Tuesday, December 12, 2006

PIG!

Yesterday was our developmental psychologist appointment. It was awful. It was awful in ways I couldn't even imagine. Wow.

The night before, Josh took a Benadryl and an Excedrin migraine to ward off allergy problems that were starting to give him a headache (he suffers from migraines). This combination gave him a buzz and the munchies, so being the wonderful wife I am, I stayed up with him and watched TV until he got sleepy around 2am.

I had to wake up at 6:30am to get to the appointment on time, so I was quite sleepy. Lack of sleep is my kryptonite, so I was already losing the battle upon waking. KayTar had to wake up at 7:15, and she normally wakes up between 9:30 and 10am, so she wasn't quite herself either. We were out of milk here, so I took an empty bottle with me, planning on buying milk from the hospital cafeteria to fill her bottle when we arrived. Well, the traffic was AWFUL. It was miserably foggy, and it was also Monday morning rush hour. We were supposed to arrive between 8 and 8:15, but we arrived at 8:37, so there was no time to grab milk in the cafeteria. We got in the evaluation room and KayTar was instantly cranky. She was crying and whining for no reason. She is so easy going and she never fusses, unless it is bedtime or she needs to be alone in her crib for a while. This was HARDCORE fussing. When she was an infant, we couldn't go anywhere with her, because she would cry the entire time; I had forgotten about that until yesterday and she was suddenly that infant again. Even her blankey, which is her "defense mechanism" couldn't help. She refused to do things she normally enjoys. The only times she was quiet was when she was working a puzzle, stacking the blocks (which wasn't what she was supposed to be doing with them), and when she crawled away from us, into the corner, turned her back to us and talked to herself. When she came back, she was instantly fussy again.

She does so well for her ECI evaluations, she always exceeds what I think she is capable of, but those are done here at her home in her territory. They are relaxed and kind. The therapists make an effort to get to know her before asking anything of her. This was not that sort of experience. When we arrived in the room, the psychologist immediately started pulling out toys and "drilling" her. First she handed her a pretty bracelet, then took it away (making KayTar cry) and hid it under a washcloth. Of course, KayTar found it, but as soon as she did, the psychologist took it away from her again. Then, a ring on a strong was dangled in front of her to see if she would grab it and "reel it in". Then it was immediately put away. Then she was given blocks, asked to put them in a cup. KayTar made an impressive stack of ten 1-inch cubed without toppling it, but she refused to put them in a cup. Then she was handed cups, spoons, and a baby doll. She stacked the cups and put the spoons inside the cups. She held the baby for a moment before unstacking/restacking the cups. Then they were taken away. She did a puzzle, it was immediately put away. The psychologist attempted to read a story to KayTar. KayTar was enraged that she could not turn the pages at her leisure. Right after this, she pulled out another book and asked KayTar to point to the dog. KayTar was enraged that 1. the other book was gone, and 2. she was not allowed to flip through this book on her own BEFORE being asked to identify things. She loves to point to pictures in her books, but she wouldn't do it yesterday. She just cried and cried. It went on and on like this. The toys were brought out, commands were given, they were or were not followed, and the toys were put away. Every time the blocks emerged, she calmed down and stacked them; but those were never the instructions. The first block round, she was supposed to put them in a cup; the second round she was supposed to copy the psychologist and build a "choo-choo" with them; the final time she was supposed to put them into a box. She stacked them. She was upset every time they were taken away. She exceled at the puzzles, as always. She was upset every time they were taken away. She wouldn't play ball with me in the hallway, although she was happy to be out of the exam room. She put the pennies in the bank like a champ, she LOVES this and does it frequently with her Aunt. She was upset that once she filled the bank, the psychologist wouldn't pour them out again.

While I was there, I wondered "Why is she being so awful? Is she really this sleepy?" and the psychologist kept asking "Is she always this fussy?" But in retrospect, this was exactly the kind of environment that upsets her. She loves to be in control. She loves to take her time, and do things over and over. Her therapy sessions go so well, because she is allowed to spend as much or as little time on a skill, and she can switch from one task to another as she wishes. She dislikes new people, unless the attempt to connect and let her forge the connections. She is social and loving, as long as you let her "make the first move". She didn't know this lady. She only knew that she gave her toys, made demands, and took the toys away. That isn't the sort of behavior that fosters trust and cooperation. So in retrospect, I think maybe she was more herself than I orginally thought, because it is possible that the environment brought out the "worst" in her so to speak. It was not an agreeable arrangement for her temperment.

