Monday, April 14, 2014

What autism looks like to me

Autism was on my radar before Walker was ever born. I knew all the symptoms and followed the vaccine debates, so I assumed the rest of the parental world did too. I see that isn't the case. God gave me an interest because I needed background knowledge. So, if anyone wants some info about autism in general and how it looks in my pirate/policeman/racecar driver, here it is.

Someone diagnosed with autism is on the autism spectrum, and can be said to have ASD, autism spectrum disorder. The more I see of autism the more I understand that it really is a spectrum. There is a broad range of its manifestation. In the words of our developmental pediatrician,  difficulty with social and communication skills is the core of an autism diagnosis. There are many things that go along with that, however.

Social skills/Empathy
One article said:
A person with ASD will typically also prefer to stick to a set of behaviors and will resist any major (and many minor) changes to daily activities. Several relatives and friends of people with ASDs have commented that if the person knows a change is coming in advance, and has time to prepare for it; the resistance to the change is either gone completely or is much lower."

That's why a visual schedule changed our life. When it was time to go for playing to eating, or walking to bathing, or anything to absolutely anything else, my sweet boy LOST HIS MIND. When I showed him pictures of what was coming, it was completely different. He didn't always love it, but he didn't scream for hours, either.  One of God's mercies on our life was the Walker's foot barely grew from age two to age three, so we didn't have to change shoes. I can't even begin to describe the struggle that outgrown shoes were in our life. I even bought the same shoe in a bigger size but he knew it wasn't the same!  

An autistic child does not naturally develop playing/talking/social skills other kids do. They don't read social cues well. As a result, empathy is not as natural. That does not mean the child isn't kind! That is a big mind shift for many, including me. I based kindness on how one would relate to others and for an autistic child that doesn't hold water. Walker would not desire to hurt someone but he needs more help understanding how others feel at various times. He recently accidentally hurt Hayes and has told me several times how he will never do that again. It hurt his heart to see his brother hurt. It just took quite a bit for him to understand that his brother hurt and why. 

This visual thinking means he literally thinks in pictures. One well-known author with ASD, Temple Grandin, said her mind is like google images. When Walker was asked to name an object by looking at the photo, he often couldn't. For an airplane, he said it goes up in the sky. For shoes he pointed to his feet. He couldn't quite get the name of common items but knows what they are. It was so interesting to watch him be evaluated and get a little insight into how his mind works. Also, I saw that he truly has a special need. A special one. Not a bad one or sad one, but a special one. He just needs things to operate a little differently for him to function best. 

Physical contact and noise/smell/lights are overwhelming things to many on the spectrum. Walker is very sensitive to those, especially smell, and it can overwhelm him to the point that he's melting down. If all I smelled was rotten egg and someone pushed me to eat it or sit in its presence for some time, I would also melt down. He experiences things more intensely. As a result of life being just 'more' for him, I think he's always closer to the brink of losing it than most kids. He's battling lots of things that most kids don't, just to stay at status quo. 

I think that is also why brushing walker's teeth was a nightmare for a long time. It was a sensory issue, we just didn't know it. Also, he eats a very small number of foods. And when I say he eats yogurt, I don't mean he eats any old yogurt. He eats Kefir yogurt in a pouch or parfaits from Chikfila or McDonalds. End of discussion. He eats cheese but only Tilamook cheese in a rectangle package. I cannot tell you the number of times we've heard that kids will eat when they are hungry and for a child with sensory issues that is NOT true! When a smell is overpowering or the taste/sensation/texture is new, his body is screaming to him, 'don't eat that!' Before we understood this, we decided he would eat what he is served and tried to get him to try a bite of pancake. At that time he ate waffles and we thought that would be an easy transition. I'm not going to admit how long we stuck to our guns but let me just say it was long enough to realize he wasn't ever going to eat the stupid pancake with that approach. He no longer eats waffles becuase at some point he had one that hadn't been prepared the way he likes and it tasted differently than what he expected. It's no longer a safe food to him and he will not touch it. Food is a significant issue for him and our family. We don't go anywhere without packing a bag for him becuase there really isn't anything we can buy at a restaurant for him and certainly nothing at someone's house or party he will eat. Maybe cake at a party but that's not always a given either. So when Harris, Caroline, and Hayes have to eat lasagna or whatever is served, Walker gets the same dinner he always has of fruit, bell peppers, and either yogurt or oatmeal. It's to the big kids credit that they don't fuss about that. It's certainly a double standard in our home! 


The higher the severity of the autism, the more it impacts speech. Some children with ASD do not speak at all. People with autism will often repeat words or phrases they hear - an event called echolalia.

