My DS8 has Expressive and Receptive language processing disorder in addition to ADHD combined type. He tests in the 0.5th percentile for receptive language and the 12th percentile for expressive.

This is where it gets interesting. He's in French Immersion at school (against the advice of the school team... this is my decision). What's interesting is that he's actually learning the second language, but the specific issues he is having occur in both languages.

His grade one teacher (brilliant lady, I miss her) made a comment - this was before his diagnoses - "he might just have a problem with language in general." BINGO.

For example, he still confuses gender specific pronouns, again in both languages. He refers to his male friends as "she" sometimes, and to his sister and her friends as "he." Not always, but by eight all of that should be gone.

He also can't remember the order of the days of the week and the months of the year, in either language. He's eight! He understands the concept of "before" and "after" but he can't remember the sequence the days and months are in. Not true with numbers or letters individually (he gets quite insulted when you ask about those).

He still struggles with word pronunciation (both languages again, although somewhat less so in French because a) they do phonics drills and b) the vocab is not as advanced). For example the other day he was trying to say the word "management" and he kept saying "ma-je-ment." His sister (9) was trying to correct him and they were both getting so frustrated. I finally spelled it for him and had him read it and then he said it fine, but the minute I took the paper away and he lost his visual reference, he reverted to saying "ma-je-ment." I have a list of words he can't pronounce that is much longer than it should be for someone his age. Btw, CAPD has been ruled out.

He has a lot of trouble articulating what's on his mind. This I think is made worse by the fact that he's clever and his imagination is so vivid, and the gap between what he's thinking and seeing in his head Vs. what he can articulate verbally is so wide that he just gives up: "Oh, never mind! It's too hard to explain."

Anyway, I'm just wondering if there is anyone else whose child has similar issues and what you've done that's been successful. Originally I thought that removing him from French could be my last resort, "at least we can do that" type of strategy, but now I'm seeing that specific processing issues are persisting and I don't think an English only environment will make a difference. Fyi he's also had speech therapy through the school.

Any thoughts? Thanks in advance for your help

What sort of testing has been done? Any actual diagnosis?
Seems like a situation where a full eval might be in order, outside the school if they have nothing else to offer.

At 8, this sounds rather unusual, to me anyway.

He's had a full psycho-ed assessment, done independently, with an licensed psychologist. She spent about 6 1/2 hours with him, and wrote a 16(17? forget, have to check) page report. His official diagnoses are the ADHD and the language processing disorder (expressive and receptive).

She admitted he was hard to assess, and told us she could get only :45 per 2 hour session of compliance from him, because he was restless and inattentive. She advised us to medicate his ADHD and retest in two years.

(It's kind of a long, long story but no one has been able to figure him out).

Our pediatrician was very impressed with the psychologist's report, saying she "was very thorough" ...but then saying she didn't think medication would help because she's certain he doesn't have ADHD (she said she'd give us a prescription if we wanted but she doesn't know where to start). This is a very experienced pediatrician who sees lots of ADHD kids, and insists that our DS is not one of them.

Meanwhile she didn't really question the language processing disorder, and neither to I.

DS is very odd. Certain things he learns at the speed of light (math, English reading, to name a couple). English reading?? Yup, it's really strong... but in other areas (like the gender specific pronouns and the order of the days and months) he's totally stuck. It's like there are holes in his brain! I try repetition with him but that's a disaster and extremely stressful (none of us, DS8, DD9 & myself) can handle repetition.

Sometimes I think we need to see another psychologist (the one we used was well versed in giftedness, but not 2e), but then I think no, the language processing makes sense and he's just clever enough to compensate part of the time. The question is, how do I help him fill these "holes" that he has?

Oh... pffft. He just walked past me with his shorts on backwards. I said "your shorts are on backwards" and he looked at his shirt. sigh. And on it goes.

(Oh, and he's had FIVE normal hearing tests... 2 done at the local health unit, one done by an ENT surgeon's audiologist, and 2 done at our local hospital by audiologists). His ears are fine... he just has parts of his brain that are stuck, and other parts that scramble language.

In a hurry so can't reply at the moment, but fwiw our ds12 has alanguage disorder. In his case, his receptive language is ok but expressive is the challenge. I'll come back later and let you know what we've done. FWIW, the "holes in parts of the brain" sounds like a great way to describe what our ds experiences!

polarbear

ps - has your ds had any kind of speech therapy / worked with a speech language pathologist?

Oh, thank you He's had a little bit of speech therapy at school - one session per week - with a speech language pathologist. I'm hoping he qualifies again this year - I'm still waiting to find out.

I'm not a lot of help, but I know with my ds7 we help his verbal language skills by pairing them as often as we can with visual language. (In his case, he mostly learned to speak after he learned to read. We subtitle everything he watches, write out as many instructions as we can, etc.)

Does he still confuse before and after if you give him a written definition, etc?

No... he's fine if he sees it in writing. His reading is better than his speech (and he has strabismus, too... poor kid!) So if I show him something in writing, he totally gets it. However the minute I take away the writing... he's back to square one.

