Behavior Challenge Thread

[BeckyScott]

I'm not a very good photographer either. That's sort of why I like scrapbooking, because I can take a pic that is a little "off" and crop it and make it look like I know what I'm doing.

C&G

One thing that happened on this trip and I can't remember if koolaidmoms posted this here or on her blog. I looked at her and said I realize he is "different".

DH really noticed this for the first time when we were at Disney. I think a lot of it is school, we're not there with DS, and on the weekends we don't go anywhere too much. I mean, like you, we'd noticed it before, it was just at Disney that it seemed so much more obvious. And they are still the best at making you feel like everyone else, which they did, it's just that in doing so, hmmm... how to explain.... I think the GAC had a lot to do with it, that we were treated differently because of that. Better, but different. Or that we weren't trying to blend in, therefore it was more obvious. Or maybe it was just being around him 24/7 for 10 days in that particular situation.

But there is something pretty nice about being able to just let go and not worry about it.

 

[DisDreaminMom]

Let's see. First, Mechurchlady, hope you feel better. You did a very nice thing for Mother's Day and lot's of effort was made by you. Hat's off to you. You are a loving daughter who takes good care or her mom.

Saveaquarter, you and your DH are so interesting. Love his pictures. They are special. What is it with ASD people and cats? I think cats are autistic dogs.

Pudge, will try the dip. Sounds yummy. I think there might be a super good deal for a room in the main building of the Contemporary during the second visit. If I can swing it, I might try to book it. The whole monorail thing is so awesome. I know it's not everyone's deal, but even I get jazzed up from that concept.

Becky and C&G's Mama and koolaidmom's: I think we all do the "he's not normal" thing. But I must also point out that there has been more than one occasion where I have been at WDW and thought, "All these little NT kids are so strange compared to my kid. He's the best behaved kid in the room. I'm so proud." (Then he alternately melts and begins pulling on my arm in the longest line ever and I remember how much I want to run screaming from the room sometimes!)

For further explanation, I would like to relate the story of our old horse Babu. He was my husband's horse, but I picked him out of a field of yearlings and I loved him dearly. Anyway, Babu was a total pain in the a@$ when we rode him at home. He snorted and spooked at every little thing. He was so hot and bothered all the time. Sometimes it was not that much fun to be around him, even though he was gorgeous and very sweet. Anyway, at his first horse show, he surprised us all by being so quiet, even when scary stuff happened. He never refused a fence, he always did his job and was super focused- but only when all hell was breaking loose. That horse won all kinds of stuff and we sold him later and that's another story. But I have to admit, sometimes DS has total Babu moments where I go, "How can I be this lucky?"

And that's why I like going to WDW.

P.S. I am totally jealous of the Lego group. If I were more of a go-getter, I would be smart and organize something like that. You'd think there are no ASD kids in the city. A smarter, more organized person would take it upon herself to make something cool like this happen, wouldn't she?

P.P.S. I saw Chris Pine, the guy who plays Capt. Kirk, on Jimmy Kimmel, and in real life he does not have those dreamy blue eyes. I feel cheated, but I appreciate CGI.

 

[clori]

I just wanted to update regarding my dd who is now 9. I had a meeting at dd's school yesterday with the school adjustment counselor, teacher and the city's school psychiatrist (consultant). DD wasn't at the meeting.

Basically the belief is that dd probably has ocd/anxiety. There is a question about sensory stuff and I need to write a written request to the school for an ot evaluation. I have an appointment coming up the middle of June for a more thorough eval of sorts on dd at a city hospital with an intake team. The meeting lasts about 4 hours. It is a bit tricky due to things like locations, changes being made in local health organizations etc. The school psychiatrist consult however works for the same organization and is supposed to be starting up a clinic in my own city so she will tell the intake team she wants to see dd locally. Her quick opinion is that dd will benefit from counseling and meds but neither alone.

The medications she mentioned are celaxa, zoloft, paxil, and prozac as possibilities. I quick glance at them shows increased suicide as a risk associated with all of them. I'm really worried about that.

Honestly right now I just feel like a failure as a mother and just wish I had a happy child.

