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Help me make good decisions about my 10 year old son
October 30, 2010 9:29 PM   Subscribe

I need help to decide what to do next with my 10 year old son. He's the sweetest most charming kid you've ever met, but he has language processing and attention issues (much more inside), and I feel like we're at a pivotal point. But I don't know what the next step should be or even what my options are.

Prepare for incoming brain dump. I'm not sure how better to express my concerns and my picture of the situation; your patience in reading this is appreciated immensely and I'm grateful for any feedback.

My son is 10 years old and in the fourth grade at a public school in a suburb of the DFW area in Texas. His mother and I (he and his older sister spend a week with me then a week with her and so on) are generally pleased with the school, and he's been lucky in his life to have teachers and specialists that work with and accommodate his special needs, but I feel like he's slipping further and further behind despite the fact that he seems to be "getting it" now more than ever before.

I must say, I've felt some of that for a long time. "Second grade... that's a lot tougher than first, I hope he can keep up!" ... but he's always passed (with grades generally in the B-C range). At the same time, though, he's had lots of accommodation; and it's hard for me to tell how much that affects any assessment of how much he's really learning. Also, my concern is not just with how much he has learned in terms of facts but in terms of reading/study skills - tonight we've been working on one of the first reports he's ever written, and without me nearly writing it for him (attempting to involve him at every. painful. step.), he wouldn't have a chance. There's going to be far, far more of this sort of work in the coming years, and I can't imagine him succeeding at it with his current capability.

Some background: my son was delayed in starting to speak and in fine motor skills from early on. He received services from an early age in Texas' Early Childhood Intervention program and started school at 4 in the Preschool Programs for Children with Disabilities program. He's been variously described as exhibiting sensory integration disorder, issues with language integration/processing and fine motor skills, speech delays, ADHD, maybe others. These terms seem to me to come and go depending on who's working with him; this is an item in particular that I'd like some advice on: what should his pediatrician be doing to help diagnose and treat him? I don't feel like she's as pro-active as I might like, though I don't really know what my expectations should be, either. Obviously just slapping a descriptive label on his issues doesn't do anything by itself to help the problem, but I also have never really had a sense of knowing exactly what's wrong. Maybe there's not a name for it.

About three years ago, we'd tried a couple of medicines including Focalin. It seemed to provide a modicum of help, but also came with side-effects, including near-constant picking at his fingers, etc. He also was a bit of a zombie on it sometimes. The benefit wasn't sufficient to continue with it.

Then, in early 2010, I took him back to his pediatrician and pushed for some suggestion. She referred us to a therapist at a well-respected program at a nearby university. I only ever spoke with this therapist on the phone, but after I faxed her his school assessments and she heard my description of him, her opinion was that his core problem is with taking in, processing, and understanding language which is greatly exacerbated by attention problems. Her recommendation was to give him a medication for his attention problems, hoping that would help him in his acquisition of language skills. After consulting with his pediatrician, I started him on Strattera at 18 mg daily.

The difference has been dramatic. Both his mother and I noticed significant change in his play patterns - now he actually occasionally sits and plays with one thing for several minutes at a time. Other side effects have all been positive, too: he had near-daily toilet accidents before; almost immediately after starting Strattera, those dropped to essentially zero. At the first ARD (meeting with his school teachers and therapists) after we started the medicine, everyone in the room commented on what improvement they'd seen. We've really seen no negative side-effects, either: even his mood is better.

So this is one of my biggest questions: I believe the most common dosage for a child in his age/weight range is 25mg, with some going up to 40. If we've seen such success with 18mg, should we try 25? And if we try 25 and find further improvement, how do we know if we should try even higher?

Another of the foremost questions I struggle with: is 4th grade the right place for him? My intuitive sense is that he'd be better off right now in 3rd, and, honestly, I think he'd take in even more if he were in 2nd right now.

