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-   -   He doesn't fit any of the disorders, but boy is he not 'normal'! (5 yo) (

Holiztic 07-24-2012 05:19 PM

It has been a very long time since I posted in here, MDC and PtGC.  My son is 5 and has never been tested or in a school situation, I have no idea what his IQ is, and do not know if he is gifted, or if so, how gifted.  I do know everyone who meets him comments on how smart he is, and he was obviously 'ahead' at 2 (when he started doing mental addition and subtraction without counting) or when he was speaking very long, grammatically correct sentences with proper tense, conjunctions, adverbs, etc.  He was able to skip (alternating arms) while whistling a proper tune at 3.5. But he's 5 now and not really reading (though he knows most of the rules and sounds and *can* spell CVC and silent E words, as well as things like "limit" and other very phonemic words, he generally chooses not to try to read.  I am totally fine with that at 5, and do not in the slightest push. His math skills are around 1st grade, I think, like if he has crackers in his hand (not laid out) he might say "Mommy, what is 2 and 2 and 2 and 2, oh, right, what is 4 and 4, oh, I have 8 crackers".  Nothing indicative of major mathematical giftedness, but he hasn't had much exposure nor any form of lesson (he's screen-free, no workbooks, no leap pads, etc).  He uses words like "shifts" (instead of 'moves') when appropriate but also speaks casually, too (doesn't fit the asperger's type of speech).   


I have been on and off researching various disorders to see if any fit him and cannot find one that does,  Here are some of his challenges:


He seems to need to control or at least understand EVERYTHING.  He wants me to 'pause' the radio (even when it is my station and a song he doesn't seem to care about) when I make a phone call so he doesn't miss anything.  He asks what EVERY song is about, picking out specific lines sometimes (again, my songs, not fun kid songs).  He MUST be involved in every conversation going on around him, even boring adult ones that have nothing to do with him.  He often reacts when we arrive at playdates or new venues with a grimace on his face, negative words--clear and strong dislike and even mild anger (never rage).  It has taken me a long time to figure out, but I think it is about things not being HIS way or under his control--i.e. too many variables.  He does not like babies or toddlers (except one precocious one who idolizes my son) and is very vocal about it.  


We met some friends at a shallow-entry river 'beach' today and he spent the entire time in the parking lot--refused to get his (water-sandal) shoes 'dirty' on the sand/pebbles.  He takes off his shirt if it gets even a tiny drip of, well, anything, even water, but at a meal he will wipe his hands (with food on them) on his hair! LOL. He is neither a neatnic nor overly sloppy, but latches onto a particular concern and does not budge a millimeter for months, then moves on to another. 


He still uses his body a lot, like to get my attention, hits (lightly, more as a gesture) when angry, but not so much with other people anymore.  His aggression is way more in facial expressions and words now. When he is unhappy (and he gets unhappy more than any kid I know) he makes it known--not through rage, aggression, etc like a toddler, but through incessant whining and loud complaining--especially bad when he is hungry, tired or sick, but pretty constant otherwise--and very exasperating and annoying to anyone around him.  


The other kids his age seem so laid back and calm to me compared to my son.  


Oh, and he annoys other kids like mad, doesn't really seem to even notice them--just barrels over them or ignores them, but is amazing with an attention-giving adult--plenty of eye contact, back-and-forth conversation, though he still likes to control most of the play.


He does not seem to be at all, what is the word, I would say 'afraid' but that is not right... anyway...of adults. He doesn't seem to even recognize authority (as opposed to simply not 'respecting' authority). He is not intimidated by anyone, any rules, etc. He will walk into a building for the first time, filled with adults, and just start opening doors, going behind counters, just because he wants to.  The thing I see in other 5 year olds' faces when they talk to me, I have never seen in his face when he talks to other adults. We are strong and firm, but gentle, parents. Plenty of boundaries and expectations, but not disciplinarian. I really think this is a temperament thing--that will one day help him tear down metaphorical walls of some sort. But it is very hard to parent a kid that does not recognize any form of authority! 


He has an incredible attention span if something is his idea and he is interested, but also needs to move A LOT. He speaks all day long, rather loudly most of the time, and wants everyone to hear him. He wants me to tell him stories anywhere, anytime, all day long! 


And every once in a while he is this calm, quiet, patient, thoughtful child that is sooo easy going--then it's gone again!


I read Misdiagnosis and Dual-Diagnosis... and he did not fit the disorder diagnoses, in my mind, though I think he has some mild anxiety.  I convince myself he's just a really intense, probably moderately gifted kid who likes to be in control and someday those qualities will be amazing.  But he has a rough day, or week, and I start trying to diagnose again.  


Can anyone offer me any thoughts?  

