Because of Kampbell’s diagnosis we knew that having a boy, Max would be at a higher risk of developing autism. When Max was a brand-new baby, I found out about a study through the University of Washington in Seattle for high-risk infants that was being sponsored by Autism Speaks. I called the number to find out more information and was lucky enough to get Max on the list.
The Study required me and Jesse to bring Max to Seattle at 6 months, 1-year, 2-years, and 3-years for an MRI and a thorough behavior assessment. The goal is to study the white gamma in the brains of the high-risk infants and watch for changes as they develop. The researchers are also interested in seeing what happens to the brain if indeed, children do develop autism.
At the end of August we went to Seattle. We were nervous. Max had started doing strange, repetitive behaviors; his social skills had started to regress, and his receptive and expressive language had fallen way behind. We were, however hoping the team of psychologists would convince us we were just paranoid parents and Max was perfectly normal.
We hoped. That’s not what they said.
We were told that Max was behind and the team wanted to review all of his tapes from previous assessments. I got a phone call about a week after we returned home and they told me the team was, in fact, diagnosing Max, and putting him on the autism spectrum.
I sat on the phone with the amazing psychologist and balled my eyes out. I kept saying over and over, “This can’t be happening.”
For the next week or so, I cut everybody out. I hid inside myself and tried to figure a way out of this. I didn’t, and still don’t want to watch another precious baby slip away.
Someone got the paper work wrong in heaven! Or, maybe God doesn’t know me at all.
Jesse and I are still grieving; trying to come to terms with what it’s going to mean, having two boys on the spectrum. Some days are good. I look at Max and feel optimistic. Other days, I go back to being angry; trying to understand why the universe hates me so much.
The truth is, Max has already made a lot more connections than Kamp ever did at this age. We’re hoping he will be high-functioning, and live a much more independent life. It means a lot of hard work for me and Jesse right now, and hopefully the pay-offs will come sooner than later.
I’m determined to get Max through this so that he can blend in – socially. We’re Kamping with Autism, people! Now it’s just Kamping with Autism: To the Max!
People want to be kind and compassionate; I truly believe that. However, actually putting kindness and compassion into action is a lot harder than just thinking about it. The truth is, when you have a child like Kamp, there are times when you’re simply not welcome, and treated like an outsider.
We don’t take Kamp to the movies because he screams and can be very loud. We avoid busy parks because he’ll see something he wants (toys or food) and walk up to complete strangers and take it. We avoid the store – even people’s homes. Not because someone has said we’re not welcome, but unlike Kamp, Jesse and I can pick up on social cues and know certain people – although they would never say – just don’t want him around.
It’s really an uncomfortable feeling when you know your kid’s not welcome somewhere. And although Jesse and I remind each other that we don’t care – it’s hard to not take it personal.
Here is the latest on the list of places Kamp is no longer welcome:
Anyone who knows me, knows I love to work out. It is the ONE thing I do every day that’s just for me. For an hour and a half I get to put on my headphones, rock out to my favorite tunes and make my body feel better physically – especially when I’m so often drained emotionally.
From the beginning, I have always tried to avoid taking Kamp to the gym daycare. I know he’s difficult, so when I don’t have to take him, I don’t have to worry about him. During the summer however, I didn’t have much of a choice.
I took precautions. I took him at night when it wasn’t as busy, and I explained to the employees about his specific disabilities. (i.e. what his triggers are, and how to deal with them). And I figured it was only for an hour and a half – should’t be a big deal right? WRONG!
Halfway into the summer, I received a phone call from the supervisor at the daycare. She told me the ladies who worked during the times I brought Kamp did not want to deal with his disability. She said, “they’re not trained to deal with kids like Kamp.”
I don’t have to tell you that I was VERY emotional about it! The gym was suppose to be my safety net. It was what I had been relying on to keep my sanity! I “hurried” off the phone (I hung up on her) and burst into tears.
I called her back later and did my best to keep my wits about me while I explained a little thing called the Americans With Disabilities Act, and how they couldn’t refuse my son because of his disability. She back peddled a bit and said to, “…just bring him when I am here.” But at that point, I knew my Kampy wasn’t welcome, and what kind of mother would I be if I took my special boy back for people to treat him poorly because they wanted their job to be easy.
I haven’t taken Kamp back, and now that he is back in school, I’ve returned to the daycare with Max and have had no issues. However, I do feel weird. I hate knowing that someone rejected my child. It’s hard not to feel like a pariah. It puts a sick feeling in my stomach; I feel rejected, too.
