Behavior Challenge Thread

[pudge the fish]

ARRGJGHGHGHG

hubby just called and said they are closing down the plant where he has worked for 11 years..costs too much for them to ship stuff down to Florida to make things..they may be open till December and I would imagine him to be one of the last to go due to his dept. but when ya lay off 200 people in a small area it bites.

I am not too scared money wise as he can get unemployment - we have no debt except a car payment and we are cheap anyways I worry about medical care for us now.
but we aren't in the HUB of jobs around here and we have responsibilities as far as family goes so we can't just move to a different area.

oh well life goes on- I guess I could turn this into a behavior issue as I wasn't very well behaved when I found out

thanks for letting me Hijack the thread for a minute

 

[KirstenB]

Pudge the fish, this economy just stinks! DH works in manufacturing too, and they've had layoffs at his plant. I hope your dh finds a new job soon.

 

[GraceLuvsWDW]

pudge so sorry to hear that! I know that's got to be stressful!

my dd was tugging at her ear so I took her to the dr, what a fiasco!!!
The nurses INSISTED on taking her temp (I understand why but all they had was a digital thermometer for under tongue or arm) so I had to basically hold her down while they held the thermometer for what seemed like an ETERNITY. Then she wouldn't get on scale so I have to hold her and weigh then have nurse hold her and then weigh myself (this is a 6 year old mind you). Anyway, they looked into her ear and said ear infection so now antibiotics.

On a good note her dr was very accommodating and good with her. She said my dd probably is in lots of pain. Poor girl! One of the benefits of modulation issues I guess is that it really does not seem to be hurting her too bad!

Hope all is well with everyone. Have a great weekend!

 

[C&G'sMama]

We're a little late here in New York. Most of our area schools finished Wedensday or yesterday. Our kids went trhu today. It's so hard to believe. It seems like yesterday DS was starting his first day of Kindergarten. DD missed her last day of school due to Strep Throat. DS had it last week. At least she presented last night so the culture was positive today. She goes to a 1 week art camp starting Monday so the worst should be knocked out of her by now.

DS had a lot of problems with the other children at school the last few weeks. But we try to stay positive and encourage him to remember his buddies from Lego group and from the chess center. He had an aide in the classroom that was absolutely wonderful with him (it's not a 1:1 but the "teacher's aide" or instructional support person as our school calls them). We'll keep an eye on things again next year.

So after the 4th DS starts speech, pragmatic, at a local college and both kids will go to a writing class for letter formation 1 time a week for 6 weeks. Tomorrow we go to our local amusement/water park for the day. Unfortunately DD probably is going to have to stay home with mommy. We bought season passes this year so I told we'd go as soon as she's better.

Hope everyone is doing well and having a good summer vacation thus far.

Ann

 

[alizesmom]

Hi, I am venturing into this thread with hopes of some ideas. My 4 yr old daughter was just diagnosed with Disruptive Behavioral Disorder NOS as well as Mental Retardation NOS (probably severe range). She punches her own face when distressed and has started slapping or scratching the faces of caregivers when upset. I really need suggestions since she can really cause damage. Karen

 

[bookwormde]

If you read the DSM-iv and the training guides for it almost any child who is MR or ASD (or a combination of the 2) would meet the requirements for DPD nos, so beyond allowing the clinicians to bill and possibly getting some limited services it is of almost no value unless you are “collecting” alphabet soup diagnoses

I guess my first question would be is when the events are occurring is she actually “harming herself”. If so then some method of lessening the potential damage needs to be developed. If not it is a good time to play detective and document what the precursors are and what interventions make the situations better or worse, and what happens with no intervention (as long as she is safe). She sounds like she might be a good candidate for “floor time” therapy, which with a little training you can do a lot of yourself.

One thing to remember is that often caregivers intervene (and typically this exacerbates the situation) when observation and monitoring would be more useful, due to their own “social perspectives” and needs.

In the end it is about understanding the sensory, social and cognitive differentials that are creating the “frustration” and within her limitations working on skills to lessen them and making sure the best accommodations are in place.

bookwormde

 

[alizesmom]

Thanks bookwormde, the one behavior I can handle:she has started scratching caretakers when upset, we just place her on the floor for time out. The other is more difficult: when she is in pain or emotionally upset she will punch herself in the face till she draws blood and causes bruising. We use soft elbow restraints to lesson her ability to cause herself damage but otherwise need suggestions. Obviously these 2 behaviors often end up working hand-in-hand. Karen

 

[C&G'sMama]

Thanks bookwormde, the one behavior I can handle:she has started scratching caretakers when upset, we just place her on the floor for time out. The other is more difficult: when she is in pain or emotionally upset she will punch herself in the face till she draws blood and causes bruising. We use soft elbow restraints to lesson her ability to cause herself damage but otherwise need suggestions. Obviously these 2 behaviors often end up working hand-in-hand. Karen

Welcome to the thread. I wish I had some words of wisdom but I do send lots of hugs and hopefully some laughter.

