Gifted Issues Discussion homepage Forums Twice Exceptional Some questions about reading

Long bit of history and then some questions

So DS showed an early interest in, well, pretty much everything educational. At 18 months he saw a random fridge magnet I had from my old job and started saying emma, emma. It took me a moment to figure out he was saying M. So I ordered some standard wooden magnet letters and sat down with him to go through them. Turned out he already knew all of them. The only exposure he had had was through books, we often read him B is for Bear and Dr. Seuss's ABC Book.

Around 20 months I sat down on his bed with him and went through the letters and sang that song the leapfrog toys sing (the B says buh, the B says buh, every letter makes a sound the B says buh). We had no media in the house or talking toys, so I figured I would just sing the song that the toys sang in many other homes. The next day he knew all of the letter sounds when I quizzed him on them (whether he learned them from me singing the songs for the letters the prior day or already has some knowledge of them I have no idea). He was also able to name things that started with each letter.

From that point on I would spell short words with the magnets and he would read them. Sometimes he would sit down with the magnets and write things on his own. Shorty before he turned 2 he wrote craccrs for crackers for instance. I thought it was pretty good, considering his age

From 2 to 3 he continued to be interested in letters and words, but was not interested in reading books. He would read funny sentences I wrote about the family, but that was it. I didn't really try to push him, but I did wonder why if he could read words and loved letters he didn't want to read books. I figured he didn't have some other needed skills for actual reading.

At 3 I pushed him a little and found a few early readers he was interested in. Of course he quickly memorized everything I gave him, so I had to constantly look for novel books that he was interested that were around level 1. He hated any word he didn't already know and would refuse to read at all as soon as he either made a mistake or didn't know a word. Clearly this made reading practice difficult. I ended up trying Dick and Jane books and they were perfect. No new vocab and everything was very simple, but at least he was practicing the skill of reading.

After he had some decent success with easy stuff and developed some confidence, we moved on through leveled readers until content got too inappropriate for a 3/4 year old.

By 5.5 we felt pretty confident moving him on from early readers to short chapter books and he started reading Magic Tree House and some other short kids novels. His reading vocab really expanded since then (he just turned 6) and he knows so many obscure words and scientific words. He reads individual words very quickly and seems to have great comprehensions of what he has read (for instance, he remembers the age of kids in the story, what time it was in certain scenes, the exact words used to describe a certain smell). I bought him a 4th grade reading workbook for homeschool and he is doing very well in it.

Now, finally, on to my questions. First off, I wonder if I taught my son to read before he might have been ready or if I just facilitated his own learning? He certainly didn't pick it up on his own, I told him the letter sounds and read books that teach the letters. OTOH, I think most families do and it's probably pretty normal to encourage reading? Because of some specific issues with his reading I worry that maybe he learned before he was ready or something?

His reading now is honestly worse than it was at 5.5 and he has stopped reading chapter books and no longer wants to read much of anything. Not that he was ever really keen on reading actual books, but he seemed to get some enjoyment out of actually accomplishing something and I know he loves the stories and learning. He would sit half the day to listen to me read to him, which is pretty impressive for a kid as hyper as he is.

So, our main issues are slow reading, skipping words, skipping lines, skipping whole pages sometimes (reading left page, but not right), and guessing at words, even words he knows well. Like he might read "They all went to the car" as "They were at the car," missing all, changing went to were and to to at. He will reread the sentence if it doesn't make any sense and figure it out. He is also stopping constantly while reading, very often in the middle of a sentence and just staring. I often have to prompt him to continue. I think he is daydreaming, perhaps thinking about what he has read? He starts right back up reading as soon as I prompt him.

He is not diagnosed with it, but we are all certain he has ADHD. I am having him entirely reevaluated next week, especially for ADHD. He is currently diagnosed with Tourette's and ASD. Is this normal reading for a kid like him? He is not able to really enjoy reading because it just seems like so much work for him still. But then some days he will just seem to be really on that day and read rather fluently again like he used to. Some people have suggested internal distraction as a reason for his difficulties, but that isn't really very helpful as far as working on the problem goes. I just want him to enjoy reading because he loves books so much and reading is one of my greatest joys in life and I would like him to be able to experience that as well.

