Baby Bubba Goes To Preschool!!!

Let's just move past the fact that I said I'd be back here with lots of posts and then didn't follow through, ok?  Because we've got bigger things to talk about!  

Cammy had his first day of Pre-K today!!!

Yes, that's right.  Our baby boy, the one who we decided not to send to preschool 8 months ago because we didn't feel was ready, went to school today.  For 3 hours.  And LOVED it.  I'm elated to say that the first day was a success on all accounts.  There was no crying, neither from Cameron nor his parents, nor was there any vomiting on the part of his worry-some parents.  Because, let's face it folks, when you send your non-verbal autistic child off to a whole new world of which you are not a part, it's difficult!   








Cameron walked right into his classroom and sat down at the table.  He has a para (short for para-professional) who will be with him guiding him throughout every morning he's at school.  She seemed nice, though for the life of us we can't remember her name!  I'll be sure to learn it when we go back on Thursday!  His teacher is a very sweet, patient woman who seems genuinely excited to have Cameron this year.  She has told us on numerous occasions that she will do whatever is necessary to make Cameron feel welcome and comfortable in the classroom.

I'd say he's already feeling pretty comfortable there. 

Cody and I had a leisurely breakfast out after the drop-off. I mean, really, who knew those existed?! I am still in awe that I never had to say once during the meal, "Please get out from underneath the table," nor did I ever have to tell Cody multiple times to eat his meal.  I don't think it gets much better than that!



We are so excited to see where this adventure takes our boy.  I think a lot of people I've talked to today are surprised that I didn't cry, but I'm actually really excited about it.  Cameron has been doing amazing, great things in his therapies and at home in the past few months and I really feel that school is just going to be a catalyst to even greater things.  So stick around, folks, because I'm pretty sure you are about to witness something wildly spectacular.

Four Words

There are so many things I'd like to see him do. 

• Play with his brother.
• Eat a banana.
• Wave bye bye.
• Really, truly hug me.
• Play correctly with numerous toys.

The list could go on and on.  But those things, all of those things, I'd forfeit in a heartbeat for just four words. 

I've heard them from Owen countless times.  I know what they sound like.  But I don't know what they sound like from him.  I long to hear his sweet voice whisper them to me.  I picture the smile on his face as he would say them. 

Four words. 

I know he says them to me in his own way.  The times he crawls up in my lap and wants me to read him a book.  The times that only I can comfort him like no one else can.  The way he always checks to make sure I'm at therapy, to be sure that I haven't left him there.  I know he's saying them.

Four words.

I know that compared to that list that is seemingly a mile long, four words seems so minuscule.  But still, I lie awake at night, dreaming of what they might sound like coming from his sweet lips.  I think about the first time I might hear him say them.  Where will we be?  How old will he be?

Four words.

I love you, Mommy.

I hope and pray with everything I have that I hear them...someday.

Communication

By now, I think most of you know that Cameron does not speak.  And when I say does not speak, I mean he does not say words.  None.  However, that does not mean that he doesn't communicate to us in his own way.  He speaks, he just speaks much differently than your average 3 year old. 

A few weeks ago I found a list I had written early last year, tucked away in a notebook.  It was a list of the words Cameron had.  Yes, he did have words at one time.  The list was full of words like "Owen, cool, horse, dog, cat, elephant, tractor, hay, Elmo, Cookie (as in the Monster, not the food)..."  I could go on with them, but they are mostly like this.  Do you know notice a pattern with them at all?  With the exception of "cool," (which he only said when Owen or someone else said it to him, which is called "echoics") they are all nouns.  That's because Cameron mostly used his words to label things.  You could ask him, "Who/what is that?" and he would label it for you.  But he never said, "I want milk," or even "Milk?" as a means to get something.  I think this is a Red Flag that can often be missed by parents and doctors, because at the well-check, your doctor might say, "Is he talking?"  Well, yes, he was talking.  What the doctor needs to say is, "Is he using words to communicate with you or to you?"  They are two very different things. 

If he wanted something like milk or a snack, he would direct us to wherever that thing was, either by putting our hand on it, or trying to physically push us in the direction of whatever he wanted.  He still does this pretty often, but he is learning a new way of communicating with us in his various therapies.

