Behavior Challenge Thread

[koolaidmoms]

I did make some progress with a "calm down corner". Put a ton of things there she likes like fuzzy blanket, comfy chair, headphones and calming music, pretty pictures, picture books and some sugar free gum-chewing calms her. She has gone to the calm down corner a lot lately and when she does something out of bounds-for instance a few days ago she threw the dice when we were playing a game and it wasn't her turn-I said go pick up the dice-and she said I want my calm down corner. I thought that was pretty good progress in helping her realize when she needs to calm down (of course I had to insist she pick up the dice first, then go to the calm down corner).

I just read this and wonder about this. Our DS has explosive rages if you ask him to do something he does not want to - ie. It is time to pick up your clothes, or if you tell him no to a request. It always centers around feelings of disappointment and anger that he can not express appropriately. It goes from 0 to 100 in the blink of an eye.

He will start kicking, hitting and screaming. There is no talking to him or anything when he gets to that point. Yesterday we were in the car when this happened and I thought for sure we were going to get in an accident because he kicked my seat so hard it pushed me forward.

We try to get him to his room to calm down. We have tried social stories about counting and breathing but nothing seems to break through. And just as quickly as they start they can fade away. They are thankfully getting shorter in time. They used to last for an hour or more but lately they can be 5-25 minutes.

I am scared that as he grows he may start to hurt us. We have an area where he can run or ride an exercise bike but unfortunately when he hits that point you can't talk to him or get him to that space.

Anyone else had this before? How did you diffuse the situations? When did they begin to realize the feelings of anger and disappointment and begin to appropriately deal with it as in calling a time out or labeling it as what it is to begin to deal with it?

We are still trying to get him into a social skills class but so far no openings have come up.

Thanks for any advice!

 

[GraceLuvsWDW]

I just read this and wonder about this. Our DS has explosive rages if you ask him to do something he does not want to - ie. It is time to pick up your clothes, or if you tell him no to a request. It always centers around feelings of disappointment and anger that he can not express appropriately. It goes from 0 to 100 in the blink of an eye.

He will start kicking, hitting and screaming. There is no talking to him or anything when he gets to that point. Yesterday we were in the car when this happened and I thought for sure we were going to get in an accident because he kicked my seat so hard it pushed me forward.

We try to get him to his room to calm down. We have tried social stories about counting and breathing but nothing seems to break through. And just as quickly as they start they can fade away. They are thankfully getting shorter in time. They used to last for an hour or more but lately they can be 5-25 minutes.

I am scared that as he grows he may start to hurt us. We have an area where he can run or ride an exercise bike but unfortunately when he hits that point you can't talk to him or get him to that space.

Anyone else had this before? How did you diffuse the situations? When did they begin to realize the feelings of anger and disappointment and begin to appropriately deal with it as in calling a time out or labeling it as what it is to begin to deal with it?

We are still trying to get him into a social skills class but so far no openings have come up.

Thanks for any advice!

I think if I insisted she go to her calm down corner she would refuse. But I've been good about going there when she's not upset and kindof getting her used to the idea that it is a calming place. I made it very special when I made the area and let her participate in creating the space. I even let her pick out some extra special things, like led lights shaped in butterflies that hang from the ceiling and an aromatherpy device she's intrigued with. I think right now it's working because she likes to be there but, like you, I don't know that it would work once she passed the "point of no return". I think the biggest help in your situation would be to try to avoid the meltdowns at all costs-just short of giving in to his every whim but maybe set up an environment where he feels successful and in control. Then ease him into the idea of a calm down place when he's in control and see if he takes to the concept. I by no means think it solves my dd's emotional outbursts but perhaps it is teaching her about responsibility for her outbursts. Or maybe I am just wishfully thinking.

 

[bookwormde]

Koolaidmons,

Grace has the correct approach, what would typically be a “time out” area, for our children (for items that are characteristic and manifestation driven) needs to be an area of “refuge” for them to feel safe and comfortable while they decompress. Anything used as a “punishment” for manifestations is very damaging. While the emotional and physical expression of the anxiety and frustration often goes from 1 to 100 quickly, the underlying “causes” did not. It is often a building of challenges or a repetitive “difficult” area that is the final straw, but if the background levels of anxiety and frustration can be closely monitored (which to do effectively you really have to perceive the world as your child does) and challenges are chosen (in comparison to just happening or being trust upon the child) at times when the background levels are low amazing skill building can happen. The other greatest way to help your child is to at their level (and once you have an adequate level of understanding) is to make them “self aware” of why their perception and understanding of the world so different from others and why it creates challenges (and gifts). The vast majority of the frustrations and a major portion of the anxiety our children face comes from the fact that the “world” does not understand them.

