After the Storm

*I know these pictures are quite laughable considering what happened elsewhere in the southern region. I'm simply documenting what happened at our house. Please pray for those who have lost loved ones and homes.

We are ok after the storms. Still a little shooken up though. I still have not heard the official confirmation of a tornado touching down but I do know for a fact that the rotation was there. Our house suffered minor damage but will possibly need a new roof and a complete replacement of all trim as it looks like a beaver chewed on it. Most of our neighbors with vinyl siding have holes now but our old-school composite siding held up and came away with only dents. Even with all of the mess left to clean up, we feel incredibly blessed. Unfortunately, cities south of here did not come away without widespread damage and numerous fatalities. What happened here does not even begin to compare.

Just minutes before we hunkered down in the bathroom. All 4 of us and the dog.

The beginning of the first part of the storm. You can't really tell here but the hail was all the way up to between golf ball and tennis ball sized.  Our house shook and it sounded like a train was running over us.

I hate this is blurry. This was just after the first round of hail.

Another round of hail, heavy rain, and intense wind.

It does not look so bad here but trust me, my car looks awful in person. Notice the holes in the bumper too.

Somewhere under there is a patio, mulch, rocks, stepping stones, and what was a nice patch of new grass.

24 hours ago this was a vibrant rose bush. I can't believe a few flowers hung on. The rest are torn into shreds.

That's our gutter laying to the left.

Strawberries ripped off the vine. Our garden did not fare so well =( 

I also found 3 dead birds in the flattened grass. Sad. Did I mention this all happened on John's birthday?

Pour Your Heart Out: Open Wounds

I admit it. I am overwhelmed...and scared...and tired. So very, very tired.

Yes, we already knew before the official diagnosis that Cameron has Autism. It still does not make it any easier. In fact, making it official is like rubbing salt in the already open wounds. Wounds infected with sensory issues, eating difficulties, and one heck of a language disorder.

I spend so much time trying to understand his disorders in hopes that I can help him manage so he can live a normal life and have a normal childhood. It's not what I want to do in my free time but it's what I have to do.

I still have a nagging fear that we are not at the end of figuring out what is "wrong" with Cameron. He still has a neurology appointment and for good reasons, though I'm not sure what it is. He still has mysteries lingering: he oversleeps (not typical with Autism), he's small for his age and his looks are still baby-ish, he has a constant swollen gland behind his ear and one that sometimes swells on the nape of his neck, he has never really had a solid bowel movement, he has enlarged adenoids, and there is a problem in his little boy private area that will require surgery next week. What is the connection? I have no idea but I'm convinced it's all somehow related.

So as you can see, we still have a little ways to go to figuring out the puzzle that is Cameron. The wounds are very much open but slowly the band aid will come off and hopefully all that will remain is a tiny scar. Maybe one so tiny that no one will even notice it.

Easter 2011

Ta-daaaaa

Dying eggs

The eggs Cameron dyed at Birth to Three

Easter Baskets

The best picture I could get of them together

White Iris

Yes, she is winking. I did not tell her to do that either.

Feeding the birds with Uncle John

Cameron's Kind of Autism

During the past few months of the knowing but not knowing phase of waiting for an official Autism diagnosis, I have learned that a lot of people do not understand what Autism is. Let me say, I don't understand it 100% but over the past 6 months or so, I have begun to get a good grasp on what Autism is and what it isn't. I'm not going to try and explain the entire disorder here as there are whole websites and books devoted to that but I do want to explain how it relates to Cameron. I have included links throughout this post for terms that may be unfamiliar to some.

First off, it's a BIG disorder with varying degrees so whatever preconceived notions you have, erase them while you are. I recently read the saying "Once you have met one person with Autism, you've met one person with Autism.". In other words, each case of Autism is just as unique as each human. Sure there are commonalities but there are also just as many differences.

Cameron has been diagnosed with Classic Autism (not PDD-NOS, Aspergers, Rhett's, or CDD).  He is considered to be on the least severe end of this form of Autism. Click here for a basic description of all 5 types of Autism disorders.