This new way is called Picture Exchange Communication System, or PECS.  Though it is kind of involved and it has been said that if you are just using pictures you are not neccessarily using the actual PECS, the basics of it involve Cameron handing us a picture of whatever it is that he wants.  It is a very slow process, as he first has to understand what each picture is, and then understand that he physically has to hand it to someone in order to receive that item. 

There are generic PECS pictures, which look like this:

If you'd like to go more specific with it, you can take photos of different things and make PECS cards out of the photos, like this:

We started this system when we had AEA coming to the house a couple of times a month.  Though he did pick up the use of the "Snack" card and the "Milk" card, it pretty much stopped there because the therapy just wasn't as intensive as it needed to be in order for him to learn the system.

Currently, we just have a few that we use pretty regularly and they are stuck to the end of our kitchen island.

In his ABA therapy that we do at the house, he has what they call a PECS book, which looks like this:

They take one or two PECS cards out of the book and velcro them to the front of the book like this:

Then Cameron is supposed to choose the PECS card which has the photo of the object he wants, give it to the therapist, and then they will give him what he asked for.  He is progressing so well with this that the Supervisor thought the three girls that work with him might be recording the data incorrectly!  She just couldn't believe how quickly he's moving along!

In his Speech and Occupational Therapy at ChildServe, he uses PECS but they go one step further.  The PECS cards are attached to a GoTalk, like this:

This is a simple voice-output device.  The Speech Therapist puts 4 PECS cards on the GoTalk, and then records with her voice what each one is.  Usually, she will say, "I want..." and say whatever is on the card.  Cameron picked this up very quickly as well.  It didn't take him much time at all to figure out how to use it and the power that it gave him.  He is making choices with it all time in therapy sessions now!

We have been trying to figure out exactly how we are going to implement all of these at home.  Obviously, our goal is vocal speech, but until that happens, we need something in place so that our little guy doesn't get frustrated because he can't tell us what he wants.  We were going to purchase a GoTalk, but the one with 4 pictures is about $200.  You can get them with 4, 9, or 20 pictures on them.  Rather than have to keep spending money on these as he moves through each one, we started looking for different ideas.  We came up with the iPad!  There are lots of apps that you can download specifically for kids with autism, including all different kinds of communication apps.  We are going to be experimenting with one in his therapy first to see how he responds to it before we purchase one.  But his Speech Therapist thinks that the iPad is where communication for kids with autism is heading so we are hopeful that it will all work out for us!

So who wants to take bets that Cody and I could be playing with an iPad in the next couple of years because Cameron no longer needs it to communicate with us since he'll be talking? ;)

Why We Walk

Walking is not just about the money for us.  Yes, we want to further autism research but we also want Cameron to be seen and heard.  We know there are so many equally deserving causes out there, but for us, this isn't just a cause.  It's our life.  Autism is not just who Cameron is.  It's who we are.  And all we are trying to do is to give you a glimpse into our life so that you might understand us a little better.  I tried to think of a way to share the wonder that is Cameron, as well as trying to quickly explain why Autism Awareness is so important to us.  This is what I came up with...

Make an on-line slide show at www.OneTrueMedia.com

Please feel free to share it with anyone and everyone you know.  Thank you for supporting us in whatever way you can, whether it be monetarily, walking alongside us, raising funds for us, lending an empathetic ear, or simply cheering us along as we navigate our way through this journey.  Words can't express how grateful we are for the friends and family who continue to rally around us.  And because of your support, we know that one day Cameron will say, "Thank you" to you himself.

Doing My Part

Our lives begin to end the day we become silent about things that matter.
         -Martin Luther King, Jr.

I saw this quote the other day and it really got me thinking.  In the last year, I have done a lot of contemplation.  I have always said that I was never cut out to be the mother of a child with special needs, even before I had one.  I'll never forget the moment it started to sink in with me that Cameron had bigger things going on than just an unwillingness to do things according to a doctor's timeline.  I had a complete breakdown.  Cody was with me and all I could keep telling him was that I couldn't do it.  I didn't have the strength to do it.

