Sorry, one more post... i forgot....

iVillage Member
Registered: 05-24-2003
Sorry, one more post... i forgot....
2
Thu, 05-29-2003 - 2:13pm
I was finally able to get through to a Clinical Psychologist. He said he could see us in the morning, at 9:30. But he didnt want to meet with Catie yet. He just wanted to meet with me and Dh. He asked for me to bring all of Caitlin's speech and behavior therapy records, along with any assessments the state has done.

I am running down to Farmington today, about 20 minutes from us, to the Early Intervention Center to pick up her folder. Hopefully they will include everything i needed.

Is this similar to something you guys have experienced? Is there something i should make sure i point out? What happens if i feel like he doesnt believe us? He mentioned on the phone that Early Intervention should have already done her assessment. Well, i dont think they really have. I mean, she has had home visits up until last month, when they did a hunch of tests to confirm she still qualified for Early Intervention and for Free Preschool. Which she did. But her home visits have stopped. And when i would bring up my concerns to the therapists, it was more of a personal opinion on the matter. Like "Well, in my experience with her, she is too social, she blah blah blah, IN MY OPINION" BUT, these people are also in my home for 30 to 45 minutes ONCE a month. How in the heck do they know?? PLUS, Catie thinks anyone who comes to door is here for HER. I have to PEEL her off the UPS man. She freaks when he comes. She motions for him to come in and says "lets go!" And he thinks she is so cute.

But i mean, geez. If a parent mentions it multiple times, why dont they just test her to shut me up? you know???

:sighing:

PLEASE... any suggestions on how i can handle this to make sure i get out of this meeting what i need, would be greatly appreciated. Of course, i dont want her diagnosed incoorectly. I just want someone to be able to SHOW me she DOES or DOESNT have it and why they think that. You know?

Thanks

Helen

iVillage Member
Registered: 03-26-2003
Thu, 05-29-2003 - 4:36pm
Yeah, I know, believe me, I KNOW. We fought for a correct dx on Jade for over 3 years. She was evale'd by the scool district, the military hospital, and two private hospitals who all gave her different dx's. And NONE of them 'fit' her at all. The closest anyone came was to say that she had moderate autism, but that was blown out of the water after her cognitive tests came back in the normal range (barely). We finally found out that a lot of her dev delays were due to her being born so premature and a scale was adjusted to compensate for that. When everything that the ALLIS could account for was taken out of her profile what was left was a clean, crisp, discription of an Aspie.

Now, the one thing that tends to through clinitians off is the belief that all persons on the spectrum are reclusive. While this is true in most cases, it is not true in all. The thing that throws most people off is the wording of the dx criteria, especially in the first section where it says "Failure to develope peer relationships appropraite to developmental level". The key word here is 'develope'(the first time it is used). To develope means to progess, to enrich, to grow, to mature. It DOES NOT men to initiate, which is what too many clinicians have come to believe. (another case-n-point AGAINST being 'politically correct')

Jade and DH are very good at initiating relationships with their peers, but actually maintaining them, or getting them to grow and mature, is whole different story. DH only has a wife and friends because we know he is unable to meet us halfway and we are willing to do the extra work to maintain the relationships. Jade, has no problems with introductions to her age peers. This last weekend we went to a museam and while waiting in line she approached another little girl and within 30 seconds they had gone from exchanging names to playing RPS. BUT, I had to remind Jade that she needed to tell the girl her name not just inquire about the other girl's. AND, instead of looking into the possability of the girl and her dad joining our group for the tour she simply turned her back on the poor girl when it came our turn to step up to the admitions desk. She can initiate quite well, but maintaining is a real problem for her. She, and DH are constantly doing things that are 'socially unacceptable' becasue they have no clue that they are. They can't read another person to save their lives, and forget about recipriaction unless reminded. At first they seem perfectly normal. It's only after time that a person beggins to see that they are different.

