed up to church with a smile on my face and a heart that was hard as stone. And I realized that something needed to change. I decided to take a break from church in order to work on my relationship with The Lord. My incredibly supportive husband, Nathan, continued to attend church and since he brought the boys with him, I was given a consistent weekly time to talk to (rail at) The Lord.

When I have shared about my intentional break from church in the past, some people respond by commending me for being deliberate, like taking that time is a testament to some innate goodness or spirituality in me. But that's just not the case. I chose to allow the space to get things right with The Lord for two reasons: 1) I'm a big chicken. I've always been in the church and being a Christian is a core part of my sense of identity. Leaving The Lord or the church would force me to re-define myself and that scares the mess out of me. 2) My husband is in ministry. This is his career and I know that The Lord and church will always be a part of our family rhythm and for him to succeed in his career means that I need to get straight with Lord. These are admittedly selfish reasons. I was in a pretty self-focused phase. It is a testament to the goodness of The Lord that he was willing to work with my self-centeredness to bring me back to him.

Over the course of around four months during the beginning of 2014 The Lord MET ME. He pursued me, he answered the questions that I screamed at him, and he loved me. And he invited me to trust him again. He asked me a question: "Am I enough for you? If I am all you have... if your kids die or your husband leaves you, if you have another miscarriage, or if you don't and that baby also has autism, will I be enough for you?" When I got to the point, in the midst of kicking, screaming, crying, and praying, that I could say "yes" to that question, we decided to try again for a baby.

I have shared much of this information in previous posts. But I share it again because those experiences have heavily influenced my perception of the Lord's blessings. If material blessings are from The Lord, does that mean The Lord doesn't care about the people in my neighborhood who don't have material blessings? Where was he when our children were dying? And so I've pushed, hard, against that mindset. But refusing to see some earthly blessings as being from The Lord can be equally as damaging, and we might miss the heart of the father for us.

Recently, some of my family contacted me and offered to fly Nathan and I to Colorado for a vacation. We've never had a real vacation and they wanted to bless us in that way. Upon our arrival in Boulder, we were taken to a house whose owners are out of town for the weekend. We were greeted with food to prepare for dinner, food for breakfast the next morning, a movie night basket, and personal letters from some close friends and family who wrote to encourage and love on us. We have been overwhelmed by the generosity and thoughtfulness of our hosts, whose desire is to love on us with the love of our Heavenly Father.

Their desire is to share the heart of the Father with us. And I find my heart softening toward him once again. Maybe material blessings can be a glimpse of the Father's heart for us but since our world is not fully redeemed we can also be sure that we will face hardship and suffering. The two are not mutually exclusive. Yes, we live in a broken world and death is a reality that no one can escape forever. But sometimes when we receive gifts we can begin to recognize that the same father who welcomed the prodigal son home with his robe, ring, and a feast welcomes and cares for us. Sometimes those gifts remind us that we have been adopted as sons and we have a father who loves us more deeply and truly than we could ever imagine.

Just days after we found out that I was pregnant with the baby I'm still carrying, I purchased a maternity sweater on clearance at Target. It was a scary purchase. "What if I never get the chance to wear this sweater? What if it stares me in the face as a reminder of a lost pregnancy?" But I made a choice to hope. For me a choice to hope wasn't the same as a belief that everything would be ok, but it was simply hoping they would. And believing that if they weren't The Lord would still be with me.

This weekend, in the cool Colorado mountains, I had my first chance to wear that sweater. As this baby grows, kicks, and moves inside of me and we are gifted beyond what we could have imagined, the truth of the Father's lavish love for me sinks deep in. And the ultimate truth of his lavish love is not found in our vacation or this healthy baby girl, but that we are considered his sons and daughters. These gifts are just glimpses into that amazing reality.

Autism: what it is and what it isn't

James (our 4.5 year old) was diagnosed with autism 10 months ago. His younger brother, Liam, (3 years old) was diagnosed 5 months ago. During that time I cannot tell you how many times I have heard people tell me how "normal" they seem. While I understand that most people have pure motives for sharing that observation with me, hearing that my kids seem "normal" so frequently has done two things to me: 1) it puts me in the position of feeling like I am constantly "defending" their diagnoses and 2) it has made me realize that the average person has no idea what "autism" actually means.

To qualify for an autism spectrum disorder diagnosis, a person has to present functional impairments (meaning that the impairments interfere with routine, age-appropriate expectations) in three areas. Those areas include Reciprocal Social Interaction, Communication Skills, and Restricted and Repetitive Behaviors.

