I just finished my cousins dad's photo album. I used my new digital program called "My Memories Suite".

Here are some things about me....

Here are some things about me….


1.) I was married at 19, divorced at 21.

2.) I went to Winnapeg, Canada with the church youth group when I was 16.

3.) I hated going to school.

4.) I read backwards…so I have to think backwards in order to get right.

5.) I collect books.

6.) I love castles.

7.) I can't be around a lot of extra noise…it puts me over the top.

8.) I use to collect pigs. Went to the SPCA to get a pot belly pig but they were too ugly…brought home a German Shepard puppy instead.

9.) I would love to live on a farm.

10.) I have only flown once on a big plane and it wasn't even that big. (Delta).

11.) Have flown in a 4 sitter plane.

12.) I have no desire to live in a snowy town.

13.) I have seen Bon Jovi, Skid Row, George Staight in concert. I also seen a few others but can't remember who, mostly rock bands from the 80's.

14.) I am allergic to all small furry creatures…rats, cats, hamsters…and I can tell when I walk into people's house that they have one of them living with them.

15) My parents bought me a horse when I was 2. I didn't have it very long.

16) I love peppermint….mostly in my coffee. Starbuck's peppermint mocha drinks are the best.

17.) I throw out food the day of the expiration date.

18.) I use to just drink Crystal Milk…no other brand.

19.) I believe that God has a plan for everyone.

20.) I believe God gives us free will and it's our free will to make the choices we make, whether good or bad.

21.) I have a hard time going to church because I get all teary eyed once the service starts…I have no idea…so if anyone has any thoughts to this…I am open to hear them.

22.) I love watching & listening to Sean Hannity…and I am thrilled to not have to look at Alan Combs anymore….too scary!

What is Frontal Lobe Syndrome....?

I have been trying to research Frontal lobe Syndrome...and well there isn't much information on it. But what I have found is it is pretty interesting and it has helped me understand Andy a lot better.

I found this on: http://www.chiroweb.com/mpacms/dc/article.php?id=40324. I cut and pasted the info I thought relates to Andy the most. If interested, please check the website for the full article.

Frontal Lobe Syndrome

By Michael McHugh


The frontal lobe syndrome patient may demonstrate an attention deficit. The patient may appear slow, uninterested, may lack spontaneity, may be easily distracted by irrelevant environmental stimuli, and may be unable to sustain attention. The patient's disinterest and easy distractibility may contribute to an apparent poor memory. The frontal lobe syndrome patient's memory is normal, but absentmindedness may lead to the appearance of a memory deficit as the patient literally "forgets to remember" and has the inability to focus attention long enough to form the rudiments of memory. These patients may fill in memory gaps with confabulation, or the elaboration of imaginary facts and experiences to fill in their gaps of knowledge or memory.

These patients may also engage in concrete thinking, which is an impairment of abstract thought. This trend may be identified during a basic mental status evaluation by the patient's inability to properly interpret proverbs.2,4 Closely linked to concrete thinking is the demonstration of "utilization behavior" in which the patient has the tendency to manually grasp and use objects presented within reach.

Perseveration is common in frontal lobe syndrome patients and is the tendency to maintain a previously established motor pattern without modifying the activity according to the demands of the changing environment because of an inability to shift from one line of thinking to another. When faced with a series of different motor tasks, the patient may end up performing one component of the series of tasks over and over again and may demonstrate great difficulty, or an inability to change motor patterns. Perseveration is one of the reasons for poor job performance in the frontal lobe syndrome patient.

These patients may demonstrate a diminution of spontaneous activity, a lack of drive, an inability to plan ahead, a lack of concern, and possible bouts of restlessness and aimless, uncoordinated behavior. These findings may also contribute to poor job performance and family relations. Lastly, the frontal lobe syndrome patient may demonstrate a disturbance of affect ranging from complete apathy to disinhibition depending upon the location of the lesion. A lesion to the dorsolateral aspect of the prefrontal region may produce apathy, emotional blunting, and an in
difference to the surrounding world. Their apathy may be noted during examination and may extend toward work and family. These patients may become incontinent, not because of a lesion affecting bladder function, but because of a disregard for their surroundings and the consequences of their actions. Conversely, a patient with a lesion to the orbital region of the prefrontal lobe, or the underside, may exhibit disinhibition, a failure to appreciate the consequences of one's actions, and euphoria with a tendency to jocularity. These patients may exhibit moria (childish excitement), joking and pathological punning, sexual indiscretions, and exhibitionism.