Off to work. Everyone have a great day.

 

[bookwormde]

Alizesmom

The elbow restraints (waist belt type with short leashes I assume) are a good thing when you can “predict” situations where she is likely to be “stressed” and injure herself. Keeping fingernails well trimmed and gloves (thicker padded ones are best) if she will tolerate them are also good when environments have proven stressful. Blanket swaddling is also both effective and “comforting” for many of our children when events occur. Pretty much any procedure that you would consider for and infant who is in distress is a possibility.

Alternate things to punch (or pull, twist etc.) and ways to get any tactile sensory needs met can often provide an effective alternative to these maladaptive manifestations if they are “immediately available”.

One thing I will mention is that with many of our children “time outs” are actually positive reinforces so care must be taken not to expect them to be useful as behavior modifiers, but to provide a safe environment with reduced stresses for decompression time it works.

This is an age where frustration and anxiety tend to build, particularly if communication skills are limited. This is especially true when alternate caregivers are not as “tuned in” to the non-verbal communication as it sounds like you are. Assuming she has limitation in communication if you have not already started PECS types devices and procedures would likely help a lot.

As always playing “detective” is a big part of the process of identifying sensory, communication and social issues that are contributing to these “melt downs”. If they have some frequency in a relatively localized area setting up a video camera can help a lot since it is much easier to “analyze” events when you can be completely second party to them and replay some of the nuances.

Creating a “safe” area for her to retreat to when she begins to feel stressed is also a great tool, although it take a fair amount of time to figure out a preferred environment and for her to build the skill to use it.

Quite honestly you sound reasonably experience and “tuned in” so I am sure you have tried many of these but I just though I would lists a few in case any have not been tried.

I am also a little “skeptical” of clinicians who classify children as MR at this age when the situation is complex and other social/sensory/communication issues have not been fully evaluated since there effect can often mimic MR at this age. This is not to say that she does not have some cognitive issues just that the “cause” has yet to be determined.

Here is the link to Stanly Greenspan’s floor time site http://www.icdl.com . In its simplest form you might be able to get the caregivers to start using it, without a lot of formal training, since this is often where many times the events typically are more frequent and severe. There is some preliminary clinical trial evidence that for children similar your daughter that it is amazingly effective.

C&G’sMama

The end of the school year has always proven “challenging” for our DS. I write it off to be being “burnt out” and the fact that the last couple of weeks tend to be much more about “social events” than the “standard routine and structure”.

bookwormde

 

[koolaidmoms]

Alizesmom:


We are just listening to a screaming fit about having to pick up the toy room. How do you all deal with this? We don't acknowledge the screaming, crying, whining, foot stamping, throwing himself on the floor but we just keep repeating our request to please pick up the pieces of paper off the floor and put it in the bag. We give one task at a time with VERY explicit instructions. But we are going to lose our minds. We do this about 3-4 times a day from 5 minutes to 2 hours at a time.

We know some say not to give time-outs as this reinforces the behaviour but we don't know what else to do. We wait until he is completely done with the task (still screaming, etc...) then we send to room to get ahold of himself. If we send him out before the task is done he will sit where we put him for hours without doing the task and then when we ask him to complete it we are back to where we started.

Our developmental pediatrician says to make it so we don't say no to him but that is almost impossible. Sometimes the answer is no. Not when you do this you can do this or as a reward you can do this if you do this. He can not have food coloring. The answer is always the same, "You are allergic to this. It will hurt your kidneys so they don't work well anymore." Then the screaming starts, then the stamping and hitting, etc... In stores is the worse but we keep walking and talking to him totally ignoring the behaviour.

Will it get better or are we setting ourselves up for it to get worse?

