Possible Asperger's diagnosis for DS9- would love some input/ advice please

[Minnie M6]

I don't know where to start........... I have been reading about Asperger's and have been blown away by how accurately the symptoms/ behaviors (for lack of a better term) describe my 9 year old son. My Mom, who is a special Ed. teacher, mentioned to me that I may want to look into Asperger's in relation to DS, which is why I started researching it. She doesn't know much about it but thought he exhibited some of the characteristics. I always thought he was just "quirky" until recently, but I now feel that there may be more to it than that. He is highly intelligent but in such a literal way- very black and white. He had a homework assignment recently which required him to find alternate meanings for words, and we ended up arguing because he WOULD NOT believe me when I told him that the word icing can also mean frosting. We both ended up in tears (I know, I'm the adult, but he wears me down sometimes). He actually wrote the alternate definition on his paper but then wrote (not true) in parentheses. It hurt my feelings that he didn't believe me!

I always found it so strange that he didn't understand sarcasm, given how smart he is- and when I read about Asperger's it was such a feeling of relief and understanding. He is not trying to make me crazy- he really just doesn't get it! Although I think he has learned to "cope", in that he knows that if someone uses their voice in a certain way it may be sarcasm (he actually told me the other day that I wasn't using sarcasm because my voice sounded normal???). During our recent trip to WDW, he LOVED Space Mountain, but was scared to death on The Great Movie Ride- ducking when there were gunshots. He talked about it for days afterwards (I'm never going on that ride again) so I know he was truly frightened. I never know what to expect. Although I had a feeling that he would love pin trading, and he sure did! Every time he saw a CM he was breaking out his pins to trade. I was constantly turning around to find him in a conversation with a CM (not having bothered to tell me he was stopping). He loves to collect things and will talk your ear off, telling you everything you ever wanted to know about Pokemon or whatever his newest interest is.
I was literally crying while reading your stories about strange calls from school, because it is such a comfort to know that there is a reason for his behavior and that others are dealing with this diagnosis so well, and are able to laugh and find the joy in their children's different way of thinking.

My question is, do I need to have him evaluated and diagnosed? What is the treatment? He functions well at school.........he is in the gifted program and his grades have been good (although he is in a split class this year and is struggling with organization which is impacting his grades). He is not popular by any means, but does have 2-3 good friends who he socializes with occasionally. His teachers have referred to him as the rule police- it is very important to him that others follow the rules. Which is funny, because at home he is not so much a rule follower. But the structure at school is really good for him behavior wise. Truly, my main concern for him is the social aspect. He gets along with other kids but doesn't get invitations to many parties (like his 8 year old sister does) and I think some of the kids find him strange. He can't seem to read cues well so if he is annoying someone he doesn't really know it. It would break my heart to think he was being teased (I have seen it happen but not with the kids at his school). He only saw one friend over the Christmas break- she is his closest friend but they had an incident at her house in September and they don't see as much of each other any more. I thought that would devastate him but he seems okay. He likes to spend time alone, and would play video/ computer games all day if we would let him.

I apologize for the book- I could go on and on but I will stop for now. I hope that some of you will have some advice for me. Now that I suspect he may have Asperger's, should I talk to his pediatrician, or educate myself further first and then take him to a specialist?

[DisDreaminMom]

Hi! I'm the one who started the "Strangest Call from school" thread. Wow. You need a serious hug. If you lived anywhere near Lexington, KY, I'd say let's meet and have a cup of coffee or something. First, let me tell you that while I was reading your post, all I could think is, "This woman must be such a good mom to know her son so well". The next thing I thought was, "She's just like me, nobody told her directly- and she was smart enough to figure it out herself and caring enough to do something about it".

So, off to the library or bookstore with you and get Tony Attwood's book on Asperger's. There are lots of other books out there, but most are depressing or lump Aspergers in with (I know this might sound mean, but it's how I describe it so don't flame me) "head banging autism". So read this and you won't feel so bad anymore. Now, depending on where you live and how the school system handles things, you need to figure out if and how you should have him diagnosed. Most likely it would need to be a psych evaluation at a university hospital, as most normal doctors have no idea about this. It won't be cheap, but having your peace of mind might be worth it. Some people do not want the diagnosis on the child's record, particularly with a high achiever like your son. Your mother should have someone in mind that you could talk to (our school system has an actual Autism specialist).

It sounds to me like you may want a diagnosis if only to cover his a@# when he gets a little older. Can you imagine your son being accused of sexual harassment when he was just trying to talk to a girl and didn't realize he was in her "personal space"? Plus, the bullying gets worse. It makes me feel better to know that my son will have an extra set of eyes on him as he goes through school. If your son is anything like mine, the teachers just adore him. It's the kids that can't figure him out (and he them). My son could charm the pants off a snake, but only an adult one. The baby snakes would kill him!

I know the feeling of an argument that makes you just lose it. I didn't notice that when my son asks for his "things" (he likes girls dresses and globes and the Eiffel Tower) or makes his statements (he's currently going through a pink poodle-yep, got that right-pink poodle phase). I will say, "Toby, you are so strange". So yesterday, he looks at me out of the blue and says "We need to talk. You are really making me mad. You need to follow two rules- 1) Stop saying I'm strange. and 2) I'm not strange, I'm just me and you're making me feel bad."

Whoa. Called down by a six year old. I'm guessing that's why the kids don't like him too much. most of the time he's either like nails on a chalkboard for me or the cutest kid ever. And his older sister (8) gets invited out all the time and I feel awful that Toby does not.

There is no treatment- it's just how his brain is wired. I don't think Aspergers is a chemical thing or anything like that. I just think this personality type has been around throughout the history of man. The best you can do is support his interests and help him deal better with other people (just like any mom should do for their own kids, by the way). Anyway, it will all be fine. Your son will grow up and be highly successful and live a long happy life. (Mine might be living with me while doing this, but...)

And during our December trip, my DS rode Star Tours twice (begging for more but I was going to throw up) and cringed the entire time during the Great Movie Ride.

[mechurchlady]

You must get him properly diagnosed. It sounds like asperger's but there are so many brain quirks that I would not put a label on a kid. Also they need to help you and him find his weaknesses and strengths as well as any other disorders.

Soon Bookworm will be by and he has Asperger's and boy can he talk your ear off about asperger's. I trust him on the subject and love to hear him talk. He can better explain things than I can. Early intervention and therapy is available and with proper therapy and training kids often grow up to be like everyone else.

I can give you hugs and tell you that there is hope and your son will probably grow up to be just like other people except for a few quirks that he will adapt to and work around. Chin up and big hugs and snugs. :hug: :grouphug:

[Minnie M6]

DisDreaminMom,

Thanks so much for your reply and your kind words. Believe it or not, I went straight to the library and checked out a book by Tony Atwood after reading your post! (I am a good direction follower;) ) I had looked at the books at our library before but I was so excited to have a recommendation from someone who knows what they're talking about.

I really appreciate how you explained the reasons for getting a diagnosis. I feel like our school and teachers have been wonderful, and I'm not necessarily sure that we would need to get a diagnosis to have on his record, but your statement about protecting him in the event that anything happened got to me. If possible I would like to get the evaluation done outside of the school system- I don't think we need an IEP or anything.

Your son sounds like a sensitive and very smart boy. It's great that he can express himself and his feelings to you like that! I know what you mean though, about the extremes- Clay is either being lovely and sweet or very, very difficult- there is no in between.

My main concern is helping him with social situations. I am probably overly concerned with my kids' social lives because I think having friends is such an important part of growing up. We don't have kids on our street close enough that my kids can play with, so play dates and organized sports are their main outlets other than school. I am grateful that he has several friends who seem to "get" him and I need to stop worrying so much about it.

Thanks again!
Amy

[Minnie M6]

Mechurchlady,

Thank you, also, for your reply. I will look into getting him evaluated. I think Marshall University, which is about 45 minutes from us, has an autism center. That may be the best bet. I guess I need a referral from our pediatrician?

[bookwormde]

Sounds like your son is a pretty good “self adapter”. Make sure it is the up to date version, Tony Attwood’s “The Complete Guide to Aspergers" C2007 if not it is available from Amazon for about $25. He is the preeminent clinician in the field and “gets it” better than any other published clinician.

A formal evaluation is definitely appropriate with your description. He obviously has a large number of characteristics. It is unlikely that you will get a formal diagnosis since he is so well self adapted and is not be showing the maladaptive manifestation which are part of the DSM-iv criteria unless you have him evaluated by a clinician which has a large portion of their practice involving HFA and Aspergers individuals and stays current in the clinical literature.

