How many of our children also have special needs?

[Thing1Thing2]

Hello - I'm not new to this forum. I posted a thread a couple of months back about complex sentences for toddlers.

http://www.mothering.com/community/forum/thread/1266065/what-exactly-is-a-complex-sentence-for-a-toddler

DS is still way ahead of his peers in language and puzzle skills. He amazes me every day.

But on the other hand, he has many sensory issues. A couple of days ago, I brought him to the pediatrician - and I had no idea that she was going to suspect that he is on the autism spectrum. I have a call in with an OT and a neurologist - but in the meantime, I have spent alot of time in the special needs section of mothering.

I came back here, because I was getting depressed thinking about all the problems my child may be diagnosed with. I needed a fresh take on it. And Im wondering how many on here also have special needs? It will be nice to gain a little perspective.

[FarmerBeth]

I have an 11 year old son that is gifted in math and conceptual language/logic. He also started a small baking business a year ago, and plans on expanding into culinary herbs.  He also has an informal diagnosis of Asperger's and a formal diagnosis of ADHD, tics, and sensory integration disorder and anxiety.  I just wanted to say that the great thing is that your son is being screened for these issues now, instead of when he is older and social life becomes more complex.  All those wonderful things you love about your son and all the things he is great at will still be there no matter what diagnosis he gets.  My DD, the middle child, is typically gifted, with no deficits, great social skills and an excellent athlete.  And yet, she has never wowed me with the completely outside the box observations and questions that my oldest DS has made (how a banana naturally splits into threes, whether the bend in space caused by a large object thus creating gravity also changes time, does it make sense for a robot to imitate life, how the rooster makes a different crow when he finds food, how many times the fan in church spins in a minute).  I think some of these abilities are just as much because of his deficits as despite them.  All people are a complex network of strengths, weaknesses, desires, dislikes and interests.  Diagnostic labels, and gifted labels, are simply tools that can help us as parents, and the larger community of educators and professionals, help our children be their best.

[whatsnextmom]

My DS isn't really special needs... just lots of quirks that were the most extreme in the toddler/preschool years. He has tons of sensory issues... had to have on the tags cut out of his clothing, sock seems lined up, shorts used to freak him out, very particular about shoes, sheets ect. He has an over-active gag reflex which makes eating complicated. He was also very math and puzzle oriented as a tot but no one would have said he was on the autism spectrum. He is also mildly dyslexic and while could read pretty much any individual word at 3, struggled to get through a whole book until about 7. He's also dysgraphic and has lots of penmanship issues. He had some speech issues "d" instead of "th",and the like. None of his issues (except the gag reflex) is very severe and all manageable individually but all together, it made for a very complicated start to life. OT really helped. At 10 though, we have a pretty good handle on it but certainly DS has a lot of little challenges in his life.

Don't get ahead of yourself. He could be on the spectrum but lots of people are and lead happy, independant lives. He could just be quirky like my son and outgrrow/learn to cope with the challenges. The label doesn't change who you know your child to be. It's just a way of finding the appropriate help when you need it.

[crunchy_mommy]

I replied to your thread in SN but I thought I'd share a little something here too... At first I thought DS was 'gifted'... when he was 14-18mos or so... now (27mos) I think he is possibly 'SN' and it's really hard to separate which is which, because if he is truly SN he is not typical and if he is gifted he is also not typically gifted so it's really confusing what we're looking at here!! Not that there is such a thing as typical in either category but he just doesn't quite fit any picture perfectly. He is definitely high-needs and has some sensory issues as well as possibly social/emotional delays...

