Behavior Challenge Thread

[alizesmom]

Alizasmom,

There is nothing easy, either for the child or the parent when there is little or no communication ability. This is especially true when sensory sensitivities are compounded with other medical issues, which manifest into these sensitivities

I would think if there has not been a diagnosis to this point that it is time to change clinicians.

Have you tried using the floor time model to help build connections? It is one of the most effective systems for children with limited communication abilities. Here is a link

http://www.icdl.com/dirFloortime/overview/index.shtml

What sort of support and resources have you been able to get from your local Autism society?

Any local Autism support groups? Often they have more “practical” ideas than most clinicians.

Wishing you and your family the best.

bookwormde

I really appreciate your willingness to help. I also don't know how to explain this without sounding ungrateful, snotty or mean but here goes. Ciara is not on the spectrum at all. When I say she's not diagnosed I mean that she has some sort of issue related to chromosomal damage with a possible FASD thrown in. Her "wiring" is not that of a person with autism and the methods we have tried are not successful. We are working to extinguish self-abuse with a great deal of success but when she becomes physically distressed (and you can't predict or stop pain or breathing problems), her response is to meltdown in a major fashion. Does this make sense? I will look into the floortime method, we are working with a behavioral therapist and I will continue to take all suggestions. Karen

 

[bookwormde]

I appreciate your position, but a neurovarition is a neurovariation no matter how it occurred (even though the actual structures may vary) and the autism community is the “specialists” in this (know where all the resources are), so even if your child does not have ASD components (which we all know is impossible to tell in most children with complex issues) they are a good resource. Floor time is good for a lot more than ASD so hopefully that will help. Discomfort whether it comes from sensory sensitivity or just the nature of the pain or some combination of the 2 has the same effect on both NT and ASD children and to a great extent the methods of moderating the issues are very similar. Also the frustration of not being able to be communicative also has similarities in its manifestation between ASD and NTs from other causes.

I guess I am just saying do not discount all methodologies used in ASD since they have application well beyond ASD with some adaptation, and remember that even within the ASD population the efficacy of any therapy or treatment is rarely above 25% of the populations so do not give up on what are typically ASD methodologies, I have seen lots of providers who have found it vary helpful to adapt therapies and procedures which were developed for ASD children, but with a full understanding of the basis for the therapy and needs and challenges of the children from different causes (as have therapies moved from the boarder disability community into the ASD community) to great advantage.

Again it is hard to do much about random events which cause discomfort but any that are repetitive and your current clinical team has not been able to address successfully would lead me to keep working through different clinicians with diffident experiences and specialties.

Please do not think that I what you are facing is easy, or that there are any easy solutions (as a parent of a spectrum child that illusion disappeared long ago) but that every child is an individual and it is not unusual with the complexities that are going on inside our children that cross disciplinary ideas can be adapted to help.

Honest discussion are what make this forum so great and helpful so I never impart any negativity to others different experiences and perceptions.

Again best wishes

bookwormde

 

[DisDreaminMom]

Ditto what Bookwormde just said. Because all of us at one time or another have had the exact same thing happen (or for some of us, for months and years on end) and we have had to get through it, too. It's tough. Trying to diagnose and cope with acute pain for an individual that is not able to communicate is one of the hardest things to do. I felt the same sense of helplessness when I had a horse or dog violently ill as I did during the 2-5 year old years when my son would do basically what your child is doing. I still to this day do not know what was actually wrong with him, but he would become utterly beside himself for a few days maybe every month or so, and no one could find anything wrong with him. He "grew out of it", but I still see him have "storms" that remind me of those terrible dark times when he was younger.

I am hoping that Grace has a super fabulous time on her vacation. And I have made a mental note to remember all the fiction tips exchanged on here. DS is really into burial techniques, cemeteries, mummies, etc. Too bad he can't write reports about that. It's like Halloween all year round in here

On the music front, he's been coming home from school and going up to his room and I can hear him practicing on his drums set, his viola, the keyboards, and the trumpet for about 10 minutes each instrument. It totally calms him down. It might be noisy, but I'm loving it. He got in trouble for whistling in the hallway (he's been trying to learn) and skipping in the hallway. I told my DH that we can't even get mad at him for that. AS my DD said, "What, are the schools against happy people now?" She's smart, that little stinker.

