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Have you had any of your ADD/ADHD kids evaluated for Sleep Problems? - Update


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We just had ds17's sleep intake appointment this morning.  The specialist was so happy that we were checking out sleep problems prior to any ADD medications.  He said that a (I can't remember the percentage but it was a lot) of kids diagnosed with ADD/ADHD actually have sleep disorders.  He said that he then gets them when they are in their 30's and have been on stimulants for 15 years and he's finally able to diagnose the underlying sleep disorder.  We've scheduled a sleep study which may or may not show anything (ie. the intake itself was just an interview with the doctor) but the doctor strongly suspects it will show some things.  

 

Any other experiences with this?  Has it helped your child at all?

 

Update:

 

No apnea, which the doctor didn't think he had anyway.  But . . . surprisingly, no other sleep problems either.  But I do not regret doing the study at all.  Insurance had pre approved the study so is paying for it.  And now the doctor said that we can go ahead with pursuing stimulants with no worry of it interfering with sleep problems.  He did say that we could do melatonin to help him to sleep better.  

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How detailed will the sleep study be?  What specifically will they be checking for and how will they do that?  What are the facilities like?

 

FWIW, my children have not been diagnosed with ADD/ADHD but I strongly suspect DS is and DD might be.  But DD has always struggled HORRIBLY with sleeping.  She couldn't sleep more than a couple of hours at a stretch until she was 3 years old and she still has a hard time staying asleep for long stretches.  She would be up for hours and hours and hours as even a baby.  And DH had cameras in her room from the time she was tiny (techy, paranoid daddy).  We could see her toss and turn in her toddler bed all night long, sometimes violently enough she would flip herself over the railing and land on the carpet.  Thankfully the bed was close to the floor.  Her sleep patterns have improved but they are still pretty bad.

 

Our pediatrician finally had a sleep study done, after years of my saying her sleep patterns were not healthy or normal. She was maybe 7.  Worst possibly way to do a sleep study ever.  I will list a few of the issues....

 

1.  The facility attached a zillion electrodes to her, but didn't tell her a thing about why or what they did or anything which made her immensely uncomfortable and scared.  Not very conducive to sleeping.

2.  The facility was freezing.  Her lips were blue and her teeth were chattering.  Not very conducive to sleeping.

3.  I had to remain with her (and would not have let her sleep there alone at that age anyway) but they had nowhere for me to sleep.  I had a hard metal chair to sit in (also freezing) and no blanket.  

4.  There was no insulation between the walls so all night long we could hear, quite clearly, the guy loudly snoring and the baby periodically screaming and crying just down the hall from us in other rooms.  Not conducive to sleeping.

5.  In the morning they just kicked us out.  No indication of when they would send the results or what they might have found or anything.

6.  When we got the results we were told they were negative.  

 

Negative?  For what?  She hardly slept at all because the environment was NOT set up for actual sleeping and we both stayed awake, utterly miserable, all night long, but what were they actually testing for that would show up as negative since she didn't sleep?  What was negative?

 

 Sleep apnea.  She shows no signs of sleep apnea.  

 

Uh, your kidding right?  That was all they were testing for?  When you said "sleep study" all you had them test for was sleep apnea?  Thank you so much.  I could have told you that.  You mean that was ALL they were testing for?  I ALREADY KNOW SHE DOESN'T HAVE SLEEP APNEA. 

 

Not sure that helps much, but I thought I would share.....

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Doctor feels fairly sure that he does not have sleep apnea.  But they will check for that as part of the study.

 

This study will include the uncomfortable electrodes.  My understanding is that any study they do has to include them because that is what allows them to see the brain waves.  I know first hand how hard it is to sleep with them.  When I had my sleep study done I only had 3 recorded hours of sleep, after they cobbled together all the slight snatches of sleep I had over the night.

 

This study also tests for what is called micro-sleep patterns that will show narcolepsy or other brain wave disorders.  They also look for restless leg syndrome.  