The first thing to know is that this is a neurovariation, not a disease or other malady. While there are significant challenges in “syncing up” with neurotypical society the benefits of his “wiring” far outweigh them. Supporting his intellectual learning and application of social skills and Theory of mind is important (although it sounds like he has progressed well on his own). Once you become read on the subject you will understand the core differences in our Executive Function compared to the average population, especially important, is understanding how our visual/non discriminatory/non linear processing mind works (although this is just beginning to be understood and show up in the clinical literature) and what a great gift it is for inventiveness and creativity.

As to the situation with the English language, with 100,000+ exceptions and even more double meanings and TOM based interpretation it is completely illogical and inefficient. Once you accept that, you will be able to have a lot of fun with him leaning all the “silliness” that it involves. My DS9 had a great speech teacher who got him though most of the illogical constructs of speech ie sarcasm etc within about 18 months and he now thinks it is great fun. Do not try to convince him that illogical thing are correct, just let him know that this is the way neurotypicals communicate and that it is important to learn it and have fun with it as much as possible (with all the available phonic combinations why would someone assign multiple meaning to the same word?, just to make it confusing).

His issues with organization skills is that school is designed around and evaluated by a linear model, which is not the way we learn or generate conclusions.

Socially he is “different” and always will be but it is important to understand that what fulfills him is not unfocused social interaction but items of substance. As he continues to learn to intellectually emulate the innate social skills of neurotypicals he will choose when it is worth the effort (which can be quite exhausting in complex or unknown social situations).

In the end I will tell you congratulations, you are gifted with a very special child with amazing abilities and perespective, which has the potential to change the world for the better. As he grows you will learn to appreciate his non-discriminatory nature, his heightened sense of social justice, his unwavering honesty and his intellectual ability to accumulate vast amount of “data” and come up with amazing insightful perceptions and solutions.

Have fun you are engaged in a wonderful, although often frustrating journey, and by the way do not let his I.Q score freak you out if they are unfathomably high.

bookwormde

[NotUrsula]

All good advice, and now I'll add a quirky side issue: be prepared for lots of semantic arguments about lying.

Aspergers kids need to be able to "lie" to get along in the neurotypical world; to learn the art of the social fib, to lie by omission so as not to hurt others' feelings, and to fake certain types of rote interactions, such as replying to "How are you?" with "Fine, thank you." even if he isn't. You have to give them permission to do this. However, they tend to have real issues with understanding the difference between this sort of thing and a serious lie, though most Aspies lie very poorly unless they really work at it. (But don't let anyone tell you that an Aspie categorically cannot lie -- they can, and some of them get very good at it if they set their minds to it.)

Do understand one thing: while most Aspies do want to have friends and a social life, they tend to define friend pretty loosely. My DS11 has not been invited to a birthday party since kindergarten, and did not see or speak to a single schoolmate over the holiday break, but if you ask him he'll tell you that he has lots of friends. To him, a friend is anyone his age who will have a conversation with him and not become impatient.

[bouncycat]

I agree with all of this, I have a 10 yr old who has been diagnosed with this, but a mild case of it. He has the social disability, and doesn't have too many friends, and when he does, he's a very strict "by the rules" kid. There are times when he drives me bonkers, and then other times when he just is the sweetest thing ever!! It is a hard uphill journey, but it can be very rewarding as well. We had AP's to disney last year, and loved quite a few of the rides, but not the "loud" ones, Imagination at Epcot he actually cried on, and that's the tamest ride there! I didn't understand, but I didn't push the issue either. We're going next week with his "chicken" cousin, it'll be nice to see how he reacts to that challenge!! I love my son dearly, and with this and everything else going on, I wouldn't have his personality any other way!!!

[mechurchlady]

My mother was never diagnosed for any brain quirks or psychological problems and is 83. I go through some of the same things with her as do the parents I see on this board so that is why I am here, to learn. Today she screamed for me until I got up to get the newspaper and mail. She cannot understand anything but that she needs the newspaper and the mail even if I need to wash out my eyes, go to the bathroom, or find my shoes. It is hard at times to live with someone who has limitations like she does but I love her and have learned some tricks like she yells too often then I just make her wait. I now just stop any arguments and have to fight the urge to get her on the right track. I learned a lot from the nice people here.

Bookworm has spoken and what he said is good advice. He is right that your son is very adaptive which can cause a regular doctor to not see anything wrong. Also for me I cannot tell people outside this board all of my quirks related to SID/SPD. To a person with a neurovariation (quirk) their quirk is normal and how they see the world is normal. Like to the kid in the story below it is standard to call items by one name. It does not matter if others do differently, to him it is the norm. If a person does not know something is abnormal then they might not mention it to a clinician let alone anyone else. As you get older you are more likely to have adapted, hide stuff due to your understanding of society (social peers) or think thing nothing is wrong.

Sending you Hugs and chocolates and warm wishes and good luck.
Laurie

http://www.disboards.com/showthread.php?p=29081183

Does the following ring a bell? She is another of my favourite posters here.

We had a similar situation with youngest DS. (this is kinda funny so hopefully it isn't offensive to anyone) He only has one name for things, things cannot have more than one name. For example, a soda is a soda. It is not a "pop", a "coke", it is a soda, and he will correct you if you call it something else. Well one day (this has been a while ago) he was in the bathtub and pointed to a "certain part" of his anatomy and asked me what it was called. And I realized that guys tend to call it by several different names depending on who they're talking to. But I needed to find one name that would be appropriate for life, and for any situation. It actually took more thought that you'd think. One name for "it" that would work with a doctor, in the locker room, with a girlfriend or wife, with a babysitter, through his whole life and in any situation would be appropriate, so do you go with a slang name? the medical name (which sounds good except guys don't talk like that to other guys)? you can't use a kiddie name... which word do you pick?

And then about a month later, I found out that the day care he was attending (just for a few hours a day during the summer) he had gotten in trouble for calling it the word I'd taught him. Apparantly at "her" house they don't call it that (and was quite snooty about it) and while she certainly knew about the autism, she didn't understand. I give up.
:lmao:

[C&G'sMama]

To OP. I have to echo what everyone else has said. DS(5) was "officially" diagnosed with AS this past July. But from the time he was 3 I always said "there's something wrong with that boy"(said with lots of love and a smile). I love him to death but I found I use my sick sense of humor a lot). Of course we got a lot of you're not strict enough with him or he's only 3 or he's only 4 or he's fine.

Right after he was diagnosed DP(koolaidmoms) sent out a letter to our friends and family. The crux was "what has changed since he's been labeled? nothing, he's still the same DS as he was before, it is us that have put a label on him". For us we felt the label was necessary to get him the services he needs. He is in OT, PT and pragmatic speech. The kid is brilliant but he couldn't hold a pencil or crayon to save his live and he always fought us on it. It would be frustrtating for him because there was a lot in his head but no way for him to get it out. So we started him on typing. But he has made progress with the PT, it's not great but at least he will do some writing now.

I can relate to what Disdreamin said about friends and adults. Kids in his class just don't get him. But he charms the pants out of most adults he meets. I basically say "kids his age bore him". Because of his needing PT I thought putting him in sports at the Y (no pressure) would be good for him. We did baseball and basketball. He ran around the gym yelling "I can't do this, I can't do this". He has a hard time with any thing that doesn't come easy to him. By the last session he lined up with the other kids and did stretches. I cried.

Now we have him in gymnastics once a week because we feel it is good for his cooridination but we also put him in Chess Class once a week at the local chess center. He has found kindred spirits. It's seems like most of the adults and children "get" him because most are "like" him. Very smart, introspective and not the best at socialization.

So I guess I agree with the posters that say get him tested, just in case, for the future. In the mean time it sounds like you are doing an awesome job.

[BeckyScott]

She is another of my favourite posters here.

Awwww....! :hug:

OP, you could have been talking about my oldest son, who just turned 11.

He's always been a bit quirky, but it was hard for me to judge since youngest DS is autistic I don't have a very good frame of reference. Not too many friends, usually just one at a time, and still tends to parallel play with them. Very smart with technical stuff (his teacher last year used him as her personal classroom IT person). His big issue is very little concept of apathy. He already has an ADHD diagnosis, but that didn't explain some things. And he has great coping skills during the day, so his teacher hadn't noticed anything, but when he gets in my car after school all heck breaks loose.

What I knew, was that something wasn't quite right, but I couldn't put my finger on what it was. (I'm not a doctor, for heaven's sake!) He had been having problems in school, bad grades, lots of problems in math, so I requested the school have him tested for a learning disability. I really just outright told the SpEd Coordinator that I thought something was going on but I couldn't figure out what, and I mentioned Aspergers too, because he does have a sibling with autism (which she knows, of course) and it wouldn't be crazy unusual for it to run in the family.

The reason I went thru the school first is because I called the children's hospital where youngest DS had been diagnosed, and I couldn't get through the "gatekeeper" there, and she also said that even if I got an appointment, it would be a year out. Around here, you need someone to help you get through the gate. I also contacted the local Regional Center (which is a Department of Mental Health thing) and talked to them, and they sent someone over to ask me a zillion questions. Having someone else think there might be a possibility, will help you get through some of the red tape.

