Just had Neurodevelopmental Ped evaluation, and need encouragement.

[nature girl]

We had a meeting today with a neurodevelopmental pediatrician for my 5yo DD. From observing Anna the doctor said she's quite sure she has ADHD, moderate to severe. She also said it's more complex than that, because she has extremely poor frustration tolerance, especially when out of her comfort zone, and is overly emotional, can't tolerate any load on her emotions. (We noticed this at home of course, but didn't realize how very outside normal her reactions are.) She has a fixation on food, almost an obsession, is always hungry, and that's also a sign of neurological issues. She also noticed that although she joins in conversations appropriately for the most part, some of Anna's verbalizations aren't relevant to the conversation they were having, like she's on a different plane. The doctor doesn't think she's on the spectrum, but in her words, "It's a very complex case," and she said fetal drug/alcohol exposure (we adopted her at birth) could very well have been a factor in the brain issues.
 

We have an all-day appointment with a neurodevelopmental psych at the end of August, to get a more detailed evaluation and a path forward.

 

I knew what the diagnosis would probably be, but it's so horrible to hear it stated authoritatively from a doctor's mouth, with such certainty. I'm sure many of you know what it's like. My heart is broken, and I keep imagining Anna's tiny body being assaulted by toxins, the harm it's probably caused her...I know I have to keep reminding myself that she's such an amazing kid in so many ways, so sweet and loving and spirited and smart and caring about everybody and everything, she's going to do good things in the world, no matter what. (Crying as I write this.) It's just going to take me a long time to accept and come to terms with, since she always seemed neurotypical in many ways. But over the past year her behavior has just become more and more erratic, and it became obvious that something was going on besides just excess energy and defiance.

 

Schooling her this year has been so very difficult, I don't know if I'll be able to continue. I find myself getting frustrated, and although I never take it out on her I always feel so stressed and unhappy and find myself so tempted to just give up. Is it possible for a kid with moderate to severe ADHD to succeed and be happy in school without drugs? Or is it in her best interests to keep her home? I know nobody can really answer that, but I'd love to hear opinions. The doctor did suggest meeting with the school board for an IEP, to see what they might be able to do, in case we go that route.

 

And if anybody has any success stories they can share, of ADHD kids who grow up happy, successful and fulfilled with life, whether HS or PS, I really, really need those right now.

 

 

 

[texasmama]

:grouphug:  :grouphug:  :grouphug:

[prairiewindmomma]

Hugs. She's the same kid you had before you saw the labels. She is still sweet and loving and spiritual and caring.....

 

FWIW, my oldest is not an adult yet, but he's gone from not being able to follow multistep directions to essay writing. (He is working on WWS2 on the couch across from me.) He is an amazing teen and a huge blessing to our family.  We have both learned to work with each other and accept each other for what we are. He knows when to hand me chocolate and back away (and check his pillbox to make sure he took his meds), and I know that he is a sweet sincere kid who is trying hard and doing surprisingly well.  

 

Give yourself some time to wrap your brain around this.  You don't have to make all of the decisions right now. Make some cookies. Color. Hang out at the pool. It'll be ok. She is 5 and you have many many years until she is an adult. 

 

 

[PeterPan]

I'm on my phone so I'll be brief, but why no meds for the ADHD? Are they contracted?

[PeterPan]

Adding, so sorry it's rough. Go eat a half gallon of ice cream. That's what I do. Sigh.

[nature girl]

They're not contraindicated, I just hate the idea of medicating her so young. If it turns out to be necessary in 4 or 5 years, then I'd reconsider, I know they can be miraculous for some, but I've heard/read too many horror stories that terrify me. She's such a happy, spirited kid, and I don't want to mess with that spark at this age.

[prairiewindmomma]

Anna's Mom, fwiw.....I regret I waited so long to medicate. I let the horror stories scare me for much too long.  I'm not sharing that to pressure you into medicating now, just that I think I would've found it helpful to hear helpful medication stories earlier on.  We spent a whole lot of years extremely frustrated with each other and trying any number of things (fish oil, exercise, meditation, herbs, etc.) and spinning our wheels.  The spark has not gone at all; it has helped him be able to interact appropriately with the world around him. He describes it as all of the buzzing and chattering noises around him get turned off and he can finally relax and pay attention to the things that he wants to.

