Back in the saddle

  I've been thinking lately that some of the things I do may make people think, "She's a crazy lady." And yes, a little, but that's not the point. I took Scout to the bank yesterday, where he loves to go in and say hi to Aunt Sari, and try to take as many suckers as possible from her cup. When we first walked in and someone said hi to him, he growled and gave his scariest glare. I didn't think that was a bad sign, because that is often the way he greets people. We stood in line until Sari was available, and he prepared to abscond with her entire cup of suckers. He filled his hands with about twenty suckers, and screamed and kicked as I tried to take some back, telling him we needed to leave some for the other kids. During the wrestling match, he threw all the suckers across the floor, throwing himself to the floor in the process. I took him out, kicking and screaming, and we went home, where it took an hour to calm him down (Well, it was really more him running out of steam, as he passed out on the living room floor). Later in the day, after he had a great nap, I thought we'd try again, as I still needed to get some money (this is where the crazy lady part comes in). I talked to him on the way about how he could only have one sucker and prepared him for that eventuality. We got up to the counter where the teller handed Scout one sucker, spilling a few in the process. Normally, Scout would have grabbed all of the spilled suckers, laughing his evil laugh or saying, "Ha, ha, ha!" But he picked one up and handed it back to the teller. He didn't throw a fit. He didn't try to attack anyone. He happily took one sucker! As tears came to my eyes (crazy lady again), I felt like I had won a huge battle. 
  I thought the tellers were probably wondering why I had brought him back after the explosion we had earlier. I realized that I'm the "get back on the horse" kind of person. Why? Why get back onto a horse that continues to buck you off? Why get back onto a horse that occasionally, or not so occasionally, pulls your hair or bites you? Why keep trying for that elusive amazing ride when the horse seems determined that you will not win? Partly, it's the previously mentioned Viking blood, that is 99.9% stubbornness and determination. But mostly, because I believe I will win, even if it's eventually and with many battle wounds. I have to keep believing, don't I? That's one of the biggest parts of my job being a mother to my Toli. 
  After what happened at Wendy's in Jackson, most people must think I'm crazy for ever trying to go to a restaurant again. We went to Arctic Circle recently, where Scout was running around the play area, making a lot of noise, having a blast. I looked over to the other families whose kids were playing too, and started getting nervous. I took out some cards I have printed up from an autism website that explain things and gave them to the families. They read them, laughed, and said, "Our kids are having a great time playing with him!" I had to turn around so they didn't see the tears (yes, I'm a "big fat baby", as Scout loves to say). That is why I keep trying, keep saddling up. There are good people, understanding and compassionate people. There are times when Scout succeeds and controls himself. There are times we get the ride of our lives!
  I have to hop back on, gritted teeth, cowgirl gear on (for protection), reins in hand. Sometimes I have to spur that horse to get him to go which way I want. Most of the time, I have to hold on for dear life! He will buck, and grunt, and paw at the dirt, and snort. But sometimes, on the full moon, or when the stars are aligned just right (who knows, I'm trying to figure this out), he will nudge me softly with his nose and let me pet him behind the ears. As Scout sat by me the other day and put his hand on my hand, I knew it was worth it. I knew I would continue to pull out the saddle and get ready to ride. I will continue to look like a crazy lady as I attempt to teach this stubborn horse (I'm sure the Viking blood is as strong in him) how to get along with a society that doesn't see things the same way he does. 
  So if you see me around, dusty from a day's worth of being bucked off, with maybe some tear-streaks in the dust on my face, and you wonder why I keep trying after so many mishaps, know that, even though I am a little crazy, I will keep trying for my Toli because that is what he needs me to do. He will learn to go the way the reins are pulling him, to wear a saddle without fighting, to hold a rider without bucking. But I know sometimes, I will just have to let him run and be the wild mustang he is!
                    Hi ho Silver, away!
https://www.youtube.com/watch?v=MEJWoGUxnxQ

Say goodbye to the world you thought you lived in...