After this wonderful session, I had to sit in the room with KayTar while I filled out a 6 page questionnaire about her. She fussed and refused to play. I finally put her in her stroller next to me with a biter biscuit and bought myself a bit of quiet. She started saying "Ga!" over and over, which is how she says "pig". She LOVES the word pig and it gives her the giggles every time. So while filling out the questionnaire, so had to turn every 30 seconds and exclaim "PIG!" much to her delight. PIG! Is what got us through. The psychologist did make a positive comment about this, "I see she is using language to get your attention, very good." I was very distracted, so I hope I answered the questionnaire accurately.

Josh and I are worried that based on her behavior yesterday, the psychologist is likely to come back and say autism, when we STRONGLY disagree. I have researched my little rear end off, and autism has never been a fit for her. Even if she shares sone tendencies, her overall behavior says otherwise. She is loving and friendly and quick to make friends, as long as people respect her boundaries and allow her to initiate contact. She is comfortable enough with her therapist that by the end of the first session, she usually ends up in their laps cuddling. There are other reasons we feel it isn't a fit, but the social aspect is a large one. Autism is not a bad thing, definitely not the worst we've been faced with throughout this ordeal, but we do not want her wrongly labeled because of a bad day. We are afraid the psychologist might latch on to the obvious tendencies and not go any deeper.

Also, if your child has been through one of these developmental psychological work-ups, please let me know if you had a similar experience....or if your experience was different than ours. I wonder if they are structured this way to bring out the "worst" in a child? I'm very confused about the whole thing. Are they meant to be frustrating? We were there from 8:40-11:15, which is a long time for a small tot, especially at that pace. I'd appreciate insight on this one, I find I'm a bit lacking because it is a first for us. She has always been a shiny, wonderful version of herself at her evaluations, always exceeding expectations I had. This time was just so strikingly different, I'm not sure what to make of it all.

10 comments:

Shel said...

If that psychologist is worth her salt, she will factor those things into her evaluation. She should know that kids don't always behave when faced with stressful situations or even unfamiliar ones. She should be able to predict how a child will react to a strange place at an early time and unusual requests. Those predictions should direct her to an appropriate evaluation. I think Kaytar acted just as my three year old would have last year in a similar circumstance. She has been completely on schedule developmentally since she was just a few months old. She was a preemie so for the first year they adjusted for that. After a few months, they didn't need to adjust for developmental rating. They did anyway, even at the last PAT screening they had a line showing the adjustment. So I don't think she acted at all different that any child placed in that kind of situation would. I have two girls and they both would have reacted that way until about age 3.

ewe are here said...

I have no experience with these types of evaluations (other than my own as a small child). I have to say: the way this one was done? sounds rushed and designed to bring out the worst in a small person. What the heck are they thinking?

If they come back with a diagnosis you disagree with -like autism- I agree you should 'fight' them and demand another evaluation. One where they take the time to do a 'better job'.

You sound like a great mom.

bubandpie said...

What is wrong with these people? That sounds so stressful - I can't imagine any 3-year-old performing well under those circumstances.

JSmith5780 said...

I will try and keep this short. I have been through these evals numerous times with my two boys. Because Austin 'just' had epilepsy and the delays resulted from that, the process was much smoother. With Connor it was EXACTLY like you describe. It is fast paced, it is intense and it's not a fun experience. Based on your description I was able to 're-live' Connor's evals. Not that I wanted to :)

Pervasive Developmental Disorder encompasses 5 categories....autism, rett syndrome, aspergers, childhood disintegrative disorders and pdd-nos. This website has a fabulous description of all of them. http://www.childbrain.com/pdd.shtml

Now you have to remember that there can be MANY levels to each type of disorder. Connor has PDD-NOS, but he definitely has a mild case and the dev. ped feels that he will lose the diagnosis. That's another key point, with intense therapy some kids can 'graduate' from these disorders.