[Ottakee]

Anna's Mom, fwiw.....I regret I waited so long to medicate. I let the horror stories scare me for much too long.  I'm not sharing that to pressure you into medicating now, just that I think I would've found it helpful to hear helpful medication stories earlier on.  We spent a whole lot of years extremely frustrated with each other and trying any number of things (fish oil, exercise, meditation, herbs, etc.) and spinning our wheels.  The spark has not gone at all; it has helped him be able to interact appropriately with the world around him. He describes it as all of the buzzing and chattering noises around him get turned off and he can finally relax and pay attention to the things that he wants to.

That was our experience as well with one of ours.

 

One of ours we started on meds right near her 3rd birthday and we have said over and over again that "if we had known then what we know now, we would have started meds at 18 months old"..........yes, seriously, we would have started med with a 1 year old.  It has made about 90% of the difference for her and now she can focus on learning and and the parenting stuff we needed to do (she is adopted).

 

I have one with fetal alcohol and 2 with complex mitochondrial disorders which also have mental health issues related to that.

[Heathermomster]

Maybe consider getting her to an OT for evals to check developmental motor (aka retained reflexes) and sensory with an SIPT qualified OT.  Your DD is very young, and you have options. 

[Beaniemom]

:grouphug: :grouphug:

 

[PeterPan]

They're not contraindicated, I just hate the idea of medicating her so young. If it turns out to be necessary in 4 or 5 years, then I'd reconsider, I know they can be miraculous for some, but I've heard/read too many horror stories that terrify me. She's such a happy, spirited kid, and I don't want to mess with that spark at this age.

I don't want to contradict you, because I've done the same thing.  I have two kids (age 16 and 6), both with ADHD labels, neither on meds.  I GET you on the spark thing.  However when I read your post, my first thought was that I'd get that OT eval scheduled pronto and I'd get that kid on meds.  

 

What I'm being told is that the kids who go flat on meds were already on the spectrum, that it made it more obvious rather than causing it.  I don't know that as a medical statement.  I'm just saying that's what I'm being told as I talk with people.  I do know adults on meds who are plenty sparky and not flat, so it is possible.

 

So I'm with you not loving meds, but you've got a lot going on.  Sometimes, when a dc's situation is complex, the meds are about helping them be what they can be.  When you've got so many things going on (the possible FASD, etc.), at some point you're telling her to work WAY HARDER than anybody else to be good, appropriate, and as expected, and that's really not fair to a kid.  She's going to have enough challenges even with the meds.  I'm not in your shoes, but I'm saying as someone who feels the same way you do about it and have DONE it for 16 years, I would put the dc on meds in a heartbeat.  ADHD is hard enough without the additional complicating issues.  It's not fair to her and it's not fair to you.  Bring good, appropriate behavior within her reach.  

[nature girl]

Thanks for all of your thoughts, you've given me a lot to ponder...Of course I only want to do what's best for her, it's just so hard trying to figure out what that is.

 

OhE, can I ask why you chose not to medicate? We're going to start additional treatment as soon as we get results from the neuropsych and a better sense of tools that can help her. My instinct says to at least try these methods first, and see if they start to make things more manageable before jumping on the med train. I'm also trying diet strategies, to see if they make any difference. But as I said earlier, if it becomes obvious that she needs more help I'm not opposed to medication per se.

 

I know that I need to find a way to adjust schooling...Maybe I should start another post about that, but I want to troll around more on this board first because I'm sure it's been covered many times. Her biggest struggles are hating to feel like she's "failing" at anything, frustration with herself and the work when it gets hard. At home I don't even see much hyperactivity, it's mostly the behavioral issues that make schooling so hard, so I have to find ways to help her manage that.

 

At this point she's able to read to me for a half hour...She'll take little breaks to talk about the story or pictures, but that's fine with me, she's taken great leaps in fluency and she gets it done because she feels proud of herself, which is SO important in keeping her motivated. Math is a little more of a challenge, I was using RS which worked wonderfully for a year, but then she started getting overwhelmed and shutting down. She does well with math on the iPad though, so maybe I just need to adjust my expectations of what an "ideal" math education looks like. Other subjects will be primarily interest led at this point. (We're doing a cicada study now because that's her interest-du-jour, I'm incorporating reading and writing, maybe I'll find a way to incorporate math as well...) So I hopefully CAN do this, again I just need to adjust my expectations of what a school day looks like and what my goals for her education are.

[PeterPan]

Absolutely you can ask!  First (the main reason), my dh is vehemently opposed.  It's where he's coming from on a lot of levels, and it's something we have been talking through.  This is something I *can* override, and we're currently going through all the options that remain (neurofeedback, cogmed) to see if we can get her functional.  These are hard choices people make.  She *is* functional in certain settings and she really struggles in others.  In reality, she should be on meds.  Even sitting through a 4 hour driver's ed class right now leaves her wiped out from the strain of focusing.  Doing things that normal kids can do with ease wear her out and ruin her life.  And that's only ADHD, with none of the additional complications your dd has!!!