bookwormde

 

[C&G'sMama]

Koolaidmons,

Grace has the correct approach, what would typically be a “time out” area, for our children (for items that are characteristic and manifestation driven) needs to be an area of “refuge” for them to feel safe and comfortable while they decompress. Anything used as a “punishment” for manifestations is very damaging. While the emotional and physical expression of the anxiety and frustration often goes from 1 to 100 quickly, the underlying “causes” did not. It is often a building of challenges or a repetitive “difficult” area that is the final straw, but if the background levels of anxiety and frustration can be closely monitored (which to do effectively you really have to perceive the world as your child does) and challenges are chosen (in comparison to just happening or being trust upon the child) at times when the background levels are low amazing skill building can happen. The other greatest way to help your child is to at their level (and once you have an adequate level of understanding) is to make them “self aware” of why their perception and understanding of the world so different from others and why it creates challenges (and gifts). The vast majority of the frustrations and a major portion of the anxiety our children face comes from the fact that the “world” does not understand them.

bookwormde

Thank you Bookwormde. I am here with koolaidmoms and she is reading this as I write. She will self admit that she just doesn't get it. I get it because I have some of the issues, not the extent of DS but to some extent. We are still hoping the social skills group will be helpful and are still awaiting a placement for him. Your points and advice are well taken and appreciated.

Anyone have suggestions for diffusing when there is a melt down? We will continue to work on preventing them but for those occassions when they do happen, any thoughts? We will send him to his room to decompress. I will sometimes go in and hug him tight until he can calm down. The sames things don't always work. Sometimes he's better off left alone. It just depends on the day.

 

[koolaidmoms]

I do try to understand him and see where things are coming from. I try not to say no to him but rather after we do x you can do y like you want. Doesn't work. All he hears is he can not do exactly what he wants to do when he wants to do it or you are asking him to do something to be part of the family such as a chore. Which sets it all off.

Sometimes I have to say no. No you can not rip the toy from the hands of another child. Or what set off the rage the other day -There are 25,000 K-Nex at the museum. We need to let other children play with them too and touch them without screaming and throwing them. I ended taking him out of the situation to another room but he was too far gone so I had to leave the museum. I felt awful for both DS and DD.

I guess I have trouble understanding what are manifestations and what are manipulations by him to not do something such as pick up his dirty laundry or control the situation.

 

[GraceLuvsWDW]

Koolaidmoms-
I hear you and know where you are coming from! It is so frustrating dealing with the extreme emotional reactions to simple things! My dd hit a neighbor child in the face with a plastic chair last weekend and that kind of stuff cannot be overlooked or go unpunishd imo! With regard to what is manipulation and what isn't I look at it like this: Their behavior is within their control when they are not on overload, once they are on overload (and that can happen, as you said, with a minor occurance) the emotional reactions that are the main problem are not in their control. I feel like it's my job to teach dd that there are consequences to extreme behavior but I don't think with our kids it's as easy of a conditioning as it is with NT kids. It is a much longer process. I am the referee many times with dd and her friends and when a toy gets ripped out of hands I go and walk her through step by step: how would that make you feel?, Give it back, can you say you're sorry?. Many times this provokes meltdown and I have to try to stay calm and many times I have to just walk away if the meltdown becomes an overload (walking away after separating her from others to avoid injury). She will beat on her door, destroy her room, and at times of overload unfortunately there is not much I can do but try to discuss when things calm down or bring it up sneakily in converstion during the "good times". I have not found any method that completely works during meltdown although there are methods that can help circumvent the meltdowns such as Collaborative Problem Solving. If you do not have the book "The Explosive Child" I recommend it.

I had a long phone converstion last night with a mom here who has a high school Asperger's son. He is NOT in Sp Ed. He has been under 504 since 5th grade. He is failing many subjects. She warned me about going into the ARD disputing their report. She says there's nothing Sp Ed can do for my dd until she fails her classes! She says making enemies at school or in Sp Ed by disputing their techniques, assessments, and conclusions will only alienate the ones who can help me (the gate keepers). Her advice was to work with the teacher, document everything in writing to teacher and principal such as meltdowns at home and chewing through clothing and school refusal. She said 504 is good because it is overseen by Office of Civil Rights not TEA and they are more unbiased than the TEA insiders. This is really depressing to me and I am thinking more of pulling dd out and putting her in private school. Thre is just no way, with her profound gifts and strengths I am going to stand by and let the school refuse to address her weaknesses and wait for her to fail. I just cannot do that!

