Behavior Challenge Thread

[GraceLuvsWDW]

Hi everyone. I wanted to let you know that I received two emails yestreday from the people who were on the trip with me at Disney. Evidently they had gotten on these boards (I have mentioned the DIS many times to them) and somehow-I'm still not quite sure HOW they did it (Must've searched by my UserName but how they knew what that was? I don't know). Anyway they found all these rants/vents by me. They sent me emails to apologize if they did anything to ruin the trip or if they said anything insensitive. I guess that turned out ok. So everything was fine...


Then, last night I started to think about what they must've done to find these threads. I went on last night and searched by my UserName and these posts are at the very bottom of page 1 and on page 2. So they would've had to take the time to read 15+ posts before they got to these and I'm not quite sure what the point of that was?

Anyway, I'm feeling a little invaded. So I'm going to sign off on this board for a while and go to a private board to vent. I am very sad that I feel that I need to do this, I keep thinking well if I feel the need to vent and someone has the motivation to lurk/read these threads well that's their problem. But I feel kindof violated. I might just start a new UserName and sign on in the future. And I'll lurk and read what you guys are up to. But for now: Good bye and good luck to you!

 

[DisDreaminMom]

OK, GraceluvsWDW, that is kind of strange, but I guess they were trying to be nice.

We had a "Grace" day at Space Center Monday. It was not that fun. The ride home was 4 NT's and one Aspie in meltdown mode. Let me repeat. Not fun. Yesterday we saw a movie (Up, again..love it!) and today everyone else is going to Space Center and DS and I are at condo. He is just over stimulated. Honestly, so am I. So I get time to relax and clean up and get ready to go back to WDW for the weekend.

DS was having new and wonderful annoyingness. Fart sounds on arm all day, melting a lot, etc. Space Center was sort of hard to wheelchair it a lot. They had free chairs at every complex but the tour had lots of bus stops. All the concrete and no vegetation like WDW made it extra hot. It was pretty interesting, though. I enjoyed it. I'm sure if DS was perseverating on space it would have been the best thing ever.

So let's see: decent behavior at WDW, a pain in the butt everywhere else.

DH bought DS a violin at a yard sale while we are gone. So much fun to look forward to when I get home!

 

[KirstenB]

GraceLuvsWDW, at least they were interested in learning more about your experiences and how you felt. Some people find it really hard to ask about complicated disorders, especially sensory-related ones. Maybe they truly were seeking to understand, not be invasive. If I'm being too Polyanna-esque, feel free to give me a virtual smackdown! Take care

 

[C&G'sMama]

Tonight was our last Lego Play group until the fall. The organizers were very pleased with how it went and are going to do it again this summer and hopefully the fall. We are not doing summer as we are trying to keep evenings free. We traded numbers with one of the other moms as G and her son get along quite well. The poor mother must think I'm a nut job as I practically cried. G is already planning the play date.

Then I get home and DP tells me what happened on the play ground today. Teacher talked to DP. A group of kids refused to let G play with them and were quite nasty. They did get in trouble and the one of the kids has been less than nice to him before. It makes me so sad because I know he can be difficult to deal with and sometimes the other kids probably don't want to be around him. We are asking that the school work on some kind of social skills with him and some of the other children. Quite frankly, it wouldn't hurt some of them either.

It breaks my heart. But then we have the Lego experience. And he's happy.

 

[C&G'sMama]

I miss you around here. Where are you?

 

[pudge the fish]

Graceluvswdw- to you too-

it is too hot around here- DD & hubby went to Epcot Wednesday for her B-day - I had to work- saving vaca days so I can take time off in Nov. for a wedding. I was sad at first but then was thrilled to have some alone time.

Hubby said DD only had 1 issue this trip so that was good- then I got told how she pushes my buttons and thats why we have issues- I said yes but I make her eat a real lunch and you give her chocolate mousse from france for lunch and grab a hot dog later- of course she has more fun with him- I am the rule maker and make her clean her room etc.

The space center is super hot with all that concrete-no shade- I remember the days when it was mostly free except the bus tour- used to be a cheap trip -pack a lunch and have a picnic & see the moon rocks

to all -

 

[DisDreaminMom]

OK, I'm back! Getting caught up and wondering the same thing as C & G's Mama. Where is Churchlady????

So we went back to WDW after a week at the beach. I'm loving the view from the condo at the beach, but not really the beach itself. Anyway, back to Wilderness Lodge for a couple of nights then to Contemporary for one last night. Must say that I used the wheelchair the entire time and it was great. We were able to do so much more and stayed going longer than we have ever been able to do before. I hate to say it, but I didn't realize how much DS "slows" the whole day down.