Another example comes to mind... he asked me what "HP" stands for. I said "Hewlett Packard" and what I got back from him was bizarre. "Hewa Poh-dar? Hee-da Powa?" etc etc. I finally wrote it down for him and he said "Oh!! Hewlett Packard!" It sounds like classic CAPD, but he sailed through those tests.

I asked the audiologist about his receptive language score and she questioned it, saying he had enough language development to pass the closure portion of the CAPD test (where they muffle the beginning and endings of words so they have to fill in the words using context).

In other words, he pulled the muffled words out of his head, but now as I type this... I wonder if he had those words to access from his reading, rather than receptive language. I wish I'd thought of that to ask the audiologist...

I wonder what's happening when you pull away the visual? I know with my ds7 he's still "seeing" that visual when he talks, because sometimes he does air writing to help himself figure out what he's saying. It's still frustrating for him, of course, because I feel like he's a nonnative English speaker who has to consult the ds7-to-English dictionary in his head every time he speaks a sentence longer than 5 words.

But I think it's noteworthy that your son loses that connection when he loses the visual. (Edit: If you don't mind me saying. I'm new here, so if I make mistakes on the protocol on these things I apologize. I feel like dh and I sometimes spend all our waking hours trying to decode what our kids are doing. I am stuck on "why does he do that? and what will make it better?" mode.

Yes... me too. I wonder if it's a working memory thing, because of the ADHD (I go back and forth with that... some days I think he definitely has it, and others, not so much).

But consider this... DS does mental math. He hates showing his work (I think his fine motor issues make it hard) and does things in his head. He recently got 8/16 on a math test - he got all 8 answers correct but he lost the second mark for each one because... no work. All in his head.

Not at all Any ideas we can bounce back and forth can only help

My ds8 occasionally gets misdiagnosed as ADD (w/o hyperactivity) because he is so internally focused he can't pay attention to things very long. Some days it would be nice if he were ADD, because then medication could help him focus better.

I think often times people who have sensory issues (that make them sensation seeking) + internal focus (that makes them distracted) get misdiagnosed as ADHD. Not an expert opinion, however.

The other thing is that I think very bright children can often cheat on those tests. My ds7 tested average on verbal language when he was 4 and just learning to speak because he would use his superior pattern recognition skills to anticipate the answer to the next question. DH and I let it go though, we were so excited that he'd tested average (after a year and a half of tears and frustration trying to get him to speak at all), that we left the center doing little singsongy dances. (Long rambling point being, maybe he did find a way to sort of "cheat" the CAPD test?)

Yes!!! Omgosh, that's my DS. Originally the school was pushing for an ASD diagnosis (since ruled out), and I was convinced he had SPD, primarily "seeking." That combined with his vivid, active imagination makes him seem on the moon sometimes.

Sometimes he'll walk around in circles in the living room, or up and down the hallway, with this intense look of concentration on his face. When you ask him about it he'll say "shh! I'm imagining!" It's like the dynamic going on inside his head lifts him off his seat and compels him to move.

I think you're right, too, about the test "cheating" (or rather "compensating" )

How was ASD ruled out?

My ds8 does the circles/pacing too. Every single day, up and down the hall.

I wouldn't be surprised at all, but I'm trying to figure out how he could have. Unless there's another piece to audio processing (some kind of synergetic, environmentally driven sensory response) that can't be duplicated in a sound proof booth? I don't know.

Congrats on your sons test results, btw

The psychologist, in her formal assessment. Plus his anxiety counselor and our pediatrician as well as our family doctor all threw in their 2 cents saying he didn't seem autistic.

The psychologist lists autism as one of her specialties, and she said not only is he NOT autistic, she can't imagine anyone seeing autism in him.


Aw... no way!! They're like kindred spirits Does he have trouble paying attention or sitting still in school?

There was, like, a tango-line to the car. It's the little things.

ASD is often misunderstood, even in people who work in the field, so I always recommend to people that they keep an open mind to potential ASD therapies and solutions, even if they don't believe that's the right dx for their child. They can help a broad range of kids. Both my boys are ASD (one mild and one moderate), and you're listing lots of similar qualities to them, from sensory problems to repetitive behaviors while lost in their minds to verbal language difficulties. Of course, there are a lot of coexisting spectrumy things in many kids, so take that for what it's worth.

As always with language or speech problems, consider an audiology exam to rule out hearing loss. The doctor's office test is very crude and frequently misses even major hearing loss.

My son also does the circles or pacing while he is thinking. I would say he spends at least an hour a day doing that. I wonder what that is about?

Not sure if it would be helpful, but the Eides who wrote the Dyslexic Advantage have this slideshow talking about trade-offs in gifted minds. http://www.slideshare.net/drseide/brains-on-fire-gifted-thinkers

Just strikes me that swapping in written instead of spoken and your descriptions sounds like dyslexia. Dunno, but maybe that slideshow can offer at least some abstract measures to look at it.

Yes... I fully agree I think a label guides you towards a set of therapies and solutions but in no way should restrict you.

