Tuesday, April 21, 2009

A new Diagnosis

PDD-NOS http://www.autismspeaks.org/navigating/pdd_nos.php is the new diagnosis for Cameran. She had her 2 hour testing yesterday that wore her out. Literally.....Baby girl fell asleep sitting up right there in the testing room....Drooling and all....LOL!
They had us fill out tons more paper works on top of what had already been done by us and her teacher. He asked us if we thought she would do okay if we stepped out while he tested her and we thought sure. NO was more like it she jumped up out of that testing chair as soon as we opened that door screaming I go ByeBye. So we ended up having to stay that first fit lasted a good 5 minutes. Took lots of coaxing to get her back into the chair. But she warmed back up once we she figured out we were'nt going anywhere.

He started her out on some little blocks asking her if she could do what he could do. He stacked his and she stacked hers. Then he tried to get her to line them up like he did...nope she wanted to stack them again, he never could get her to do the other ways. He asked for his blocks back and she told him No...Mine! So he just let her have them till he got the next thing ready, once that was out she was more willing to give them up.

This next test was just 2 big flat puzzle pieces that she had to put together correctly. It was a basketball cut in half, it took her awhile but she ended up getting it. He tried a few more and by then she was easily frusterated and wanted nothing to do with those puzzels. She then tried to stand up on top of the table to get to the table to get to the toys that he had put away before the testing started. This led into another fit of "I wants"!

So he quickly moved on to the book of pictures. On each page was 4 different pics he on the first page was a ball, a hamburger, a baby and a bug. He asked her what item you could eat and she just could not concentrate past the picture of the ball. She just kept saying a ball a ball. So he moved on. The next page was a butterfly, a plant, a tree and another bug. He asked her Cameran where is the butterfly and have you know that she pointed straight to the butterfly and said "butterfly" me and Jasons jaw both dropped......scoop us up off the floor would ya! That totally blew us away. So once she did that he flipped back to the ball page and asked her again what do you eat and again she kept saying ball.

The third page was of different animals a horse, a cat and 2 others he said Cameran where is the cat and she pointed to the horse and said Dooooo(for a cow), every animal to her is a Doooo. The next one, he asked if she saw a Giraffe and again she pointed straight to it, we where shocked. The next pages where of cars and such and he would run his finger around the 4 pics asking her over and over which one could fly and she would just copy his moves running her finger around the page. And her little mouth was just a rammbling on and on babbling all kinds of stuff that made no sense at all but it was cute listening to her like she was carrying on a conversation with him. By now she was in a hurry and trying to flip to the next page and with him resisting to move on she had another melt down. So he moved on, he left us for 5-10 minutes to let her cool down before the next part started.

When he returned he had a huge tupperware tote and as soon as he walked in Cami lets out a BIG ewwwwwww and immediately ran over to him to see what he had in the box. He first started with a balloon before he opened the box. He blew it up and she shouted its a ball its a ball I want ball! He didnt tie it instead he said watch this Cami and let it go and it blew all over the room. Her face was hilarious, she looked confused but had a grin on her face. He did it again and she then was starting to get into it chasing it. He then blew it up once more and handed it to her once she had it in her hands he let go of it and it started letting out the air and shrinking. I think it freaked her out a little because she turned and looked at us like whats going on. She released it and was ok to be done with it.
He then opened the box and just watched what she did with the things in the box. She 1st pulled out the dump truck and said Truck or I should say Uck. Thats right Cami that is a truck that was a first she usually calls all vehicles a "car". She pushed it around for maybe a minute and then was back into the box. She then pulled out the baby doll and said "Baby" and threw it in the back of the truck gave it a good push and said weeeeee babby.....Teehee...laughed my butt off! She went back to the box pulled out a muisical jack in the box this one struck her intrest the most. She would have us wind it up watch it pop up and then she would go and pull something else out of the box. She found a receiving blanket in the box and he asked her if she could give it to the baby she took it over to where the baby was and said hi baby and then said I go night night layed the blanket out and she curled up on it. She layed there for a few seconds hopped up and went back to the box found another blanket we said cover the baby up she would pick the baby up but would never give the baby the blanket. She would just keep laying the blankets out for her and lay on them and say I go night night. She then went back to the jack in the box wanting more instructions on how to do it. She seemed to be pretty stuck on that one. He finally moved her over to the table again and said lets have a birthday party for baby and set the baby on the table. He got out the playdoh a plate and some forks. He took the playdoh out patted it into a round cake and put one glitter stick into it and let her do insert the other 2 which she did willingly. He then said lets blow out the candles in which she leaned forward and pretended to blow them out. He cut the "cake: into pieces and put her a piece on her plate and one on his. She tried once to take a bite but we quickly stopped her. He then asked her if she could feed the baby a piece she tried to poke it but its playdoh kind of tuff stuff. So Jason leaned over and tore off a small piece and put it on her spoon she headed the spoon towards the baby and just layed the bite in the babys lap she then picked up the whole plate with frusteration of not being able to poke it and dumped the whole thing her lap....LOL! He said good job Cami and was ready to move on.....Well she was not and this lead to the biggest screaming match of all where she tried to pull her clothes off and threw herself down into the floor arched her back up and screamed loudly. It took a while to get her over that one.