Sometimes we (as a family) feel like we are outsiders; tolerated but not really welcome. It’s lonely and frustrating. In some of my weakest moments I have wished that things were different, but I love Kamp and everything that comes with it. So, I put on my big-girl pants and remember that my little family is the most important thing in my life, and if your not with us then it’s your loss! But, if you are with us then you are in for some crazy-awesome, mind-blowing adventures. And I never said there wouldn’t be poop involved
I have never been to California. I know it sounds crazy. I grew up 12 short hours from the Pacific Coast – but alas – I’ve never been. So when Jesse came home and said that he had to go to San Diego for work, and that maybe it would be a fun idea to drive the family down for a little weekend getaway to see some awesome friends, I was SUPER excited.
Anyone who has a child with autism knows that taking them away from their routine can be a challenge. Kamp is low functioning so it becomes more difficult to prepare him for change, especially when there is a major communication barrier. (He can’t talk and he doesn’t understand most simple, and all complex reasoning). So what do we do?
A few Sundays before we were supposed to leave for San Diego, my sister Erin called us up and told us that, after talking to my brothers and sisters who live in the area, that they would like to offer their babysitting services, so Jesse and I could take Hadley and Max on a little vacation, and maybe have some “normal” experiences.
I have been told that it’s very important for my other children to have normal experiences that aren’t often afforded them when they have a brother like Kamp. Sometimes our lives get so wrapped up in Kamp that my other two children are put on the back burner.
We accepted Erin’s offer and wouldn’t you know it, the guilt immediately set in! How in the world were we suppose to go on a “family vacation” and leave a very important member of the family behind? I had heard about others and read plenty of experiences that have helped parents of children with disabilities come to a comfortable place and have allowed them to make this same decision I had to make.
When it comes down to it, I know that I’m a reasonable person, I know Kamp would have been completely miserable at Sea World. My sweet friend’s yard – although large and amazing – was in fact a mountain and would have been a disaster waiting to happen. For us to enjoy ourselves, and for Kamp to stay comfortable, we realized that leaving him home was the best decision we could have made.
As it happens, we went to San Diego and had an amazing, relaxing, an “autism-free” time. And when we left to come home, I couldn’t wait to see his face! I am thankful that my other two babies got to have something normal for a change, and to be able to see their parents in all our fun, relaxed glory. Something they don’t get to see too often.
I’m never going to be completely guilt-free when we have to leave Kamp behind. I had so much fun in San Diego, but I was very aware that a special person was missing. I’m too passionate of a person to not feel guilt whenever we leave him. I say that’s ok because as with anything you can learn to separate the two. I can put that guilt away for the sake of my other children – who deserve to have all of their Mom’s attention. And it doesn’t hurt that it makes the reunion so sweet.
A big shout out to my brothers and sisters, and their kids for taking some of their time to take care of Kamp. Love you all!!
Growing up, summer was always a really magical time of year. Some of my favorite memories are sleeping outside on the deck with my brothers and sisters, playing night games and going swimming. Endless swimming.
When I was young I spent June through August in a swim suit, and that’s what I want for my kids; the fun and adventure that only a hot, hot summer can offer.
Other than loving to wear shorts (or a speedo), Kampbell doesn’t do well during the summer months. He relies so much on structure that any break in routine (i.e. no school) sends him into a downward spiral of regression. Our house is very structured with routine, but I cannot replicate school. I don’t have seven aids to be with him all the time and a classroom full of other kids – also being forced to be social. I keep a strict routine as best I can while trying to meet the needs of my two other kids.
The older Kampbell is getting, the less we are able to “just take him along.” Jesse and I love camping and would love to take our kids, but Kamp doesn’t do well outside the comfort of his own bed. So, we just don’t go.
This summer more than ever has become less about adventures and more about picking and choosing what we deem really “worth it.” Jesse and I ask ourselves, “Is this trip worth all the effort?” If the answer isn’t a resounding yes, then we’ve decided we aren’t going to put forth the effort.
The closer summer gets, the more anxiety I have. Kamp has come so far this year and I’m worried about the break. He struggled after Christmas and it was hard to watch him fall apart again.
I am becoming more conflicted as summer approaches. I want to experience the fun and adventure of a summer with my children, but I have one who can’t always deal with the stress an adventure is sure to bring.
This blog began last year as a way to survive the summer with Kamp, and here we are facing another one. I figure, let’s get this party started; with tears and laughter, ups and downs, maybe even some sweet summer hits to rock out to. It’s first grade or bust baby!!!!