 

[GraceLuvsWDW]

Thanks to Bookwormde for looking over my report! I just got back from a pre-ARD meeting and got addl assessment results. If anyone knows how to interpret these please help! They are stating it all looks "average".

CELF -4
Concepts and Following Directions SS 14 Conf. Int 13-15 Perc.91%
Core Language SS 104 Perc 61%
Expressive Language SS 98 Perc 45%
Expressive Vocab SS 14 Conf Int 12-16 Perc 91%
Formulated sentences SS 11 Conf Int 9-13 Perc 63%
Language Content SS 123 Perc 94%
Language Structure SS 83 Perc 13%
Recalling Sentences SS 8 Conf Int 7-9 Perc 25%
Receptive Language SS 117 Perc 87%
Sentence Structure SS 11 Conf Int 8-14 Perc 63%
Word Class Expressive SS 12 Conf Int 10-14 Perc 75%
Word Class Receptive SS 13 Cong Int 11-15 Perc 84%
Word Clss Total SS 13 Conf Int 11-15 Perc 84%
Word Structure SS 10 Confid Int 8-12 Perc 50%

TAPS-3
Auditory Comprehension SS 9 Perc 37%
Auditory Reasoning SS 11 Perc 63%
Cohesion Indices SS 100
Memory Indices SS 91
Number Memory Forward SS 8 25%
Number Memory Reversed SS 9 37%
Overall Score SS 100
Phonological Indices SS 114
Phonological Blending SS 16 Perc 98%
Phonological Segmentation SS 10 Prc 50%
Sentence Memory SS 9 Perc 37%
Word Discrimination SS 12 Perc 75%
Word Memory SS 7 Perc 16%

NEPSY-II Percentile Rank
Auditory Attention 51%
Design Fluency 50%
Inhibition 11%
Naming Combined 37%
Naming Errors 11%
Naming Uncorrected Errors 6%
Statue Body Movement 11%
Statue Eye Opening 51%
Statue Vocalization 26%

She was below level or Borderline in half the NEPSY Areas assessed.


Thanks!

 

[GraceLuvsWDW]

I wanted to add that there is a note that says (on the CELF):

"The difference between the ELI and RLI is significant and occurred in 3.3% of the standardization sample. The difference between the LCI and LSI is significant and occurred in <.1% of the standardization sample. While the prevalence of having a difference between language content and structure is low, the performance is within 1 1/2 standard deviation of the mean. The difference is due to language content score being 1 1/2 standard deviation above the mean."

Anyone know what this means? I googled it but got no answers! Just trying to see if this is significant. <.1% prevalence seems strange to me. Could it mean an error in testing? or that dd is one in a thousand (or more)?

Any clinicians out there who can help with this, I'd be grateful.

 

[BeckyScott]

I have no idea what that means. I wish they'd write in English!

Okay, I've got a question about remediation vs compensatory when it comes to the school. Not at home.

Let's say, for example, you have a child that has, oh, very bad handwriting. There are test results that show that the child has a condition where messy handwriting isn't surprising. But it's not like he's missing a hand or something (nothing personal to anyone but you KWIM) he just is going to have a problem with the fine motor. At what point... okay, does the school try to teach better handwriting vs giving the kid an AlphaSmart?

At what point are they allowed to give up trying to better the skill, and are allowed to just figure a work-around where they don't have to try to teach the skill anymore?

Does that make sense? Of course, I know, depending on the situation it might be necessary to give the child that work-around right from the beginning. But depending on the problem, the school should have to try to improve the child's skill first.

I gotta tell you all- I haven't been around much the past couple weeks b/c things here have been so totally insane. But in the middle of the weeks of craziness I had a meeting at oldest DS's school. Seriously. I am on Year 6 of IEP Experience with youngest DS, so I'm not a newbie to the idea. That meeting for oldest DS was the most awful thing I've ever been to. The teachers were very negative. The SpEd coordinator did little more than take notes (which I'm sure they'll try to use against me later somehow). They weren't listening to a thing I said, and I was really trying to be nice about it. At the end of the whole thing, all I "got" was one thing that they should have been doing the whole time, and DS now has an AlphaSmart to take notes on, which I didn't even want for him, I don't even know how that got brought up. They truly didn't understand anything I was saying, and then they pretty much told me that my son was lazy, didn't put forth any effort, and that it was my problem and not theirs. This child does have an IEP and is in a CWC group with a SpEd teacher. UGH! We will survive the year only because I know how to remediate him at home, as best I can. But youngest DS, who has a considerably more complicated IEP, will be moving to that school next year and I'll have two full years of this nonsense.