Also, I found that having the diagnosis opened up so many opportunities for educational help. Connor was in Early Intervention and now that he is almost three the school district will be picking up the cost. He is in an integrated classroom setting. There are at most 8 identified kids and 8 typical kids. He receives his speech therapy in both group and individual settings. In the beginning they used PECS cards with him, but his communication is so much better that it's no longer necessary. He also receives his occupational therapy in the classroom and occasionally gets to go to the OT room where they have FUN stuff...ball pits, swings, balance beams, foam pits...a kids dream! He has been there 3 days a week for 2.5 months and has made tremendous progress. As of January he will be there 5 days a week. I hedged about sending him here, but I am SO glad I did.

Now...I hope you don't take offense but I will give me comments based on her testing. The fact that she does well at home, but didn't do well at the eval tells me there is a lack of globalization to her skills. For instance, Connor spends most of his awake time at my Aunt's house (I work). He has always done more, talked more, progressed more at her house then at home. Gradually this is changing.

They are also checking her ability to transition between projects, respond to verbal commands, picture/shape recognition and problem solving.

Another red flag I saw was her stacking of both cups and blocks. These repetitive type things are also signs of the disorder. Same with the pennies.

Connor also is very bright, he excels at the puzzles, etc. He can count up to 10, backwards from 5, can recognize his numbers...even told me when he stepped on the scale that he was 35 lbs (he was actually 32). He knows a bunch of his letters as well. Unfortunately, unless all the other developmental pieces (social/emotional and speech) are in place, the excessive brightness is a red flag.

I don't say any of this to upset you!!! I didn't want to see the reality either. Connor also craves attention from people (a big contrast to autistic kids)....but he prefers solo play and playing his way, on his terms. He lacks (but is working on) his globalization of skills. His speech has increased 10 fold. Now we just need to work on the intelligibility of it :)

Now that I have embraced this and tailored his therapy to his real needs, he is flourishing! And I am 100% confident that at his next eval in Oct 07, he will be diagnoseless.

Okay, so this really wasn't short at all. I have a ton more I can add. Take a look at the website I included. It has great information on it and even a criteria chart.

Please get in touch with me if you have any more questions about Connor. He lacks so many of the 'traits' of Autism, but I think the PDD-NOS describes him well.

Ok, I am really done now :)

Kyla said...

JSmith5780: No, I'm not upset! That was EXACTLY what I was looking for. I am definitely NOT upset by it. The things that were "red flags" for you, also struck a chord with me in the same ways....I just knew autism has never been a fit for her,regardless of those tendencies I see. You raise EXCELLENT points and I totally understand what you are saying. Thanks for the info, I will definitely look into it. :) This was exactly the kind of experience I was looking for from someone else.

JSmith5780 said...

So glad you weren't upset. Two things to add. Connor will be three in Feb. He is a twin and was born 4.5 weeks early. Does this impact things...who knows!

Second, my cousin's son is one month older than Connor. We btoh approached the developmental issues at the same time. He is also on the autism scale, but hasn't been diagnosed. He's actually more extreme then Connor. My point here is my cousin did not embrace this, has been very lax in therapy and continuing therapy at home and over the course of the year, Connor has FAR outpaced Aaron. Now maybe it's just the differences in the diseases, but I am sure her lax attitude plays a significant role. I have a hard time saying that because she is family, but it's the truth.

Keep up the great work with Kaytar. You will find your way through this possible diagnosis as well.
Jen

mrs darling said...

My child went through this testing at nine years old if you recall. Here is the link to my day at the testing center. Hoepfully it can be of some help. We were there from 8-5! Talk about exhaustion!

Our testing eval

Summer said...

We've got throught this too. I remember feeling like her life was hanging in the balance of putting those darn blocks in the cups.

At her last eval last month she still failed the darned choo choo. We chalk it up to her motor planning (dyspraxia) problems.

I'm impressed that she could stake 10 blocks without knocking them down. No way Anika could that at her age...way to shakey. I really hope ataxia isn't one her Katies issues. I really hate it.

Sorry it was so stressful. I hope the end report is helpful though.

Kristen said...

Oh man, what an awful experience for her. I hope the psychologist doesn't take the quick and easy answer. It seems these days that is almost always the way it goes. It sounds like you've done your research and will be prepared to rebut if necessary, though. Hang in there...

Em said...

You are not alone (and neither is Kaytar). The pediatrician gave up trying to evaluate G because she refuses to cooperate in these sessions (and hates them with a passion) ... which in itself indicates there are some issues (I guess). She always "fails" her evaluations and then does extremely well informally when people stop trying to test her. It isn't easy to get a true picture of anything... which is frustrating.