Time Tracker

Here's a really cool idea that mom has used to help me with my big sister not being home.

In preschool we made a paper chain to count down the days until Christmas. So what mom has done is explain to me that Britt will be home on Christmas Day and we are using it to count down the days until she is home.

(Note, we are a blended family and Benji is VERY attached to his sister. He has a very difficult time dealing with change so when Britt isn't home we have to come up with a way for him to deal with it. This was originally a paper chain to count down the days until Santa comes, but we don't have Santa. - Jesus provides all of our needs, including presents.)

This paper chain has been a really good idea, helping me have something visual to show how much longer it will be.

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Ball pit & Aquadoodle!

Mom and Dad finally put up lights under my 'flying' bed. Now it really looks like it is flying!
Under the bed we hung up my Cars poster and put up the ball pit. I LOVE MY BALL PIT!! Plus mom hung up my Aqua doodle on the wall to help me with my writing. Ms Cookie said writing on the wall like that helps build my 'writing' muscles.
I just wish I felt good enough to enjoy, I am running a fever and my throat is sore. It makes me not want to eat but I have to be careful since I have the hypoglycemia. It worries mom. Yesterday afternoon I was just laying on the couch and not doing anything so she checked me... My sugar was at 79... Which isn't too bad, but in that caution area. It's been between 100-120 aside from the initial eating spike since.
Anyhow! Enjoy the pictures.
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Yay! New Bed! New RED Bed!

So, I have been feeling a little left out in the bed department. (Everybody else has a big bed) Mom and Dad decided to get me a big bed!

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Slowing Overcoming...

So, Benji still has the cough with the flu. He's been fever free since Saturday. Slowly getting better. Couldn't tell he was sick during the day. It's at night that it all catches up with him.

The down side to this is that he missed the last two days of school before fall break and we are out for two weeks. So those of you with sensory kids can understand when I say it's been rough!

Being sick, schedule changing, not able to play outside cause it is raining, etc... is driving him crazy! So glad we found the Sonic collection at Game Stop last night for the PS2. It was only $12. So at least he can focus on playing it and have something to do.

We go to the dentist tomorrow for the regular check up/cleaning. I pray all will be okay there. He is oral defensive. Doesn't really like us messing with his mouth.

Sick Visit

One could be surprised it took as long as it did for Benji to get sick. 2 of his sisters have been sick all week.

Praying he recovers quickly and that we have no complications. He is on tamiflu, so hopefully we will kick this quickly.

Temp 100.2
Blood pressure 90/70
Pulse 110
Weight 43.13

Diagnosis: Flu

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Ever changing...

Benji has had a hard time the last two months. Just when he got used to the schedule of himself going to school, mom started college. To help us, mom and dad, to handle it we kept chanting it takes 2 weeks for adjustment to change. Just 2 weeks!

Well... It has been 3 weeks.

At school Benji is doing well. 95% of his days are good. He is learning how to be a great friend and he is learning pre-kindergarten skills too. Unfortunately, there are those occasional "stubborn" days. These days are unique because he might have a bad moment and then recover, only for when it's pick up time and he is walking to the truck he starts crying because he didn't get a "treat". But again, we talk about it and he recovers. Most of the time.

At home... things are different. Benji has been used to mom being there 24 hours a day 7 days a week with an occasional visit from Nana to watch him. With mom being at school three days a week, this has changed. Benji doesn't know how to handle it. We have made sure to spend quality time with him (and the sibs). He is still having "emotional" episodes. At first glance these tantrums, or mini-meltdowns look to be just a tantrum. The difference is that once he gets it out there is only one person he wants and he wants to be cuddled and loved on.

The biggest concern with this is that one minute everything is fine and then it takes only one little thing to set him off. His tolerance has dropped, I don't dare take him to the store right now. We can pick out a cartoon to watch, get not even 5 minutes into and he start crying because he wanted to watch something else, even though he picked it out. Frustration is building within him it looks like.

We are praying we get into a groove again. Even if there are different behaviors, it will be good to have things consistent.

Health Care... Mom's View

As most moms of a child with a disability, I pray for the day when we can all access health care that will help our kids. It grieves me that a dear friend of mine has to choose what their medical care based on how much it costs. It shouldn't be that way.