Tigerle 07-25-2012 02:00 AM

While DS is not exactly like this, he seems different in a similar degree from his agemates.

last year, when his issues came to a head, we did have him evaluated for autism, but he scored far off the cutoffs, and now we are sure that autism (or Asperger's) is not a diagnosis that will ever fit him.

He definitely has anxiety and executive function issues and issues with physical boundaries. Maybe we will end up with an ADHD diagnosis and some point but I don't think so. It's not that clear cut. I do not think we will ever end up with a "this is it!" light bulb moment. We hvae adressed specific usses as they came up. I have a hunch we may have to deal with the anxiety and control issues at some point in the future.

he is starting formal school this fall (early entrance into 1st grade) and we will see how that goes. if I ever have him evaluated again, I will start with an IQ test at a gifted center and go from there, because I am sure gifted intensity is the biggest issue here.

Cherry_Blossom 07-25-2012 10:24 AM

Holiztic, he sounds like a fantastic person!  :)  Sounds like maybe mild sensory issues and he's definitely smart.  What I hope is that you can find him some intellectual peers.  That's really important, because highly gifted kids can feel extremely isolated. 


And here's to smashing down metaphorical boundaries!  tiphat.gif 

Holiztic 07-25-2012 11:26 AM

Thank you both, both responses help to assure me that my child is not destined to annoy everyone for the rest of his life, a fear I have a hard time getting away from!  


We are homeschoolers and I am part of a very close and supremely supportive circle of like-minded moms whom I see (moms only) several times a month and whose children make up his main social group (well, not really, but on paper).  Unfortunately the kids are mostly under 4. : (  He has learned a lot from being in this group, he is starting to treat little ones better and enjoys talking to the moms (and they are very happy to talk to him), but he is the oldest at most events, which goes even beyond the issue of being with children whom are not at his intellectual level. : (  A 6 year old (who goes to school) was at the playground today and after a half hour of just standing behind me talking to me and asking each mom for some of their kid's snack, when the 6 year old arrived my son took off.  I think he is mildly annoying to even that boy and doesn't play quite like another 6.5 year old would, my son is barely 5, but they still seemed to have a good time. 


At this point, he really isn't even interested in kids--goes straight for the adults or toys, or just wants to talk to/play with me.  Even around older and other bright kids.  I don't know how much of this is 'him' and how much is him having given up long ago.  At 2 and 3, when the other toddlers were doing parallel play, he want to engage them, play pretend--try to keep up with the big kids in tag.  He always gravitated toward older kids on the playground, but was slower than them (tag, etc), did not get their jokes, super-hero references, etc., and eventually started to annoy them.  But he really doesn't seem to even care about other kids anymore, unless they have a cool toy (like a kid with a light saber today).  It is not like he seems to want to engage but instead clings to me, unsure. He at least 'acts' totally uninterested or even resolutely against playing with other kids, more often than not, at least. We do have homeschool neighbors with two boys--9 and 11.  Both very much like my son, in intelligence, and (when they were his age) behavior, temperament, etc.  My son LOVES to go to their yard but is still more interested in the balls, bikes, etc. then really engaging with the boys, though that depends on the day. He sometimes plays and explores intently with them, but they are much older, of course. 


He does love the homeschool center we used to go to, there were older kids there, some definitely gifted. It's not like he sat and talked math with them, you know? And he often did still just play with toys by himself. But he was happier there, and in their presence, and generally handled himself better.  I did not love it there, but not for any major reasons, we might have to go back more regularly. 


Thanks for the input.

Love to hear more from anyone with thoughts, advice, experience. 

webjefita 07-26-2012 10:18 AM

Is he a firstborn or only child? I'm just curious, because I have been noticing that a lot of firsts and onlies have these similarities. My oldest (now 9) had a *lot* of similar quirks and was not very flexible early on, and he is growing out of a lot of them, because I have been working steadily with him and also because he has had to learn to share over the years with his siblings. His first three years of life he had no siblings, no cousins, only occasional playdates, and two pretty anxious parents. I've had to find my "calm center" in order to learn how to help him find his.

Tigerle 07-27-2012 01:49 AM

For a long time, DS seemed interested much more in objects than in children. Sometimes he just wasn't interested, sometimes he seemed actually afraid, pulling me away to play somewhere else. Or he tried to interest them in whatever he was obsessing about at the time, shouting right in their faces if they didn't get it etc. From about 4.5, this has gotten better. He now is well integrated in preschool, has friends, has occasional playdates (no way are we taking part in the social playdate whirl of preschool, but he dos not appear to need it, either) and can, most of the time, relinquish control enough for the play to be mostly successful. In comparison with DD, who is very different, I now feel confirmed in my suspicion that he has been actually somewhat socially delayed (honestly, probably still is). However, apart from some OT and occasional social stories, we have not seen the need to adress it with formal therapy, because the progress with maturity, even if visibly slower than that of other kids, was obvious.