I don't understand how you can take a child with a diagnosed problem, basically ignore the diagnosis (since it didn't come from the school), have him on an IEP but flunking a class, then get told your kid is lazy and that if you want help you can hire a private tutor.

It's going to be a very long year.

 

[GraceLuvsWDW]

The state of Sp Ed in this country is very sad. It is too often that I hear of the failure of the system as with your son BeckyScott, than the success stories.

My ARD is today. Yesterday I got dd's first report card. It states they tested her and she is reading on a D level (beginning of first grade). When they tested her 6 weeks ago, she was on an H-2 level (end of first grade). So they are showing regression. I am seeing the same things at home.

I've pretty much formulated my approach at the ARD. Go over dd's strengths and weaknesses as per the assessment results. Show examples of refused work, work where she had no understanding of the instructions, and proof of regression in skills. Then to state that public school is supposed to address her weaknesses and that I do not want to wait until her issues are so severe that she is failing to a level that Sp Ed warrants intervention. If they are not going to address the deficits and get her on a right path now I will have to look at alternate placement for her.

I really hope I can keep it together at the meeting!

 

[BeckyScott]

koolaid/C&G-

My oldest DS has "anger management problems", too.

And I am telling you, I don't know what to do to fix it, but you want to get it fixed before he is 5'8" and 150 pounds and puberty hits full-blown. Trust me.

I get very scared not that I can't get him under control at home, but that he's going to "lose it" at school or out in public and have big trouble on his hands.

What I try to do is this: Send him to his room, sometimes that will work and he will calm down. Or have him take the dog outside in the back yard. He really loves the dog, and that will calm him down. Sometimes he just wants someone to listen to him while he goes on a rant. However, when he does that, he does expect me to "fix" the problem and often it is something I can't fix, so that doesn't help.

I think what happens with my kids, both of them, is that they "keep it together" at school and then when they feel safe at home it all breaks loose. I feel bad for them, that it happens that way. But I know it's not a good thing either.

I just know it gets worse when they get older. Puberty is hard. Middle school and junior high-- you remember the dynamic there? I mean, seriously, I've blocked most of junior high because it was such a horrible experience. And things are harder now than they were "back in the day".

 

[DisDreaminMom]

Hey all. Like Becky, things have been busy here, too. SO major hugs to Grace, Becky, and C&G's Mama for all the issues you have been facing lately. Our scheduled teacher's meeting is next week, so I might be pulling my hair out then. I just don't know.

I got a note sent home from Regular Classroom teacher that DS needs to vastly improve his oral "reading fluency". I know this is on some standardized test of some sort. But how can you make a kid read fluently when he doesn't even speak fluently? Funny thing is that my child reads what I call $.25 words (big or strange words) just fine but he sounds, um, Presidential when he reads those stupid "Dick and Jane" books they send home. I think it's more that he could care less about Dick and Jane and their insipid little adventures. When we got the note, my DH said, "Have they actually had a conversation with our son? He can't even talk in normal cadence. What do they expect?"

And they want him to be able to draw inferences from these same sort of simple stories and then write answers about it, but this proves to be a very tough thing to get DS to do. Funny thing is that he can make inferences all day long about, oh I don't know, Ancient Egyptian Mummies and burial techniques or Symphony Orchestra seating charts. Sigh.

Question: Do we want to raise children that will be smart, confident, interesting adults or do we want kids that peaked at Freaking Dick and Jane??????? Cause I'm not so sure anymore.

Special Ed teacher did tell me at Mom's Lunch day last week that she was going to try really hard to get DS to meet with the Gifted Teacher and have him tested. Apparently if he gets in Gifted in 3rd grade, he can still do a "pull out" and go to Special Ed and do his work at his level. She said only problem might be pacing of work. She thinks his behavior is better this year because of more challenging school work.

And thanks to my repeated begging and taking ideas from you lovely people, they now have a Social Skills class for some of the Special Ed kids, including DS. He really likes classes they've had so far. Thanks to all of you!!!