I agree with a lot of people in that there needs to be some serious health care reform. I disagree with the hyped up media opinion that it needs to be a government sponsored or government ran health care.

My reasoning is not because of the costs and its not because of the threat of socialism, although those are good reasons. My reason is because of simply, look at everything else the government is in charge of...

Remember the trumped up charges on everyday equipment that the government was paying? $300 for a hammer?

The stimulus payout? Have you noticed job security? We haven't. Prices of groceries are still high. Gas is still high.

My biggest beef against the government running health care though?

The fact that the FDA does not have the time to protect us from toxic chemicals in our food.

I am sure you wonder what I am talking about... I must be one of those tree huggers that only eats all natural, organic, non-processed food. You would be wrong. We do try to avoid over-processed food, but I'm not June Cleaver. I don't work in the kitchen all day.

Let me share with you. Benji has ketotic hypoglycemia. His blood sugar will bottom out if we aren't careful about what he eats or drinks. With this he needs to stay away from artificial sweeteners, including High Fructose Corn Syrup. This was HIGHLY recommended by his endocrinologist. So... the last year or two I have been steering away from HFCS and saccharin and sucrose, etc... You can imagine the excitement when we found bread that touted the label HFCS free, all natural a month ago. Plus it was on sale.

There was two ingredients in that bread that didn't look familiar, DATEM and azodicarbonamide. But I figured for the label to say it was natural it would be. Plus I was already tired that day so we got it.

The next day we had pb&j's for lunch and the bread was absolutely delicious. But about 30 minutes after lunch we noticed Benji was acting very hyper and out of control. This is a typical red 40 reaction with him. I rechecked the bread label because I had made the lemonade and the jelly. I knew they didn't have anything bad in it. Those two chemicals popped out at me but I shrugged it off.

The following day we had the same lunch. Benji was still acting as if he was over stimulated but I figured he was getting tired, we had played outside that morning. This time after lunch to add to the hyper activity, he got very emotional. Fussy, hyper and demanding... more like an overstimulated toddler than a 4 yo. So, I decided to look up these two chemicals.

DATEM ~ Diacetyl Tartaric (Acid) Ester of Monoglyceride it is used as an emulsifier that helps delay the staling of bread.

azodicarbonamide ~or azobisformamide, is an organic chemical, C₂H₄O₂N₄. It is a yellow to orange red, odorless, crystalline powder. It is known as E number E927.

In several articles across the internet it is stated that ADA is banned in Australia, I have not found proof of this. It is also said that in the UK, ADA has a warning label of May cause sensitization by inhalation, meaning it can cause or worsen asthma.

If you read the Azodicarbonamide (CICADS) you will see that it mentions in the UK it is no longer permitted to be used in food.
"Azodicarbonamide has in the past been used in the United Kingdom
and Eire (but not other European Union member states) as a flour
improver in the bread-making industry, but this use is no longer
permitted. It is not known how common this practice is worldwide.
Azodicarbonamide is not used in other consumer products."


According to the article in Wikipedia, this chemical can cause similar reactions that food dyes does. Not to mention that this chemical is used to make things such as shoes, window gaskets, exercise mats, etc.

An interesting article Azodicarbonamide: Another reason to avoid most bread

I highly encourage you to read the last article...

All of this is said to get you to think. Our government allows the usage of known toxic chemicals in food. These chemicals cause some of the health issues going on. Benji's sensory integration and focusing abilities highly depend on what he has eaten. Give the kid something with food coloring, especially red 40, and he's a super bounce ball.

But we want this same government to run our health care?

Put limits on malpractice lawsuits. Have it so that how much the doctors change people with insurance vs people without be the same, and lower it to a reasonable price. It shouldn't cost $150-$200 for a well checkup. Enforce the laws that are there. Prevent prescription fraud by having to see a photo ID of the patient or their insurance card. Prosecute the doctor for helping the patient commit fraud. Require screening of newborns that includes the pulse-ox to help catch medical conditions quicker.