I thought he was verbally advanced but then I stumbled upon a description of delayed echolalia and realized a ton of DS's speech is echolalic (both immediate & delayed). So while he can say something like, "Actually, I think that's a mail truck," or, "When it's dark out you might go outside and find a opossum," it's not his own utterance but he's reciting something he heard or combining several phrases repetitively and with the same intonation as the original speaker and it's not particularly meaningful or communicative. But sometimes it IS meaningful or he starts to replace words to make it meaningful. He'll go on & on reciting a book, but he can also paraphrase the same book... but I have had to actually teach him repeatedly how to ask DH for a snack, for example, even though he has had all the words & sentences for a while. When he's creating original or expressive sentences they are much more likely to contain grammatical errors or even caveman speech sometimes... sometimes I'm not sure whether something is echolalia or an original expression and it's all very confusing, especially because of his vocal tone and the way he tends to talk to the air rather than to whoever he's supposedly speaking to.

I'm not sure if that's really relevant to your OP but that's kind of where I'm at right now in trying to understand this kid. Obviously there's more to it than just his verbal development but that's what I've been focused on lately for some reason (I guess because I'm second-guessing everything I thought!)

Yesterday he found a pair of hand-me-down PJ's that he wanted to wear but he insisted that I "Cut the tag off" first... I don't think he's ever heard or seen anyone do that, so I thought it was pretty impressive that instead of crying about putting them on, or crying that the tag would bother him, he came up with a practical solution to it on his own and communicated it to me. I thought it was an interesting example of how his problems and critical thinking skills interact and I hope that it's a predictor that he'll be good at coping and compensating for his issues. Of course, he also could have overheard someone talking about cutting out tags and just repeated that to me.

I am rambling on, sorry, I guess just because I'm trying to work through & process some similar things to what you're dealing with! We have the second part of our EI eval Monday... It took me a long time to finally make the call -- he was so advanced in so many areas that I thought they'd do nothing to help us and laugh me right out the door...
Edited by crunchy_mommy - 5/12/11 at 6:13am

[Casha'sMommy]

I have two dc that, to some, seem to fall on the spectrum but are very much not autistic.

I highly recommend getting a copy of the Misdiagnosis and Dual Diagnosis of the Gifted. I found it very helpful.

I have to get some hs-ing done this morning but if I can manage to get back and post more l will.

GL!

[physmom]

You might find this interesting: http://www.google.com/url?sa=t&source=web&cd=1&ved=0CCEQFjAA&url=http%3A%2F%2Fwww.spdfoundation.net%2Fpdf%2FSensoryissuesinGiftedChildren.pdf&rct=j&q=sensory%20issues%20and%20giftedness&ei=FN_LTa33EMXEgQeM5_GCBg&usg=AFQjCNHUZwCP4KCTReHlZE7UOiIHfXlYDA&sig2=yfQj8WmQwPywregq6XdOtw&cad=rja I've often heard that around one third of gifted children have sensory issues and that seems pretty accurate to me, if not higher.

We plan on getting DD evaluated for sensory/anxiety issues in the near future (we have to go through private testing here so we're waiting to have enough $$).  I obviously can't say if she's really gifted or not because of her age but we do plan to have her tested once she's old enough.  I figure the more information we have on hand the better we'll be at making appropriate educational choices and meeting her needs. 

FWIW, DH really resisted looking into SPD for a long time and was quite depressed by the idea that DD was less than perfect (there's more to that, though, because we have some family members who have shut-down due 2E issues and it's affected all of us quite a bit).  Over time he's accepted it more and is now on board for testing and hopefully getting her some services that will help her.  I *think* he's realized now that while she may have this it doesn't change what a wonderful little kid she is and we just have to learn to adapt.  Plus, if we can do anything to HELP her it's much more valuable in the long run than ignoring what's going on. 

crunchy_mommy - I really can't speak to the echolalic speech but DD still does quite a bit of caveman talk (and this point she certainly denies any exist of the word "don't" although "no" is an acceptable replacement to that non-existent word and verbs are still optional ).   I guess, what keeps me coming here are both her math abilities and just the way she perceives the world.  There's so much that she gets that it just astounds me at times and that's really what got us looking into giftedness rather than her having advanced speech.  Maybe you could try to look past the caveman speech for awhile and see what thoughts he's trying to get across to get a better picture of your son? 