How did this diagnosis come about?
If you follow this blog, you know that Cameron has a long history of developmental issues including a diagnosis of MERLD. Over time, we have watched autistic "traits" make their appearance into Cameron's life. The a-ha moment for me was when I realized that he was over 18 months and had never responded to his name or pointed at an object. As I began to research, my heart sank because I knew even then, that he would likely receive an Autism diagnosis. When he was 20 months old, I brought up my concerns to the the staff at Birth to Three. They agreed that it was time to have him evaluated. His initial evaluation occurred a month shy of his 2nd birthday. The evaluation was conducted by a highly recommended psychiatrist and his assistant. Both the assistant and the Dr. asked us detailed questions about Cameron's history and current environment. The Dr. spent a great amount of time observing Cameron while he played and then he spent one on one time with him to see how he engaged socially. It was during that time, that Cameron's Hyperlexia made an appearance for the Dr as he read several words to him without any sort of assistance. At the end of the evaluation, the Dr admitted that he did not want to give him a diagnosis just based on the one visit. He addressed the obvious symptoms but said that he wanted to see how Cameron developed socially in the next two months. We left without answers and a small glimmer of hope. During the next two months, the hope began to fade as Cameron's symptoms became more and more obvious. At the re-evaluation, the Dr felt confident that Cameron does indeed have Autism.

What are Cameron's "symptoms"?  (Based on the criteria in the DSM-IV)- *note- I am not a medical professional and have not yet received a written copy of Cameron official evaluation. This is based off my opinion from what I observe on a daily basis.

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)

(1) qualitative impairment in social interaction, as manifested by at least two of the following:

(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction Cameron's eye contact has been noted by several professionals, as being present at times but inefficient. Facial expressions, body posture, and social gestures are not consistently used or used appropriately without prompting.
(b) failure to develop peer relationships appropriate to developmental level Cameron is not shy around peer's but is aloof and often does not notice other's around him.
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest) Cameron has just recently begun to bring us toys and books to hold while he looks at them. He has also shown a little improvement in pointing at objects . He spends most of his time, in his own little world.
(d) lack of social or emotional reciprocity Cameron is loving and enjoys cuddling on his own time. He does not understand the concept of "hugs and kisses", "please and thank you", etc.... He does not always show appropriate response to other's emotions. Once again, he is often aloof and in his own little world.

(2) qualitative impairments in communication as manifested by at least one of the following:

(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime) Cameron has diagnosed MERLD
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others The impairment in this area is very notable. He has never attempted a back and forth conversation.
(c) stereotyped and repetitive use of language or idiosyncratic language Cameron displays echolalia on a consistent daily basis.
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level We have observed Cameron doing the most basic make believe play (holding phone to ear, putting figurines into houses) but it seems almost memorized and is very short lived.

(3) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus Cameron will sit and watch wheels spin anywhere from 30 seconds to several minutes. He has several behaviors that fit this category but this one is the most obvious.
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals Cameron has a very poor tolerance for and complete lack of understanding transition
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) Hand flapping, head hitting, head banging, laying and kicking, spinning with eyes fixated to the side without dizziness, prolonged head shaking and bobbing, entire body jerk and flapping when excited
(d) persistent preoccupation with parts of objects Cameron's main obsession is letters and numbers. He will turn over toys until he finds anything, a UPC code even, just so he can read the letters and numbers. He becomes extremely upset if interrupted during this "activity".

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play Cameron has delays and/or abnormal functioning in all areas prior to three years
C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder. No diagnosis of either of these.


 Cameron has numerous other symptoms that I did not list that are considered to be common among Autistic individuals, including his GI issues, feeding difficulties, SPD, and Hyperlexia. 


So now what?
Currently Cameron is in appropriate therapy. He will continue in speech, feeding, occupational, and developmental therapies probably with little change to how they are structured. His SLP has been using a less intense version of ABA with him and we have seen incredible success. The Dr who diagnosed Cameron suggested that we enroll him in a full ABA program this summer which we hope to be able to do. It was also suggested that we find someone outside of his therapy world and not related who would be willing to visit with Cameron on a regular basis to help him socially and work with him on what he has achieved in therapy. This person would need to be able to use PECS with him and have some knowledge of his disorders. I have some young girls in mind that work in our church childcare that I think would be of great assistance if I can set up a time for them to "play". Today, our SLP even suggested we consider the idea of a young college aged person to work with him outside of therapy. 


Cameron has had GI issues pretty much since birth. Because of his history, the Dr suggested we make some dietary changes so I am in the process of researching that. I would like to get him tested for food intolerances to see exactly what may be upsetting his digestion. We are successfully in the process of transitioning both kids to a diet entirely organic, no HFCS and dyes. I have no yet decided about cutting gluten and casien out of Cameron's diet without first checking with his GI and a Physiatrist.


