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
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!
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