Of course, that comes with its own difficulties of "fitting in". (On the plus side, he's an early August birthday so he's one of the youngest in his class; he's also fairly small for his age.) Also, I don't know what my options are with the school system and with the fact that we're about a quarter of the way into the school year. Obviously I need to talk to them, but I wanted to get some advice first. In meetings with his teachers, I've occasionally floated the idea that it seems like he might be better off in a lower grade and I don't seem to get any buy-in at all. Not that there's a negative reaction, but it just doesn't seem to be something they're interested in exploring; I, regretfully, have never pushed the issue in the least, being as unsure as I am of whether that's the right course. And I suppose they have incentives to keep promoting kids and not holding them back? So how much resistance will I meet if I wanted to move him to a lower grade? Might such a move affect his eligibility for services? Is such a move even done in the midst of a school year? I don't expect it would affect him socially in a bad way: in fact I'd expect he'd end up making a lot of friends that are closer to "his level". He's certainly not the type to angst on his own over being moved back, but of course he might if his peers made him feel that way. And of course it might cause problems later on down the road (when he is at a stage where he'd be concerned by such things) if his age difference was noticeable and remarked upon.

For a while now I've kept a file of notes on issues or differences contra other kids that I notice with my son. I'm going to paste it below; I know this is even more brain-dumpy than the rest of my post and it doesn't even really have a specific question behind it - this is just a call for comment and advice, but I don't know a better way to paint a picture of him. Also, I don't mean to imply that I consider all these items as being problems or even necessarily non-normative, but my intent is just to describe these aspects of him and to give a sense of what's "different" about him from his peers.
  • His only understanding of humor is slapstick. Not that most 10 year old boys are appreciating Nabokov, but wordplay and abstract concepts essentially never make him laugh. He doesn't "get" jokes in general. Not that he doesn't do a good job of laughing along (un-self-consciously, I might add).
  • He exhibits little capability for abstract thought - one example: several times over the last few years I've shown him the image here; every time, his answer is "in the box". Each time I've attempted to explain why she would look in the basket. He acts like he understands, but I've never really felt like he's "gotten" it.
  • Attention problems - even with the improvement from his medication, he has a lot of trouble staying on task and isn't self-directed at all. It's rare that he can be given even a small handful of problems and work through them one-by-one without being kept on track by reminders of what he needs to be doing. Occasionally he'll get into a repetitive task (answering multiplication problems by looking answers up on a chart, for example) and have some success alone, but I've never seen him do a few of one type of problem and then go right into a set of problems of a different type.
  • He can be clingy and have issues with personal space. He's famous among his cousins for getting up-close and touchy in a way they don't like. He's very sweet and loves to hug, but sometimes it can be too much.
  • Problems playing games with other kids - when it's his turn to be "it", he'll just quit. Despite this, he is popular. Neighborhood kids come here and play more often than at nearly any other neighborhood house.
  • He seems to prefer younger children as playmates. His best friend is six years old. (But he spends lots of time with kids his age too.) He loves playing with little girls... I think perhaps because they're not intimidating. This isn't to say that he doesn't like to play rough and tumble: he certainly does. I don't feel like, though, that he generally plays "too rough"... he doesn't take particularly out-of-line risks or hurt his friends during play more often than would be expected from little boys.
  • He can be "babyish" for lack of a better word at times. Also, lethargic and very resistant to trying new things. This has been helped some by his medication, though not radically.
  • He has a strong "acting" ability - sometimes the border between make-believe and real life isn't particularly clear, I think.
  • He continues to have trouble with coordination and fine motor skills. Catching a ball is difficult, though not impossible. His handwriting is poor. He has no trouble, though, with wrestling, climbing trees, etc.
  • Perhaps related to the above: he sits far more often than his peers with his legs splayed (in a "M").
  • Scrapes and injuries provoke a far greater reaction than one would expect from most kids. He can be feeling fine and become aware of a scratch on his arm from earlier in the day and start to whimper. A bonk on the head is a traumatic injury until his attention can be redirected to something else: a little tickle can make him laugh and forget about the thing that you thought he seemed like he was going to die from 5 seconds earlier. In general, the best way I can say it is that his experience of the world seems far more intense than most people's.
  • He continues to have trouble with "ask" vs. "tell". He sometimes mixes up "looks like" and "sounds like". The distinction between lunch and dinner is vague for him. Distinguishing between how/why/when/etc can be quite problematic. At least the latter issue seems in my mind to be related to his issues with abstract concepts: he seems to have trouble with anything he can't see. At 10, most of his peers have some understanding of roughly how long an inch is versus a mile. He doesn't. He also doesn't have any concept of what time it is, what it means when he's told it's 6:30, or how long five minutes is versus an hour. "Next month" has essentially no more meaning to him than "next year". He gets that it's Saturday today and that he won't have school tomorrow since it'll be Sunday, but even on that he'll ask hesitantly to make sure he's got it (and often will be wrong).
  • Likewise, he has trouble with ontological hierarchies. The fact that a jet is also a plane seems to be a really difficult thing for him. The fact that we're in Texas which is part of the USA which is a part of North America - I don't get a sense that any of that is in any way meaningful to him.
  • He mixes up "d" and "b" very often. He reads only the first few characters of a word and jumps to a conclusion of what it is. Likewise, he very often leaves off the endings of words in his reading.
  • He really doesn't like to write - it almost seems "painful" sometimes.
  • He carries one or more toys with him much of the time, often to his detriment - things can be frustratingly difficult for him because he's trying to do them with an action figure in his hand that he never thinks to put down.
  • He really likes to wear costumes. He lives much of his life in a cape and has since he was tiny. I don't get a feeling that he's trying to cover up or hide from the world: he's not bashful or shy. In fact, he strikes up conversations with people in "inappropriate" ways - it's not problematic, I don't mean, but the fact that in our society we don't generally talk to the guy behind us in line or show him our superhero toys we have in our hand isn't something he "gets".
Anything I can do to help this precious boy live the most enjoyable life possible, I'd love to know, so any feedback is very much appreciated. Thank you.
posted by BaxterG4 to Education (20 answers total) 9 users marked this as a favorite
 