On the surface they are outgoing, respectful, thoughful, etc. But that lasts for a very short time, and then they seem, redundant, distant, and well, just strange. Dh tells the same stories over and over and over. He can't remember if he's told them to you or not. And that's what his conversational skills come down to....stories, and HE has to be the one telling them. I recently had to testify in a trial as a key wittness (victim) and the DA said it would help me to remember things if I talked to my family and friends about them. Well, DH didn't have the attention span for it, even though the subject was incredably important to me. If I didn't know he was an Aspie I might have divorced him for his lack of interest on the issue (it was THAT important). But I did know, and I took it in stride. I talked to other people about it instead.

Jade and Ayla do similar things. They will start listening to someone else speak, and they seem honestly interested. But very quickly they will start asking questions (constantly interupting) and turn the topic so that it somehow is centered around them. For instance, in school I was giving a lecture about Killer Whales. I said "The orca were given their nickname, Killer Whales, because they kill and eat other whales, such as Dolphins." Jade interupted with "But they don't eat little girl's, right? They wouldn't eat me, right Mom? I don't don't taste good to them, right?" Now, mind you, this was said without an ounce of fear. She wasn't afraid of being eatin by an Orca, she was just scientifically curious. But it HAD to revolve around HER.

I really hope this dr you are going to see can see that being outgoing doesn't mean a person has the ability to maintain appropriate relationships. You might try pointing out that a lot of Catie's outwardness is somewhat non-orrigninal. it sounds to me like she finds a behavioral formula that gets attention and tries to stick with it. Also, she doesn't sound like she is very good at reading the behavior of others. Granted, most 3yo aren't experts at it, but most 3yos don't accost the USP guy at the door (Jade and Eva do this too). If I were you I would concentrate on the inappropraite social behavior when you talk to him. Catie sounds like an adorable little 'ham'. Contrary to popular belief, this is not normal for a 3yo. It is a flipside of the 'little proffessor syndrome'.

I hope everything goes well for you guys tomorrow. oh, btw, one of the many reasons they ask to meet with parents first is beccause over 80% of the time autism is genetic and they wat to see what side of the family it is coming from. I know you said you didn't have any autism in your family, but you'd be surprissed. I didn't think I did either. Come to find out that the MAJORITY of my family had AS and had never been detected before.

Peace and good luck,

Candes

P.S. Sorry for the book, I got a llittle carried away. I do that sometimes.

Peace,
Candes  
iVillage Member
Registered: 05-24-2003
Thu, 05-29-2003 - 6:03pm
Thank you so much for all the information. Looking back over how Catie approaches the our neighbors children, she imitates. ALOT. The other girls are 4, 4, and 2. RIGHT around Caitlins age. The 2 year old tries to just dive in to what the 4 year olds are doing, while Catie is some where on the side, playing by herself. She is still in the "play next to" stage. When there is just one girl, she copies everything she does. If "Sarah" runs down the hall, Catie runs down the hall. If Sarah jumps on the couch, Catie jumps on the couch. If Sarah is playing with a doll, Catie tries to take the doll. I try to teach her to share, to find another doll, etc. Once she is given another doll, she will mimic everything Sarah does. That is her idea of playing. Since she cant talk, or talks very little, there isnt much back and forth. "Sarah", the 4 year old she sees most often, is quite bossy and can be down right mean and cruel. She can also be aggressive, so i try to limit Catie's interaction with her. Everyone keeps telling me that interaction is BEST for Catie, and that she needs to learn how to deal with aggressive children and social behaviors. But i have found, when Catie is around one or both of these 4 year olds, she seems to get picked on. They seem to get rough with her and just want her out of their way.

And i am sorry, but i dont think that subjecting my child purposely to children who are mean to her is teaching her social behaviors. It is cruel. She has been punched in the face, they have placed her in the middle and pushed her back and forth between them, they have even tried to slam her into a metal frame bed.

If you ask them what is going on, they say "we told Catie to stop... and she wouldnt"

Well, hello, she doesnt understand. She wants to be just like you. She is doing it to be your friend.

So now what? The other parents have tried to explain it to them, and i try to put the 4 year olds on a pedestal saying she really likes them and idolizes them and she just wants to be just like them. But usually it ends up to be a "my toys, she is following me, she wont stop, blah blah blah" kind of thing. it gets really old.