It's just so interesting. Our district psychologist is so convinced DS is ASD that he recommended, if we believe the ADHD dx, that we medicate him diagnostically for six months and we'll see that the meds don't work, and that we have an incorrect diagnosis and it should be ASD. The problem that I have with this is that this doc hasn't spent any time with DS - he's basing his opinion on a screening report done by an intern who observed DS for a couple of hours in class. Meanwhile our psychologist who said he's not ASD spent over six hours with him, albeit in a totally different setting.

It's just so hard. No one can seem to agree. He was PLAGUED by sensory issues when he was younger and he seems to have outgrown most of them. In defense of the school psychologist, he really did seem much more spectrum-like when he was younger, but he's outgrown most of it.

He used to love to spin... helicopter spins... ohhhhh my. He'd crash right into people. (eeeesh!!!) sigh. Again, another behaviour that has disappeared with age, so I'm thinking it was sensory/vestibular seeking, I guess, and it was just developmental.

On another note, Have you read "Bright, not Broken?" Kennedy/Banks w/forward by Temple Grandin ? It's an interesting read. They discuss the similarities between ADHD and ASD, and the different ways that the disorders are viewed and treated. I haven't read the whole thing yet but am enjoying it so far.

It's funny because I asked DS's grade 1 teacher about dyslexia and she said it was too soon to tell, but OH MY you should have seen his writing. So many letter reversals... he even wrote a couple of sentences in complete mirror image (it was bizarre). It has gotten much better though.

He's had five tests... ALL in sound proof booths... three by audiologists... two of those at the hospital... all normal. I was thinking that hearing might be the issue, but... nope.

I have not. I did see her speak earlier this year, which was fun. She is full of useful information, and she is really a very engaging public speaker.

I find it a little odd that your psychologist said she didn't know why anyone would suggest that about him. That seems strange given the behaviors you described. Maybe he's not on the autistic spectrum, but making that suggestion when he has those behaviors is not an outlandish idea.

I think one of the difficulties with ASD diagnoses is the stigma attached to the word "autism." Especially with an obviously gifted child -- it's like we don't want to saddle the gifted child with the autism label unless he's stimming and rocking in the corner and refuses to make eye contact with anyone.

Even among professionals who should know better, there's a fear of labeling that seems to keep kids from getting diagnosed. At the end of ds7's first big formal evaluation every single professional in the room said "I don't think he's AUTISTIC, but..." Like they were saying "I don't want to say it's FATAL, but..." The autism specialist walked in the room and five minutes later she said, "yep, autism." Years later and he's obviously on the autistic spectrum, albeit with many traits that push the diagnoses in the PDD NOS category. (He's my more autistic child. My older, DS8, is much more borderline in his presentation.)

That said, I dont think there's necessarily a reason to label a kid unless it will help them. If their support system already uses all the same therapies and support, there's not always a point to labeling. But living in a household where autism is almost the norm, I find it irksome that it's still considered such a death sentence. It should be a diagnoses that helps point people toward the correct and most useful support strategies, nothing more.

Just looking at it now... thanks I've heard of the reciprocity of different cognitive functions before - it makes a lot of sense.

I'm at slide 48, and it says "Visual thinkers process words through picture areas"

Um, wow. DS is not particularly phonetic, and finds it easier to simply memorize words (i.e. take a picture? process the word in picture areas?) rather than sound them out. This means that longer, more complex words are easier for him to remember because there's more to "hold on" to. Whereas the smaller words (he, she, was, saw, we, etc) usually mess him up.

It is interesting, isn't it?

There's a cynical part of me that thinks the school wanted the ASD label for funding, because there is none for ADHD, and the psychologist gave the ADHD label because there's less stigma attached and therefor it's easier for parents to swallow. is it bad that I think that?

Or maybe I am being too cynical. Like my family doctor says, with issues like these that aren't diagnosable medically, it always comes down to opinion - it doesn't necessarily have to be political.

At the end of the day I don't care what the diagnosis is, as long as he gets the help he needs...

Always the most important part.

My middle kid had some similar characteristics to those described in the original post, though not everything matches. She mixed up words, mainly abstract types of things. I should have kept track of what she mixed up, but the most notable mix-up was hot and cold. Despite correcting her every time she mixed up, the hot-cold thing continued until she was at least six.

She had some speech issues - articulation - and went through speech therapy at age three and then again at age eight. At age two/three, she would often say only the second syllable of a two syllable word, or the third and fourth of a four syllable word. While I didn't really pay to much attention to them, elementary reading assessments seemed to put her at a lower level than her true level. She would substitute for some words and start/stop (not fluid) reading when asked to read out loud. I see my youngest do that too with both reading and speech, and one teacher called it stuttering (which it isn't - more of hesitation). Lexile level assessments for middle kid which did not involve reading out loud (ie MAP testing) yielded much better results.

At 14 (15 in a few weeks), she still will sometimes ask a definition of a word that she should know (but a word you seldom would use). Often these are words that her eight year old sister knows. I did ask a psychologist at an established local child study center (center has been there at least 50 years) and she did suggest possible reasons for the language issue. However the testing seemed expensive, and she was in middle school by that time, and no issues in school.

She had some sensory type issues as well such as tags on clothes and food texture. We never looked for any help with those. We tolerated them for a while, then as she got older, we just told her to "grow up".