I am concerned if we convert to the Health Care program that is being pushed right now. It would mean that when my son has to have his aortic valve repaired that he might not be able to if the government doesn't want to okay it. Or if he gets that surgery if he needs another later on down the road he's already met is lifetime limit. But the biggest thing? If this HealthCare program is so good? Then President Obama needs to sign himself up on it instead of taking the existing care he and his family get now. All of the politicians that are saying this is the way to go, should be more than willing to drop the insurance coverage they have for being a politician in Washington and take the same healthcare they are pushing on us.

Fix the problem, don't create a new one.

Leaving with a little tidbit. Benji's older sister has asthma. The medication she has to have to prevent her from having asthma attacks is not covered by medicaid. We are fortunate that our private insurance covers all but $25. What will happen if the Healthcare reform bill is passed? Will they say "since she's not been hospitalized, we don't need to cover the medication."?

Tuckered Out

This is what happens when you start your day early and you just keep going. LOL

Dr. Teal's Epsom Salt with Lavender

While I was at the store the other day I noticed a different brand of Epsom Salt than what I normally get. In fact there where a couple of different types of Dr. Teal's brand. I picked up the lavender variety.

Let me say that the aroma is wonderful! I have some lavender growing in our yard and this smells just like it.

We have seen the difference plain epsom salt makes in calming Benji down after a stressful day and it also helps establish a routine. (It has been suggested that 15 minutes in an epsom salt bath is all it takes.)

So we are using the Dr. Teals Sleep epsom salt with lavender, Sleep. Tonight is the first use so we will update soon. I pray the lavender just adds to the relaxation and calming.

Tags: epsom salt, lavender, product review

School is underway...

We have survived the first 3 weeks of school! YAY!!

School started for Benji on August 3rd. He goes to school for ½ day, 4 days a week. His school is a developmental preschool that is based on a reverse inclusion model. (It’s for special needs or developmentally delayed children and they bring in typically developing peers) I love what it does for Benji.

Benji started in his preschool just after his 3rd birthday, so he’s been in for a little over a year. He has responded so well! His speech has vastly improved, he tolerates change better, he is learning how to control his sensory issues too. Now if we can just get him to write…

Back to the last three weeks.

Week one, Benji did really good. He was complaining that he wasn’t in the same classroom from last year, but we talked about it and explained that you change classes as you get older and smarter. He already knew the teachers because pre-3 and pre-4 work together. This week the peers weren’t there.

Week two, EVERYBODY is at school this week. The week went very well at school. At home Benji was very emotional and didn’t want to go to school until we got there. Wednesday and Thursday he didn’t want to get up and get going. He had a little bit of a problem listening on Thursday, his teacher had to redirect him. After school we had to go to the allergy doctor.

This past week, Benji has been very sleepy and whiney in the mornings. We have finally gotten him convinced that his class is fun. Thinking that we are getting into allergy season, he has runny nose and congestion when he wakes up. He looks tired. On Wednesday he wasn’t wanting to do circle time. Got him some medicine and Thursday was a great day.

I am pretty sure that his behavior at school is much better than home. His teachers have a strict schedule and the kids have to go by it. At home we are seeing little blow ups until one of the siblings does something that offends him and then there is no stopping the meltdown… Praise God we were at home when they happened.

After PT this past Tuesday he was fatigued… his teacher said it only lasted about a half hour and then he rebounded.

Gotta work on morning exercises more. We did them the first week daily and then slacked off. I think they help him a lot. Jumping on the mini-tramp, situps on the exercise ball, lifting the weighted ball, sling swing…

Next week will bring more changes for the little man since mom is going to school herself. Praying the adjustment goes smoothly.

Rock for Autism: A Mom's Passion turns into a Great Musical Event

It was through a friend of a friend that I first heard of Windy Dotson. In the social networks we seemed to have many friends in common. Then, I was told about the Rock for Autism concert to be held at the Dickson County Housing Authority gymnasium on September 5th to support the group from the Sisterhood of Unbiological Sisters (SOUS) in their drive for donations for Autism Speaks. That was when I had to know more.Read More

2009 Walk Now For Autism

As many of you know, we support Autism research. We are affected by autism in the regards that Benji has Sensory Integration Disorder and has signs of other stereotypical autistic behaviors.

We encourage you in your support of Autism research to donate to Autism Speaks on behalf of Benji. We are walking with Team Anakin.

If you know others please share the link to help support this cause.

Been Awhile

Wow... it has been a long time since I have updated here.