So the school tested him for LD and also did an Asperger's screening. (they can't diagnose, only screen) What came back was that he didn't have an LD. What he did have, according to his IQ test, was a processing problem. The autism coordinator said that's pretty typical for the spectrum. And the Asperger screening came back borderline but yes. It was hard for them because he has developed such good coping skills during the day, they had to really rely (and believe) what I was telling them.

This all happened literally the week before Christmas break, so I'm still working on stuff. We will be having an IEP meeting shortly. Now that I've got the school backing me (I'm still waiting for the Regional Center results) I should be able to get him in to a real evaluation. Getting past the gatekeeper has been our biggest problem.

[Minnie M6]

I am really overwhelmed by everyone taking the time to share information and personal stories with me. I am SO glad I posted yesterday. It has been an emotional couple of days, and since starting the Tony Attwood book last night I am more convinced than ever of the diagnosis. I was reading and crying and feeling like I need to share this information with my parents and others who love DS so that they can better understand him. I read just the first section of the book (less than 10 pages) and I can't believe how many of the behaviors he exhibits or has exhibited in the past. These are things we have talked about for years but never realized that there could be some reason for them, if that makes any sense.

From the little things, like his atrocious handwriting, to bigger things, like the discrepancy between verbal and performance IQ, there were few of the "pathways to diagnosis" that didn't apply. DS has a 20 + point difference between verbal and performance IQ when he was tested in 2nd grade (verbal being higher) and I remember wondering and asking at the time if that signified anything. They told me he was just so strong verbally that it made his performance seem weak by comparison, or something to that effect.

The clumsiness and dexterity problems definitely apply- DS is 9 and just this fall learned to tie his shoes! We keep him involved in sports, because while he doesn't excel at any of them I feel like as long as he is enjoying himself it is good for him to have basic knowledge of different sports. We, too, have done sports through the Y and church leagues to keep the pressure to a minimum. C & G's Mama, your post really made me think that we should try harder to find an activity (like chess) that he really enjoys and that would allow him to spend time with people who have similar interests. He does love scouts and goes to the day camp each summer- it is one of the best weeks of the year for him. He also loves baseball but he will never be great at it, sadly.

I'm rambling again....this has just been so eye opening and I am so grateful to everyone here. :flower3: Thanks to all of you.

[mechurchlady]

It took me 50 years to find out that I have a SID/SPD which is a brain quirk. It skates very close to autism at times. I was lost in the cracks of a school system that at the time put me with the boys as I was more able to deal with them. I look back at all the things in my life and all my sins and flaws and light bulbs pop and I realize that I was not bad but just not made right. You are not alone in looking back and saying OMG that so fits XXX to a tee. I see it on this board too often.

Ramble on all you want. I am in pogo playing gin and having coniption fits with the bot, playing a sim game, am on another sim, and here and popping over to another board when not here. I need something to read as I do not have enough stimulous so please do keep posting and asking questions. Trust me there is at least one person on this board who has gone through what ever you are going through in some way. And as for tying his shoes there was a post here called "I see Londan, I see France" about a parent celebrating that her son was going to be wearing regular boy's underpants. He was up in age like nearing teen if I remember right. Around here you see them tiny steps and join in the celebrating.

The bot needs me to beat it in gin so I leave you with a ton of hugs and chocolates and warm wishes and prayers and head ache tablets.
Laurie

[DisDreaminMom]

Bookworme, I love you so much. Just have to reiterate that. I know I've told you before. Everybody else, know how much these chats help my sanity. You are all kindred spirits and I wish my area had people just like you in it. Ditto almost word for word all the PP's kids limitations. How weird is that? I wonder of my kid would be happier with a few of your kids to be around. I call his playing technique "concentric circles". He doesn't necessarily want to play "with" someone, as have someone there he likes playing near him, available if he needs them.

We belong to the Y, and I have thought of putting DS in some in of sports, though he shows no interest in anything unless he can pretend to be a pink poodle. My husband is 6'5", and DS is huge for his age, so the PE teacher at his school has been trying to get him more geared towards ball sports. Plus DS has an incredible basketball throw, but I just don't see him getting that into it. I wish he would, because it might be his best shot at friends, rule following, and having a social life later. I also thought about martial arts, though DS might kill someone by accident if he's mad. He's a strong kid!!! He's like the Incredible Hulk "You won't like me when I'm angry..."

Maybe I should teach him chess (but does that mean I would have to learn, too? Checkers is my limit...)

Anyway, thanks to all of you. So much info, so many headaches avoided.:love:

[PrincessMom4]

I know exactly what you are going through. They can't offically label her, but they have ruled out a few conditions. Right now she has the ODD with ADHD label on her. I know something still wasn't right so I purseued even more help with my DD9 who has a lot of behavioural problems that non of her other 3 siblings have. She gets into these fits of rage and I do mean rage. We have tried almost every technique there is out there (time-out,re-direction, positive reinforcement, etc) and nothing worked...well it would work some time if the mood was not as bad. She would get these phases were she would repeatly tap on something or grunt similar to what austim or asperger kids do. One worker thought she might be that so we had her tested but she only scores on part of the test, BUT not enought to make her that condition.
She is getting better now and is somewhat more manageable and we hope it stays this way.
I don't know exactly what you are going through but I totally can sympathize with you.

[mechurchlady]

Finally ready to go to bed and stopped by to see what was new. As for the kid with rage it could be from something other that ODD For mom I just ignore most of the manure from her but sometimes there are tricks I use. I tell her the facts then shut the door to the conversation, end of convo. If she is screaming for me over and over for something not important then I make her wait and count to 10 then take a few steps and stop if she starts up. That has worked. Yesterday was bad as she would not stop calling my name because she wanted the newspaper and the mail. She just cannot, even at age 20, understand that I was asleep so shut up and wait. NOW is all she sees and not that other things have to be done.

The apple often does not fall far from the tree and in this case I fell from a nut tree not an apple tree. The worst thing about neurovariations and brain quirks is that each individual reacts differently and too often there are those that are borderline or who slip past testing. The symptoms of each disorder are not a unique set only to themselves but shared by other disorders and even diseases.

NAP ATTACK

Now before I sleep I send you all big hugs, warm wishes, prayers and my mother for the week.:lmao:
Current offer is one slightly used mother for two of your kids, see Bwana Bob at the Jungle Cruise for details.pirate:

Hugs and chocolates and warm wishes and prayers:grouphug: :cheer2: :hug:
Laurie

[BeckyScott]

His big issue is very little concept of apathy.

I can't believe I wrote that.

I meant empathy.

That's what happens when you post without enough coffee.

Okay, where was I. Oh, yes. We have a lot of trouble getting either boy to particpate in sports. We discovered fairly early on that anything involving a team wasn't going to work. The only two things we have found to be even moderately successful were swimming and taekwondo.

But with only moderate success. Taekwondo neither one of them really loved, and oldest DS announced to me that he didn't "believe in sweating". They both had problems knowing when it was appropriate to use their newly-found techniques. Oldest DS preferred practicing his kicks on his brother. Youngest DS used his stranger-danger escape technique on me one day when we were leaving school. The good part of the whole thing was that their gross motor skills and endurance did improve quite a bit, especially youngest DS since he was more delayed anyway. Youngest DS also needed me to "para" for him during class, so it's not for a mom that is easily embarrassed. (I think most of us got way past that a long time ago) Secondly, since oldest DS announced his hatred for sweating, I put them in swimming class. (ha ha! Mom outsmarted you!) I would have done it anyway, from a personal-safety perspective. Oldest DS did all right and did learn to swim, although he's no fish. Youngest DS didn't ever catch on-- he does love the water so that is even more reason for it to be a concern that he couldn't swim-- but he refuses to put his face in the water, he also needed a "para", he won't jump in from the poolside--

So we are still searching for a physical activity that works for them. There isn't a Y here and there isn't a Special Olympics program for children. The city does do adaptive swimming (opening the pool for an hour a week specifically for special needs) and adaptive bowling (the kids got bored about halfway thru the first game).

[PrincessMom4]

Well then now believe her misbehaviour is from an injury she got while she was in daycare at 17months.

[Minnie M6]

I have to say, I agree with your son, I'm not a big fan of sweating either! Swimming was a great idea- maybe even water aerobics or walking? Of course, he would be the youngest in those classes by about 50 years ;) We did swim lessons for DS also- he was signed up for aikido but at the last minute DH said he just wasn't comfortable with DS learning martial arts techniques. I mentioned in the first post that we had an incident in September with a friend- DS was at his best friend's house, the only friend who consistently used to invite him over, and she was teasing him, calling him a baby when he got upset about losing a game, and they had a physical altercation, and he bit her :eek:. Nothing like that had ever happened with a friend (he gets really angry at home and lashes out at his sister occasionally but not to that degree), and it completely devastated us. DS cried all night thinking he may have lost his friend. He lost all privileges for a week and write apologies to his friend and her parents. That is when I started looking for answers about his behavior- not excuses, but answers. I told his friend's mom that I would not try to explain or justify his behavior at all- just apologized profusely. The invites to their house have slowed down dramatically and I can understand that. It was an awful few weeks after that happened.

