New here...DD diagnosed with Aspergers.

iVillage Member
Registered: 05-13-2003
New here...DD diagnosed with Aspergers.
10
Wed, 03-24-2004 - 11:58am
I copied and pasted this over from where I originally posted it at the autism board at parentsplace...I found this more specific board today and I can see it has a little more participation. :)



Hi,

My name is Courtney. My dd, Paige, is 7 years old and in 1st grade. In Kindergarten, her teacher noticed that she had a lot of difficulties with social aspects, transitions, and overall attentiveness. By the end of her kindergarten year, after several different types of evaluations (hearing, speech and language, etc), the school psychologist evaluated her and suggested Aspergers. The school psychologist, by law, cannot give that diagnosis so we had to take her to a developmental unit at Children's Hospital (as referred by our insurance) to have her evaluated. We met with a behavioral consultant for about an hour and she said, NO, not Aspergers but inattentive ADD.

Well, in first grade, some things got better and others got worse. The attentiveness improved but the social aspects got worse in some areas (Paige over tries to be social often scaring kids away) and sensory issues arose (she chews on clothing, hair, paper, etc. and will just whip her shirt off if it "bothers" her). After a VERY frustrating meeting at school with the IST, I decided to take matters into my own hands OUTSIDE the school. A place called the DT Watson institute was suggested to me and I made the appointment. There, we met with a psychologist for almost 3 hours. He made the diagnosis of mild Asperger's and now we can get Paige the support she needs at school. Without that diagnosis, they could not allow the specialist who works with the children with autism even observe Paige.

I'm just looking for others who have children diagnosed with this so I can have some idea of what to expect now and in the future and maybe get some advice on helping her. This diagnosis was just given last week so I am just really starting out here. I have no clue of what is to come.

Sincerely,

Courtney (mommy to Paige, 7 and Gracie, 3)

iVillage Member
Registered: 03-24-2004
Wed, 03-24-2004 - 12:40pm


Nice to meet you Courtney!

It seems like we found this at about the same time! My daughter is also 7 and I can relate to what you're saying. We were told for several years that she was severe ADHD. We struggled with the school as well; they told us that she was inattentive and had behavioral issues. Lauryn even went through kindergarten twice because they thought she was immature and would "do better the second time around". Unfortunately the school wasn't equipped to even begin to help her. Public schools around here are very short staffed.

I'm so happy for you that you have your diagnosis! It seems that is the hardest part of the battle.

If it helps, it seems like since we received the diagnosis things have improved at home. It seemed to explain so much for us! I can remember all the times I drug her out of stores kicking and screaming holding my other daughter at the same time and wishing I could help Lauryn. It's a comfort to know that she is okay and that she had developed that way of reacting to protect herself from too much sensory noise.

I read a book with Lauryn called "Buster and the Amazing Daisy" by Nancy Ogaz. It was the first story Lauryn has ever listened to that had hardly any pictures. It's the story of a girl slightly older (I think she's about 9 or 10) and how she reacts to school and social situations. Lauryn looked at me after we read it and told me she was "special and amazing and if other people didn't get it, it was their problem". She is coping better everyday and her self esteem is getting better too.

I hope things just get better for you from here. I worked with Lauryn's school and she is getting speech/language therapy, will be placed in a room of no more than 14 students that is for communication disorders (NOT behavioral issues - those environments really stress Lauryn out) and a autism specialist was brought to the school to work with her current teacher and "redesign" the mainstream classroom she is currently in to be more suitable for Lauryn for the remainder of the school year. I will say that I have been working at this since October of last year and it took me threatening the district with pulling Lauryn out of school and hiring a private tutor at their expense if I didn't see action in two weeks. I hated doing that but it did the trick. :) There are other things that factor into her IEP. Lauryn has some major developmental delays so we are addressing those issues as well.

Sorry to write such a long post! I guess I've been itching to meet someone with such a similar situation. Please let me know if I can help in anyway.

Sincerely,

Alissa

iVillage Member
Registered: 03-28-2003
Wed, 03-24-2004 - 2:52pm
Courtney,

As I was just posting to Alissa, I wanted to let you know there are a few girl Aspies on this board, so you can get some very good "girl" feedback. Also, I wanted to welcome you to our safe harbor in the storm! We are very happy to have you!

Welcome,

Sio

iVillage Member
Registered: 05-13-2003
Wed, 03-24-2004 - 3:54pm
Hi,

It is good to know that there are some other parents that have girls with Asperger's here. I have noticed that the dynamics of the traits in girls usually differ quite a bit than the boys and there are not so many girls out there with it (or that have been diagnosed). I think there are 30 boys in our school district and including my daughter...3 girls...perfectly matching the 10:1 general statistic of diagnosed boys to girls.

I look forward to "meeting" some of the other parents. I'm sure I will have a LOT of questions along the way and hopefully someday I can answer some too. If nothing else, the support is what I'm thrilled to have found.

