Why are kids so cruel? Addressing the “Ice Bucket” challenge prank

Recently, I read a news story about a few boys who thought it would be funny to prank an autistic boy by dumping feces, pee, cigarette butts and other disgusting things on his head for the “Ice Bucket” challenge. I normally don’t get involved in things like this, but since this is my blog and I can say whatever I want. I’ve decided to address it because this is a HUGE fear of mine.

I’m not just worried that children might bully Kamp and Max. I’m terrified of kids (in general) who want to be cruel; children who think it’s funny to hurt or torture others who are defenseless. I’m afraid that my boys will one day mistake a cruel child’s act of torture as a sign of friendship.

In my studies of psychology, I can hypothesize two possible reasons kids behave this way. First, they are mentally unstable; meaning they may have a chemical imbalance, or have a disorder themselves that needs to be addressed so that they can overcome their own deficits. And second, they learn to be cruel at home. These are children who are free to do whatever they want while their parents make excuses for them – their “perfect” child. These are they who may come from homes riddled with problems. Perhaps they watch their parents treat others with disrespect. They hear their mom’s gossiping, and their fathers playing the role of, “tough alpha-male.”

Well, I for one have had enough. I’d like everyone to take a look at themselves and how they talk, or behave around their children. What are you teaching them? Do you gossip about others and then watch your son/daughter treat their friends unkindly? Do you talk tough, and then watch your child pushing others around? Remember, kids mimic what they see.

I know that some children have a harder time socializing than others. Learning to be a friend takes time and is a process, but there is a difference between learning how to be a friend and being cruel. Take a look at how your children treat others and then take a hard look at how YOU treat others. Kids pick up on more than you think they do.

Let’s take a stand as parents and start in our own homes. If you spend time teaching your children love and compassion, that’s who they will become.

My heart goes out to that autistic boy and his mother. Because I know she worries every day about her special boy, and her worst fears came true.

In the words of Ellen Degeneres let’s all just, “Be kind.”

Kamping with Autism: To the Max

I’ve been avoiding this post, but I think I’ll feel better once its done. Max has officially been diagnosed on the autism spectrum.

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.

I was so excited. Free behavior assessments and doctors watching his brain development?  It sounded very reassuring. I signed us up and the assessing began.

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.

I felt awful. I’m angry, and SO frustrated!

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!

Caution! Autism on Board.

A few months ago Jesse’s dad, Dalton, called us up and invited us down to visit in Texas. He and his wife, Patti, rented a beach house just south of Galveston and we were invited to join them for a week of fun, sun and as much relaxation as Kamp would allow. We thought about hopping a flight, but figured that, although it would have been awesome to be on “Good Morning America” we’d have to drive rather than take Kamp on an airplane. (We would have totally gotten kicked of the airplane.)

We packed up the car, set Kamp up in his little corner all snug and tight and began our journey. Twenty-one straight hours to San Antonio, Texas. We felt like it was be better to get the drive over in one shot – the bulk of which could be done while the kids were asleep. In theory, it seemed like a good idea. Seemed that way.

Kamp did well through the drive down. He had his movies. His favorite snacks. His odd assortment of toys.He was happy. Content. Although he didn’t really sleep like we had hoped, there were no major meltdowns; just the normal screams and thuds we’d become accustomed to.

When we finally got to San Antonio, Kamp had a great time! We saw a few family friends (To protect their identities, we’ll call them Brock and um…Tara.) I protect their identities because Kamp stripped down (naked) and went for a dip in their pool. Before he got out, he decided to leave a little something for them to remember him by (he pooped in the pool).

At another friend’s home (Let’s call ’em Ben…and Lisa), he walked in, helped himself to a slice of pizza in the kitchen and polished off a few empties on his way out – all without saying a word. We got to eat the BEST Mexican food in the world, Teka Molino, and set off for a few days of sun, Gulf, and BBQ – a lot of BBQ.

We spent a few great days with family, and Kamp never wanted to get out of the water. That boy is obsessed with water. Hadley got to spend some quality time with her Grandparents, and Max’s fear of water was alive and well – still is.

The Return Trip

To help me describe our journey home, I refer to the classic film, “What About Bob.” When Bill Murray’s character, Bob, goes on a long bus ride and discovers that his beloved gold fish, Gil, has had a melt down. Watch the movie and you’ll know what I’m talking about.

Kamp had been out of his routine for over a week. He had been in new places (e.g. the beach, new houses and the BIGGEST toilet ever), and he had been holding it in for as long as he could. We endured a few car tantrums, but nothing could have prepared us for the mother of all melt downs we endured when we decided to pull over and grab some food at the Wendys in Moab, Utah.

It was very busy, we were all dirty and grunge from our long drive, and when we got in the back of a very slow moving line, Kamp  assumed his normal position on top of Jesse’s shoulders. He was hungry, tired and at that moment decided to let a handful of unsuspecting lunch patrons know how he felt about his life.