[BeckyScott]

Oldest DS does have "anger management issues" or "a short fuse" or however you'd want to phrase it. Only at home though, so far. He gets very very angry.

As far as I can analyze, it's from a couple of things. One is that he doesn't process well, so my nagging at him is just really irritating. Secondly, since he has problems with empathy he doesn't understand that others have needs and therefore can't figure out why he can't have everything he wants, when he wants it. Third, and I hate to say it, is that I spent a whole lot of time working on youngest DS. And oldest DS resents that. And he resents that he doesn't have a "normal" brother, but that resentment is even more extreme than you'd have with a typical child because he has issues of his own thrown in there.

The absolutely one time ever in history that oldest DS was okay with youngest DS's autism, was last summer when we were at Disney. Because of the GAC.

However, I can tell you, no matter what we give or do for oldest DS, he wants just a little more. I could spend 8 hours sitting with him watching him play video games, and if I got up after 8 hours, he'd be mad and he'd want 15 minutes more. So there's no way I can win.

This is a huge concern of mine, as I also have to look at the future. We don't have much close family, and no close family that is their age. Which means it's entirely possible that oldest DS will need to do some advocating, at some point way in the future. Right now, he really doesn't like his brother and has no empathy for the situation. So what happens 30 years from now?

[Minnie M6]

One other thing I just thought of regarding both anger issues and exercise....
we had a wonderful yoga teacher who came to the kids' school and taught brief yoga lessons in some of the classrooms. As a result, DS went to the studio and took some lessons that were specifically for kids. They were offering weekend workshops for kids with anger issues. We never signed up for those due to conflicts, but thinking about it now I may check into it again. Yoga is so relaxing but they also made it fun for the kids. They earned points for their behavior in the regular classes, and DS is all about earning points!

Would you believe the yoga teacher no longer comes to school because parents complained that their kids were learning "new age" stuff??

[mechurchlady]

Hugs Becky tightly and not letting go. That is the word I been looking for for my mother, empathy. She has no concept of the effects of her wanting something NOW. She cannot grasp that at 5am I am not going to get her medicine unless it is summertime and I have a good immune system. She cannot understand the effect of her words on me and others.

Becky, you probably would buy a coffee hourse if you won the lottery, lol. I did bowling for high school and college PE and it is boring. You got to think like the kids. You toss the ball then wait for it to return then toss the ball then sit down for a long time then repeat. Horse riding would be good for them. There has to be a no sweat sport that keeps them busy. As for not putting his face in water you can still teach him how to dog paddle and adapt strokes to his needs so he is safe.

Big hugs and chocolates but sorry all the coffee is reserved for Becky.:cheer2: :grouphug: :hug:
:surfweb: <--- That is Becky.

[DisDreaminMom]

You all crack me up. Here's something funny- my husband and I are both horse people, we ride and work on farms and have always had horses. The first thing my daughter smiled at as a baby was one of our horses. Hours of family enjoyment, right? Horses and being outside in the safe country side, etc? Right? What kid wouldn't like that? Well, mine! DS hates horses, hates being hot, hates being outside, hates bugs, hates grass, hates anything to do with going to the barn. Guess who has severely cut back on riding and her horse time (something I swore I would give up for nothing, by the way. It's just so hard to hear him screaming and crying while I'm trying to enjoy my time at the barn). And the worst part? We have probably one of the kindest ponies on the planet that could care less if that kid screams like a police car all day.

I brought some supplies to our local riding for handicapped program (call your local therapeutic riding center, they also cover autism. It's is excellent for some kids- lots of Aspergers folks have horses and ride-it's very calming, plus you never have to talk to anyone but the horse) and the director asked me if my son wanted to participate. You should have seen the look on that woman's face when I told her he hated horses. However, he has spent 8 hours straight sitting in a chicken coop full of about 100 chickens perfectly still with a smile on his face the entire time. Too bad I'm highly allergic to chickens, cause he loves them.

And, yeah, Mechurchlady, it is all about the lack of empathy. Temple Grandin has some interesting words about this topic. I suggest reading some of her books. And don't feel so alone, either. My grandmother, and aunt were/are Aspie and I know exactly what you live with every day. You keep giving all of us hugs, but you're the one who really needs them. I hope you have some good support and get a little time to yourself every now and then. I'm guessing you have a tough life, and I am truly sorry.:hug:

Also, I hate to sweat too. I think the kid that said that is just smart. You gotta give him credit...:lmao:

[C&G'sMama]

I too love reading everyone's posts and the feeling of not being alone. Of DS is "normal" in his own way. I worry about the anger. He's only 5 and I can still pick him up. And he's not a small kid. He's 5yo, 4ft talel and weighs 70 lbs. (no he's not fat, husky but not fat):goodvibes. With the anger how much is the Aspergers and how much is the Irish temper he inhertied from me? How much is manipulation? etc. We are very strict with him because he needs the boundaries but I feel so bad some times because I don't think he can always help it. We do time outs, we take away privleges etc. But once he's in a zone he can't get out. So we make sure he's safe in his room and eventually cries and screams it out. I will sometimes go up with him and rub his back. Now I'm going on and on but this one bothers me and worries and everything else.

He doesn't really have any friends. There is one girl from pre-k last year that is also at his school but in a different class. They parellell play. We think she may be somewhere on the spectrum too. We also try to remember that what he thinks is happiness is different than our idea. He may be in a room full of kids playing by himself and I feel sad. But I look at his face and he's happy. I just worry so as he gets older and hits his teenage years.

You all are an awesome group and it's nice to have people that just "get it". To Minnie M6, thank you for starting this post and sharing your story.

[mechurchlady]

I love to play Pgo games and talk about one of them rages, I would scare most of you if you saw me in one of my rages. I sit there arguing with the bot I am playing gin with and cussing him out and ranting stuff I cannot say here as ... and accusing the bot of cheting and saying IT IS NOT FAIR. Once I get in one of the dark raging funks then only rest and chocolates will get me out of them. Any safe allergen like ice cream and chocolate normally make me racing high and that little edge sometimes helps but usually not. I know that I am raging but just stay off of sites that it is dangerous and avoid mom.

My rage comes from life stinks, not fair, being emotionally hurt by people who use me, and exhaustion especaillly no sleep or nervous exhaustion. I have done road rage but control that well and snap out easier as I know better but in the game anything goes as nothing is being hurt where as on the street I am trained to stop as I know the outcome.

I am sitting here rocking and can tell you that people on the spectrum can get the "not fair bug" which is where the unjust, unfair, and bad things in life build up until you explode. For me this is the only place that I really vent or talk about the unfair things in life or mom is here. I wonder what is wrong with mom and I know that I am not on the spectrum but I seem to make a lot of trips to the spectrum, lol. :rolleyes1

You need to find out what triggers the rage. For me it is exhaustion, mother going off on one of her moods, and the "not fair bug". Those three really tick me off and light my fire.

I have a wonderful supportive friend named Calvin. The house is painted as is the lawn, plants, sidewalk, driveway, etc. and the tape is not removed in places and there are touch ups needed but the house is painted. He is a wonderful brother like friend who cleaned my kitchen. I have spatulas in a container by the sink, other tools on the counter, and cups on the counter for easy to get to them. We cannot find two of my new pans, everything is on the top 3 cabinet shelves, I finally found the spatulas and utensils but not the tools, did I mention I cannot hardly reach the top 3 cabinets, and he lost mom's broom, toothbrush and soap dish. I found the broom recently but not some of my tools. He is a MELTDOWN causing lovable big teddy bear who sings so sweet, talks funny, and reminds me of my dad in many ways but MELTDOWN envoking like me having to try to cook dinner with my best pans missing, tools lost, my favourite cooking pot is full of cleaning stuff, drip pans from the stove are in the sink, and where is mom's toothbrush. Like a brother but at least he goes home eventually.

I rambled today and am so sorry for being long winded.
New deal on the table is one Calvin and one slightly used mother for 10 of your kids. See Bwana Bob next to the Jungle Cruise for details.:rolleyes1

Hugs and therapeutic choclates to all of you.
Laurie
:laundy: :grouphug: :cheer2: :dance3: :hug: :cloud9: :wizard:

[Luv Bunnies]

I just found this thread and want to chime in.