[Linda on the move]

I responded on your thread on the sn board as well. Both my kids are officially gifted, one is also on the autism spectrum. She's 14 and doing fabulously right now. She's applied for a volunteer position at the library this summer and her homeroom teacher and I had a long talk about what to put on the application, and decided NOT to mention the sn stuff, because in *some* situations, DD doesn't come across as having sn at all, and we believe that the library is most likely one of those situations.

We'll see how it goes.  It's been a heck of a rough ride to get here, but at this point, she's on target to graduate from high school at 18 and go to college.

[crunchy_mommy]

Originally Posted by physmom 

crunchy_mommy - I really can't speak to the echolalic speech but DD still does quite a bit of caveman talk (and this point she certainly denies any exist of the word "don't" although "no" is an acceptable replacement to that non-existent word and verbs are still optional ).   I guess, what keeps me coming here are both her math abilities and just the way she perceives the world.  There's so much that she gets that it just astounds me at times and that's really what got us looking into giftedness rather than her having advanced speech.  Maybe you could try to look past the caveman speech for awhile and see what thoughts he's trying to get across to get a better picture of your son? 

Well that's the thing, I can't seem to separate the two!!

OK so he may say something like, "Don't do that Daddy, I don't like that! I want to brush my own teeth!! It's my job!!" which on the surface sounds really expressive, grammatically correct, etc. But the tone of voice he uses is weird, and "It's my job" is one of his (many) repetitive phrases, and sometimes he will say that whole phrase while sitting in the living room with me rather than while DH is trying to brush his teeth.

His caveman talk seems the most authentic & most appropriate to the context, but he's not saying much with it. He'll say things like "Baby want cereal and coconut milk" (he calls himself "baby") or "That." to indicate he doesn't know/doesn't want to say what something is, or "Mommy do it," for similar purposes as "That."

His grammatically-correct talk is just weird but hilarious. He will tell long stories about something he did or whatever and it's just really amusing to hear. But he's not talking TO us necessarily and it can be very very repetitive and/or echolalic. And his voice is just funny when he speaks correctly.

I don't know, I'm probably making no sense...

[loraxc]

crunchymommy, my DD did quite a bit of semi-echolalia as a young toddler while also being very verbally advanced. Her speech was really quite idiosyncratic. She also reversed pronouns till just about 3. She was a major sensory seeker when younger as well. It's still there, but it's not NEARLY as noticeable. We wondered/worried about the spectrum for many years and still do sometimes, but she has friends and functions extremely well in school. She is clearly less neurotypical than her brother, possibly spectrumish, and needs some more support with social skills than many kids, but it isn't really a huge deal.

Both my kids also have low muscle tone (hypotonia, technically). It's mild, but it's there. DS's was much worse when he was a baby.

[earthmama369]

I have two kiddos who are gifted, one of whom also has sensory processing disorder and a (mostly resolved) articulation disorder. SPD runs in the family, as it turns out, and probably autism as well. I have two close family members who are older and have never been diagnosed, but both are off-the-charts intelligent with major "quirks" that make daily life pretty challenging for them.

It's been an interesting road, having two children who are a bit outside the norm, but in very different ways. Even being asynchronous in the same areas -- classic linguistic and math with both of them -- they approach both in different ways. They have different learning styles, different ways of expressing themselves, different social needs, different motivations and drives. In a way I think that's very good for me as a parent because I can't compare them to each other easily, which is an easy trap to fall into in this kind of situation.

I've done my share of freaking out and worrying over the past few years. But we've come to a pretty good place, I think, of meeting each need as it comes up and doing a lot of research on how best to help each child succeed without getting too caught up in the "pathologies" of their development.