Sincerely,

Courtney

iVillage Member
Registered: 04-13-2003
Tue, 04-13-2004 - 4:58pm
Hi There,

My 4 year old DD has been diagnosed with Aspergers as well. She has a lot of sensory issues (chewing on everything including sand - blech!, rubbing stuff on her legs, etc.) low muschle tone, hand flapping, speech issues, fine motor issues, blah blah blah. She sounds worse than she really is. Very high functioning, actually.

Anyway, I just wanted to poke my head up and say "hi" because there aren't a lot of people with girls and their issues do seem to be somewhat different from the boys.

Welp . . . that's all for now. Gotta go make dinner.

-D

iVillage Member
Registered: 05-13-2003
Wed, 04-14-2004 - 9:39am
Hi,

I know what you mean about sounds a lot worse than it is. When you write it all down it just looks like there is so much there. Our days at home go well usually. Every now and then, my DD will do something or react to something in a way that I completely do not expect. At school or other places of socialization, she has a bit more trouble.

I think you're right. The dynamics of Aspie girls are a bit different than boys. Thanks for saying hi. :)

~Courtney

iVillage Member
Registered: 04-02-2003
Thu, 04-22-2004 - 12:32pm
Help Please - I have a dear friend who has a 4 yo ds. I love that boy to pieces and wonder if I should go ahead and reveal that I think her ds may have aspergers ? I have read posts here and I see that agony that parents go thru when given this information. He is a boy who is "different" in the way that he relates to other kids - I went to a Christmas concert of his and noticed that he sort of just sat there and didn't interact when they were playing group games, he was a little slower to talk and walk than most but now seems to have a good vocabulary and is smart. I have looked on websites and notice that he does exhibit the following characteristics: - knows everything about cars and will talk nonstop in detail explaining them in minute detail, even to kids who don't seem to care, is disturbed by loud noise, his mom says that sometimes he doesn't feel things that she would think were painful, doesn't make friends in playgroup easily ( has made some progress there lately)He had obsession in the fall with picking up every leaf in the world and saving it, and went thru a peiod where he would save every piece of hair he found, and would even go thru the garbage to rescue it. Sometimes I notice that he seems to go "blank" with no expression on his face. He has temper tamtrums when things don't go his way and is VERY set in his ways. his mom has to bring up new ideas days ahead before they happen so he won't be disturbed by it and is very upset when routine is not followed. He does take things very literally, and his large motor skills are lacking. He does meet your gaze and is very imaginative, and doesn't have any of the "flapping" mannerismsWhen a child is growing you very often chalk things up to just that - but when you see them in comparison to others their age and notice the big differnce it is concerning. He will be in kindergarten next year and I am worried - is it better to bring these things forth now or wait to see what happens then? Would it be better to do testing now - of do Dr's wait till an older age? what do you suggest?
iVillage Member
Registered: 05-13-2003
Thu, 04-22-2004 - 1:41pm
Hi,

Most of the traits you described really sound "Aspielike" but I am no expert. We knew nothing was different with our child until preschool and even then we found it all too easy to make excuses or come up with reasons for her behaviors. The leaves, the blank looks, Pre-preparing for changes, etc...we've BTDT with all of those things. There are definitely different levels of severity with Asperger's. If I were you, I would suggest that mom and you keep a journal of his behaviors and ask the pediatrician about it. See if he/she will give you a referral or look yourself for someone in the area who is credible and knowledgeable in these areas. I fully believe that the earlier you find out what is going on, the better. Just make sure mom trusts her instincts with the doctors. That will save her and her DS a lot of possibly wasted time.

You may want to post in the general discussions area to get the input of others that have more knowledge than me.

HTH,

Courtney

iVillage Member
Registered: 06-25-2003
Thu, 04-22-2004 - 4:46pm

Hi and welcome,


You're in a tough spot. I know when my dear friend asked *me* why my son didn't behave like other kids at a party, I almost took her head off. I was very angry at her for weeks, but her comment happened to be one of many from around that time, and was the straw that broke the camel's back.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 04-13-2004
Sat, 04-24-2004 - 11:35am
I know how hard it is to say somethng to someone you care for. I knew Jacob was different or "ODD" but I didn't realize how so until he started preschool. They had us scheduling referrals and evaluations within a week. Jacob is 5 1/2 now and was dx at 4 with Aspergers. Your friends son does sound like as possible aspie. It has taken me a year to accept Jacobs DX but he is still my odd Jacob that I will never change.
iVillage Member
Registered: 03-30-2003
Tue, 06-22-2004 - 11:32am
what do i suggest? Stay out of your friend life unless she asks for your help.

i don't mean to sound rude, but trust me your friend knows about her child, and she will do what is best. i have a friend in a VERY similar situation, really and i know that me saying something to her will not make a difference..........long story, here.......

best of luck,

and hope you are not offended, Julie.