Ok I have been out of the blogging game for a bit – but I’m back baby!
1) When you meet someone who has autism , PLEASE don’t immediately ask, “What’s your child’s special ability?” The truth is that not all children with autism are savants. And when you ask a mother (or father) that question, and at that moment their child’s special ability is head butting you with precision, it can make parents feel pretty uncomfortable.
2) Knowing one or two kids with autism means you know one or two kids with autism. It in no way makes you an expert. Kids with autism share a lot of the same symptoms, but autism is a HUGE spectrum. While some kids eventually talk, some don’t. Some grow out of being aggressive, and some don’t. When you say things like, “I know a couple kids with autism and they grew out of it. Yours will too.” you’re being insensitive, and I’m sorry but a little ignorant.
3) Just so everyone knows where Jesse and I stand, we know who Jenny McCarthy is and we don’t agree with what she says, and I personally have some issues with her. I respect any parent who has a child with autism and decides to do the cleansing of metals and hyper-baric chambers because I know they are doing what works best for their loved one. Jesse and I have decided that those procedures aren’t right for Kamp. We have heard and read all about the gluten – kasin free diets and have seen miracles take place in some kids, but for others (including Kamp) it has not. Meaning, there is no set plan to treat autism. Some things work for some kids and some don’t. That’s the frustrating thing for parents of children with autism, we have to wade through everything and figure out what works best for our kids.
I guess I have decided (after way too many awkward situations this last week) that I need to be a little more direct with people. I keep worrying so much about hurting other people’s feelings that I have allowed other people to say hurtful things to me. I hope this is educational, and who knows, maybe it’s going one too many days without sleep. Or the constant screaming. Or getting hit over and over again. Maybe it’s all those things talking. Yeah, I’m gonna go with that.
Phew, I did it. I can get off that horribly uncomfortable soap box. And as much as I would rather have avoided this conversation, it’s all part of my journey with Kamp. Jesse and I are his advocates.If we don’t stick up for him who will?
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!
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.
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.
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!
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.
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.
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.
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!”
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!
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 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.
Kamp lives in a world he doesn’t understand, and that makes him nervous and very, VERY uncomfortable. He copes by sticking to a routine; it helps him feel safe knowing what’s coming next. And because Kamp doesn’t understand language very well, warning and preparing him for changes in his routine is out of the question. When the routine is broken he hits, screams, cries and kicks; freakouts can last anywhere from a few minutes to hours.
Changes can be miniscule, like not zipping up his coat (all the way), taking a different way to the gym that he doesn’t recognize, or putting on his shoes and not going outside right way. In fact, when Jesse was working at Macaroni Grill we’d stop by to visit. If we didn’t park the car, go inside, sit down and order his Mac ’n Cheese he would lose it. You think YOUR kid won’t stop screaming? I’ve got one that’s about to start kindergarten, who is pereptually stuck in the terrible two’s. The terrible two’s on steroids!
At meal times Kamp has a staple that I think most people who were raised in Utah can relate to - Ranch Dressing. The kid dips EVERYTHING in it! Pizza, chicken nuggets, sandwiches, hands, toy dinosaur, you name it, he’ll use it to eat his beloved ranch. So a couple of weeks ago – I’m not sure where my brain was - I forgot to pick up ranch and…we ran out. It was dinner time, Kamp sat down to eat his favorite (pizza) and saw that there was no white dipping sauce on his plate. He walked over to the fridge, looked right in the spot his favorite condiment calls home and of course, it was empty. He started combing the fridge then walked over to me grabbed my hand and led me over to the fridge, opened it and moved my hand toward the empty space. I tried to explain, “I’m sorry Kamp, but we ran out of ranch. Daddy will pick some up on the way home.”
I am positive he didn’t understand a word I said, but he did understand when I closed the door empty handed that we didn’t have the salad dressing. He started jumping up and down and screaming like an ape. He started running into me and proceeded to head butt my leg and slap me over and over. I usually try to ignore him at first to see if he will calm himself down. Sometimes he does; this time…not so much. I turned around and wrestled him to the ground. I had to lay on top of him to apply enough pressure so that his nervous system would tell his brain to RELAX. All in all, it was about a twenty minute tantrum. The story ended when Dad came home with the ranch and Kamp finally ate his dinner.
I learned a valuable lesson; my house will ALWAYS have ranch dressing so we don’t have to endure what we call the, “Where the Hell is My Ranch?!” tantrum ever again!