Math also became more difficult for DS about 2 months ago. He suddenly could not calculate in his head like he used to and refuses to concentrate at all on math. He used to love math and carried his math books around like security blankets. I feel like his working memory is shot. At the same time, in December he had his IQ test and scored very well on working memory, which was a huge surprise to me. Then I wonder if his interests have just changed? At 3 he could add 764 and 893 in his head in a matter of seconds, right now he can barely get through it on paper. In September he was really into fractions and could add, subtract, multiply, and divide them in his head, and then reduce them, just for fun, now he just complains it's too hard if I ask him the multiples of a given number. But he is just as capable of understanding things as ever. We talked this morning about global warming and alternate energy sources and he was so engaged in the conversation and really got all the science and showed so much concern about the issue. So I know he's OK cognitively other than the specific issues he's having.

As far as writing goes, he isn't great at it, but he's getting better. He still writes letters starting at the bottom and reverses the same letters and numbers he has reversed since 2 despite daily practice using an app recommended by the IU. He loves the app though, so even if it's not working, at least it isn't work! Spelling is bad, but I think spelling is usually bad at age 6 barring exceptional talent at spelling. He is able to compose sentences and get them written down on his own, but does better if I help with spelling and remembering the sentence for him while he works on the writing. He has trouble with spacing and always forgets punctuation. He mixes upper and lowercase letters, using whichever is easiest to write. I don't usually correct him, but I do occasionally talk to him about the rules of writing and I do remind him to add punctuation after each sentence.

Does any of this stuff sound like I should be concerned or am I just overanalyzing things? The IU has just stated for the last few years that he shouldn't be reading anyway, but now he is 6 and 6 year olds read. Since he is in homeschool and out of preschool we don't have contact with the IU or district at this point, but I guess we could bug them to evaluate his reading if needed? I'm sure they will just say he is way ahead and not be concerned about his speed at all, just comparing him to his peers. And maybe it's really nothing. Or just part of ADHD. Hopefully we will get some answers next week as well.

My main concern, based on your description, is that these behaviors are of recent onset, and that he appears to be regressing in his academic skills, or at least newly inconsistent in demonstrating them. My first question would be, what changed in his life about two months ago? Curriculum? Type or difficulty of books he is reading? Family circumstances? His schedule? Sleep? Health? Extracurriculars? Growth spurt? You don't have to answer any of these that you'd rather not have out in public, but do think about them. Has anything else about him changed, other than his academic/cognitive presentation? Such as his mood, activity level, appetite, sleep habits, free play choices, etc.

The recent onset doesn't eliminate underlying learning disabilities or ADHD as the cause, but does introduce a large category of rule-outs.

Writing is in a different category, as you report a long-standing pattern of difficulty. What you describe does sound like there is something there to monitor, perhaps in the dysgraphic or fine motor delay category. Although expectations for six year old are pretty low, I'd still keep a close eye on this. With the level of reading he's had for a while, I would expect his spelling vocabulary to more closely approximate his reading vocabulary. Can he spell if he doesn't have to write it down (orally)?

I would say that there were definitely mood changes starting in November. I should back up further and mention that DS was prescribed Tenex in August for severe tics and almost instantly it seemed to work to fix them as well as calm him down a bit in general. We thought it was pretty much a miracle drug. He was able to slow down enough to think before he acted and everything seemed great.

Then a bit before Thanksgiving he just got super oppositional. My kid was born with a healthy level of opposition, but this was newly awful. He was also very irritable. I went to the pediatrician in December and they said to see the dev peds. We went there (over a month later when they could get us in) and expressed concerns about how miserable family life had become with DS. I told them I was worried one of the two of us would end up committed if things continued as they were. We left with a script for extended release Tenex. At the time I assured them we would not be coming back, it's an hour drive and more of the same med was not what we needed.

Regardless, we tried it. He became so much more miserable it was ridiculous. And he seemed even less able to think. But that could be because he was screaming and/or crying about everything. After 2 weeks I took him off of the stuff. He went about 3 nights without sleeping much at all, but still seemed a bit happier. Then he adjusted to not having the Tenex and has been sleeping fine since (fine for him, maybe not fine in comparison to other 6 year olds).

It's been 3 weeks and he is still happy. He seems to be able to concentrate better. But, when he originally started regressing in reading it was about 2 months before we started the Tenex, but it did coincide with the huge increase in tics that caused us to try medication to begin with.