We are coming towards the end of our Summer Break. We have a little over a week to go and then everybody goes back to school on August 3.

Benji is moving up to the 4 year old class room in the developmental preschool. He has made much improvement in all areas, although he is still considered globally delayed.

In June we under went standard developmental testing along with autism screening. The doctor believes that Benji is more at risk for ADHD combined type than anything else. As the primary caregiver and mother of Benji, I disagree. The doctor believes it's the ADHD because Benji's attention span lasts about 20 minutes. Also because Benji has a hard time adjusting to schedule change. And when Benji is over-sensitized he gets hyper and has meltdowns.

Benji has sensory integration disorder. He is very tactile defensive. He is also sensory seeking. Examples... eating pancakes and Benji gets syrup on his hands, he has to get it washed off as soon as possible. Benji enjoys 'crashing' into the wall, or falling. We handle his sensory stuff by doing exercises. He jumps on the mini-tramp, swings in the sling swing, swims in the pool, body massage, bouncy ball, and stretching exercises. When doing things that will set off his tactile defensiveness we keep it to a minimum and at meals keep a damp wash cloth handy.

Benji also has food intolerances. His is VERY lactose intolerant tot he point we avoid lactose, casein, whey and anything that hints of having to do with cow's milk. Benji can not tolerate food dyes, specifically red 40 but others are suspected, we just discovered another chemical that sets him off too. (azodicarbonamide) His reaction is extreme hyperactivity and moodiness.

It has been known for quite some time that food intolerances can mimic ADHD. So why, when a child has known food intolerances are they still quick to point to ADHD?

I am disheartened right now when it comes to doctors listening to parents. I know my child. I also know that there is something going on. For now his labels are global developmental delay ~ NOS ... The Sensory Integration is I suppose an informal diagnosis now.

Our other concern with Benji right now is that we notice while he is sleeping there is a lot of restlessness. Normally that wouldn't bother me because I know little ones can be active in their sleep. But that combined with moments throughout the day where he just stares off has me concerned. Working on getting in to the doc... again. Praying the suspicion is wrong.

Progess

I am so happy. Benji is nearly reached a HUGE milestone. He has been potty training for over two years now, and while I know we will have set backs... He is doing GREAT!!! Finally.

We have had very few daytime accidents in the last month. He is going to the bathroom regularly and that includes the BMs. At night he's doing good. Doesn't stay dry every night but he is doing better than big brother.

I believe part of what has helped in potty training is the potty scotty training pants. A friend of ours had ordered a pair for her child and they were the wrong size, so she offered them to us to try. The first week, Benji still had a couple accidents but was a lot more aware that he needed to go potty. He has gotten to the point now where we use the potty scotty for bed time and he is in just regular underwear during the day.

I am absolutely thrilled!

I do need to say that Benji is a special needs child. He is developmentally delayed. Potty Training has been a very difficult road for us. For him his potty routine is the first thing that gets thrown out of wack with major schedule changes. (school break, discharge from therapy, etc)

Wordless Wednesday

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It's been 3 weeks

We went to the allergy doctor three weeks ago yesterday. They did the testing, no food allergies showed up but he told us that we should not change eating habits with Benji's reactions. He thinks the food stuff is either allergy we can't test for (red 40) or an enzyme issue.

However we also checked environmental allergies. Benji is allergic to cats, dogs, horses, dustmites, mold/mildew, and a few others like tree pollen and grass pollen. His hots actually are higher than his sister's that has asthma.

Dr. Norvell put Benji on a trial of Veramyst nose spray. It cleared up the sinus junk that was going on then and in 2 weeks even the cough was gone. Problem is that when we went to get the prescription filled our co-pay was $75. That SHOCKED me. We have good insurance and it was that high. Had to call the dr's office to see if there was a generic so we are now taking the generic of Flonase.

It seems to work just as well.

The only difference in Benji's behaviors we are seeing is he is more in a "wants it his way" mood. That I contribute to being the end of the school year. It affects him too. :o)

Better get going... he's done eating and wanting to swing now.

Finally, a little common sense

I was browsing Facebook earlier and saw a link that one of my FB friends posted.

