Sensory Processing - Diagnosis and school??

[jackskellingtonsgirl]

Hello! I am hoping some of you might have some insight and suggestions for me!

DS13 was diagnosed with inattentive ADD in 4th grade. He is now in the second semester of 7th grade. Before now he has been an A/B honor roll student. This semester he is making an A in Band, and he is lucky to be scraping low C's out of his other courses. When we ask him what's wrong we get "I don't know."

The teachers have been less than helpful. The counselors revoked his 504 at the beginning of the year because his grades and test scores were so high. They said he doesn't need a 504. He takes Focalin XR, and we (after a meeting with the Dr.) just increased the dose over Spring Break hoping it would help get his grades back up. So far it has not helped.

Last night he said he doesn't want to be friends with anybody, he wants to be left alone. :scared1: When I pushed him to clarify that, he said his friends annoy him. When pushed a bit more he finally said he just gets overwhelmed and wants time to himself to clear his head.

As a preschooler he was tactile defensive and also had some auditory defensiveness. I thought he had outgrown it, but now I think he has some sensory issues that need to be diagnosed so we can treat them.

Anybody know if the school district can test for sensory stuff, or do we need to go private? What sort of professional diagnoses sensory things? We have a pediatrician and a diagnostician that we work with on the ADD. What sort of things can be done as far as modifications? He has a TERRIBLE time remembering to turn in his completed work, which results in lots of 0's. Someone on another thread mentioned her high school age DD has sensory issues and forgetting to turn in work is one of the "symptoms".

Please share your stories! Thanks! :)

[Piper]

As a teacher, I wouldn't trust the school district to test for anything!! I have seen too many children who need help just blown off.

EX: a child with echolalia, severe meltdowns, sensory issues, perseverating on one thing & more--The diagnostition said "Oh, he's just spoiled"--after a 10 minute observation -- refused to test. Several years later, the parents finally persued a private diagnosis--high functioning autism.....years of proper instruction lost!

A child who couldn't even match two objects out of a group of 3, speech delay, motor delay, no color ID (after months of teaching)--refused to test saying that she was just immature (child is now in life skills and thriving)

A child who threw up 5 -20 times in a 3 hour period (daily), no social skills, sensory avoidance, poor fine and gross motor skills -- "Oh, he just has a speech delay."-- now in special ed and doing well

All these examples are from years ago (different classes) in case the "teacher police" flame me.....but I could give you several current ones. In my experience, the school district is really failing our kids with challenges.

If it were my child, I would get private testing. If you can't afford it, do searches for funding..there are many places that test based on income.

[jackskellingtonsgirl]

Our private diagnostician thinks it would be better to start with some counseling sessions before we do anything else. She said we can go to an OT for an evaluation, but the treatment for SPD is a long process that may or may not be successful. She gave me the name of a guy, so I will give him a call on Monday (they don't office on Fridays) and see what he has to say.

[PoohBear543]

My DS is 4 and was diagnosed with sensory processing disorder when he was almost 3. An occupational therapist makes the diagnosis. He is a little older then when most are diagnosed but alot of kids are mis-labeled as having ADD or ADHD when it is really SPD. I would avoid reading information online or books until after the eval because part of it is a questionnaire and if you read a lot of info it could affect how you answer the questions. If he is diagnosed with this then I would read "The out of sync child" It's very interesting and informative. Good luck and beware most people don't believe it is a true disorder, (myself included at first- I'm even a PA) but since starting treatment, my son has truly improved and is now thriving in school!!!

[KirstenB]

Our schools don't do diagnoses. They will provide services, and will assess a child to see what the child's needs are, if there is a delay.

Even if they did do diagnoses, I'd go the private route in addition to that. My reasoning is based on the fact that the person likely to do a sensory dx is the OT. He/she already has a full day, working with kids who have existing IEP's. Here it might take a while to get "on the list".

Although I like our school district, it is small and rural. We have friends who've moved into the district, and it has taken 1-2 mths to get their child assessed for speech therapy. Then, the IEP meeting has to be scheduled, etc, taking more time.

[jackskellingtonsgirl]

After reading the bio of the guy the diagnostician suggested, I have decided he would not be a good fit for us.

I have a message in to a neuropshychologist and I will see what his recommendation is before I do anything else.

I will say I am tactile defensive and have some of the auditory things, too. I recognized it in DS when he was little, then I realized my aversion to being rained on or splashed or have air blowing on me is all the same sort of thing.

[LMC]

The reason they are telling you it may not be successful is because these type therapies get the most benefit being administered before age 6 yrs. I'll never forget when my son was 8yo and the doctor said "if he had gotten treatment"...blah blah blah, and I told him I tried for many years to get treatment and to get people to listen to me but they didn't so that was where we were then. But a neurophsyc should be able to help you. The problem you may have is they will want to do a full eval (you may or may not want that) and it can be very expensive. Insurance may or may not pay for it. I planned on insurance not paying so I was prepared to pay.

Our private diagnostician thinks it would be better to start with some counseling sessions before we do anything else. She said we can go to an OT for an evaluation, but the treatment for SPD is a long process that may or may not be successful. She gave me the name of a guy, so I will give him a call on Monday (they don't office on Fridays) and see what he has to say.

[bookwormde]

Discharging a child from a 504 or IEP because of high grades does not follow the regulations unless it can be clearly demonstrated that the non academic needs that were involved have “disappeared”.

Ask for a complete new IDEA evaluation for your child.

Schools do not make diagnosis, they just create educational classifications, so in addition to the school evaluation if might be a good idea to contact a developmental pediatrician for a medical review. If the diagnostician you work with knows about the sensory differentials and has not recommended an auditory processing evaluation then it is time for a new (competent) one.

You should also be aware that Focalin XR is not labeled for ADD (only ADHD)

Special concern should occur if you start to see any signs of aggression.

Here is a link to the prescribing information; you should reread it in light of your current situation.

http://www.pharma.us.novartis.com/product/pi/pdf/focalinXR.pdf

bookwormde

[BeckyScott]

All these examples are from years ago (different classes) in case the "teacher police" flame me.....but I could give you several current ones. In my experience, the school district is really failing our kids with challenges.


:worship: Thank you!

Regardless of whether or not it's late for intervention, getting an outside diagnosis would put you in a better position to get accomodations in place. And really it's never too late for intervention, it might be better to do it earlier but still some progress can be made. For an older child, sometimes even having a diagnosis validates them, that there's a word for how they feel instead of just being "dumb" or "a brat".

Oldest DS's IEP has a staff member going over his planner with him daily and making sure everything gets loaded into his backpack, etc, as one of his accomodations, along with extended time, alternative test setting, and a few other things. ;) His IEP is for OHI, which is the category ADHD would fall into if you had an IEP for ADHD. His grades were scattered like your son's, and one of the issues brought up was that he forgets to turn in things, loses things. They did LD testing and no LD's showed up, so the IEP wasn't based on that. I was concerned that if we didn't get something put in place now, next year he'll be at a different school, changing rooms between classes sometimes, and that whole disorganized thing would get 10 times more problematic.

[WheeledTraveler]

I agree with bookwormde that you need to also start meeting with the school about getting his 504 back because grades are not a reason to revoke a 504 and I'd say that if that was their excuse then he's certainly proven that without the 504, he doesn't get the grades and needs it back again. It sounds like they were trying to save themselves hassle and made your kid a casualty.

I also agree with the others that ultimately you're probably better off going private. It's worth asking your son's teachers (if they're the helpful observant types) if they've noticed anything, but it sounds like they may not be helpful.

Good luck!

[LMC]

With my ADD son (he is in 8th grade but this was implemented in 6th), I have it written in his IEP that the teacher or aide MUST write down his homework assignments in a Homework of space to use as opposed to those planners the schools give out. If it is not written in there, he is not responsible for it plain and simple until it is written down. He can't remember one minute to the next (has dyspraxia) so there is no way he can remember all his HW, teacher comments, etc by the end of the school day. The teachers are also aware that he has problems turning in assignments and after two years of re-doing assignments that I knew we did (cause we did it together as homework) they now accept it as "done" if I have signed off on the homework binder. This was a matter of contention between them and me but he was to work 10 times harder than the average student, and then to ask him to do it again because he lost it (and they don't want to provide a one on one aide although three of our doctors says that what he needs to succeed) then they have to allow some consessions. There are really simple things you can incorporate into the 504 plan and if they refuse to give another one, then get documentation from your doctor and notify them in writing that you want a re-eval done and their reasons as to why they won't provide the 504. When you get that you call a meeting and take their response with your doctors recommendations and tackle it from there.

[jackskellingtonsgirl]

Thanks to all for your input! :)

I am still waiting to hear back from the neuropsychologist (which is what I get for contacting him on a Friday prior to a holiday).

At the 504 meeting in October, 3 out of the 7 teachers showed up. They said they see no signs of inattention in their classes, and that was good enough for the counselors to revoke the 504. Um, hello? He is on medication to improve his focus. When his symptoms are properly managed he DOES focus! :headache: I felt railroaded by the counselors, and the teachers were no help.

The school personnel (ALL of them) keep telling me this is just normal 7th grade boy stuff. This just happens, part of growing up, not a big deal. Yet every article/book/pamphlet I have EVER read says a substantial drop in grades is a red flag for SOMETHING. I have never in my life heard that bad grades are normal 7th grade boy stuff. :rolleyes:

LMC - My DS loses things, too. Things he does IN CLASS. Makes me crazy.

This is what I found in the prescribing info for Focalin XR:
"For the Inattentive Type, at least six of the following symptoms must have persisted for at least 6 months: lack of attention to details/careless mistakes; lack of sustained attention; poor listener; failure to follow through on tasks; poor organization; avoids tasks requiring sustained mental effort; loses things; easily distracted; forgetful."

Focalin XR was the third med we tried and it made a HUGE difference the first year he was on it (5th grade). 6th grade wasn't bad, either, despite moving to middle school and having 6 different teachers. This year started off OK, but now we have these LOW grades. :confused3 So we'll see. Hopefully the neuro guy will get back to me early in the week.

[LMC]

[[/CENTER]LMC - My DS loses things, too. Things he does IN CLASS. Makes me crazy.[/QUOTE]

This was happening to my DS too and I told the school system that since they did not want him to have a one on one aide, then the teacher or shared aide was to make sure he did his class work. That there was absolutely no reason his class work is not being done unless he is totally lost (again the need for the aide) but that I NEVER wanted to see a zero on class work again as that is their job and I am not sitting in class with him.

I have enough documentation and testing to go to mediation and get a one/one aide but the principle did not want DS to be pegged as being different w/ an aide with him all day (I agreed as DS agreed he did not want to appear different, although it is obvious) so they are to make sure he is in inclussion classes and get the help he needs.

I know with the IEP, they are to provide "written prior notice" when they take a drastic change such as cancelling a plan. You need to do research and if the same IDEA laws apply to the 504 then send a letter to the special ed coordinator stating that they were suppose to give you written prior notice before that meeting to inform you of the changes they were going to propose and WHY. Now they have to put it in writing as to why they wanted to cancel the 504. If you have testing or other documentation or dropping grades that support an argument to not discontinue the 504 then I think you can easily get it reinstated at that point.

