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.....