  Songs have really been affecting me lately. This one, by Mika, is "Any Other World." I was driving and listening to the song in the car as the words "Say goodbye to the world you thought you lived in" came on. Well, then came the tears, many of them. I realized that many times in a day I have to say goodbye-  to the world of "normal" kids, to the life I thought my boy would have, to the dreams that come to every parent when their child is born. 
  That particular day, it was a hard goodbye. You see, I had been operating under the delusion that Scout could play like the other kids, be part of the neighborhood "gang". This summer, I have enjoyed being able to let him go to other kids' houses for short periods of time (as long as big sis was with him), and ride his bike up and down our street. I have appreciated the bravery of other parents as we try this little experiment. I have only had to go get Scout a couple of times as his ninja self took over in the house of a friend. All in all, I have been elated at what I thought was coming out of the woods of loneliness for him, of not being allowed to be like other kids. 
  I had to say goodbye to this idea I had, this delusion of a normal childhood for my special son. We pulled in the driveway after speech therapy, and he saw some friends riding bikes on our street. He jumped out of the car and onto the bike that is two sizes to big for him (he got bored with the smaller bikes and wasn't happy until he had one he had to jump up onto). As he rode off to join the other boys, I yelled to him to stay on our street, which he normally does just fine. I went inside to have the breakfast I had so badly missed that morning. After a few minutes, I couldn't hear Scout anymore, so I went out to check on him. I couldn't see him or hear him anywhere (the Tarzan noise serves well as a locator sometimes). I got in the car, thinking he had probably followed his friend to his house. I looked there, and other friends' houses, with no luck. I came back home thinking he had probably made his way back, and found a police car in the driveway. I saw Scout's bike and was relieved he was home. The cop asked, "Do you know why I'm here?" and I thought "Of course I do," but asked him what was wrong. He told me Scout had gone to someone's house and had bitten the child, kicked and spit on the mom, and ripped a screen door. He said when Scout saw him pull up, he headed home screaming and crying. When the cop said he'd like me to follow him to the house, I told him I needed to calm my child down first. 
  In the house, Scout was crouched on the stairs, shaking and crying, saying he didn't want to get arrested. His awesome big brother Oliver was trying to comfort him, but he was sure he was going to jail. I tried to reassure him as my heart broke. After calming him down, we drove to the house. The lady there was pretty shaken, and said Scout was going crazy and she didn't know what to do. I tried to explain (without excusing). It turned out that the boys said they were going to one of their houses, and Scout was trying to get them to stay and ride with him. They kept telling him to go home because they knew he was supposed to stay on our street, but to him, that was rejection, which he doesn't take well at all. He was hurt, and that quickly turns to anger in him, and he doesn't know what to do. 
  The cop was helpful, though (hopefully you detect the sarcasm here), explaining to me that this behavior was unacceptable . I said, "Obviously," but he thought a mom on the verge of tears needed lecturing. As he took down Scout's information so he could "go over things with the prosecutor", I kept thinking, "This won't be the last time." 
   Say goodbye...
  I had high hopes that the summer would be spent with many hours of behavioral therapy (the experts suggest 30-40 a week), and that the behavior problems would be well on the way to being fixed. After spending all summer trying to find this therapy and a therapist that could travel to our town, I have made little headway. It doesn't seem right that living in a rural area automatically dooms your child. I have been able to find speech therapy in Soda Springs, and an occupational therapist that travels from Afton. But still no luck with the behavioral therapy. The only agency in Pocatello that would even consider coming here said they couldn't just do it for one child. Well, now starts my crusade to educate parents of other kids that this therapy is available and get the therapist here. So much fighting to get him what he needs, what, in other areas, would be simple to obtain. I know we will get there, but I hear the clock ticking and know we've already lost precious time.  
  So, I battle on, having taken up the Armor and Sword of Motherhood, the heavy mantle of Mother of an Autistic Child. I have Viking blood-  I'll be ok (is what I tell myself a thousand times a day).
  Bryce and I were in Sam's Club the other day, blissfully alone for a rare "date", when a young man caught my attention. He had some of the same "tics",  facial expressions, and noises as Scout has (I now have "Autism radar"). I watched as he behaved in much the same way as Scout does, and my knees nearly buckled as I had a vivid realization-  Scout isn't going to outgrow this. When he's this boy's age (probably about 13), he'll still be autistic, he'll still be different.
   Say goodbye...
  Bryce and I have talked before about the grieving we go through. I think anyone with a special needs child would understand this, but other parents may not. Every day, many times a day, is like a death. We grieve for the life we thought Scout would have when he was born. We grieve for the child we thought Scout would be. We grieve for the many moments of loss (lack of affection and connection, loss of a normal childhood, etc). Our grief is daily, and constant. It is painful. We strive to give him a better chance, to reach him, to be patient with him. But our lives are a continuous journey through the stages of grief. Just when I think I have reached "acceptance", I find myself back in "denial". I must really hold onto that stage, denial, or the reality of things wouldn't constantly come as such a shock to me.
  I hold onto the hopeful things, as every parent of a special needs child must do. Yesterday, Scout rubbed my arm. When we went to his class to meet his kindergarten teacher, he didn't flip out when she patted him on the back and shook his hand. He looked into my eyes, and smiled. 
  Then comes another moment of reality, grief. I have to say goodbye again...
Listen to the song here: https://www.youtube.com/watch?v=-JRvviNXmWY