She has always done well on aptitude and achievement tests, and shows very "even" scores across subtests, so no one ever mentioned possible language issues, though some stuff she did was a bit odd.

And just an interesting similarity to the OPs case, all three of my kids attended a French immersion school (youngest still there, just started 3rd grade). We think the immersion has helped all three of them, and we don't think any issues we have seen are related to foreign language immersion.

I'm glad you said that... I'm pretty sure it's not as well: as far as I know, my DS is the only one in the program with these issues (currently there are over 200 kids in the French side of the school).

It was kind of comical, actually, the way his two (job share) grade one teachers reacted at our meet the teacher night (the year before last...he's just started grade 3 now). I said to them: "so... is he really that different?" and they both tilted their heads in the same direction and simultaneously said "Yesss!" It kind of caught me off guard - I didn't realize until that moment how quirky he was.

Interesting. I see some of the same issues with DS6, diagnosed with an expressive language disorder last year, raised bilingual French (home) and English (community) and enrolled in a Spanish immersion program since K.

I can go in more details on his history through PM if you are interested, but what I learned is:

1) most ST who are not familiar with multilingual kids try to simplify the problem by asking families to go monolingual. The test instruments are not normed with bilingual kids, monolingual STs can't assess functioning across multiple language, it makes problem much too complicated for lost people. And there is very little litterature on the subject (although the little there is shows benefits to keeping the second language going it is usually in a context where the secondary language is the home language and the primary/target language is the community language).

2) the one ST we have talked with who deals with lots of multilingual kids told me that language disorders are problem with language acquisition mechanisms and not specific to a given language. So the same problem will show across all languages -- you were right about that.

3) there seems (no hard data there I could find) that learning multiple languages could help with some meta-cognition skills that could in turn help with the language issues.

4) kids learn how to compensate. The brighter, the better. There might be a cost (they can spend a lot of energy compensating).

I think it is great that you identified visual support as a potential helping mechanism.

Not bad, but not likely true. IDEA has never been fully funded, which means that special ed is a financial loss for schools-- the federal funding never actually reimburses schools for the services they provide to disabled students.


I think that has become less and less true over time. There is still some gray area, but there are standardized tests that do help to quantify even things like social behavior. The trick now appears to be to find the provider with enough expertise to use the right tests and read them correctly: there are lots of people who are not up to date. Has your child had the ADOS, which really does try to separate out and quantify who has autism and who doesn't? Quite useful.

It is true that someone who shows obviously autistic symptoms at a young age might not later-- often because someone worked really hard teaching them to fit in better. People do change as they grow. If there was an ASD, the typical path would be that the details change over time, but the social differences and difficulties remain, and those usually do include language difficulties.


Yep.

DeeDee

Yes please


This is something that had concerned me - that the testing material would be designed for monolingual kids and his results wouldn't be accurate because of that. In the end the doctor said the results were inaccurate because of his behaviour, which made sense as well.


Yes... I think this makes so much sense. In the info sessions for the program before the kids are in KG, they use this catch phrase: "How goes the first language, so goes the second."

On that note, I thought DS would be ok because... hmmm, where do I start... let's just say I have no experience with "typical" so I had to guess. There are a lot of odd milestones for both my kids, but for brevity's sake, here are just a couple:

DD(now 9) - mastered alphabet at 16 months (would scan and point on request) before she'd say a single word (24 months); was writing letters (26 months) before she was fully potty trained (28 months) ...so she was a little atypical (I stopped referring to the baby books when she was three and reading and writing full sentences)

DS(now 8) - alphabet mastery - not sure, but at 24 months (within a day of his second birthday) he started speaking (not a word before then) by handing me alphabet blocks and naming them. I'm thinking "aw, he does know them. He's a little late, but.." (??). At three he was sounding out three letter words.

He was definitely delayed compared to his sister, but still a bit ahead of the norm, so I felt safe with the language immersion idea.


I've heard this too. In fact our psychologist did her thesis on language immersion, and she mentioned meta-cognition benefits.

You know what's interesting? When he started KG, the teacher said that he seemed more comfortable in the French environment than the other kids. I am now wondering if that's because he was simply used to his brain "scrambling" language and the transition was easier for him than for the typical kids who were taken aback by the new sounds.


Yes He seems to sleep well at night, lol (as opposed to his sister, who is perpetually wired!)


I'm glad to have that ace up my sleeve. It would have been hard to miss, actually... from a very young age he seemed to be able to "think with his eyes" ...advanced puzzles, mazes, etc.

Interesting... there was no ADOS done. The assessment tools used are listed as follows:

Beery VMI-VI
WISC-IV
CLEF4
WJIII-NU
WRAML2
Conner's (version 5)
BASC-2
BRIEF

I'm wondering now... (I'm SO glad I stared this thread - you all are helping me so much, getting the wheels turning, thank you!! )

...I'm wondering if the tests she used were influenced by the anxiety counselor he saw before his assessment. Both at the same firm, so in direct, daily communication with each other.