I plan on trying to make some notes tonight so i can remember what all i need to tell him. You know, incase he asks for behaviors.

I picked up the records from the local Early Intervention office. And i am angry. i asked them for a copy of "everything in her folder for the last year." All i got was her tests and test results last month. 6 pieces of paper. Frustrating. So i have no proof to show him that yes, at 2 1/2 she was playing with toys for 28 minutes. I guess if he wants the records, we can request them again.

As far as her test results, on the second page at the top it says in plain english "uses more gestures than words". HA! hello?

Her Auditory Comp score was 24. Her Expressive Communication was 26.

They said on standard scoring or her total language scores, average kids score between an 85 and 115. She scored a 66 and a 72. So she was below average on those scores.

On her behavior testing, the average was between 85 and 115. On communication domain, hers was a 71. On Daily Living Skills, hers was a 67. On socialization, hers was a 74, on motor skills her was an 84. Adaptive behavior was a 68.

On another test, she wouldnt even try to preform the gross motor skills, and they tried that test on three seperate days. Two at the center, and once at our home. She refused to try the test and cooperate. Visual reception, she got a 20. Fine Motor, she got a 31. Receptive language, 24. Expressive language, 28. On this test, the average was between 40 and 60.

She didnt pass one single test they gave her. She scored low on everything. Everything has Low and Very Low written out to the side.

Caitlin is a ham, but every behavior she does is "learned." We taught and still tell her to say "Hi". She then goes into her scripted "Hi, how are you? I am chillin'" You try to expand from there, and it becomes garber, and she stops making eye contact. If she wants you to do something, she motions for you to follow her, or to get up and she will say "Let's go" or "Up, please" and then she will sign please.

She is very much a ham. At her 3rd birthday party, my family went out to a loud italian resturant. I always pick loud restuarants with hard floors, so she wont be disturbing anyone. Learned that early. When the whole table broke out in song, and they were all looking at her, she looked up, her eyes got very large, she smiled, then stood in her chair, and clapped when it was over. It was like that was the first time she had ever had that happen. And let me tell you, her birthday came and went and she had no idea. She saw the cake with butterflies on it. She loved that. She saw the gifts. But she didnt know they were hers. And there was no anticipation. There was no excitement. It was just another day for her. We had to light the candle FOUR times because she kept blowing them out and we couldnt get a picture, but she has an obsession with candles.She stands on the floor in my living room, looks up at the entertainment center, and tries to blow candles out on my entertainment center. It took me a few minutes to figure out what she was blowing at. It was quite funny actually. Her face was red, and that candle was meant for her to blow it out. LOL

I will definately try to get DH to sit down tonight and we need to gather our thoughts. We need to discuss things and make sure we are on the same page. I dont want to go in there pointing things out only for him to go "well, i dont really see that." Most of the time he will keep his mouth shut cause he knows and acknowledges i am the one who is here with her all the time. But up until now, i have done ALL the research on As/pdd/autism. He hasnt taken the initiative to do anything. I chewed him a litte the other night and he said "when she is diagnosed, i will research." My argument to him was "So you are going to trust THIS doctor to make a correct diagnosis? What about all the pediatricians? What about her ENTs? If i just sat back and said "ok" everytime someone in the medical field told me something, i cant say my daughter would be where she is today. I had one ENT who told me it was MY fault she had drainage coming out of her ears for a MONTH. ALL he did was tell me i was getting water in her ears. No antibiotics, no shots, nothing. I ended up going to someone else cause she was MISERABLE and she had this gunk seeping out of her ears non stop. This is stupid. I wont sit back like a sitting duck and wait for someone to diagnose her correctly. i will educate myself so i sound like i know what i am talking about. If you wont, then dont bother coming to the meeting."

He admitted i was right.

MEN!

Sometimes they dont realize how far a little support can go. Sometimes i get tired of being the Mean one! lol, i get tired of chewing people out. I would love to have him take over for a little while. I am tired of it!

helen