Looking for MommaBear

[turlisa]

Hi Guys, I'm not sure if you remember me or not.  I havent been here in a very long time, but WAY back in the day, at the "other" site, I got to know a lot of you.  I am looking for MommaBear  (that was her user name at pa.com) 

Strangely enough, I have questions that right now, only she can answer for me... If she is still a member here, can you direct her to this post?  I would really appreciate it.

Hope you all are doing well. 

Lisa T

[ajasfolks2]

Hi turlisa!!

She is no longer a member here -- but you know there are tons of us here who would be happy to help in any way with your questions -- so feel free to ask!

Nice to see you & glad you found us!  Hope you'll stay!

~e

[turlisa]

Ajasfolks2, Its nice to see you again!  I had to google my name in order to find you, lol.  It brought up the letter I wrote ages ago.

My question to her didnt have anything to do with alleriges, I remember, though, that she had Aspergers, and I believe my daughter does as well, but is not diagnosed at the moment.  I know it manifests differently in girls than boys, and I just kind of wanted her expertise on the matter. 

With that being said, now that I found you all again, I will be sticking around. 

[ajasfolks2]

    So glad you found us!!  I've never forgotten your letter -- and I know I'm not alone here in that!

Lots of folks here with experience dealing with Asperger's, so I'm sure we can help and/or offer some resources.

[PurpleCat]

    Hi!

Sent you a pm.

[hedgehog]

  it's so good to see you again!

[turlisa]

Hiya Hedgehog!  nice to see you too.   I'm glad I was able to find you all again.

[SilverLining]

Hi turlisa    I was thinking about you the other day.  A mother forum I'm on, I decided to use the pixie avatar you made for me. (Yes, I still have it.)

[TabiCat]

Hi Turlisa-  I don't have contact with MB but I do have a sister and a niece with Aspergers and a son with HFA. If there is anything I can do to help let me know.

[turlisa]

Ok Tabi, I am assuming that you know a boy with Aspergers too, and keep in mind that I know everyone is different, but would you say the symptoms of Aspergers is significantly different in boys than in girls.

I ask, because I know quite a few boys around here that are on the spectrum, and given what I know about them, I never would have guessed that it was a possibility in my daughters case.  Now, I'm not so sure.

She has always been a little awkward, and by that I mean, she was content being a kid, she didnt try to grow up too fast like her grade counterparts.  She has a higher intelligence than most, even in 1st grade she was reading at a 12th grade level, and sometimes comes off as a know it all, though she doesnt understand why, and still doesnt know why when I try to explain to her that not everybody likes being corrected, or taught from a kid.  (btw she is 16 now)  She just sees it as trying to help the individual because they obviously didnt know it was " quote, END quote, instead of quote UN quote"  I mean,, you cant unquote something.  (just an example of what she does to correct someone)

Even though she is highly intelligent, she is not doing so well in school, because in crowded environments she is extremely anxious.  Its like she goes into sensory overload and shuts down.  Sometimes to the point where she just stares off into space and cant even respond if someone talks directly to her.   

She also has tics, almost like turrets.  These happen when she gets overly anxious.

She doesnt handle classroom situations well, as she is always aware of what is going on around her,  cant understand why the teacher doesnt keep better control of the class.  - why is that kid tapping his pencil, dont you see that girl passing a note, the boy over there is writing in his book and he should be paying attention  etc-     She doesnt understand that not everything is black and white, that there is a grey are and the teacher is picking her battles so to speak.

She wont eat anything but pizza, tomato soup and grilled cheese, Chicken sometimes, and a few different types of pasta, because she doesnt like textures and cant get past the way other foods feel.  She is OCD about a few different things.

She picks alot.  and by that I mean scabs, pimples, anything that is not smooth on her body she has to constantly pick.

I could go on and on, but does that sound familiar to you?  She has an appointment with her psychiatrist this week, and I am definitely bringing it up to her.  It will be so nice to actually have a diagnosis if this is what it is, because for so long my dd has felt "broken" and no matter what I say it doesnt change how she feels.

having a diagnosis will mean that we have identified it, and that feels like half the battle.

[guess]

Before seeking a diagnosis you should know going in the DSM-V removed Aspergers as well as others like PDD-NOS.  It collapsed to a singular code (ASD) defined by two main criteria (1) communication (2) repetitive behaviors.

Educational diagnoses are separate from medical for the purposes of designing an individualized education to deliver FAPE.  This would include twice exceptional students who need supports in talented and gifted programs.

If the individual's communication pattern consists very often of preferred topics and talking at others rather than with them in a sustained turn taking conversation on a shared subject that would be a red flag.

Anxiety and OCD are often secondary offshoot traits common with mild ASD, what many collectively still call Aspies.  The are not primary drivers in themselves for separate diagnosis from ASD.