[jackskellingtonsgirl]

I spoke to the neuropshychologist. He was SOOO nice, really listened to my concerns. I am going to take DS in for testing ASAP - the Dr. was in the car when we were talking so he is going to check his calendar and get back to me.

5 years ago DS was hospitalized for some weirdness - his hands were shaking, he had strep, and they found a lesion in his brain. We think all 3 were unrelated - like I said, weirdness. Anyway, Dr. said the lesion may have caused cognitive impairment and that could be part of the problem with DS now. He is going to review the MRIs and see where the lesion was, how large it was, etc. I think having DS retested will be tremendously valuable. And then we'll see where we go from there. AT the very least, I will have new test results so I can tell the school I want a new 504.

[LauraVV]

Be careful with neuropsychs. Don't let them release any results until AFTER you've read the whole report. They can be worth their weight in gold OR they can sink your ship. I'd make sure you have gotten recommendations from others about your neuropsych. My kids have been to four different neuropsychs. Only one was even marginally OK.

Have you taken your child to an audiologist who specializes in CAPD?

Your school teachers cannot just cancel a 504.

Ask your PCP for a referral to a good OT for diagnosis and treatment. You can then get the SID (or whatever they call it today) diagnosis and treatment. Schools are not good resources for testing. Remember, for the most part, they employ overworked PT and OT techs, not the actual therapists (or maybe one therapist for the whole district).

Your health insurance should pay for this testing. You might wish to look at it under both health and psych benefits.

[jackskellingtonsgirl]

I am scheduled for an intake meeting with the neuropsych in a couple of weeks, then he will see DS for testing the week after.

This Dr. did come highly recommended by other moms. :) He is very highly respected among his colleagues and the hospital he is affiliated with is top-notch. I feel very comfortable with our choice.

We'll see what he has to say and go from there. I know when we had DS tested the first time that the diagnostician gave the report directly to me, and I scheduled a meeting with the school. It was my choice to share the results with them.

The guidance counselors (3 of them, who sort of ganged up on me) revoked the 504 because they claimed DS OBVIOUSLY didn't need it. The teachers who bothered to come to the meeting (3 out of 7) said they saw no evidence of ADD. :rolleyes:

DH and I are discussing whether we want to mess with attempting to run it through the insurance or not.

[LMC]

If it turns out your son has a brain lesion (brain damage) or TBI (tramatic brain injury) from what they find on the MRI then he can go on an IEP under other health impaired. Your new doctor may find some things that qualify your child for an IEP and you may get better results going that way than on a 504. Just be sure to ask alot of questions about school/iep's etc as these doctors usually have alot of knowledge in that area. Sometimes they do independent evals for school systems, or even assist parents in mediation with school systems so he may be a goldmine of information for your when you get your results back.

[jackskellingtonsgirl]

I met with the neuropsych this week, and DS will go see him next week. He is very thorough and asked me about things the original diagnostician never touched on. He has a good idea of things he wants to look at and talk to DS about, so I think this will be good.

In the meantime DS has managed to pull himself together somewhat. Maybe it WAS just "normal 7th grade boy stuff". At any rate, I want to pursue this round of testing because it won't hurt. I would hate to head off to 8th grade without a leg to stand on if I decide to push for a new 504 or IEP or whatever. :)

[SpecEdismyLife]

I think you are taking the best steps. As someone with a special needs child, as well as works with a special needs child in the school district, I can tell you what previous posters have said: never trust a diagnosis given by any school without getting a second medical opinion from an actual neuro-psychologist or a medical doctor. They hand out Autism diagnosis at our school like you wouldn't believe and I can tell you, some of these kids do not fall on the spectrum but appear to be that way due to questions on standardized tests, which is all these districts use to evaluate them for services. This is the same with ADD and ADHD and dyslexia. I also have a 13 year old boy starting 8th grade next year and just lately he has been spending more time on his own and has become more sullen and crabby. I'm thinking puberty, oh joy! You are making the right decisions in regards to getting outside opinions, good luck to you!

[GraceLuvsWDW]

Well, my DD is 5 (almost 6) and although your son is much older I just feel I have to chime in here. My frustration with the system is that there just isn't any defnite diagnostic tool for any Dr to say "that is definitely what the problem is". That's why you hear so much about misdiagnosis, etc. My DD sees a Developmental Pedi, a regular Pedi, an OT, and a child Psych all with differing opinions on what the "real" problem is. It is so very frustrating. I feel like I've already been on a wild goose chase of trying this med, then this med, and on and on most of the time with no help and usually with additional "side effects". It is a very frustrating ordeal, as I am sure most all of you know.

My DD is tactile defensive one minute and tactile seeking the next. She is practically anti-social because of it as she usually ends up accidentally hurting others due to her seeking. Her teachers are frustrated, I am frustrated and most of ALL she is frustrated. I just want to help her have the best life possible but I fear this "realm" of disorders: SPD, DSI, ADD, DCD, OCD is just nothing that can be accurately diagnosed. I hope and pray for a change in the future and also that SPD will be recognized in the DSM as a disorder.

Until then, we are all just trying to do the best for our children! And I truly believe that we, as parents who live with the child every day, are the best judges of what might be the problem and what might help. You can listen to advice and research on your own but you must rely on your intimate parental knowledge of your own child to make the best decisions.

Good Luck! I hope you get some help and your son continues to improve! :grouphug:

[jodifla]

Well, my DD is 5 (almost 6) and although your son is much older I just feel I have to chime in here. My frustration with the system is that there just isn't any defnite diagnostic tool for any Dr to say "that is definitely what the problem is". That's why you hear so much about misdiagnosis, etc. My DD sees a Developmental Pedi, a regular Pedi, an OT, and a child Psych all with differing opinions on what the "real" problem is. It is so very frustrating. I feel like I've already been on a wild goose chase of trying this med, then this med, and on and on most of the time with no help and usually with additional "side effects". It is a very frustrating ordeal, as I am sure most all of you know.

My DD is tactile defensive one minute and tactile seeking the next. She is practically anti-social because of it as she usually ends up accidentally hurting others due to her seeking. Her teachers are frustrated, I am frustrated and most of ALL she is frustrated. I just want to help her have the best life possible but I fear this "realm" of disorders: SPD, DSI, ADD, DCD, OCD is just nothing that can be accurately diagnosed. I hope and pray for a change in the future and also that SPD will be recognized in the DSM as a disorder.

Until then, we are all just trying to do the best for our children! And I truly believe that we, as parents who live with the child every day, are the best judges of what might be the problem and what might help. You can listen to advice and research on your own but you must rely on your intimate parental knowledge of your own child to make the best decisions.

Good Luck! I hope you get some help and your son continues to improve! :grouphug:

I hear you! It IS frustrating. Particularly dealing with schools and their personnel...these folks are oftentimes not very open-minded, forward thinking people. They've got their little boxes they like to stuff children into, whether they fit or not. Then they basically throw away the keys, leaving you stuck!

I can't tell you the number of people who've I've talked to who have had their child mislabeled by the schools. A couple parents I know were told their children were mentally retarded....these same kids are now off to college, one on an academic scholarship, studying to be a developmental pediatrician, probably so he can help stop the madness of what almost happened to him. What these kids really had was a language disorder...once their language came in, their "mental retardation" went away.


Have you read The book The Mislabeled Child? Fascinating stuff it there by two pediatric neurologists. They are seeing mislabeled children ALL THE TIME!

[mechurchlady]

I call myself a neurovariant as I could easily fall into several categories. I agree that there is not set tests to show specifically what someone has unlike TB, pneumonia, broken bones, and the flu. As we neurovariants get older we tend to adapt to society and struggle as best we can. This then leads to some clues being hidden like picking and chewing while other issues might not even be considered deviant like draining liquid from a plate, avoiding certain food, or like my mother who has lived in darkness for years with a 40 watt light bulb.

It is so easy to stick kids and even adults into labels even if the person does not totally fit. What if someone is 20% OCD and 80% spectrum? What if the person is allowed to let the OCD get out of control to the point that it is 90% OCD and 10% spectrum? What if society shuns a person and makes them an outcast because of a behavior like chewing, nail biting, excessive talking, etc.? That person may hide the behavior thus changing the diagnosis. I look at the list for SID/SPD sensory issues and most fit me to a T and some took me a while to uncover as I had suppressed those things as some things are not allowed in public.

I hope everything turns out alright and never give up hope. Never stop studying and looking for answers and help. It will be a never ending battle between the NV and the NT who cannot comprehend what it is like to be NV. It will be a never ending battle to get things done properly. It is a sad thing to say but that is what I see over and over from people on these boards. It can be NV related or can be other health issues.

Sending you hugs and dole whips
Laurie:woohoo::grouphug:

[jackskellingtonsgirl]

I will say after seeing DS's most recent report card I kind of think his original diagnosis of inattentive ADD probably is accurate. I also think he probably had "normal" 7th grade boy stuff happening. Distractions from peer stuff and maybe some "crush on a girl" stuff that wouldn't be impacted by Focalin. Increasing his dosage DID improve his grades in 5 out of 6 classes, so it appears to have been helpful. I know he is ready for summer - we are ALL ready for summer.

The neuropsychologist suspects some sort of "executive function" delays may be part of DS's problem. We'll see what the tests show. :)

It is hard to know what all is involved sometimes. Nothing is very straightforward, and then differing opinions from professionals make it all worse.

[bookwormde]

It is interesting that your neurpsychologist suspect EF delays. This is actually not at all the same as EF differentials. Just to give you the basics, delays are caused by any of a great number of factors, and limits the processing efficiencies of a typically “wired” mind. EF differentials come from a mind that is “wired” significantly differently. In the case of spectrum genetics, this most commonly means that instead of a linear, discriminatory memory and processing system, the individual have a non-discriminatory, non-linear (often seen as visual) memory and processing system. In the simplest practical form information is taken in and instead of filtering it and only “storing” what is decided to be “pertinent” everything is attempted to be remembered (the whole picture). The discrimination and “preprocessing” is so innate (automatic) for most typical people that they do not even realize that they are doing this. Analysis is also done if a similar manner where a big “picture” is built from all known facts, not just those initially “filtered” and outcomes are based on this broader “data set”, this is why it is surmised that it take significantly more brainpower (IQ) to effectively “run” a mind with this neurovariation. This differential is often confused with inattention, but is really at its core just a processing differential. Since much of society and particularly our educational system is heavily biased to linear input and processing, this causes significant issues for people unless adaptations and accommodations are made for these variations. This good news is this differential is why such a very high percentage of inventors, engineers, theorists and other highly creative people have indications of these autism genetics.

A good auditory processing evaluation is usually the first place that indications of this variation show clinically measurable indications. Unfortunately like so many things in this area the science if advancing very rapidly so it is hard to find clinicians who are fully versed.

bookwormde

[GraceLuvsWDW]

I call myself a neurovariant as I could easily fall into several categories. I agree that there is not set tests to show specifically what someone has unlike TB, pneumonia, broken bones, and the flu. As we neurovariants get older we tend to adapt to society and struggle as best we can. This then leads to some clues being hidden like picking and chewing while other issues might not even be considered deviant like draining liquid from a plate, avoiding certain food, or like my mother who has lived in darkness for years with a 40 watt light bulb.