Koolaidmoms & C&G's Mama

 

[alizesmom]

Thank all of you for the suggestions. Some I have tried. I never heard of time out being a positive reinforcement but understand the premise. Ciara's time-outs involve being place on the floor in front of the caregiver for a brief period of time. Her no-noes are just stiff splints that prevent elbow bending. One problem we face is that her melt-downs which involve the self-hitting usually indicate a physical problem such as pain or respiratory distress so we can not ignore them. In fact she is currently in the PICU and her way of telling us there was a problem was to hit. I am trying to teach her sign since it is the only thing that she even shows interest in doing. PECs are not interesting for her or maybe are beyond her abilities at this time. I will surely be following this thread eager for more insight. Thanks. Karen

Thought I would add, Ciara is nonverbal, minimally mobile, does not know how to play by herself, does not show empathy, does not understand consequences, can't follow instructions, doesn't seem to know body parts etc. which is why the MR diagnosis, I haven't decided to accept that yet but understand why it was made. Good thing is she can't run off, can't make enough noise to bother other people and is still small enough to cart away.

 

[bookwormde]

Hope she is doing OK and will back home with you soon. Communication breakthroughs are always slow in coming and require varied and endless tries at different things but when they do “arrive” are real game changers, good luck.

bookwormde

 

[GraceLuvsWDW]

Alizesmom: Welcome to the thread. There ar a lot of people who can help you with good advice here and if not advice then compassion.

My dd's regression seems to be getting better. I think you were right about it easing when the meds and the rebound from the meds were completely gone from the system. She is having a lot of trouble sleeping now, her little brain and body just want to keep going even when it's time to rest. She absolutely cannot fall asleep on her own. She needs contant redirection to quiet/still and soothing reading or back rubbing.

We start the next phase of neuropsych testing on the 9th. Looking forward to it. I've been reading a lot about Biomed treatments. Does anyone have any experience with supplements/nutrient testing? Or even allergy testing? I've heard some pretty amazing storis about spectrum type behaviors being eradicated by removing foods from diet, adding enzymes, or supplementing with Mg and such. It scares me to even embark on these things in case it's all bunk. The book "Changing the Course of Autism: A Scientific Approach for Parents and Physicians" has ben recommended to me. Anyone read this book?

Hope all is well and I hope everyone has a great 4th!

 

[bookwormde]

I have scanned many of the books and papers about diet and Autism. The one thing I have found is a lack of a fundamental understanding of the relationship with diet and the associated improvement of cognitive ability and processing and neurovariations.

In the simplest terms all indications are that, improved diet does not do any thing different nuerochemically in our children than it does in nerotypical children. Our children just benefit disproportionally to improvements in cognitive ability and processing efficiency that comes along with an optimal diet.

So as long a your child is getting good nutrition (or as good as possible with the limited diet many of our children have) why not optimize it, just remember that there is nothing “magical” about it, but in many cases it does show significant benefit. And consider the amount of effort VS benefit that you get and if this is the most “efficient use of your time” since we all never have enough time to do everything we would like to.

Also remember that our children often require significantly less sleep so keep that in mind. It will take a significant amount of time (way beyond what it takes the actual drug to be gone from her system) for her to adapt back to the more natural neurochemistry that she now has.

bookwormde

 

[DisDreaminMom]

Hi Guys. Been busy for the fast few weeks. I was just catching up on here. I was reading the BRIEF questions and laughing to myself. There isn't one of those things that my son does NOT do. It was like reading a synopsis of my typical day with him

Alizemom, I have no good advice, and Bookwormde is, once again, the master of our domain. But I can offer you a great big and some serious, super strength .

Pudge, I am SO sorry. DH was unemployed for six months almost two years ago and it was really scary. I wouldn't wish it on my worst enemy, let alone a sweetheart like you. Sending you prayers and pixie dust. Super strength pixie dust.

C&G's Mama and Koolaidmom's, wow! Just out of school now? Tomorrow, our kids will have exactly one month until school starts again. I can't believe it. Sheesh.

It's been cool here- around 80 or below with low humidity. Finally able to be outside with DS without literal meltdowns. Just in time for DD's pony to get kicked and we have to be at the barn for hours every day to care for him. Poor DD. Pony has to be on vacation until Christmas.

You all take care. I hope someone has good suggestions for Alizemom. She and Pudge need some extra support.

OH, by the way, wherever you are Miss Becky, my son did the same thing your son did with a can of soup- completely freaked out that someone else was going to eat it. I let him hide it because he was so upset about that soup. I immediately thought of your son.

 

[GraceLuvsWDW]

Bookwormde, I get what you are saying. And I'm a person who relies heavily on fact not anecdotal evidence. But these moms are swearing something as simple as magnesium can show tremendous improvement. These moms are reporting things such as the repetitive behaviors, strage behaviors (for instance facination with twirling mom's hair-there's one mom who still let's her 18 yo son twirl her hair-I'm sorry, that's just NOT going to happen here! But my dd does have a fascination with rubbing a certain spot on my arm ) Anyway, they say these behaviors and others can magically disappear with added magnesium. They were saying to start with miniscule dose then up it. They are also talking about yeast overgrowth issues leading to leaky gut, food intolerances, protein digestion problems, liver function issues, etc.