I realize I just threw a lot of information out there and it may be hard to understand it all at once. As always, I am happy to answer any questions or concerns you have and am willing to find any extra websites to help better explain any of the info I have shared. 

If you suspect your child has any developmental disorder, please don't wait to call your state's local Early Intervention services.

A Boy and His Truck

This truck was actually a handmade gift for John when he was a little boy. Isn't it precious?!

Sleep Study Update

I realized that I never posted an update after our last ENT appt to get the results of the sleep study. At the previous visit, Cameron was scoped and the doctor said that his adenoids were enlarged enough that it could be causing his sleep issues. The thought process here is that if he was having episodes of apnea induced by an obstruction (his adenoids), then that might explain his fatigue and excessive sleep. The sleep study ended up showing that, though enlarged, his adenoids are not the issue. The ENT said that there is no need to do surgery at this time but that if it becomes an issue later on, then he should have them removed. That's good news! However, he did think the issues are neurological so he forwarded Cameron on to a neurologist for further testing. It's not really surprising and honestly, it's time for a full neuro check-up anyways. I'm hoping to not only get answers to his sleep problems but answers to many of his problems. His initial appointment will be in late May. I assume that the initial visit will just be lots of questions so the Dr can determine what type of testing to do and then we will return shortly for an MRI. Please say a prayer not only for Cameron but also for the neurologist to have the wisdom to figure all of this out.

Bring on the heat. I can take it.

I love summer. I would be happy if it lasted all year long but unfortunately for me, I live in a place where I have to put up with winter for about half the year. Sure it's mild compared to most places but I'm cold if it's below 80. I'm pretty sure I would never survive a winter above the Mason-Dixon line.

Summer is slowly waking up....

This kid has got an arm!

Apparently it was hilarious.

Summer clothes are so much cuter than winter clothes.

Coolest bubbles ever. For the record, I refuse to sit outside in the winter and blow bubbles.

Sitting on the front porch watching the moon rise and the stars twinkle. One of my favorite warm weather activities! I even put up with the mosquitos.

Not quite ripe, but within the week they will be ready to eat.

Ahhh. Rosemary.

Spring Tot School- The how's, why's, and what's

Time4Learning Disclosure: I've been invited to try Time4Learning for one month in exchange for a candid review. Time4Learning can be used for homeschool, afterschool and summer skill sharpening. Be sure to come back in a month and read about my experience!

For awhile now, I have been doing Tot School with Sarah Hazel. It's been forever since I have posted anything about it (not since last fall, *gasp*) mostly because it just became too time consuming to post about all of the things she was learning. We also fell out of a good routine as Cameron's therapy time increased but I am happy to say that we getting back on track and have once again resumed Tot School on a near daily basis during the week, and even a little on weekends.

Previously I had been using mostly worksheets and storybooks as the basis of our curriculum. I did not have a set program so I made up my own curriculum which was fine but I had a hard time finding things that challenged Sarah Hazel and fit her style of learning. She does enjoy storybooks but I found that she learns much better by watching a video then putting what she learned to use via hands on experience. During her behavioral evaluation with the psychiatrist we learned that her highest area of comprehension is in visual skills and the weakest area of comprehension is in listening and following directions which means that we are going to really have to work with her to learn how to sit and listen before she heads off to big school in a few years.  We have a LOT to think about as far as the style of education we would like for our kids in the near future but until then, I want to do everything I can to prepare them regardless of what type of school they end up in.

So what kind of curriculum are we doing now?
Well, it's a bit hodgepodge but it's a great one for now! Read on....