Background: Our pediatrician (who is controversial but very savvy) originally said "he has no issues other than anxiety - I can't help you any further until he has anxiety counselling." Ohhhkay. So we started with the counselor (who specializes in child anxiety) at the psychologist's firm. She was wonderful (loved her!!) but human, and prone to her own experience colouring her objectivity. She said she saw very little anxiety in DS but that he reminder her very much of her own son, who has ADHD (worth noting is that she spent 4 hours, one on one, with DS). She was involved in setting up the assessment with the psychologist and no doubt shared her opinions, which may have influenced the tests the doc chose for the assessment.


I've often wondered about that - is life therapy? He's never had any ASD-specific treatment, just parenting (positive reinforcement, consequences, structure, etc etc).

He's been difficult to discipline: from a very early age (like, 3) he'd misbehave, laugh and then run to time out on his own, for example (it was a joke to him! He'd finish his time out, come out when it was over and repeat the offense that got him in trouble, laugh again and run back to time out) ...it was always like he was mocking and testing me, rather than not being reachable. (sigh) I tried taking his toys away and got a similar response (he'd bring me stuff).

A friend of mine, a TA, had interesting insight: she told me that he was possibly feeling over stimulated and was clever enough to create a situation where he could be sent to a quiet space to recover. I think this theory makes sense, but if you saw the gleam in his eye... I think it was more that he was making the connection between his behaviour and adult response / manipulation.

Later I had DS's sister's grade 2 teacher tell me that DD had the best adult manipulation skills she's ever seen (brought out in an attempt to control anxiety). I didn't make the connection with DS until he was in the pediatrician's office, where it was clear that he was using manipulative behaviour (which the ped. called right away... light bulb for me - his was so different than his sister's that I missed it).

Anyway, I've often wondered if ASD and ADHD (to name two of many) can actually be outgrown. DS has changed dramatically - even the teachers at school are commenting on this - gushing about how he's come so far - and yet the "language holes" in his brain persist. So now I'm left with the question: is this developmental as well, or an actual cognitive deficit that won't change or improve without targeted intervention?

If you search my back posts, I'm pretty sure I've posted several times the list of tests that was used in diagnosing my DS10. There is some overlap with your list, but significant differences too.


A lot of parenting is meant to modify behavior, as all ASD therapies are. Theoretically the therapies should be more targeted and efficient, but the aim is similar: to get the desired behaviors and eliminate the unwanted ones. Life experience also produces behavior change.

FWIW my DS was very difficult to discipline, too, somewhat in the way you describe. Time outs had no effect. I took a parenting course because I was sure it was my fault. Nothing they suggested worked on him either. Those years were tough. In his case it was definitely not manipulation per se; more like experimenting on his environment (humans included) to figure out what was going on.


ASD is permanent; that's part of its definition, a lifelong impairment. My understanding of ADHD is that that is also a wired-in brain difference with permanent implications. However-- brains do change over time. Human beings, especially young ones but really all of them, have a tendency to grow and learn. People with ASD and ADHD and all manner of other things learn coping strategies and skills for being in the world.

My DS at 10 still has autism and he always will. When he was in kindergarten his problems were freaking out and hiding behind the bookcases or fleeing at school and rambling on about the Latin names of clouds to other kindergartners, those sorts of things. He doesn't do those things any more. The problems look totally different, but they are still real: he has problems identifying when a peer is bullying him or just joking around, he gets anxious if he forgets to turn in his homework (and he often does). When he goes to college, it will look different still. I bet there will still be anxiety and social mistakes in his mix, but he will have grown and gathered some new strategies for managing it all.

At least, I'm counting on that.

ETA: I can't say from my armchair where your DS's language holes come from or how they should be approached, but anyone who knows me knows that I like to use every resource available to identify and work on problems. In your shoes, I'd look for the clearest answers and most appropriate therapies.

DeeDee

I'm back! There's been so much discussion on this post (great discussion!) - I may bounce around a bit to get in every thought that's crossed my mind on this -

First, re my ? about speech therapy:


Speech therapy (once per week, outside of school) has been *the* one therapy that has helped my ds with his expressive language disorder. Most of his therapy has been directed toward just getting his thoughts out (verbally or written), organizing his thoughts, and developing his written expression (adding descriptive detail etc). He is the only kid like him that his speech therapist has ever worked with, and she's basically developed his therapy program as she's worked with him. The differences with him vs her other clients are first, his high IQ - she had never seen a 2e kid before, and second, he doesn't have any kind of apraxia (I think that is the term - for physical challenges with vocalization?). He will tell you that he just doesn't "know what to say" - and it's not like a kid who has ideas but doesn't know exactly how to put it in words or who is afraid they won't say something correctly - it's like he literally is stumped by the request to come up with anything, like there's a huge void in his brain for that particular request. He's a very concrete thinker - his struggles with expression first became apparent to *us* (parents) when he wasn't able to deal with open-ended writing assignments at school (started in 2nd grade). When he had writing assignments at home he would just melt in frustration and not be able to write even a simple sentence. By the time he was in 4th grade he started telling us he had some of the same challenges with getting his thoughts and ideas out even when it was verbal conversation - that's when it finally dawned on me that maybe an SLP could help, and around the same time I read something about speech therapy for gifted kids who had disorder of written expression.