Without boring you all with the details, I must say that the last night we were there we went to DHS and came back to the TTC (ticket and transportation center) and I started talking to the Cast Member about how excited we were to stay our ONE night at Contemporary and be able to go home the last night right into the hotel on the monorail. Bless him, he let us sit up from with the Conductor. It was so cool! I thought my kids were going to have a stroke.

We had a magical vacation and a great time and now I am going to sleep for DAYS! I have been up now for about about 30 hours with a 4 hour cat nap this morning after we got home. I drove about 14 hours, too.

I am wondering about trying to make a Lego playgroup, too. Some kind of social skills group for DS. When we were at CBR, there was the sweetest family with 3 kids. The youngest, a girl, was maybe 5. She was cute and blond and spunky. She and DS started playing together at the pool and they had so much fun. We sat across from them on the bus the next AM and DS had fun playing with her, too. SHe was a doll. I was worried about DS playing too hard, and apparently the other mom was worried about her girl being hard, too! It was really cute. Nice to have compatible playmates.

At Biergarten we were seated next to a super sweet family from IL with an 11 year old son that played the saxaphone. My kids had the best time playing and talking to that family. They were super nice people. The 11 year old never batted an eye when DS was talking about music and all the other strange things he talks about. Then DS went down and danced by himself in the "mosh pit" of kids at the stage. He was rocking out!

And a band at a bar in Cocoa Beach let him play the egg shakers for two songs. I thought he was going to die of happiness. He told me later, "Mom, I know I was just playing the egg shakers, but my heart wanted to play the electric guitar!".

 

[koolaidmoms]

I love reading about your trip DDM but what made me happier was reading about your son.

As the end of the school year approaches DS is acting out and struggling with the other kids at school. He is chewing his shirts constantly now (we believe a stress reliever) and comes home soaked. The kids on the playground don't want anything to do with him because he doesn't understand they don't "play" like he does. All he knows it the teacher told them they were all "friends" so they should play with him.

I am the one who was hesitant about the Lego group but I can see that he is really happy that there is one kid there who really gets him and now he can have a play date like sister, who is super social and always has a large group of friends around. It is as simple as getting a bunch of those little lego sets - cars, boats, pirates, My Pretty Ponies for girls breaking them up into groups of 2 having one be the engineer and one be the builder. After 3 or 4 steps they switch places the engineer, finding the pieces that are needed and tellling the builder where to put them and the builder putting it together.

We try to help him make friends in all different parts of his life but it is still hard to see him hurt and struggling with this.

 

[C&G'sMama]

Thanks for touching base with us. I'm so glad it went well for you. I started tearing up when you talked about your DS finding playmates. We found the same thing with our DS in the Stroller that we could go longer. But it was better for everyone. I bet your DD had a better time than usual and you probably did too. I know we did. and DS had a great time so it was a win-win for everyone.

 

[BeckyScott]

Sorry guys, I've been kinda MIA the past week. When the kids are home, it's a battle to get a turn on the computer!

The newest adventure- oldest DS came home from summer school Tuesday with 4 or 5 spots on his arm. Hmmm. DH had a dr appt that afternoon so he took DS along with him. Guesses, anyone?

He has chicken pox. And yes he was vaccinated and it's pretty mild and the dr said that she's seen it happen quite a bit in the past few weeks. By Wednesday morning he had spots all over. He's not too itchy, though, and he feels fine, he just looks a mess.

I do not know if youngest DS had the pox vaccine or not, as he has had no immunizations after the 18 month ones, which was roughly the same time as his diagnosis. (I have had to explain this to a whole bunch of people, why, I will assume you guys know why) Anyway, so far so good although the incubation time is such that it might not be showing up yet. And his eczema is pretty flared, so if he doesn't get them too bad, I might not even notice.

We're just all sort of a mess right now. My UC is flared, youngest DS's eczema is flared, DH has heartburn or an ulcer or something going on, and oldest DS has "chicken pops". It's like a festival of inflammatory-ness. Ugh. I need more than a Dole Whip.

 

[GraceLuvsWDW]

Hi all!

I struggled to find a new dr for my dd6 who was regressing after I weaned her from her Paxil, Her OT was extremely concerned about the regression apparent in her OT session this past week. I had found a neuropsychologist that is on staff at UT Health Science Center in San Antonio and although she was doing research work and not seeing patients I urged (begged really) her to see my dd. She agreed. I had our first appt yesterday and we did an extensive interview, I completed 6 extensive Scales on my dd. The ones that really stood out were deficits in Executive Function (I swear this assessment was written about my dd!) and the GADS (Asperger's Scale). She mentioned NonVerbal Learning Disorder as a possibility. We are going to start the battery of neuro, IQ, fine and motor skills and behavior assessments in 3 weeks and will have a minimum of 3 two hour sessions.

She was concerned (but not surprised) at the previous (lack of) substantial testing done and the previous dxs applied to my dd without the follow though of substantiation she said should be required. I am feeling quite good about her level of expertise and in finally getting some answers.