 

Other reasons?  We were able to keep things acceptably in check in the younger years with diet, activity, and lots of modifications.  Has she accomplished as much as she would have on meds?  I can't say that's the case.  It was a choice and we live with it.  There are pros and cons to everything.  But it's straight ADHD, nothing else.  Honestly, just the ADHD is challenging enough, I cannot FATHOM adding the FASD to that and not adding the meds.  SHE (my dd) doesn't like how she is now, at least for school work.  She likes it when she's doing other things, because she harnesses it.  But for school?  Horrible.  She doesn't like that she wears out trying to do things other kids can do easily, without blinking an eye.  And someone can say just chunk into small chunks, modify, blah blah, but for bright kids the world DOESN'T WORK LIKE THAT.  College is looming, and it is the way it is.  Drivers ed is as idiotically easy as it gets, and she can't even sit through that 4 hours without sleeping the entire next day.  As I said, the ONLY reason she's not on meds at this point is because we haven't completed these other things I want to do to be able to say to my dh that I've done EVERYTHING that can be done.  I don't have a polite way to say how adamant his opposition is to meds, but let's just say it really is the nuclear option I'd be pulling.

 

Other reasons?  She had some hypoglycemia as a child, and I had that.  It's due to adrenals, and I'm not crazy about the idea of putting her on stimulant meds that could affect adrenals and fatigue them, setting her up for later problems.  That's not necessarily part of your scenario, but it's something I think about.  In her case, if I *can* get her functional with neurofeedback and Cogmed, that would be great.  What I think is going to happen though is that at some point this will go nuclear, I will contradict my dh, and she will go on short-acting (4 hour) meds.  That will allow her to get her school work done but not have it constantly in her system.  And the only reason I haven't pulled the trigger on that is because Cogmed seems to work better when you're not on meds and I want to do that first. I also don't know what the meds will cost and what our insurance will adjust it to.  There are all kinds of hoops, like recurring appointments with the ped, monthly scrips, blah blah.  

 

Another reason?  She has some anxiety (probably due to her sensory issues), and I've worried that maybe the meds would aggravate the anxiety and require ANOTHER med on top of that.  That would really not go over well.

 

What kills me is the idiot psychs who go "oh, you homeschool, you don't need meds" like this is something you just sort of work around.  If it CAN be done, we've done it.  We do projects, interest-driven, flexible schedules, clear structure, engaging materials, diet, oils, you name it.  Reality is, no matter what she's in, no matter what the subject, whether she likes it or hates it, whether it's an outside class or her own plans, just the simple act of sitting down and focusing, coupled with her low processing speed, WEARS HER OUT.  And that's the worst thing.  It's not whether or not she gets work done.  It's what she's NOT getting done because she's working 2-3 X as hard as anyone else to do the same thing.  THAT's what's not fair.  I've watched it for years in my kid, and she doesn't have any other complicating factors like the FASD on top.  I think there's a point where you just say you know, I want you to be what you CAN be, and toughing it out and showing that you can work 2-3X harder than anyone else to do the same thing is NOT the best use of your time and energy.

 

Your dd is going to have LOTS of chances to disobey, to work on self-control and impulsivity.  It's not like the meds magically make those things go away.  She's still going to need work on EF, working memory, how to work within structure, etc.  All it will do is bring reasonable things more in-reach.  

 

My ds has an ADHD label in his mix, btw.  He his HIGH impulsivity, really high, and it makes him astonishingly hard to teach. (Well that and the giftedness, so together it's like constant ideas, constant enthusiasm, constant drive, just bolting off in any direction that impulsively pops into his mind, zoom!)  I'm going all in with the neurofeedback, hoping to do 40 sessions at 2 a week, to see where it can get him.  He doesn't have the low processing speed of dd and the mental fatigue (his processing speed is with 30 %ile of his IQ, where dd has a 60%ile spread), but it's just this off the charts impulsivity.  It makes him very hard to teach and keep up with, and can be a DANGER.  I draw the line at ability to teach and danger to oneself or others.  The meds are known to tame down that impulsivity.  That's why I'm going all in with the neurofeedback and funding it so much this year.  He's too young for Cogmed (8+ is better per the research), so neurofeedback is what's left.  If I can't teach him or he's a danger to himself or others, he'll go on the meds.  I'm just letting it work out.  In other words, I'm much more aggressive on this the 2nd time around.  

