Behavior Challenge Thread

[koolaidmoms]

I am not going to spoil DPs trip report but something many of you will understand is that on the way home DS decided he had had enough of being in the car and his clothes.

We could not solve the first one. The second we could. So half way home DS rode naked (with his seat belt on) and a blanket over him. He was happy. We just prayed we did not get stopped by the cops.

It was a great trip.

 

[DisDreaminMom]

I have sat strapped into a child's size car seat nursing a large toddler praying that the police didn't pull us over but fully prepared to argue my case because we had listened to my son scream for the last 4 hours and it was either stick a **** in his mouth and shut him up or agree with my husband that we should drive off the road into a tree and end the misery.

It's funny now, but we didn't do that just once, if you know what I mean. Once he cried all the way from Nashville to Tampa. I almost had a mental breakdown.

Had the kids' Christmas program yesterday. Oh, wait, Holiday program, sorry. Anyway, DS looked like he had a migraine the entire time. He does this strange blinking thing. I've noticed him blinking really fast when he is talking to strangers lately. My mom says it's a stress reliever. It looks painful to me.

DD was a dancer in the show, she had to audition and everything to get in there. She did a good job and was super proud of herself.

I spent some time with DS's percussion teacher. Let's just say that he might have more in common with my son than an interest in percussion music. Big time. Whoa boy. Classic case.

 

[bookwormde]

Koolaidsmom,

I guess I do not see the problem, his tiredness increased his sensitivity so you eliminated the trigger, sounds very practical to me, now if you were out in a crowd it may have been a little differents Emergency services personel are begining to get trained in Autism/aspergers they might well have "understood"

bookwormde

 

[GraceLuvsWDW]

dd also does not do well in the car. I have determined she is getting "carsick". OT reports this is from vestibular issues. Nothing helps at all! I am hoping someday we can drive to WDW!

Can't wait to read the trip report.

And DDM, your post reminded me of when I brought dd home from the hospital. First of all, in the hospital the nurses would try to take her to the nursery for tests and would bring her back, shaking their heads saying "you've got a fiesty one here". They were never able to perform the hearing tests in the hospital. Anyway, about the second day after having a C section because she was breech with a leg in the birth canal (sorry if that's TMI), I had to get out of the hospital where they woke me every 2 hours all night long! DD would wake too and be difficult to soothe (I slept with her in my arms/bed in the hospital even though the nurses frowned on this). So I checked out AMA, and in the car on the way home dd screamed like I have NEVER heard anything scream before! It was AWFUL!!!! So, I leaned over and acrobatically nursed her (my mom was driving-I'm not that crazy) all the way home. I'm sure we're not the only ones who were used as a pacifier for "hard to soothe" babies! And it seems, the car has always been a very uncomfortable place for her. I used to think it was being "strapped down" in the carseat but it's more than that as I know now.

 

[koolaidmoms]

I have been thinking back to so many of those little cues lately that we "missed" when DS was a baby and toddler that I realize now were sensory issues.

He NEVER slept and when he did he had to be completely naked with a fan blowing on him. If he wanted covers it was a cotton tea towel and then he would doze right off. He is still pretty much like this.

He would cry when you would put things with snaps or zippers on him.

He vomitted on everyone and everything. We warned people who wanted to hold him. We always got the "Oh, he'll be fine response." Then he would vomit and would be quickly handed back. He still does this one. If he doesn't like the taste of something, smells something off or sees a bag that he just thinks has garbage in it he gags and vomits. This is really pleasant in restaurants. Several times I wanted to pay for the entire restaurants meals. Especially when he did it three times in an Applebees before I could drag him outside.

It's funny how hindsight can make things seem so obvious but when you are going through it you wonder what is wrong with you?

 

[GraceLuvsWDW]

dd sleeps naked. She absolutely refuses to wear clothes at night. And dd still wakes 2-3 times a night every night. Her pedi said it was due to her entering and exiting REM sleep.

I have a few funny stories.

Last week I was on the phone with the insurance company. I got a new car and asked dd to take down the license number and gave her a pen and notepad (yes, I am the only person on the planet who still has a corded phone in my kitchen). Well, she was gone awhile, and just when I was going to go check on her she comes in with my license plate in her hands! I have NO IDEA where she got the screwdriver but she "took down" the license plate alright! She was very upset that she misunderstood what I meant.