Throughout the day – with Kamp - there always seems to be an air of tension that never goes away. During the day, I’m not even aware I’m so tense until he’s beautifully asleep and the tension disappears; I can actually feel my body relax. Part of that is because children with autism become very obsessed over seemingly random things, which explains why I have a bald spot in my carpet. Kamp noticed that the carpet wasn’t perfectly lined up, so he made the only logical choice and picked out the piece that was longer, which of course pulled another one up. He couldn’t let that happen so he picked out another and so on, and so on, and on, and on! Now I have a patch of carpet missing. So whatever it is, whether it’s slamming doors over and over again, or pushing out window screens, or making holes in our walls – he’s always fixated on something.
I think his favorite fixation has ALWAYS been woodchips. The boy loves those damn woodchips! If we are in our yard he has to dump them all over our hose box, or throw them down the window well. Everytime we go to the park and there are wood chips he has a ritual of making a line of woodchips around the entire playground before he can go play.
Last week we were at the park, and he was doing what he always does, making the line with those woodchips. He was so content and focused on his little ritual when a little boy came up and decided it looked fun and wanted to help. Kamp got a look of pure panic and he started moving faster and faster to get his job done. The little boy went to the middle of Kamp’s line and wiped a bunch of wood chips off. Kamp saw him and …….LOST IT! He starts screaming, shoved the little boy and frantically tried to fix the horrible injustice! He realized it was beyond repair and started scraping off the woodchips while screaming his lungs out.
I helped the little boy up, made sure he was okay and took him back to his Dad, all the while recieving evil glares from other parents around the playgound. I helped Kamp up and then did what Jesse and I call “the walk of shame.” It’s where we walk away after an awkward situation with Kamp and feel stabbing glares at our back. It feels horrible and I wish everyone just knew, but I can’t control what other people think, just like I can’t control the fact that my son won’t eat meat, won’t wear a regular swim suit (he has to wear a speedo), or the fact that he LOVES those damn wood chips!
I have three amazing kids: Hadley (6), and two boys, Kampbell “Kamp” (4) and Max (9-months) and I’ve decided to start a blog. Call it fun, call it entertaining, you might even call it depressing, but I call it an outlet to talk about my journey and sometimes fight for my 4 – almost 5-year-old son Kamp, who is funny, energetic, super-smart, so cute and also very autistic.
I first met Kamp in the wee hours of the morning on August 7, 2006 and I was instantly in love! I immediatley felt like no girl would ever be good enough for him. He had huge blue eyes that covered most of his face and he was stretching his neck like Lord Volde…err I mean, “He Who Must Not Be Named” from the Harry Potter movies. How could I not be in love, right?!
Kamp was an awesome baby; looking back, maybe a little too awesome. He was completely indifferent! Pick me up, dont pick me up – whatever. He always wanted to be swaddled super tight and by the time he was six-months-old he would quietly watch an entire movie (Shrek was his favorite) in his bumboo chair. It was heaven!
By the time he could walk we were constantly finding him sleeping in the weirdest places. When we found him sleeping in a bottom drawer in our kitchen we should have noticed something was off. We just thought he was like my brother Don, who just didn’t really care to be social and had some different quirks. Thats fine, right?
It wasn’t until he was fifteen-months-old that I started to get concerned. He didn’t show a preference for anyone, and he treated his sister, who is just eighteen months older, like she didn’t exsist. He never responded to words like “cookie” or “sippy,” things that other kids his age would’ve done flips for. I had a sneaking suspicion that he was deaf. After tests were done, it was determined that he wasn’t hearing very well due to build up in his ear canal from chronic ear infections. We had tubes put in and thought that was that.
When we didn’t see any improvement, my brother-in-law Dr. Toran MacArthur - who is amazing by the way – suggested that we have him tested for autism. We waited six agonizing months to get him in, and after about two short hours of observation and about 100 questions, we were given the diagnosis, Autism. Then the psychologist said, “With early intervention it is possible for him to have a completely normal life. Here are some books you can read and the number for Kids on the Move in your area. Good Luck.” Wait! What? We were scared, shocked, dumb founded! What about a cure, where’s the instruction manual and follow-up visit? The problem with autism is that there really isn’t a set plan; with a kid like Kamp who doesn’t say a word and has never really mimicked it’s all a kind of guessing game. So, let the games begin, right?
Whew! That’s where our autism story begins. It is a terrifying, emotional, clumsy, HILARIOUS and always suprising journey full of laughter, frustration, tears and joy, all wrapped up in one beautiful little boy – one I will never stop fighting for!