 

They want him to be dropped off at 8 pm.  At 7 am I am to call and see if they want to keep him for the day (likely).  If they keep him for the day, they will have him tested during a series of naps.  I would then get him at 4:30 in the afternoon.

 

My ds is almost an adult and I was tested as an adult so I have no idea how it works for younger kids.  I will not be staying with my 17 year old (though I understand why you would with a young child).  

 

They told me that they would go over the print-out with us immediately though if it is anything like my own sleep study we will the go back in after a couple weeks for the final report after all the data has been compiled into a more complete report.  

 

The rooms were comfortable (we met in one) and were not cold but instead resemble a very nice hotel room.  

 

 

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Sounds like your sleep study experience will be a LOT more productive than ours was.  

 

And I my objection to the eletrodes was in the way they put them all over DD, as a young child, was scary.  No real explanation.  No reassurances.  And I have no idea why they put them on since they apparently only tested for sleep apnea.  Do you need electrodes for that?  I had assumed they were testing for several things.  I was wrong.  What were the electrodes all over her head for if not to study brain wave patterns?

 

Hopefully, this will net better answers for you.  Homeschooling has allowed DD to take cat naps.  It has helped her focus and her mood quite a bit.  I wish we had had a better experience with the sleep study we did.  I think part of her issues with behavior and attitude and focus were from lack of sleep.  Stress over the issues at school due to undiagnosed dyslexia were also part of the problem but it was not the whole picture.

 

Hopefully someone with experiences closer to your situation will respond.  Good luck, Jean.

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Mine doesn't sleep terribly well, but there is nothing obvious going on. He takes melatonin, and it's like magic. We tried it after a trip to a different time zone, and we've kept doing it since (with the ped's approval). I suspect he just can't settle down mentally, which is almost universal in my extended family. We do try to keep things non-stimulating before bed, but he has a long unwind time. So do I--I need about two hours each night to unwind, which doesn't help my productivity level! I suspect my own patterns started when I was little and didn't need much sleep (8 hours a night, at most, by 18 mos. of age, no naps and no grumpiness or anything from lack of sleep). At one point during my preschool years, my parents started putting me to bed early in self-defense so that they could relax. I would lay on the bed forever and ever awake. I think it just set me up for disaster later in life with getting to sleep.

 

My second one is probably ADHD inattentive, but he doesn't need much sleep. We let him stay up a bit; otherwise he has nightmares (I think he lays there thinking of wild imaginative stuff, and it freaks him out). He is actually more restless in his sleep that his older brother that struggles to sleep, but he's rarely tired.

 

Neither of my kids snore, and they don't wake that easily in the middle of the night. I let them wake up naturally in the AM.

 

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We haven't done a sleep study for ADHD but I know that our ENT said that he could "cure" many ADHD kids by removing their tonsils and adenoids................basis was that they were causing sleep apnea and that in turn was causing ADHD like behavior.  It certainly makes sense that sleep issues could mimic ADD/ADHD as either you are too tired to focus clearly or you are hyper  just trying to keep yourself awake.

 

I love to see doctors that look at all possible issues.  Our psychiatrist started my daughter on meds for a mood disorder at 3 but did a lot of medical testing before hand and has continued to check for other medical issues as the years go by as well.

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We haven't done a sleep study for ADHD but I know that our ENT said that he could "cure" many ADHD kids by removing their tonsils and adenoids................basis was that they were causing sleep apnea and that in turn was causing ADHD like behavior.  It certainly makes sense that sleep issues could mimic ADD/ADHD as either you are too tired to focus clearly or you are hyper  just trying to keep yourself awake.

 

I love to see doctors that look at all possible issues.  Our psychiatrist started my daughter on meds for a mood disorder at 3 but did a lot of medical testing before hand and has continued to check for other medical issues as the years go by as well.

One of the things the sleep specialist did today was to check his tonsils.  

 

I like doctors that look at all possible issues too.  That's why I like his pediatrician as well.  I am the one who brought this up, but he agreed that we needed to see if the sleep problems that ds has are causing his symptoms or are simply exacerbating his symptoms.  And either way, we need to see what his sleep problems are and if they are fixable.  