On Tuesday night we had a Girl Scout Christmas party with her troop over for an hour. 10 girls in our house made dd very uptight. She came into the kitchen with a broom and started sweeping the floor saying everyone was making a mess. (Doesn't make for a good hostess ) Then she went into her room, shut the door and didn't come out til everyone was gone. She told me to never, ever invite that many people to our house again!

Today was the last day of school until January. Hooray! and Yikes! all at the same time. I don't have to deal with her venting after school now, but now I have to keep her entertained for two weeks! Today was movie day at school. To my horror, I found out they were showing Polar Express in 3D. Ok, I knew this = disaster for dd who #1 doesn't do movies and #2 HATES 3D glasses (yes, we do have to skip Philharmagic, etc at WDW)! So I found out they let her do workbooks in the classroom while everyone was in the movie. Sound like they're getting the idea??? Well, they're not. DD's teacher is as clueless as ever. Still doing things that trigger dd's anxiety like moving her desk around and such. Will they ever come to their senses? One of the Girl Scout moms is a Sp Ed teacher and has spent some time observing dd at meetings. She was APPALLED when I told her dd doesn't have Sp Ed and even Livid when I told her they denied 504. She said she'd take it all the way to TEA if she were me. Makes me wonder how this school can so blatantly deny services where they are needed. Sorry to beat the dead horse but ya'll know I have to vent!

Thanks and hope all is going well! Hope C&G and KoolaidMoms is settling back into "normalcy" after the trip!

 

[GraceLuvsWDW]

One more thing.

dd has been obsessing and fixating on the wii, so I broke down and bought one. She's going to be so excited to get that from Santa ! It will help eye-hand coordination hopefully! Just thought I'd share.

 

[C&G'sMama]

DDM- you're killing me(lol)

Grace - you too - "take the license plate down" OMG!!!

DS hates clothes. In pre-K the teacher had to make it a rule that he come fully dressed (including underwear) to school and even made him a special cut out figure with velcro clothes. It worked, though even in 1st grade he still tries to get out of the house without uderwear. What's the problem with that? The fact that his pants are half way off his heiny half the time

The only concern with the police is we had visions of being pulled over and having this little naked boy in the back seat when it was 25 degrees outside (we were in PA by this time). Like we were punishing him or something.

 

[bookwormde]

GraceLuvsWDW

Ok I have finally stopped laughing about license plate, she did not misunderstand you she did exactly what you said, and very resourcefully I must say.

You are going to have fun with the Wii, my DS loves it and is unendingly frustrated by it at the same time (hand eye coordination). The solution is his brother "plays" it while he supplies all the strategy and tactics and amazing scene memory (you might use the same system if she gets frustrated).

I told my DS the request and he started laughing immediately, and said "she went out and got the license plate, right".

bookwormde

 

[DisDreaminMom]

I AM DYING LAUGHING! DO you know how hard it was for me to unscrew the license plate off my car the last time I had to do it? I think your DD needs a summer internship at NASA or a shipyard or something.


Did you ever read Amelia Bedelia (sp?) books when you were little and think, "She must be nuts!" I'll bet every single one of you has read the books since you've had your kids and thought, "Well, of course she did those things! How could she NOT dress the chicken and dust the living room? What kind of fools would leave a list like that, anyway?"

Looks like we've got a bunch of related kids. Koolaidmom's and C&G's Mama, I have already determined our sons are twins separated at birth.

Grace, when my son was born, I could hear him screaming the entire time the nurses had him doing tests. I said, "That's my kid. Bring him in here!" and the older nurses just kept laughing it off. "You need to rest! We'll give him some sugar water!". How on earth could I rest with my kid howling so loud all I could hear was him? I finally got a younger nurse to go get him. I had to beg. I think I cried. Anyway, I got him and put him on top of me and he fell right asleep. I didn't let them take him out of the room again. When they picked him up, he screamed bloody murder.

Interestingly enough, he was such a colicky baby. He cried a lot. I thought he was deaf when he was about 1 because he wouldn't turn to look at anyone. Until my son was 3, I kept asking the doctor to test him to see why he was so different than his sister. He was very upset all the time and was almost totally non-verbal. She said he would catch up. Lots of people thought he was deaf, but I figured out he could hear a bug in the other room if he wanted to. I had to fight to get him tested for special ed pre-K where they asked me why my pediatrician didn't see this in the first place.