It is so easy to stick kids and even adults into labels even if the person does not totally fit. What if someone is 20% OCD and 80% spectrum? What if the person is allowed to let the OCD get out of control to the point that it is 90% OCD and 10% spectrum? What if society shuns a person and makes them an outcast because of a behavior like chewing, nail biting, excessive talking, etc.? That person may hide the behavior thus changing the diagnosis. I look at the list for SID/SPD sensory issues and most fit me to a T and some took me a while to uncover as I had suppressed those things as some things are not allowed in public.

I hope everything turns out alright and never give up hope. Never stop studying and looking for answers and help. It will be a never ending battle between the NV and the NT who cannot comprehend what it is like to be NV. It will be a never ending battle to get things done properly. It is a sad thing to say but that is what I see over and over from people on these boards. It can be NV related or can be other health issues.

Sending you hugs and dole whips
Laurie:woohoo::grouphug:

mechurchlady:
It is very interesting to read about these issues from your viewpoint: the view of an adult having struggled with these issues for so long. Would you mind if I ask you a few of your opinions?

Looking back on your life and the struggles you've encountered, what could your parents have done to help you with your struggles? Treating you as normally as possible? Sheltering you from excessive stimuli? Teaching you that you were different and teaching you not to be ashamed of it? I am very interested to see with your hindsight what suggestions/guidance you might give a parent of a NV child.

I know that every child is different but with your long history dealing with these issues what did you find most helpful? OT? Meds? Psychological counseling? What else?

I, like most of us here, have very limited understanding and knowledge of what is like to be a NV. I suffer watching my daughter endure her struggles, especially during an extremely hard day when she almost acts like a wild animal backed into a corner: her reasoning seems to fade and give way to primal self-preservation instincts. I don't know how to calm her at these times. I don't know what is best for her, maybe you could help me with your insight?

I really appreciate your viewpoint!

Thanks!
:grouphug:

[saveaquarter]

mechurchlady:
It is very interesting to read about these issues from your viewpoint: the view of an adult having struggled with these issues for so long. Would you mind if I ask you a few of your opinions?

Looking back on your life and the struggles you've encountered, what could your parents have done to help you with your struggles? Treating you as normally as possible? Sheltering you from excessive stimuli? Teaching you that you were different and teaching you not to be ashamed of it? I am very interested to see with your hindsight what suggestions/guidance you might give a parent of a NV child.

I know that every child is different but with your long history dealing with these issues what did you find most helpful? OT? Meds? Psychological counseling? What else?

I, like most of us here, have very limited understanding and knowledge of what is like to be a NV. I suffer watching my daughter endure her struggles, especially during an extremely hard day when she almost acts like a wild animal backed into a corner: her reasoning seems to fade and give way to primal self-preservation instincts. I don't know how to calm her at these times. I don't know what is best for her, maybe you could help me with your insight?

I really appreciate your viewpoint!

Thanks!
:grouphug:


My husband has Asperger's and is diagnosed with SPD as well. If you like, I can pose these questions to him for you as well.

[GraceLuvsWDW]

My husband has Asperger's and is diagnosed with SPD as well. If you like, I can pose these questions to him for you as well.

That would be much appreciated! Thanks!

[mechurchlady]

mechurchlady:
Looking back on your life and the struggles you've encountered, what could your parents have done to help you with your struggles? Treating you as normally as possible? Sheltering you from excessive stimuli? Teaching you that you were different and teaching you not to be ashamed of it? I am very interested to see with your hindsight what suggestions/guidance you might give a parent of a NV child.

I know that every child is different but with your long history dealing with these issues what did you find most helpful? OT? Meds? Psychological counseling? What else?

I, like most of us here, have very limited understanding and knowledge of what is like to be a NV. I suffer watching my daughter endure her struggles, especially during an extremely hard day when she almost acts like a wild animal backed into a corner: her reasoning seems to fade and give way to primal self-preservation instincts. I don't know how to calm her at these times. I don't know what is best for her, maybe you could help me with your insight?

I really appreciate your viewpoint!

Thanks!
:grouphug:
Even 10 years ago many neurovariant kids were undiagnosed or misdiagnosed. At the time I was born there was not much done for kids like me. My mother back then could have fought for testing instead of letting me see the school psychologist and do testing but get nothing done. I know that she did not understand that anything was wrong with me because she does not know she is damaged goods. My father was out of the loop and I feel he moved in to keep an eye on me as them two rarely got along.

what can a parent do for their kid? FIGHT, LEARN, STUDY THE KID.

Why does the kid fidget, bite, fight, cry, etc.? Protect the child from the triggers then slowly build up the triggers so the child will not live a sheltered life. I go into my darkness when things are not fair, when I am sick, and when I am tired. I stopped play Pogo's Monopoly as it is so NOT FAIR. I rest and walk away from things when tired. I know my triggers and people like Sue, Mary Jo, bookworm, Becky, Nicole and others here know my weakness and are there for me as are others online on other sites. I get by with a little help from my friends.

Meds can help IF the child is properly labeled with the right diagnosis and the problems are clearly a result of neurovariancies. A child may be hyper because they are reacting to stress, from food allergies and high sugars. A child might not do homework because the kid needs glasses, hearing aids, has dyslexia, hurts when they write with a pen, or maybe is passive aggressive. Occupational therapy may be needed to help the kid deal with the neurovariances. Therapy is key to helping neurovariant kids. Adjusting schooling so the kid thrives helps. If a kid has OCD like tendencies then work with that or if the kid is hyper then work with that instead of making the kid fit the mold. You have a round peg in a triangular world so you need to slowly make that round peg fit into that triangular world.

Yes, it does hurt me very much to see my mother curled up like a child about to be beat. Yes, it does hurt emotiionally when I repeat the same thing over and over and over or when her priorities are over mine and she throws fits if I go to the bathroom before getting the newspaper. IT HURTS. All you can do is get the right counseling, therapy, prevent as much as is possible and then roll with it and celebrate the little good things. I am so happy that mom made dinner without me.

As an adult neurovariant who slipped through the system I have a few things to say. I am always in trouble because I was not given coping skills as a child. Children neurovariants can be rewired if given the proper therapy, in theory. When people hunt me down and push my buttons I get in trouble. I have to deal with road rage and got that under control. I learned to use a plastic straw to deal with nervous energy. I barely finished 2-year college and should have a great job earning $50000 a year but failed as I was short, fat and ugly and talked funny and was weird. Maybe if I had training I would have gone far but I shut down. If I had the training as a baby or toddler then I would have been able to deal with social issues better.

There are a lot of what-ifs out there for me and that is the past. Now I work on researching my neurovariancies, learning tricks to get around the neurovariancies, and with help on this board have started rewiring my brain so I can handle social issues better. A strong network of strong people helps. I focus on my good points and remind myself I am not a bad person but just miswired. On this board there is a lot of ego stroking and reminders that we have had a small step forward in our lives or the lives of those around us. That so helps the neurovariant, the social group that rolls with the punches then comes back and remolds the neurovariant to fit the triangular world while making the neurovariant feel good and feel that they can fit into the world somewhere.

'hugs
Laurie:hug:
hope that answers your questions

[Disneyformykids]

In response to GraceluvsWDW: Your DD seems VERY happy with Princess Aurora!

[GraceLuvsWDW]

Even 10 years ago many neurovariant kids were undiagnosed or misdiagnosed. At the time I was born there was not much done for kids like me. My mother back then could have fought for testing instead of letting me see the school psychologist and do testing but get nothing done. I know that she did not understand that anything was wrong with me because she does not know she is damaged goods. My father was out of the loop and I feel he moved in to keep an eye on me as them two rarely got along.

what can a parent do for their kid? FIGHT, LEARN, STUDY THE KID.

Why does the kid fidget, bite, fight, cry, etc.? Protect the child from the triggers then slowly build up the triggers so the child will not live a sheltered life. I go into my darkness when things are not fair, when I am sick, and when I am tired. I stopped play Pogo's Monopoly as it is so NOT FAIR. I rest and walk away from things when tired. I know my triggers and people like Sue, Mary Jo, bookworm, Becky, Nicole and others here know my weakness and are there for me as are others online on other sites. I get by with a little help from my friends.

Meds can help IF the child is properly labeled with the right diagnosis and the problems are clearly a result of neurovariancies. A child may be hyper because they are reacting to stress, from food allergies and high sugars. A child might not do homework because the kid needs glasses, hearing aids, has dyslexia, hurts when they write with a pen, or maybe is passive aggressive. Occupational therapy may be needed to help the kid deal with the neurovariances. Therapy is key to helping neurovariant kids. Adjusting schooling so the kid thrives helps. If a kid has OCD like tendencies then work with that or if the kid is hyper then work with that instead of making the kid fit the mold. You have a round peg in a triangular world so you need to slowly make that round peg fit into that triangular world.

Yes, it does hurt me very much to see my mother curled up like a child about to be beat. Yes, it does hurt emotiionally when I repeat the same thing over and over and over or when her priorities are over mine and she throws fits if I go to the bathroom before getting the newspaper. IT HURTS. All you can do is get the right counseling, therapy, prevent as much as is possible and then roll with it and celebrate the little good things. I am so happy that mom made dinner without me.

As an adult neurovariant who slipped through the system I have a few things to say. I am always in trouble because I was not given coping skills as a child. Children neurovariants can be rewired if given the proper therapy, in theory. When people hunt me down and push my buttons I get in trouble. I have to deal with road rage and got that under control. I learned to use a plastic straw to deal with nervous energy. I barely finished 2-year college and should have a great job earning $50000 a year but failed as I was short, fat and ugly and talked funny and was weird. Maybe if I had training I would have gone far but I shut down. If I had the training as a baby or toddler then I would have been able to deal with social issues better.

There are a lot of what-ifs out there for me and that is the past. Now I work on researching my neurovariancies, learning tricks to get around the neurovariancies, and with help on this board have started rewiring my brain so I can handle social issues better. A strong network of strong people helps. I focus on my good points and remind myself I am not a bad person but just miswired. On this board there is a lot of ego stroking and reminders that we have had a small step forward in our lives or the lives of those around us. That so helps the neurovariant, the social group that rolls with the punches then comes back and remolds the neurovariant to fit the triangular world while making the neurovariant feel good and feel that they can fit into the world somewhere.

'hugs
Laurie:hug:
hope that answers your questions
Thank you so much for your candid response. I want to get my DD all the help she needs but so often I feel as though all roads lead to further confusion. My DD doesn't deal with things most people deal with easily-a lot like what you mention with things "pushing your buttons". Sometimes leaving a place throws her into a frenzy, or not being able to write like everyone else, or noise disturbs her far greater than most. I struggle with wanting to shelter her and wanting to make her fit into the mold as you put it. We do OT, see psychologists, specialists, try meds all with very little improvement. What may work wonders one week, ceases to work at all the next. I read a book on SDP and say "that's it!" then I read a book on ADHD and say "that's it" and so on and so on. Her Dev Pedi says it's a developmental coordination disorder and anxiety disorder, then the OT says SPD, the child psych says OCD and ADHD. UGGGH! I just want the severe episodes to get better no matter what it's called. I guess you are saying to not give up, be an advocate for the child, study the child. I will do that. I guess I just struggle with the desire for someone to say "Aha! I know what will help". You're right, having people who can somewhat understand the difficulties helps, that's why I turn to DISboards and other SPD groups with mothers who understand and don't dismiss everything to lack of discipline.

I hope things get better for you. I REALLY appreciate your response and your viewpoint.