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Evaluation for sleep disorders and subsequent treatment is really standard of care for appropriate management of pediatric ADHD now.  I hope your son's sleep study goes well. 

 

We haven't done a sleep study for ADHD but I know that our ENT said that he could "cure" many ADHD kids by removing their tonsils and adenoids................basis was that they were causing sleep apnea and that in turn was causing ADHD like behavior.  It certainly makes sense that sleep issues could mimic ADD/ADHD as either you are too tired to focus clearly or you are hyper  just trying to keep yourself awake.

 

I love to see doctors that look at all possible issues.  Our psychiatrist started my daughter on meds for a mood disorder at 3 but did a lot of medical testing before hand and has continued to check for other medical issues as the years go by as well.

 

There is a strong association between sleep disorders (most commonly Obstructive Sleep Apnea, or OSA) and ADHD.  Among children, a significant portion of OSA is due to obstruction due to tonsillar hypertrophy.  In many of these children a T&A will be completely curative.  In some children the OSA persists even after surgery and then other options (like CPAP) should be explored. So yeah, if the ADHD is completely due to the OSA which is completely due to tonsillar hypertrophy then your ENT can be a hero.  In reality, I think in many kids with ADHD and concurrent OSA the sleep problems make the ADHD worse but aren't the sole etiology of the illness.  Regardless, untreated OSA can lead to other problems (including pulmonary hypertension) so it is important to address it even other steps still need to be taken to address the ADHD post operatively.

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How detailed will the sleep study be? What specifically will they be checking for and how will they do that? What are the facilities like?

 

FWIW, my children have not been diagnosed with ADD/ADHD but I strongly suspect DS is and DD might be. But DD has always struggled HORRIBLY with sleeping. She couldn't sleep more than a couple of hours at a stretch until she was 3 years old and she still has a hard time staying asleep for long stretches. She would be up for hours and hours and hours as even a baby. And DH had cameras in her room from the time she was tiny (techy, paranoid daddy). We could see her toss and turn in her toddler bed all night long, sometimes violently enough she would flip herself over the railing and land on the carpet. Thankfully the bed was close to the floor. Her sleep patterns have improved but they are still pretty bad.

 

Our pediatrician finally had a sleep study done, after years of my saying her sleep patterns were not healthy or normal. She was maybe 7. Worst possibly way to do a sleep study ever. I will list a few of the issues....

 

1. The facility attached a zillion electrodes to her, which made her immensely uncomfortable and scared. Not very conducive to sleeping.

2. The facility was freezing. Her lips were blue and her teeth were chattering. Not very conducive to sleeping.

3. I had to remain with her (and would not have let her sleep there alone at that age anyway) but they had nowhere for me to sleep. I had a hard metal chair to sit in (also freezing) and no blanket.

4. There was no insulation between the walls so all night long we could hear, quite clearly, the guy loudly snoring and the baby periodically screaming and crying just down the hall from us in other rooms. Not conducive to sleeping.

5. In the morning they just kicked us out. No indication of when they would send the results or what they might have found or anything.

6. When we got the results we were told they were negative.

 

Negative? For what? She hardly slept at all because the environment was NOT set up for actual sleeping and we both stayed awake, utterly miserable, all night long, but what were they actually testing for that would show up as negative since she didn't sleep? What was negative?

 

Sleep apnea. She shows no signs of sleep apnea.

 

Uh, your kidding right? That was all they were testing for? When you said "sleep study" all you had them test for was sleep apnea? Thank you so much. I could have told you that. You mean that was ALL they were testing for? I ALREADY KNOW SHE DOESN'T HAVE SLEEP APNEA.

 

Not sure that helps much, but I thought I would share.....

 

My dd11 had a sleep study at the beginning of the year. The above is exactly how our experience was, all the way down to the results (or lack thereof) and how they were given. Ugh. I feel your pain OneStep. Big fat waste of time and money.