I should also mention that DS tends to go through good and bad periods all on his own, regardless of medication. I do believe the Tenex was making him feel bad in some way. Why it didn't seem to do so until he was on it for about 2 months I have no idea. He is much more hyper off of it, but the tics haven't really come back at this point. He still has some minor ones and some OCD like behavior, like running back and touching something as he makes his way across a room or tapping on each piece of furniture he walks by. Just like everything else with him, that stuff tends to come and go all on its own. He's a very confusing kid.

Since the children's hospital we have been going to since 2.5 refuses to consider anything other than asd and won't consider adhd as a separate diagnosis (and was not helpful with the Tenex situation) we are doing the reevaluation at a new place. I need to figure out what is really going on with DS so that we can treat it properly.

There is family history of ADHD on both sides and DS pretty much has all of the symptoms, except short attention span. I ask him to wash his hands before dinner and he goes into the bathroom, but instead of washing up, he uses the toilet. I ask him to get on his shoes and coat and he shows up at the door with his coat on, but not his shoes. I'm sure he's hearing what I am saying, it just seems to get all messed up in his head. He is always running and climbing and jumping. He is very loud, if reminded to whisper at the library he is able to lower his voice, but by the end of the sentence he is yelling again. If I shush him the whole time he speaks he is able to stay at a lower volume.

He's a very friendly and nice kid though. He loves to be helpful and make things for me. He also likes to annoy others and often does not follow the rules, climbing bookshelves at the library, running away and hiding when it's time to do a non-preferred activity, screaming and bossing people around, etc. He's like that nursery rhyme:

There was a little girl, who had a little curl
Right in the middle of her forehead,
And when she was good, she was very, very good,
But when she was bad she was horrid.

But, back to academics... I don't think DS spells well out loud either. He is able to write things phonetically, but doesn't seem to pick up on the proper spellings. He can spell a few common words like the, of, what, etc. But today he asked for help with pole and then, and he only wrote 2 short sentences today (and likely all of the rest of the words were in the reading text). He tends to miss the vowels when he sounds things out, like spidrs for spiders. He knows how to spell ing and ed and that he needs to add an e to the end to change to the long vowel. He just doesn't seem to pick up on spelling by reading like it seems many kids do. And he has no confidence whatsoever. I can' spell well either, so I am probably not a great spelling teacher.

Answering your questions in order:

Our curriculum is about the same. I dropped from 4th to 2nd grade when he started having trouble to rebuild our school relationship, but it did not help, he still complained it was too hard, despite having mastered the same material 2 years earlier.

I still try to pick books he likes, but I had to stop Magic Tree House because I did not feel the book on the civil war was appropriate for him at 5 and he refused to continue after skipping a book. But we have bought and checked out lots of level 3 and 4 readers as well as chapter books in his area of interest and I do require him to read either 1 chapter or one leveled reader a day as part of our curriculum. He has not complained much in recent weeks, but his speed is still pretty slow.

Our family life is by no means perfect, but nothing significant has changed. No moves or new family members or anything.

I have made changes to the schedule, but more as a reaction to the problems. Over the summer DS was getting up in the am and independently completing his daily work. I had found this worked best for us as he was difficult with me, but on his own the goofing off and annoying behavior just made his work take longer and didn't cause conflict with me anymore. When he stopped getting anything done I tried lots of stuff. Dropping to a very light schedule, working with him on everything, answering all of the questions for him and expecting him only to discuss the answers with me, etc. Nothing helped. After we stopped the Tenex I tried a schedule where we each picked 10 items and alternated them throughout the day and that was working well. Now he is back to doing all 10 of my items first thing in the morning and is very cooperative with it (not all academic items, also has his daily chores on it and fun activities like family games). We do the work together and have fun. I tend to be the type to try things until I find what works, and what works around here tends to change, so we tend to have a lot of schedule changes I guess, but more in reaction to problems.

His sleep is pretty good for the most part. Last night he woke around 2 am and came into bed with me, but he fell back asleep quickly. Some days he wakes up really early and is cranky that day. Overall he sleeps between 9 and 10 hours a night, usually without waking.

Health was an issue in November, he was really stuffed up and couldn't breath well for months (but no discharge, just stuffiness). This cleared up when we discontinued Tenex, which could have been a coincidence.