Anyway, I wanted to post here because Bookwormde can probably help me in pointing me towards books or research sites regarding these issues? I appreciate all the input all of you can give. I feel I am finally on the road to untangling this mess of misdiagnoses and unhelpful treatment. She validated me in the fact that these kids cannot be disciplined in the same way NT kiddos are, what you guys have been saying and what I've been frustrated with all along. She was sympathetic about the drs who have been advising me on standard behavior modification techniques that she said were just not appropriate for my dd.

She told me that she will complete the assessments that will be honored by my dd's school in obtaining the 504 or IEP and that they would not be able to take a "wait and see" approach after receiving the materials and reports from her.

Ahhhhhhh, big sigh of relief. Feel a little better about being in good hands and being on the road to understanding and therefore addressing my dd's issues more appropriately!

Any words of advice or comments are greatly appreciated! Hope you are all doing well!!!!

 

[C&G'sMama]

Way to go mom!

You are doing an awesome job. Good for you for being persistent with the Dr and so gald she agreed to see DD. It's amazing the strength we can summon within ourselves to help our kids.

Keep us all posted.

 

[Piper]

Good for you!! It sounds like you have found someone who actually knows what they are doing!!!

 

[semo233]

She validated me in the fact that these kids cannot be disciplined in the same way NT kiddos are, what you guys have been saying and what I've been frustrated with all along.

GraceLuvsWDW: I've been lurking on this thread for a while now, just reading the view from the other side....I am a behavior therapist and get looks from parents visiting our school all the time while I am working with kids in the hallway or in classrooms with visiting parents. They have NO idea what you're dealing with. I get to go home after 6.5 hours with kids. I have several parents with more than one child on the spectrum and with different disabilities. I worry about many of them.
Please know that kind thoughts, prayers and any pixie dust I have are being sent your way

 

[pudge the fish]

GraceluvsWDW YAY! I am SOO Glad you found someone to help! sometimes it just takes a while to find the right person!

I am glad you did not leave us as you thought you were going to.


Oh my word- Chicken pops... I had a bad experience with chicken pops after DD got her anti -chicken pops shot- I broke out in chicken pops.. and I had them as a child- you can get them again and it wasn't shingles..( according to Dr.anyways

I LOVE riding up front of the monorail- but DD gets green and we have to bypass it for now. ( just ask next time and if it's available( like 40 people aren't ahead of you) and the conductor allows it - they will let you ride up front.)

Hot.. Did I mention it is HOT around here? I am up to 2 showers a day
it's 96 in the shade and feels like 105 and we are going to DTD tomorrow for Dad's day.. out comes my floppy hat and much shame to my family- MOMMMMMMM Do you HAVEEEEE to wear the mickey FLOPPPPY HAT?
translated : do we have to be seen with mom who has no shame in wearing floppy straw Mickey hat??
Yep I do it on purpose..

with summer here and totally watching DD's diet & things have gotten better with meltdowns from being tired or low Blood sugar-
the school is totally on board for next year and she has time to eat a small snack as lunch will be later next year. the Doctor still wan't happy with tests and wants to re- do them in a week-
I am SOO looking forward to blood tests with her again

Everyone have a great weekend and stay cool-

 

[bookwormde]

GraceluvsWDW,

I can understand that you are a little concerned that your friends read your (and our) posts about Grace. I try to look on the positive side and hopefully it is an indication that they are “true friends” and are just trying to understand your situation. If they read some of the AS treads they hopefully have learned that their lack of understanding really was damaging and have begun to gain an appreciation of how special your child is even with the challenges she faces and that neurotypical practices just do not work in the long run. I am glad that you have continued posting.

Great news that you were able to find a clinician who seams to be exceptionally competent. I would love if you could share any info on the EF assessment that they used (name and were a copy is available from) since I have never been able to find a good assessment to recommend that was specifically for EF. One thing to remember is that with EF it is more of a differential than an deficit which is a big part of her “gift”, it is just that the world is designed for a standard linear EF system.

As long as the regression was not speech related I would not worry about it to much, as she comes off Paxil natural anxiety levels will rise some what so there will be some natural “hesitancy”. This will subside as long as other factors do not excessively heighten anxiety.

I would love to tell you that there is a good single of group of books or websites, which have comprehensive and up to date information, but there is not. Atwood is the best starting place but “detective work” is needed to find the most current information.

Remember to Quiz the Neuro and her staff as to the best other clinicians in your area and any other support programs.

I know I only have a superficial understanding of your daughter from your posts, but I am quite certain that she is a very special child with amazing spirit and gifts and now that you are hopefully on the road with a competent clinician to understand her needs and get her the most appropriate supports that you will be amazed at the progress she will make and her special gifts as they become more apparent. This is not to say that there will not be lots of challenges but you will understand why “nature” came up with AS genetics as your child grows and learns how to share her gifts. I think you may have a child that has the potential to have and impact on the world well beyond the average child.