My Child Has Autism and I Vaccinate (http://www.blogher.com/my-child-has-autism-and-i-vaccinate)

I appreciate this article. Not because I dismiss the vaccination theory. I appreciate it because whether or not vaccinations with thermosil cause autism or not, my son's symptoms were not from his vaccinations.

We had genetics tell us that because nothing showed up on the select testing they did that it had to have been the vaccinations.

We have had pediatrician tell us there is nothing wrong with Benji when there are reports from several therapists saying otherwise.

We know we have a quirky kid. A quirky kid that we love. And we also know that there is something there. To have a doctor tell you that they would diagnose him with Asperger Syndrome but can't because his speech was significantly delayed confirms your belief that there is something going on. It's not that I want my child to be sick or to be labeled. But I know there is something going on.

We know he has the sensory integration disorder. He is tactile and oral defensive while sensory seeking with deep pressure. I praise the Lord that we are able to handle most of it by thinking ahead. For his deep pressure we have the mini trampoline for him to jump on, an exercise ball he can bounce on and a sling swing to swing in in the house.

For the defensive, it's difficult with the foods. Once he decides he isn't going to eat something, there really is no way around it. Unless you want a meltdown, because it goes beyond a tantrum. His tactile defensiveness we make sure to have a wash cloth or wet wipes around at all times. He HATES being icky, sticky, slimy, etc.

Anyhow... I know Benji's stuff isn't from the vaccinations. His regression started before the 18 month shots. And it escalated when we moved and our schedule changed.

Anyhow... just some thoughts today. I know I am jumbled and rambled... forgive.

Swinging Along

This is a wonderful video for me. When we bought the swing Benji could not sit on it at all. We bought the swing last fall and every once and awhile he would try but more times than not he would fall off.

So here is Benji swinging!

(Benji has hypotonia. Low muscle tone in his core muscles. That is why this is such a big deal!)
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Mom, Can I have some Pop Tarts?

Nature's Path Toaster Pastries

As we started changing Benji's diet to be healthier and not have HFCS or red 40 (food coloring) and to limit all cows milk, we realized that he could no longer have his 'pop tarts'. So, we went to our Kroger and I about danced in the aisle when I found an organic version.

There in about 6 different flavors were organic toaster pastries. I checked the ingredients... No HFCS, no Red 40, it does have whey protein but it is very low on the list and we don't notice the digestive problems we see with milk.

So, we tried the flavors that our Kroger had. There was Blueberry, Strawberry, Cherry Pomegranate, Chocolate, Acai Berry, Apple Cinnamon, and I think one more.

They are a hit! Benji loves them for a quick breakfast on days we don't have time to 'make' breakfast. I love them because I know that it is natural food I am feeding my child instead of all the chemicals in other foods.

The negative? At our Kroger regular price is $3.59 a box. A box has 3 packages. 6 tarts total.

Nature's Path Toaster Pastries

The above link goes to the Amazon Grocery Site where they have many of the available flavors. The boxes are in bulk, and from my figures, it's a better deal than going to Kroger to buy the individual boxes.

To find out more about Nature's Path, I invite you to visit their website www.naturespath.com.

I rate this product at 4 stars. If it were just the taste it would be 5 stars. It's a little pricey at our local store though.

Summer Infant Sure and Secure Extra Tall Walk-Thru Gate

We received this gate, or the older version, when our 5 1/2 year old was born. At the time we were living in a small 2 bedroom house and he made kid #3 that was living with us. This gate was and is a godsend. It took the girls quite a long time to figure out how to open it and it is definitely tall enough to keep the kiddo in.

The gate is 36 inches tall and will fit door ways 28" to 47.5" wide. There are some doorways however that the gate will fit into but is not a good match. This gate has worked wonderfully for us.

We still use the gate, even today. We have it in the doorway between the kitchen and the mudroom/laundry room. In fact, when we moved we lost some of the installation parts and all we had to do was call Summer and they sent us what we needed for free!

It has taken the abuse of 6 kids, 2 dogs and a cat. Which for pet lovers, even our 10 year old cat loves the gate. She can jump over it and get away from the dogs if need be.

Roller Coaster

We been going through a roller coaster (little one) for the last couple of weeks. I was so excited when Benji's pediatrician finally saw what we were talking about with Benji that I lost my mind. Okay, maybe not completely... but I did forget to follow up with the developmental pediatrician.