Was I right about "The Middle" on ABC or was I right? Did you catch this week's episode? I laughed so hard I had an asthma attack. Then I cried. New Favorite Show. Period. Thanks for a little bit of humor about something I can relate to.


Okay, one more thing: We had a great trip to WDW a few weeks ago. Got a fabulous upgrade to Concierge Level for our 1 night at AKL (and can I just say that just once in your life, you need to do one night at Concierege at AKL-what an incredible experience-thanks Disney, once again you exceed my expectations!). CBR Pirate rooms not worth it, unless you like being in the middle of nowhere. Trip with only boys was a HUGE HIT! No fighting the entire week.

I had so much fun, except on Saturday at Epcot because of Food & Wine festival. It was so crowded with drunk adults I almost had a panic attack. Saw a large group of college age kids in T-shirts that said, "Blood Alcohol Experiment in Progresso Not Disturb". I was absolutely appalled. Took over an hour to push DS in wheelchair from Mexico to France at 3:00pm. Thank God he was in chair. I couldn't imagine trying to walk a child through the crowd of drunk, cigarette dangling, pushy adults there. Not Cool.

Anyway, we went to AK Sat. morning so DS could play the African Drums and see Nemo the Musical. There is a little area near Asia with a Cultural Learning spot with Exchange Students there and DS loves that spot. Two adorable ladies from Thailand and Indonesia were there. They ask if DS knows where they come from. He runs to the map and points out not only what country they are from, but the city as well. Then he proceeds to tell them his list of "Must See" places. "We've never seen an American child like yours before. You must be very proud!" was the response from the two very wide-eyed young ladies. And that, my friends, is why we go to Disney World.

Happy Halloween, guys! We are going as a Gravestone (DS) and a Zombie from the Revolutionary War (DD).

 

[GraceLuvsWDW]

Ooooh, upgrade to CL? Wow! How lucky. Sounds like your trip was a success except for the F&W, unfortuntely that festival seems to be turning into a drunk fest. Not too many good times left to go to WDW, although September continues to be a good time with low crowds.

ARD was yesterday. 2 Hours long. They started trying to get me to speed things up right away. There was a "general" there who led the meeting who I had never met and who had never met dd. Her main goal was to get the papers signed and get all of us out of there as quickly as possible. I had one person (the Speech therapist-which is odd because I never would have thought dd would qualify for Speech-she has excellent vocabulary) firmly on my side and a few other basic supporters. Everyone there insisted that until there was academic failure, no Sp Ed was warranted. It is a sad state of affairs when the school system model is one that waits for failure, then blames parents, etc. when the failure occurs.
They insisted that dd was "fine". I brought up 11%, 6%, 25% deficits and they insisted that due to 98%, etc to offset the deficits that the deficits were not an issue-that she has ability to compensate due to her being extremely "bright". Only the Speech Pathologist was strongly emphasizing these issues, and the "general" shut her down several times. They said "you need to leave the education to us and just be a parent". They said I wasn't able to volunteer in the classroom because they thought it would be too disruptive to dd. DD's teacher mentioned several issues including the fact that dd needs "more attention" than the other children. However, she said dd has normal social skills which completely contradicts what she told me in Parent-Teacher conference. They refused 504 Mods at the meeting too and said "Why do you even want them? We can do everything in the classroom without the mods." The Speech Path told me in a phone conversation before the meting that "only you can decide if this is the right placement for her." I took that to mean perhaps between the lines that putting her in a different school might be best. BTW, the speech path LOVED that I cited Tony Attwood, she said that was extremely relevant but that they wouldn't accept that material in te ARD. They did not. They kept citing TEA regulations that correlate with DSM, but I told them there are SID (Sensory Integration Disorder) kids in Sp Ed in Austin and SID is not in the DSM. They had no answer for that.
They generally had the attitude that they know my child better than I do and that they were the experts. I brought up the fact that NO ONE in that room knew my dd 4 months ago and that NO ONE in the room has had more than a few hours interaction with the exception of myself and dd's teacher who was mentioning issues but she seemed generally shocked by the test results and unaware of what was going on. She had not seen the report at all prior to the meeting.
They started the meeting with the Autism Leader going over everything that makes my dd not "autistic" in the SD's eyes. They then asked if I had any questions and I said yes, then they stated I could voice them after everyone else has given their reports but it never came back around to me to voice my concerns, the meeting ended before that occurred. They basically patronized me as the ignorant mother who needs to listen to the "experts". They brought up that many of dd's Assessments all say different things (ie Developmental Coordination Disorder, Anxiety Disorder, Aspergers, etc) and I said "Yes, but not one says NOTHING is wrong." They said they're not saying NOTHING is wrong just that nothing makes her eligible in the EDUCATIONAL setting.