 

[bookwormde]

Clori,

I am sorry but I could not find your original post(s) about your daughter, if you can link them or give a review if the situation if would be helpful if you are still looking for “ideas”

Unfortunately virtually all psychiatrists are not properly trained for sensory and other neurovaritions, they are trained in the “disease model” which is very often inappropriate for our children and the treatments involved are often only effective in a transient manner and are actually damaging in the long run.

When you say your local hospital is doing an “intake evaluation” is this a psychiatric evaluation or a developmental evaluation? For sensory issues a developmental evaluation is what is needed since the anxiety and OCD are common maladaptive manifestations of sensory issues (which have not been properly evaluated for and proper accommodating made which if you do not get to the core causes you will just be chasing manifestations symptoms for years to little gain.

Also has your school done a full IDEA evaluation for your child, to see if any variations or disabilities are involved? If not you are much better doing this all a once in stead of letting them do small pieces like OT only to find out later that there were other issues impacting the situation.

Good luck

bookwormde

 

[mechurchlady]

Epiphany was taht I have spent so much collecting real stuff instead of memories.

I was thinking what I would do if I won a million dollars. The idea of planning a trip, paying taxes, new car, insurance forms, tax forms, hiding from the pastor, divying up the money to charity, will, etc sent me into total chaos, omg, too much to think of. Glad I am not ridh, lol.

Midnight snack was that vanilla raspberry ice cream with chocolate ganache. There was a little left for one serving so last night she got that and I ate out of the carton a frozen vanilla cupcake so mom would not know. I love them cupcakes frozen but it was love for my big kid that I sat there hiding the cupcake so she would think I had ice cream.

I am waiting to see if ?I will go to DCA for my birthday on the 23rd with Calvin as a Halloween event is that day. Should be safe and sane with no riff raff unlike memories of outher parks, eek. the 24th will see me with big thunder dinner, goofy's kitchen for late breakfast and probably taste pilot's grill in between. I plan to be there from the 22 through the 25th probably. I want to save up for then. On the day after my birthday maybe lunch at Storyteller's or Blue Bayou. So many plans ot make. I need to get the fan on the computer working and the E drive up.


Big hugs for everyone and trip hugs for BEcky.

I am better for now but you know me and food.

Laurie

 

[mechurchlady]

That was too depressing so how about some good news.

My wrist is calmed down so I was looking at refreshing this site's page for new stuff or playing online games that would fry my brain and aggravate the wrist. I just got up and went into the living room. I got mom her grapes and mail then moved the heater to storage. I took the laundry out and started a load. I cleaned the top of the washer then washed my hair before starting the laundry.

I think it was like there was no resistance there, no fears of failure or what ever and it was like I was saying to myself hmm laundry and just went and did it.

We will have to come up with about $500 in taxes at the end of the year unless postponement comes back but that is a long way off and we owe nothing on the taxes right now. HAPPY DANCING.


Report in please, how is everyone doing and any new steps or challenges?

Hugs and Dole Whips
Laurie

 

[pudge the fish]

i got grumpy again today- forgot my meds and didn't eat enough- I am rotten and miserable when this happens.


DD's room has totally exploded stuff. I told her that is it wasn't clean then I was going to drag a trash can in and throw everything away...

lots of door slams and screeching- I reminded her that we are leaving early for the Mouse and she had still 3 poker chips and I would be nice and add 2 more so she could get a special pin.

Bribery is not working- room is still exploded and i need to stick to my guns and NOT buy her a pin.
daddy caves in all the time and will end up buying her one-

anyways I will report back as to my day trip. 50% chance of rain- thunderstorm. I hope it holds off. I always feel bad for those who spend lots to visit and it rains on them- I can just go back for a 1/2 tank of gas round trip.

 

[mechurchlady]

Pudge big hugs and please go eat something like a peanut butter sandwich.

Big hugs for you and lots of snugs and prayers and hopes for you to have a good time.

hugs
Laurie

Waves to sue, I am going to nap now, honest.

