Re: New member with slight HFA crisis

[Guest guest]

Hi Amy,

I don't have a lot of answers for you, dear. Just some thoughts: video

tape or audio tape her behavior at home. Take the tapes to an MD you

can trust or the one who diagnosed the other child. Explain calmly

that you're having these troubles with the school and spouse who are

not supporting you in battling this problem. Take someone with you to

the doctor who will help give you moral support. We get emotional

about these situations and we become irrational-appearing and others

see it. Then we lose credibility. We need to stay as calm as

possible when talking to the doctor. You're paying the doctor so

he/she will listen and will probably be on your side more so than the

others, anyway.

I recommend an MD because the school will not bully him/her. Get

someone with authority on your side and then battle the others with a

letter from that doctor or whomever it is.

I have a somewhat similar situation but not as intense. Fortunately my

son's teacher did think he has Aspergers but special ed disagreed. A

lot of times special ed doesn't want to acknowledge there is a problem

because that means they have more work to do. (And truthfully, they

are busy, let's face it. But it's their job.) But you should be able

to get a time-out break for your daughter. My son comes home and

paces a super lot after school. He doesn't do it at school though,

just at home where he's comfortable.

God bless you, dear.

Beth

[Guest guest]

I would put up a few video camera's in your house and video tape what is going on. Then you can prove what you say is actually happening. It sounds like she has major anxiety problems. Does the doc have any help for that?

RoxannaAutism Happens

( ) New member with slight HFA crisis

Hi everyone,I am new to this group. I have a 10 year old with severe autism and a 7 year old with HFA. My daughter is indistinguishable to many people. She still has a lot of sensory issues, is diagnosed with CAPD by a very, very reputable audiologist, and has some problems expressing herself.Specifically, whenever she is anxious she blurts out what she thinks the other person wants to hear. She describes it as being unable to access or speak about how she really feels inside. She can pretend to be fine for long periods of time, and she does - at school when she is experiencing sensory difficulties or at her dad's where she is very uncomfortable with a lot of things there. She is at school 5.5 hours a day and at her dad's 2.5 hours a week and both places she will crash and start crying and describing the sensory difficulties she had that day, immediately when I pick her up, but never demonstrate her feelings or ask for help while she's actually in the situation. when I try to encourage her to do that, she says "I get so scared that I can't remember the words." We practice sentences that she could use, but sometimes she's afraid no one will believe her because she doesn't know how to show on the outside that she's in distress, which is a really big problem for us. It's actually gotten me in huge trouble. When I asked for sensory breaks for her at school, the school counselor accused me of convincing her she had a problem. They did behavioral and sensory assessments and concluded that she wasn't having problems, because she wasn't exhibiting any outward signs of distress. The school reported me to child protective services for Munchausen's by Proxy, even though my daughter's OT, doctor and audiologist confirmed the diagnosis. Even the CPS worker had a hard time understanding how I could "claim" my daughter was on the spectrum when she got A's in school and didn't pose behavior problems. Her dad is working with the school, arguing that she doesn't need sensory breaks or CAPD accommodations in the classroom, and that this is all in my head. When we are home my daughter mainly talks to herself. She is extremely sensory defensive, especially to sounds and touch/textures. She has a huge set of rules for her life - what order she gets dressed in, where and how and what she eats, how she can tolerate being interrupted from her imaginary play. She gets so distressed if things aren't how she needs them to be. She will spend hours in a room alone pacing the perimeter and talking to her imaginary friends. When she is at school or her dad's she pretends to act and talk normally, and doesn't talk to herself. This is exhausting for her and makes her anxious, but she feels that her real self is private, and only feels comfortable doing those things at home.To me this is so adaptive. She can function in a regular class and have friends and not be seen as different, even though she is. I don't pressure her either way to act a certain way at home vs. the outside world, she's just naturally developed that as a way to function, which I always found brilliant of her. Now though her dad and the school are criticizing me and her dad is taking legal action against me (as did the school when they made 2 reports to CPS) because they are insisting that I am making this up. That she is not on the spectrum, based on how she appears when she's at his home or in school.I have started taking her to counseling. The problem is, why would I encourage her to start having tantrums, crying and stimming in front of her teachers and at her dad's house, when she herself is able to contain those things to home? And she only stims when she feels safe doing so - not where she'll be corrected, criticized, or possibly made fun of. Isn't that one of the ways that "high functioning" manifests itself, in a person's ability to function in the NT world even though they're not?I am really seeking some support on how to proceed, and just if anyone else has dealt with this sort of thing. I don't know what to do. I am having trouble even explaining what's going on to the people involved in a way that makes sense, since they never see her do any of those things. I think she is such a beautiful, brilliant, perfect child just how she is, and I respect her abilities to present herself so well in NT settings. But it's exhausting and very hard for her, and when I try to get the slightest accommodations, people think I've lost my mind. Has anyone else been in this situation? What have you done?Thanks.AmyNo virus found in this incoming message.

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[Guest guest]

Great advice. One thing that does help in these situations is to have a string of professionals behind you to help ward off problems with ex's and school's and police. When our younger ds (hfa) was little, he would walk outside all the time and he never wanted to wear clothes. Imagine how often the neighbors called police, sigh. We had our pediatricians home phone number (he was such a wonderful doctor and person) in case there was ever a problem. I know I felt much better knowing we could get him involved if anyone caused us grief over this.

RoxannaAutism Happens

( ) Re: New member with slight HFA crisis

Hi Amy,I don't have a lot of answers for you, dear. Just some thoughts: videotape or audio tape her behavior at home. Take the tapes to an MD youcan trust or the one who diagnosed the other child. Explain calmlythat you're having these troubles with the school and spouse who arenot supporting you in battling this problem. Take someone with you tothe doctor who will help give you moral support. We get emotionalabout these situations and we become irrational-appearing and otherssee it. Then we lose credibility. We need to stay as calm aspossible when talking to the doctor. You're paying the doctor sohe/she will listen and will probably be on your side more so than theothers, anyway. I recommend an MD because the school will not bully him/her. Getsomeone with authority on your side and then battle the others with aletter from that doctor or whomever it is.I have a somewhat similar situation but not as intense. Fortunately myson's teacher did think he has Aspergers but special ed disagreed. Alot of times special ed doesn't want to acknowledge there is a problembecause that means they have more work to do. (And truthfully, theyare busy, let's face it. But it's their job.) But you should be ableto get a time-out break for your daughter. My son comes home andpaces a super lot after school. He doesn't do it at school though,just at home where he's comfortable.God bless you, dear.BethNo virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.3/1563 - Release Date: 7/20/2008 12:59 PM

[Guest guest]

That is brilliant. I could put a camera where she wouldn't know it was

there, because if she saw me with one she would stop right away. I feel

bad needing to " prove " that she's HFA to her own dad...but we're in

court over this, he's refusing to pay for ANY of the medical bills or

any speech, ot, etc. so it's pretty much me and a video camera right

now. Thank you so much for the support and suggestions.

I have been through such a difficult year with CPS, the dad, the school

and I just can't believe what I'm reading - that other HFA kids are

just like my daughter. I was starting to think maybe it really was

just in my head. Really, thank you all very much.

Amy

[Guest guest]

> ...I'm not sure if

> we're allowed to use names here but a very reputable audiologist and a

> nationally known DAN doctor have wrote thorough, detailed, excellent

> reports for us (not that the school listened - they dismissed

> everything in four reports.)

Don't forget to take these to court with you! --Ruth