[GraceLuvsWDW]

In response to GraceluvsWDW: Your DD seems VERY happy with Princess Aurora!

Yes, she LOVES Sleeping Beauty.

Welcome to the DISboards.

[h518may]

Thank you so much for your candid response. I want to get my DD all the help she needs but so often I feel as though all roads lead to further confusion. My DD doesn't deal with things most people deal with easily-a lot like what you mention with things "pushing your buttons". Sometimes leaving a place throws her into a frenzy, or not being able to write like everyone else, or noise disturbs her far greater than most. I struggle with wanting to shelter her and wanting to make her fit into the mold as you put it. We do OT, see psychologists, specialists, try meds all with very little improvement. What may work wonders one week, ceases to work at all the next. I read a book on SDP and say "that's it!" then I read a book on ADHD and say "that's it" and so on and so on. Her Dev Pedi says it's a developmental coordination disorder and anxiety disorder, then the OT says SPD, the child psych says OCD and ADHD. UGGGH! I just want the severe episodes to get better no matter what it's called. I guess you are saying to not give up, be an advocate for the child, study the child. I will do that. I guess I just struggle with the desire for someone to say "Aha! I know what will help". You're right, having people who can somewhat understand the difficulties helps, that's why I turn to DISboards and other SPD groups with mothers who understand and don't dismiss everything to lack of discipline.

I hope things get better for you. I REALLY appreciate your response and your viewpoint.


Hi. I have been reading your posts and you said something that I so understand. I also want someone to finally know how to help my DD.

Background: I have two children DS 5 and DD 3. Both have SPD. With DS he is sensory seeking and he is easy to understand with what he needs for his body, sometimes the seeking part can drive me nuts, but I at least understand some ways to help him.

With DD she is SPD, verbally apraxic, has poor muscle tone and vestibular problems. To me most of this is different forms of the the SPD, so basically she has modulation problems, vestibular problems and motor planning problems. My problem is with the professional people that evaluate her. One group said she has no SPD traits at all, her OT at the time was livid over this evaluation. I have had two speech therapist agree that she has Apraxia, and two other people tell me she doesn't, there reason didn't make lots of since. Like the neurologist that said she couldn't be apraxic because she has other cognitive delays. So no child with a cognitive delay can have a motor planning problem, didn't make any since to me. But in all of this I really just would like for my DD to talk, she is 3.5 and has never said mama. It is nice at times that I know that others know what I am dealing with. I have so many friends that just don't understand it is refreshing when people do understand.

[saveaquarter]

That would be much appreciated! Thanks!

J wrote this out for you, and I'll interject a few of my own comments in parenthesis and italics, (like this). We both got a little verbose in our answers, sorry about that! I hope that it's helpful.

"Thank you for giving me an opportunity to answer those questions for you I'm always open to any more.

And before I start, I want to make it clear that I mean no offense to any parents who may do things differently than I think is ideal. Everyone does what they think is best. I'm just giving my opinion on my own experience with Asperger's. Hopefull it will help. :)

I was not formally diagnosed with Asperger's until much later in life. But, I was diagnosed with a ton of other problems that, all wrapped up, equalled Asperger's. I'll start with the positive things my mother did for me. She was a huge advocate for me at school. I didn't even realize the things she was doing for me until I reflected on them as an adult. I was in speech from the second day of kindergarten onward, and when certain things caused me trouble (I still cannot tumble, cartwheel, or flip over a bar) she would insist that after whatever evaluations they were performing on all of the kids were done that I be left alone about it. I grip my pencils improperly, and the teachers forced that issue until I resisted handwriting. My mother bought pencil grips to avoid the callouses on my hand and said that was enough of that matter. Oddly enough, I have managed to function just fine as an adult without tumbling and my handwriting has never been called messy."

(he has the most perfectly neat handwriting I've ever seen)

"She made certain I was tested for the gifted and talented program via verbal testing, instead of the usual written test, and when there were teacher conferences (in 3rd grade I, a Jew, wrote a graphic story about the cruxifiction when asked to do a paper on my favorite part of Easter) she did not blow it out of proportion. She did, however, make me rewrite my 5th grade paper on "What I want to give the world for Christmas." My original answer was truthful. "I want to give the world a second chance because we have messed it all up with all of the wars and death and dying, etc." It turned into "I would like to give the world a Coke." She still has both. My whole point in this is she knew which battles to fight, and how to fight them, so that I got both a good education and to be ME. It worked. I graduated from Duke University."

(May I also interject, he is smart as all get-out. I have been trying to encourage him to go back to school to pursue something he's been talking about for as long as I've known him- his masters and doctorate.)

"She bought me books, fostered my love of animals by allowing me to bring in every injured or homeless animal I saw, and let me leave places that were too loud. I am a lot like your daughter. Sounds send me into fits to this day. I just can't process it. My wife can probably tell you enough to fill a book on my fear of thunder and lightning cracks. It's debilitating. While my mother helped me avoid it, my dad did the opposite. He wanted me to be normal. He still wants me to be normal. He would set off firecrackers to help keep me from being a baby.

Which brings me to what I am afraid will offend some. No amount of therapy is going to change how your children think. It just teaches them to pretend they are normal. And while yes, there are times you need to know how to function in society, I think it's crazy to think we should always adapt. The biggest thing I would say is teach your kids to stand up for themselves. Sometimes it's ok to ask someone else to adapt to them. Not every time, but sometimes. A huge example of this is with my medical procedures (I have aplastic anemia and systemic lupus). I did not know I could say how I preferred things. Once I learned I could ask them to adapt, they did, and it works better for all of us."

(I want to elaborate on this a bit. We are very fortunate in that we have two advocates in the hospital we go to, our closest friends are both radiologists there. They help ensure that some of these things happen. He only sees doctors there that are familiar with him, and how his mind works. Only one nurse is allowed to draw his blood, because she is the only one who knows how to do it without blowing out half a dozen veins. All his procedures are explained in advance, no matter how small or simple. Very easy, simple adjustments that have turned hospital visits from a total nightmare into something routine and easy to accomplish.)

"The caged animal thing is truly how it feels. I literally freeze when I'm in a stressful situations with no way out. Being told I have to do something often causes the same trouble. When possible, give her choices. If something has to be done, allow her input into HOW it can be done. Guidance is important, of course, but mandates stress everyone.

Also, the tantrums are almost never about what is presently happening. Asking leading questions can help. Allow her to talk about it, but start off easily and then dig down. My wife is wonderful at that, so I'll let her give you her tips."

(It took me a while to learn this one. I try to follow a pattern. It doesn't always work, but more often than not it does. I take him someplace quiet, usually into our room. We close the door, sit or lay on the bed, and I talk to him soothingly, and ask a few leading questions while he calms down enough to express himself to me. We talk through the things that are bothering him. It's generally one core issue that may have planted itself days ago, with other little things here and there, that can be ultimately set off by something as seemingly insignificant as knocking over a glass.

The most important thing to remember is, while that tantrum may not be immediately logical to you, once you coax the true source out of your child, it'll all make sense. I'm going to use an example I observed in one of my brothers, who is on the moderate to severe end of the spectrum, a few months ago.

He had a baseball game to go to, and when asked to put on his uniform, he began screaming and crying about how itchy the shirt is, and how he could NOT wear two shirts in spite of the cool weather and the assurance that many other children would be wearing two shirts as well. This progressed to what probably was, to my stepmother, incoherent screaming, but as I listened I picked up on the source. That morning, his brother had been mean, and threatened to break his favorite toy. His other brother had told him that he was bad at baseball and wouldn't be able to play on his own. The fact that the uniform was uncomfortable was just the culmination of two other far more upsetting events earlier in the day, and not really the source of the tantrum at all.

We all experience to a certain extent. We all have days when everything seems to go wrong. The difference being, we have some way to unwind and relax and push it all out. Those on the spectrum typically lack the natural ability to do that. They need to be guided through the process by someone who is patient enough to do so.)

"Schedules. I live by them. I put the most mundane things on them, like "wake up". I like checking things off as I get to them and knowing what's coming next. It literally gets me through the day. I even schedule my free time! Too many things at once makes things "noisy" in my head. By breaking down even the most complex task according to what I think are important steps, I get things done.

I also review social interactions. It helps me figure things out. This is a big thing I'd recommend any parent assist their kids in doing. I may rehash something for days, but once I understand why it happened and how it happened, I can go about thing easier the next time. I struggle the most with people saying one thing and doing another. I do not mean circumstances changing, making what happens change. I mean the lying. Even the little white lies throw me for a loop. If ever I find a way to deal with that, I will let you know.

A word of caution. Meds can be very dangerous, especially when being given for things like adhd. They can make other things, like asperger's, worse. If you, as a parent, feel they are doing nothing, or hurting, stop them. I was recently put on one that made me want to crawl out of my own skin. She can't verbalize that feeling to you yet, so it may come out in other ways. Counseling helps if you get the right one. The wrong ones can be awful. I'll tell you my most recent horror story if you're interested."

(May I say, it's a doozy. It's fortunate I was unable to be present at that appointment, or Dr Goodfornothing would have needed a new nose.)

"I'm always willing to help, so feel free to ask me any questions you would like."

[Forevryoung]

I'm going to say that Saveaquarter's husband sounds a lot like myself... actually it scares me because nobody believes me that "that is me."

I'm so good at coping that when I can't cope any more and meltdown, it doesn't make sense to anyone. I do nearly everything Saveaquarter does to make it through my days from the lists to the talking out meltdowns (except I'm not sensitive to noise) because that's the only way I've ever done things... I've learned what works and stuck with it. My success is through hard work and a lot of luck.

I told an ex boyfriend who was going to grad school for social work at the time that I thought I had Aspergers/SPD. He laughed and said "noway." Not that that is the final say, but it definitely sticks out in my head.

But, I don't know if I should even try to get someone to take this suspicion seriously- any thoughts? Definitely huge positives and negatives!

[mechurchlady]

It would be nice for the world to adapt to me but I gave up on that as a kid. Few people are willing to adapt to me and my quirks. I was so nice to eat at the Festival a dinner were I made it through without being much of an outcast. I gave up on wishing for the world to adapt to me.

I adapt as that is the only way for me to survive. Schools gave up on trying to make a fat kid do gymnastics. Very few compromises if any. I just floated as best as I could.

Jake has strong words that I myself could never say. It is hard for me to explain things as I am so busy hiding my neurovariancies or trying to swim in a sea of hungry sharks. I find that some chat rooms help calm me down. Being around people helps me as I need that so much. I also make a ton of notes and list and even have a program for auto filling passwords and stuff.

I always thought it was traumatic birth but now finally know mom has SID too. My handwriting is atrocious and mom had to type my homework in junior high school. I love what Jake wrote as it is nice to hear from a person who has Asperger or Autism eloquently explaining things in ways I cannot. I am abnormal for neurovariants because there was not testing, I hide a lot of things, and have adapted to life so as to appear normal.

It is sad that the NT society demands we fit their world but they will not fit into our world. I think the bestest thing about neurovariants is that they tend to be nicer people who are more in tune with nature/God/whatever and see things differently than the NT who demands people wear make up, have perfect hygiene, perfect clothes, perfect manners, talk in certain volumes and tones, and other stuff that I do not understand how it is so blooming important. Neurovariants tend to focus on the inner being than the outer person.