  

Scout's rules

  After spending time at a family gathering this weekend, I realized more fully that everyone needs to be made aware of Scout's rules. I'm trying to help you out here people, but if you choose to break or ignore the rules, you're on your own! 

          Personal space- use it or lose it baby!
          
          I am not stupid, deaf, or a baby, and being talked to like I am really irritates me!
          
          When I make noise, it's to alleviate the overwhelming anxiety I'm feeling from sensory          
          overload. Telling me to be quiet or saying "Shhh" does NOT help!

          If you ask me to give you five or "knuckles" and I don't, count your blessings-  I see 
          that as your ok for me to slap or punch you in the face or groin!

          I am going to run around, jump, flip, and have random "ninja fits"-  I suggest you stay 
          out of the way!

          I have a mom-  let her do her job!

          If you tell me to not to do something, I'm going to do it more, harder, and louder!

          Pick your battles-  is it really that important if it will cause me to scream or punch
          you? If you think it is, let my mom deal with it!

          Distraction-  it works! If you get me interested in something fun or cool, something 
          that challenges me intellectually, it works better than telling me no (unless you try to
          talk to me like I'm a baby. I can smell condescension a mile away)!

          Don't touch! I don't like to be touched most of the time (Unless you're my mom, this
          DOES apply to you)! If you feel the urge to hug me, cover your groin! If I feel like
          hugging someone, I'll let you know!

                              

                                                     Rule #1:VERY IMPORTANT!!!!!
            Don't tickle me! I am already being bombarded by so many sensations that my brain has trouble processing, and tickling me is the worst thing you can do! My brain has trouble tuning out sensory input that your brain does automatically (the sound of kids playing when you're on the phone, the wind or feeling of your clothes on your skin, the bright sun, etc.). All of the sensory input in my environment comes at me without being filtered, and is felt/seen/heard many times more strongly than it is for you. Tickling feels more like an assault to me, and pushes me over the sensory edge. Please, even though it may be a common thing to do with other kids, remember not to touch and tickle me. I'm not like other kids. (I'm pretty sure I'm better!)

                                               Thanks so much for loving me!


          
  
          

          

          