Anyway, I was not strong enough nor informed enough to fight them. I signed the letter and made sure it did not say she was not a child with a disability. It only said she was a child not eligible. They did not give me a copy. They stated I had no other options.

Anyway, luckily I don't live in China, I have other options. I can pull her out of this school if I need to and perhaps I will go find a private placement that is more suited and more responsive to her issues. I really believe with some attention and support right now the issues might not be as severe in 3rd grade-on.

To make everything worse on my defeated feeling, dd cried and vehemently refused school this morning (I made her go). She is still afraid of the Friday Assembly. Poor girl, I have to fight the feeling that I've "thrown her to the wolves."

I feel like I've failed her.

 

[BeckyScott]

Oh, honey.

You always have other options. That's what Procedural Safeguards are.

You know what you're walking into.

I mean, I think if anything the one thing we do all have in common is we know that some battles are worth fighting and some are not. And you can't fight them all. And you have to pick the ones that are worth it.

And I'm not saying you should or shouldn't, I'm just saying that you're going to need to decide for yourself. "Is this a hill I'm willing to die on?"

I mean, I've got a hill in front of me, too. It doesn't go away, there are just different hills. I get so mad when I get an attitude from others when I'm trying to defend my kid. Well gosh, who else is going to do it? Apparantly they aren't. That's my job.

You have to believe that you're doing your best for her. You're trying. You're doing your best. Many parents wouldn't care, many wouldn't try, many wouldn't bother to educate themselves and be a pro-active advocate. That's why God picked you and not them.

I'm thinking The General must have been the SpEd coordinator for the whole district? If that is the case, putting her in another public school in the same town, she'll show up again.

I think that they always, very much on purpose, load the meetings so that there are much more of "them" than "you" and they are going to control the agenda. If "you" had stated you were bringing 25 people to back you up, they'd get 40 people from the school. That's just the way it is. My meeting with oldest DS, I requested the SpEd Coordinator, the math teacher (since that is the big problem), and the SpEd teacher. 3 of them 1 of me I can handle. But for some reason, all of his teachers ended up there, along with the Asst Principal (???? okay.... ) I was totally bulldozed and I've been doing IEP meetings for 6 years. The real irritant was that in a couple of his classes he's getting low-A high-B grades and even those teachers were dissing on him. Then I was informed that they only had 20 minutes til another meeting, and they proceeded to yap for the full 20 minutes then leave, and I wasn't finished yet.

I am just telling you all, with younger kids, there is a whole new thing that happens when the kids transition to middle school/ junior high. It's not pretty. They don't want hovering parents, and by hovering I mean "anyone that shows any interest in the child's education". They want the kid to be a grown-up at age 11, to advocate for themselves, and to just suck it up. I fought for that IEP for 3 years and the attitude I've gotten is that he needs to fit into the mold, asap, and if he doesn't then it's not their problem.

 

[GraceLuvsWDW]

I wanted to post a Dear Abby in the Suburban Chicago News:

"Special-needs kids need special parents

October 29, 2009

Dear Abby: On Aug. 10 you printed a letter from an aunt who was upset because her sister, the mother of a child with autism, doesn't have time to join in fundraising with her and the rest of the family. While I commend the writer and her family for raising money for autism research, that woman needs to cut her sister some slack.

Very few parents (thank goodness for them, though) have the emotional energy, not to mention time, to advocate for their child's special needs. I commend you for giving the writer of that letter the answer you did. I would challenge anyone who thinks he or she could "handle it" to walk a mile in our shoes. Our entire lives center around our children and their doctors' appointments, therapy, special schooling, adaptive equipment, etc. The last thing we need to hear is some self-righteous know-it-all putting us down for something we were hand-picked by God to do. -- Special-needs Mom in Alabama

Dear Mom: I heard from the parents of many special-needs children who echoed your sentiments. Read on:

Dear Abby: I am the mother of two boys with special needs who are around his age, and I can assure you that woman is already "very involved" in a way her sister cannot even begin to imagine. It is a labor of love that requires intense attention to their every action and potential need.