Have you taken him to see a child psychologist? Take this list of your issues with you.
posted by TheBones at 9:38 PM on October 30, 2010


Looking for general feedback (recommendation of seeing child psychologist noted and appreciated), but the two biggest questions are, in tl;dr format: Thanks.
posted by BaxterG4 at 9:45 PM on October 30, 2010


Obviously just slapping a descriptive label on his issues doesn't do anything by itself to help the problem, but I also have never really had a sense of knowing exactly what's wrong.

I think you should consider getting comprehensive psychological and neuropsychological assessment with a child psychologist (typically psychologists rather than psychiatrists specialize in assessments) with expertise in learning disorders. That, I think, will give you a better chance of knowing just what's going on.

And it's unclear whether the therapist you talked to over the phone was a child psychiatrist, but that's who probably has the most experience in prescribing these kinds of medications. If you aren't talking to a child psychiatrist about it, you might want to start -- and give them the information you get from the assessment.

Perhaps ask your pediatrician for recommendations for these people, or contact the psychiatry/psychology department of a major hospital in Dallas (maybe Baylor?).
posted by shivohum at 9:51 PM on October 30, 2010 [1 favorite]


Your list of observations above paint a picture of him being somewhere on the autism scale. Whether or not he is, that is something that you will have to talk with a professional about.
posted by TheBones at 9:51 PM on October 30, 2010


I can offer thoughts on a couple tiny points about schools: "He's been variously described as exhibiting sensory integration disorder, issues with language integration/processing and fine motor skills, speech delays, ADHD, maybe others. These terms seem to me to come and go depending on who's working with him"

I see a number of special ed IEPs and this is not at all uncommon. I'm a layman but it seems to me (from my observational, non-expert perch) to have a few root causes: Things present SO DIFFERENTLY in adults than in children that they can be hard to diagnose in children; children are absolutely awful self-reporters and a lot of these things demand at least some amount of patient self-description of symptoms; children can be difficult to test (did they misunderstand, get it wrong, or do they think they're being hilarious by being wrong on purpose?); and children's minds and bodies change so quickly that they can grow into and grow out of "problems" or particular behaviors related to underlying problems. It seems to me the focus of the special ed teams is to get a child appropriate interventions for that child's needs, not to worry too much about the labels attached.

I agree that a comprehensive assessment seems in order. But that again the key point would be the appropriate interventions for your child.