To the OP - my son has Asperger's. We knew he was on the spectrum when he was 3 and it became apparent that he had Asperger's when he was 7. He did pretty well in mainstream classes through 5th grade. We were always able to choose a teacher for him and then worked very closely with that person to keep him on track.

Middle school was another story. You mentioned your son has some organizational difficulties. These might really come into play in middle school when a lot more is expected of the kids. My son had a tough time changing classes and adapting to the rules and routines of different teachers. We had an IEP in place for him but we didn't feel the district was doing enough to help him be successful. We ended up pulling him out and putting him in a private school (at the district's expense) with a program specifically for Asperger's. We are very lucky to live in a city that has this type of program!

My advice would be to get him diagnosed now and get support procedures in place if he needs any now. When he gets older and reaches the higher grades, you'll be in a better position to ask for more services if he needs them. He may do just fine and not need additional support. But if he does, you'll have your ducks in a row and be able to get him help faster.

I laughed when you said your son was like a police officer in his class. My son's preschool teacher said he was her schedule officer. If she deviated from the schedule just a little, he was all over her!

Kids with Asperger's are truly amazing! My son has opened my eyes to so many things I never would have noticed without him. He shows us a different way of looking at things and sometimes we can't help but laugh at his take on the world. Like on day when I was reading everyone's horoscope at the breakfast table. When I got to my son's it said, "Turn over a new leaf." He very matter of factly said, "Oh no, I don't have a leaf.....uh, should I go outside and pick one?" The kid was dead serious! He now knows what that idiom means!:)

[kaffinito]

Big hugs to you! :hug:

You are on the right course. I can echo what Luv Bunnies said about getting your son diagnosed now in case he needs the support in higher grades. He might not need it all now, but he might later.

I have two that are Aspies. The oldest boy was diagnosed at age 12 (?) after we got his bi polar disorder and his ADHD under control. A month later his little brother was diagnosed. I cried for two months straight. Our kids have quirks, and they can be strange and very difficult, but they are also really cool to have around. The youngest is the "professor" who can tell you anything you want to know about American history. The oldest is "Mr. Science" and he's also my rule police. The oldest is more autistic than the youngest.

Calendars, schedules, and note cards for reminders help at our house. So do signs in the kitchen and the bathroom as to the "proper" procedure. (I know, but it does work!) Letting my kids be themselves and not stressing out over their lack of friends or playmates also helps. If it doesn't bother them, then it shouldn't bother me. What I want for them out of life isn't what we're going to get, nor is it even realistic.

Every now and then they want kids to play with, so they go out and find some. The youngest prefers drawing and painting to any thing else, so that's what he does. The oldest started reading fiction (!) so now I have to put up with angry teachers who are mad because he reads in class. He also skips school to go to the library. The youngest plays softball. He doesn't mix with the other kids on the team well, but he's happy so that's what counts.

Right now with the oldest we're still working at buying things from stores and adding in tax. With the youngest I'm back to working on toilet training and wearing winter appropriate clothes.

It's mixed bag (and a mixed blessing) when you have Aspie kids. The thing I try to keep in mind (and sorry for the book!) is that I feel upset, frustrated, and a sense of loss over MY dreams and hopes for them, not THEIR hopes and dreams for themselves. I hope that makes sense to you, but it goes back to our hopes that they have friends and can function like other people. Well, they aren't other people and never will be. They need to find their own way and their own happiness in life.

So, I hope some of this made sense to you! Hang in there, and if you want to PM me feel free. :hug:

Karen

[BeckyScott]

We tried therapeutic horseback when Justin was in First Steps. We had gone to some farm-open-house thing where they were doing rides on miniature horses and he liked that. Mentioned it to our OT and she hooked us up.

Total backfire. :lmao: It was the size difference. He was afraid of being up that high. (he still is afraid of heights, that was just the first time it had been an issue) Plus, the stable, there was a mama cat and a litter of kittens there, so you know where his focus went. And he thought it was great fun to play with the sawdust. :scared1: (cootie alert!) So while he did have quite an adventure, and the OT played along and did some things with him, the actual riding part didn't happen. She tried the smallest horse, and then even tried a mule. I think it was a mule, it was a long time ago, it wasn't a horse, it was something else they had that was smaller.

mechurchlady, when oldest DS gets angry, he has a very difficult time calming himself back down. I can't do anything to help either, it doesn't work. And because he can't calm himself back down, he just digs himself further and further in. Makes it worse. What starts out as a fairly minor thing, he stews and stews and gets angrier and can't calm himself, and next thing you know he's fully exploded. Honestly, I keep thinking one day he's going to end up in jail. Which scares me. Because he can't calm himself back down.

For example, yesterday when I picked the kids up, I gave a ride home to DS's friend who lives a couple blocks away. He's DS's current "one friend" and is over at our house sometimes. His mom works so some days he will come over after school and stay until his mom gets off work. No biggie. But yesterday I was just not in the mood to have one more kid in the house. I pulled in his driveway and oldest DS started in, he wanted this boy to come to our house. I said no. And then it started. He wanted him to come over, why couldn't he come over, I never let him come over. And then, well then can I stay here with him? No. The boy got out of the car and went in his house. So we get home just like one minute later, and DS is throwing stuff as he crosses the back yard. Whatever was in his path, it got thrown. He got to the door first but I had the key, so he stood at the back door kicking things. It's really no big deal, the boy would have only been here about an hour, and I told them that he could come over today because they have an early out. We get in the house and he's tossing his backpack, and youngest DS wanted on the computer but oldest DS beat him to it. So now youngest DS is screaming. So now we have a scream-fest going. Ugh. Something like that happens every day here. The only way to calm them down is I let oldest DS use my phone to call the kid and they met up online in some game room.

They fight non-stop. Over Christmas, they fought over the computer every day. Christmas Eve day they were fighting over it. Then that evening we opened up some presents and there were Wii games. In a split-second, literally like maybe 2 seconds, they both wanted on the Wii and they wouldn't have cared if I had put the computer out in the yard. :sad2: So then they fought over the Wii for about 3 days.

I use a timer all the time, I own four of them if you don't count the one on the stove, that isn't "fair", which seriously how much more fair do you want? Ugh. It's just frustrating.

[mechurchlady]

He got bit by the "Not fair bug" and it was a tantrum. I would explain to him the rules and tell him why he is being punished. Then explain what he should have done instead of the fit.It takes firm hand and self awareness. NOT FAIR is a trigger for me and I watch for that now. It is hard but I have had to self teach myself to turn off a game in the middle or cry or scream for a bit then let it go. He has to learn that what you say is the LAW because when he is 31 and his boss says that he cannot keep the company car over night then he will not be having a hissy fit. When he is at church he will not storm out because he did not get his way like being in the choir.

Bookworm may have ideas as I am not a parent but am on the same side as your son. As for the computer and stuff you need to set a limit and rules. Homework on the computer sets priority and no games until online homework is done. I would just draw up charts of chores and everything and be a mean drill sergeant :lmao: but that is me. Sometimes it is not autism, spectrum or any disease or disorder but instead everyday manure kids toss at parents and the seemingly tag-team sibling attack on the wits of parents. Is it autism or just a kid who is having a tantrum? You need to set them boundaries. I get that rage on the road but there are boundaries like people staring at a fat lady, jail time, death, hospital visit, funny farm visit, and paying money for damages. Those are my boundaries but on the computer I still have my fits with the bots because I know how far I can go and then when I am about to type "stop cheating you xxx bot" then I stop myself as I know it means no more games. It is a lot of work on the person seeing the problem then acting to stop or lesson the action.

Note: not everything in life that kids throw at you is related to autism or any disorder or disease or syndrome but is from kids being kids. All siblings seem to tag-team on parents and they fight over computer time and they do have hissy fits when they do not get their way. Mom reminds me of my one tantrum. I laid on the floor gently and then went at it and she did nothing so I got up and no more tantrums, lol. Later in life the neighbor girl did the very same thing and when mom did nothing she did it later a second and last time.

So there are still no offers on my mother. I am going to talk to Bwana Bob and see why no offers. She is gently aged and well preserved and comes with her own set of wheels.

Hugs and chocolates and aspirin
Laurie:hug: :laundy: :grouphug:

[BeckyScott]

I think that is maybe why it was sort of a relief that he got the Asperger's screening at school that came back as yes.

I know that what he's doing isn't appropriate, but it makes me feel a bit better that there is some sort of explanation for part of why it's happening. Not that it doesn't need to be dealt with, and some behavior modification put in place. But that, well I guess, that I'm not a bad mom. I know I'm not, but now there is "proof", I guess?, that there is something else going on there that isn't my doing. If that makes any sense. It also gives me a better idea of how to approach fixing it. It does make it harder, though, because now I'm trying to figure out how much is Asperger, how much of it is brat, and how much of it is from the Adderall and puberty. Not a good combo. :scared1:

The real kicker is that of course, he has developed amazing coping skills. So I'm the one that sees it all, he doesn't do it "outside", he bottles it all up during the day and then it breaks loose when he gets home. I have often thought we needed a Dr. Phil Camera. :laughing: I have already decided that once his IEP meeting is scheduled and I know I'll be seeing the school staff, that at least I have a camera on my phone and enough memory to do about a 30-second video clip and it shouldn't be hard to catch him since it happens almost every day... I think they would be completely shocked to see the way he acts at home.