The only activity he has each week is swimming, which he started in January and he loves it.

He definitely grew a lot this winter. He looks so much older now and went from a very short kid to an almost average kid. A year ago he was wearing 3t and now he's in size 5, so a lot of growing and most of it over the winter months!

OK, I think I responded to everything Clearly I would type forever if it offered some chance of someone noticing something that could help us out. He actually did get accepted into the private gifted school we had the testing done for and now I'm so worried about all of this all over again. DS will need to be able to not only behave, but also keep up academically at a really awesome school. They offer a very individualized education, but I know DS will not be happy to not be the best at everything. He will of course have to get used to that in life, but I know that if everyone is reading fast and he is reading slow he will be very upset about it. Honestly, with this kid you would think that he could die from making a mistake the way he carries on about little things. And god forbid we ask him to do something that he isn't confident that he can do. I can't even get him to sing unless I make him do it to get his desert, he doesn't think he's good at it and he's afraid he will forget the words. I just make him do it because I love the joyful sound of singing children... I try to pretend my son is doing it because he likes to, not because I'm forcing him. I wish he could just be happy and enjoy his childhood.

Whew! Thanks for all the detail!

Beginning from the easy stuff: I would not be at all surprised if there were a dysgraphic element involved, based on what you've said about fine motor tasks and spelling. Given that he does not spell well orally, either, it may be that there is also a dyslexic quality to this. The early reading profile you describe could well have resulted from memorizing words by sight, sufficient to make it through most easy readers and short chapter books. In the absence of efficient phonetic/morphological decoding skills, his reading probably comes to a screeching halt every time he encounters an unfamiliar word, that he has to decode, which is probably why he reads so slowly. Even so, with the exceptional working memory found on his cognitive testing, this would actually be a manageable way to read, up to a point. It may be that he has now reached that point. Your curriculum (prior to backing up) expected him to read at a level where decoding was not expected to be a task in itself, but a tool for comprehension. The combination of labor-intensive reading from memory, poor phonetic decoding, and higher-level comprehension may have tipped the balance in terms of reading being manageable anymore.

Based purely on what you've reported, I think this would be my best guess. Of course, for better data and diagnosis, I would suggest having a full evaluation, including achievement testing, beyond the cognitive testing you had done for school entry. It is also possible, as I've mentioned to a few other parents in related situations, that he's developed bad habits related to asynchrony, and that he simply needs to be re-taught phonetic decoding in a systematic way, at which time he will self-correct to the less labor-intensive approach to reading (if my hypothesis about his reading is correct). In that case, a few months with a systematic phonemic awareness curriculum (such as All About Reading, Logic of English, Lexia, or Reading Horizons) might be enough to get him back on track.

Harder stuff: Clearly, you are dealing with a bunch of other complexities, which can certainly affect concentration, mood, and compliance/motivation. For example, sometimes focusing on inhibiting tics leaves to little attention and mental energy for other tasks. Continuing to sort that out with his health care team definitely is important. It may be that you will be in the situation of making periodic changes for some time to come.

ADHD: the core deficits of ADHD are attentional dysregulation and poor inhibition (impulse control). It doesn't necessarily present as a short attention span; some have unusually long attention spans, but difficulty shifting appropriately. Again, for a better read on this, a comprehensive evaluation would make sense, since many different neurological or health conditions can manifest as they same behaviors. Kids have a relatively limited repertoire for communicating that "something's not working smoothly". So lots of things look like inattention, distractibility, hyperactivity, but may have very different causes.

Other: growth spurts can really make kids feel uncomfortable in their own skin, which can affect everything else. Thinking about the difficulty tracking, has that been investigated (visual tracking/convergence problems)?

I don't have any good answers, but just wanted to say that I have a child who is kind of ADHD/ASD...ish (also very oppositional) and she has these kind of weird up and down periods like you describe. I find it very puzzling, and it's been this way since she was quite little. Although specifics are different, I found myself relating on some gut level to you and what you wrote. Oddly enough, my other child, who does not have those concerns, also had a strange regression period last year that concerned us during a time when his health was a little wonky. Now all is fine. I'm not at all saying there's nothing here to look at, btw, just that I know the feelings you are experiencing and wanted to send you a virtual "I feel for you."