After months of contemplation and soul searching, I realized a few things.  The first one was that I didn't have a choice as to whether I wanted to "do this."  When I chose to bring my children into the world, I made a committment to be there for them, no matter the circumstance.  So, I pulled myself together and started showing up for Cameron, because it was my job.  In doing that, I was able to see him in a whole new light.  I started to see that my reluctance to accept his autism meant that I didn't accept him.  As parents, it is our job to love every part of our children, even the most difficult parts.  I never want my children to feel like I don't love them for exactly who they are.  And autism is who Cameron is.  It is, of course, not all that he is, but it is a big part of him.  And it is a part that I love wholeheartedly.

In the midst of all this soul searching, I also came to realize that I can do this.  And as much as I thought I was never cut out to be a special needs mom, I now see that it's exactly what I was meant to be.  I've reached an entirely new level of patience and understanding in the last year.  And that's all because of Cameron.  He has taught me so much in his short life.  So much more than I will ever teach him.  If there is ever a time that I am frustrated with him or stressed out over a situation, I just remind myself that as difficult as it is for me, it is 10 times more difficult for him.

I've also realized that as his mother, it is my job to be his voice for him.  It's my job to help the world see and accept him for the wonderful little boy that he is.  I've always said that I never wanted this to become an "autism blog."  I want it to continue to be a blog about our family's journey.  But, our journey includes autism.  So, in light of April being Autism Awareness month, I want to do a number of posts about Cameron and our everyday life with him.  I want to open the door to life with autism and show people what it's really like, even if it's just here on my little blog.  This is not in order to gain pity in any way, but to raise awareness.  I mean, let's face it, autism is growing in epidemic proportions.  There's a good chance that Cameron isn't the only child you know or will meet with autism.  I am always amazed when I tell different people about certain things that Cameron does and they are completely surprised.  They generally have no idea what autism entails.  And if those of us who live it everyday don't share our story, how can we expect anyone to understand what we go through?  So, I'm doing my part and refusing to be silent, because autism matters.  Cameron, and the million others like him, matter.  And it's my job to show you why.

It's That Time of Year Again!

We are fast approaching June 11th, the date for Walk Now for Autism Speaks.  Our team, Cameron's Crusaders, will be partcipating again this year.  We are currently working on recruiting team members for the walk.  If you'd like to join us, go to our Team Page, and click on the "Join Our Team" link.  Once you register, you can choose a URL for your own donation page to which you can direct your friends and family to donate. 

Can't walk with us but still feel compelled to help?  That's ok!  You can still join our team and help us raise funds, or you could donate to our team, help us come up with fundraising ideas, or just cheer us on!  We are grateful for any and all support we get, no matter how big or small you might think it is.  We have a few fundraising ideas in the works, which will require help from team members, but I'll post more about that later.  For now, I wanted to share with you a fundraiser that an old friend of mine, Sarah (Will) Davenport, is doing for us.  Sarah is a Scentsy Consultant.  Scentsy is kinda like scented candles, but there are no flames or wicks.  They have warmers that melt bars and fill your home with lots of different yummy fragrances!

So here are the details.  Scentsy is selling a Full-Size Warmer called Piece by Piece.

$5 of each sale of the Piece by Piece warmer goes directly to Autism Speaks.  But that's just the beginning!  Sarah is donating 25% of each sale, no matter what you buy, directly to Cameron's Crusaders!  So check out our party and see if there's anything you'd like to buy!  Just make sure it says that you're shopping the Muhs Autism Fundraiser party! 

If you have any questions about the Scentsy fundraiser, the walk, or want to let me know you want to join our team, please email me at semuhs@yahoo.com. 

Also, April is Autism Awareness month.  I've decided I'm going to do a few posts about our life with autism throughout the month in order to do my part in raising awareness.  And I can't wait to show you the awesome video I made!

Brothers

When I was pregnant with Cameron, I remember the anticipation of finding out whether we were having a boy or a girl.  Anyone who knows me knows that I want a daughter so badly, but I am being completely honest when I say that with Cameron, I really hoped for a boy.  Obviously, I would have been happy with a girl but the idea of two boys started to grow on me before we ever even knew he was a boy.  I thought about how much fun it would be for Owen to have a brother.  I envisioned the two of them running through the house together, wrestling, playing with trains.  I could see a sweet little boy, toddling behind his big brother and trying to do everything he was doing, even though he would be too small to do it.  I saw Owen helping and protecting his little brother, just like big brothers are meant to do.  I heard them arguing.  I heard them laughing.  I saw this:

