Neverland

At the end of October, Jesse and I took Kampbell into to The Children’s Center in Salt Lake City to have his “autism” diagnosis re-evaluated. It turns out Kamp is much lower on the autism spectrum than we thought.  Of course, Jesse and I had our suspicions, which is why we took the time (and spent the money) to have him re-evaluated.

I was surprised at how bad it hurt. It felt – and still feels – like  someone’s stabbed me in the heart. I titled this post Neverland because I guess that’s how I see my Kamp; he is my “lost boy” who will never grow up. Jesse and I now have to face the reality that Kamp will never be able to be on his own.

It is all a little overwhelming, and honestly a little depressing. I’m not perfect; and I’m not going to pretend that I haven’t locked myself in the bathroom with all the lights off and balled my eyes out. I have. Several times.  For some reason, it just feels good. And it’s much more dramatic to cry in the dark.

But, in the spirit of being thankful, I can honestly say that I’m thankful that my Kamp doesn’t have to deal with the complexities involved in growing up. He won’t have the burden of fitting in, or getting the right grades; getting into the right college, paying bills or dealing with relationships. Everything gets to stay very simple and innocent for him. He is my Peter Pan who can stay in childhood bliss through every breath he takes on this earth.

Isn’t that what we all secretly hope for? To live in a world where your biggest worry is whether or not Mom remembered to buy ranch dressing.

Don’t worry, I did.

In the Broadway musical, “Peter Pan”, Peter and the Lost Boys sing a song entitled, “I Won’t Grow Up.”  They sing, “If growing up means it would be beneath my dignity to climb a tree, I’ll never grow up, never grow up, never grow up, not me!” That describes my Kamp perfectly.

So this Thanksgiving, have fun in the real world. Jesse, Hadley, Max and I will be in Neverland with Kamp!

Gitty Up!

Kampbell began therapy with horses over the summer at Schows Ranchette in Pleasant Grove, Utah.

On our first visit, Kamp became VERY upset. I’m pretty sure it was because it was a new place, he was nervous and the smell was – to put it kindly – overwhelming. I tried to stay positive and tell myself that it was going to be a great thing and he was going to love it. We met Patricia, the owner, who introduced us to Allison, Kamp’s teacher. We were taken to the horse Kamp would be riding (Sadie) and the room where they kept the helmets. We were told to, “Pick one!”

This is where I really started to worry.

Kamp has NEVER liked wearing anything on his head. Put so much as a hand on his head and he freaks out! Patricia could sense my hesitance and handed me a helmet. It was camouflage – what little boy doesn’t like camouflage? I remember I took it and told him, “Kamp, the helmet is part of the deal. If you wanna ride the horse you have to wear the helmet.”  I’m know he didn’t understand anything I said. The screaming told me that. I wrestled to get the helmet on – he screamed.

I got the clasp clicked and he tried as hard as he could to get it off. Patricia came up behind him, picked him up, and put him bare back on Sadie and told Allison to, “Start walking.” Kamp cried, fussed with the helmet and I thought, “Ok, this is going to be bad.” I waited for him to start head butting the horse and figured the lesson would end just as fast as it started.

Then something incredible happened, he stopped crying, stopped fussing with the helmet, and SMILED. They practiced stopping the horse and made Kamp say, “Walk.” to get Sadie to go again.  He followed their commands and kept laying down to give Sadie hugs. He’d forgotten all about the helmet. It was a miracle! Thirty minutes of calm. I was cautiously optimistic because I knew that Kamp could do well one minute and fall apart the next. Who knew what the next lesson would hold.

Fast-Forward

We’ve been taking lessons since June and it amazes me every time. He no longer cares about the helmet and is always excited to see Sadie. They have developed a sweet relationship. He loves to explore her face and the amazing part, she lets him. Once he was messing with her nose and I think she got a little annoyed because she snorted right in his face. It was hilarious. He loves to pull her by the lead rope and walk around the arena. Only sometimes he doesn’t walk fast enough and Sadie puts her head down and pushes him forward; it’s her way of saying, “Gitty Up!” Amazing!

Horse therapy has been so wonderful for Kamp. He isn’t miraculously speaking or making huge strides against his disability, but for thirty minutes a week he has a place he can go and find real peace and happiness. For a little boy who works so hard to fit into a world he doesn’t understand, I know the time he spends with Sadie is very special to him.

Hey Big Haircut!