Fwiw- Dd11 was diagnosed with ADHD inattentive a few weeks ago...and STILL has horrible sleeping patterns.

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My dd11 had a sleep study at the beginning of the year. The above is exactly how our experience was, all the way down to the results (or lack thereof) and how they were given. Ugh. I feel your pain OneStep. Big fat waste of time and money.

Fwiw- Dd11 was diagnosed with ADHD inattentive a few weeks ago...and STILL has horrible sleeping patterns.

:grouphug:  :grouphug:  :grouphug:

 

Well at least we're not alone.  :)

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Evaluation for sleep disorders and subsequent treatment is really standard of care for appropriate management of pediatric ADHD now.  I hope your son's sleep study goes well. 

 

 

There is a strong association between sleep disorders (most commonly Obstructive Sleep Apnea, or OSA) and ADHD.  Among children, a significant portion of OSA is due to obstruction due to tonsillar hypertrophy.  In many of these children a T&A will be completely curative.  In some children the OSA persists even after surgery and then other options (like CPAP) should be explored. So yeah, if the ADHD is completely due to the OSA which is completely due to tonsillar hypertrophy then your ENT can be a hero.  In reality, I think in many kids with ADHD and concurrent OSA the sleep problems make the ADHD worse but aren't the sole etiology of the illness.  Regardless, untreated OSA can lead to other problems (including pulmonary hypertension) so it is important to address it even other steps still need to be taken to address the ADHD post operatively.

 

SOOOOO..........just a weird rambling question here.............could a part of the increase in ADD/ADHD we are seeing due in part to the fact that in generations past almost ALL kids had their tonsils removed in early childhood and now it is much more uncommon to do so?

 

Along those lines............in past generations everyone got a nice big dose of cod liver oil every day (like it or not).................now, that is very rare..........but they are finding out that the Omega 3s in fish oils are so helpful for brain function and can be very helpful for ADHD.

 

Just my musings on a cold, snowy fall day here.

 

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My youngest had a sleep study and was dx with severe sleep apnea. He had his adenoids and tonsils removed, and it has NOT helped his ADHD symptoms.

 

We still have to go in for a repeat sleep study to see if his apnea has resolved; if it hasn't then he will have to use a CPAP machine. There's a chance that he needs a CPAP to sleep well, and once he sleeps well then his symptoms will improve, but based on the family history of ADHD and his response to stimulants, I believe that he's going to get a true ADHD diagnosis regardless. He already takes Clonidine to help him unwind since he is now taking a stimulant (Vyvanse) during the day.

 

 

 

 

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SOOOOO..........just a weird rambling question here.............could a part of the increase in ADD/ADHD we are seeing due in part to the fact that in generations past almost ALL kids had their tonsils removed in early childhood and now it is much more uncommon to do so?

 

Along those lines............in past generations everyone got a nice big dose of cod liver oil every day (like it or not).................now, that is very rare..........but they are finding out that the Omega 3s in fish oils are so helpful for brain function and can be very helpful for ADHD.

 

Just my musings on a cold, snowy fall day here.

 

 

I suspect some of the increase in ADHD/ADD comes from our increased understanding of what it is (and isn't) so kids are getting diagnosed who have slipped through the cracks in the past.  We also have more options for treatment so I think we are seeing some parents make more effort to pursue a diagnosis when in the past there wasn't as much incentive because there weren't as many options to intervene.  

 

As far as T&As I'm young enough that T&As were only done selectively during my childhood and I made it through childhood with my tonsils intact. This is evidence based in the studies that have shown that there is minimal benefit in terms of preventing tonsillitis and strep pharyngitis with T&A.  When this is weighed against the potential perioperative complications with T&As then for many kids the risk benefit pendulum swings against indiscriminate removal.  There have also been some studies that have suggested an increased risk of certain cancers in kids who had T&As but some of these studies are conflicting so there isn't a clear perspective on this from the literature. In contrast, when you are looking at children who have documented OSA and tonsillar hypertrophy, or who have had recurrent tonsillar abscesses then pendulum swings a little differently.