If she's 16 with college on the near horizon I'd start on requesting eligibility under the IDEA.  Your district sounds as if they haven't been fulfilling the Child Find mandate most likely because she's been able to compensate on paper through sheer horsepower.  FAPE responsibilities typically are satisfied upon graduation.

My recommendation is to go through a developmental pediatrician paired with a clinical pediatric psych.  At the younger age a lot of weight is given to adaptive testing like the ABAS-II.  It can be administered at a any age, I believe but I have found it important to have at least a small team where they can share observations.

It will also help you with the district she's in now for IEP eligibility and later in college for accommodations or modifications like test taking.

[turlisa]

She does have a 504 in place, and since I started working and cant drive her to school they have approved an special needs bus so she doesn't have to ride with the crowd.

She has been seeing a counselor now for almost 3 years and seeing a childrens psychiatrist for almost a year.  Right now she is just diagnosed as possible adhd, depressive disorder and anxiety.  She is on meds for the tics, as well as depression, and even though it is helping to balance her moods, its not helping the whole picture.  I, personally, have never been one to want to take medicine for anything, and I dont want her to think a pill will fix everything, but if it helps her I wont deny it for her either.

So far the school has been doing very well as far as the tools we have in place, she is allowed to get up and leave the classroom anytime she is feeling overly anxious, however the flip side of that is she often wont call attention to herself and will sit there and suffer through it, then end up in the nurses office.  She has Apex courses at the end of the day, which is basically online classes she takes at school in a quiet and secluded area (her choosing) that way if she ends up having to leave in the middle of the day, she can still do her school work at home on her computer.

As a child, before the tragic incident that seemed to set it off dramatically, she always seemed sad and introverted, not understanding our attempts to tease her playfully, she would take everything so seriously.  She dwells on what she perceives as injustices and cant seem to let it go, EVER.

She is just miserable, like I said, she feels broken and even though I have seen improvement through the counseling, she doesnt see it.   At one point in her life, last year, I thought I was going to have to take her to the Childrens Hospital, she was on suicide watch.  I didnt let her leave my side for a second.  Thank GOD we got through that.  I never want her to feel that low again.

[guess]

Well, it's possible based on what you've listed.  Likely, even, and unfortunately you can go to different diagnosticians receiving completely different diagnoses.  It could also be that where ASD is the primary diagnosis with the others as secondary issues stemming from ASD.  What you listed is common with ASD (anxiety, OCD, depression) where the individual is constantly out of synch with the social situation with the smaller incidents snowballing into larger meltdowns.

504 is the tool when learning isn't affected for the eligible student with disability, a substantial limitation of a major life activity.  504 is not the tool when learning is affected and the student needs additional educational supports, and the protections under the IDEA are more substantial.  Any student eligible for the IDEA is automatically protected by 504 and ADA as well, so there is no trade off.

A lot of the special education we receive with ASD is not related to remedial material in the least.  It's been suggested that our child would register as gifted if he tested properly, but there is rigidity in thought, obsessive perfectionism, little things that he gets hung up on that impede his ability to master material incrementally.  He in turn gets frustrated, upset, feels stupid.  One of his best relationships is with an emeritus professor who shares his passion for mycology.  He's able to take what he observes in books at a graduate student level for taxonomical identification but in no way can he perform to that ability because his hang ups and inability to regulate keep him performing at markedly below potential.  He sees forests and individual pine needles but never any trees.

I will say that for some on the spectrum, if the developmental pediatrician is to be taken at his word on it, time moves differently with what is called transitions.  The perception of closure, the need for it, the passage of time, it may all lead to the inability to regulate a transition leading to, or played out in, perserveration.

Yes, I do see some key things that flag ASD.  But many of these criteria are standard in more than one diagnosis so you need an appropriate person for that job. 

IDEA could provide the student more help in resources both in school and the community if it is ASD and you have a diagnosis in hand.  Your state would be able to open up related resources to her, possibly in wrap around services, and you may further qualify for tax breaks if the student has an IEP.  I'm sure you know the medical bill fun we have. 

Overall even if this is a case of late diagnosis you've still been involved in intervention.  What may help is focus on social-emotional goals.  I'd be interested in what Tabi thinks.  I've got two on the spectrum and personality wise they are complete opposites presenting differently.  That's a hard one for people sometimes, they don't understand that not all kids on the spectrum are alike.

turlisa, I'm going to find the adult ASD org I came across the other day.  It's a self-represented group. 

[candyguru]

Hi Turlisa,

I remember you too. Welcome back!

Erik at PA.com (now candyguru)

[Jessica]

Welcome back!! I remember you and I take every opportunity to share your letter.