My friend, Melissa McMillan, is also my super-amazing hairdresser. She can do anything and makes you look – and feel – awesome. My daughter has great looking hair because of her. She has a great eye and helps you figure out what will look the best on you.

So how come I don’t take Kamp to her?

Answer: I love Melissa too much to subject her to the mayham that results from trying to give Kamp a haircut.  It’s loud and can get violent (there’s a lot of hitting)! But, instead of just talking about it, this week we took some video. It’s only about a minute of what turned out to be a 10-minute ordeal, and says more than I ever could put into words.

Please enjoy and feel free to chuckle and give thanks that this isn’t you!

Meet Kamp Black

At church a couple of weeks ago I gave a little sharing time to the primary kids (those are kids that are all about Kamp’s age). I decided that I wanted to do it because I noticed them saying things like, “He’s weird.” or “Why does he yell like that?” And since the autism kindergarten class is at the school they all attend – or will attend – I wanted to tell them a little bit about Kamp.

I’m posting it because I thought that maybe it would be helpful to anyone who wants to explain to their kids about kids who are a little different, and how important it is to treat them kindly. So here you go!

My name is Kamp. I’m five-years-old; I have  autism. What’s that? Well, autism is a disorder that affects how my brain works. I may be different but I have a lot of great qualities. I am funny; I love Disney movies and riding horses, and of course playing in the dirt. You may not know how to treat me so here are some things I want you to know:

Say, “Hi!” I want to be included just like you. I may be different but I’m a person too. It feels good when people say hi to me, wave, or notice I’m here. I may not wave back but please don’t ignore autistic kids just because they are different.

Talk to me. I may not be able to talk back to you but everyone talks in different ways. Some talk a lot and some don’t talk very much or not at all.

Taking turns. Sometimes I get stuck on what I am doing. I don’t always like to share. I’m still learning; please be patient with me.

Different is okay. How do you spot someone who is autistic? Sometimes you can’t. We usually look like everyone else, but if you spend enough time with me you’ll notice I flap my arms, I yell and jabber, and sometimes it’s really hard for me to sit still.

Five Senses. What are the five senses? Sight, Sound, Smell, Taste and Touch.  Some of my senses are really sensitive and I can get a bit overwhelmed. I can see the flicker from flourescent lights that most people don’t notice until the light is about to burn out. I can also hear the constant hum, which can be really irritating. I don’t love loud music and too many colors hurt my eyes. I also don’t like very many foods; texture is really important to me. One cool thing about me is I have a really high pain tolerence, so it takes a whole lot to hurt me. I’m pretty tough!

Be a good friend. Please don’t feel sorry for me. I have autism, and I’m ok with who I am. Sometimes I get lonely and wish I knew how to be included, but I don’t. I am a child of our Heavenly Father, too. I can’t help it that I have this body, so please remember that I’m important just like you.

At the end of the presentation, we all sang “I’ll Walk with You“ from the Children’s Song Book.

School days are here again!

School is back in session people! Kamp is officially a kindergartner; he is in a “small group” kinder class for kids with autism. The house is SO quiet and peaceful (sigh, smile); it does the heart good.

As selfish as it sounds –  to want Kamp in school all day – I do worry about him a lot;  he is officially in the public school system.  I think, as parents, when we send our kids off to school we hope they will fit in, be liked and avoid the heartache of not being accepted. It’s a little different sending your kid to school knowing full well he won’t fit in.

As cute as Kamp is – and he is stinkin’ cute – he does weird things. He yells and screams (for no apparent reason), flaps his hands, spins in circles, and frequently tries to hide under his chair. Kids can be cruel and I’m not naive to think that there aren’t kids who wouldn’t be mean to him.

Personal Experience

When I first moved to St. George in the fourth grade I was bullied by a group of boys. How about this, I’ll give you their names:  John Ence, Riley Malan and Wayne Hill (Jerks!). They were awful to me and I never really knew why. It was horrible.

So you can imagine my fear sending Kamp to school when he already acts a little “Napoleon Dynamite-ish.” I’m sure there are “John Ence’s” and “Riley Malan’s” locked, loaded and looking for someone to torture.

My nephew Tyler Valdez is one of those high school kids you expect to be a jerk. He’s handsome, athletic, and popular. But he happens to be one the nicest kids in the world. Not only is he nice, he is kind too. He decided last year to friend an autistic kid in one of his classes. He made a point of talking to him every day and looked after him to make sure that others were treating him nice.