In my experience it's fairly unusual to have a child held back a year even if the parents want it; there's a lot of stigma surrounding the issue (and a lot of push in favor of "social promotion" to the point that it's a problem) and I don't think a lot of schools think of it seriously as an option. I think you will probably have to push to get the school to discuss it seriously with you. A two-grade jump down would be very unusual in elementary school and I suspect the teachers will have concerns about having a child who's so much older (even if not socially/emotionally much ahead) in with younger children. High schools can often accommodate that much age disparity but elementary schools aren't used to it and may resist merely on those grounds. In many schools, the options are Special Ed mainstreaming with age-mates, or Special Ed-only classes; in my district, those are probably the options the school would want to offer you if you wanted to hold your child back two years. If you wanted to hold him back a year, they would probably allow that (after much beanplating on their part) but would probably want to do it at the end of the year for the next year. It does sound like, if that's the route you decide to go, he might benefit from a mid-year move. But hopefully you have good school administration and special ed people who can help with those decisions, since that's the sort of thing they're hopefully expert at.

On another note: "several times over the last few years I've shown him the image here"

I actually found that image difficult to parse, the pictures weren't very good and the story seemed disjointed. I had to look two or three times to realize the blond girl was back in the last panel. Does he have the same difficulty with this if he sees a little play about it? (One puppet hides the ball from the other puppet, etc.)
posted by Eyebrows McGee at 10:02 PM on October 30, 2010 [1 favorite]


I'm sorry I couldn't follow your entire question, but this jumped out at me:

her opinion was that his core problem is with taking in, processing, and understanding language

Has he been formally assessed for dyslexia and/or an auditory processing disorder? My beloved eldest nephew seemed to be on a similar path as your son when he was younger (he's also 10 now) before being diagnosed with severe dyslexia and auditory processing issues when he was 6 (when I asked this question). He went into intensive tutoring designed to address these specific issues and the changes were dramatic. Obviously, I can't diagnose your son and forgive me if you've already gone down that route, but I wanted to put it out there.

I wish you and your family all the best. Your son is lucky to have such a loving father.
posted by scody at 10:06 PM on October 30, 2010 [1 favorite]


For the writing issues, look into dysgraphia.
posted by elsietheeel at 10:13 PM on October 30, 2010


A clinical psychologist can do a much more comprehensive assessment than the school will have done (which will be only educational, not biopsychosocial, not anything beyond what the school MUST do). This will be hugely important to figuring out WHAT issues do exist (for example, there are tests to see whether he actually has ADHD that are highly validated instruments), and then the psychologist will be able to recommend a therapeutic course of action and treatment plan, based on the assessment. The bulk of the questions you have will very likely be able to be answered by this psychologist, in a way that people on the internet (even ones who are mental health professionals) cannot.

A few suggestions I have, based on my experience working with kids who have AD/HD, various sensory processing issues, autism spectrum symptoms/diagnoses, all kinds of stuff that you mentioned, although I have to disclaim that I don't know *exactly* how stuff works in Texas school districts compared to California, admittedly:
- The pediatrician is sort of not necessarily the most important person to get involved in an assessment and diagnostic process--a psychologist is.
- It's advisable to medicate with the lowest dosage that works well.
- Get an IEP (individual education plan) going with the school as soon as possible, if you haven't already; his being in 4th vs. 3rd grade isn't the only option you have (or shouldn't be).
- Get kiddo involved in some out-of-school group/peer activities that he likes, to help support his social skills and confidence.
posted by so_gracefully at 10:40 PM on October 30, 2010 [2 favorites]


You need to make this a project. You've got some great notes. Now you need to go into Poppa Bear Mode and go all out in assembling a team to help you figure out these next steps. If you don't like your pediatrician or think she could be more proactive, then SWITCH! Or get a second/third opinion. And definitely push to get a comprehensive CHILD psychiatrist and psychologist assessment, including learning disabilities, including everything. Print your amazing list.

This therapist at the program - am I understanding that she only spoke to you on the phone, and never met your son? Who prescribed the Strattera? What do they think about increasing the dose?

It sounds like you have amazing capacities to figure this out, but nobody else out there is going to be the Central Command for this situation. If he's getting bounced around from place to place and diagnosis to diagnosis, try to find a group of consistent and respected folks to help guide you now and in the years to come.

