Sensory Processing - Diagnosis and school??

[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

 

[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!!

 

[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"

 

[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

 

[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.

 

[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.

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.

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

 

[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.

 

[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 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

 

[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.

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.

 

[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
LAurie

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

 

[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!

 

[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.

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