Walker went through his echolalia phase and can still memorize but not like he could at one point. He is very expressive and animated now, which is not the norm for kids on the spectrum.  He does quote large chunks of dialogue though. He is so charming that it's entertaining. He uses his pirate sword to be a guitar and re-enacts Kristoff and Sven (Frozen) singing together and it has people that don't even know him giggling. I would love to video but the actor can be a diva. :)

Challenges for Us
Life can be a challenge. Just recently was his Easter party with his class at a park, the same one where I forgot all silverware! There was lots going on and it was getting to be a bit much. He was on the verge of completely melting down. I should describe what melting down looks like for him, at 4 1/2. It can be physical aggression, screaming, throwing, or sometimes total shut down. He might close his eyes, go boneless, and just refuse to respond. All of that looks like a regular tantrum, and sometimes it is, but today life was just too much. There were new kids, parents were there, new activities, and unstructured time. All of that is a recipe for a meltdown for him. However, he regrouped and was able to participate. The rest of the party was touch and go though. He kept getting up during lunch, antsy, and I wasn't sure how much more he was going to take without losing it so I was hesitant to push the issue. When things are shaky it is sometimes like having a little ticking time bomb on hand. As it turns out, he would have handled it fine. I just am not sure sometimes what I'm working with and it's constant detective work to try and determine motivation for behavior and how much he's capable of at any given point. On a normal day, I know those things. In a new environment, I'm still learning. At bible study recently,  the kids went through the halls with Palm leaves, announcing that Jesus was coming. I saw his class walk by and my stomach dropped because I could foresee that it might be an issue. He had a rough day in class and the rest of the day was rocky. It was a change in schedule and that causes him anxiety that is difficult for him to shake and the ripple effects last awhile. But it is getting SO much better.  The year he was two was very challenging. Hayes can be a handful but I think numerous times/day how much easier this is! Hayes is having developmentally normal issues. Walker was/is not and I didn't handle it correctly. Having other professionals on our team and gleaning insight from a wide variety of sources has been so helpful! I can generally take him anywhere with me now and it's ok. I cannot leave him in any environment, but I can take him places. I remember that almost every single time we would pick Harris up from school when Walker was 2-2 1/2, he would have an enormous screaming episode over something. Now I realize, it was a loud place and he was overstimulated. Then I just thought he was plotting to make me lose my mind.

This is one reason why I struggle so much with how to parent this little guy. When he's acting out, I'm constantly trying to figure out his motivation. Did he scream because he's overwhelmed? Because he's being defiant? Or is he defiant because he tried so hard all day to keep it together that he's falling apart in a safe place? Or all of the above? You can't separate Walker from his autism, because it is the filter though which he experiences life. I am thankful for his diagnosis for many reasons, one of them because it gives me a common ground to talk to his other caregivers about his needs, without them thinking he's a bad kid or I'm a bad parent. We have both definitely experienced that and I am very grateful that this gives him a chance to be heard and his needs taken as valid. His needs are valid. By recognizing those and creating an environment to meet them, he can do anything any other child can and I am so proud of how far he's come this past year. He is truly unrecognizable from where he was. He's doing life wonderfully and with his own special flair. At the end of the day, Walker is just Walker and I would not change him. Some of his biggest challenges go hand in hand with some of his most unique traits and I know God will use those in an exciting way. I've had a rough week this week and God has been faithful to give me encouragement and remind me that's He's gone before in all things and he's got this. When I dropped Walker off Easter Sunday at church, it was not looking good for too many reasons to list here. I almost just went home. I was trying to briefly explain some of the things his teacher might encounter and how to handle them. It was someone I've never seen before and we just started going to this church, which is enormous. I never said the word autism and his teacher couldn't have possibly known that about him but she told me, with an understanding smile, that her son was on the spectrum and she knows how to handle sensory issues. Tom and I were out to dinner the other night. The place was packed so we ate at the bar and a lady was standing behind us, forced to stand too close because she had no room. Since we couldn't have a conversation without her hearing all of it, I started talking to her. Turns out she is the coordinator for the mothers of children with autism group in San Antonio and couldn't have been more welcoming. I went to their table later to say hi and ran into a woman from his dr's office that administered all of his testing, who saw Walker's heart and was so touched by a kind gesture he made to her that she cried. Not everyone sees that in him.

 There have been several other things along those lines of just little bits of encouragement to me. The other day Walker was flipping out completely and past all reason. When he is at that point, he runs to his room and sits in his closet with a blanket over him for awhile, then when he's settled down he comes out and is ready to talk through it. Hayes followed him that day and I don't think Walker knew it. Walker slammed the door as hard as he could with Hayes' fingers in the hinge side of the door. His pinky instantly swelled up, it started turning crazy colors, and there was a huge chunk of mangled skin down the meaty part of his knuckle and he was screaming at the top of his lungs. I immediately started rounding up shoes to go to the ER and had my hand on Hayes' head praying out loud, pleading, for God to take away ALL of his pain. Every last bit. Within 60 seconds Hayes stopped crying and has not cried about his finger since. He has kept it curled to his chest and hasn't used that hand, but he's not shown that it hurts, either. When we got to the ER, it looked so awful the lady checking us in winced and said to just go back. The guy taking the x-ray didn't want to touch any part of his hand for fear that it would be too painful. Walker was still freaking out but Hayes was calm. He told people hi and cheerfully waved like normal. 