Neurologist update- Frontal Lobe Epilepsy

I must say that I am very thankful for computers and websites....there is so much more information on there that one can learn from. It is so much easier to learn from the web than spending a ton of time in the doctor's office.

I also must say to those who have special needs kids...get a second opinion if you have any doubts or concerns that are not being addressed by your regular doctor. I say this because Andy was on the same seizure meds for 7 years and nothing else was done about to see if the meds were working. We have been dealing with Autistic like symptoms for many years and haven't had the support we needed to deal with the issues because he has cerebral palsy.

Remembering back when Andy was 4 months old in the hospital getting his shunt re-vised after his shunt infection....

We were told that cerebral palsy is an all around catch all diagnosis and not to focus on the "Cerebral palsy" part. The "CP" part really doesn't mean anything. To look at Andy after his shunt was placed you would not think anything happened to him. He looked like a perfect little baby. His eyes were wide open. He was able to move his arms and legs. The neuro-surgeon told us...he didn't have CP but he might have problems in school...he'll probably have a hard time in math and science.

Bruce and I still talk about that doctor and wonder why he thought that. A few weeks after that we changed medical insurance and our new neurologist told us that Andy would start walking around age 2.

At age 2...a few things happened...The neurologist put him on Trileptal as a preventive thing...He had abnormal spikes in his EEG. The abnormal spikes could trig a seizure at anytime. So, we agreed to the medicine. He had just learned to sit up....he learned to roll everywhere and wouldn't try to sit up because he was on the go all the time. He also at some point started shaking his head back and forth from side to side...like he was shaking his head no all the time. This is called stimming. I remember Andy's behaviors getting harder and harder...he also started waking up at night...many days he would be up all night long. We tried sleeping medicines but they weren't working. We were told it was behavioral issues and he wanted to be in control. We were letting him win when one of us would sleep with him or he slept with us. We always felt there was a reason he was waking up. We did a 24hr EEG in the hospital...which showed the same abnormal spikes. The neurologist didn't do anything about it....just kept him on Trileptal.

It is now 7 years later....Bruce has been sleeping in the same room as Andy since Luke's been born. (He will be 5 in June.). We have major Autistic like symptoms going on and still have no help or direct on how to deal with them.

Until today....!!! Our new neurologist said Andy's EEG is severely abnormal with spikes that it is worst than the cases he described in his book. (Autism and it's Medical Management: A Guide for Parents and Professional by Dr. Michael Chez.) Yikes...how can this be. He said the Trileptal can actually make the abnormal spikes worst. And his behavior could be the direct result of the Frontal Lobe Epilepsy.

So with this Frontal Lobe Epilepsy comes the Frontal Lobe Syndrome. Just when I thought I have heard it all...(ok, maybe not...however I haven't ran into FLS before.)

All the Autistic traits Andy has....may come from this Frontal Lobe Epilepsy and Syndrome.

We are starting him on new medicines and taking him off Trileptal. It will take 4 weeks to reduce the Trileptal...so hopefully within a few weeks we will see improvements.

Oh, all the sleeping issues we had with him is because of this. His lack of attention in the class room is not ADD...it is because of the abnormal spikes. Oh, the lack of potty training, the lack of memory is all directly related. Hopefully the medicine will reduce a lot of his issues. In the doctors book...he stated that he has seen the kids improve up to 70% in behavior and in speech. We are praying to see some improvement...maybe not the full 70% because Andy's EEG is worst than those of Autistic kids. So, only time will tell.