[pranava]

I don't know if DS is technically special needs - maybe.  He has his first occupational therapy session this afternoon.  There's been no official diagnosis, but the evaluators said low muscle tone and motor planning problems.  He also has both sensory seeking and sensory avoidant issues.  I guess that means sensory processing disorder, but at just turned 2, I would like to consider it a sensory processing immaturity for now.  He may grow out of it with some extra help or he may not.  Only time will tell.  He is also very verbally advanced with lots of echolalia as well.  I've had others hint around that he may be on the spectrum, but I don't know.  He seems like a quick quirky normal to me.  I have always said he is High Needs, INTENSE with everything, fearless with a high pain threshold.  Add clumsy to that and we have a dangerous combination    He's not a "cut the tag out of my shirt" kid, but oatmeal on the hands or grass on bare feet are meltdown worthy.  But it's so odd because he's also sensory seeking - gnawing inedible objects, spinning, swinging, crashing.  Who knows!  Maybe the OT will help me sort this out.  Whatever he has or doesn't, I think he is awesome and quite possibly the most perfect kid I could have ever hoped for

[Doodlebugsmom]

My dd is 9.5 and definitely has what we refer to as "quirks." She has some sensory stuff, mostly related to food and loud noise. I remember the poor thing gagging as a toddler when she saw me eating oatmeal! She also has social anxiety, but is very social, kind and outgoing with her group of friends. It's bad when she is going to be around a group of kids whom she doesn't know. She used to have school-related anxiety, but she seems to have overcome that in the last couple of years. She's also a little emotionally immature, and has crazy outbursts at times (never at school, though).  She does some twitchy stuff with her face some, but my dh and one of his brothers do it too. She may have some Asperger's-like characteristics, but I'm not sure that any doctor would definitively diagnose her as "on the spectrum." I admit I could be totally wrong about that, though. I think many people think they'd love to have "gifted" children, but it definitely presents challenges at times. Dd is not an easy child to parent, but I love her to pieces and she's one of the nicest kids I know. 

[crunchy_mommy]

Originally Posted by pranava 

He's not a "cut the tag out of my shirt" kid, but oatmeal on the hands or grass on bare feet are meltdown worthy.  But it's so odd because he's also sensory seeking - gnawing inedible objects, spinning, swinging, crashing.

Yes, my DS too!! I kept ignoring the suggestions that he may have SPD because I was so confused how he could be both seeking & avoidant. He has the tag issue and issues with "strings" in his socks, he cannot tolerate loud noises (or even not-so-loud-noises) but he often makes them himself or seeks them out, he hates coats and socks but loves hats and shoes, he won't play on the playground but he loves to rough & tumble with me, he has a high need to chew & suck, LOVES super spicy foods and the taste of all foods, but has texture issues with onions & carrots, he can't stand to be touched but always wants to be in my arms... it's just all so intertwined & often seems counter-intuitive, like he's always contradicting himself... Fortunately for him, I seem to have many of the same issues he does, so I think I naturally create situations he's more comfortable in...

[pranava]

Oh, and a bit of perspective from the other side. . .  I was a quirky child as well.  Example - at age 7 or 8 I started clenching my teeth together just once quickly as the car moved over a shadow in the road.  The shadow of a mailbox post, a tree trunk, or whatever.  Once the front tires crossed the shadow I would bite down, and let up before the back tires crossed the shadow.  WEIRD!  My parents were not aware that I did this and in fact I've never told anyone.  I did it for 6 months or so and started to annoy myself with this behavior.  I eventually stopped, but who knows what a developmental specialist would have thought.  I'm sure that's not the only strange habit I had, just the one I was aware of and remember.

My point is, with time, help, and awareness quirky kids can live successful fulfilling lives.  Maybe some of the quirks fade, some we navigate around, and some make us interesting individuals!

[whatsnextmom]

It's actually very common that kids with sensitivities to be drawn to what they also want to avoid. I have to say, OT was just the best thing for us. I only regret we waited so long (he was 5 when we started.) It was just so wonderful to have someone who had real input in how we could handle this stuff.