Perhaps "Raising Money" should spend an entire day being the primary caregiver for her nephew while trying to complete household responsibilities or work. I cannot tell you the number of times I have cried in my car out of sheer fatigue (I now carry tissue in the glove box).

The most charitable thing this aunt could do is to show up on her sister's doorstep with dinner, an offer to do the laundry, and a long, comforting hug. -- Cindy in Austin, Texas

Dear Abby: No one fully understands what a parent with a child with a disability goes through from day one. First there is the emotional aspect. We grieve. It's not the kind of grieving you do after a death. This is grieving that never ends. It cycles over and over. If you're not crying, you're angry. Some days you can accept and breathe; other days you just can't. Anything can set you back, and suddenly you're sobbing again.

Not only is there the day-to-day caring for the child -- feeding, dressing, hygiene, to name a few -- but also phone calls, meetings, doctor visits, therapies. When the kids are little, many of these things aren't too bad. But as they get older, larger, stronger, it breaks the caregiver's body and spirit.

There is also the problem of not being able to get needed services. In many states, once children are out of the school system and on the waiting list for adult services, they sit and languish at home with NO services until they qualify for accommodations. In some states that can be many years. And there's no portability of services between states, so if you must relocate, you go to the bottom of that state's waiting list.

Living with that, we often can't get or hold jobs. Day care is a huge problem. If that woman really wants to help, she should offer respite care and get involved with the waiting list issue, which is as important as research. -- Sonja in Colorado

Dear Sonja: In this time of draconian cutbacks everywhere, I hope our politicians will direct their thinking away from divisive politics and being re-elected to what must be done to help our most vulnerable citizens."


The "General" is listed on the Sp Ed website as an "Educational Diagnostician"
That woman did more to patronize me and quiet the important voices in that meeting than anyone! She was clearly the woman in charge of getting that paper signed!

I don't know what you mean by continuing on with the fight. Isn't the fight over? I don't have anymore options within the public setting except 504, which they are refusing. The advocate tells me she can get 504 no problem at all. What exactly does 504 deliver? What can that do to help my dd in this educational setting? Thanks for your help and support!

 

[BeckyScott]

Do you have a copy of the Procedural Safeguards?

Ugh. I have a school party to go to, I'll be back, let me find a link for you.

What I'm saying is you can contest it and take it up higher, if that's what you want to do. Sort of "lawyer-time". If you KWIM. It's not "over" unless you want it to be.

bookwormde! Help!

 

[bookwormde]

GraceLuvsWDW


You have tried your best to educate them; it is now time to start due process, for failure to properly evaluate your child under IDEA. It makes take several levels of this but it is sometimes what it takes.

Hang in there and make the filling as soon as possible. The educational classification criteria and the clinical criteria are virtually identical so getting the classification should not be that hard. Once you have the classification they may then argue about need but that is the next step (they are not supposed to intertwine the 2).

It sounds like you have at least 1 “ally” In the speech person and since they are responsible for the bulk of the non-academic curriculum for our children that is great.

bookowrmde

 

[GraceLuvsWDW]

They sent home the ARD results report in dd's backpack. They added an addendum which was not present at the time I signed and it is full of GROSS misstatements! So now I'm off to write a letter contesting the addendum and to find out what is GOING ON!

 

[C&G'sMama]

koolaid/C&G-

My oldest DS has "anger management problems", too.

And I am telling you, I don't know what to do to fix it, but you want to get it fixed before he is 5'8" and 150 pounds and puberty hits full-blown. Trust me.

I get very scared not that I can't get him under control at home, but that he's going to "lose it" at school or out in public and have big trouble on his hands.

What I try to do is this: Send him to his room, sometimes that will work and he will calm down. Or have him take the dog outside in the back yard. He really loves the dog, and that will calm him down. Sometimes he just wants someone to listen to him while he goes on a rant. However, when he does that, he does expect me to "fix" the problem and often it is something I can't fix, so that doesn't help.

I think what happens with my kids, both of them, is that they "keep it together" at school and then when they feel safe at home it all breaks loose. I feel bad for them, that it happens that way. But I know it's not a good thing either.

I just know it gets worse when they get older. Puberty is hard. Middle school and junior high-- you remember the dynamic there? I mean, seriously, I've blocked most of junior high because it was such a horrible experience. And things are harder now than they were "back in the day".