Shine Your Way

  Another post inspired by a song- "Shine Your Way" by Owl City. I love this song, and it reminds me so much of my Toli, because that is how he goes through life, shining his way. There are some people that can't handle his shine, however. We were in Jackson last Sunday and stopped at Wendy's for dinner. We had had a long day, going on a hike past Inspiration Point at Jenny Lake. It was made longer by the heroics of my awesome husband and teenage son. There was an autistic boy who had gotten away from his 70-year-old grandparents, and just kept going on the trail. We were hiking just behind the grandparents, and they kept asking the people coming down if they had seen the boy. They would say, "Yeah, he's a long way up," or, "He's got some legs under him." It was obvious that the boy didn't know how far away from family he was getting, and didn't understand the consequences of that. When it became clear that he was in trouble, Bryce and Oliver took off running for him. After two miles, and passing a couple of forks in the trail, they found him. He was fine, and having a good hike. Bryce tried to teach him how important it was to stay with family, and hopefully that will stick with him. They brought him back to his grandparents, who were so grateful. Bryce and Oliver are the type of men that run to help, and I'm so proud of them for that. We also see deeds like that as putting money in the Karma bank-  that when the time comes for us to need help with Scout, there will be someone there to do it. We were feeling good about life after that. Scout had a good day. He was tired and hungry, but doing well. Then came Wendy's. 
  We were happy about how well Scout was doing at the restaurant, especially given how tired and hungry he was. He walked around in circles, but wasn't touching anyone, grabbing food or butts, or getting in people's faces (Yay!). He made a couple of noises, but not his Tarzan yell, and he tried hard to be quieter than usual. One noise came out because he got the wrong toy in his kids meal and got in line to ask for a different one. He was getting anxious waiting, and let off some steam (again, more quiet than usual, and short-lived). After that, he ate some more, did more laps around the restaurant, and came and sat on the table next to us. He was just sitting there when a random customer came up to him, grabbed him by the arm, got in his face, and yelled at him to get down and be good. I stepped in and told her to back off. She told me that I needed to control my kid because he had been running around screaming. The Mama Bear in me wanted to rip her head off, but needed to comfort my little one instead. Encounters like that shake Scout up and hurt him immensely. I took him and started getting ready to go, while my Hero, Bryce, stepped in to "educate" this woman. He tried to explain to her that Scout has autism, and she said that didn't matter, he should be able to behave appropriately in public. No matter what Bryce said, telling her about the extended seizure that damaged his brain, the tumors and surgery, and the seizures, she kept saying the same thing, adding that "Even mental retards can behave in public." She told Bryce she is a pediatric nurse, which he didn't believe. He told her that asking a kid with autism to behave perfectly in public was like asking a paraplegic to get up and walk. She stuck to her guns and her flawed opinion, saying she had had a bad day, and Scout had made it worse. I guess it didn't matter to her the bad day she had just given to a five-year-old with special needs. 
  Luckily, as we left, we saw that the truck the woman had come in had a sign on it advertising her business, Nature's Garden, a landscaping company that services the Jackson area. As we followed the trail with her name, Chris Shirk, we found that she is a nurse, and works as a case manager for the Senior Center of Jackson Hole, working with the elderly and disabled. I got very sick to my stomach when I found this out. I called her supervisor, verified it was the same woman, and proceeded to tell her about her behavior. She said she'd never seen anything like that from Chris, but I told her if she felt fine acting like that in public, it's concerning how she would act in private with a patient, especially given her attitude towards those with disabilities. I don't think the supervisor will do anything, but I'm not done yet. I plan to make sure everyone in her area knows how she feels about and treats people with special needs. We tried contacting the police there, who said that it was horrible, but legally they could do nothing. We felt like it was assault when she put her hands on him and got in his face, but it doesn't fit the legal definition. For someone with autism, any touch can be an assault, but for her to grab him and yell in his face, that is the same as a slap. 
  It is heartbreaking to think that for the rest of his life Scout will encounter people like this. We are so blessed to have amazing people in our lives, that care about him and are patient with him. When we go to the store, all the people that work there know him and go out of their way to say hi and are genuinely kind to him. We forget how lucky we are with the people in his life until we are faced with ignorant and bigoted people like Chris. I cry just thinking of the things Scout may face in the future, especially things I'm not there to stop or comfort him after. I hope when those times come, we have enough in the Karma bank, and that someone will step up and stand up for him. 
  As I said before, Scout shines his way through life. He lights up everywhere he goes. His smile can move mountains. I know he will always have that shine, and I depend on it. I need it like flowers need the sun. I am blessed to have that, to have him. 
                      "Now I can see you are the one sent here to show me the way.
                            All of our tears will dry faster in the sun. Shine your way."