I recently got a copy of the book What Your Preschooler Needs to know. The book is divided up into different sections: poems, songs, stories, history, science and art. The poems, songs, and stories are all the typical classics like Five Little Monkeys, Do you Know the Muffin Man and Three Little Pigs.  The history section is full of American history beginning with the American Indians and pilgrims then ending in a section about Martin Luther King, Jr. At first glance, I thought the history section seemed a little too advanced for Sarah Hazel (or any 3 year old), but she is really absorbing it so I guess I was wrong! The science portion covers all of the basics like what makes us a mammal, habitats, the human body, as well as a little bit of Earth science. Each page from the art section has a picture of museum quality art. Often the name of the piece is accompanied by the name of the artist. I have not figured out why this section in this book.Cultural awareness maybe? I somehow made it through school without knowing who painted what and the meaning behind each piece but I digress. As you can see, this book is full of fun info but all of it has to read to her. This is where she struggles with those listening skills but I see this book as a great way to help her work on her area of weakness. The whole time we read our lesson from each section, I am asking her questions so she has caught on that she has to pay attention or else her Tot School time is over. I know that seems odd to say it is punishment when I don't allow her to continue her lesson, but she loves doing it so much that to her, it is punishment. Once we complete this book in a few weeks, I plan to get the next book in the series which is What Your Kindergartner Needs to Know.


I am also still supplimenting with the Kumon Workbooks as well as the Big Preschool Workbooks. Overall, these have been great for teaching her how to listen and follow directions. The only problem we have ran into is that they are becoming less challenging for her but I am not sure how I feel about moving up past the preschool level. We will probably lay off these for awhile and work on reading and writing and then review the concepts that we already covered in the workbooks. She has taken an interest in fractions and time so I don't know what to do. I don't want to do more harm than good but at the same time, if she wants to learn all of these things and is asking questions, how can I not teach her?

The newest portion to our homemade curriculum is computer-based! I recently was asked to review Time4Learning which is a Pre-K-8th grade online program used for homeschool, afterschool, and summer enrichment. The review I am doing is a full 30 day review so I will do a formal post just for Time4Learning sometime at the end of may, when our trial membership is up. Today began day one on the website, and Sarah Hazel LOVED it. There are two levels of pre-k so this allows us lots of activities to choose from based on her level of understanding in certain areas. There are lots of games and stories, all of which so far have captured her attention.

Don't worry. Sarah Hazel does not have her head stuck in the books all day! She is only 3 after all. She still spends the majority of her day doing typical 3 year old activities like nature hunts, painting, and playing with dolls. She is one fun and interesting little girl!

Let's Write!

So what in the world are you supposed to do when your 3 year old asks you how to spell words so that she can write them down? It's not exactly a request I was expecting and honestly, I was pretty sure she couldn't pull it off. But as I have learned recently, Sarah Hazel is not to be underestimated. She has proven to us that she can do anything she puts her mind too.

She first asked me how to spell "yellow", her favorite color. I wrote it down for her and this is what followed....

Sure it's not perfect but for a 3 year old writing her first word, I'd say it's pretty good. She added the "H" at the beginning because she wanted her favorite letter to be with her favorite color. Silly kid.

And then she wanted to write Hazel. Instead of writing it for her, I gave her a sheet with the alphabet printed out on it. I spelled Hazel for her and let her figure out the order by herself. Keep in mind, this is her 2nd written word, ever. 

She then asked to write "Cameron". I have no idea why I did not take a picture of that one but I did save the paper. Instead of giving her the alphabet sheet, I spelled out each letter as she wrote. Without the alphabet sheet, she wrote the letters in random order instead of left to right, but still, she wrote the letters by memorization.

I decided to make the most of this sudden interest in writing so I bought her some writing workbooks so that she could learn the correct way. So far, so good.

Pour Your Heart Out: One Green Bean at a Time

I haven't written a Pour Your Heart Out Post in a few weeks because I feel like I have nothing to Pour My Heart Out about other than my own whining and self pity. Blah.

But truthfully, I'm tired. Tired of dealing with all the madness. Tired of therapy visits, doctor's appointments, diagnosis's to research.

I don't even know what normal is but our "normal" wears me down. Six and a half hours a week in therapy for Cameron plus daily weekday therapy. Sarah Hazel's one hour therapy should not be a big deal but it's just one more place to be. One more reminder that our "normal" is a little off the beaten path.

But then in all of the chaos that gets me down, little rays of sunshine shine down. God has not forgotten us. Things that seem so silly and simple for most, are great achievements in our home.

Little things like a green bean. Yes, a green bean. It's the texture and taste that Cameron hates the most. He does not even like the feel of them on his sensitive little fingertips.

Yet a miraculous thing happened the other day at Birth to Three. He ate ONE green bean. When your child has behavioral feeding issues, one green bean is a big deal. It's celebratory.

Then again on Tuesday during feeding therapy at home, it happened again. This time THREE green beans. They were chewed and swallowed.

