Question for Docs and Others RE: 4 Y/O Daughter.

[LilliLilli]

I was really hoping you could spare a moment to help me out and share a few words. I have been having some issues with my DD.

Warning: This may get long as I tend to over-inform.

DD with be four in a few weeks. We have been having trouble with her. In a moment of desperation I turned to the Internet some time ago and have since suspected aspergers for her after visiting many sites. If I, with my limited knowledge, interpret the diagnostic criteria, and interpret my DD's behaviors myself then I say she would meet the "criteria". But, I am NOT a trained professional by any stretch.

DD started preschool June '07 and was nonverbal in class and completely antisocial until the last couple of months. Per teacher recommendations, we have had a "full workup" by the school district. OT says she presented "fine". I rated her as having a "definite difference" in all four quadrants of the sensory profile. I was told this is impossible so the test was thrown out. He teachers rated a "definite difference" in both the sensory avoidance section, which make sense as she's not as comfortable in preschool. I may note that prior to my taking the test, the OT told me "don't assume that all of these are "bad", because some of these DON'T indicate a sensory problem". So, I feel like I was set up to be fibbing or exaggerating or seeking a diagnosis.

She tested at a 24 month old level at 46 months old for social skills. Her IQ ranged from 82-106 (visual/spatial rated low, knowledge was highest). The speech pathologist said her language is fine, but the psych DID say he thought she had trouble with speech processing, but when challenged on that comment, he backed down.

School district says no disability. Told me that it is a dominance thing and that it's a parenting issue. Daughter is just pushing my buttons.

Now, of course she is trying to be dominant at times. She is almost four. I think it's a law to challenge a parent. But SHE HAS OTHER ISSUES TOO!! They think she isn't being social because I WANT HER TO, and that it all boils down to that.

Now her 'symptoms'. Not social unless one on one. OK in group settings at preschool when given enough visual cues to get by. Still lines up toys, etc on occasion (star stickers on paper all in a row, lines up cars) granted I don't notice it as much any more. Covers her ears in class. Hearing is fine, but has trouble hearing me when she should (i.e. six feet away, but a fan is on too, yet I can hear her fine). Has trouble learning unless shown visually. Sensory issues (socks, shoes, hair clips, hair washing, certain foods -gags on mac n cheese-), Huge temper tantrums (over things like she can't get all the foil off the yogurt container), OK interacting with adults or babies after warm-up, preoccupied with getting hurt or others getting hurt, when she hurts herself doesn't tell me, just crumbles and cries, always know where we are ("if we go the other way we'll see school, but instead we're driving by the special McD's", even if we've never driven from one place to the other), etc etc. Though sometimes she'll up to a month or so with limited issues, and then flair up and be nearly impossible for a few months.

This is the short version lol. I am frustrated. I feel attacked. My mommy instincts say there's a problem and that she's always had one. Yet the school system basically says that I am overreacting and I have to just see how school goes next year and that she'll grow out of this. One person said that with going 5 days per week, that after 6-8 weeks "she'll be fine". Possible? Maybe I suppose, but she also used to go to daycare 4 days per week and had a lot of troubles there starting as an infant (very attached to one teacher, and I got a lot of calls because she was inconsolable and I had to pick her up). I first started staying home, partially because of her issues, 1.5 years ago (Oct '06). She's been in preschool two mornings per week for a year, and she was really only "home only" for six months.

She has been making some strides in school after I scheduled a handful of playdates with some of her classmates. Still only works one on one in class. They started her in a social playgroup for similar kids one day per week, and she has regressed some since going. The same person that said it's all me is her teacher (she mentioned that it is apparent that DD is allowed to "rule the roost"). When dropping my DD off at playgroup yesterday, she was fairly hysterical (told me she was scared to go), the teacher came out and just grabbed her from me (while giving me a "are you kidding" look), and I heard her say, VERY sternly to DD, "That's ENOUGH NOW!!". DD continued to cry, the assistant noticed me outside and told me to leave, DD would be fine. DD continued to cry for at least another minute, and after being watched standing there, I left. There's only one week left, and I am not sure I feel comfortable sending her. Trust was broken. Correcting her is fine, in that manner, it is not. That type of scolding, I feel, is left to a parent.

Any insight is more appreciated that you can even believe. I feel beat down. I want to fight for her and go see specialists, but I feel worn out. Plus I can't imaging being told again that she's just fine and it's me, or my interpretation of her. On one hand, she's only four and I don't want to force a label on her. On the other, I know early help is key. Her 4-year visit in in three weeks, so I am deciding whether I should ask for evals at Children's. Is it in her best interest to "wait and see"? I don't want to rush anything, but... I am a mom, what can I say.