  For the people who think Scout's shine is a little to bright to handle, they can either look away, or go blind! Or, they could look, see, and grow...
To hear the song: https://www.youtube.com/watch?v=LJDdHn1S9eU

Communication is architecture

  There are some lyrics in a Poe (the singer) song that I like: "Communication is not just words, communication is architecture." I recently gained a new insight into those words, thanks to my Tiny Toli. He has always loved to build with blocks. He would spend more time doing that than anything, sometimes an hour at a time, and would build these amazing cities. There were a few times that what he built was a little unnerving for me. Each building was exactly the same, and each was exactly the same distance from the others. I looked at his creation in awe, wondering how he could be so precise, so purposeful in what he did.
  I saw another aspect of his deliberate building the other day when he came and asked Valkyrie to play with him. He tries really hard to play with other kids, but doesn't seem to understand play the way they do. I am so encouraged by his constant attempts, though. Valkyrie went into his room with him, where he had dumped out the Lincoln Logs and toy cars (which he has always played with by lining up and putting into patterns). I told Valkyrie before she went in to let Scout tell her what to play. It's usually her leading him, telling him his part and what to do. He doesn't understand pretend play, as is common in autism. So I wanted to see what he would do if he were the leader. I watched quietly and secretly in the doorway. He had set up a little building out of the logs, with cars lined up in patterns in and around it. He started trying to explain to Valkyrie what it was, talking about the cars with words like "he" and "she". He had a hard time explaining, and Valkyrie had a hard time understanding, how his "game" was supposed to work. After a bit, things went back to how they usually are, with Valkyrie leading the play, and Scout happy to play along.
  The words from the Poe song came into my mind. To Scout, architecture is communication. He expresses many things with how he builds, the patterns, the shapes, the complexity. It is a new language for me, but I am trying to learn it. I am so proud of a big sister that tries to listen to and learn his language too. Even though he frustrates her at times, she still tries to communicate with him, and always includes him in everything, letting him tag along to play with friends and ride bikes. I hope someday he will understand all that she gives up for him and all that she does for him. She is without a doubt his best friend. The first words he says a lot of days when he wakes up are, "Where's Valkyrie?"
  As I watched her try to learn his language and his play, I felt so proud of the compassion she has in her. I told her how important she was to him, that she's like his "play therapist." We named her Valkyrie, knowing that she had a valiant and brave spirit. The Valkyries of Norse mythology rode winged horses to the battlefields to take the soldiers to Valhalla. Our brave Valkyrie rides on her own angel wings to carry her wounded brother to a place where he is safe and loved-  her heart. He never doubts that his big sister is there for him. As I mentioned in my first blog post, when Scout stepped up and told God to "bring it on," I stepped up beside him. I know that my little Viking girl stepped up eagerly by his side too, and assured him she would look out for him.

  I thank all of those who also stepped up, and who step up now, to look out for him. I thank those who are trying desperately to learn his language. If we try to see it through his eyes, to see that communication is architecture, and that he has been trying to show us his world all along, we will learn. It takes looking as well as listening. But most importantly, it takes feeling.

"Little Guy"