Family update

Here's a few family member updates:

Bruce's family update:

On Wednesday night, Robert (Bruce's Dad) went to the hospital for heart attack symptoms. We found out yesterday he has to have a triple by-pass. The surgery is scheduled tomorrow morning.

On Thursday, we found out that Bill (Bruce's Step-Dad) had a stroke. It isn't looking very good. He is sleeping 90% of the time and is not eating much. The doctors say he might not recover. He can not use his left side at all. Bobbie (Bruce's Mom) and Bill live in Idaho.

It's a bit weird to have both Dad and step-dad in the hospital at once.

My family update:

This weekend I found out my Uncle Randy is in hospital with seizures. He also lost some of his vision and the doctors don't really know what is causing them. They do think he might have had a stroke in his eye which is not showing up on the CT. I have done some research on seizures and vision and there is a type of seizure called Occipital Lope Epilepsy. Hopefully we will know more in the next few days.

I have another Uncle in Florida that is going through chemo treatments. He has been in and out of the hospital for a number of things.

The boys are doing really well.

Lucas started speech therapy again. He is thrilled to go back. The evaluation was done by using the Preschool Language Scale (PLS-3). He is extremely high auditory comprehension with moderately delayed expressive communication skills.

Luke's age = 4 yrs 7 mos.
Expressive communication = 3 yrs 5 mos.
Auditory comprehension = 5 yrs 8 mos.

Andy will be off track in March. It doesn't seem like I will be having a meeting with the school district regarding placement this month. We do have a meeting with transportation on March 4th. I am trying to get the whole team together on this day to talk about the plan. We'll see what happens...if anything.

We are shopping for a German Shepard. We think we found one we like. I will post photos if we bring him home. Hopefully Charlie our cockapoo will like him.

Well that's it for now. I hope everyone reading this is doing okay.

What is PDD-NOS?

Last week, Andy was diagnosed with PDD-NOS from a new neurologist. I have been doing some more research on PDD-NOS.

I found this on www.autismspeaks.org website:

Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, for short, is a condition on the spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. That can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli.

Those with PDD-NOS behave like those with classic autism in many ways. First, they are all different (meaning one person with PDD-NOS doesn't act exactly like another; the same holds true for classic autism). When interacting with others, they may appear unemotional or unable to speak, they could have trouble holding eye contact, or they may have trouble transitioning quickly from one activity to the next.

Those with PDD-NOS are different from others on the spectrum in one specific way: While they may exhibit some symptoms of those conditions, they don't fit the bill closely enough to fully satisfy all criteria set by the experts. Perhaps they started having difficulties at a much later age than others on the spectrum. (According to the National Dissemination Center for Children with Disabilities, they are often diagnosed between the ages of 3 and 4 years old.) Or they may have the same challenges — for example, they may be oversensitive to their surroundings — but not to the extreme that others on the spectrum do.

Consequently, those with PDD-NOS are sometimes thought to have a "milder" form of autism, though this may not be technically true. One symptom may be minor, while another may be worse.

Now where does Andy fit in to all this: My opinion is this: I think when he was born the first brain injury was the lack of oxygen at birth. The second brain injury was the subdrual hematoma (otherwise know as "bleed on brain" due to the over use of the vacuum. The third injury was the hydrocephalus that went unnoticed for 6 weeks...allowing the 3rd & 4th ventricles to enlarge. (Therefore, requiring the VP Shunt). So, because there were 3 insults to his little baby head all before he was 2 months old...over time this has now caused him to display Autistic Traits/PDD-NOS.

By doing the intensive physical therapy at Movement Discoveries (5 days a week for 3 weeks) 3 years in a row...Andy was able to over come most of the low tone and build enough strength & muscle to walk independently without a walker. Since his last trip in June 2007 he has not used the wheelchair. He has walked through the zoo and many other long distance trips. (He does stop to take breaks once in awhile but he keeps on going.) Oh I forgot to mention, the ankle surgery he had last year also helped him from having his foot turned in. (He had a club-footed due to the cerebral palsy.) Correcting his foot helped him with his balance.

So where does the PDD-NOS/Autistic traits come in: Here are some of the things he does everyday. (I will add more later.)