Thanks,
XOXO Jule's mom

[LilliLilli]

I thought I would also add that she has some rigidity with things. Like when we go to a movie, she gets root beer and the kids combo and mom gets nachos and a diet coke, then we share some M&Ms and take the rest home for dad... If I veer from the norm then she is very distracted by it. All movie long she'll ask... Why did you get a Sprite? Or, "daddy, mommy didn't get nachos today, she got something else". She'll get fixated on it.

Also, when in large groups of people she puts her first two fingers in her mouth. When she is upset by something, she does "flap" her arms some... not sure if actually "flapping" or not, but she spreads her fingers and moves her hands back and forth in front of her body.

As an infant she banged her head constantly and refused anything other than formula until 9 months, and it wasn't until 13-14 months that she actually ate what resembled toddler-like food.

Thanks.

[Sally44]

You are obviously concerned about your daughter and don't feel that your concerns are being taken seriously.  
I started having concerns about my son when he was at nursery and he moved to the pre-school building at age 3+.  He really didn't settle there and didn't want to join in the class routines etc.  His speech was quite delayed.  He used to get over emotional about things and throw tantrums or get really distraught.  He had many sensory issues.  I had concerns about him starting school and even considered holding him back a year, but he would have had to continue at the nursery so I thought he might as well start school.  He had none of the skills needed to start school and I told his teacher so.  Within 6 months of being in the reception year they had called me into school with his behaviour of head banging, hiding under the table, rolling himself up in the mats, not being able to follow/understand instructions, walking up/down the room or round the table.  These were not behaviours I was not seeing at home.
I am in the UK and I presume you are in the USA?  
From what I have read in other postings I think you can approach a paediatrician and ask for a full multi-disciplinary evaluation.  This would be through Health as opposed to through Education.
If your daughter has any kind of speech delay/communication problems then it probably isn't Aspergers but could be an autistic spectrum disorder.  You also mention alot of sensory stuff which can be a diagnosis in itself, but can also accompany autism.
Your right to notice the rigidity of thinking in situations, especially when they are repeated that the child expects exactly the same thing to happen again and when it doesn't it really upsets them or makes then anxious because to them it is not the same thing as before.
I think I too was suspected of being over protective etc.  But everything I suspected has turned out to be true so now they tend to listen to me and if they don't I just go right over their head to the next person in authority.
I would say have a look at the clinical diagnositic criteria under DSM IV for both autism and aspergers.  Make notes on where you think your daughter fits with examples of behaviour and where she doesn't fit, again with examples of behaviour.
Start to write down everything she does that appears 'odd' to you so that when you get to see someone you will have all your evidence written down.
It is quite possible for someone to have traits of autism but not enough of them to get a diagnosis.
If, at the end of further observations, you are again told that there is nothing wrong, then you may have to wait and see how your daughter develops.  It may take a year or two longer, but usually if there are some problems they tend to have a knock-on effect on other skills that are acquired later on, so it becomes more obvious what the difficulties are.

[LilliLilli]

Thank you so much for your input. I am indeed in the USA.

I have actually written down all of her little quirks, it is what I originally brought to the district. I hadn't thought about relating them to the diagnostic criteria. That is a fabulous idea.

I guess I just need to get over my fear of being thought a little nutty (or a lot nutty). It's tough to be a parent. Either we are doing too much or too little. It's always too early or too late. I've never felt so judged in my life.

You'd think being 28 with two children they'd understand I can say how completely different she was! I guess I just need to have faith that we will get what she needs.

Thanks again,
Lilli

[Sally44]

Yes, I too have an older daughter.  And the first time I questioned my son's behaviour I was told that he was simply a boy and not to expect the same experience as I had with my daughter.  Then when I went to the doctors to query his repeating TV dialogue (this is echolalia), I was told that lots of children repeat things they have seen on TV.  I didn't argue the point with the doctor, because at that stage you do actually want to be told that there is nothing wrong.  The GP did say that if there were any real concerns that they would pick it up in school.  Well they certainly did that!!  But I do regret the length of time it took to start to get support in place.  We are still in that process now, so from when he was first identified by school as having problems at 4.5 years, he is now age 7.  And supports will not fully be in place until sometime after September this year for when he starts and new school year.  
Try to keep any information you have concise.  Eg. match a few points to the criteria (the most important ones), then if they have any queries doubts about those you can then raise the rest of your concerns.  Otherwise you can get bogged down in too much detail.

[TLC37]

My dd is 3 (since Feb) and my experience is similar to yours. Her eval today went 'great' in that she is perfectly normal by ChildFind's definition (school district)

But I know there is something wrong when I look at the signs... I have just made a long post about it, if you find it you can read it... it's 2am, I need to get to bed! :-)