(teehee) just had to put this fit picture in there seemed appropriate ;) she didnt wont to sit down...LOL!
He did some bubbles with her which she enjoyed but by now she was tired and was getting easily frusterated. He went out again watched us with he from the 2 way mirror and then came back in after he went over all his notes and papers we had filled out. He said she definetly had some autism behaviors but mildly. He said the main thing that held him back from the actual word of Autism was that she is social. So he then gave her the Diagnosis of PDD-NOS which is a milder form of autism. He also told us that "He thinks" she had a problem before the onset of the seizures which may have brought them on, and not that the seziures caused her these problems. He said shes been seizure free for 2 years she should be further, yes it caused regression but shouldnt be this far back. Who knows its still such an unknown! He said congnitive is very low. Her just all around understanding things is delayed. He said she doesnt register stuff like we do, he said case in point she may touch something hot and say hot but a few minutes later go back and touch it because in her mind it did not register. She has no fears! I was just telling him how she walked out in front of a car and just stood there in our cul-de-sac we tell her she'll get ran over and she doesnt understand that. He was also talking about her reconigtion of objects, everything to her that is round is a ball, every animal is a doo, he said she has difficulty sorting those things out. He thinks she needs more one on one times specially in speech. He said 30 mintues twice a week with other kids is not enough for her. Hopefully school will step up more in that area. We are also looking into options with our insurance. Its says they will cover 20 visits a year but its only for children who were injured in an accident.....What kind of crap is that? What about kids with learning disabilities.....uggghhhh! Thats so frusterating, I've about had enough of there crazy solutions to medical nessecitys.
We are in search of ways around this I know there has to be something out there more for her. That doesnt cost an arm and a leg. Vanderbilt did give us some free behavior classes and potty training classes for special needs that we are definetly going to be attending. SO its a start!

He is also requesting some genetics testing to see if there is anything there that may be causing problems. Will another answer help? I dont know but a little blood draw cant hurt! So we just go from here and help her in anyway we can. He suggests a more structured routine at home to prevent the tantrums, she seems to do well with a routine like at school. So thats what we will shoot for ;)

These where all pics from our camping trip to Gatlinburg! The one below is my favorite of the two of them together!

My favorites of Caleb: Man was he being such a poser for me...totally out of his norm!

Heres the Doos Cami kept showing intrest in! These where at putt-putt!

Our site all set up right on the creek, man was it nice!

They loved the creek!

Time to dry those cute tootsies Caleb!


JSmith5780 said...

I got your email this morning and never got a chance to reply. Connor was originally diagnosed with PDD-NOS. And for the same reasons. He was and still is very social. He likes people and talks to people, but ONLY about what he wants. He about always turns the conversation to Thomas the Tank Engine. You could mention the weather and he'll tell you about the weather on a Thomas movie, etc. Also, though he loves people he prefers solo play.

The routine/structure was and is our biggest problem. Early in the diagnosis he'd be stuck on driving directions... meaning he knew which way to go and if you went a different direction, screaming would ensue. He's better about directions, but the littlest things and he tantrums. Things got ok for awhile, but now the tantrums are back, in full force. Jeff and I are starting to worry how this will work out in Kindergarten next year.

Fortunately for us, Connor's cognitive skills are fine. He's even taught himself how to read some words. He can count and do basic math.

Because of this, they have changed his diagnosis to Asperger's.

Good luck, it's not easy but you'll get through like you always do. Structure and routine is the most important. Plus, give her verbal count downs to changes. Like 5 more minutes with that toy, or 5 minutes til bed. Remind her again at 3 and 1 minute. Give her time to prepare for the change.


Jennybell said...

About insurance covering speech. We're in Ohio and we have something called BCMH, which is state funded and according to the public health nurse in our county these state programs for Children with medical handicaps (the CMH part) are mandatory for every state, so you're right something HAS to be out there it's just finding it. Our program is all from our local health dept. An Autism diagnoses would actually probably open tons of doors, there's special schools and grant money and all that.