I found myself a week after the appointments, with no follow ups scheduled. So of course, I had to start emails and phone calls.

Benji goes to the Food Allergist on April 16th. It's in Franklin, but I figure if we can get answers it will be good. It would be great to know if he is outright allergic to things. We know the digestive problems with cows milk. We know the hyperactive reaction to anything with red 40. We avoid high fructose corn syrup due to his hypoglycemia, we also try to limit other sweeteners. I still have pages to fill out for that appointment. (I love paper work, at least I make copies after I feel things out now.)

Finally got the call back yesterday about developmental testing.. It won't be until June 16th. That has it's pluses and minuses.... I am suppose to have his teacher fill out a questionnaire on him close to the test date. We get out of school at the end of May... hopefully it will be good enough.

I believe Benji is about to hit a growth spurt, his moods are erratic and he is sleeping alot more than normal these last couple days. He just got off of antibiotics too... He had strep. Little guy always keeps us busy.

Another Domino

So.. Benji went to physical therapy today. He has made lots of progress. So much so that for him to continue therapy would be almost a waste of time.

I knew this, but his PT also helped with the sensory stuff to a degree.

So.. we are going to go about a month and see how he does without the PT. I can call or email at anytime or even bring him by without a problem. (This is really good because his PT is in charge of him getting his inserts in his shoes for the pronation)

While I am so glad that Benji is making progress, I am having a hard time letting go. He was discharged in January from OT, now PT. This means I will have to work harder with play dates and all.

Looks like I will be the scheduling queen for the summer... and I will HAVE to have back up plans. :o)

The Good, The Bad, The Stimmy! Pt 2

So... the last post was about our visit to Vanderbilt Children's CDC and seeing the developmental pediatrician Friday. This post is about Monday's visit to our regular pediatrician for Benji's well check.

I feel I need to note that at the CDC Friday, Benji was VERY well behaved.

Obstacle #1 Monday.... "I wanna stay home and play Batman."

Obstacle #2 ... "I don't want to go to doctor, I wanna stay home."

These were the first two hints that I was going to have a very enjoyable morning.

Loaded the young master into the Expedition and buckled him in. Hopped in myself and we began the 24 mile trip to the pediatrician's office. (We live in the sticks... to get a doctor with permissions at Vanderbilt, he's the closest.) The trip in was rather uneventful until we got in close the the office... then it starts.

"I wanna go home." "I wanna play batman."

I had forgotten that a few weeks ago they had a lesson week on doctors and dentists. I had forgotten the relief on his face when he accepted that Dr. Cooper wasn't that kind of doctor... you know, the kind that give SHOTS.

We get in and we check in. Uneventful. Then nurse Tammy comes and gets another child and it starts...

"I dun wan shot momma."

Of course, I came up blank and couldn't remember if any were due. (I am one of those mom's that don't believe it was the vaccinations that caused Benji's problems... with everything else going on, I think it was always there.) So I told him he probably didn't need any today. I had even resolved it in my mind that we wouldn't get them then, if he needed them we would come back another day.

So that was the waiting room.

Then they call us back. It was a different nurse that we didn't know, but Benji seemed okay at first. It was time for a hearing test. I laughed inside as I realized what he was doing. See for the hearing test he had to wear the headphones and have the button to push in his hand. He would hear the sound and push the button but then keep pushing the button like he was flying an airplane or a fighter jet. It was cute. The nurse didn't appreciate it.

Next was height and weight. The young Benjamin is 39 pounds and 41 inches tall.

Next was vision. This was fun. He couldn't stand still... He was wiggling everywhere. He was still able to read the chart though. I finally got him to stand at the right spot (still wiggling) and he told the nurse every single shape on the next to the last line. And the first 4 on the last line.

Once we got into the exam room we did the blood pressure which was 94/60 on the right arm. (Arm is important since he had the surgery on his aorta.) We went over his history and concerns and then waited for the doctor.

While we were waiting, we had to strip down to undies. He wasn't too crazy about that. It was then that he decided to jump... off the exam table to the floor. I caught him just as the doctor and a fellow came in. Benji was wild. Got him back on the exam table and he grabbed the 'flashlight' from Dr. He started examining himself... It was funny until he dropped the light.