Was this the center to which you were referred? But did your son actually go for a series of tests or was it over the phone? If so, can you schedule an appointment(s) there on your own? It looks like a good place to start.
posted by barnone at 10:50 PM on October 30, 2010 [1 favorite]


You need a team that you trust to help you with these decisions. For example, a child psychologist who is expert on the use of medication in learning disabilities should be used to advise you on the options for the Strattera. They should be able to explain whether more is better, how long it takes to see the full effects of the medication etc. The final decision belongs to you and his mother but you need accurate information to make the right choice. (Note - this is usually beyond the scope of expertise for a pediatrician, you want a specialist.)

You also need someone who can help you figure out the best way to interact with your son and help him learn. This might be a special ed person from school or an occupational therapist.

Good luck!
posted by metahawk at 10:50 PM on October 30, 2010


Perhaps these folks would have a list of suggested child psychologists in the area. Not that your son necessarily (or even 'maybe') has autism (we have zero way of knowing), but they'll know good psychologists who work on processing, sensory and communication issues. They also have some good-looking after-school programs for kids. If appropriate, perhaps your son would be able to participate in some of those services - it's worth an inquiry.
posted by barnone at 10:55 PM on October 30, 2010


I have a friend whose son was showing similar symptoms at an early age. She went on the offensive with his care and tried him on a gluten-free diet when he was around 4. In a matter of days he went from saying "I do dat?" to "Mommy, can I do that?" His sensitivity level for external stimuli was also greatly affected for the better. She went on to try him casein-free as well, which helped him in other ways (he began reading and had much greater emotional stability).

Going gluten-free is not for the weak of heart - once, her son found and ate a single Goldfish cracker in a playground and had immediate setbacks until it cleared from his system - but it made such a difference for him that I felt I should bring it up as something you could consider.
posted by Addlepated at 11:15 PM on October 30, 2010


(Reading back, I realized that it might seem I was saying you did not similarly go on the offensive with your own son's care, and that's truly NOT what I meant! If you weren't on the offensive, we wouldn't be here right now. Sorry for phrasing that poorly.)
posted by Addlepated at 11:17 PM on October 30, 2010


He's been variously described as exhibiting sensory integration disorder, issues with language integration/processing and fine motor skills, speech delays, ADHD, maybe others.

Ha, except for the ADHD, it sounds like your son and my son (who is almost three years old) have pretty much the same unusual mish-mash of symptoms and diagnoses. They're not autistic (to the contrary, very affectionate and sweet and empathetic and non-aggressive), but have poor muscle tone (prefer W/M shaped sitting, poor posture or uneven gait), unusual language difficulties (big vocabulary of nouns but a poor grasp of grammar), like to constantly carry around a toy so that their hands are always engaged (Woody the Sheriff from "Toy Story" in my son's case) which is probably related to their sensory integration challenges, and so on. "Lethargic" when confronted by new locations or things or routines to try? Sometimes inflexible or immature? Loves acting or repeating dialogue from movies and TV (echolalia), but without real depth? Occasionally inappropriate reactions to physical stimuli or pain (either over- or under-responsive), due to sensory integration issues? Gee, this all sounds extremely familiar...

In my son's case, many of these same odd symptoms apparently run in several male members of my husband's family, going back at least three generations and spanning many cousins and second cousins. So there's probably some kind of genetic quirk going on, one that doesn't have an official name yet. Meanwhile, the diagnoses range from verbal apraxia, to moderate-to-severe mixed expressive-receptive language disorder (MERLD), to hypotonia, to sensory integration disorder, to coordination disorder, to plain old encephalopathy (which actually gives us the best coverage for our health insurance despite saying nothing particularly substantive) -- and more. And yet none of them is exactly correct. It's kind of like the old story of the six blind men feeling an elephant and trying to determine the animal's shape and make-up by comparing what part they've each managed to grab ahold of.