When your child is in a state of progress and regressions all at the same time, you learn to celebrate those milestones even if it takes another 6 months for them to reappear.

Some days the clouds are heavy and gray. But on other days, the sun's rays are beautifully bright. Just like my boy.

Wordless Wednesday

SPD Blogger Network feature and an update on the sickness in our house

A post I wrote on here a few months back, Finding the Right Support, was featured yesterday at the SPD Blogger Network. I meant to post about this yesterday but our house has been crazy with Sarah Hazel being sick so I never got a chance to get on here to share. If you have not read it yet, be sure to head over to the SPD Blogger Network to check it out!


And a quick update....
Sarah Hazel started running a high fever and having breathing issues Sunday evening. She had been struggling with her breathing for a few days but I honestly thought it was just her spring time allergies acting up. Once the fever started though, we could not get it to come down. Around midnight it got up to 105.3 so I went ahead and drove her to the ER where we ended up staying all night. They did all of the usual tests but everything came back negative so we are just operating under the assumption that she caught a very nasty virus. She is still feeling rough today, almost 48 hours since the fever started. The fever is coming and going and she is much more alert so hopefully she is on the mend. Earlier this morning, Cameron had some really bad tummy issues that resulted in a diaper blow out and big welts all over his bottom. He has also started coughing and has a runny nose. I have no idea if it is the same virus or something different but whatever it is, I hope John and I do not catch it. We don't have time to be sick!

More than terrible twos?

Lately, Cameron has become such a mess. I don't know if it's terrible twos or part of his possible Autism diagnosis, but the kid has become a real handful for me to care for. He is still sweet and cuddly and loves to sit on his mama's lap but he is also moody and extremely rough. He has always been very strong for his size and age yet he seems completely unaware of his own strength. Lately he has become frustrated with lack of communication skills. He becomes so frustrated that he collapses and flails his body all over the floor. He throws things....hard. He hits. He kicks. There are times that his fits are so physically rough that I can barely control his body. I do everything I can to soothe him by using deep pressure and the Beckman Oral Motor Massage Technique. Sometimes it works, sometimes it doesn't. I fear that if we do not find a way to help him with self control, that he will un-purposely hurt himself or someone else. And if that happens, other children will become afraid of him. Parents will gossip about the situation even though they know nothing of how hard we try to help him. We will become even more alienated.

If you are the parent of a child with any sort of ASD or any other neurological disorder that affects understanding, please offer your advice. He does not understand the typical forms of discipline and I am out of ideas.

Five Years...

Enough

I constantly have this fear that I do not give enough attention to Sarah Hazel. We are together all of the time, but how much of that time is just one on one? Sure there are all of the times that Cameron is napping, but it is not very often that I get to take her out of the house to participate in big girl activities. Whenever the opportunity arises we (mommy and daddy) make every effort possible to make sure we give her the special time she needs. Even with these moments peppered in here and there, I still worry that it's not enough. I spend a LOT of time in therapy with Cameron which in her eyes, appears to be playtime.

I wonder when the day will come that he feels like the only alone time I have with him is during therapy? Then what?


These pictures are from our Sunday School Easter egg hunt. We decided to only take Sarah Hazel because Cameron could care less about hunting Easter eggs and she was overdue for some mommy-daddy time.

We've hit the picture card jackpot!

Last week I wrote about our new journey into the world of AAC. Since that post, I have numerous people write to me to tell me that they would love to help me find the cards that we need for picture communication. THANK YOU! Yesterday, I received a Tweet from Special Happens telling me about a website called Mrs. Riley . This website is full of 1000's of pictures and symbols perfect for picture cards. It has a special program called Page Builder that allows you to drag and drop your pictures into the template size of your choice, then save them for printing. There is even the option to upload your own photos for cards. I was able to find all of the cards I need, complete with white backgrounds, words, and all at the proper size!

Mrs. Riley does charge a small fee, but if you are looking for picture cards, it is well worth it.  You can sign up for a free 24 hour trial however, in honor of Autism Awareness Month, they are offering a one month FREE membership with code AWARE2011. Yes, free!

The Page Builder Program at Mrs. Riley.com. It is very user friendly!

Lots of food cards!

Cameron checking out his freshly laminated cards printed from Mrs Riley.com

New Do

Cats Have Birthdays Too