Big hug to Jake for a great post.

Laurie

==============

I watched with Mom Lion King 1 1/2. The memories overwhelmed me to tears. Why am I so bitter toward neurotypicals? Beacause since I was in kindergarden they have made me want to be part of them. School books never talked about characters that were different. They all were white, mostly male, and middle class at least. We never saw the ghetto, barrio or trailer parks in our books. We rarely got expsoed to neurovariants or so called abnormal behavior like nail biting, OCD, rocking and picking.

One of the school outcasts was V. and eh was a towhead tal lanky boy who tended to walk on his toes. He pretended to be a monster but he was the sweetest little boy. 18 years later he commited suicide in jaill after being accused of horrid and unthinkable crimes. He was driven to the darkness by kids who made fun of him, taunted him, made him an outcast, and even shoved him into trash cans. He met Robby who scared everyone in school. Most of us do not remember much but that Robby was scary and few if any pictures exist of him. Robby led V. into the satanic world and from there V. met the scum of the earth.

I ama very bitter person as I have been on the receiving end and have seen a sweet little boy become a monster because of him being shunned, an outcast and abused by classmates.

Honestly why do I crave being normal? After seeing so many suffer since I was a toddler. Probably because that was the norm and what I was supposed to want to be. Like women who used to pluck their eyebrows then paint them over, that was the norm.

I like talking to bookworm here and to Jake at Pogo because they are real people who do not care about how I smell or look but my God given gifts. I have some wonderful gifts from being a neurovariant. I just need to see them and remember I am a good person and need to forgive those who hurt V and drove him to the darkness. If anyone wants to know who V is please PM me. He has been gone nearly 30 years now, sigh, and I remember his golden days when he still was a kid and teen not a monster.

I hope this is not to graphic, mods if it is please feel free to delete the post.
I miss V so much and blame myself for not standing up for him.:sad1:

[bookwormde]

Saveaquarter,

Thanks for getting your DH to write this (and him for writing it) and for your editorial clarifications and experiences.

I really give a concrete example of how much difference a parent can make in a child’s life (even back in the “stone ages”).

Even with having “lived” much of what we discuss here at some level and having a, what am sure to many, is an annoying level of certainty in my opinions, it is nice to “hear it” from someone else with similar experiences.

As to people lying thing, I have rationalized it to a great extend but lying (all the way from white lies to the ones that are done with to intent to harm) still from a core emotional level is quite “grating on the nerves”. Rationally I know that it is innate and is virtually a necessity due to the social constructs of the “clannish/tribal” wiring and the overwhelming drive to have ongoing societal social contact, but is still seems sad and a highly inefficient way to live.

I have a question for your DH, does he find pronouns (or missing but assumed ones) to be an inaccurate way to communicate and require additional effort to place them in the proper (socially based) context, and for us then subject to misassumptions, which can lead to “awkward” moments. Working with DS has made me realize how often I can not make this distinction with certainty and how in many situations I avoid “joining in” since a misinterpretation can be quite “socially awkward”. I think I drive my mostly NT DS crazy with this since if he asks me “can you put my shoes on” I have to of course give him the aspire answer of “I do not think they will fit me” (with a smile). He does not think it is funny.

Oh yea, he must have had a special mom if she was able to get him to give up on telling the world how stupid they were and that they needed to “get their act together” when it comes to war and lack of concern about death and dying, no way I was letting that go at that age.

Thanks again and let DH know that he can be sure that it is very helpful to parents and that it will make a “difference” in at least a few children’s lives.

Oh yea, when I get around to writing a book (along with about 100 other “retirement projects”) is it OK if I anonymously quote him.

Bookwormde

Sorry to the OP as I know are somewhat OT but it does all “tie together”

[GraceLuvsWDW]

My, you guys, may I say that when I have a problem coming to the DIS most always gets me the input that I need! Thank you so much for exposing yourselves for our benefit. It truly makes me saddened by all that you must endure, just as with my DD.

With regards to your suggestion about going to a calm place to quietly probe for what may be the true problem, I guess this is where our problem lies. Perhaps my DD is too young to appropriately express what the true problem is and perhaps I, as her mother, am not intuitive enough to figure it out. Last week she had a major episode when her friend, who was over visiting needed to leave. She ran upon him with his back turned and out of nowhere hit him as hard as she could on his back. It really hurt him, his mother was there, and of course I was appalled as such a violent attack. I sat her down in a chair and told her not to move while I sent the child and mother home. As she sat there, she escalated further and further into incoherancy until she was screaming that she wished everyone were dead. This was very frightening to me! She was hurting herself, pulling her own hair, beating on herself and just completely berzerk. Her psychologist told me to bearhug her at these times but I've tried that before and it absolutely makes it worse because she feels attacked. So I put her in her room (which she hates because she hates to be alone) and she proceeded to destroy her things and pound wildly at the windows (which I feared would break and harm her more). I feel so helpless to help her when she is in these episodes and they happen anywhere from once a week to once a month. Last night she wanted to swim and I couldn't be out there to supervise and she completely lost it, screaming and throwing herself down where she scraped her leg and bruised her cheek. She was so upset she didn't even realize she was hurt! And somtimes she may overreact to the simplest bug bite but she's bleeding from her leg and bruised on her cheek and dosn't even feel it?
When she calms down and I try to talk to her she states she doesn't know why and gets a blank look as if she doesn't remember the intensity of what happened. I fear, if left uncontrolled, these episodes will ruin her quality of life. She is already constantly in the principal's office at a private school that will not understand her nuances. I am having her repeat Kinder next year to allow her some more social development eventhough she will be quite bored academically because she is already doing some complex math and reading and has always been quite good at difficult puzzles. However, due to her developmental delays, her handwriting is quite bad and she complains that her hand "hurts" when she writes. Her OT tries to help with pencil grips but she continues to resist handwriting.
With what they describe as developmental coordination disorder I would expect extreme lack of coordination but on the contrary, my DD is quite gifted at certain physical activites. While she tires extremely quickly from any physical exertion I often find her at the top of the patio columns (10 feet!) when she has bare handed and bare footed climbed the pole like a monkey. She can throw a basketball into a hoop flawlessly, and her problem is that she is a "perfectionist" oftentimes becoming so frustrated and intensely brokenhearten when she cannot perform something to the quality she wishes.
I waited 9 months for an appointment with the supposed best developmental Pedi in our town. She says no Asperger's, no Autism, just a long list of other disorders that don't exactly explain the total picture. I've succombed to medicating her with antidepressants for her often debilitating anxiety. It has helped somewhat. Now they want to talk about further medication to subdue her which I just cannot agree to. The ADHD meds were a complete disaster. It helped her focus while she was on the meds but "coming down" from them made her much worse than ever before.
With My DD's anxiety, I've become her "security blanket". She leans on me to help her and be her protector. I am just worried that as she becomes older and as her episodes become more violent I won't be able to help her. Any ideas on how to deal with a child going through the "caged animal" feeling as you put it? Do I try to learn the signs of frustration and try to intervene before it blows up? And sometimes she goes from laughing one second to screaming fit the next: LITERALLY. I try to teach her coping mechanisms such as breathing but she says when she gets "that feeling" she can't calm down.
I've requested that they use extreme scheduling next year at school and that she be told and shown with pictures when possible what will happen next. Her episodes seem to be triggered by something happening that she can't control and that she didn't expect. Well, in this life those things happen almost constantly. How do I shield her from that? And how do I discern between what is a tantrum of "not getting her way" and what is sensory based or out of her control? Or should I accept that learning to act appropriately with an SPD child is not possible and is just asking her to fit the "mold"?
Sorry, I am asking impossible questions questions here. I TRULY appreciate the responses received from everyone on this thread. Any feedback is always welcome! Sorry for the long post!
:goodvibes

Thanks!

[mechurchlady]

Recently mom pushed me so hard emotionally that I was close to cutting. However instead of cutting I put ketchup on the wall. A stroke for every mean word, everything mom was venting and spewing at me was on that wall. I was desperate and could not control mom until I controlled myself.

It takes time to be self aware of problems and then come up with solutions. My solution did no damage to the house or myself but once long ago threatening to cut or scraping my arms was my way of saying STOP.

Your daughter is lashing out because of internal confilct and problems. It is going to take reduction of stress and finding out what is bothering her. She clearly is lashing out as a way of saying STOP I CANNOT TAKE THIS ANY MORE, MAKE IT GO AWAY, STOP IT.

yOU ARE NOT A BAD PARENT AND SHE IS NOT A BAD KID. She just is overwhelmed easily and is coping as best as she can. Punishing her is not good either until she is self aware. Try swaddling her in blankets. Hold her and rock her. Know her limits and do not let her go beyond thsoe until she can learn slef awareness. She is under a lot of stress but you do not see that because you are not like her.

You are a great mother becuse you love your child and are online researching and looking for help for that child.

hug
Laurie:hug::hug::hug::hug::surfweb::thumbsup2

[GraceLuvsWDW]

Oh, Laurie, your post sent me to tears. My Goodness I wish that I could help you or that someone could be there for you in your times of need. :hug:

I fear that I am so confused as a parent that my constant indecisiveness just adds to my DD's problems. And I feel that is what you are expressing in your post.

It is so hard to be a parent and stand firm in your beliefs and strong in your convictions and advocate for a child! I'm surrounded by those that "know best" and tell me conflicting things of how to handle these situations! My motherly intuition has always told me to give my DD the extra support she needs when these episodes occur and yet I am faced with my own parents/friends and the rest of the NT society that say don't give her the reinforcement when she is being "bad". I am told to discipline her when her behavior is out of bounds so as to teach her to stop acting that way. But what you describe in your post and what I have sensed as a parent is that she is out of control, unable to verbalize that feeling and lashing out.

Perhaps a NT kid can be taught, through Time Out and discipline to modify their behavior, but the NV child doesn't have the neurological abilities to adapt and learn from normal disciplinary techniches. I so suffer with my empathy over my DD's turmoil. Does my empathic pain encourage her to tantrum? Why would she need me to react to her pain? How can I stop the tantrum without empathizing with her and/or disciplining her? And how do I give her the comfort she needs from me without encouraging further meltdowns?

This is the dichotomy of being a parent to a NV child. You want to save your child from distress, you sense that they are unable to act approprately or learn to respond appropriately to what they percieve as dangerous stimuli. Their brains interpret that which we all filter out as meaningless into a fight or flight response. But the NT world is based on training people to act approprately in society. Those that aren't "trainable" become cast outs, shut ins, not so-called productive members of society as we know it.

All my DD's drs say one thing: it is my goal to make her adapt to society. But these startling and honest reflections from you adults who have lived with this have a much more intimate knowledge of what is needed. I think I will try your approach and try to intercede before tantrums occur even if that means adjusting my life and sacrificing what I need in the short term. The swaddling and rocking is a great suggestion, my DD, eventhough she is almost 6 still asks me to rock her often. To others this is "babying" her but perhaps it is organizing and soothing to her mind and I need to learn not to judge my interactions with my DD according to the NT world's perception.

Thank you, Thank you, Thank you!
Big hugs to you Laurie! While you are not making the $50000 a year in the productive job as you mentioned in your PP, you are an asset to this world and I hope you can have some peace and comfort and not judge yourself based on society's false benchmarks. When we are all gone from here, it is not our jobs or money or any of that that will have had any meaning at all.