Once we made that connection, it was also easy to look back in hindsight and see some clues from when he was very young. He didn't start to talk until he was three, and he didn't even babble. I can remember every speaking-type-sound he made between 11 months (the first one) to 3 simply because there were so very few of them. At 11 months his dad was walking out of the room in the morning and he said "bye". I thought cool, he's going to start talking... and instead he never said "bye" again. There were one or two other times when he would say a simple word, try it out, then never say it again. I'm sure you're thinking, um, why didn't we take him for speech therapy then, but we had no clue there was any kind of anything going on other than him being a quirky kid who didn't feel like talking. He seemed to be on-track developmentally in all his other areas, his dr was never concerned at well-kid checkups, and his receptive language was a-ok. Once he did start speaking everything was in long, complex sentences so for sure we thought everything was a-ok at that point - but the flip side of it is, he wasn't being asked to do the type of expressive output that he is challenged with until he was in 2nd grade at school - and then we chalked his initial lack of output and classroom behaviors to either being bored or being a perfectionist because by then we knew he was clearly a really high IQ kid.

Our ds started in private speech therapy because he didn't qualify for speech through the schools (he does have an IEP for SLD/written expression, but the school district doesn't consider speech therapy relevant to that SLD). So we've gone with private speech therapy and even though it hasn't been quick (or easy) ds has made tremendous progress. The key has been his SLP - she cared tremendously about helping ds and was challenged (in a good way - she was interested) in finding a program that would help even though she hadn't worked with a child with his set of challenges before.

So that's our ds. The other thing I'd mention about him is that as he's gotten older he's been able to describe in better detail what's challenging re expressive language and that's helped a little bit too.


I wonder if there might be some clues in the testing he's had (WISC etc) that could help understand the sequencing challenge. FWIW, my ds is a different kid with additional diagnoses, but his challenges include mixing up directions and things like that, and the neurospych tests (including the WISC) provided clues - not the complete diagnosis, but clues that pointed to the need for other tests (many of which your ds has had :)), that helped us better understand what his challenges are.


I agree with mgl and DeeDee. I think that diagnosis can be difficult in part due to overlapping symptoms between different types of disorders. Our neuropsych has a chart which I *really* need to find so I can post a link here that shows the overlap in symptoms between ADHD, ASD, and whatever category it is my ds fits into (he is diagnosed with Developmental Coordination Disorder). It's a Venn Diagram that shows each of those three categories and lists the symptoms of each - with each having some unique symptoms but all three have many overlapping symptoms. My ds was seeing a counselor for awhile to help with learning how to deal with anxiety, and she was convinced he was on the autism spectrum because he would seem to blank out sometimes and be totally lost when she asked him a question. Our neuropsych, otoh, felt she could completely rule out autism, and based on what I've seen of autism questionnaires and descriptions of what is required for a diagnosis I think she's correct and what I've seen of ds' social functioning I think she's correct. Back when he was first having struggles at school in 2nd grade, ds was diagnosed with ADHD (inattentive) by his neuropsych, but that was based purely on behavior ratings and in large part impacted by his then-teachers perceptions of his behavior in the classroom. Once we had accommodations in place for his disabilities (which had been undiagnosed until that eval) the behaviors that had looked like ADHD disappeared. We looked at ADHD again as he was going into his IEP eligibility process in 4th grade because the school raised the question, and he had a thorough screening by his ped at that time - his ped felt that the behaviors that looked like ADHD were instead due to a combination of DCD and high IQ. His neuropsych also screened for ADHD again when she saw him in 5th grade and this time around the teacher ratings (filled out by two teachers) didn't place him as ADHD at all.

All the different possibilities and symptoms can be so confusing, but like DeeDee, I've found that having quantitative data wherever I can get it has been helpful. And although I feel like now, at 12, I have a good understanding of ds' challenges and agree with his diagnosis, I sure wasn't there when he was 8, or 10. It took quite a few years of therapy of different types, accommodations for his challenges, and a lot of "data mining" - 2 trips to the neuropsych, IEP eligibility review at school, input from 2 counselors, ADHD screening through his ped, occupational therapy assessment + therapy, speech assessment + therapy = it was a *long* road to get to where I feel like I have that understanding of what his challenges really are and to feel comfortable that he has the correct diagnosis. I did a ton of research along the way, and talked to as many other parents as I could (mostly online). We tried a lot of different things along the way, some helped, some didn't - but even the things that didn't help ds with specific challenges gave us more information, so they were at least helpful in that way.

I've rambled so much now I can't remember if there is more I had to say - lol. I hope some of it helped!

Best wishes,

polarbear

I'll have a look (thanks)


Oh, I know that feeling. For me it started with DS's sister, who's 19 months older. I won't take up too much space with details other than to say she was I.T.E.N.S.E., cognitively precocious, persistent, intense (did I mention that?), emotional, anxious, ritualistic, serious, PERFECTIONISTIC, oh yeah - intense, kinetic, driven, bossy, argumentative, defiant, (can I say intense again, or is that getting old?). She was this old soul GIANT trapped in this tiny, girlie little person. She wore me out. I thought I was going to lose my mind until her grade 2 teacher saved my sanity with some kind words about how different DD really was (ohh PHEW, it's not just me).