We've had some struggles with him in the main classroom, but it seems to have resolved itself for now. I'm trying to keep my head on straight. My DH has been much more helpful and supportive this year, and that has been a huge benefit to my son. I know marriages are often victims of Special Circumstances, and I am thankful that mine seems to get stronger, not more chaotic. So here's a shout out to the supportive Dads out there.

 

[C&G'sMama]

DDM - the coming home after school and getting it all out via music sounds great. Glad to hear DH is supportive.

DS has been going through 2 shirts at school everyday as he's been chewing all the time. So the school called and asked us to send in gum for him. We just reminded him not to swallow it.

The teacher is working with the team at school to get him what he needs academically. Next week he will go up to 3rd grade for reading and start getting the 2nd grade spelling words. He'll stay in 1st grade but they'll move him around for academics as needed. He is writing a book with another boy in his class. DS is the author and draws the outline of the pictures and the other boy colors in the pictures. This was something the 2 of them decided to do on their own and the fact that another kid wants to work him is positive to me.

We went for his placement into a group last night. We'll see how it goes. Last night's meeting was just a "get to know DS" to get a feel for where he'll be placed. I guess there are 2 types of groups. One is "plain old social skills" and the other is foundations. The SW said he'll most likely start in the foundations group and he will probably be with other children on the spectrum. There will be about 6 kids and 2 facilitators. Parents go in for the first 10 minutes on the first night but other than that we're in the waiting room. I didn't expect parents to be allowed in the group but I was hoping maybe they'd have one of those mirrors so we could observe. I guess we'll have to trust he'll be okay.


Hope everyone is doing well.

-A

 

[bookwormde]

C&G’sMama

Glad they are adapting the curriculum for his gifts, staying in grade and having the curriculum modified it typically the optimal system. If his chewing has increased markedly it is probably a good indications that his underlying anxiety levels are increasing so of course that needs monitoring by all. The cooperative skill sharing is really great.

Handing off to “professionals” is always difficult; I always try to get as good a feel for DS’s perceptions of how it went immediately after to see if any red flags come up.

Did an informational table at a neighboring districts mental health night, not to many parents by lots of teacher wanting information on Apsergers (amazing, or maybe not, that most had not district support of training to any significant extent from the district).

Bookwormde

 

[DisDreaminMom]

C&G's Mama, that's a great report! That's so wonderful that they are willing to move him around to get the appropriate level for him. Again, my green eyed monster wants your social skills class. But that's all really great. Even the fact that they asked you to try gum means to me that they are being practical and KIND in dealing with him.

 

[GraceLuvsWDW]

Hi everyone. We're back to reality. We had a mostly wonderful trip to WDW. Just got back last night.

I'll post some pictures when I'm not so tired.

Had a little difficulty with my dd being negative on our trip. I'm really seeing a difference in her from being one meds vs not being on them. She was more afraid to ride the rides and complained about the noises, crowds, and was a little more aggravated by the sensory overload.

On the plus side, we got the GAC that had the alternate entrance benefit so we avoided a few meltdowns in that regard. My dd doesn't quite understand why we used the handicap entrance. She then wanted to use the handicap bathrooms and board in the handicap boarding on the plane. Once she gets her mind connected one way, she tends to apply the rule across the board. I've had trouble explaining to her that she's not handicapped.

The Autism leader called me while we were away and we finally talked today. She asked a bunch or strange questions about my dd's "imaginary world". I don't find that even in the top 10 most notable manifestations she has so I don't know why that's applicable to academic placement? A lot of 6 year olds have a rich imaginary world. She was concerned my dd told her things that were made up. I told her trying to have a conversation with my dd about how she feels or what she thinks is difficult and what you get from her is mainly seemingly disassociated random thoughts. Talking about feelings doesn't interest my dd, she wants to talk about things instead. So, when asked if she likes school she answered that we have a special tree that we only water with salt water. Bizarre. Don't know where that even came from? And the Autism Leader (who must've just fell off the turnip truck yesterday) wanted to know if that's true. DUH.