The reason this is so encouraging is that it can be painful to watch my other children take what comes along with some of what Walker brings to the table. It has placed limits on our life that aren't normal and it requires them to give of themselves often and get the short end of the stick sometimes. God took away Hayes' pain. It's a reassurance for me to hang onto that this isn't hurting them and it won't impact them negatively. Walker was created exactly as he should be, as were all his siblings, and they are all being shaped by these experiences for their good and to be used for God's glory. It's been a rough week and writing this has helped me see God more clearly in this with us. 

I think our family has it pretty easy, compared to other families with kids on the spectrum. Walker is high functioning and can and will do normal things other kids do. He just needs more support backstage and an understanding teacher. And even with that, it is very difficult some days for our family and I know for Walker, too. He was at an event for him that was supposed to be fun and told me it was 'loud and dangerous' and so we left. We are all learning what works and what doesn't. I never want to limit his experiences and consequently limit his potential but I also don't want to set him up for failure. It's trial and error.

With that said, I would not change him. My prayers are for insight and wisdom and certainly for great teachers for him but never to change him. I am honored to be his mother and so proud of my sweet, funny, courageous, vivacious little boy!

That is what autism looks like to me.

"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

Deut 31:8

Saturday, April 5, 2014

Then a child fell out the sky-My Messy Beautiful

My husband Tom and I have three biological sons. One year ago, they were ages 5, 3, and 1. One night, we heard about a child that needed a home. We were not in the adoption process. It was any ordinary Thursday night. Except that it wasn't. That was the night our daughter fell in our laps. I told my husband about the situation because I'd never heard of anything like it before. 6 kids 6 and under, all being given for adoption by their biological parents. I never expected him to immediately claim one of those children as ours. That was nine pm on a Thursday night and at 8:30 am the next day, Caroline came home. This is our messy beautiful. one year in. 

We are in front of the judge here, making it official! Messy.beautiful, right? :)

This past year has been one of very heavy hearts because adoption always, ALWAYS begins with losing the most precious thing a child has. I think before I lived this I would have looked at Caroline's situation now and thought, "What a lucky little girl." That couldn't be farther from the truth. She's not lucky. She's lived a difficult life and it's been made more difficult by choices beyond her control that landed her in a household full of perfect strangers at age 5. Would anyone want that for their 5 year old? It's been a life of turmoil, neglect, and abandonment. She's not lucky. What she is, though, is the recipient of God's lavish grace, because her heart is not hard. She is giving and kind and faces each new days with a resilience and pluck that adults admire.

She keeps getting up each day, with a smile, and embracing the next thing. She didn't know a letter or a number at this time last year and now she reads like a boss. That girl is determined to do what is put in front of her and she works until she does it. She couldn't even sit on a swing and now she rides her bike at alarming speeds.

But that is not what makes her special. What makes her special is her heart. She loves freely. She is the first one to help a sibling. She seeks out someone else that is unsure and instinctively knows how to comfort them without it being obvious. She knows how to be a friend even though she didn't have that modeled. It's innate in her. 

And in the midst of this, there were many, many times this past year where I didn't think our family would make it. I don't even know what it would look like for our family not to make it, but I just knew we couldn't possibly keep going like this. This is without a doubt the hardest thing I've ever done. 

 It's hard to describe why adoption is so hard.


That's not true.

It's hard to describe why it's so hard without making myself sound like a monster. A friend was telling me a story about her college roommate who had scoliosis. This girl was amazing, an athlete, valedictorian of their class, and so on. Every morning at 6 am this sweet girl would get up and take off the back brace she had to sleep in. This made an enormous racket as the pieces of Velcro running the length of her back were ripped apart. Who wants to be the jerk that's annoyed with the awesome girl over her BACK BRACE, of all things!??!? No one, but you still wake up to Velcro ripping everyday. That's sort of what our last year has been. Caroline is gracefully overcoming everything in her path and I am still struggling with hearing the velcro. I try to be careful with my words on this blog always keeping in my mind that my kids might read it one day. At the same time, I never want to sugarcoat the truth and make this all sound seamless, which is apparently how it can look sometimes. Painting that picture minimizes the beauty of the work that God is doing. Let me just say that anything at all that you see in me or in my relationship with Caroline that is beautiful is Christ in me. It is not me. 

This picture is amazing, isn't it???!! We look alike and we look happy. God did this. He set the lonely in our family. He empowered us to say yes to an unbelievably crazy situation. He is making us family. He is healing her in spite of my many and repeated screw ups and is sanctifying me in the process. This past year I have messed up more than anyone will ever know and God has shown up more that I've ever seen him in my life. He loves us when we're not loveable and when we don't deserve it. That is amazing grace.

This is my messy beautiful.

"Let us hold on to the hope we say we have and not be changed. We can trust God that He will do what He promised."
Heb 10:23