His only comfort was being parked in his carseat under a ceiling fan. That was tough because we didn't have one in our house. Imagine then, that every time we went anywhere with a ceiling fan, DS would scream until I let him sit underneath it. It all started with the fans. Shouldn't someone have seen that?

He hated rocking chairs and bouncy seats. We had to sit with him in a death grip in our arms and bounce as hard as we could on a big exercise ball to get him to calm down or go to sleep. I though I was going to give him shaken baby syndrome. My husband and I spent hours on the ball bouncing that kid, for about two years. He went through spells where he cried nonstop for several days in a row every month or so. I took him to the doctor and nothing was wrong with him. That lasted until he was about 5. It was so bad, we would basically be housebound. It was torture for everyone.

Clothes are still an issue. He spent many years naked at home. He just couldn't handle clothing. It's been better since we moved to a colder place, as the hot weather is just a killer for him. He still gets blistering heat rash anytime it's over 80. He's nothing but red spots all over his arms and legs when it's hot. Some get infected and it looks like he has severe acne, but it disappears completely when it gets cool enough. If anyone knows anything about this, let me know.

I'm so glad you guys are on here. Without you I'd feel like I was some kind of space alien walking around amongst the humans.

Just made pumpkin muffins. I have somehow gone from having a totally relaxed Christmas week with nothing but work at the Disney Store for a few hours, to now having the following:

1)Work 4 hours tonight, 8 hours Sunday, 7 hours Monday, 5 hours Wednesday
2)Dinner party at my house for 8 on Tuesday
3)Feed husband's bosses dog Monday and Tuesday (twice per day!)
4)Take care of horses and farm at our rental property 1/2 hour away the 22, 24th and 28th (total of about 3 hours work/drive time in mud/snow)
5)Dinner party for 8 Wednesday
6)Christmas at my house for my mom and sister's family. Nobody offered to bring anything. I didn't even actually invite anyone. They just "assumed" I was hosting Christmas.

Me, frazzled? Why?

 

[C&G'sMama]

DDM - Good Luck with getting through the next week. Wow!

We love the Amelia Bedelia books. They have been good for DS with working with language. And he's always looking for "forks" in the road. (lol)

I'm amazed at the license plate thing too. I remember a friend of ours coming over and using a blow torch to get the plate off one of our cars.

As far as being naked in the house the rule is, if someone (like your sister) asks you to cover it up you need to at least put boxers on. And if we have people over you need to have on a shirt and pants.

 

[GraceLuvsWDW]

I'm so glad you guys are on here. Without you I'd feel like I was some kind of space alien walking around amongst the humans.

I am so grateful for you guys too. It's strange how sometimes you just need someone to get what a strange world you live in. One friend here doesn't believe anything's so different w/dd. She's the one I went to WDW with in June if you remember all that drama. Anyway, I vent to her sometimes and I just get, "yeah, my son does that too." It kinda drives me nuts. Why? Well, it's one thing for dd to pretend she's a coyote (she's been a coyote since yesterday btw). But when her being a coyote stretches DAYS where the NT kids in the neighborhood come over and get sick of that "game" after 30 mins or an hour, dd takes it to the EXTREME. Last night, she wouldn't sleep in her bed because coyotes don't sleep in beds. So she curled up on the floor next to the bed. Now, she didn't tell me why, cause coyotes can't talk human but that's what I gathered.

It's the dedication to their NV fixations and ideas that is different. You can't talk them down and out of a fixation like a NT kid. Can't bribe them out. You just have to wait it out. DD didn't eat dinner and hasn't eaten today (except I crumbled some veggie chips and told her it was coyote food). This is a whole different world we're living in here. No one else who has not lived it would even begin to understand.

DD's current "fantasy" is in part due to her excitement and stimulation from being out of school. See, some kids would get energetic or laugh and play, but dd, when faced with the strong emotions goes into another "world". It's facinating, frustrating (couldn't go grocery shopping this am), and just, well, DIFFERENT.