Anyway, hope all is well with everyone. I went to the Autism Support Group and have mixed feelings about the experience. Most people there had children far more debilitated than my dd. Sometimes I wonder if she even is autistic, she seems so smart and capable sometimes. I've been giving a lot of thought to the things that I did (and am doing) right by her and the things that I have been so wrong on. Nurturing her and keeping a tight bond has really helped her imo, showing her that she can trust the world and constantly battling that monkey on her back telling her to be afraid, react, and shut down. And I've failed by being too hard on her when she does shut down and go into overload. I've overreacted to her baby talk and her overreactions to stimuli and under-reactions to fun things. Being a good parent is so hard sometimes and knowing what moments are the important ones and which are not so important is a constant struggle.

I guess you just take the good with the bad and try to focus and remember the good as much as possible.

Have we discussed the pros and cons of medications on here? I'm really doubting pulling my dd off all meds. She's definitely showing more anxiety and sensory sensitivity than on them and also more negative thinking. I've heard so much about how a lot of these meds have never been tested on children and that really scares me. Plus, changing brain chemistry at such a young age can't be good. But being happy and having an easier go at life is worth something too. But at what cost?

 

[bookwormde]

GraceLuvsWDW,

It is OK that your daughter had more anxiety (as long as it was manageable and she was still on a whole was enjoying herself), she is leaning skills and using accommodations and gaining experience with “dealing with” the world and making choices about how and when to interface with the more challenging aspects, this is one of the greatest benefits at WDW since it is an exceptionally enjoyable “place” for our children and we are available to give our children our undivided support and guidance as they move through this journey.

I hate to say it but it sounds like the Autism leader still subscribes to some archaic ideas about Autism/Aspergers, which probably means that you will have to “educate” her. Our children’s “theatrical presentation of their intellectual play” is what she is perceiving as an “imaginary world” which is code in the clinical community for other conditions.

Do not beat yourself up about the past (we all made mistakes in the past due to lack of knowledge, but not from lack of love and concern), your energy is much better spent on continuing to learn about Aspergers and supporting your daughter, there is nothing you have done in the past that has limited your child’s future potential (although it may have made your current job a little harder). Your love for her is one thing she could not do without and you have given her an abundance of that.

I have felt the same way about Autism support groups, but having used the opportunity to meet families with HFA/Aspergers children and find Aspergers support groups is valuable. As your “education” continues you will realize that the “classic model” of autism really comes from the overlaying of other factors onto the Austim genetics and while your daughter has the same genetics the lack of these complication factors and her exceptional intelligence make the genetics “work” in a advancing evolutionally perspective, once the conflicts with the current NT genetics social constructs and expectations are managed.

You have heard my thought on meds but I will offer my perspective on your situation. Yes your daughter is more anxious, but for the majority of the time she is happy and functioning effectively. You can see and communicate with her about what makes her anxious and adjust her environment to lessen the triggers, while she is learning the skills so that these triggers have less impact on her, this is much more difficult if her brain chemistry is being altered by medication. There are certainly children who for a limited period of time need the support of medication while their environment is being modified, their parents gain the knowledge and understanding about their child’s needs and skills are being enhanced, but unless your daughter is showing consistent maladaptive manifestations which rise to the level of being clinically damaging form the anxiety or the anxiety is interfering to an extent that she can not function and learn then the advantages of letting your daughter grow in her natural intellectual and perceptive state can not be overstated. Yes it is more difficult for her and a lot more difficult for you, but the reality is that through their life span even if it is the parents opinion that they should be medicated throughout that most spectrum individuals make the choice to abandon medications at some point and learning the level of skills and developing the experience of interfacing with the world non medicated is much more difficult later (even in the teens) and the results are always difficult, unfortunate and sometimes catastrophic.