Congratulations

bookwormde

 

[GraceLuvsWDW]

I have the EF Assessment copy at home, I'll post the name of it when I get access to it.

I guess I was a little upset about them reading my posts because I was using this thread to "vent" to you guys who I feel understand what it's like to be/have a NT child. While they have been very understanding since the trip and reading my posts, I guess I just needed some time to get over feeling a bit invaded by their reading my private (haha not really if it's on the internet!) thoughts.

I do feel the neuropsych I found is quite competent. Although I have felt that way before with our Dev Pedi, etc. So I always walk into these with my eyes open and careful not to just bite off whatever they serve me as an explanation. This neuropsych was very careful in asking me "What do you want/need from an evaluation?" and I said "I want to know what the true issues are so I can approach my dd in the way that helps her best" She was careful to tell me that the territory we are in is not "black and white" or if it is we don't have the knowledge and understanding yet to know where the lines are. She stated each child has their own distinct, unique presentation of variancies that don't necessarily "add up" to one THING. And she says it changes over time.

Your last paragraph Bookwormde I know is so true. And also semo233 I appreciate you posting that you can understand how hard it must be to parent these unique children. As I have stated before my dd seems so far from enjoying life and being happy that it is a constant weight on my shoulders and heart. Moment to moment, my dd struggles through life in an obviously painful way. She doesn't want to wake up in the morning, then she doesn't want to get out of bed, then she doesn't want to get dressed, then she doesn't want to brush her teeth, then she doesn't want to eat breakfast, and on and on and on and on throughout the day. I don't know how to make things feel "safe" for her or have her be excited and happy about something. She has two modes: crying, irritable, mad or exuberant, crashing into things, unable to focus, manic. I NEED more than anything in this world to find a medium level, to help her feel good in her own skin. If the neuropsych can say "these are her areas of variancy" and "this is how I recommend you approach these behaviors" then perhaps that will help me.

What hasn't helped are all the well meaning people, therapists, pediatricians, teachers, etc that have said "just do XXXXXX" (insert: spank, hold her down, put her in her room, be more consistent, etc, etc).

The regression is happening, for certain. It's not speech related, it's more emotional volitility and anxiety related. I do have to concede the Paxil obviously WAS helping in those areas and we may have to go back on it once the evals are done (her OT is practically mortified that I weaned her from it). I hate to medicate her still developing brain!

Also, still reading the Attwood book.

Anyway, thanks all for your comments, support and concern. Where's mechurchlady? She's been missing here for a while. Hope she's ok.

You'll also note a Disney cruise in my siggie that I booked that's 18 months away. First cruise. Can't wait. Although my dd can't really grasp the concept (it's a tough one to grasp!). She keeps asking "will there be a roof over our head on the boat?" and "how do we get food?" and she's not quite sure what "Bahamas" means but I've got 18 months to get her ready. Don't want to put too much on her right now while we are dealing with all the regression, testing, etc.

 

[KirstenB]

Grace Luvs WDW, It's good to hear from you again. I feel like we have a great group here, very supportive, and I'm glad you returned.

Becky Scott, I hope you guys are all feeling better by the time you see this.

Hugs to all,
Kirsten

 

[GraceLuvsWDW]

GraceluvsWDW,
I would love if you could share any info on the EF assessment that they used (name and were a copy is available from) since I have never been able to find a good assessment to recommend that was specifically for EF.

bookwormde

The assessment is the BRIEF Behavior Rating Inventory of Executive Function
done by Psychological Assessment Resources Inc.
www.parinc.com

My dd scored more o's (oftens) on this assessment than any other.

Questions such as:

Overreacts to small problems
Becomes upset with new situations
Has explosive outbursts
Disturbed by change in plans
Distracted by Noises Activities Lights
Becomes Tearful easily
Resists change of routines
Mood changes frequently
Poor Handwriting
Forgets what they're doing
Unaware how behavior affects others
Acts wilder than others in groups
Thinks too much about same topic
Interrupts
Does not notice negative reactions
Gets out of control more than others
Reacts more strongly than other children
Blurts things out
Acts wild or out of control
Silly
Sloppy Work
Small events trigger big reactions
talks at inappropriate times
Trouble waiting for turn
Fidgety
Impulsive
Says same thing over and over


among several others.

 

[bookwormde]

Thanks for the link, It looks like it is limited to the reactive, social impacts of EF. At your daughters age it is a good tool, I looked at the other versions and there is not enough info to see if they get into the intellectual processing, hyperfocus and filtering areas, I will call them since these are the biggest “clues” in older individuals to see if they have included these.

Thanks again, leads like this are very helpful.



bookwormde