I hope and pray that Kamp will find a “Tyler” to be his friend. Someone who will be willing to take him under their wing and make sure that everyone else treats him kindly too.

On the other hand, there’s always the possibility that Kamp’s a little more prepared than I give him credit for; he has given me some pretty wicked bruises this summer.

Sensory? Yes please!

Have you ever met a kid who could hurt themselves pretty bad and then act like nothing’s wrong? Well, meet Kamp. He has an amazing pain tolerence! But at the same time, if you take him into Express (the department store) – where they have bright colors and loud music – he will run out screaming bloody murder with his hands over his ears.

Why?

Kamp has sensory issues, lots of kids with autism do. Even people without autism suffer from sensory problems. My oldest brother experiences REAL pain whenever he hears aluminum foil being crumpled or the touch of styrofoam. I used to think that Kamp’s pain tolerence was pretty great until we were getting ready for church one Sunday morning. Kamp went into the bathroom and climbed up on the counter while my hair straightener was plugged-in to heat up. I heard him yell and ran in as he was trying to get down. I helped him down, gave him a bit of comfort, and in no time whatever was bothering him had passed. He ran out of the room and began running around acting silly. It wasn’t until we got to church and he was standing up on our bench – in his little church shorts – that we noticed he had a 2nd degree burn on his leg. It made me physically ill that he could have something on his body like that and I would have no idea. As I have learned more about sensory, I have read about children who’ve had broken bones and their parents had no idea – for DAYS sometimes.  Kamp’s high pain tolerence sounds pretty cool, but to be honest, it just scares me to death.

On the other end, where he has a high tolerance for pain, he is VERY sensitive to light and sound. At church there are florecent lights everywhere and Kamp is constantly trying to turn off the lights, which really helps the kids stay reverent. He does this because he can see the constant flicker of the lights. Often, flickers that “normal” people don’t notice until the bulb is about to go out. We also suspect he can hear the slight hum, again, something most of us don’t hear. He hates when the organ at church is turned on and can’t stand stores that have bright colors. He trys to leave, or just screams until we take him out. When he is bombarded by these things, he goes into sensory overload and – more often than not – it usually ends up in a melt down. He feels REAL physical pain; something I’m just beginning to understand; it must be horrible to have to fight these things every day of his life.

How can we help him?

Through this journey we have learned a lot about this issue and how the brain and nervous system work together. For example, imagine you’re standing in a dark room. Without touching any part of your body, identify where your arms are in relation to your head and where you’re legs are in relation to your torso. You know where your different body parts are in reference to where your head is in space, because your nervous system tells your brain. It’s called proprioception. Kamp’s brain doesn’t always tell him where his body is in space. However, by applying pressure to certain points on his body, it helps force his nervous system to tell his brain so he can feel “normal” again. When he has a major melt down I have to resort to laying on top of him in an effort to apply enough pressure to his body. I usually sing his favorite song to help him focus and come back from where ever he goes in his head.

When some kids start to feel off, a lot of times they’ll figure out ways of getting stimulation on their own; sometimes you’ll notice they’ll spin in a circle or flap their arms. And sometimes – little  boys – have a “natural way” off achieving the sensation they are searching for. And boy has Kamp discovered the “natural way.”

In the beginning he used to use trees, poles,  table legs, etc. Whatever it was, he would sit down, wrap his legs around it and squeeze! Then, he  discovered  human arms worked just as well. And lucky for him, everyone has at least one. It’s incredibly embarrassing. It’s like I’m taking my untrained dog with me wherever I go.

The best story, though, has to be when Kamp “mounted” our good friend (we’ll call him Chris). Poor Chris – who isn’t exactly the hugging type – looked so uncomfortable trying to stop him. But not knowing what to do, he looked to us for a little help but we were too busy laughing.  Kamp eventually stopped and we joked that Chris would never have us over again.

We are trying really hard to stop THAT kind of “stimulation.” It’s not helpful and obviously VERY socially inappropriate. If you do ever invite us over, you’d better keep a rolled up newspaper nearby (just in case).

And that my friends, is why he has earned the nickname “Puppy!”

You say it’s your birthday? It’s Kamp’s birthday too, yeah!

This Sunday my “Kampy” turns five. I can’t believe he’s already five and starting kindergarten. My, how time flies! I have been thinking about this birthday for awhile. Wrapping my head around the fact that I have a little guy who is about to start school and STILL doesn’t speak is difficult.