It really sounds like, once you feel you fully understand them yourself it is time to start explain to your daughter what is to be the Autistic genotype with its challenges, gifts, abilities and wonder, so she can better use her intellect to make the adaptations and learn and apply the replacement intellectual skills while making informed choices about when and to what purpose she can effectively interface with the NT world. I know this sounds like a lot for a child of your daughter’s age but she has the intellectual capability and it makes her journey so much easier and accelerates the rate at which a child will make progress.

bookwormde

 

[GraceLuvsWDW]

Bookwormde,

Thanks for your reply. Your thoughts are always helpful. So when you say:

“imaginary world” which is code in the clinical community for other conditions

What other conditions do you mean? Do you think they are going to try to classify her as emotionally disturbed? I am really worried about this Eval. Our 60 day timer runs out on Oct 4th. I have not received any letter or notification from them that the evals are done or close to being done. It is my understanding they have 30 more days after Oct 4th to schedule the ARD meeting or decline services altogether. I wouldn't put it past them to use anything possible to get out of an Autism designation as I believe that is a mandatory IEP and not 504 (but I could be wrong on that).

Anyway, regarding the anxiety and maladaptive behavior, sometimes it feels like the negativity, crying, refusal, etc is more the norm than the exception in our home. Take this morning for instance, we have a procedure for everything and the morning procedure is to walk her to school into the library, hand her off to my neighbor who works in the library and then her teacher comes to get her 5 minutes after that. Well, this morning a schoolmate runs up to dd in front of school, excited to see her and say hi, my dd shrinks in fear, buries her face in my leg and I try to kindly tell the girl, go on without her. So we walk into school and the neighbor who works in the library is out sick and her teacher is in the library. This deviation from routine triggered meltdown and I had to carry her to counselor's office. Hopefully the counselor got her to class ok. I keep wondering: would meds make this easier for her? But I guess what you are saying is that she has to learn to adjust to these things on her own in due time. It's so hard when life is like a minefield and you are worried about one little thing going wrong or being different and then things are so hard. What breaks my heart the most is that all of her class watched her meltdown and were saying "what's wrong?" which just sets her up for ridicule and standing out later on.

Maybe that's just my NT perspective and she doesn't really care. Social acceptance is not of value to her yet.

Again, thanks for your persepective.

 

[KirstenB]

Bookwormde,

Thanks for your reply. Your thoughts are always helpful. So when you say:

“imaginary world” which is code in the clinical community for other conditions

What other conditions do you mean? Do you think they are going to try to classify her as emotionally disturbed? I am really worried about this Eval. Our 60 day timer runs out on Oct 4th. I have not received any letter or notification from them that the evals are done or close to being done. It is my understanding they have 30 more days after Oct 4th to schedule the ARD meeting or decline services altogether. I wouldn't put it past them to use anything possible to get out of an Autism designation as I believe that is a mandatory IEP and not 504 (but I could be wrong on that).

Anyway, regarding the anxiety and maladaptive behavior, sometimes it feels like the negativity, crying, refusal, etc is more the norm than the exception in our home. Take this morning for instance, we have a procedure for everything and the morning procedure is to walk her to school into the library, hand her off to my neighbor who works in the library and then her teacher comes to get her 5 minutes after that. Well, this morning a schoolmate runs up to dd in front of school, excited to see her and say hi, my dd shrinks in fear, buries her face in my leg and I try to kindly tell the girl, go on without her. So we walk into school and the neighbor who works in the library is out sick and her teacher is in the library. This deviation from routine triggered meltdown and I had to carry her to counselor's office. Hopefully the counselor got her to class ok. I keep wondering: would meds make this easier for her? But I guess what you are saying is that she has to learn to adjust to these things on her own in due time. It's so hard when life is like a minefield and you are worried about one little thing going wrong or being different and then things are so hard. What breaks my heart the most is that all of her class watched her meltdown and were saying "what's wrong?" which just sets her up for ridicule and standing out later on.

Maybe that's just my NT perspective and she doesn't really care. Social acceptance is not of value to her yet.

Again, thanks for your persepective.

Grace,
One thing stands out, that I may have a suggestion for. I understand your concerns about your daughter standing out, and possibly being teased or bullied. In our elementary school, the guidance counselor does "bullying" sessions on a frequent basis in each class. If there's a "special" child in the class, either she or the parent can speak to the class about the child and what's "tricky" for them. (Without the child being there of course, they'll have them go do an errand or go to the library).