Originally Posted by crunchy_mommy 

Originally Posted by pranava 

He's not a "cut the tag out of my shirt" kid, but oatmeal on the hands or grass on bare feet are meltdown worthy.  But it's so odd because he's also sensory seeking - gnawing inedible objects, spinning, swinging, crashing.

Yes, my DS too!! I kept ignoring the suggestions that he may have SPD because I was so confused how he could be both seeking & avoidant. He has the tag issue and issues with "strings" in his socks, he cannot tolerate loud noises (or even not-so-loud-noises) but he often makes them himself or seeks them out, he hates coats and socks but loves hats and shoes, he won't play on the playground but he loves to rough & tumble with me, he has a high need to chew & suck, LOVES super spicy foods and the taste of all foods, but has texture issues with onions & carrots, he can't stand to be touched but always wants to be in my arms... it's just all so intertwined & often seems counter-intuitive, like he's always contradicting himself... Fortunately for him, I seem to have many of the same issues he does, so I think I naturally create situations he's more comfortable in...

[Thing1Thing2]

Thanks for the replies, everyone. I feel I am in good company.

Still not sure if my DS will ever qualify as gifted, but I know for sure that he is adavanced -not only in language, but with puzzles and olving problems as well. Just like crunchy mama's LO, he does do quite a bit of echolalia (have never heard of that term before this). He will repeat movies and plots of books as he plays with his toys or as he sits bored in the car. Word for word every time. He memorizes songs and sings them - every verse and every note. But he also does have his own genuine way of communicating through advanced language - using his own words and phrases. And it is usually in context and with eye contact. He also has been known to correct bad grammar! He is socially adept as well, with a sense of humor, making jokes and being outgoing with new friends at the library or park.

Some of the things that were mentioned - sensitive gag reflex, cutting tags off of clothes, socks being aligned properly. He's got all of these "quirks". But also as mentioned, I have some of them too - so I completely understand where he's coming from.

Also wondering why some have low muscle tone? My DS actually has high muscle tone and it amazes me how much he can push or pick up. It seems he gets what he needs from picking up and pushing heavy things.

 The label doesn't change who you know your child to be. It's just a way of finding the appropriate help when you need it.

Thanks for the encouragement. I've been struggling with how I see DS now. I found some videos online with kids hand flapping and spinning. It looked so much like my DS, I cried. Now I don't see that behavior as my loveable son being himself, but more as a "spectrum" thing. I think I liked it better when I didn't know  

DS is up from his nap, wants to play!

[crunchy_mommy]

Originally Posted by BonnieNova 

Also wondering why some have low muscle tone? My DS actually has high muscle tone and it amazes me how much he can push or pick up. It seems he gets what he needs from picking up and pushing heavy things.

I would say the same of my DS. He is really strong and was very early with physical milestones (standing, walking, etc.)

Originally Posted by BonnieNova 

Thanks for the encouragement. I've been struggling with how I see DS now. I found some videos online with kids hand flapping and spinning. It looked so much like my DS, I cried. Now I don't see that behavior as my loveable son being himself, but more as a "spectrum" thing. I think I liked it better when I didn't know

I know what you mean. Of course I know my DS is the same kid but I'm suddenly seeing a lot of his little quirks in a whole new light. Things I thought were cute, advanced, or unique to him suddenly seem like just more symptoms of whatever is going on with him.

[joensally]

An internationally known gifted expert that we consulted is very firm that quirks and sensory issues are common, and argued with me a few times over whether DS has SPD or if it's just part of his giftedness. (http://www.sengifted.org/articles_social/Lind_OverexcitabilityAndTheGifted.shtml)     

Quote:

A small amount of definitive research and a great deal of naturalistic observation have led to the belief that intensity, sensitivity and overexcitability are primary characteristics of the highly gifted.