Thank you. We believe a lot of it is that he's held it together all day at school. We absolutely worry about puberty. Right now he's 6yo 4' 3" tall and weighs 90 pounds and he is strong. I took him kicking and screaming out of a restaurant the other night as he could not hold it together. I had met the family after work so we had 2 cars. He put his hands up to my neck and kicked me. He then proceeded to kick the seat the whole way home (but he kept his seat belt on as that is a rule) and screamed for most of it (about 20 minutes).

When we got home he went upstairs and was asleep within 10 minutes. I went out and walked for 2 hours on my scheduled Neighborhood Community with Police walk "thing". DP had a long talk with him. But, like you we worry he may hurt someone else. I did call the lady that coordinates the groups at the Behavioral Center as it had been a month since we've heard from them. She asked me to call with the dates and times we could do group (we gave all that information a month ago so we have a strange feeling our paperwork got lost). I got a call back today that they are putting together a group for Wednesday nights at 5:00.

We had a meeting at school today. The teacher says he's basically perfect all day. They are working on putting a social group together with some of the other children. We'll keep at it.

Hey all. Like Becky, things have been busy here, too. SO major hugs to Grace, Becky, and C&G's Mama for all the issues you have been facing lately. Our scheduled teacher's meeting is next week, so I might be pulling my hair out then. I just don't know.

I got a note sent home from Regular Classroom teacher that DS needs to vastly improve his oral "reading fluency". I know this is on some standardized test of some sort. But how can you make a kid read fluently when he doesn't even speak fluently? Funny thing is that my child reads what I call $.25 words (big or strange words) just fine but he sounds, um, Presidential when he reads those stupid "Dick and Jane" books they send home. I think it's more that he could care less about Dick and Jane and their insipid little adventures. When we got the note, my DH said, "Have they actually had a conversation with our son? He can't even talk in normal cadence. What do they expect?"

And they want him to be able to draw inferences from these same sort of simple stories and then write answers about it, but this proves to be a very tough thing to get DS to do. Funny thing is that he can make inferences all day long about, oh I don't know, Ancient Egyptian Mummies and burial techniques or Symphony Orchestra seating charts. Sigh.

Question: Do we want to raise children that will be smart, confident, interesting adults or do we want kids that peaked at Freaking Dick and Jane??????? Cause I'm not so sure anymore.

Special Ed teacher did tell me at Mom's Lunch day last week that she was going to try really hard to get DS to meet with the Gifted Teacher and have him tested. Apparently if he gets in Gifted in 3rd grade, he can still do a "pull out" and go to Special Ed and do his work at his level. She said only problem might be pacing of work. She thinks his behavior is better this year because of more challenging school work.

Glad to hear they have started social skills at your school.
I had the asthma attack when you wrote about the whole Dick and Jane thing. The kid can read at a higher level, why can't he work on his other skills sets reading about mummies??

Special Ed teacher is going to "try really hard". Do koolaidmoms and I need to come down, because we will. How about she will get him a meeting with the gifted teacher.

DS's teacher really is trying and is working with him. We had our meeting today and we were ready for a fight and it turns out they agree with us and she went over everything they've been doing with him. He is in a reading group with the top 2nd grade group. DS's teacher and the 2nd grade teacher are going to switch off with the group. He has a volunteer to help him with writing, a big weakness and is in addition to OT. Another volunteer does 3rd grade math with him one day a week. He doesn't like being "different" from the other kids so except for the reading he does most of this with the rest of his class,but he works out of a different book.

And to echo what you say he absolutely is calmer when the work is more challenging.

Good luck and

Keep us posted.

C&G and koolaidmoms (she's adding her 2 cents from the sidelines)

 

[GraceLuvsWDW]

Ok guys, bear with me here...I'm thinking out loud (in writing )...

I wrote a whole letter about how slanted the addendum is. It REALLY IS! They focused on every single splinter skill my dd has and IGNORED any mention of any issues. Ok, but then I started thinking (I'm not one to play games but maybe I'm being forced into it)....

WHAT IF...I didn't say ANYTHING about the assessment or the addendum at all. Then, when (or if) things go haywire at school I'll be able to point to this assessment and say "She WAS doing this, She WAS doing that, now she can't or isn't doing ANY of this". What if I use THEIR report to prove or "justify" regression of skills???? What if I can point to the report and say "She was fine THEN. What happened?"

Am I way out in left field here?

That popped into my head as I was about to send it, I thought maybe I should think about this.....


Any opinions???