Especially in the younger grades, like first, the children are so compassionate. They truly want to be helpers to their classmates. Zoe's in preschool now, but I fully intend to speak to her kindergarten class when she gets there. Just something simple, like pointing out some kids wear glasses, some kids need help tying their laces, etc. Zoe needs help with her "big feelings". She wants to be a friend, but sometimes it's tricky, and she needs some quiet time.

Anyway, I'm glad you guys had a good trip to WDW. Our trip in June was not so magical, so I'm always glad to hear when others on our board had a good time.

 

[bookwormde]

Back in the 40’s and 50’s it was “popular” to diagnose Aspergers children and adults who presented with theatrical presentation and were inwardly focused with a schizophrenia diagnoses and heavily medicate and institutionalize them, though as w know now there was actually “nothing wrong” with them they were just had EF difference.

It sound like the day you describe is not the norm so making adjustment and alternatives is what you and she can learn from her “meltdown”.

I would not say that she need to adjust to these things on her own but that much needs to be adjusted to meet her needs and that with lots of support and accommodations she will develop the skills to reasonably comfortably meets these challenges without medication and that with medicated there are both a quantitative and qualitative limitations to the progress she can make.

Yes it medications would make it “easier” on the school and in the most practical sense on you, but in the long run do not make it “easier” on the child except in the conditions that I talked about before and raising an Austism spectrum child is not about making it “easy” it is about maintain your child in a healthy state where progress can be made and her ongoing quality of life if good (although not typical).

It is hard to let go of the NT perspective (although I guess I really do not know what that is like) but is essential to parenting your daughter and understanding her exceptional gifts and embracing them without reservation.

We all struggle with what is the “right” course but talking with our children and understanding their world and what their needs and joys are (identified by them not the NT world) makes it a lot easier, although it is not always “comfortable” for us as parents.

It is very likely that “social acceptance” in a NT perspective will never be a value of hers but the components such as friendship, respect, and being valued for her abilities will be.

bookwormde

 

[DisDreaminMom]

Okey dokey. Here we go. Grace, so happy you had a fun time at WDW. We'll be heading down there in a couple of weeks for a boys' Pirates long weekend. Just my DSister and I and our two kids. I hope we have a great time. We got a Pirate room at CBR and I am ready to PARTY! (Whew, had to get that out of my system).

Don't have any advice for you on the meds thing. I do agree wholeheartedly with Bookwormde on all of the above. I just can't say it as well as he can.

But since I'm at least a year ahead of you in the kid department, I can say that a lot of the anxiety you are mentioning lessons considerably as your child becomes more accustomed to the routine and sensory input of school. It's something we've all been through. The old, "This, too, shall pass" business.

I had to work the other night and there was an ice cream social at the kids' school that my DH took them to. He said that DD's teacher pulled him aside and said that she was so grateful that my daughter was in her class this year because she has an Aspie in her class. Quote told to me was, "I hate to lay all the responsibility on your daughter to help this boy, but she does such a good job helping him get through the day that I don't know what I'd do without her." Then we got a letter from school saying they picked DD to be in a special group called Students Against Peer Exclusion. I'm guessing that's no coincidence, eh?

And just for those of you who might have had a rough day, I'll end with a funny. I was taking the kids to the barn so we could ride the pony and care for the horses. DS wanted to take his Cornet with him to the barn. I said, "That's not such a good idea, but if you must, then stay in the car with it."

His reply: "Yeah, that's a good idea. I wouldn't want my brass to get dirty."

Anyone else live their own version of the Big Bang Theory?

 

[bookwormde]

DisDreamMom,

Yes we have the children’s version, lots of aspie perspective and comments (oh I guess DW would say we have an adult version also).

It is so neat to hear about the specialness of other parent’s children and to see the developments of their gifts and the indications of what a positive difference they will make in their world.

Of course then there is one of those “oh boy not again moments” but on balance I would not trade it for anything.

Have fun at WDW I am really stating to doubt that I am doing to make it through my WDW drought with my 2 out of 3 years schedule.

bookwormde

 

[saveaquarter]

Anyone else live their own version of the Big Bang Theory?

Oh you have no idea. None at all. J is Sheldon from his speech pattern, gestures, posture, wardrobe, to his propensity for video games, comic books, and other nerdy things. We've seriously considered sending letters or emails to the writing team with ideas for scenarios to put Sheldon in, and constantly joke about our need for a sarcasm sign.