 As Father's Day approaches, I have been thinking a lot about my Dad. I have been so blessed to have him in my life. To have the dances (with him twirling me around like a princess), him rocking me in the rocking chair, playing Neil Diamond's "Holly Holy" for me (which he told me Neil Diamond wrote for me-  and I believed him), the constant praise and appreciation for all I did, the way he taught me that I was priceless and worth being loved and taken care of, and all the love and support he's given me over the years, especially now, as I struggle to be the best mom I can to a child that takes more patience than I think I have sometimes. Dad is right there, telling me how amazing I am, making me feel amazing, and giving me the strength to push on, to do better. Dad, I hope you know how thankful I am for you in my life. You saved me, you give me strength. 
  When we were meeting with the psychologist for Scout's autism assessment, she asked if there was anyone in the family that Scout reminded me of. I immediately thought of my Uncle Guy. I remembered him from when I was a child as a man full of energy, and sometimes anger. I remembered watching him playing baseball, getting upset over something, and taking after someone with a bat. He had his nose broken in so many fights. I laugh as I think of these things. It would always be like "There he goes again," and everyone would laugh and watch the entertainment. Then after the fight, he would be over it, and the person, or people, he fought with would be his friend again. But everyone knew, could see, that he had the biggest heart there ever was. He loved with a fierceness, and it was easy to see that his family meant everything to him. I knew walking in his house that I was welcomed and loved. He had a smile that could light up a room, and smiling blue eyes. Wherever he went, he lit it up, he brought sunshine. 
  My Uncle Guy, my Dad's brother, died from a brain tumor almost 20 years ago. He fought the hardest fight he could, and won, because he gave all of us the gift of his example. He showed us how to keep your dignity when the battle was being lost. He showed us how to smile through the pain, laugh in the face of death. He showed us that a family's bond will never be broken. We were all better people because he was in our lives.
  Whenever my Dad comes to visit and is around Scout, after a few minutes, his eyes start to tear up, and he says, "He's just like Guy. He's a 'Little Guy'." He tells me that Scout looks just like Guy did at that age, and has the same blue eyes and smile. Guy was like my Dad's twin, even though Guy was a little younger. They did everything together, even the stupid things (a story about sheep shears and cutting each other's hair comes to mind)! They were inseparable, partners in crime and general hell-raising. They were also each other's best friend. When Guy died, a piece of my Dad's heart, a big piece, went with him. It was as if my Dad lost a big part of himself. It was heartbreaking to watch and not be able to fix. 
  But isn't God amazing Daddy? A piece of your best friend, your brother, was put into Scout and sent for you to fill up that empty part in your heart. Look at that smile, those eyes, that spirit. He has that energy, and yes, sometimes the anger, but he also has that heart. Another thing I see in him is the passion and stick-to-it-iveness that Guy had. Scout will work at something, for hours or days, until he gets it figured out. He has had problems in his brain, too. Two tumors were removed, and luckily, not something that would take him. But we saw the strength in his fight to heal. And the smiles and laughs through it all, as if the ones around him were suffering more than he was, and he needed to cheer them up. That is how Guy was. 
  Guy was so lucky to have you in his life, too. You had his back. You were his best friend. He knew he was loved and that you would do anything for him. I had a thought recently that I wish Scout had someone, a brother, a twin, like you were for Guy, to have his back, to journey through life with him, good times and bad. Then I realized-  he does! He does have you in his life, and I know you will look out for him, help him (even when it's embarrassing-  like the time at Arctic Circle that he was running and jumping across tables!). Our family circle is strong, both here and beyond, and looking at Scout, it's obvious that we are all connected.
  I hope you see Papa, what a gift we have been given in this little boy. When you look at him and tears come to your eyes, I hope that they are tears of joy. I hope that seeing your brother in him brings you happiness, knowing that Guy is still with you, in more ways than you know. Isn't it beautiful? Isn't it divine? 
  This "Little Guy" loves you, in his way, which is fiercely. Thank you for seeing him for the amazing spirit he is. He is lucky to have you in his life, as we all are. 

I love you Papa.
 Your firstborn,
    Hookemup  
  

Tarzan is autistic!

  I have been thinking about this post for a while now. Scout's stereotypical autistic behaviors (noises, hand movements, eye-blinking, etc) have been getting worse. It's easy to see that he can't help it. It seems like the noises help with his anxiety, like a pressure valve. He uses it most often in crowded places (like stores, etc) and when there are a lot of people. You know, the kind of places you really would like a child to be quiet (concerts, awards ceremonies, church). The more people and noises there are, the more anxious he gets. The noise he makes the most is like a higher-pitched Tarzan yell. It always gets "the looks" from people. Some are even so helpful as to say things like, "Oh, I hear Tarzan, " or to do the yell back to him. I cringe, realizing that will unleash another volley of sound from my never-out-of-air boy. Then, as usual, there are people who try to help, telling Scout "Shhh," or "You need to be quiet." Are you people trying to kill me, really?! Or maybe send me to the Looney Bin?! I'm ok with his noise, and his need for it, so why can't you be? Can't we all just get along?!
  I know that it is ear-shattering. I know that it's disruptive. But until we can find something to help him with his anxiety that isn't so inconvenient for those around him, we'll all just have to deal with it! 
  It hit me one day-  Tarzan must be autistic! There's the noise, obviously. Then there's the constant need to swing from vine to vine, tree to tree. The lack of social skills, inappropriate gestures and grunts. He also has no understanding of personal space. I think he grew up in the best possible environment-  the jungle. He fits right in, no one telling him, "You need to be quiet here." He's a happy guy, that Tarzan!
  Scout is noisy. He can't go very far without doing a somersault or flip, or without climbing absolutely everything. He tends to have mannerisms that put people off. He LOVES to get in your face! But, unfortunately for him, we are not in a jungle. While we are attempting to teach this little wild-man how to fit in in a non-jungle environment, please be patient, and look at that smile. He's a happy guy! My boy, Tarzan!