While it's just a snapshot in time, I think you can pretty much see a lot of that in this photo.  You probably see two brothers having fun, laughing and being silly together.  Just like the two brothers I saw before they were even two brothers.  What you don't know about this photo, what you can't see because it is, indeed, just a snapshot in time, is that they weren't really wrestling or playing together.  In fact, the little brother smiling so sweetly in this photo probably wasn't paying too much attention to the older brother.  The older brother wasn't wrestling with him, but more hanging on him, trying to somehow get into his world and get him to interact with him.  There are smiles, yes.  The big brother always smiles when trying to hug on the little brother.  But that's not why the little brother is smiling.  He's probably smiling because I asked him what a monkey says and he thinks that's funny.  Or he could have been smiling for reasons completely unknown to the rest of us there.  And while I don't remember for certain, it is a pretty safe bet that as soon as this photo was taken, the little brother promptly pushed the big brother away from him and they both went about their business, playing very differently in their own worlds. 

This is not to say that this wasn't a fun moment for our family.  Quite the opposite, actually.  It was a very pleasant evening where we all enjoyed ourselves and I still look at this photo and think it is adorable.  It's just not exactly what I envisioned 3 years ago when I heard the words, "It's a boy."  And that has been one of the biggest hurdles for me since Cameron's diagnosis; something I struggle with daily.  To let go of what should have been and accept what is.  And more important than just accepting it, finding happiness in it.

Monday night we went to our first PTA meeting.  They provided pizza and free child care so we figured we would give it a go and see how Cameron would do.  If he couldn't adapt, Cody would just take him outside and wait until the meeting was over.  Cody took him to the child care room and talked to the young girl about Cameron.  He gave her his cell phone number just in case Cameron didn't do well and then came back to the meeting.  After about 15 or 20 minutes, he went to peek in the room and see how things were going.  The young girl gave him a thumbs up through the window.  But then, Owen somehow saw Cody through the window and yelled, "Daddy!!!  Cameron doesn't like it in here!"  Cody went in to see what was up and Owen proceeded to tell him that Cameron kept taking him by the hand and leading him to the door in an effort to "tell" him that he wanted to leave.  In a room of about 10 kids and a couple of babysitters, Cameron knew there was one person in that room he should go to.  He knew he belonged to Owen and that Owen belonged to him.  Even though there are so many days where it seems like Cameron doesn't see him.  Where it seems like Owen is just another thing in the room to him.  The little brother went to the big brother for help.  And the big brother, always the protector, knew that he had to yell for Daddy to help his little brother.

Maybe what is isn't so far from what should have been after all...

Klompen Classic

For those of you who don't know, Cody took up running in the spring.  He did a "Couch to 5K" program that started him off slowly, alternately running and walking, until he got to the point where he could comfortably run 5K.  I am proud to say that he has now participated in four 5K races and he is loving it!  His second race was the Klompen Classic during Tulip Time this year.  Owen also participated in the kids fun run.  Unfortunately, I didn't have the settings correct on my fancy new camera I got for my birthday, so I have no photos of Owen actually running!

Owen and Cameron had a ball playing around while we waited for the kids race to start!

Owen is stretching and preparing for his big race!

A little more stretching!

3 blocks is a long way to run!  It can really wear a guy out.

This is the group of people from Pella Corp. who participated in a weight loss challenge and also ran in the race.  I am proud to say that my awesome hubby won the challenge!  He lost almost 30 lbs. (I think, I can't remember the exact number because it was too long ago!) and he looks awesome!  He looks and feels better than he has in years!

Daddy after he just crossed the finish line!

Owen was so excited to hug his daddy after the race!

Congrats on a job well done, Dad!  We are so proud of you!

He's a New Man!

Back in May I finally decided that Cameron's hair was shaggy enough that I was going to have to break down and get it cut.  I wasn't avoiding it due to the fact that I'm a fan of the shag.  It was more due to the fact that I wasn't very optimistic about how it would go.  Our Parents-As-Teachers lady, Sandy (who is wonderful, by the way!), called her own hair dresser for me and discussed Cameron with her and asked if she'd be willing to attempt cutting his hair.  She does a lot of extended hours so we could go in the evening when no one else would be there, which I thought would be good.  She graciously said she would love to cut his hair!