 

[Earstou]

I was so excited last weekend. My ds was invited out with friends, something which hasn't happened in years! He mentioned that he wanted to see the new Star Trek movie, and found out some of his friends are trekkies.
(They are fans, but not to the point of going to conventions or wearing costumes. My ds had been afraid to admit he was a ST junkie because he didn't want to be called a nerd.)

So they went to see the movie Saturday. I drove them home, and they were talking about going to another movie this coming weekend.

Yay, my aspie ds CAN have a social life!!!!!!!

 

[C&G'sMama]

Okay, how's everyone doin'? I'm assuming busy I should be making lunches right now and getting off to work. I wanted to sneak in a few minutes to post.

We had the 3rd LEGO playgroup last night. G loves it. For me it is very interesting to watch all of the children. When your kid has a melt down it's kind of normal and everyone just goes about their business while mom or dad deals with it. It's fun watching the kids go up to people and introduce themselves. My own son looked at me at one point and said "Remember Mama, eye contact?". Apparently I had not been looking at him when we were talking. One of the dad's was working with DS and his daughter on building a pirate raft. At one point when G said "I can't do it" The dad looks at him and says "G, do you know who says can't" G: "Who" the dad "The other guy" G: "what other guy?, and he starts naming off other kids in the group" I looked at dad and said "Fun with Aspies" He laughed, as the concept of the "other guy" had been totally lost on G.

Oh well off to make lunches and get to work.

 

[BeckyScott]

Well we have officially made it through another school year.

I am breathing a big sigh of relief.

Yesterday was a hard day. The kids had an assembly in the morning and DS had a melt-down during it, although it was short-lived.

They do a big thing for the 5th graders and it is a full-blown weep-fest. You had to be there. I knew it was coming so I held myself together pretty well.

We have a week off, then 2 weeks of summer school. I have absolutely no plan for the summer. I guess maybe I should try to get something figured out.

 

[bookwormde]

Work is a little slow but that is not all bad, DS has started a “tweens” (9-12YO) game night group. DW took him last month and I am taking him tonight. Typically parents do not stay but you know me I am going to ask if I can stay to observe the facilitator.

School is winding down and almost all the planning for our WDW trip in June is done (still waiting for SW to release their June hours). I am starting a pre trip report which a hope to use as an ongoing trip report if the laptop behaves. We are continuing our “transitions” program that we worked on last year, but since 8 days of our trip are a GG we are adding a “hosting” component. I am planning on having DS finish the “mind reading” TOM program from Cambridge this summer along with seeing if he had any interest in the new goggle spectrum design graphics program that goggle has made available on line. Of course much of that depends on how busy work gets this summer.

I am in the final stages of setting up a new Aserpgers support group (the old one “faded any”) I have broadened out both who might participate (parents and guardians, individuals on the spectrum, clinicians and educators) and the mandate to not only be support but also some advocacy to try to maintain a “critical mass”.

I also retrieved my PW to Wrong Planet, so I am back in the “wild west” of Aspergers forums (needed to post about the support group so that was the impedes).

Heading for the Philly on next Friday with DS’s class to do all the historical sites.

All in all DS is doing pretty good, but as you should expect he has his “moments” but for the most part they are transitory and most of the time are opportunity for a “learning moment”. I cannot believe he will be in 5th grade next year!

bookwormde

 

[GraceLuvsWDW]

Hi All,

I thought I'd join you guys here as I have a DD5 (Will be six on June 4) who has neurological issues and I've corresponded on other threads with some of you here.
This week I fired my DD's Child Psych and cancelled an appt with her Dev Pedi. I was getting too much conflicting information from these and they were not helpful. Firing them made me feel better and I am feeling stronger about being an advocate and not just taking everyone's mandate as truth. I had a conference with her OT which was VERY informative. She referred us to a Pedi Neurologist for EEG and MRI to rule out seizures and referred us to an Allergist to rule out allergies. Then we are going to start with aggressive sensory therapy to try to curb my DD's behavioral issues. The OT believes my DD's issues are due to a Sensory Modulation Disorder (She has been diagnosed with Dev Coord Disorder, Anxiety Disorder and Sensory Processing Disorder). Upon reading about the Modulation, I am very hopeful because it does have striking resemblance to my DD.
Speaking of dealing with the end of school, my DD is in Kinder and she has been so emotional and especially chaotic this week. I am sure it is due to her not being able to fully comprehend the charges in the class routine (they're doing all kinds of parties this week).
I asked the OT about seeing a DAN Dr and she said she doesn't recommend it as it would be more "do this and she'll be healed" advice that up until this point drives me nuts! I am going to wean her from her meds this summer and try to get a baseline to go forward from.
Any advice from you guys is always welcomed and I am glad to have found this thread to vent and celebrate on!