I don't have anything to add re: the reading. But I can tell you that you need an entirely different manual for a TS child. If you haven't watched this yet, this is excellent. Please do not be swayed by how long it is, it is well worth watching.

http://tourette.org/ZNewDg2012_1/GettingStarted_1.html

Thanks so much everyone

To AEH:

I don't really know a whole lot about dysgraphia, but DS has always done quite well on fine motor tests, generally scoring a few years above age on some of the items. The only area of weakness has been upper arm related and seems to be much better since starting swimming lessons. Using fine motor toys like K'nex and lego is not a problem and he was able to use toys designed for 3 year olds or even older at 18 months, such as jigsaw puzzles and various toys designed to be disassembled and reassembled. His pencil grip is also textbook... no thanks to me, I wouldn't even begin to know how to tell someone to hold a pencil!

He has had some gross motor delays, but only in certain areas. He sat, stood, and walked early, crawled at I think a pretty typical 8 months, etc. But despite being an excellent runner and very motivated climber, he was not jumping at 2 as expected. When he was still not jumping at 3 we started PT. We did PT for about 2 years, focused first on learning to jump and later hopping on one foot, throwing, catching, and pedaling. We quit PT shortly after 5, so about a year ago. Right after we quit he started jumping on one foot and developed interest in throwing and catching and has made good progress over the year. He still has a lot of trouble pedaling, but as we got rid of his old tricycle and replaced it with a scoot bike he no longer gets much practice. He is totally awesome on the scoot bike though, fast and fearless!

I will look into going back to review phonics some more. Honestly we never really did a lot of phonics instruction, mostly because he resisted it more than other subjects and it never seemed all that important as he was reading so well already. I can see how that might have been a mistake. I know that when I was a kid phonics was introduced in 3rd grade (it was a new subject at the time, at least at my school), so I already knew how to read at that point. Oddly I was terrible at it. I was the top reader in the class and terrible at phonics and spelling (at least that's how I remember it... I was probably more like average, at least if test scores and report cards are anything to go by, but I felt like I was really terrible at those areas.)

I will say that DS does not seem to focus at all on inhibiting tics. I'm not 100% sure he even knows he is doing them most of the time. He has rarely mentioned them, other than to complain that putting his chin on his chest was hurting his neck for instance. He's a sensitive kid and I try to ask him sometimes if there is anything that he feels like he has to do that bothers him and vague questions like that and he just says no every time. But I don't think he has developed any ability to stop ticcing for any period of time. When the tics are bad they can interfere a lot with what he is doing, which is why we decided to try medication, DS was harming himself and tic frequency was almost constant. Luckily without the Tenex he is ticcing a little more, but not too bad. Just sniffing and throat clearing lately and surface slapping every once in awhile. Very manageable.

I can't wait to go to our appointment next week and hopefully get started on the process of figuring out exactly what is going on with DS. Or, at least as exact as this science gets. I'd love to get one of these full neuropsych reviews everyone here talks about, but they are so expensive and I can't find anyplace that does them and accepts our insurance. We paid out of pocket for the IQ test and are going to a developmental psych for the mental health stuff, which is covered by insurance. The gifted school will be giving a placement test, I assume over the summer. Now that DS is 6 is there any testing related to reading/related skills that I could get the district to do? I'm already saving them a ton by homeschooling DS, so hopefully they will be a little extra willing to help out.

I did look into eye docs and the ones who check for the convergence stuff are all pricey and don't accept our insurance. I did take DS to our eye doc in December and he said all looked good, that he is a bit far-sighted, but that is totally normal for his age. DS does read a lot better if he uses his finger to read, but for whatever reason, he seems to be completely against doing so. Sometimes he will allow me to use my finger and I find that the faster I move my finger along, the more smoothly he reads! So then I feel like he really can read faster, but maybe he isn't trying hard enough or something?

Ultramarina:

Thanks you so much for the kids words. If you ever figure out the up and down thing please share the secret! I feel like I have 2 different kids sometimes. One of them so wonderful and the other, well, sometimes I fantasize about packing my bags and disappearing. Today was a great day though and DS even managed to swim about a foot without a flotation device, after jumping in! Great day for us!