DD has OEs, DS has OEs and SPD.  DD has anxiety (mostly from being in an inappropriate learning environment and the OEs).  DS also has vision issues, written output disorder, some gross/fine motor stuff.  He's EG.  He has some ASD traits, but is not on the spectrum.  He has some pretty interesting scatter in some of his sub-test scores on IQ testing - which is normal among gifted people.  He's clearly pretty neurologically different in a number of ways.  Oh, and he's awesome. 

But to the posters with young kids - it will be okay :).  Your kids are so very young, nothing is set.  The range of developmentally normal in the preschool set is HUGE, and can be more complicated if a child is gifted.  It's great that you're pursuing evals and learning more about how your particular kid works, but don't fret too much - said as a mom who fretted/frets a lot!  Your kids may or may not end up complicated, may or may not end up with labels and diagnoses.  Entering diagnosis land was scary at first for me, but in the midst of it I still had this great kid to jouney along with.

This is a great read:

http://www.amazon.com/Look-Me-Eye-Life-Aspergers/dp/0307396185/ref=sr_1_1?ie=UTF8&qid=1305254779&sr=8-1

Robison self-diagnosed Asperger's as an adult, and he's had a great life - worked for KISS, runs his own specialty garage because he loves cars, on his second marriage (both successful), and raised a child.

Watch a little Big Bang Theory - these are a group of quirky, gifted guys who are doing pretty well.  At worst, they'll make you laugh:

http://www.youtube.com/watch?v=k0xgjUhEG3U&feature=related 

Books to read about kids, development and difference:

Webb et al, Misdiagnosis and Dual Diagnosis of Gifted Children and Adults

http://books.google.com/books?id=NQrtt-peg5AC&printsec=frontcover&dq=misdiagnosis+gifted&hl=en&ei=K53MTcuNB4q-sQOjm_TiCA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDAQ6AEwAA#v=onepage&q&f=false

Eides, The Mislabeled Child - also see their websites

When the Labels Don't Fit

http://books.google.com/books?id=NQrtt-peg5AC&printsec=frontcover&dq=misdiagnosis+gifted&hl=en&ei=K53MTcuNB4q-sQOjm_TiCA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDAQ6AEwAA#v=onepage&q&f=false

Sensational Kids

http://books.google.com/books?id=4IWJtCOkT0IC&printsec=frontcover&dq=sensational+kids&hl=en&src=bmrr&ei=up3MTbrzB4j4swPWleCDCQ&sa=X&oi=book_result&ct=book-thumbnail&resnum=1&ved=0CCoQ6wEwAA#v=onepage&q&f=false

[Roar]

Originally Posted by crunchy_mommy 


His caveman talk seems the most authentic & most appropriate to the context, but he's not saying much with it. He'll say things like "Baby want cereal and coconut milk" (he calls himself "baby") or "That." to indicate he doesn't know/doesn't want to say what something is, or "Mommy do it," for similar purposes as "That."

 

How old is he?   Have you modeled for him the correct way to say it and if so how does he respond to that?  Not saying you are doing this but it is very, very common for parents who are verbal and get in the habit of narrating before a child can respond. They may say things like "Mommy will do it" instead of "I will do it"

[Tigerle]

We're still not sure just how sn DS is, if at all. He is another one of those kids that appear to combine giftedness (in his case, with a strong visual spatial bias) with some ASD traits, particularly when under stress (sensory issues, mild hypotonia, tics, explosions, social awkwardness) but nothing severe enough to qualify for a diagnosis it appears. In developmental testing, he tested very badly in expressive and receptive language so something else we may need to explore.

I know what you mean. Of course I know my DS is the same kid but I'm suddenly seeing a lot of his little quirks in a whole new light. Things I thought were cute, advanced, or unique to him suddenly seem like just more symptoms of whatever is going on with him.

Sorry, don't seem to be able to multiquote! I just wanted to say this happened to me, too, and for me it was a phase I got over -  of course getting a definite negative on the ASD eval helped, and so did things just getting better.