Out of nowhere he began screaming and trying to get down from Jesse’s shoulders. He hit Jesse and laid on the ground screaming refusing to get up (it literally sounded as though he was being beaten in the middle of Wendy’s). He kept kicking, hitting, and slapping at his Dad all while screaming. Jesse finally picked him up and dragged him outside.

Do you know what you do when that happens? Nothing. You get your food, avoid eye contact, wipe the sweat off your brow (from the anxiety surge), hold your head as high as you can, and remind yourself over and over that you don’t care what those people think all while feeling like if someone said something, you would explode into tiny little pieces. Needless to say, that day, the folks at Wendy’s got lunch and a “show.”  That one was on the house!

The Outsiders

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 😉

Why I Walk for Autism

I have tried several times to sit down and write a few blog posts, but the things I seem to want to talk about are a little difficult for me and I have continued to put them off.

So – to get the ball rolling I have decided to talk about our most recent adventure, the Walk Now for Autism Speaks walk in Salt Lake City this last weekend. It (Walk Now) is a fundraiser to help raise money for Autism Speaks and research to uncover the mysteries of autism.

I really want to support research. I am determined to understand how my son who was pronounced healthy at 2:02 a.m. on August 7, 2006, who loved to snuggle with me, and smiled every time I sang him a lullaby, began to fade away. I realize uncovering the truth won’t change anything, but maybe understanding will give me some comfort.

That’s why I decided to start supporting this worthy cause, and in turn, began harassing all of my friends and family every year. But even more than the fundraising, the Walk is a highlight of my year. We aren’t able to do very many things with Kamp – he’s just not accepted in very many places. But once a year, we can take him to an autism friendly event that’s just for him.

The Walk is a place where every parent understands why he refuses to wait in line and will not get out of the bouncy house. He can scream, cover his ears (because it’s too loud) and we won’t get dirty looks. Instead, we get smiles and looks of compassion from people who know what it’s like. Its very uplifting, and Kamp has a blast.

This year we decided to do t-shirts and now Kamping With Autism has a logo! We picked his favorite color, lime green, and we looked good! It was a wonderful day that celebrates everything autism. A big thanks to family and friends who took time out to come to the walk, and a special thank you to everyone who was able to donate to this VERY worthy – and important – cause.

Leaving him behind

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!!

Summer Days Are Here Again

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.

Water parks are too busy and it’s impossible to wrangle my toddler (Max), and try to keep Kamp contained too. So, we don’t do water parks either. Every year our summer options become less and less.

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!!!!

Waiting to hear, “I Love You.”

Along with autism, Kamp has been diagnosed with Receptive and Expressive Communicative Delay Disorder (RECDD). It means that, not only does Kamp not use language, but he has a hard time understanding it too.

For example, Kamp can take a picture of a bus, match it to a corresponding picture and repeat the word bus (after I say it first), but he does not understand that the word bus represents the thing in the picture. Nor does he understand that the yellow bus waiting for him outside our house is the same thing as the ‘yellow thing’ in the picture.

He doesn’t see the importance of language, and doesn’t know how to think in abstract terms. How do you teach a little boy that language is important when he doesn’t know what language is? Therein lies the difficulty.

Ever since he was diagnosed with autism, I have really pushed language hard. If Kamp could get over the language hurdle I feel like everything else would come.

A few months ago I was at the gym when I answered a phone call from Kamp’s speech therapist. She told me that after recent testing I shouldn’t count Kamp out for using some language, but the likelihood of him
talking the way we had hoped was unlikely. I began to cry. I tried to hold it in but I stood in the middle of the gym – on the treadmill – with tears running down my face  – and I cried.

Don’t mistake Cry-Fest 2012 for surrender! I will never give up fighting to find a way for Kamp to communicate. Whether it is speaking, signing or writing, like the inspiring Carly Fleischmann, I will find a way for him to talk to me.

Why?

You see, I’ve never heard my 5, almost 6 year-old-boy, tell me he loves me. I don’t push him to mimic that phrase because I don’t want him to simply regurgitate it. I want to hear it for the first time – one day – when he can say it on his own, because he means it. I don’t care if it is spoken, said in signs or written down, I long for him to say, “I love you” every time I send him off to school or kiss him goodnight.

I make an effort to soak it up every time one of my kids tells me they love me. I realize it’s something precious and important. We all want our children to love us, and I know Kamp loves me; it would  just be so sweet, and amazing, to hear it too. I don’t care if it said silly, or with attitude; when I hear those words it lights up my heart and I can’t wait to hear them again. I will never get tired of hearing “Mom, I love you.” And when it comes to my little Kamp, I will wait forever.

I Am Super! a book by Beth Black

This is what the end of my rope looks like

Ok I have been out of the blogging game for a bit – but I’m back baby!

I have been trying for a while to figure out exactly what I wanted to write about, and after some recent events I have decided to climb up on my soap box for a minute. So here I go:

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?