We had our son evaluated by a developmental pediatrician just after he turned two -- not a regular pediatrician who is, as you have rightly surmised, probably out of his/her depth on this kind of thing. The developmental pediatrician did a very very thorough work-up of our son's capabilities, including two long sessions with him doing sensory, motor planning, verbal, and other kinds of testing. She also ordered several kinds of medical tests, including doing a karyotype (a chromosome examination) to check for any known syndromes or DNA deletions. None were found. She also checked his mitochondria, since many of these symptoms can be associated with rare congenital mitochondrial disorders. None were found. She also tested his blood for several kinds of vitamin and amino acid deficiencies. I was kind of skeptical about that part, but before he even had the tests done, she was telling us that kids like our son, who are not autistic but have these kinds of odd "hybrid" developmental problems, often have congenitally or chronically low Vitamin D levels, Coenzyme Q-10, and Carnitine levels, and other slightly wacky results. It turns out she was right -- the blood test results showed low Co-Q 10 and extremely low Carnitine levels (if I remember correctly, something like 20 is considered the low end of normal, and our son had a measurement of only 8!). His Vitamin D was actually normal, but he's a pale kid living in Southern California whom I rarely cover in sunscreen, so maybe he got lucky there. He also had something a little odd show up with his urine sample results. So, it looks like whatever is going on with him (and like I said, it seems to run in some, but not all, of the males in the family) has a metabolic component that just hasn't been identified yet.

So, his doc then put him on fish oil supplementation every day, and we actually saw some improvements from that within just two weeks. She also had us put him on supplemental Carnitine for his apparent deficiency, which I mix into his yogurt for breakfast. I don't know if that's actually having any effect, good or bad. And she put him on liquid Co-Q 10, which I stopped giving him after after just three days because it was clearly making him kind of hyper -- throwing his toys around and being kind of manic and somewhat insomniac, which was very out of character for him. So that one was obviously having an effect, but not a good one.

Next, she had us follow up with a fantastic speech therapist and an occupational therapist, whom we were seeing three times and two times a week, respectively, and whom he's now seeing both twice a week for an hour each time. This kind of professional help has been crucial. The speech therapist has made huge progress with him, getting him to name objects and respond to speech. And since she's also trained in ABA, she uses some of those techniques to work on turn-taking and processing skills integrated with his language use. The OT has been working on his postural stability, his proprioception problems, his fine motor skills, and so on, and has also helped him make great progress. She also recommended we get him into swim therapy -- swimming lessons! -- which we did, during the summer, and will pick up again in the spring. The swimming is helpful not only to his muscle tone but to his sensory integration problems because it provides whole-body feedback against the feeling of the water.

His OT also picked up on something we didn't -- he seemed to have trouble looking at his toys up close without closing one eye, and he sometimes made funny faces as if he were squinting. It turns out he has convergence insufficiency -- he sees double at close range. Check out this story from the New York Times about it: Not Autistic or Hyperactive. Just Seeing Double at Times. This also may explain why he was totally uninterested in any books we tried to read him -- we had figured that was due to his language problems, but in reality it may have been due to not being able to see just one of the page or the pictures or letters on it. He is now working with special prism eyeglasses in his OT sessions -- which he apparently loves! -- and has suddenly developed an interest in books lately. And his coordination disorder may in fact have been due in part to his inability to have good depth perception (leading to a lot of trips-and-falls), as opposed to merely muscle tone issues. For example, he has just in the past two weeks, at age 2 years 11 months, finally started to be able to jump with both feet off the ground. Next up is working on catching a ball (he can throw one okay). Keep in mind that his convergence insufficiency was diagnosed and is being treated by a special pediatric optometrist who could measure his neurological responses to certain visual stimuli, not by a pediatric ophthalmologist, who merely confirmed that his eyeballs and retinas were healthy and that he probably has 20/20 vision. Again, you want specialists, not generalists for this kind of thing.

We suspect as our son gets older that he may be eventually formally diagnosed with an auditory processing disorder, which is what his dad's first cousin had/has (among other issues, including sensory and step-by-step processing). But we were told that no doctor or speech therapist can fairly give that kind of diagnosis to a kid this young; it more likely can't come until he's six or eight.