LAF:

I watched video 1 of 4. I will watch the rest tomorrow. It was very interesting. It showed me some different ways to think about some of the behaviors, especially the touching things when walking past. I really wish I could find someone willing to treat DS with cognitive-behavioral therapy, but so far no one will try it. They all claim he is too young and play based therapy is age appropriate. He's been getting play based therapies for years and they just haven't helped at all. He has benefitted much more from discussions with me and reading the great series of books that we have on social skills. In play therapy he just runs around and acts goofy. What I have seen of the video so far has motivated me to call everyone again and bug them to please try cognitive therapy with DS, he is super smart and there is a good chance he will benefit!

OK, and finally, some examples from our work today:

First a word problem in his math book, starting with what he read and then as actually written in the book. I corrected him as he read. He was able to figure out that he needed to multiply, so I know he is understanding what he is reading.

DS: The Jones farm has 24 crows each produce 52 quarts a day. How much quarters are produced each day?

Book: The Jones farm has 24 cows that each produce 52 quarts of milk a day. How many quarts are produced each day altogether?

And in his reading workbook there are 2 columns, one to write what he already knows about a subject and one to fill in what he learned in the text. Here are yesterday's and today's pages:

Topic: Spiders (He told me the sentence he wanted to write, I helped him remember it as he went and spelled most of the words for him, I reminded him to use punctuation)

What do I already know?

Spiders make an equiangular spiral.

They make lines across the spiral.

They dont fly.

Spidrs dont have tals.

They dont move fast.

Spidrs have all different numbrs of eyes.

What did I learn?

Spiders are not insects, they are arachnids.

Arachnids can have more than 8 legs.

Spidrs are carnivores.

Tarantulas can have 12-inch legs.

And today's page he did all on his own as I was "busy" (I sometimes come up with excuses not to help him to see what he is able to do on his own. The books has limited space to write in narrow columns, so I copied this pretty much as close as I could to how he wrote it. Too bad I can't reverse the letters he reversed, but there were quite a few of them. I did help him spell most of the words in the what do I already know section, many words he finds on the page and copies the spelling.)

Topic: Fairies

What do I already know?

They
reFill Your
liFe
FaiRies Fly
FaiRies Are
not reAl
FAiRies Fly
high AnD
loW in Zel
DA FiRies
Are Red
in ZelDA there Are FAiRies

What did I learn?

There Are lots or FA-
mous FAir-
ies in Fic
tion. hum
Ans though-
t BAD FAiries
would hum-
An BABies
rePlAce the
m with FAiry babies

I can tell that DS is understanding what he is reading quite well, but his spelling, handwriting, and ability to remember what he is writing as he is writing it appear to be limiting him. This may be totally age appropriate, I have no idea. I guess that since he has been able to read and write letters for so long I just expect that he would have progressed a bit more. And I definitely thought he would read much faster by now. Oh, and he is clearly into Zelda right now, but he can't actually play video games with controllers. He can use a mouse and touch controls, but he can't seem to wrap his head around directional controls and buttons. He likes to watch his dad play old 80's Nintendo games, which his dad has introduced as his subject of choice: history of video games. So I guess that's DS's favorite subject right now

In terms of obtaining a comprehensive evaluation, I would suggest bringing this to your pediatrician with the current set of concerns. I know you've had trouble finding someone who takes your insurance, but perhaps your pedie may have some better resources, knowing that you have very specific and noticeable concerns about his development, including regression, challenges managing his medication, ADHD-ish concerns (quite often co-morbid with TS) (and you're not just looking for an IQ to confirm giftedness). I see he has a Dx of Tourette's. Is he being followed by a neurologist? That may be another referral source. In fact, a neuropsych who has worked with your DS's neurologist may be preferred, as their experiences with TS may help. I think your best bet is probably to push for a referral to the local or regional children's hospital, which almost certainly has staff neuropsychologists. And is highly likely to take your insurance, if you can get a prior authorization.