[bookwormde]

GraceLuvsWDW

Once you understand who and what you are it its really not that big of a deal as long as you keep you sense of humor, and the NT world is very humorous when look at from “outside”

Since you ask I will offer my perspective on why you are not having success, It is not my intent to be critical but to offer a perspective and alternatives so please take it in that light.

I know from your perspective it looked like an intentional violent attack and had the practical effect of that but I am quite sure that that was not her intent. The yet undiscovered basis on which she based her actions is usually far from our first thoughts, and your reaction was while not unexpected, unfortunately as you discovered not “productive”.

Here is what I have found works, although I “screw it up” on a daily basis and your situation is somewhat different the principals are the same. Let go of all of what society (including well meaning but ignorant friends and family) say, your child is different an always will be. That is not a bad thing and actually can be quite wonderful but it is still “different”. The standard rule/punishment system simply does not work in most cases, and is often severely damaging. Our children need principals and skills and education. The actions you described are likely manifestations of he not “understanding” the world and just trying to do the best she can. Why she did it may be frustration and not having any other skill yet to express it or it may be a model of something she saw in a cartoon or any of 100 other reasons, but while it is nice to “know why” it is much more important to take these events and use them as the excellent teaching opportunities that they are. How to do that, first is letting go of the societal parental expectation that I referenced above (a lot easier said than done). This means not getting upset (and not just faking not being upset) since as soon as this happens since you are your daughter whole world (yes this is very obvious as is how much she loves you from the pictures) her world becomes very unsafe and her self worth is diminished to the point where it would be easier just “not to exist”, thus the melt down and associated behaviors. I know that it is not this simple but here is the ideal of what would happen. After the child was hit, the child would show that by crying or other non-aggressive means that it hurt her. You do not need to give any admonitions just make sure that she is aware of this. She may start to melt down once when realizes the impact and it is appropriate to let her know that the child is not seriously injured but that hitting the child did hurt her. This is going to likely take some time to sink in and for her to calm down after she processes the facts. Only after she completely calm down is it time to do a “social autopsy”. It has to be done in a non-accusatory way or she will likely just shut down. Start well before the incident and slowly work though it. Ask her what when thought the reaction of the child would be? Have some skills ready when you discover the true “why” of the situation. It always amazes me how far off my initials “guesses” are. Of course this is in an ideal world where the other parent and child understand the situation and are supportive and you can “let go” and “keep your cool”.

One thing to remember is that if you need to hug to keep her safe that it is something that you practice during non meltdown times and that as much as possible be calm and supportive of her needs.

Oh and she does not need to repeat kinder she just needs a teacher and staff that understand and support her needs, the fact that they think keeping her back will help her “social development” is a big red flag that they do not really have a clue.

As for the developmental ped who said it is not autism genetic related, video tape your child during a few meltdown and the Ped will realize just how incompetent he/she was. I am willing to bet that he/she did not have an autism group do a full set of evaluations.

She will learn the world from you, Her anxiety will go down when she knows that you (and hopefully the school) “understand her” and know how to meet her needs instead of using NT methods. It is actually quite amazing how quickly this happens when the environment changes.

Wow I hope that did not come of as being judgmental, it was not intended that way, but it is one of the hard lessons that parents of children with autism spectrum genetic have to “come to” if their children are going to thrive.

bookwormde

[mechurchlady]

GraceLuvsWDW do not pity me as what I wrote is part of being a neurovariant with a neurovariant mother. You think it is hard having a child then try having an 82 year old mother who is hypersensitive.

I want no pity but want parents to understand how the neurovariant thinks. I told the story about the ketchup to show how when under duress I went into a darkness but was saved by rewiring my brain to reckognizing that I was in the darkness. It takes rewiring, self awareness, and training to keep from doing bad things.

Your daughter is not a bad child. The best expert I know is bookworm. Spanking a child for hitting or biting does not work on a neurovariant if the child was roleplaying as a cartoon character they saw, was trying to say STOP and let me off this mad world, or was reacting to too much stress or stimulation.

I have taken on being the mother to my mother. She is classic super hypersensitivity. It has taken 3 years of work with her to make any progress with her. She has to have things done NOW even if I am in the bathroom, very sick, making dinner, writing a letter online, or playing a game. Everything must stop for that very very important thing. She screams my name over and over but never waits even 30 seconds for me to respond and cannot hear me, lol. Those time call for my "boom boom game" in which I clap my hands 10 times to remind myself that I am not to be running at her whims and to force myself to delay my response. She has gotten better on this issue from the little game. She shuts down and will not eat if stressed out so I have to be very careful to word things so she understand and explain things. The DVD is not broken, I have to put in the other disc.

It is very hard at times to live with a neurovariant. It hurts me to see mom curled up in a ball like a kid about to be hit. It scares me when she quits eating. It frustrates me when she cannot grasp that I cannot be there in 5 seconds for her needs. It wears me out to walk on tiptoe and minding everything I do and say around her and making her world perfect.
The bottom line is that despite all that I LOVE HER VERY MUCH.

I want no pity and my life is bad at times but there are others far worse than me who do not have online friends like I have here to cheer me up and teach me things. I share so that others can learn but normally keep those things secret. I would never tell the waiter or even my doctor those things. They are a part of me I rarely share so that people can understand.

Big hugs
Laurie:hug: :hug::surfweb::hug:

[GraceLuvsWDW]

bookwormde, thanks for your suggestions. I do not feel judged by the suggestions, I just often feel confused by all the differing techniques and suggestions.

I just came back from a session with my DD and the child psych. I explained to him the episodes and how I feel she is out of control and responding differently to my disciplinary techniques than would a NT. He stated that it does not matter WHY she acts the way she does, that the only thing to consider is to teach her to act appropriately. So, his suggestion is to give her a choice whenever her behavior is undesirable. So she was whining and upset while I was talking to him. He instructed me to say "You can continue to whine and we will play a game in 10 minutes or you can stop whining and we will play the game in 2 minutes when we are done talking". She, of course, continued to whine and escalate and stated she didn't understand what I was saying. So, I told her, "OK, you have chosen not to stop whining and you will have to wait 10 minutes to play the game". She continued to escalate and for 10 minutes I was to ignore her pleading (which was very difficult for me). After the 10 minutes were up I said ok (without any judgment or reinforcing) we can play the game now. He said that if I continue to give choices and continue to appropriately enforce the outcome of those choices, my DD will eventually learn the right behaviors as a choice.

While I understand where he is coming from and hope that it would work I tried to explain to him the severity of her episodes. He says, doen't matter. Your goal should always be the same-to remain calm and enforce the consequences of her choices. He also told me that when she pounds on the windows or tries to hurt herself to hold her in the bearhug and say when you're ready to do your time out and not hurt yourself or anything I'll let you go. How do you guys feel about this? How do you feel about his statement of WHY she acts the way she does doesn't matter? He says I must teach her that the world has consequences and not to look at discipline as "bad" but constructive. I told him I fear she is out of control and he said "You're analyzing her feelings and thoughts too much". He said by my giving her disorder creedence to act out of bounds it does her no good in the long run.

Also, bookwormde, I have tried many, many times to do the "social autopsy" after an especially difficult episode. Usually that night when she has her bath or before bed before "book time" I'll try to replay the event in a sort of social story fashion. Always it is the same, she seems or acts as if she doesn't remember and gets very agitated and doesn't want me to discuss it at all. Sometimes I have limited success when I tell the story in a sort of "play school" fashio where she is the student and I tell the story and she gets to raise her hand with any questions or comments. I know it sounds strange but that gives her the structure she needs to talk about it in a disconnected way. But what you said did strike a chord with me-what you say about me not "losing it". You are right, she is very sensitive to my state of mind and that might be a lot of her regression. I am going to try to "let it go" more and not get so frustrated with her behaviors.

The reason they want her to repeat Kinder is due to first grade being mostly "desk time". Very little hands on learning and they don't think she is ready to be still all day. It is interesting that you do not advocate that, I've always gone along with the idea that she is developmentally (socially, neurologically and otherwise) delayed and that the extra time would be an asset for her in the long run. She is just turning 6 next month, so she wouldn't necessarily be the youngest Kindergartener but she does have many of the Kinder skills mastered already. I was hoping they would work on her lacking skills while also fostering and reinforcing her academic skills. I live in a small town and when I enrolled her and asked for IEP or a 504 they stated they just don't do that until they "see her in action in the classrrom". I know that is a whole other "hot topic" on these boards which we don't need to rehash here but I do need to work within the unfortunate confines of my limited academic resources here.

Thanks so much for your feedback, I truly appreciate your viewpoint!!

:goodvibes

[Forevryoung]

GracelovesWDW,
Your daughter sounds a LOT like me- I was that very similar "lashing out" 6 year old... and while I still get into that "mode", the frequency has decreased as my coping has increased.

My mom was/is amazing. She held me, rocked me, and understood that it was "out of my control" (to the proper extent). She no longer feels the same way now that I am an adult but that is a different story. She did what she could to teach me to cope- to alter my world when I couldn't handle things and to push me when I could be pushed. She was my rock for a very long time, and when I got old enough to push myself, I knew I could always run back into her arms.

Start by conforming to her world, get her anxiety manageable, and then push slowly on the things that are most important. The things that she wants to be able to change/do or the things that she will have the most success with. Take baby steps forward. I've learned that a small bit of anxiety is ok and I know what my "breaking point" is. She will learn the same with help and support. I'm no longer the 8, 10, 16 year-old me in full tantrum wanting to die because I couldn't deal anymore (yes, at 8... I wish help had been gotten then and not at 16!)

You are far from a bad parent- the bad parent would blame the child, punish the child, force the child... and wonder why everyone was even more miserable.

I don't expect the world to conform to me simply because I've never wanted it to- I wanted to "fit in" and yes, I have found my place in the world. I decided many years ago that my life would be boring if I wasn't "me" with all my quirks. And I'm honestly happy (with help from an antidepressant).

A favorite saying, "normal only exists as a setting on your washing machine" :hug:

[mechurchlady]

Yes, the bear hugs and swaddling often helps. Swaddling is wrapping in a blanket tightly and works for me, lol. When I am in a funk I just lay down and wrap up in one of my softer light blanket then toss the heavier one on top and have all lights off except the computer monitor.

Did she understand what you meant about her choices about whining? If she did not understand then the punishment was bad. What is whining? should have been addressed to her then that she has an choice. If something works then use it like your classroom method. Having a neurovariant in your family means a lot of guesswork, sleuthing and doing what ever it takes to make it work.

as for "whining" there was a Reader's Digest article where the army dude told his Asian driver to go back to the base. They proceeded toward the base in reverse gear. For a NV the no kicking rule means no kicking but hitting and biting are allowed as those are different things. NTs would immediately get the idea that no kicking means no contact but the NV sees things differently.

Big hugs and you are a swell mom
Laurie :hug:

[bookwormde]

The social autopsy thing takes a while to get them in the “hang” of and they have to trust that they will not be “punished” for what they say. They often do not recall many of the details, particularly if they immediately become anxious since that tend to be a “block” for out children. IT took me quite a while to become a good detective without raising anxiety.