1.) Watches Barney videos every minute he is at home from sun up to sun down. He has learned to fastward and rewind the tapes. So, now if there is a sentence or a word on the tape he is watching, he will stop right that word. (for instance: The sentence on the video might be, "Barney, I love you." He will rewind to "Love" and stop at "You" and rewind over and over at "Love" "You. Boy, if you are in the same room with him you will go crazy listening to "Love you", "Love you" over and over again.

2.)He shakes his head side to side. Very fast. (Try doing this yourself...you might not be able to do.). For many years, the school district has told me...he does this because he has CVI...(Cortical Vision Impairment). However, the eye doctor said if he did have CVI, it's so mild and it would not cause him to shake his head the way he does. She said it known as "stimming".

He also flaps his hands when he is excited.

3.) He is non verbal. I understand that many kids with cerebral palsy are non verbal. However, the neurologist and the neuro-surgeon do not see any where on his MRI's that the speech area of his brain was damaged. When Andy was able 18 months he was starting to say a few words...like Mom, Dad, Shoe, More and Home. At the time he was also learning to use ASL/SEE (Exact English) sign language. So, he would sign and say those words. Well, he stopped saying them. He just uses ASL now. However, if he gets really really excited he might be able to say a word...He really tries hard to say words...His latest word is Papa and I have heard him say, " Poo poo". But if I hear a word today I may not hear the word again....like mom, home and more...I haven't heard in years.

4.) So, he knows about 200 words in ASL....so if he wants something....like a taco from taco bell. He will sign it to me all day, every moment of my waking day...if I don't run out to get him a taco from taco bell. He is very strong willed and very persistent. (Most days, it's very maddening.). This also happens if he wants my family members to come over. We try to have a family day where family can come over on Sunday's to have dinner. Well, if those Sundays come and go and family doesn't come over....Boy, we are in for a very long day sometimes a very long week. He will sign the whole family to us every time we look at him. He will not (can not) understand that some Sunday family is busy or we are busy. So changing the routine is a very bad thing in our house.

Andy tries to make routines and if we don't make it a routine...we are in so much trouble with him.

5.) Andy will only eat: tacos (he likes taco bell but he will eat tacos that I make him.) hamburgers from McDonald's, he will eat ham and cheese sandwiches (mostly at school because he only wants tacos at home.) I can make him a fruit smoothie once a day (to try to get some fruit in him) and he now likes spinach raviolis and salad. However, a major problem with him is if he asked for a taco first....and I say no because it's 6 in the morning...He may eat what I make him then after he is done he will immediately ask for a stink' taco.

6.) He has no sense of fear and he has a very high pain tolerance. So in the past we have found him climbing out the second story window after he pushed the window screen off in order to get to Nene's car. (One of his most favorite things is Nene's black car.)Luckily, my mom thought to run upstairs to check to see if he went up here after we all realized he was missing. He has also gone out the front room window after pushing the window screen...Bruce found him out in the street by my van. We have to watch him all the time. He is always running out the front door or the garage door. Now we have an alarm that goes off when the windows or doors open. We just need to use to more often.

7.) Nene's car....he loves it so much that he wants her to come over just for the car. He just wants to be outside touching it.

8.) Doesn't play with toys. He has the physical ability to do so, he just doesn't. Never has.

9.) I can say Andy loves being with people. He loves the idea of them coming over and us going to see them...but once he sees them....that excitement is over within 5 minutes. He is ready to go home or he will start asking when they are going home. It's like he is preparing himself for the departure. It's not a good thing if we or they are not ready to go home. He then makes it very difficult on us and them.

Okay, If you are still reading this...thank you. It's a lot for one reading but I had a few moments to write.

Another personal opinion of mine is I really think even though Andy had a rough start at birth he has over come a lot of his injury/cerebral pasly. I think he is very strong willed and very determined little guy and if he didn't have that I really don't think he would be walking and doing as well as he has been.

Now I need to find him the right therapy to over come or at least help him to over come all or most of his autistic traits.

Until I have another moment.....