 

[DisDreaminMom]

Hello! I was about to post a "roll call" on here to see where everyone was off to. I guess we are all in end-of-year planning. Tonight is end-of-year program at school. Should be fun. Packed weekend coming up with too much activity for old me. Then one and a half weeks left of school and we're off to WDW! I am getting a DR's excuse for the last couple of days of school, because DS will be in full meltdown mode and his teachers told me to get him out ASAP. DH is NOT HAPPY with me, but he's not on the front lines of that fight, so he'll just have to get over it.

They had this 20 Day Celebration Contest, where kids got points the last 20 days of school for good behavior. If they had "tickets", it subtracted points from the total possible. And DS doesn't normally get tickets at school, maybe one every week or so. But OF COURSE since they started this business, he's had two and three tickets per day. Now guess who won't get to go to Field Day? His behavior escalates as the days become less structured.

So my final WDW plan is to do CBR the 3-6th. Just visiting Epcot and MK with the Luau and Le Cellier. Then a week at Coco Beach, then back through WDW with 2 nights at WL and as a Grand Finale, one night at Contemporary with a MK view. My only concern is that Hollywood Studios will be packed that last weekend for Star Wars. We want to go Sunday there, I think (the 14th). Any opinions?

Oh, and my Aunt and Uncle are supposed to go, of course, but one of their 8 cats is sick and now they are thinking of canceling out on me. I shouldn't be that surprised. Maybe it's for the best. We'll see.

In other breaking news, my appointment with a new surgeon to have my ankle looked at (screws are moving out of place-fun!) was canceled due to the fact that the insurance company I have just dropped the contract with this particular doctor and now I'm grumpy. I so wanted to get this done before school was out so i could schedule the operation during the summer.

Sounds like you are all well. Here's to more time this summer to relax and cogitate on life a little more. I'm beat.

P.S. Took myself to see new Terminator movie. All I can say is , "WOW!, Cool!, and Let's do it again!". It was a visceral experience. I almost jumped out of my seat a dozen times. It rocked!

 

[bookwormde]

DisdreamMom,

We are going to SWW the morning of 6/12 and most of the day 6/13 (after we go up and see the shuttle launch). I am hoping to be posting so I will give you a heads up as to how bad it is.

GraceluvsWDW,

Sometimes you have to go with you instincts and meet your child’s most immediate needs even if it mean waiting to have a comprehensive evaluation done. It is a good time to educate yourself about sensory issues and the potential for broader nerovariations. Since you have some time before you might undertake broader evaluation it would be a good opportunity to get through the Attwood book, even if your daughter variations are limited to sensory issue (which is actually relatively rare) the perspective and information in the book will be invaluable to you.


bookwormde

 

[GraceLuvsWDW]

GraceluvsWDW,

Sometimes you have to go with you instincts and meet your child’s most immediate needs even if it mean waiting to have a comprehensive evaluation done. It is a good time to educate yourself about sensory issues and the potential for broader nerovariations. Since you have some time before you might undertake broader evaluation it would be a good opportunity to get through the Attwood book, even if your daughter variations are limited to sensory issue (which is actually relatively rare) the perspective and information in the book will be invaluable to you.


bookwormde

I will do that! Also, is there anything you guys think I should request of the Pedi Neuro? I guess the seizure screen is all they do? I do need more research on this topic but we're leaving for WDW June 2 and I haven't even started packing.

I'm open to any reading/research materials/sites that will help broaden my perspective and knowledge. At least firing of the team members that were not supporting us as a family feels better for the time being!

I plan to do my leg work to find the ones that will!