Your Psych is using a behavior model for what he is telling you. It is becoming quite old school since with our children is has shown to be quite limited (literally you have to teach or modify each behavior for each situation one at a time since the social skills which NT children use to generalize these behavior to other circumstances are not available to our children. Quite clearly the Psych is not well versed in the state of the art for children on the spectrum, but I guess that goes without saying since he has not recognized that in your daughter.

Only you can judge if your child will benefit form staying back but unless there is an intensive social skill program for her, thinking that she will magically be ready in a year is typically unrealistic. As for sitting still she may need the “motion” so they should be able to adapt her first grade class to accommodate her. Since it sound like she is quite bright if she is going to stay in Kinder they need to be giving her 1st and second year materials in the areas that she excels otherwise she will likely become very frustrated.

I know you do not want to hear this again, but if this is a public funded school they are breaking the law, by not doing an education evaluation and most likely an IEP. There is a reason why the law is written this way and what the school in not doing for your child is the reason. Call your state department of education and explain the situation, they will very quickly let you know that the district is not following the law and will likely be making some calls. The law and implementation requirements are no different in a small town. The state has final responsibility to see that your child gets an appropriate education and have funding and technical resources to help the local school, but if they do not know there is an issue they cannot help. Fighting for your daughter rights is just part of being a parent whether it is getting a proper clinical evaluation or making sure IDEA is followed.

I know it is a lot to “handle” and there is a big learning curve, trust your instincts. You are a great parent, but unfortunately there is nothing easy about dealing with the situation when you do not have good outside support.

bookwormde

[GraceLuvsWDW]

Laurie, I did not mean to offend you or be piteous toward you, I just have great empathy toward others who endure these struggles. My grandmother had Alzheimer's and I cared for her, and while it is not the same it is so depressing to have those you care for so seemingly unappreciative of your efforts. It is a great thing that you care for your mother and I say that with no pity or patronizing at all.

I am still confused and reeling from all of the constant bombardment of "what to do". Everyone seems to say just do that, heck even my very best friend told me "give me a week with her." This is so depressing that even those supposedly closest to me do not realize the extent of her issues and more often than not people choose to absolutely deny the existance of any neurological variancies in the very young unless they are clearly glazed over and unresponsive.

I've been using the "choices" method all evening. As with all disciplinary methods it has been working somewhat well tonight. She is usually fidgety, restless and unwilling to go to sleep and I told her "stop fidgeting and I will read you books or continue to fidget and we will lay here in darkness". Of course, she must have the reading to fall asleep so she chose to stop fidgeting and very soon she was fast asleep. I hate to defeat myself before even giving it a chance and of course all psychologists will say she senses my hesitancy but most novelties work for a few days and then she catches on and the behaviors return. However, I will keep my doubts to myself and give myself 100% to this technique as with all the others. I have countless reward charts, goodie rewards, etc, etc that have fallen by the wayside. Everyone just says stick to one and it will work but with my DD's clever NV mind, she soon finds a way around the techniques.

What is it about my mind that feels if I just love her and give her the comfort she needs she'll be fine? All the rest of the world says she is a manipulative animal out to get the wool over my eyes. What is it about me that won't believe that? And is it that belief that fosters her negative behaviors?

Oh, the night is long and tomorrow begins another day of struggles between my conscious mind and my motherly, intuitive love. I thank you all for your feedback. Every single word on this thread means the world to me.


:goodvibes

[mechurchlady]

What is it about my mind that feels if I just love her and give her the comfort she needs she'll be fine? All the rest of the world says she is a manipulative animal out to get the wool over my eyes. What is it about me that won't believe that? And is it that belief that fosters her negative behaviors?

Oh, the night is long and tomorrow begins another day of struggles between my conscious mind and my motherly, intuitive love. I thank you all for your feedback. Every single word on this thread means the world to me.
:goodvibes
It is something inside of people that gives them hope. When you are with someone you learn to read them and learn to love them no matter what. She is a lost little child in a big world and is coping as best she can. If she does not understand then explain. As you see she can make choices. There is the uncontrollable rage or whatever then there is the bad habits like fidgeting that can be controlled if there is a reward or punishment is great enough. She needs to have repeated over and over and over and over skills that normal kids just pick up.

You are a mother but most important is that you are a good person who has hope in the child as do I and most of the people on the board. Keep a diary and chart anything that may be a sign of improvement, pitfalls, stumbling blocks and successes.

You gave her a choice and she chose the reading and bed time.
HAPPY DANCE TIME
That is a small miniscule step forward. Not a big one but she did something good. :thumbsup2 :hug: :dance3: :cheer2: :grouphug: :thumbsup2 :cheer2:

If she is good for a while then say "You been so good this week we are going to go out for ice cream" nothing big and it could be something simple like new doll clothes, a new pair of socks she likes, or something yummy to eat.

Mom has been very good so when I came back from the restauarant last night I got a scoop of ice cream and shared with mom She gets her much loved DVD time when she is good at night.

It hurt me the night she was very nasty mouthed and saying stuff I do not allow in my house. She threatened to call the cops, 911, and go to a nursing home or a hospital. I was in my office and finally mom was like a little girl. I do not recall her sounding that pitiful like a child left outside the house and unable to get in as darkness comes and she is all alone. Those sounds tore at me as I had to punish her and take away what she loved most which used to be watching telelvision at midnight with her. IT HURT ME BIG TIME but you have to do what you have to do. I went back in with in minutes becuase she was so traumatized by me leaving her alone that night. She never realized that she was a nasty person or that her words her me dearly.

O need a break and have to get monthly meat and depends and take that bleeping television back.

Chin up and know that we all are here and listen to the moms here and bookworm as he is very smart about such matters. if you are troubled come to the behavior thread and chat as we will try to help you work things out.

big hgus and chcolates
Laurie:hug::thumbsup2:cheer2::grouphug:

[saveaquarter]

I have a question for your DH, does he find pronouns (or missing but assumed ones) to be an inaccurate way to communicate and require additional effort to place them in the proper (socially based) context, and for us then subject to misassumptions, which can lead to “awkward” moments. Working with DS has made me realize how often I can not make this distinction with certainty and how in many situations I avoid “joining in” since a misinterpretation can be quite “socially awkward”. I think I drive my mostly NT DS crazy with this since if he asks me “can you put my shoes on” I have to of course give him the aspire answer of “I do not think they will fit me” (with a smile). He does not think it is funny.


I had J read this and he just said, "Well, I have trouble with names. I just give people descriptive names because I forget their actual names. I'm not sure about pronouns. I don't know. I bet you know. You answer for me."

I have a hard time identifying any "problems" he may have because I'm so used to talking to him nothing stands out to me. I do have one story though. I asked him to pick up 4 pounds of pork tenderloin at the supermarket the other day. I got a phone call while he was there, in a panic, because he couldnt find any 4 pound loins. But. He went through what they had and found a 1.87 pound loin, and a 2.13 pound loin. Exactly four pounds. And would that be okay?


With regards to your suggestion about going to a calm place to quietly probe for what may be the true problem, I guess this is where our problem lies. Perhaps my DD is too young to appropriately express what the true problem is and perhaps I, as her mother, am not intuitive enough to figure it out. Last week she had a major episode when her friend, who was over visiting needed to leave. She ran upon him with his back turned and out of nowhere hit him as hard as she could on his back. It really hurt him, his mother was there, and of course I was appalled as such a violent attack. I sat her down in a chair and told her not to move while I sent the child and mother home. As she sat there, she escalated further and further into incoherancy until she was screaming that she wished everyone were dead. This was very frightening to me! She was hurting herself, pulling her own hair, beating on herself and just completely berzerk. Her psychologist told me to bearhug her at these times but I've tried that before and it absolutely makes it worse because she feels attacked. So I put her in her room (which she hates because she hates to be alone) and she proceeded to destroy her things and pound wildly at the windows (which I feared would break and harm her more).

I read that to J, and he said your daughter likely felt unfairly punished by her friend leaving, and then abandoned by being left alone in her room. He suggested finding her something safe to take out her aggressions on, like a punching bag. He punches pillows, on the rare occassion he feels the need to get out frustration in that way, because I don't let him put holes in the walls now that I live here ;)

Also, I think it would be tremendously helpful to work on establishing a safe space with her while she's calm. That's something I've worked on very carefully with J. It's not just for when he's on the verge of a meltdown, it's for any time he needs to unwind or relax. J recommends something soft. He has the softest blanket on earth, it's wonderful.


I just came back from a session with my DD and the child psych. I explained to him the episodes and how I feel she is out of control and responding differently to my disciplinary techniques than would a NT. He stated that it does not matter WHY she acts the way she does, that the only thing to consider is to teach her to act appropriately. So, his suggestion is to give her a choice whenever her behavior is undesirable. So she was whining and upset while I was talking to him. He instructed me to say "You can continue to whine and we will play a game in 10 minutes or you can stop whining and we will play the game in 2 minutes when we are done talking". She, of course, continued to whine and escalate and stated she didn't understand what I was saying. So, I told her, "OK, you have chosen not to stop whining and you will have to wait 10 minutes to play the game". She continued to escalate and for 10 minutes I was to ignore her pleading (which was very difficult for me). After the 10 minutes were up I said ok (without any judgment or reinforcing) we can play the game now. He said that if I continue to give choices and continue to appropriately enforce the outcome of those choices, my DD will eventually learn the right behaviors as a choice.

While I understand where he is coming from and hope that it would work I tried to explain to him the severity of her episodes. He says, doen't matter. Your goal should always be the same-to remain calm and enforce the consequences of her choices. He also told me that when she pounds on the windows or tries to hurt herself to hold her in the bearhug and say when you're ready to do your time out and not hurt yourself or anything I'll let you go. How do you guys feel about this? How do you feel about his statement of WHY she acts the way she does doesn't matter? He says I must teach her that the world has consequences and not to look at discipline as "bad" but constructive. I told him I fear she is out of control and he said "You're analyzing her feelings and thoughts too much". He said by my giving her disorder creedence to act out of bounds it does her no good in the long run.


While both Jake and I think the choices method could work very well, be sure you never bring punishments into it. And don't punish her for expressing herself. That seems counterintuitive when she is acting out and hurting those around her, but you may discourage her from expressing herself completely.

Also, honestly, I think you need to find a new doctor. The things he's sayin are too close to what some of the quacks J has seen have told him. Those people, in his own words, wanted him "tortured". While I think a therapist will benefit your daughter very much, you need to find one who will suit her specific needs. And she does have very specific needs. This therapist wants to change her completely, and while the world will never change to suit her, unfortunately, it doesn't have to be solely about her giving and changing. It and be a give and take, and at home, among people who love her and know her and care, it should be.

The most important thing is, you know she needs help and you want to do your best to help her. You're a good mom :)

[bookwormde]

Saveaquarter,

Thanks for checking with DH, I completely get the difference between 4 pounds of (a) tenderloin and 4 pounds of tenderloin(s).

GraceLuvsWDW,

The choices procedure can be a very useful “tool” and can promote flexible thinking. I use it with DS all the time and often expand it to more than 2. The thing to remember is that it is not for “critical” situations, but instead is for area where there is already competency (comfort) and limited anxiety. It is important that both choices clearly be understandable and viable options for your daughter. Using this as a general method or in a punishment structure in an attempt to limit options is not good and just generates anxiety, as the child feels “trapped”. I also add an effective adjunct that if DH does not understand or find my “options” workable that he is free to create his own as long as it meets up with the same “principle” basis. Of course you have to already have made the transition for rules based discipline to principle-based discipline.