Reciprocal Social Interaction evaluates things like eye contact, emotional expression, sharing toys, and joint attention (when you observe something together, e.g. when a child shows you a toy or a book because they are excited about it). Because autism is a spectrum disorder, a child does not have to have severe impairments in each area observed for the "Social Interaction" category. One child may display appropriate eye contact but may not be able to express his emotions appropriately. Or the impairments may vary in severity. Liam will engage in eye contact when he is excited about the activity but he will refuse to engage at all when he has lost interest in an adult-directed activity. Both Liam and James will engage in parallel play and some interactive play but for the most part only if that interactive play is physical in nature, like chasing each other through the house.

Communication Skills evaluates appropriate verbal communication. This category is surprisingly tricky to people who are not familiar with autism. What most people don't know to look for is the difference is "spontaneous speech" and "scripted speech". "Scripted speech" is often referred to as "echolalia." Liam's communication delay is fairly obvious; his speech is at an 18-month level and he often remains silent when people greet him or ask him how he is doing. James's delay is much less obvious; when he was first diagnosed it was common for him to repeat the last few words of a question. Many people (myself included) assumed that he was answering them. Teacher to James, "Would you like to play with the trains or the blocks?" James's response, "The blocks." Sometimes his responses might actually line up with his preferences, but sometimes they don't. And other times the disconnect was more obvious, me to James: "James, who is that?" James: "Is that."  James and Liam also show a great capacity to memorize lines from television shows and frequently used expressions. James is able to insert those phrases into conversation in ways that make it seem that he genuinely understands what he is saying. It takes a close ear and a keen mind to discern that he is often not aware of what he is saying. It's more like his brain has files of social situations and when he needs to take a mental "short cut" he just looks for a file related to his current social situation and inserts that comment. [We were once at a restaurant after a long week of travel during which James spent a whole lot of time playing with kids his age--read, he was wiped out socially. While we were waiting on our food to arrive, James got up from his chair and started to walk away from the table. When I asked him what he was doing, his response was practically monotone, "I'm just going to slip into the kitchen and have a word with the chef." He was quoting "The Emperor's New Groove" which we had watched frequently that month.]

Restricted and Repetitive Behaviors refers to a person's need for things to be a certain way. This can affect their style of play, their need for a rigid daily schedule, their ability to be flexible during transition, specific and/or obscure interests, and many other things. For Liam this category is fairly mild. He has preferred ways of playing with toys but can be redirected with mild to moderate frustration. If we allow him to play without direct adult interaction his play can become very focused and very repetitive. For James this category is a little more noticeable but only if his caregiver has the eyes and ears for it. James becomes distressed when his peers play with toys the "wrong way", e.g. putting trains on a road or cars on a train track. On the surface, this looks to many people like he is having trouble sharing, when he is actually in distress because things aren't the way his mind asserts they "should be." We have to be careful how we word things when we speak to him or we will give him an incorrect expectation of his day. Sometimes he is easy to redirect and sometimes we have melt-down city. Every day is a new adventure

Obviously, this is a brief overview, I'm not an expert and my kids are only two kids. They are not THE picture of autism. But what I hope to impress upon you is that these are three rather broad categories that can present very differently in various people. A person can be accurately diagnosed with autism and be very, very intelligent. Their restricted and repetitive behaviors can give them a focus to learn, frequently about a specialized or favorite topic. For other people, the impairments related to communication skills are so severe that they are unable to grasp any verbal communication--they cannot understand what people say to them or produce speech in response. When the communication impairment is that severe, a person with autism may not develop past an internal age of 12-18 months.

Many people have asked me whether my kids might "grow out of" their autism. The simple answer is "no." If they have been accurately diagnosed, they will never grow out of autism. Autism means that their brains interpret the world differently than "typical" people and that will never change. Many people with autism are able to learn skills and strategies for navigating the world around them, in what I think may be a similar way to the ways that people can learn and become fluent in a second language. There may come a time when you are able to "think" in that other language as if it were your first but it takes a lot of work and a lot of practice.

Sometimes I feel like our (my family's) whole world revolves around autism and I can't help but wonder if I talk about it too much. I never want to over-focus on how hard it is and lose sight of how wonderful my kids are but I also don't want to shy away from being honest about the difficulties that we face as we do our best to raise our kids. Mostly, I feel like the more information I can share about what autism actually means the closer we will be to autism acceptance.

Maybe my kids will play with your kids and you will be able to coach your kids through how to respond to James when he gets a little intense and says to your child, "Excuse me Sarah, excuse me Sarah, excuse me Sarah, excuse me Sarah." Or maybe our family will visit your family and you'll be able to anticipate the reality that my kids don't understand verbal instructions the way their peers of the same ages do... meaning they might break anything that is breakable and within reach so you'll move anything of value out of their reach, not because they are "bad kids" but so that we can relax a little and focus on having legitimate conversation. Maybe, just maybe, sharing this kind of information with other parents will help pave the way for our children's generation to operate out of understanding and acceptance rather than fear and skepticism and that one day my children will form deep friendships with some of your children.