I am obviously coming from a different perspective here because I live in a country with compulsory brick-and-mortar-schooling and universal (not compulsory) pre-school, but while preschool was sometimes hard on us and we have had issues with the teachers, i feel it was absolutely necessary for him. I could not have provided the social interaction to have him "practicing" social relationships with children the way preschool has. After two occasionally rough years, he has had a very good K year (pull-out program in preschool where I live, formal schoooling starts with 1st grade only), enjoying the more structured activities offered, finding friends etc. One of his favorite activities now is reading to younger children in the book corner  - they enjoy it, he enjoys it and the teachers, instead of considering it weird or showing off or a sign of hothousing parents, just enjoy him for this talent. It's not ideal, but I like that as of now, he is getting positive feedback for being advanced.

We are now hoping for formal school to work well, too (Catholic school with Montessori leanings, but not "real" Montessori). he desperately needs the intellectual stimulation (even the K pull-out was strictly play-based, no formal reading or maths instruction, just playing around with shapes etc). He IS different, but as long as it works for him we will watch and wait. In a way, knowing we absolutley have to deal with the compulsory formal environment of school at least gives us a framework to work in - it must be harder as a homeschooler to assess what's going to be a real problem and what isn't.

beanma 08-01-2012 08:09 PM

I can see some similarities in my dd1's personality. I do see some things in your description that point to sensory issues and maybe some anxiety issues. My dd1 has some fairly strong anxious tendencies and when she was little I often thought she had some sensory stuff going on, although, probably avoidance rather than sensory-seeking for the most part. Like Tigerle I really think she has benefited greatly from school. It hasn't always been easy for her, but I think she's been able to stretch and grow in ways at school that she wouldn't be able to with me if we homeschooled. We have very good friends (like go on vacation together good friends) who homeschool and it would be feasible for me to do and we'd have a ready network to plug into, but I really don't think it would help dd1. I think it would end up being an avoidance behavior and make her anxiety worse. Interestingly enough I recently overheard a conversation between dd2 and dd1 about homeschooling vs school and they both decided they'd rather go to school.


A book I really liked when dd1 was younger (she's 11 now) is "Kids, Parents, and Power Struggles" by Mary Sheedy Kurcinka. Don't love the title, though—it's not really so much about power struggles as it is about personalities and temperament. She's also the author of "Your Spirited Child". KPP is the first book I was able to find my quirky child in I think because it's not a one-size fits all book. It's more of a "we're all different and what works for you or another child may not work for your child" kinda book.

MomofSev 08-02-2012 08:16 AM

Most of what you have said is exactly like my own 5 year old boy. I do not believe my son to be ADHD, which I think is overdiagnosed. I do believe my child has OE (overexcitabilities) in psyhomotor and imaginative. He will be starting Kindergarten this fall (per his request and my husband's strong feelings towards. I was originally homeschooling and wanted to at least through most of elementary.) 


Although my son is extremely gregarious. He will play with any kid, preference towards older children or adults (much to THEIR dismay.) He constantly needs social interaction and activities. I'm introverted, so this poses an issue for me at times. 

ellemenope 08-26-2012 11:25 AM

I can totally relate to the title of this thread, OP.  Except that behavior wise, my DD(4) is the "calm, quiet, patient, thoughtful child that is sooo easy going."  She never questions authority, never tantrums, never hits.  She is intimidated by everything.  She never wants to be the center of attention.  When she is unhappy she bottles it up.  She has said that she hates her life, yet, she never acts out.  It is frustrating because all anyone ever sees is a a quiet, well behaved girl.  Nobody sees the underlying anxiety.  And, it is hard for me to complain because in a lot of ways she is so easy.  But, I worry about it, because it is just not normal.  She is too reasonable.  She is too compliant.  And, I have learned recently that that can be a sign of ASD.  Of course, I don't want to borrow any trouble.  But, that is in the back of my mind.  It is just so hard to tell with her.

AAK 08-26-2012 08:38 PM

Originally Posted by EarthRootsStarSoul View Post

Holiztic, he sounds like a fantastic person!  :)  Sounds like maybe mild sensory issues and he's definitely smart.  What I hope is that you can find him some intellectual peers.  That's really important, because highly gifted kids can feel extremely isolated. 


And here's to smashing down metaphorical boundaries!  tiphat.gif 

This was my first thought too.  If you are worried about the potential sensory issues, get an OT eval done.  They are pretty fun for the kid and can be reassuring for the parent.  Or, if they find something that could be worked on, it is nice to do it while the child is young.  Sensory stuff can work itself out, but it sometimes doesn't.  Younger kids respond better to the "therapy"-- I put therapy in quotes because it will most likely resemble play.



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