Perfect example. Yesterday I made a cake, and I had a piece for dessert last night. It didn't agree with me at all, unfortunately. After the third or fourth trip to the bathroom I said, "I think I might have frosted that with laxatives by mistake." I don't think I could have confused J more, he took me absolutely seriously, "How could you possibly mistake laxatives for frosting?" He went so far as to theorize I'd melted chocolate myself and mixed up the frosting and somehow spilled some sort of laxative into it in the process. It took about 20 minutes to explain to him that it's a joke, the absurdity of mistaking frosting for laxatives is what makes it funny.

Needless to say, it's our favorite show. And J watches it from Sheldon's perspective, and tends to laugh at completely different jokes than the rest of us do. There has to be an aspie on the writing staff. We have our theories about Jim Parsons as well.

On another messageboard, not too long ago, in a topic on The Big Bang Theory, I mentioned exactly how similar my husband is to Sheldon. Someone replied saying "he can't possibly be exactly like Sheldon if you enjoy his company". Three or four people immediately jumped in with defenses for that, of course, and stories about their own Sheldons.

Also, J and I have started blogs. Mostly about life in general, but also about our experience as related to both his asperger's and his multiple sclerosis. I keep meaning to add a link in my signature. If anyone is interested in how another adult aspie views the world, I'm more than happy to give a link.

 

[GraceLuvsWDW]

If anyone is interested in how another adult aspie views the world, I'm more than happy to give a link.

I'm interested!

 

[C&G'sMama]

Re: Big Bang Theory

DS -"Mama... Mama... Mama.. Mama... Mommy..., Mommy..., Mommy..., Mommy.."

reminiscent of Leonard... Leonard... Leonard...Leonard...

 

[GraceLuvsWDW]

I have never seen this show Big Bang you guys are referring to. I guess I'll have to check it out!

I like to watch Bones and House. While they are probably not true respresentations of Asperger's or Autism I love Bones' personality (I'm a fact-based person too!) and it's interesting to watch House deal with his lack of people skills. Of course, in the "real world" he'd already be fired several times over!

Yikes! Schizophrenia dx scares me to death! Hopefully they won't go THAT far. Impatiently waiting for the refusal of services or report on their Evals. The 60 days is up Sunday. Does that mean they have to notify me by then? Does anyonne know?

 

[BeckyScott]

quick question-

Oldest DS is with the class-within-a-class group at school (IEP is OHI for ADHD). Because of a schedule conflict, he ended up in the math class that isn't the CWC class. But he has a study-hall kinda thing first hour where he is with other IEP'd kids and they get tutoring. Supposedly.

They couldn't put him in the "special" math class because we had to keep LRE and he doesn't have any history of needing "special" math. (keep in mind he was in elementary last year, and this year in middle school, and that by their testing, he is not LD in math)

Okay, so far he's brought home about 3 graded papers, and he's flunked or close to flunked all of them. (insert the "I told you so" smiley here)

So, hmm, exactly how long do I wait before I request an IEP meeting to deal with this? How long would you wait? I don't want to jump the gun on it, but it seems like things aren't going so swell.

 

[bookwormde]

60 days or what ever your state has adopted (there is some variance form state to state my state it 45 school days or 90 calendar days until meeting to determine eligibility). The school is supposed to provide you with a copy of any of the pieces of the evaluation as they become available for your review.

Here is a link to the federal DOE info in this area.

http://idea.ed.gov/explore/view/p/,root,dynamic,TopicalBrief,4,

bookwormde

 

[bookwormde]

BeckyScott

Is the “special” math class 100% IEP designated children. If not they can place him in it as a regular Ed placement. I give the ED one chance to meet with me (within 2-3 days) and to come up with a solution, if not I call and IEP meeting (it is interesting how in many schools once you make the formal request for an IEP meeting all sort of alternative possibilities are found)

Oh yes he does not have to be LD (he could actually be on grade level but just not meeting his potential) for math to qualify, just that his base disability characteristic (say EF issues) creates a need for different structure (special math class) for him to receive an appropriate education

bookwormde