Okay, so that's my son; but now back to your son, who sounds pretty darn similar, just older. It sounds like your son is no longer receiving any intervention services -- is that right? He's likely entitled to them, for free, through an IEP and the school district. He sounds like he needs to be reviewed not by a regular pediatrician who generally deals with chickenpox and ear infections, but by a developmental pediatrician who is up on the latest work about developmental delays, including metabolic and genetic research. He also, IMHO, really needs to have evaluations by a speech therapist and occupational therapist. At ten years old he should not still be sitting in a W/M all the time; even our three year old has almost stopped doing that after lots of work on his core strength (leaning backwards over a yoga ball, etc.). He may need accommodations in school, like sitting in a more sensory-appropriate seat like a beanbag or a yoga ball pulled up to his desk instead of the usual annoying plastic chair. He should probably get the standard complement of blood tests done, just to rule out anything obvious like Fragile X or one of the known micro-deletion syndromes. Fish oil (omega-3's) can't hurt. And so on.

My point is that there's lots and lots more that you can be doing -- and should be doing -- before making the leap to drugs. I'm glad your son is doing well on Strattera, but in my opinion it can't really take the place of consistent weekly or bi-weekly one-on-one evaluation and therapy. What's the point of your son sitting still in class if he still can't quite parse the teacher's words and grammar about the lesson, or control his motor skills to write a paper, you know? And I really think it sounds hinky that some woman who never even met your son in person, much less medically evaluated him, basically stuck him on drugs over the phone. Your son's issues do not sound like classic ADHD, or at least not solely, and I think you realize that based on your perceptive bullet points.

You can't leave all this up to a standard doctor; you need to start calling in specialists who can work with him on a consistent basis, before he falls behind in school even more. They can also help you deal with the school district who may be required to pay for him to get services -- i.e. this help could be free, or very low-cost, to you if he qualifies. There's a lot that can be done, and it's so great when you can see your kid progress instead of flailing. If you want to MeMail me, I can tell you the names of the people we're working with here in Los Angeles, and maybe you could call them and ask if they have contacts in Texas for you to see. If it's not too far away for you, I know a lot of people in the South who have kids with these odd special needs go to Vanderbilt for very thorough evaluations from the top doctors in this area of expertise. I forget the head doctors' name there -- it's a husband and wife couple -- but I'm sure Google will know.

I guess I should also point out that even among the members of my husband's family who have had this kind of quirky childhood, they all turned out just fine -- and in some cases, were compensated with unusual skills, be it terrific visual/spatial skills or fantastic memory or mimicry abilities or whatever. One cousin who used to sit in his crib and repeatedly bang his head into the bars and didn't talk at all until he was three years old wound up going to Yale at sixteen and is now an anesthesiologist. The cousin I mentioned with the auditory processing disorder (among other issues) is now a college student studying computer science and economics, and a baseball stats geek. So while this is all very frustrating (and sometimes exhausting) to deal with, at least we have a pretty good perspective that with proper treatment and support, these quirks don't automatically have to mean academic or intellectual problems down the road, and can even mean an increase in what you could call "geek cred", for lack of a better term. Maybe that's a stereotype, but it seems to be holding true. Despite our son's language deficiencies, he has already completely figured out his grandmother's iPad...

Finally, even after scouring PubMed and numerous online mailing lists over the past year, this 2009 paper -- SYNDROME OF ALLERGY, APRAXIA,
AND MALABSORPTION: CHARACTERIZATION OF A NEURODEVELOPMENTAL PHENOTYPE THAT RESPONDS TO OMEGA 3 AND VITAMIN E SUPPLEMENTATION (PDF)
-- based on a recent study at Children’s Hospital and Research Center in Oakland, seems to be the only one I've found that actually covers this same unnamed "not-autism-but-not-neurotypical-either" cluster of odd symptoms/diagnoses, including the Carnitine deficiency, the hypotonia, the sensory integration issues, the severe food allergies (did I mention my son has those too?), and so on. It's not from a prestigious publication, though, but I did think the results were pretty interesting. Autism is a "hot" area of study right now, but I hope that all that research eventually spills over to help these kids who have these other kinds of non-autistic neurologically-atypical profiles. But I guess we can't give out grants to doctors to study these syndromes whose names don't exist yet, so we have to make do with the crumbs from other kinds of research.