Dr was asking about the concerns with Benji's eating (lactose/casein intolerance, red 40 sensitivity, MSG sensitivity/intolerance, the hypoglycemia) his pottying (even though I try to keep him in undies we do have a lot of accidents.) and then Dr brought up about the CDC and such. I explained how that went.

Through the conversation Benji would interject random things about Batman and shots and siblings, and school, and.... you get the picture. He was also being wiggly and giggly.

When it came time to the exam, I actually had to hold Benji so that Dr could do the exam... Mr Tickles...

Physically Benji is doing great. His height has jumped up to above 95% and his weight is right at 90%. Which is good considering his heart and then the hypoglycemia. He is growing, and thriving.

So... as we were talking and Dr saw this wild thing in his exam room he asked me similar things as Dr. Cooper. And came to pretty much the same conclusion. We may be looking at a 4yo with Asperger Syndrome. This is the first time that Dr has entertained the thought. It may have to do with the existing diagnosis of Sensory Integration Disorder.

So we are waiting for an appointment referral to a food allergist/nutritionist.

All and all the visit was good. Benji has progress. And we are taking steps to narrow down what is going on.

The Good, The Bad, The Stimmy!

So, Benji went to the Child Development Center at Vanderbilt Children's for his suppose to be yearly developmental pediatric visit. His last visit was 18 months ago when he was diagnosed with the Disorder of Childhood and was referred over to Vanderbilt Bill Wilkerson to be checked out for Sensory Integration Disorder which he was then diagnosed with.

So, Dr. Cooper was glad to see us and reviewed Benji's progress with me. Or.. I should say I shared Benji's progress.

• His Speech is almost completely caught up. He still has some articulation to work on and he needs to pronunciate better, but he is a talking machine once he gets going.
• His fine motor skills are nearly on par. It's more of a stubbornness problem than not being able to do something. (i.e. He knows how to hold a pencil/crayon but chooses not to do it right)
• Gross Motor is improving. He still needs to strengthen his core muscles and we still need to work on those ankles.
• He is off the blood pressure meds for his heart. It's will be a year in May!
• While he does have low sugar episodes, we catch them quickly and he recovers fine. Mostly happens when he has been playing all day outside and doesn't want to stop for anything.

Dr. Cooper appreciated my knowledge on what was going on. Which this is a soapbox of mine... Do parents just not pay attention to their kids? I mean really. Benji has some medical issues, so I do the research and I do what I can at home to help him. That's how we realized it was the cow's milk that was causing the colic when he was little. That's how we discovered the sensitivity to red 40. (OH MYwas it wonderful when we got rid of that! The hyper activity disappeared!)

Anyhow.. so Dr. Cooper thinks we should do pretty much the same testing we did last time and see what comes up. His non-official opinion is that Benji is either a quirky 4 year old or we are looking at Asperger Syndrome. This does not surprise me at all.

• Ridgidty ~ Must have schedules. If normal routine changes he gets very non-compliant with anything. It completely disrupts him. (eating, sleeping, pottying, mood, etc)
• OCD type ~ While this isn't as bad as it could be. Benji is very particular about how things are. If he puts something somewhere, it had better be there when he gets back. Things also have to be 'just so'. It's hard to explain... would you like to come over and see one day?
• Obsession ~ for over two years the only thing Benji wanted was Cars. You know Disney Cars? It is still an obsession and he has moved to include Hot Wheels, Wall E, and Transformers with it. They are all mechanical and he loves to "help" work on the car or just to help with tools in general. He is also now obsessed with video games (PS2)
• He is very sensory seeking. The deep pressure type. He loves getting in his sling swing all cozy and swinging. Also jumping on a trampoline. When he is seeking he will throw himself on the ground or against the wall and laugh.
• While exercises have helped he is very tactile defensive. He will play in finger paints now but he doesn't like it and the second he thinks he is done he wants his hands cleaned.
• Can't stand to be sticky, slimy, itchy, etc.

So... that was the visit with Dr. Cooper. We are waiting for the call to get the testing done.

I am Not TIRED

... Says the sleepy boy at 2 in the afternoon while he twirls his hair and sucks his thumb.