You guys get that. I know that and am grateful to be able to vent these crazy things here. I'm sure there's crazy things in all of your lives that would even make me shocked (and at this point it would take a lot to shock me ). And then there's the very difficult parts. Like what I had to endure at dd's dental appt. I wouldn't wish that experience on my worst enemy. Seeing your precious child act like a rabid animal is not a feeling or picture that you can get out of your head or heart for a very long time.

And I have to say that you have done so much to make me feel OK about all of this. I think I've come a long way since dd's dx this past June. Yeah, we as parents all know there's something different, but when you get it in B&W, statistics and formal terms it is very hard to deal with. But you helped me realize that this is NOT a curse but a blessing in disguise. And I truly know that now. Some things are harder but I am not living a life "on the surface". Our lives are FULL, 100% indisputably FULL and you take the good with the bad and even with my coyote sleeping on the floor I know I am far, far blessed. More than I even can comprehend right now.

Ok, enough of that.

On another group I am on they are talking about how their NV kids "see ghosts". Now this is a bit farfetched for me and maybe not a suitable discussion for this board but I thought it was interesting. I by no means think dd sees ghosts but she is more sensitive and even frightened than most. Add that to the rich fantasy world and you get a recipe for what could be construed as seeing ghosts (dd still remembers and fixates on her bad dreams). They are talking about HFA kids seeing people in colors (not racially) and such. Do any of your kids do this?

Just wondering.

 

[C&G'sMama]

You all are making me laugh a lot today. Thank you.

Grace - Our DS is a raven, has been for quite awhile. Endless hours of cawing are "oh, so fun". But like you all said you get it. And we can laugh about it. Let's face it if don't laugh we cry (which we do some of too, but it's nice to be able to laugh).

 

[DisDreaminMom]

OH DEAR JESUS! THERE IS A GOD! AND A SANTA! I FOUND A USED SAXOPHONE!

DS has been telling me for weeks now about how Santa will get his elves to "gather the raw materials to create a saxophone for me and his elves can shape the metal and make me a very nice saxophone."

I don't know how many of you have priced out these instruments, but they are not cheap. I found one on Craigslist for $90 and bought new reeds and mouthpiece for another $50. Which is a pretty good thing because he talked for almost an hour today about Santa doing all of this for him. My sister watched him while I worked and took him to the neighborhood music store. The man in there showed him every single instrument in the place. There was only one instrument he didn't know the name of. Something from Brazil. Everything else he not only knew, but showed them how to hold them and play them.

I met the lady with the saxophone at the mall after work. There is a God, I swear.

And Grace, somewhere back in the depths of this thread I talked about my son and how he has said things about my late father that he could never know. We used to have a lady on here that I talked about this with. I don't know what to think, because while I was raised in a very strict religious household and was taught that ghosts are wrong, I also lived in a house built in 1792 with a ghost. I grew up seeing things and experiencing things that I don't talk about with most people today. It was never bad- it was always good and always a loving, kind thing. But I still have a thing where I can walk into a place and feel a bad feeling or a good feeling, if you know what I mean. Honestly, I don't know what to think. I have a friend that is a holistic healer and she said ASD kids vibrate on a higher energy level (DUH!) and this makes them more able to feel other energies. I'd have to say I "get" this, too.

Now off to make gingerbread for the party tomorrow. Take care.

 

[KirstenB]

Grace, you're cracking me up with coyote-girl!! Surely coyotes have a rich diet--aren't they omnivores, like dogs?

I'm definitely careful what I say about our younger dd to our families and friends. It's such a roller coaster existence, I don't think others can fully understand without being in the same situation.

Although, I've met 2 other moms of autistic kids, just by volunteering at the middle school (older dd's school). The third mom I know is the coordinator for volunteers. She called me a few weeks ago, to tell me about the other 2 moms. Neither of us believe it's a coincidence. She and I always can talk with each other about anything to do with our kids. We talk each other off the ledge all the time!

I too love all you guys!! It's like we can all talk in shorthand to each other. Zoe is already crazy because of the holidays and being out of school, agghh!! 2 more weeks!!

 

[DisDreaminMom]

Just to let Grace know, I picked up my 9 year old DD from my sister's house earlier. She has been moping around the house for the last 3 hours going on and on about how SHE never has any fun here, she has no video games, her life is boring, etc.