     AhhhAwwwwAhhhhAwwwwwAhhhhhhh!!!!!!!!
  

Stupid kid!

  We usually get a lot of dirty looks when I take Scout out in public. People will give them to me and to him. It's like, "You need to discipline your kid!" and "You're a bad kid!" It hurts my heart, especially when people speak harshly to him. I wish they understood that he really is doing his best. He makes noises-  loud, sometimes ear-splitting, and repetitive noises. He likes to touch people, and lately seems to be unable to keep himself from smacking girls on the butt. He gets upset and throws things. I understand completely why a lot of parents with special needs kids keep them at home most of the time. But that doesn't help Scout at all. It is a trial, but necessary for him to learn how to behave in public. 
  But there are always those people.
I got a button for Scout to wear when we go places. It says, "I'm not misbehaving. I have autism. Please be understanding." It has helped a great deal. When people read it, they do have more understanding, and we get a lot fewer mean looks. 
  But there are always those people.
We were at Oliver's track meet last Saturday (Way to go Oliver, beating both your prior records!), and Scout was getting more and more agitated, starting to throw dirt and rocks, getting in peoples' faces. We were getting the usual mix of patience and exasperation from people. It got to the point where I needed to hold onto him so he didn't cause trouble. I gave him to Bryce while I cleaned up our stuff, and I forgot to mention "Don't let go of him." (Bryce doesn't have as much practice with him in public as I do). Scout got away from Bryce and ran  for the long-jump pit as fast as he could go (which is much faster than Bryce or I can go). He jumped in the pit right as a girl jumped. She barely missed knocking him over. Scout, loving risk, thought that was pretty funny. As I headed to get him, I heard a woman say, "Stupid kid!" I turned and glared at her and saw her complaining to someone about the dumb kid getting in the way. After grabbing Scout, trying with all my strength to not tell the woman exactly what I thought of her, I said, "It's people like you that make our lives much more difficult!" As I kept walking toward the car, I thought of all the things I wanted to say to her, my body shaking with anger, tears coming to my eyes.
  After I calmed down, I realized that I made a mistake. I should have taken that opportunity to educate her. If a child with Down's Syndrome had done what Scout did, I'm sure she wouldn't have called him a "stupid kid." I should have said, "I know you can't tell by looking at him, but he doesn't think the way other kids do. Let me tell you what he's been through in his 5 short years on earth. He is autistic, which means that he  doesn't understand consequences and risks, among many other things. He has had 2 tumors taken out of his brain. He has a handful of seizures, sometimes more, a day. He has pain in his head from the scar tissue that grew from having the tumors out. So, maybe next time you open your mouth to call someone a "stupid kid", you should think first, and realize that even if you don't see the handicap, it's still there." 
  I know this won't be the last time there are those kind of people in our lives. It won't be the last time that people see Scout for his noise, his intrusion of space, his tornado-like energy. But I wish they could see all the fighting he's done, all the fighting he does daily. I wish they could see the magical smile that lights up everywhere he goes. I wish they could see how he's willing to try anything (even things he probably shouldn't!). I wish they knew how he will work on something he wants to learn to do for hours or days until he figures it out. I wish they could see his heart, that is bigger than anyone else's. I wish they could see he is doing the best he can.
 I wish they could see that he is an angel walking this earth. 
Even though there are days, and there are those people who make the days more painful, I thank God every day that I have Tiny Toli in my life. His smile makes it all worthwhile!
  