Benji is a tired little guy that is wishing his schedule would get back on track.

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IEP and such

Benji's IEP went well... OT discharged him, which didn't surprise me since his fine motor skills are on par. PT kept him because of his core strength and that his sensory seeking behaviors can be a problem. He likes to throw himself down for the deep pressure. This is not new, they are just seeing it more than they used to.

Right now we are on spring break and unfortunately the change in schedule has messed the little guy up. His potty training has slid some. He don't want to use the potty for his BMs, so I put him in pull ups, which causes him to not care if he urinates in his pants. So sensory stuff is fun!

Benji's birthday was March 2nd and he had his party the night before. He was so thrilled with all of his 'CARS' toys it wasn't funny. Made me glad we hit the dollar aisle at Target. Plus I got the walking talking Lightning McQueen for $15 on clearance at Walmart right after Christmas!

Other than that we are just taking things one day at a time.

Getting Behind

I am so sorry I haven't updated in a while. It's been crazy.

For the first time since Benji was born we had to go to the doctor for a sick visit that put him on meds. It was a sinus/ear infection so nothing major. Thank God. The same day big brother was diagnosed with Strep and Scarlatina. This is dangerous for Benji because Strep can go into Rheumatic Fever and affect the heart. (Benji has a bicuspid aortic valve with stenosis already)

So we had that to contend with and lots of other family stuff going on.

Today Benji has his yearly IEP at school (he attends preschool for special needs kids so he gets his socialization and therapy 3 hours a day, 3 days a week.

I am praying that it goes well. I never got the notes and recommendations from the OT he was going too and I don't have anything in writing from the PT that he is still going to. *sigh*

I'll post later to let you know what all goes on. I know that after his birthday he goes up to 4 days a week. (The days are based on age. 3yos go 3 days a week, 4yos go 4 days a week.)

~ Faith

Maybe, just maybe it wasn't the Vacinations...

According to an article in USAtoday, (http://www.usatoday.com/news/health/2009-01-27-corn-syrup_N.htm) High Fructose Corn Syrup contains mercury at least 50% of the time.

WOW!

All this time everybody was just looking at vaccinations being the culprit of mercury poisoning, and we have been feeding it to our kids thinking they would be peachy.

Seriously, this is waking people up. Or I hope it is.

HFCS already contributes to diabetes and obesity (http://www.diabeteshealth.com/read/2008/08/20/4274/the-dangers-of-high-fructose-corn-syrup?section=306). Our bodies to not recognize that HFCS is a sugar and then does not trigger the hormone in our brain that tells us we are full. Thus causing one to over eat or to crave foods that are not good for us.

With this new finding of mercury being in HFCS, I pray that the FDA does in fact demand that something be done.

Our family has already removed as much HFCS out of our diet as possible. (Bread is our hardest thing) We eat as natural a diet as possible. Fruits, Nuts, and Vegetables mostly with limited meat.

In our home we have noticed a difference in behaviors. When there is no violations of HFCS, red 40, and milk for those intolerant our behaviors are much better and the kids can focus on their school work and do better.

What's in your food?

Will you be a voice to get regulations changed?

Shaving Cream Fun

Painting with shaving cream!

Benji had fun this afternoon playing with the shaving cream and food coloring. He has come so far, last year there was no way he would even touch shaving cream or finger paints or things of that nature.

This is a great sensory activity for touch.

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New Food Progress!

Yummy! Benji tried a new food and liked it tonight!

We had an oven omlet with bell peppers, red onion, & turkey with fried taters on the side. (more sauteed than fried) It was delicious but better than that Benji cleaned his plate.

He insisted he did not like it when we put it in front of him, I told him he just had to try one bite. He did and loved it!

YEAH!

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Finger paints

In light of Benji meeting his goals with occupational therapy, we have decided to continue with the OT/Spd exercises at home.

One of the exercises that we have had much success with is finger painting with shaving cream.

You use plain shaving cream(not gel)
Food coloring is optional

Be cautious of clothing, it can stain. So can hands. This works really great if you have a table surface that the shaving cream won't harm. Squirt the shaving cream on your surface and mix in the coloring. To start you can use paint brushes or foam brushes to spread it around and "paint" on craft paper. As your child accepts that you move to using their fingers.

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