Perhaps it would be a good New Year's Resolution, huh?

[Minnie M6]

Wow, I could have written that post, BeckyScott. When I talked to my Mom last night about the reading I've been doing and how I am convinced that DS has this diagnosis, she told me that the fact that he copes so well at school and saves it all up for us at home may make it difficult to get a diagnosis. The psychologist who did his IQ testing is a friend of my mom's, and mom mentioned to her in confidence that we were looking into this diagnosis, and she acted like we were way off base. When she tested him he made eye contact and answered all of her questions, even elaborated on each answer (as in told her why he was answering that way). Well no surprise there, he loves one on one attention and having a captive audience. I'm thinking the 9 years I've spent with him verses the several hours she was with him make me more qualified to speak to his behaviors/ symptoms. At this point, it doesn't matter whether someone else who evaluates him thinks he has Asperger's (and she wasn't screening him for that), I now know what is going on with him, and I too find great comfort in knowing that it's not (completely) a function of my parenting. Although I have major work to do in terms of how I respond to him. He pushes all of my buttons and I get extremely frustrated.
I remember when DD was born the feeling I had that it must not be my fault that Clay acts the way he sometimes does, because she could not be more different than he is. Like I said, I always knew he was different, but knowing why is such an emotional relief. And I think it will help me to relax a bit more about his quirks. When we were at Disney my Mom got so aggravated with him about his table manners and pickiness about food brands and textures. I told her last night he will no longer be reprimanded for things that he really can't help. Yes, he needs to have better manners, but I refuse to make a huge issue out of his refusing to eat certain things. In fact, the bigger deal I make out of it the more of an issue/ battle it will become. No more. Oh man, I'm doing it again.....rambling. Sorry. This has just been such an awareness issue for me and I so appreciate all of you! There's nobody else i can talk to who will really "get it." Not even DH.

[mechurchlady]

http://www.sensorysmarts.com/signs.html
SID aka SPD is sensory relate issues. Some rumour that it is on the edge of the spectrum or even part of it. I have SID/SPD and too often visit the specturm. There is a higher than average rate of SID cases in Tourettes and autism/Asperger's. Read up elsewhere and you will see that he may have a touch of that too.

I grew up with table manners but boy now mine are atrocious. I will not go into details save that I would flunk charm school and be banned from charm school. I drain food, avoid slimy eggs, shovel food like I was in a hurry to get another bite in me before I am done, and at home use my fingers often.

Society can be very cruel so you can hide in a shell of your former self or you can adapt and play by society's rules even if it makes you sick or takes everything out of you. You are to sit quietly and smile and keep swimming like all the other fishes even though you are really a swan. You have to hide things like picking, setting for hours dismantling a piece of cloth, and fears. Just smile and go along with the group.

Big hugs and good luck with the diagnosis.
Hugs and dole whips an chocolates
Laurie:hug: :wizard: :surfweb: :laundy: :cheer2: :grouphug:

[DisDreaminMom]

Minnie, I had the exact same concern about my son's diagnosis (his was done when he was 5). Pediatrician didn't see anything wrong with him ("He makes eye contact.") His teachers in Special Ed (he had motor delay, etc.) just thought he was POS-Non specified (I forget all the words, look it up- it just means developmentally delayed). It was just his Pre-K classroom teacher that felt that he needed much more help than he was getting. He raged a lot and could be very impulsive. I finally got the pediatrician to write me a referral after a particularly long afternoon in his office where he actually had to talk to my son (not using yes or no answers) (my DD had strep and he had to get tested too. He actually gut kicked the doctor when they swabbed his throat).

Anyway, we went to University of Florida hospital for initial consultation, and the psychiatrist looked at me like I was a little nuts myself. My kid talks profusely, looks right at you, asks for help, engages total strangers. What could be wrong with him? Luckily, at the time he was completely obsessed with toilets and light switches. So I pulled aside one of the "testers" (they had a team approach) and told them to ask my son if he needed to go to the bathroom. He went with them seven more times before we left, drew toilet pictures, etc. When he wasn't dragging a captive audience to the toilet so he could gleefully observe the toilet in all it's glory, he was testing every single light switch on that wing of the building.

One of the best things about the diagnosis was them telling me that my son has poor "executive function". Tony Attwood has some interesting ideas on this topic, too. I just thought I was a horrible mom because my kid can't sequentially dress himself or do much of anything.

When my son was at U. of Fl for diagnosis, I was in the waiting room in the pediatric psych ward. It was right after the Fall time change (like a week afterward). The clock was off by one hour and I totally lost it. I was waiting until 12:00 noon for my son to go to lunch with me, and when I realized the clock was wrong, I had to tell the first "official" person I saw, which happened to be the Psychology Department head. Looking back on it, the was she stared at me when I told her about the clock probably meant that she was thinking the wrong patient was being examined. So maybe apples don't fall too far...

And my kids fight like cats and dogs. I think my sister and I fought a lot, too. But unfortunately, I had a hefty does of the "fairness" bug, and so does my DD, so it makes us a bunch of highly emotional roller coasters. I'm glad we live in the country so no one can hear us all fight and then laugh our heads off later.

[SueM in MN]

Just thought I would chime in.
First, Temple Grandin's books are fascinating and give a good look into how her mind works. It's interesting how she sometimes goes on and on about a tiny piece of a subject that is obviously very interesting to her (but kind of boring in that much detail to most readers).
Also fascinating was the TV show America's Next Top Model on 'season' 9 when one of the contestants, Heather, had Aspergers (http://www.nytimes.com/2007/12/04/health/04well.html). It was very interesting watching how she approached the different challenges; for example, when asked to look 'happy' she had a lot of difficulty, because she did not have a model in her head of how a 'happy' face would look. But when she was given more concrete examples of what the photographer was looking for, she was able to do very well. Also interesting was that she had great difficulty looking people in the eye, but could connect well with the camera.
There was also an interesting segment of a show on PBS a number of years ago where they were looking at how the brain works. One section was about Asperger's and specifically about the difficulty people with Asperger's have with identifying emotion in the facial expressions of others (part of the 'empathy' equation). Alan Alda was the host and was talking with a college age young man who talked about his difficulty in 'reading' people. He was actually working on it (with flash cards) because his inability to read emotion often meant that he interpreted the meanings of things others said to him. I think the show was Scientific American, but not sure.

[C&G'sMama]

This has just been such an awareness issue for me and I so appreciate all of you! There's nobody else i can talk to who will really "get it." Not even DH.
If it's any consolation. My nephew who is now 9 and in 3rd grade is PDD/NOS. When he was 4 and 5 my SIL used to talk to us and say she knew something wasn't right but the pediatrician said everything was fine and her DH (my brother) said everything's fine, we just need to be tougher on him etc. We told her to go with her gut (this was when our DS was 1 and we had no clue yet). You know your kid.
We have a friend whose DS is also 9 and in 3rd grade and he's autistic. When he was 4 we babysat for him and we "knew". Mom knew something was "wrong" and got him tested. Dad resisted. When he was diagnosed Dad said "they just need to meet their quota".

Today both boys are thriving and both my friend's DH and my brother are great dads involved with their sons. I know for my friend's DH it helped that he had a co-worker whom he respects that has 2 boys that are autistic. For my brother it was when they got the official diagnosis and they started working with professionals and the school system.

So, "go with your gut, you know your kid". You can't force DH to understand but give him time. Probably another good reason to get an "official" diagnosis.

[BeckyScott]

When I had the meeting at school, this is what happened... the autism coordinator interviewed me, his teacher, and did a classroom observation. For our interviews, it was an Asperger screening tool, a checklist, I don't remember exactly what it was called but I could find out (probably Bookwormde knows too) ;) .

When we were going over the results, the autism coordinator had graphed out my responses and the teacher responses. One or two areas we were similar, but most of them we were on complete opposite ends. The teacher hadn't observed anything like what I'd seen at home. She did note, though, that when we pick him up after school, even in the schoolyard he "acts like a completely different person" so she's seen the transition start. Fortunately, the autism coordinator believed me. Because she didn't notice any behaviors in her observation that would point to Asperger's either. But I did point out, and she agreed, that it was possible that he'd developed really good coping skills during the day. And his IQ test came back problematic on processing, which is common with the spectrum, so that also gave her a little insight.