Anyway... by the time I was dealing with DS's issues (totally different, of course - no experience to fall back on, again!) ...I had pretty much resigned myself to the fact that I have challenging children.



Interesting... as in, they can outgrow certain symptoms or learn specific strategies and still have the condition, but with new/other symptoms... I hadn't considered that (thank you!)


My DS in KG: impulsive, odd sounding speech, chewed everything, spinning, falling out of his desk chair, lying on the floor during circle, day dreaming, fixating on things he was curious about, pathologically curious, pathologically (good word ) friendly to a fault - had no fear of anyone and would leave with strangers, flight risk, inappropriate social responses, LOVED to run (couldn't "walk" with us - either sat down or ran ahead), intense, silly, excessively affectionate - loved to hug and climb onto people's laps, obsessed with taking things apart to see how they work (since 1 yr old), very tactile - MUST TOUCH EVERYTHING, very distractable (unless he was focused on something that interested him, played alone a lot (happily), also wanted to play with other kids but wasn't sure how, declined fidget toys because he was very self-conscious about being different. I could go on and on but I won't. Anyway, you get the idea. Some are classic spectrum things and some are not as much.


Same here. At 8, DS appears to have stopped most of the above. Now we recognize the language processing issues (likely always there), he daydreams excessively, gets emotional, still adores running!, fidgets & squirms, impulsive (but getting better), gets frustrated when he's trying to express himself verbally, gets frustrated when he knows something that others don't, intolerance for repetition, impatient, can be argumentative (i.e. too persistent), great sense of humour but has trouble recognizing the social cues of: "it's stopped being funny." Again I could go on, but you get the idea. Just like your DS he's changed dramatically but still has challenges.

(oh, and he walks with us now!! He still runs ahead but asks first now and stops when I tell him).


Yup, I'm with you there. Thank you

It all helps Thank you

Re the language immersion program: we have several language immersion programs where I live and I would have *loved* to have sent my kids through them - they are lottery schools and we tried to lottery ds into them when he was going into kindy, but he didn't get in. We have instead had each of our children in some type of language learning program outside of school since they were very little (toddlers), and now that they are older my ds12 and dd10 have Spanish integrated into their required curriculum.


This would be my one concern in keeping my child in the program - the impact of having to compensate. Children with challenges are constantly having to cope with compensating in some way or another depending on the challenge. The impact seems (from what I've seen) to be the largest in early elementary. My ds12 still gets tired and fatigued more than his peers from dealing with school, and it takes him significantly longer than other kids his age to complete his homework, even though he has accommodations. That may or may not happen with your ds, but if it does, I'd consider that for now, maybe adding in the second language isn't as important as learning how to deal with the language processing challenges. I've seen with our ds that giving up some of the things we felt he could do or had hoped he'd have an opportunity to do was necessary in elementary school so that he had time and energy to do the therapies and learning he needed to do to catch up and keep up with written expression. Dealing with the challenges head-on early on made it possible for him to go into middle school able to have the time to add in some of the other things he wanted to do since he had made progress his challenges.

The other thing I'd be concerned about (but hasn't happened with your ds) is that a challenge might go unrecognized longer than it would have otherwise due to differences in curriculum.

I'm a *huge* fan of K-12 language immersion programs. Several of our friends and neighbors' children have gone through them and absolutely flourished - but they were kids who weren't dealing with other challenges. I truly believe that outside of growing up in a household where a 2nd language is native to one of the parents and spoken routinely, a K-12 immersion program is the 2nd best way for a child to learn a 2nd language - but otoh, I also know a ton of adults who've done well learning a 2nd language who didn't start until high school or later - so if I had to choose due to the amount of "stuff" I was piling up on my child's school plate, I'd choose the remediation for challenges over 2nd language in elementary school - simply because I think ultimately that is what will be of more benefit in the long run.

Also not exactly related to your situation, but fwiw, each of my three kids later chose to learn a different 2nd language than the 2nd language we started them on as young children.

polarbear

Please don't feel like you have to multi-quote and respond to all of it lol!

BTW, the CELF was the test that my ds had from his SLP. His scores aren't low, but they have a huge discrepancy between two sets of subtests, and the SLP also noted on the areas that he scored relatively low in that he took *forever* to answer the question - so even though he got an answer that counted as correct, she could tell something was causing him to struggle with that particular expressive language function.

I'm not sure we would have gotten that specific type of input from a school speech eval. At least not in our school district

polarbear

CCN, interesting ride you're on there.


This list is, to my mind, quite spectrumy. I'm surprised that the people you were working with didn't do the ADOS or other autism-specific tests. It's possible that he was too lovey/huggy and that didn't meet someone's stereotype of what autism is supposed to look like, or because he was smart they just didn't consider it. But with that collection of traits, I would consider it and want to get testing by an autism expert to rule it in or out definitively.

There was a year when my DS fell out of every type of chair the elementary school owned...