Now Bookwormde, I've never met you but you are one of the most informed people on ASD that I know, what do you make of these claims? I don't want to interrupt the neuropsych eval but are the DAN! Dr's successful in these treatments and is it something you've ever done or known someone who did?

I wonder if it is a case of seeing improvement where you want to, believeing in what you need to, but then again these seem to be mom's like me who see the strange behaviors and feel helpless to stop them. Little things. A whole bunch of little things (and big things) that add up to difficulty in life. I am trying so hard to keep my eye on the ball, be an advocate, do not listen to criticism but make informed decisions but sometimes I feel lost in a tangled maze of misinformation.

I know I've said that before on this thread! Thank you guys for putting up with my rants!

DisDreaminMom, I don't know what issues your son has, I was wondering if most mom's would answer positively to those BRIEF questions with their NV children or is your son NT?

Alizesmom, I hope you're coping with your dd's issues. I know that must be very trying to deal with constantly. We're always here if you need to talk.

Everyone have a wonderful Independence Day! Those 80 degree temps sound wonderful, we're stuck here with 100+ for how many weeks in a row without rain??? Ahhh, Texas. No need to go to the spa, there's a sauna outside!

 

[bookwormde]

Sometimes dietary changes can make significant differences when they improve neurochemistry, but dramatic changes as a stated anecdotally are relatively rare and not clinically verifiable. With repetitive manifestations if you reduce stress or modify sensory sensitivity by improving neurological or physiological chemistry certainly it can have a significant effect, unfortunately as with much with our children the combination of factors is so complex that what works for one child may actually be detrimental for another.

I think a lot the anecdotes that are published come from a “curebee” mentality and wishes rather than more thoughtful and analytical process.

There are a few people on this board have seen some improvements with some glutton free diets, hopefully they will be along with some first hand information. It is important to remember that even if successful it is just on small tool in our toolbox of dozens of tools for helping our children.

When I am not sure I just “go with my instincts” which tends to be the best route.

bookwormde

 

[C&G'sMama]

Hey all,

Happy 4th to everyone!

DDM, wow you guys start early, but you also get out earlier.

GraceluvsDW - I'll send you some rain and cool winds in trade for sun and dryness. We desparately need to paint our front and back porches but as soon as they dry out it starts to rain. We're scraping and sanding now in hopes of painting tomorrow with add'l hopes the paint we'll dry before it starts raining again.

Not to sound like a broken record but any thougs on what to do with G. It's the melt downs and whining that get us. He does go back to the developmental ped at the end of this month and we are going to talk to him about a therapist. Right now he's great, he just finished playing
"This Land is Your Land" on the piano, self-taught. He loves playing and I think it's very therapeutic for him. He is riding without training wheels on his bike now, just for 2 days now so while there isn't rain we've got him outside. At this moment he's outside helping peel paint (he asked if he could help). We can't get him to pick up a sock without a temper tantrum but he loves helping peel paint Also turns out he loves roller coasters. We went on our local wooden coaster "the Jack Rabbit" 6 times last weekend. His sister was sick so DP stayed home while G & I went to the amusement park. He loved it. He loves the wave pool. Loved the log flume, while it's no Splash Mountain you get a nice little ride. I would guess it's the motion. We bought a summer pass so we'll hopefully get there a few times this year (It's 15 minutes from our house).



Pudge, how are you all doin'? Please know you and your family are in our thoughts and prayers.

Bookewormde, thanks again for all the great info.

Everyone enjoy the day, I'm off to get some cleaning done.

 

[alizesmom]

You all are very kind and welcoming. Thanks.
GraceluvsDW: I have no experience with diet vs behavior but can report that I see a lot of anecdotal raves on diet improving many physical problems such as those my kids face.
I love bookwormde term or "curebee". I run across so many who laud a variety of treatments.
I am sitting in Ciara's room laughing as she has totally ignored the 1mg of ativan they gave her two hours ago and this is with a child who weighs 29 pounds.
Hope you all had a great 4th.

 

[bookwormde]

C&G’sMama,

Sounds like G it making great progress, hope C is feeling better. If the wining and meltdowns are mostly about things you are trying to get him to do then you are actually quite lucky. I know you have heard me say it before but standard NT reasons and encouragement for getting him to do things just will not work, it takes getting him to buy into the “logic” of it and even then it takes lots of non judgmental reminders.

bookwormde