 

I guess I'm also young enough that I escaped cod liver oil.  I will agree that there has been some support in the literature for benefits of omega fatty acids with some health conditions.  There are also other conditions that may be made worse by omegas and the potential for side effects and or toxicity (and in the case of fish oil sources there is also the concern for concurrent vitamin A &D toxicity) with excessive doses. For these reasons, I would generally think that supplementation should be decided on an individual case by case basis with good consideration to diet, other medical issues, and current medications.

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Oldest has had a sleep study, not because o his adhd but due to other issues, he has no sleep issues.  It was hard to get them to be willing to do a sleep study, the ped refused to refer us saying it wasn't necessary.  We ended up being referred to an urologist who then referred to an ENT who then referred for a sleep study.  ds11 has not had one either for similar reasons, a referral is needed and the dr's don't feel he needs one done so no referral given 

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My ADHD (and spectrum) son did have moderate sleep apnea. He's cured though, including a follow up sleep study to check, and still has the same level of ADHD symptoms. He does need less sleep than he did before fixing the apnea.

 

I had apnea without snoring or obvious risk factors, so it's possible. I had a narcolepsy study at one point too. It sounds like they have a really thorough work up planned for him.

 

I agree that no one sleeps well during a sleep study. I know I don't, and I've never met anyone who did. I'm glad you're getting him checked.

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We haven't done a sleep study for ADHD but I know that our ENT said that he could "cure" many ADHD kids by removing their tonsils and adenoids................basis was that they were causing sleep apnea and that in turn was causing ADHD like behavior.  It certainly makes sense that sleep issues could mimic ADD/ADHD as either you are too tired to focus clearly or you are hyper  just trying to keep yourself awake.

 

I love to see doctors that look at all possible issues.  Our psychiatrist started my daughter on meds for a mood disorder at 3 but did a lot of medical testing before hand and has continued to check for other medical issues as the years go by as well.

 

Haven't, but I've had the thought that we should consider one. I do suspect my son might have OSA.

 

 

 Worst possibly way to do a sleep study ever.  I will list a few of the issues....

 

1.  The facility attached a zillion electrodes to her, but didn't tell her a thing about why or what they did or anything which made her immensely uncomfortable and scared.  Not very conducive to sleeping.

2.  The facility was freezing.  Her lips were blue and her teeth were chattering.  Not very conducive to sleeping.

 

 

4.  There was no insulation between the walls so all night long we could hear, quite clearly, the guy loudly snoring and the baby periodically screaming and crying just down the hall from us in other rooms.  Not conducive to sleeping.

 

 

Your poor daughter! That's awful! My husband's sleep study had the above noted things in common, but at least he was a grown man (and in his case, they DID test many things, not just OSA--as you said, the electrodes are there!).  But it was ridiculous how cold it was. 

 

We haven't done a sleep study for ADHD but I know that our ENT said that he could "cure" many ADHD kids by removing their tonsils and adenoids................basis was that they were causing sleep apnea and that in turn was causing ADHD like behavior. 

 

This concerns me a bit, and I would definitely get a 2nd opinion before doing a surgery. Maybe he was just speaking hopefully/generally, but tonsils are not the only cause of OSA, and surgery isn't always helpful. In my husband's case, they were able to identify up front the structural reasons why surgery would not help him (had to do with the length and size of his soft palate). I know tonsillectomies used to be par for the course--but tonsils are part of the immune system and I'd want a reasonable assurance that surgery was going to correct the issue (and some statistics on what percent it helps and info on why it doesn't help others, so you can make an informed decision.)

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This concerns me a bit, and I would definitely get a 2nd opinion before doing a surgery. Maybe he was just speaking hopefully/generally, but tonsils are not the only cause of OSA, and surgery isn't always helpful. In my husband's case, they were able to identify up front the structural reasons why surgery would not help him (had to do with the length and size of his soft palate). I know tonsillectomies used to be par for the course--but tonsils are part of the immune system and I'd want a reasonable assurance that surgery was going to correct the issue (and some statistics on what percent it helps and info on why it doesn't help others, so you can make an informed decision.)