When you have a baby you can’t help but imagine what their future holds and all the things you want for them. It seems like every time Kamp’s birthday comes around I start thinking about how the older he gets, and the further behind he falls, the less likely those dreams will ever happen for him; sometimes it’s hard letting go.

There are days – bad days – when I find myself sitting alone imagining what our life would be like if Kampbell didn’t have autism. What if he could talk to me and tell me all the things that are on his mind? The tears inevitably start flowing and I find myself mourning once again – for all the dreams I had for him when we first met.

We usually do a “friend” party when our kids turn five. We started discussing Kamp’s b-day and thought, “Who should we invite?” He doesn’t really have any friends, and as much as I would like to think he doesn’t care, I’m not sure that’s true. I have watched him try – in his own way – to interact with other children and FAIL miserably. After a failed attempt, he retreats and goes back into his own little world. I desperately want him to tell me how that makes him feel, but he can’t – and my heart breaks for him.

As I sit imagining him without autism – if I were being completely honest with myself – I’d have to  imagine a COMPLETELY different person. A big part of what makes Kamp, Kamp is his autism. The way he thinks and views the world – I love it!  It’s honest and clear. He can see things without the blinders that many of us put on and accept.

I realize that all this is a process and the mourning comes a little at a time and continues as he gets older. I love him more fiercely than I could’ve ever thought possible. He may not have kids his age that he can call a friend but he will ALWAYS have a friend in Jesse, Hadley, Max and me.

To quote Kamp’s favorite song, ” Some other folks might be a little bit smarter than I am, bigger and stronger, too. But none of them will EVER love you the way I do. IT’S ME AND YOU BOY!! And as the years go by, our friendship will never die. You’re gonna see it’s our destiny. You gotta friend in me.”

So, Happy Birthday Puppy!!! We love you with all our hearts!

I wanna Rock n’ Roll all night!

Journal entry, July 25, 2011: “It’s 3:15 a.m., I’m on my third day with no sleep and Kamp isn’t showing any signs of slowing down. It seems like the longer he goes without sleep the more energy he has, and the more manic he becomes. He is currently standing on the back of our couch and jumping to the floor yelling  jibberish at the top of his lungs. The only visible signs of sleep depervation are the deep set circles under his eyes. They are so purple; it looks like someone punched him in the face…then again, maybe he’s a vampire. And with the endless nights, I’m starting to wonder if he is, in fact, a vampire.”

In my “Groundhog Day” post, I talked about  Kamp’s regression and how he slips back into old habits. Well, we are once again enduring the, no-way-am-I-sleeping stage. Truth be told, of all the things he does, it’s probably the hardest to endure. Its exhausting, and its not as if I can sleep during the day. Jesse has to work and I have two more kids to take care of. I wish it was as simple as putting him back in bed, or spraying the closet with “monster spray,” turning on a movie, or just locking him in his room. 

Kamp doesn’t wake up like a normal human being (yawn and stretch), he’s CRAZY and AWAKE. When he gets up it’s like he’s taken a crazy pill. He is hyper, manic, and won’t sit still. He jumps, and yells, and jabbers to himself, over and over and over again! Turning on the TV doesn’t help because of the language barrier; I’m not sure if he’s had a bad dream, which means I’m unable to take care of the “monster.” Jesse and I are terrified of locking him in his room because he gets violent when he’s upset, and we’re worried he’s going to seriously hurt himself.  So, what do we do? We give him melatonin (Melatonin is the natural chemical in your brain that tells you, you’re sleepy; it’s a  non-addicting  herbal medication.) to help him wind down and go to sleep; but it doesn’t make him stay asleep; and when he gets into his crazy moods, he’ll wake up even with the melatonin. It’s no wonder he and I have had a few, “Come to Jesus” moments on crazy sleepless nights.

It’s maddening to watch your beautiful baby deteriorate right before your eyes, while you’re helpless to help him. It feels like I’m watching him slowly slip further and further away from me, and there is nothing I can do. It’s heart breaking . My sanity may sometimes waiver but I do have a great support system in my brothers and sisters. Jesse and I can still find humor and joy in it all. And who knows, maybe he really is a vampire. I think I’ll start wearing a lot of silver. You know, just in case.

I see autistic people (She says in a whisper.)