Any kind of diagnosis should involve input from the parents. I know with youngest DS they always had me answering questions too. The problem with the youngest's last eval at the children's hospital was that they didn't run as many tests as usual, just the WISC and a language test. There wasn't any OT or PT stuff, or there is one screening/test for the child's self-help skills which has always been an issue with DS and they didn't run that. I am going to see if the school is able to do any of those tests, he is up for re-testing this spring. With him at least, he did manage to have a melt-down right in the middle of the WISC, so someone else did see it.

Anyway, my point is, that any evaluation should include input from the parents, and they should take that into consideration. I know I personally would behave differently, better, if I knew I was being tested, wouldn't anyone? If the child understands what is going on, they're likely to act differently than they usually do.

I was wondering if, if anyone is interested and it's okay with the mods, anyone would be interested in joining me in sort of a "challenge" thread? If there are behaviors we want to work on, where we can brainstorm and vent and share progress?

[bookwormde]

Becky

Sounds like a great idea

bookwormde

[KirstenB]

Becky, I love the idea of a challenge thread. Zoe's teacher has given us some ideas already, specifically on getting her to focus on what we need to do before leaving the house in the morning. These ideas were not intuitive to me at all. This is my roundabout way of saying I think our little community here could be of great help to one another, because we all have different ways of looking at things, and experiences.:goodvibes

I've said it before, but I'll repeat. I love our community here. Autism boards can be very inflammatory. I'll venture most of us have enough drama in our lives to where we're not looking for more! Everyone here is very kind and helpful. It must be the pixie dust...:cool1:

[Minnie M6]

I like the idea as well. As much as I am already benefiting from your combined knowledge, a thread like that would be wonderful- for everyone to help each other. I love these boards and how supportive everyone is :love:

[mechurchlady]

Hugs and coffee for Becky.

I have learned so much here for myself and even my mother. I also agree that a challenge board would be nice for problem solving. Too many of us are slipping through the cracks undiagnosed or worse wrongly diagnosed. The apple does not fall far from the tree and I have seen parents realizing they have traits like their kids. Great idea Becky.

Hugs and chocolates
Laurie

Note to self: This time try the right button not the preview button.:confused3

[DisDreaminMom]

I elect Becky the class president. Lead on, Becky!!! And everyone on this thread is very nice. Won't go near the Autism community (in person or on computer) with a ten foot pole after what I've seen and heard...You all sound more like me, anyway.

[mechurchlady]

I elect Becky the class president. Lead on, Becky!!! And everyone on this thread is very nice. Won't go near the Autism community (in person or on computer) with a ten foot pole after what I've seen and heard...You all sound more like me, anyway.
I second that motion and nominate bookwormde as vice-presient.

[C&G'sMama]

I'd love to join too. I can't say how nice it is to hear from others with similar issues and get variuos perspectives from all of you. It is very helpful. Today we had a meeting with DS teacher. He is in K and they are graded on a scale of 1 to 4. Well he got a 2 in fluency for reading so he didn't make honor roll because if you get any ones or twos you don't get honor roll. Now it's not a big deal that he didn't make honor roll in K. But it is a big deal if he's being penalized for something that's typical (I know there is no such thing) for him. It's because he doesn't properly stop at periods and commas and he stops in the middle to ask questions and make comments, imagine that. But the kid that can read "dog" and "cat" gets a 4 which a K should get but anyway....(DS reads Magic Treehouse, A to Z mysteries, anything about animals, the dictionary etc.) And right now AS isn't in his IEP because the diagnosis was made after his IEP was written. So we are going to get the IEP changed. But the other thing is his writing. Again, we don't want that to hold him back. I'm rambling, but I know you folks understand.

Now to the anger stuff. He had his first meltdown at school yesterday. I worry what will happen when he gets older. It's the kind of meltdown he has at home so hopefully this was just a one time thing at school. Tonight he got mad because we didn't have bok choy for dinner. We were going to have stir fry tonight but DP got sick and I didn't get home from work 'til almost 7:30 so we had chicken from the freezer. So it was a 1/2 hour of foot stomping and rolling on the floor and screaming "I WANT BOK CHOY" (and of course part of me wants to laugh because it's bok choy). But it was a change and we all know how our kids deal with change.

So I guess I'm saying that's a great idea.

[SueM in MN]

Anyway, my point is, that any evaluation should include input from the parents, and they should take that into consideration. I know I personally would behave differently, better, if I knew I was being tested, wouldn't anyone? If the child understands what is going on, they're likely to act differently than they usually do.
Parents should always be involved in any evaluation.
Children sometimes look like totally different people in different environments. Some may do better in a highly structured environment; some do worse. And many behave differently at home than at school.
I was wondering if, if anyone is interested and it's okay with the mods, anyone would be interested in joining me in sort of a "challenge" thread? If there are behaviors we want to work on, where we can brainstorm and vent and share progress?
This is the more general board for questions related to disabilities, so I see no reason not to start a thread like that.

[mechurchlady]

So it was a 1/2 hour of foot stomping and rolling on the floor and screaming "I WANT BOK CHOY" (and of course part of me wants to laugh because it's bok choy).
:lmao: :rotfl: I still do no t eat veggies let alone bok choy and have seen a lot of parents who have kids who are not into veggies. Thanks for the laugh though really it is not good and sad for a kid to meltdown but it is funny to think about a kid wanting bok choy.

Proud member of the anti-veggie club.
hugs and bok choy
Laurie

[C&G'sMama]

:lmao: :rotfl: I still do no t eat veggies let alone bok choy and have seen a lot of parents who have kids who are not into veggies. Thanks for the laugh though really it is not good and sad for a kid to meltdown but it is funny to think about a kid wanting bok choy.
Proud member of the anti-veggie club.
hugs and bok choy
Laurie

Thanks Churchlady. I have to laugh or I'll cry or yell all the time. Laughing is much healthier!

[Earstou]

We have a lot of trouble getting either boy to particpate in sports....Youngest DS didn't ever catch on-- he does love the water so that is even more reason for it to be a concern that he couldn't swim-- but he refuses to put his face in the water, he also needed a "para", he won't jump in from the poolside--
I've been busy lately so I'm late checking in on this one. My son also refused to put his face in the water until we got a swim mask. He immediately learned to swim!
Of course, our new problem is getting the mask off of him now years later! But at least he knows how to swim well enough to go snorkeling (where it is acceptable for a teen to be wearing a mask!).

[BeckyScott]

You can make me class president, but don't make me the treasurer. The money will turn up missing, and I'll be in Florida. :lmao:

I'll start a new thread.

[mechurchlady]

You can make me class president, but don't make me the treasurer. The money will turn up missing, and I'll be in Florida. :lmao:

I'll start a new thread.
You are too honest and I would move to Florida if I was treasurer.

As for the kid with the swim mask, lol, what about when a 45-year-old man is swimming in the pool with a mask on.:lmao: Just say he has a "medical condition that requires him to use a swim mask" and they will think he has an eye problem.l:confused3 :rotfl: I read that one should never diver head fist into cold water as it shocks the system. He may actually be reacting to water on his face as I know water on the face can do something but phooey my brain forgets again.

[bouncycat]

OMG, this is just amazing, I thought I was the only one going thru this...and having a hard time dealing with this, etc. VERY glad to hear i'm not. I've read SOOOOO Many things that sound JUST LIKE my ds!! He's LOVED by adults, but not kids, no friends, etc. it's hard on him, cause he does ask me whats wrong with him, and why kids don't like him. How do I answer that? he's SUCH a special little guy, like ALL kids are, and he's very in tune to my feelings and such, it's just amazing some of the things he does. BUT, put a pencil in his hand, and MAN, the fights start. He HATES to write!! His teachers' assistant now isn't giving him excuses on the writing, and he's doing pretty well. IF he concentrates, he can write as good as a first grader, and he's in 4th grade. This year, he had to do a science project, he came up with the idea, did the experiment and everything, now it's time to put it on the backboard, and he's lost interest....what happened there? I guess the fun is over??!! Ah well...just another adventure. Enjoy all...keep the comments coming!!

[Minnie M6]

I talked to a Mom who told me that it is possible to get the school to allow the child to type the majority of their assignments if there is an issue with handwriting. I may look into this for DS. I'm still thinking we will not be involving the school in the diagnosis process at this point, but it may not hurt to ask since he is having such a hard time with his handwriting (and the poor teacher has to try and decipher his writing!) I don't want him to hate school and/ or feel bad about himself.

[koolaidmoms]

I talked to a Mom who told me that it is possible to get the school to allow the child to type the majority of their assignments if there is an issue with handwriting. I may look into this for DS. I'm still thinking we will not be involving the school in the diagnosis process at this point, but it may not hurt to ask since he is having such a hard time with his handwriting (and the poor teacher has to try and decipher his writing!) I don't want him to hate school and/ or feel bad about himself.