 

[Tissa]

I finally got my boys into a special clinic at the Dr's office that only sees children with disabilities. The Doctor is wonderful and I'm so glad we finally found him. My ds 11 with Autism hates going to the Doctor. Well not so much hates as terrified. He is scared to get on the scale, do blood pressure and forget getting any blood. It's weird since he will stand on the scale at home but he starts getting very upset and runs if they try to get him on one there.

Anyway, the Dr. understood and said that was fine, he just asked me how much he weighed and if there were any problems. It was time for his last round of shots and they needed to get blood for some tests since he is on medication. It took 4 people to hold him still for the shots and it took 6 people to hold him down for the blood draw.

It was so stressful with him screaming and them holding him still. I'm afraid it's always going to be like this. Thank goodness he was fine after we left and didn't seem too traumatized. What a day.

 

[C&G'sMama]

Hey all,

It was good to hear from you all and to "see" some new "faces'

Bookewormde. Where's your PTR? I need to live vicariously through others 'til our next trip. Date TBD.

Our kids get out of school June 26th. Gotta love NYS and the scheduling of the regents exams. I could do with a few less school break days and getting out at least a week earlier.

DDM - good luck with the whole trip and who is and isn't going. As long as your and kids get to go that's the most important. While I know life is crazy and I'm guessing you don't have much time for a PTR will we at least get a trip report when you get back. I know we've been back 2 weeks and I still haven't finished mine.

Becky, I stole the "Fun with Aspies" from you, I think. I love that line.

Earstou - very cool about your son going to the movies. One of my biggest concerns is he never gets invited anywhere. But that's why he has school, swim lessons, chess, lego group etc.

To the new folks, welcome.

And to my buddy mechurchlady. How are you? Where are you?

We actually have nothing scheduled this weekend until piano lessons on Monday. So we're hoping to paint the back and front porch and finally order our photo pass CD and album. We've already paid for it, we just need to get in gear and order them now.

I'm headed upstairs, we're doing family movie night in our room. The kitchen can wait 'til tomorrow.

Hope everyone has a nice Holiday Weekend.

Ann

 

[mechurchlady]

As you know April was a whirlwind month for me. It seems I got so dizzy that I paid the water bill with Chase Visa then again with Bank of America's bill pay.
Today I found out that the water department owes me $16.

Have you ever tried to figure where all of your money went to and just could not quite figure it out? Boy what a big mistake but at least this month I do not have to pay the water bill until August and only part of it, woot.

I am still trying to recover from the Food and Wine event and wish I could go to the Italian one so bad but cannot spend money on it.

Mom is fine and has her daily meltdowns and hissy fits but she gets the hand and the rump view when she is bad. Just like a kid I have to say no to cussing fits and her having fits over me not jumping to her whim. I am now noticing things that never were bell ringing clues. Things have never sunk into her brain. I can tell her 5 times before she gets something. We ate at SIX this morning becomes "Laurie is sick again". Add the selective hear problems and deafness from old age and she can try me.

Have you ever gone by a spot 25 or 100 times and suddenly one day get an AHA moment and see something new? Something that other people say has been there for 20 years. That is how it is with my mother and how I am now seeing past things as being signs of her hypersensitivity and SID/SPD.

I love her even when there are times I want to scream and yell and tell her to knock it off. You just keep treading and keep trying to stay afloat during the storms. I love her a lot and thank this board for helping me find out what is wrong with her.

BIG NEWS
The nurse weighed me and I have lost 16.5 pounds. I went from 304.5 to 288. That is about 2 months maybe. I think it was food reactions but who knows. I need to find out if I am allergic to my meds before I take more. I had a reaction and everything was safe from past history or something like salad that is allergen free.

I hope everyone is doing good and I send hugs and dole whips and prayers.
Laurie

 

[bookwormde]

GraceluvsWDW,

Some neurologists are well versed in Sensory and Autism spectrum neurological variations; actually a neurologist is who formally diagnosed my DS so ask about her thought in those areas. Then again some do not have a clue.

C&GsMama,

As soon as Sea world post there event schedule I will finish my PTR and post it, as you might expect are plans are not “typical”

bookwormde