I would give anything for a coyote daughter right now. Let's trade. I can handle dogs. No problem. You take pre-pubescent whiny kid for a while. Deal?

 

[GraceLuvsWDW]

Just to let Grace know, I picked up my 9 year old DD from my sister's house earlier. She has been moping around the house for the last 3 hours going on and on about how SHE never has any fun here, she has no video games, her life is boring, etc.

I would give anything for a coyote daughter right now. Let's trade. I can handle dogs. No problem. You take pre-pubescent whiny kid for a while. Deal?

No, that's ok.... My coyote is back to being a 6yo child. She's been pretty good today. It's wonderful not dealing with the backlash of the school day. If only I could homeschool, life would be so much better.

Weather is wonderful here. Feel sorry for all of you in the blizzards. It was 67 and sunny here today.

And I'm even glad I cancelled the WDW trip, I hear crowds are awful. We made a turkey, mashed potatoes, green beans, pecan pie and bread (with help of some people in a local charity I am part of) and took it to the firehouse and fed the firemen yesterday. That was enough to get my coyote back to human. She enjoyed watching as we bestowed the firemen with the bounty. Little things like that set the example that is hard to otherwise teach our kids (empathy for others). She's been asking nonstop questions about what it's like to be a fireman today.

Hope the holidays are shaping up as well for all of you too!

 

[disneymom3]

I have been thinking back to so many of those little cues lately that we "missed" when DS was a baby and toddler that I realize now were sensory issues.

It's funny how hindsight can make things seem so obvious but when you are going through it you wonder what is wrong with you?

Isn't that simply amazing? DS with the sensory issues is my middle one. His older sister thought her swing was the best place in the world when she was an infant. For DS it gathered dust. He would scream like he was in mortal danger (which I know now IS what it felt like to him.) Changing his diaper was quite the experience as well. He basically still wants the same clothes on all the time....24/7. I have found that Old Navy makes very soft clothes and their seams on many things are very flat. Good fit for him!!

On Tuesday night we had a Girl Scout Christmas party with her troop over for an hour. 10 girls in our house made dd very uptight. She came into the kitchen with a broom and started sweeping the floor saying everyone was making a mess. (Doesn't make for a good hostess ) Then she went into her room, shut the door and didn't come out til everyone was gone. She told me to never, ever invite that many people to our house again!

I LOVE your story about the license plate! The GS meeting sounds like my son's first sleep over birthday party. He came into my room at about 10:00 at night and asked if we could just send everyone home. Well, nope, couldn't do that. He ended up sleeping on my bedroom floor while his friends chated in his room etc. The next day he announced that he was not ever having or going to a slumber party again and that he was not ever having one particular boy in his house again as he was "way too loud!" I hate slumber parties so I was QUITE happy to accomodate that!

As for Amelia Bedelia, that is actually one thing we have DS reading upon the advice of his OT. We talk about what the things were really supposed to mean. He very very rarely figures it out on his own, but we recently read one where she becomes the substitute teacher and he actually picked up on some of it on his own.

. If only I could homeschool, life would be so much better.

I homeschool and some days I am really glad that I can work around DS without stressing him out and other days I think that God has quite the sense of humor. (Other days when I want to lay down with DS and cry and kick my feet, I think God is not very nice!) I just know for us that they would not be able to accomodate what is best for DS. We went through initial testing there and they completely did not get anything I was trying to show them or tell them. All they got was that DS was behind on math and their solution for that was to drill extra time each day. Yeah, that would be pretty. I am really awed by all of you who know how to fight for what your kids need. I would not have the first idea of where to even start!

 

[C&G'sMama]

Hope everyone is having a joyous and blessed Christmas.

As for us we hit the road again and are in Myrtle Beach to spend Christmas with DP's side of the family. We explained that Santa would leave the presents in Rochester. Then DS went from believing in Santa to not in about 5 mins. (literally) He approached it in his usual matter of fact way.

Hope everyone has a wonderful day.

-A

 

[bookwormde]

It is funny, I got the ”you know that I know that there cannot be a Santa that visits every house in 1 night, right. I know Santa is about the spirit of Christmas and giving. Do you think should tell mom or let her keep thinking I do not know”

bookwormde