Bring it on!

 I wanted to start a record of our lives dealing with autism. Mostly, I think I need to vent, but I also want family and friends to know what we are going through. A lot of suffering in life is done in private, but I know a lot of our struggles are seen, even if they are misunderstood. I want to help the people in Scout's life understand more what he is going through, what he is fighting to overcome every day, and what he needs from everyone in his life to fight the best fight he can.
 After hearing the official diagnosis of autism a couple of months ago, I was in more shock than I thought I would be. We had been pretty sure for a while that this was what made our little guy so different, but hearing it from the psychologist was still quite a blow, like the air being knocked out of you. What did that mean for him? What did that mean for his future? Would he ever have a "normal" life? The questions didn't stop there. Most often, I have found myself asking the ever-popular "Why?" It breaks my heart to see him suffering, to know that there is so much inside that he can't communicate to us. He can't tell me when he's sad, what makes him so angry, that he loves me. I long for the connection between most moms and their kids. I want so badly to be able to fix him, to take away all his struggles. Every mom wishes for this. 
 I have been asking the question "Why?" for much of Toli's life. When I watched him seize for an hour and a half when he was only 10 months old. Crying at the swollen and bruised head of my little boy after brain surgery. Watching him seize many times a day. Trying to help him when he is so angry but can't say why, when he is just so frustrated at his limitations. This question has been on my mind a lot, and I have been angry. I have been angry at God for allowing, or causing, my innocent boy to suffer. What did Scout ever do to deserve such punishment? Why would God allow a child to hurt so? I have been so angry with God that I even told Him I wasn't going to talk to Him anymore. It seemed my endless prayers to ease Scout's pain were in vain anyway. I screamed at God in my head, blamed him for everything that Scout was going through. I didn't expect lightning to strike me down for the anger I hurled at God, because I had started to think he didn't care at all, didn't hear me at all. 
 A couple of weeks ago, I was in the mountains on a beautiful day. I looked up at the blue sky, looked at the sun shining on the trees and making the snow look like a million crystals. The thought came to me, "Thank you God for this beauty." I immediately censored myself and said, "No, I'm mad at you! You let my baby suffer!" Then, as cliche as it sounds, it seemed as if the heavens opened. I saw a scene: The Pre-existence. God was telling us about Earth, the reason for going, what would happen there. We were all so eager to go. We knew the reward was greater than the pain we would suffer there. Then I saw this spirit-  a beautiful young man, shining blue eyes, a smile that rivaled the Sun. He stepped up and said, "God, give me the hard stuff. I can do it!" My Toli, so strong, so sure of his strength and ready for a challenge, told God, "Bring it on!" I understood that Scout had chosen to come here and had chosen the challenges that this life would bring. We have been told that since we were children, but it became a truth for me in that moment. He chose. He isn't being punished or neglected by God. None of us are. We chose. Knowing Scout's personality, he was so excited for the challenge of this life. I know that in that moment, when he chose, I stepped up by his side and said, "I've got your back." I told him I would help him through it, try to guide him, but most importantly, love him with all of my soul. 
 We gave Scout his middle name, Anatoli, after a famous mountaineer. He has in him the necessary endurance to climb this mountain called life. He was so excited to start his journey, having no doubt he would reach the summit. I promised him I would help him up the mountain, by helping him carry his burdens. I need to be stronger to do that. I am trying every day to be stronger, to be more patient, to see him for the strong spirit he is. We may have forgotten the day we chose to come here, and why we were so willing, with so much anticipation, to come and take what life has to give. But as I saw that scene so clearly of Scout saying "Give me the hard stuff," I knew that he still has all of that resolve in him now. He still has all the ambition, fortitude, confidence, and ability that he had when he made the choice. I must still have all that I had when I promised him I would be by his side. I hope I can remember that. I hope I have the ability to find those things in me when I need them. 
 I know it isn't God's fault. I can't blame him for a choice that Scout made. Now, when I look into those magnificent blue eyes, I no longer feel pity. 
                           I am in awe...