This is a long learning process (I learn new things every day) so while it is frustrating, you efforts will create massive benefits for your daughter, so hang in there.

bookwormde

[mechurchlady]

Two men and they are both Aspies but different responses to a pair of questions.

Can you put my shoes on?
Can you get me 4 pounds of pork tenderloin?

One man says the shoes are not his size and then goes and brings back 3 packages of pork tenderloin totaling 4 pounds.

One man immediately helps the person put the shoes on, goes to the store then calls the wife because he cannot get a "4 pound package" of pork tenderloin. The wife has to explain that any number of packages totaling 4 pounds is fine.

As you see the neurovariant mind does not have typical patterns where everyone fits.

Hmmm, I been thinking and maybe both men are not having Aspie moments but just are having typical male moments. :lmao: :rolleyes1

[pudge the fish]

ok my totally typical NT hubby would have said But your shoes won't fit me to DD- I think thats a guy thing trying to be funny....
AND
he would have called if I said a 4 pound roast and all they had were under or Over in pounds. for some reason guys think it has to be EXACTLY what we say- and he has called when I have sent him out to get an item and they don't have EXACTLY what I put on the list.

they aren't so different after all:)

and :hug: to graceluvswdw

[saveaquarter]

lol yes, it may have simple been a Man Moment, but next time I'm going to specify any combination that totals close to four pounds is just fine. How on earth he found two that equalled exactly four is beyond me, anyway :rotfl:

[GraceLuvsWDW]

GraceLuvsWDW,

The choices procedure can be a very useful “tool” and can promote flexible thinking. I use it with DS all the time and often expand it to more than 2. The thing to remember is that it is not for “critical” situations, but instead is for area where there is already competency (comfort) and limited anxiety. It is important that both choices clearly be understandable and viable options for your daughter. Using this as a general method or in a punishment structure in an attempt to limit options is not good and just generates anxiety, as the child feels “trapped”. I also add an effective adjunct that if DH does not understand or find my “options” workable that he is free to create his own as long as it meets up with the same “principle” basis. Of course you have to already have made the transition for rules based discipline to principle-based discipline.

This is a long learning process (I learn new things every day) so while it is frustrating, you efforts will create massive benefits for your daughter, so hang in there.

bookwormde

I have been using the "choices" method and it has been working, but I have also been very careful to monitor her anxirty level and intercede when it starts to escalate. So I've been having success using both of the techniques.

You hit on the crux of the major problem I am having: What to do when a MAJOR meltdown is occurring. I can't always head them off at the pass as some stimuli seems to be out of my control. There are days when she just seems "off" all day and generally acts as if her skin is crawling (that's the only way I know how to describe her general state of being). These times can last anywhere from a day to several days in duration and I am only human and become frustrated when there seems to be no way to comfort her. In prior times, I would call her Dr, tell them what was up and they would try to adjust her Paxil, saying she was getting "used" to her dosage. But the adjustment of the meds wreaked total chaos and only furthered the problems. What do I do at these times? You people who know what she's going through, what would help? You can't occassionally drop out of society but you cannot walk around falling to pieces every second either. At these times she becomes hyper emotional, crying at the drop of a hat and very, very angry. As I said, I am only human and these periods become very, very dark days for me too. :sad1:

I've been contemplating this all very carefully for the past 2 days. I am a very analytical person. I find myself between two worlds-you guys who understand the SPD and anxiety that it creates-and the rest of the unbelieving NT world. Why is it that these 2 worlds can't match up? They are 2 very different methodologies.

Thanks for all your help. :goodvibes

[mechurchlady]

Holding a child tight in a bear hug really helps as does swaddling smaller children.

It is hard to live in an NV world wherre the NT rule everything and have no toleance for folks who are different. I was watching Superstar last night and seeing how she was an outsider. I want to be part of the NT world but often forget and should stay here in my NV world.

I send you big hugs and calming chocolates:hug::hug:
LAurie

Psst you are a great mom and doing a great job.:thumbsup2

[bookwormde]

It is a shame that so little of the standard society understand and supports our children. One thing that I try to remember is that most people never consider that there is another way to “be” and that much of what is considered standard and acceptable (normal) if subjected to clear analytical review would not be all that “acceptable” on an intellectual basis, but since it is derived from innate wiring goes by “without a thought”.

Changing society is a multigenerational process, and for now all we can do is to surround our children with those who are willing to “consider” their special needs. This does often bring about a major change in the families “circle of friends” including reducing contract with some parts of the family. This is not easy and there is a grieving process that goes along with it, but to provide a “safe” environment for our children is unfortunately necessary with the current state of our society.

While using anti- anxiety medications is sometimes necessary during an acute and potentially damaging clinical events, it does add a whole level of complexity to trying to help our children, and can, depending on the side effects and tolerance create the exact anxiety that it is supposed to be reducing. Most progressive clinicians will, once other supports are in place and working “effectively” try to minimize the use of medication just for this reason.

Since you do not have a “competent” clinical team at this point you are in a very difficult position of having to manage much of the situation “own your own”

bookwormde

[mechurchlady]

bookworm you are a dreamer. Ther is no way that society will accept us who are different and they will seek us out and destroy us. Prejudice is still out there and there are people who abhor people who are of another religion, language group, looks, ethnicity, or sexual orientation.

Each time I go to any site but my dear friend's fairy site there is that fear that the emails are about me being in trouble or that I will be banned again from another site. I live with that fear because it has happened to many times. I have been the outsider all my life. Not pure enough to be White or Mexican, not skinny enough for sports and cheerleading, no talent, and ugly as all get out. I want no pity. I just want people like Sue and Natalie and a few others to love me or like me and work around my NV problems and helping me to fit in.

My favorite spot is Fay and there are two lovely women who scold me when I am bad, remove bad posts, and encourage me when life stinks. Cava got me to change my diet. Brentsmom and Cava both care about me and help me to grow. I wish there were more people out there like them. It is the only site that I have no fears at all of being banned or in trouble well usually no fears of trouble. It is the only place on the internet that I am safe.

This site is safe but the fear is there. Bookworm there will never ever be tolerance let alone acceptance of neurovariants in society as we know it.

[GraceLuvsWDW]

It is a shame that so little of the standard society understand and supports our children. One thing that I try to remember is that most people never consider that there is another way to “be” and that much of what is considered standard and acceptable (normal) if subjected to clear analytical review would not be all that “acceptable” on an intellectual basis, but since it is derived from innate wiring goes by “without a thought”.

Changing society is a multigenerational process, and for now all we can do is to surround our children with those who are willing to “consider” their special needs. This does often bring about a major change in the families “circle of friends” including reducing contract with some parts of the family. This is not easy and there is a grieving process that goes along with it, but to provide a “safe” environment for our children is unfortunately necessary with the current state of our society.

While using anti- anxiety medications is sometimes necessary during an acute and potentially damaging clinical events, it does add a whole level of complexity to trying to help our children, and can, depending on the side effects and tolerance create the exact anxiety that it is supposed to be reducing. Most progressive clinicians will, once other supports are in place and working “effectively” try to minimize the use of medication just for this reason.

Since you do not have a “competent” clinical team at this point you are in a very difficult position of having to manage much of the situation “own your own”

bookwormde

Yes, you are right. Any suggestions on how to find a competent team in a small town? And changing the mindsets of my family and friends is a daunting task, at best. All of this adds to almost insurmountable helplessness on my part. I do my best to read up and seek out those that might understand but am knocked down a few rungs with the ongoing judgment by those around me. I used to be such a dynamic, capable person. All of this should be innate to me and yet I've never been so weak and indecisive in my life. I greatly admire and am envious of those who know what their goals are, keep their eye on the goal and never falter. So much of my strength and resolve is absent so I grasp whatever help I think I can find---even if that is sometimes incompetent therapists, know it all Drs, or even judgmental friends and family.

But I am doing better today, the pain of the episodes from last week is fading and I'm reading more of the books that explain and legitimize that which everyone else wants to discount. That which some of you know all too well. I want to be at a place where we've learned to take the idiosyncracies in stride, where we learn to curb the onset of the anxiety and where we can look at all of this with humor, as you stated in your PP. I fear that if I alienate all my friends, family, therapists, and Dr's-where will I be? And yet, I need to set out on a quest to find better substitutes for these that I have now. They are just furthering my weakness.

Thanks for listening to me vent you guys!
:goodvibes

[jackskellingtonsgirl]

OP here. :)

DS saw the neuropsychologist on Monday. The tests lasted about 5 hours, but he did have a break for lunch, so I am guessing maybe 4.5 hours of actual testing.

The Dr. e-mailed that he has the results, but he will be out of town next week so we have not set a date for me to talk with him about his findings. Hopefully I can get an appointment on or around 5/26.

[bookwormde]

Jackskellingtonsgirl,

Glad you ware able to get an evaluation this quickly. Hopeful your neuropsych is one of the relatively rare “good ones”.

Did they do an auditory processing evaluation? For some reason Neuropsychologists tend to miss this one, where neurologists generally do them (and miss some others). If you feel comfortable it would be great to know if the neurospych still thinks it is just an EF delay or if it is a true genetic EF differential (being able to make this type of differentiation is often a good way to judge the competency of clinician).

Just remember that your child is the same wonderful individual after the results that he was before the results, you just have a lot better tools and information to assist him with his special needs.

In reviewing my posts I see that I did not offer my standard recommendation of reading Tony Attwood’s “The Complete Guide to Aspergers” C2007, it is probably available from your local library, if not it is available at Amazon for about $25. Even if it ends up the your child is just ADD the book provides valuable information and insight into this and if the issues are broader it will allow you to better understand what clinicians are telling you and will allow you to ask informed questions. Since you have some time until you meet for the evaluation review reading it now might be exceptionally helpful.

Again apologies for cluttering up your thread, I hope you found some of it informative.

GracelovesWDW,

Finding good clinicians comes in 2 levels.

For a good diagnostic center you will likely have to travel (possible even fly) to find a center, which is highly experienced and competent with genetic neurovariations such as EF differentials, innate social variations, sensory variations and so forth that are part of the Autism genetic set.

For ongoing support and therapies, you may not have any clinician in practical range who are adequately educated and experienced to meet your daughters needs, but often once you have a clinical diagnosis with compressive recommendations form a major medical center, some clinicians will “step up” and become educated, while they will not have the broad experience, often they are more committed since they had decided to become competent in this area so even though your child may be a “learning experience” and some “experimentation” may occur. Also do not discount your abilities, taking clinical seminars (again it may involve some travel) can be very helpful and will greatly improve your options, knowledge and therapies that you as the “parent therapist” can impart.

bookwormde

[jackskellingtonsgirl]

Bookwormde - I will see if I can find that book - thanks!
You know, I don't think anyone has done any auditory processing testing on DS. I will have to ponder that. I tend to think his auditory processing is fine IF he is paying attention when someone speaks to him. Once in awhile I will ask him "What did I say?" and he can tell me what I said and carry out the directives. Of course there is more to it than that. And as always, who knows how much of it is "normal" 13 year old stuff as opposed to any sort of brain function thing. :confused3

I am very eager to hear what the neuropsych has to say and what recommendations he makes based on his findings.