So one Friday night while Grandma Lynn was here visiting, she and I took Cameron to get his hair cut while Cody stayed home with Owen.  We took milk, a snack, and a portable DVD player and I'm happy to report that Cameron hardly knew she was back there cutting on his hair.  He barely made a peep!  I didn't get any photos, however, because I was holding him in the chair.  Grandma got some with her camera though, so I'm hoping to see them soon!  But I do have some good before and after photos.

BEFORE:

AFTER:

 

Owen said, "Cameron is a new man!" 

He wouldn't stop long enough for me to get a good photo, so that's the best you get.  Unfortunately, it was only beginner's luck because I took him back a couple of weeks ago by myself, thinking it would be a breeze and it was not!  By the end of it, the hair dresser, myself, and Cameron were all sweating.  I think it's safe to say it was the longest 15 minutes of my life.  Or at least of that day. ;)  Thankfully, the hair dresser is one of the nicest people I have ever met and she was so understanding.  She doesn't even charge me what she normally charges because she said she thought I had enough stress in my life!  I've told Cody that he will be going to the next one.  I wouldn't want to deprive him of all the fun I'm having acting as a human straitjacket to what I think is the world's strongest 2-year-old.  That just wouldn't be fair, would it?

The Autism Roller Coaster

Well, we are almost 4 months to the day from Cameron's diagnosis.  The last 4 months have been such a roller coaster for me.  I can go from acceptance, to denial, to peaceful, to upset and depressed about all of this all in the same day.  I keep telling myself that he is alive and well and that is the most important part.  All the other stuff we can work with.  But then I see a child who is about his age bouncing around, talking, and interacting, and I can't help but go to the "if onlys" and "what ifs."

We are still doing therapy through Early Access.  Two women come twice a month to work with him.  It's very slow-going because he is very reluctant to do what you ask him to.  We also have a wonderful speech therapist who comes once a month.  Unfortunately, though, that is nowhere near enough.  So we have been working on getting him approved for a waiver through the state, which will help cover the cost for a lot more therapy.  He has occupational therapy and speech therapy evaluations at a place called Child Serve in early August.  I am really excited about that because this is a place that treats only children, so they are well-versed in kids with developmental disabilities.  We are also working toward getting him accepted into a program with The Homestead, where he would receive ABA (Applied Behavior Analysis) Therapy.  The Homestead offers both in-home therapy and on-site therapy.  We are just in the early stages of the application process so we are unsure as to which type we will end up going with.

I am just ready to get the ball rolling on all of this and see some results but, I must admit, the process is very difficult for me.  It is hard to be reminded everyday of the differences in your child and I am really struggling with it.  I have been practicing a lot of avoidance lately, which is partly to blame for the slow-moving wheels.  A future of unknowns is so difficult for me to face.  And teaching your child things that are supposed to come naturally to us as we grow is so frustrating, not only for me but for him as well.  It is all definitely a learning process as new sypmtoms emerge and we navigate these waters, which are oftentimes rough.

Two nights ago, Cameron woke up around 2 in the morning because he was having a difficult time breathing due to a cold.  He was screaming and crying and nothing we did would calm him.  We tried all of the normal tricks that usually help, but that night it just wasn't working.  After he screamed non-stop for nearly an hour, I decided I was just going to have to put him back in his crib and let him cry it out.  I turned to look at him as I walked out of his room and saw him put his belly over the crib rail and flip himself out of the crib.  He landed head first on the carpet, which resulted in more crying on both our parts.  I just stood there crying, praying for the strength to know what to do.

Cody came in to check on us because he heard it all on the monitor.  He tried to take Cam from me because I was crying but Cameron held on so tightly to me that Cody couldn't take him.  So I sat down in the rocker with him and we cried there together.  As I rocked him in my arms like I did when he was a baby, he fell asleep, clinging to me.  In that instance, my tears turned into happy tears.  He needed me.  Sometimes it feels as though I am just a vessle to getting him what he wants.  Like anyone else could do it for him as long as they do it correctly.  But that night I realized that not only does he know his mama, he wants me, too.  And he didn't want me to get him food or milk or turn on a movie for him.  He wanted me because he was scared.  He needed to be comforted and he needed it to be done by me.  And that felt pretty darn good.