 

I wasn't clear but the ENT wasn't just doing the T&A for ADHD, but rather in kids that had medical issues that indicated their removal and then afterwards their ADHD like behavior was much better.  He was very conservative with surgery.

 

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My son with ADHD is a very, very light sleeper and always has been. On nights when he sleeps well, he functions close to normally. We have not medicated him, but I have not considered a sleep study, either, I guess because I didn't know of their availability for kids. I was always thinking I should try a sleep medication for him, rather than an ADHD med, but I never have.

 

Thanks for sharing. Seems like more doctors should be suggesting this.

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  • 2 weeks later...

I would recommend magnesium for sleep. It is my first recommendation for ADHD anyway since it is calming. Don't expect a serum magnesium test to show if it is low though. Magnesium is an intracellular mineral and serum is an extracellular fluid. I just give it. If it helps, it was needed.

 

Do not take magnesium oxide. It is not harmful, but it is not well enough absorbed. Mag malate, mag glycinate and mag citrate are better sources. I give my 3 1/2 year old 300mg per day of powdered mag glycinate and it effects his behavior dramatically.

 

He does not have a diagnosis of anything though.

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Haven't, but I've had the thought that we should consider one. I do suspect my son might have OSA.

 

 

 

Your poor daughter! That's awful! My husband's sleep study had the above noted things in common, but at least he was a grown man (and in his case, they DID test many things, not just OSA--as you said, the electrodes are there!).  But it was ridiculous how cold it was. 

 

 

This concerns me a bit, and I would definitely get a 2nd opinion before doing a surgery. Maybe he was just speaking hopefully/generally, but tonsils are not the only cause of OSA, and surgery isn't always helpful. In my husband's case, they were able to identify up front the structural reasons why surgery would not help him (had to do with the length and size of his soft palate). I know tonsillectomies used to be par for the course--but tonsils are part of the immune system and I'd want a reasonable assurance that surgery was going to correct the issue (and some statistics on what percent it helps and info on why it doesn't help others, so you can make an informed decision.)

 

It's actually very effective for children with sleep apnea. It is always the first treatment. I think the ENT said it would cure upwards of 90%. I found it may be a bit lower when I researched, but most of those kids appear to also have obstruction around the voice box if they look there as well. My son had that lower obstruction removed as well. It cured his moderate, bordering severe, sleep apnea. He had no apnea in his follow up study. He's not at all unusual in getting a complete resolution. But surgery in adults with sleep apnea is not nearly as successful, and wouldn't generally be suggested.

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  • 2 weeks later...

Update:


 


No apnea, which the doctor didn't think he had anyway.  But . . . surprisingly, no other sleep problems either.  But I do not regret doing the study at all.  Insurance had pre approved the study so is paying for it.  And now the doctor said that we can go ahead with pursuing stimulants with no worry of it interfering with sleep problems.  He did say that we could do melatonin to help him to sleep better.  


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P.S.  Part of me is sighing because there is no "easy" explanation for his dopiness!  

 

I think the ADHD plus ASD in our house is just glitchy--one day you have an expert in all kinds of difficult things, and another day, the expert can't follow "simple" directions.  :grouphug:  :grouphug: about the "dopiness" and good luck with trying other interventions. 

 

I also find Dierdre Lovecky's book Different Minds to be really helpful. I don't have a copy yet (borrowed from the library), but it's really good. When you look at the comparisons of different presentations (gifted with ADHD, ASD, both, etc.), it is really helpful for seeing patterns of behavior and thinking and sort of exposing the holes for what they are (rather than having to constantly guess why xyz is a problem). 

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I haven't read the whole thing, but one chapter in the book really helped me put words to the troubles my son has when we needed to describe them to the IEP team. I am not sure what chapter it is, but it goes item by item through a bunch of skills and describes the likely difficulties. 

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