The other day Jesse and I were at Deseret Industries (D.I.) looking for a bike wheel when an employee walked up to us and said, “I just read.” (Blank stare; awkward silence.) Jesse and I weren’t sure who he was talking to; he was looking at the floor. He went on, “I read somewhere that record companies are going to start making records on vinyl. I am so excited about it.” He launched into a rant that didn’t need our input. He went on about the different music listening options; vinyl was clearly his favorite. Because of our home life, Jesse and I quickly realized that this guy must live somewhere on the autism spectrum and we let him go on and on about his favorite subject, which was his way of trying to relate to us. We loved it!!!

I get asked this question all the time, “Do you see autism in other kids?” It’s not as if I’m the unnamed murderer in Poe’s, “The Tell-Tale Heart.” Just because I have an autistic kid doesn’t mean I hear the “thump, thump” everywhere I go; I don’t see autism all the time.  But that isn’t to say that I don’t see kids with obvious symptoms. It’s difficult when I see symptoms in a kid and their parents are TOTALLY clueless. It makes me sad because they (the kids) aren’t getting the help they so desperately need, and there’s a sense of frustration – even dislike – for these kids because others have the wrong idea about what’s going on. It’s hard because they’re incredibly smart and the signals get lost. Like noticing that your child is completely socially handicapped, or has no idea what a “friend” is, or  they have no idea how to cope when things don’t happen the way they should, or taking things VERY literally and not grasping the underlying meanings in things people say.

There have been a couple of times when this has happened (thump, thump).  And when it did, I wasn’t exactly sure what to do. Do I say something and risk having them completely hate me forever, or do I keep my mouth shut and hope they figure it out? I’m not a professional psycologist – yet – so I worry that people will just think that I’m, “The Tell-Tale Autism Lady.”

When Kamp was diagnosed with autism my neighbor across the street, who has an adorable daughter with aspergers, said, “I thought he did.” I said, “Why didn’t you tell me!?” Now that I’m on the other side, I get it.  Even though I try to live by the motto, “It’s better to know”, because you can’t do anything if you don’t know what the problem is; looking back, I’m not sure I would have listened. So, this week let me throw this question out there: If someone noticed those signals in your child would you REALLY want to know?

Groundhog Day

I chuckle when people tell me, “Oh, this phase will pass.” Or, “They’ll be grown before you know it.” I just smile and say, “Yeah.” But inside I think, “YOU HAVE NO IDEA WHAT YOU’RE TALKING ABOUT!” I have an older child; I know Hadley eventually grew out of the “biting” stage and the “pulling everything out of the bookshelf”stage. She was even eventually potty trained; she grew up, learned and moved on to the next thing. It’s a completely different ballgame for Kamp.

In the course of the day, I tell Kamp – literally one hundred times – to stop opening and slamming our entertainment center doors. At night I go to bed knowing I am going to tell him one hundred more times the next day and the next and on into the unknown future. I haven’t been dealing with this repetitive behavior for a month, or a few months; I have been dealing with this for years! He may stop for a short time, but then something triggers the behavior and he’s right back in the “stage” again. Sometimes I’m aware of the trigger, like a change in routine or not feeling well, but other times I have no idea what sets him back; I’m not sure if these behaviors will ever end. I say to myself, he’s going to be 16 and I’m still going to be saying, “Kamp NO slamming doors!”

Sometimes I feel like I’m stuck in the movie Groundhog Day. Everyday I deal with behaviors that NEVER seem to disappear like: slamming doors, refusing to use utensils, sneaking out of the house, pushing the screens out of the windows, jumping off the top the bed, sucking on shirts, crawling, head butting, slamming toys against the wall to make holes, pulling blinds, taking EVERYTHING apart. Oh, and potty training (but that is a whole different post). So you can understand when I’m dealing with these things everyday and people tell me over and over, “He’ll grow out of it.” It can be maddening; sometimes I feel like I’m going a little crazy.

Remember in Groundhog Day when Bill Murray runs into his old high school classmate, Ned Ryerson?  Ned says, “Watch that puddle, that first step is a doozy!” Bill Murray’s character eventually punches him in the face. My Groundhog day usually ends with Kamp punching me in the face; lets just say it can be irritating.

I love my little boy so much. Tonight, I know I am going to lay my head on my pillow, go to sleep, wake up at the same time tomorrow and do it all over again. The crazy thing is,  I wouldn’t have it any other way.