It was also in that instance that I realized that not only does he need me to comfort him, but he also needs me to go to bat for him.  Cody and I are the two people he has in this world to count on to fight for him.  And that's exactly what we're going to do.  I just continue to pray everyday that God grants me the strength to do it.

2010 Walk Now for Autism Speaks

Right before we got Cameron's official diagnosis, I came across some info. regarding the Walk to benefit Autism Speaks in Iowa.  I knew that would be the perfect thing for me.  I needed to redirect all these feelings I was sorting through with Cameron being diagnosed into something positive.  Autism Speaks is the largest non-governmental supporter of autism research in the United States.  All the funds collected at the Walks across the country go directly to autism research.  Because of the huge role Autism Speaks has played in the last 10 years, we are so much closer to understanding this puzzling disorder than we ever have been before.  And I feel so honored to be a small part of this puzzle. 

So Cody and I got to work!  Cody handed out flyers at work, we sent up donation pages on the internet, we sent out a letter to family and friends asking them to donate, we asked Facebook friends to donate, we recruited family members to help us gather donations, I baked cookies and sold them at a garage sale, we used funds we made from selling our unwanted things at a garage sale, I baked a cake and Cody took it into work...we worked our tails off trying to get donations.  We are, after all, two very competitive people!  I am proud to say that our team, Cameron's Crusaders, ended up being the Top 3rd fundraising team for the Iowa walk, collecting $5,140 from all of our wonderful family and friends who graciously opened their pockets and gave so generously.  I was also honored on Walk day as a Grand Club member and for being the Top 3rd individual fundraiser for raising $2,565.  However, I was only honored because it was my name on the page.  Cody worked just as hard as I did to get that money!  We also collected an additional $1,060 in checks that we mailed in under Cody's walker ID.  Unfortunately, it didn't make it before Walk day so he wasn't able to join me on stage for the Grand Club announcement, even though he should have been!  And none of this even counts the many donations that will eventually be matched by various companies.  I have not counted that all up, but it is well over $1,000 and probaby closer to $2,000!  We are just amazed and humbled by all of the support we have received over the course of the last two months.  It has meant more to us that we could ever express.

So enough babbling!  I have lots of photos to share!

Our 2010 Cameron's Crusaders--The Balch Family, The Eisenbarth Family, The Knox Family, The Youngman Family, my parents, Cody's parents, and, of course, us!

This is the shirt that we wore.  I asked my friends, Eric and Jayne Balch (who own a t-shirt printing company in Omaha, Nebraska called Midwest Impressions) if they would be able to print shirts up for us.  They went above and beyond with this shirt and it is better than anything I could have ever imagined!  And not only did they design and print it, they donated half the cost of the shirts to us!  Eric's dad, Ron (my dad's boss) donated the other half!  We are so grateful to them for working so hard to get them to us and for joining us at the walk!

The Grand Club Members on stage

These photos are just to give you an idea of the amount of people there walking.  There was about 2500-3000 people there!

 

Our team walking!

Owen and Lizzie--he always manages to find an older lady! ;)

Owen and John Balch

Lizzie, Cameron (who was a little hot and didn't want to have his photo taken), and Grace

There were also bounce houses, slides, refreshments, and a sensory tent there!

 

Matt, Logan, and Jess

 

They had these baby pools all around with ice and bottles of water.  Our water baby found one and would not stop until he was in it!  Daddy took his shoes and socks off and he loved it!  It is amazing how much water calms our little guy.  He is drawn to it like a moth to a flame.

Mom and Dad pose in front of the Midwest Impressions van for Ron!

After the walk, most everyone came back to our house for lunch and just to hang out.  The adults sat around and talked and ate and played bags, while the kids enjoyed the Wii and the sprinkler!  There are no photos of the kids in the sprinkler because they kept squirting people and I was too afraid to go near them with my expensive new camera!

Andy and Cody

Matt, Ben, and Eric

Eric

 

Claire and Owen (sporting some borrowed goggles)

We really couldn't have asked for a more perfect day.  The weather was great and the company was even better.  We've already got plans in the works for how to make everything even better next year!  So come on out and join us--we guarantee a great time!  And thanks again to all who donated and walked.  We feel so blessed beyond measure.