Anyway... Best of luck with your son and with getting him appropriate help. You're right to be concerned and I think you'll be pleasantly surprised at how much the right kind of assistance can help him make progress. Please feel free to MeFiMail me any time if you want to talk.
posted by Asparagirl at 1:22 AM on October 31, 2010 [19 favorites]


Special ed teacher and parent of a sped kid here.

Before making any decisions (about meds, holding him back, anything), you really should get your son fully evaluated by a children's hospital. It's about a 2-day process (and can take months to get an appointment) for a full neuro-psychiatric assessment but you'll get a very clear picture of how your son (who sounds adorable) is doing.

In the meantime, his school should have him on an IEP (I can't tell if he is or not). If he isn't then you have to write them a letter documenting your concerns and they'll test him, convene the team, and decide whether or not he requires services (but if you can get an outside assessment done within the same time frame, then do that instead and use that report to determine eligibility).

It's a long process to get appropriate services and support, but these are absolutely your starting points before considering anything else.

It can feel overwhelming, but keep in mind that it takes a while but there are answers out there. Good luck!
posted by dzaz at 5:08 AM on October 31, 2010 [3 favorites]


I'm seconding all the voices that are saying you need a more thorough psychological/psychiatric diagnostic workup than what appears to have been the case up until now. You cannot diagnose him yourself, nor can your pediatrician or his teachers.

Having said that, I just want to add that you may NEVER get the clarity of the "One Diagnosis" that explains everything. There may be multiple co-morbid things going on, and a lot of kids don't fit neatly into a single diagnostic box.

As far as what to do about grade level--in my experience (which is not with the Texas public schools), schools are more reluctant to hold back students these days. We had a lot of emotional/behavioral/academic issues with my daughter--starting really back in 1st grade but becoming more pronounced by 2nd and 3rd grade, and given that--coupled with her being terribly young for her grade level (late December birthday)--we considered for a while having her held back. However, we wound up sticking it out at her original grade level and doggedly pursuing diagnosis/treatment/educational supports.

It was a long, long row to hoe, but the kid who was below grade-level in everything in 2nd/3rd/4th grade, with illegible handwriting/almost non-existent calculation skills, is now an A/B 8th grader with a couple of honors classes on her schedule.

Hang in there, really be your child's advocate, and be as patient and accepting as you can.
posted by drlith at 6:42 AM on October 31, 2010 [1 favorite]


I can't speak to the rest, but with respect to holding back a grade, it's definitely not as common, but I have known a couple of families who did it. Both kids were boys like yours, on the younger side for their first time through the grade - one repeated kindergarten, one was mid-elementary (2nd/3rd grade - can't recall which). Both families felt it was a good decision with positive effects for their kids in both performance and emotionally (might not be as much of a factor for your kid).

One thing - to keep the kid from being stigmatized, both of these repeats were done in conjunction with a change of schools. The older kid's family took advantage of a job-related move to have him repeat the grade in the new school/city. The kindergartener did K the first time in a public school, and then the parents decided to go with a private school and he repeated K there before moving on. I don't know if this would be possible/desirable for you, but I'm not sure either of the families would have done it at the same school.
posted by clerestory at 7:55 AM on October 31, 2010


IANAD and this is not medical advice, but you may find it helpful to read about pragmatic language impairment, formerly known as semantic-pragmatic disorder.
posted by easy, lucky, free at 10:06 AM on October 31, 2010


I sent you a private email echoing the importance of a neuropsych eval and an IEP. I will add that there is zero (or, arguably, very little) scientific support for the theory that esoteric diets are very helpful. More protein, and fewer carbs and dairy and processed food, probably is slightly helpful, but that's true for the average American without disabilities.
posted by Mr. Justice at 10:55 AM on October 31, 2010 [2 favorites]


Nthing Development Ped and Child Pysch. Your doctor can give your son his sore throat meds but isn't entirely qualified to deal with this.

As an above poster said, this is your new project. Jump on it.

Fish oil (go Norwegien for best quality) mixed in a smoothie is a good idea.
posted by k8t at 12:00 PM on October 31, 2010


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