It sounds like he's dramatically easier now, which I would expect with maturation and good parenting-- but those challenges still sound frustrating. The intolerance for repetition, the sense that he goes on with something after everyone around him is sick of it-- those can be the inflexibility and perseveration that come with autism. But they might not be-- I do not know your kid. I'm just suggesting that what you described sounds very familiar to me... and might be worth another look from that point of view.

DeeDee

One last thought to add - re seeing signs of ASD in behaviors, seeing those things change over time, and feeling like things are resolved etc as time goes by. We kinda fell into a trap of not realizing how much *we* were compensating for our ds' quirks at home. Everything seemed normal and he seemed to be functioning really well - but once he was thrown into a situation that he couldn't handle, he imploded with anxiety. It wasn't until after he had his diagnoses and we'd learned a lot about what his challenges were that we realized we were subconsciously already accommodating at home as well as being convinced that his "normal" was the "normal" simply because we were around him and used to him.

Um, "used to him" doesn't sound very loving and parental - just wanted to add that my children are the sunshine in my life and I love them all to the moon and back

polarbear

We still have so much trouble with excessive affection from DS7. He hugs anyone and everyone. Including random men standing in front of us in line at the store, while sneaking one arm up and between their legs. Awkward. In a school context it's great, because even though he has social skill and communication problems, adults LOVE him. What's not to love about the jumping giggling cuddlebug that runs up and gives a tackle hug every day? And he just adores everyone, even if he has no idea how to have a conversation with them.

But outside school it's not so great. And with other ASD kids it can be quite bad.



How true.

This is really good to know - thank you - I'm going to push for this service for DS again this year (the school reassess year by year so it's not scheduled for him yet for grade 3), plus I'll look into my husband's coverage to see if we can also do this outside of school.



My DS needs major help with this as well...


That's great! She sounds awesome - flexible and adaptable.


Yes, you're right. My friend's son was diagnosed with apraxia. My DS, like yours, doesn't have this either.


Yes!! My DS tries but gets overwhelmed when his ability to verbalize can't keep pace with the thoughts in his head, and then he'll say "oh never mind! It's just too hard to explain."


My DS is very abstract, but reacts the same way as your DS. Open ended questions are too much for him because his ideas out pace his written/verbal expression.


I was lucky that the school was proactive and suggested speech language therapy in grade 2, which he qualified for because of his diagnosis.


LOL oh, so similar. His older sister waiting until 24 months to talk, then was using sentences in a few weeks, so when DS didn't talk I wasn't worried. He was so social and responsive, happy, loved peek-a-boo, curious, alert, engaged, affectionate, etc etc that none of us were worried. In fact when he did start talking, he was able to make the "K" sound early (many kids substitute this with "T") ...AND he referred to himself in the first person (many kids start off referring to themselves in the third). People commented how advanced his speech was (when he was 2-3). Pffft. Ironic?


The right person can make all the difference. That's awesome


Arrrgh... I want to keep answering/discussing, but DH & the kids need me... more later...

CNN, one last thought - my ds has to use an iPad in school this year, and it has built-in voice-to-text that works *easily* and really well. It seems to help him feel more comfortable with his writing. I wish we'd had it when he was younger. It's not going to teach him how to get his thoughts out, but when he has something to say it works much better for him than either handwriting or keyboarding.

polarbear

Honestly, I think that's what had me confused. I was certain he had sensory integration disorder though. Not so much anymore.


I think it's like an ongoing puzzle... with clues that keep changing. I don't think we'll settle on a definitive diagnosis for awhile. In his file at school the ADHD and E/R language disorders are listed as "provisional."

Oh my goodness... SAME HERE. It's like you've channeled me and written about my DS, lol.

(Except for the "still" part... this has stopped, thank heavens). Now he's much more "socially optimal" in this respect.

Yes... this is a concern I have as well. Grade 3 will be a make or break year, I think.

At the beginning of grade two, it looked pretty bleak. However somewhere along the way the combination of aging, development and support started to make a difference. In June DS's grade 2 teacher showed me a three paragraph piece that DS had written, in French, about our trip to Disneyland. To say I was floored is a huge understatement. His French was very basic (below grade level), and there were a lot of spelling mistakes, but he did much of the work independently. His teacher was very impressed and encouraged.

Yay!!!

However... grade three gets much harder. The question is, will DS continue to grow and keep pace or will he become linguistically overwhelmed? We'll see, I guess.

It keeps the mind moving. Why, yes, I do it too .

And I can't be the only one -- I was thrilled when I read a novel where the hero briefly works with a brilliant mathematician, who brings sturdy shoes because she was promised an interesting problem and the long hallways she needs for her pacing.

Polarbear, where can I buy this, do you know? IS there s name or a link or something?

I believe that feature is built into the iPad 3, right?

DeeDee

Yep, the voice-to-text feature is built into the iPad 3. I don't know if there is voice-to-text built into the iPad 2, it's not included with the iPad 1.

If you have an earlier iPad or an iPhone, we've also found the Dragon app for voice-to-text to be really easy to use, and it's free. The built-in is easier to use than Dragon because it's everywhere - you're "writing" right into the app you're working in. With Dragon you have to "write" in Dragon then either email or cut/paste your text to the app you want it to be put into.

polarbear

It's not in the iPad 2, sadly.

DeeDee