And if you can't get anywhere with the medical route (which I would prefer, in this case, where he has other neurological issues), then you can request that your local school district evaluate him. You would want to write a letter to the director of special education, listing your academic, motor, and executive function (attention, memory) concerns, and requesting that a comprehensive psychoeducational evaluation be conducted. They must respond to you in writing within a specified period (usually 1-2 weeks, in most states), with either a letter stating why they decline to act (probably not, in your case, since they have no data to say he doesn't need it), or a proposed evaluation, which should include cognitive, academic, OT (in this case), and maybe EF (memory, attentional/behavioral rating scales) assessments. Should you receive that, and choose to consent to it, you'll want to share his recent cognitive testing with them, so they don't duplicate that testing (which would be a waste of time, and also invalid, if they used the same test). If the consent form doesn't include everything you want, you can write it on, and the district will have to consider it (usually they'll just do it, if it's something they have; one way or the other, someone will probably call you to clarify, if you write additional assessments on). If it includes things you don't want, you can sign partial consent, and indicate which parts you want/don't want.

OK, this is all very useful. I love our pediatric practice, but as they are part of the same children's hospital as the dev peds they always just refer us to them. Which is at least a 6 week wait, and that's if we claim it's an emergency. And they are the same ones who refuse to reevaluate. They did give him the TS diagnosis, pretty much based off of their observations, my reports, and the fact that his father has tics and his father's brother has TS. They did not even want to make the diagnosis official, but I asked them to in case it might help us get services for it specifically. They are entirely unconcerned about the tics (even though ds had some that were causing him pain and one where he was smacking his forehead frequently) and when I asked about a neurologist they said they didn't think it was necessary. They definitely have neurologists though. And yes, they accept our insurance. I trust your expert opinion here and if you think that the medical route is the way to go I will just go ahead and bug the pedi to refer us to a neurologist (leaving the dev peds out of the loop) and see where we can get from there. I guess this whole angle never really occurred to me.

Of course today at the library DS grabbed a Cork and Fuzz book (not high literature, I know) and read right through it without stopping more than 3 or 4 times. He still omitted a lot of words and skipped some lines, but he read smoothly and expressively, more like he used to. It was entirely quiet at the time, the library had just opened and we were the only ones there. DS also found a hiding spot to read in, no idea why, but we had to stay in the hiding spot the whole time. The book took maybe 10 minutes, whereas at home it would have taken half an hour. DS is an only child and my house is very quiet, so I don't think there are any distractions here. I've decided to do his school work at the library once a week to get him used to working in an environment a little more similar to school, other kids, some distractions, larger room, etc. Today we just read the book as I forgot a pencil

He did complain at one point when I was talking to him that he couldn't hear me because someone was singing. I hadn't even noticed until he pointed it out and it was rather far away and faint. That problem isn't going to help him out much at school either, but he has come a really long way in actually telling us what is going on in his head and that is very helpful. This is part of the reason I advocated for written instructions when he was with the IU. Of course they never actually tried written instructions because they didn't believe he could actually, really read. They also insisted loud noises didn't seem to bother him, so there was no problem with sensory processing... well, loud noises don't bother him, he just can't seem hear like others can if there is more than one sound to attend to.

I'm not sure if there is a name for that problem, but if so I would love to know what it might be to help with advocacy. I feel pretty confident that the gifted school will be just fine with the idea of written instructions. I'm still shocked DS got in. Apparently he was amazing at his interview and they just loved him. I'm still wondering if they got him confused with another kid or something, lol. DS is extremely talkative and friendly, but he's also constantly moving and into things. They ended the interview when he got on the table and was jumping on the math worksheet they gave him. I thought for sure he wouldn't get in! He must have been amazing up until that point.

Thanks so much for everything, I will definitely call the pedi tomorrow and push for seeing a neurologist. And I'll update after our reevaluation on Monday. Have a great weekend everyone

Yes, there is a name for that problem. It may be that he has a central auditory processing disorder, as it sounds like he has difficulty with foreground/background auditory discrimination. (But you'll want an actual auditory processing evaluation to properly diagnose that--from an audiologist.) It is not unusual for children with auditory processing disorders to have difficulty with phonetic decoding, as auditory discrimination of the phonemes of language is a necessary prerequisite for acquiring fluent phonetic decoding skills. It's also not unusual for kids with CAP to be misdiagnosed with ADHD (or sometimes to be co-morbid with ADHD), as it can be hard for them to focus and follow directions, since they can't readily identify which speech sounds in their environment are the important ones. CAP diagnosis would definitely need to be from the medical route, as it is a rare school that has the necessary equipment for the evaluation (almost always, it's hospitals).