We are going to CSE in a few weeks to get assisted technology added to DS's IEP. We want him to use the computer and possibly an AlphaSmart to type on. He's in K but is typing his book reports at home. We felt they were penalizing him at school because he can do 2 digit addition in his head and tell you the answer but because he can not write it down he has to do the 1+1 = ? Yes, we need to work on handwriting but let's challenge the kid too with where his intellectual ability is.

[DisDreaminMom]

My son threw a playdough knife at his Pre-K teacher after one too many rounds of them forcing him to trace his name over and over. He just couldn't take it. I swear writing makes his brain scamble- and I have seen some of the worst tantrums, no- rages, from being forced to process writing. Reading isn't a problem, in general. The teachers at his old school wanted me to practice with him at home but it was such a stressor for him that I stopped for about a year, and now he's much less troubled by it.

He is finally stopping flipping and transposing letters most of the time (he's in 1st grade), but he still hates to write. It looks like cats were trying to climb a wall, his handwriting is so terrible. Written homework can take three times as long as necessary because DS hates to write.

I never let him on my home computer because I thought it would be too frustrating for him, but they have a lot of computer time at his school. He recently asked me (I never thought he had any interest at all) if he could use my computer. Interestingly, he can Google about anything, use Google Earth to zoom in on most European cities, and find kids websites like PBS kids, nick jr. etc. And he's fast on that keyboard! I can see where these kids are much more at home in a tech world than my dinosaur one. I swore I'd never get my kids video games, but I wonder if they wouldn't help him more than hurt him (like a Wii or something, no violence).

What do you do to bok choy to make a small child miss it so? Do tell...:lmao:

[bookwormde]

Bouncy Cat,

Assistive technology services should be able to supply him with a keyboarding system, which might help a lot. Even teachers now recognize that writing, while a needed skill, no longer has the level of import that it used to. Very quickly our children learn that if they show interest or excitement about a subject and the outcome of this is having to do something which is very uncomfortable and difficult at the end that they simply avoid the whole thing.

DisdreamMom

It sound like the Pre-K teacher has either very dated or very limited training in the Autism Spectrum (forcing thing like this is essentially abuse). Has he had OT for fine motor skills and strength building, an evaluation and services can often help a lot with what you describe. Again Assitive technology should be able to supply him with a computer keyboarding system (like Alpha smart), which he is allowed to bring home. I said the same thing about video games (I was afraid we would “loose him into them”) but we finally bought a Wii this year because of the potential for additional physical exercise, although he has not been using much.

bookwormde

[BeckyScott]

koolaidmoms- we have a problem with youngest DS and the "doing math in your head" thing too. Since he's a few years older than your DS I'll tell you what happened to us. In kg-1st-2nd grade he didn't like to show his work because he was doing it in his head no problem. I had several discussions with teachers about that. And basically, wanted them to lay off, because the truth is, we have no idea how he's processing that stuff, and I suspected however he's doing it wasn't the same way they were teaching it. Then somewhere around the middle of 2nd grade, they started doing problems where they were carrying or borrowing, and DS was lost. He just didn't "get" it, and now since he hadn't been showing his work, we were starting from scratch. The way I figured it was, while he could memorize basic facts really well, there would come a point (unless he was totally math savant) where he would have to start figuring the problems out on paper at least a little bit. If he somehow could still carry or borrow without writing it down, then maybe it would start when he got to fractions. Or even if it took all the way to algebra, at some point he wasn't going to be able to completely process it in his head. What I told him was, that even though he might not figure out the problems that way, he was going to have to write it down that way for the teacher to count it right.

His handwriting is awful too. He has keyboarding on his IEP, the school recognizes that he will probably need to switch to typing papers in the future. But for now they're just putting up with the messy writing.

[mechurchlady]

9 semesters of A in high school math but boy was I shocked when in college I got a D because I was supposedly cheating because I would sit there and solve the math problems in my head. Why should I have to set there writing the equivalent to an essay on how I got where I got.

I am being flooded with the memories of school and what nightmares. I always blamed my changing hands as the reason for my poor penmanship but it was not. Talk about nightmares they used to make left handed kids do everything right handed. For years I had a notch in my finger from holding pens so tight.

Sending hugs and chocolates to everyone and for Becky some coffee.:surfweb:

[Earstou]

The reason we finally gave in to a game system was because of the social interaction at school. My ds was begging us for a system and when we said no, he broke down crying, telling us he couldn't talk to the other boys at school. He said they all talked about their games, and he couldn't join in because he didn't know anything about it.
We realized this was another area where he was different from the other kids, so we broke down and helped him buy one.
He got VERY good at racing games, and became known at school as the expert! I was delighted when, as a freshman in hs, older kids were asking advice from him!

[koolaidmoms]

koolaidmoms- we have a problem with youngest DS and the "doing math in your head" thing too. Since he's a few years older than your DS I'll tell you what happened to us. In kg-1st-2nd grade he didn't like to show his work because he was doing it in his head no problem. I had several discussions with teachers about that. And basically, wanted them to lay off, because the truth is, we have no idea how he's processing that stuff, and I suspected however he's doing it wasn't the same way they were teaching it. Then somewhere around the middle of 2nd grade, they started doing problems where they were carrying or borrowing, and DS was lost. He just didn't "get" it, and now since he hadn't been showing his work, we were starting from scratch. The way I figured it was, while he could memorize basic facts really well, there would come a point (unless he was totally math savant) where he would have to start figuring the problems out on paper at least a little bit. If he somehow could still carry or borrow without writing it down, then maybe it would start when he got to fractions. Or even if it took all the way to algebra, at some point he wasn't going to be able to completely process it in his head. What I told him was, that even though he might not figure out the problems that way, he was going to have to write it down that way for the teacher to count it right.

His handwriting is awful too. He has keyboarding on his IEP, the school recognizes that he will probably need to switch to typing papers in the future. But for now they're just putting up with the messy writing.

This is why I really want DS to start learning carrying or borrowing now. He understands the facts but to hold him and just keep repeating them in kindergarten because he can not write it down "properly" to me is holding him back. I don't care if he has to make little hash marks for each number but to say that he isn't forming his numbers correctly so he can't go on in math to me isn't right.

We do both typing and writing for book reports - he is only in K. We have him write two or three sentances but if he is typing he has to do much more than that (he is capable). The Developmental Pediatrician when I asked him about handwriting asked me, "Why does he have to learn to write properly other than to sign his name?" Well, because you are supposed to. He told me to start him on keyboarding now that there was no reason to force him to write as society is slowly making the transition to a non- handwritten society anyways. I don't totally agree with this but it has made me relax a great deal on the handwriting issue. Now, if I could get the school to get the same idea that the actual act of writing has become the primary focus not the critical thinking component and they need to switch it around so the critical thinking is the primary component and the physical act of writing the secondary piece.

[DisDreaminMom]

Bookworm, the Pre-K where DS was enrolled was in FL. He had OT, but it was the OT that made teacher make him do the tracing. And I completely agree with you- I thought it was abuse. When they started this it was the beginning of his off/on stuttering problem. He's still in OT now, in school in KY and they are much better at dealing with ASD. The training is like Dark Ages versus 22nd Century. It's a shame for all those FL kids.

By the way, DS suddenly began stuttering very badly in early December (I think I posted it), and I just so happened to have a WDW trip planned for the last week of school before X-mas. I thought maybe it would give him time to relax and get out of it. Low and behold, miracle of miracles, it worked. DS has not had a problem since second day of trip. We will see how long it takes him to start again. Even his Special Ed teacher called me to tell me how surprised she was that I was right (I forecasted this would happen).

[bookwormde]

DisDreamMom, It still amazes me that so many clinicians and educators still do not realize that anxiety is the primary contributing trigger to almost all manifestations and a big part of behavioral issues.

We had a great private OT for our son who worked on balance, coordination and strength and for his hands did a lot of work with fun things digging items out of a big box of rice, games which worked on fine manipulative skills and worked on grip and overall arm movement. We also used “theraputty” which was good for strength and a relatively innocuous vehicle for anxiety relief.

bookwormde

[DisDreaminMom]

The school DS is in currently has all these therapies in place. Last year when he first got there, they let him have a code word in case he felt himself getting upset, and the would let him walk out of the regular classroom and into the Special Ed room to dig in sand, use putty, etc. The Kindergarten teacher went as far as bringing a tent for DS (and him alone) to sit in if he felt like he couldn't handle things inside the classroom. This year, he hasn't had to use that as much, though the stuttering indicated to me that something was stressing DS (though at this point I think it's social interaction with kids his age, but that's my theory only). The level of schoolwork has jumped dramatically, though DS is getting most of it. He loves going to school. it's his favorite thing to do, so they must be doing something right. All the teachers just adore my son and he has them wrapped around his finger. If they could just get rid of most of the other children...:confused3