 

I *do* think waiting on the meds can give you time to work on coping techniques.  (executive function, working memory, picture schedules, better forms of discipline, etc.)  But at some point, sooner or later, you've exhausted that and conclude there's enough going on that the dc would be radically happier on the meds.  A child WANTS to please, and I think it's a GOOD thing to get them in a position where they CAN please you and comply.  And if you've done the things you know how to do and for their situation they can't get to where they're able to function and be happy in the home, then getting them some meds so they CAN get to that state is a good thing.  Better to be on meds and happy than off meds and unhappy, kwim?  And that's each person's mix.  I'm just saying that's how *I* sort it out in my mind: is it working, is the dynamic healthy, is the child getting the experience to grow up happy and healthy and able to comply?  If it's working, it's working.  If it's not, change it.  

 

And no, diet will help some but it's not going to get as far as I'm guessing you need to get.  Sure put her on 3 cups of salad a day and 3-5 cups of fruit a day.  Cut out everything processed and add in 2-4 oz of meat daily, oatmeal in the morning, and 2 cups of starchy veges and some grain (brown rice, millet, etc.).  Absolutely you can do that and get kids to calm down a bit.  That's how we eat (literally) and it's probably the only reason my kids are as functional as they are sans meds.  But most people don't want to live like that.  I've known people who did it but struggled with keeping the child compliant.  A child craves whatever he ate via his mother in the womb, so you'll get these strange things.  Sometimes fighting the dc over diet doesn't work.

 

OT is huge.  If you can get into an OT who does neurofeedback, you can see how far it would get you.  Even a month of OT doing BalavisX and RMT for reflexes was enough to start to tame down some things on my ds.  Maybe it would help get you to a place that works, don't know.  

 

[kbutton]

Your dd is going to have LOTS of chances to disobey, to work on self-control and impulsivity.  It's not like the meds magically make those things go away.  She's still going to need work on EF, working memory, how to work within structure, etc.  All it will do is bring reasonable things more in-reach.  

 

OhE has some thoughts that are really compatible with mine. We waited on meds, and I kind of wish we hadn't. I am glad we waited until we were sure it more than ADHD, but I wish we'd have tried them sooner than we did. Meds even how his ability to perform. They also inhibit his impulsiveness. He sometimes doesn't like this part, but that is because a lack of inhibition lets him be more "wild," and he perceives that as being less fearful to do some things (like sing on the kids' praise team, which he still does with meds) and even as a social skill (it's not!). :-) I think that if he started meds earlier before he was as self-aware as he is, then he might not have noticed that much of a difference in this area.

 

As for babies exposed to drugs and alcohol...I understand that this is real. There are folks on the board dealing with the long-term repercussions of that. I also know someone whose parenting was (at least for a time) paralyzed by this possibility--she felt like she couldn't trust her own instincts because she was not an expert (and they were doing some financially radical stuff as recommended by EI), and the things she was seeing were attributed solely to the drugs in utero, not to other possible developmental issues (and the likely diagnosis is one that occurs frequently outside of the presence of drugs). The advice came across to this mom (intentionally or not) as "You must do what we say because your child was exposed to drugs, and we know best." It was not a healthy, supportive dynamic in some ways with EI; they kind of made her stress both better and worse with their style of support and "concern." After hearing more of the bio family history, I would guess that the sorts of problems her child has are quite possibly genetic, and the bio mom was self-medicating. Did drugs make it worse? Maybe. The fact is that this child reminded me from almost day one of my son, who was not exposed to drugs during pregnancy. This is not at all to downplay the possible problems that come from drug exposure, but to tell you that it's not always the whole story, and you are still the mom with your own set of knowledge and decision-making skills. By all means, listen to the experts, but don't let them frighten you out of your own good sense. I guess my whole point is that drug exposure seems to be a catalyst for high-stakes parenting, and I hope you don't feel that you have to live in a manufactured crisis all the time--it's a special need, and SNs are stressful; don't feel like you have to display extra distress (aside from the normal grieving that comes with such things).

 

(I will not be offended if families whose children were exposed to drugs have a big corrective to my statements. The scenario I'm painting may be an extreme or unusual case. EI might not have known how to read this mom's responses--you never know.)

[Crimson Wife]

We went to see an integrative neurodevelopmental pediatrician who literally wrote a whole book on natural treatments for ADHD. We exhausted his list of suggestions and my little one was having symptoms that majorly interfered with her ability to function at school, out in the community, etc. So even he thought that we should try pharmaceutical treatment. He's a MD so while he thinks that pharmaceuticals are way overprescribed for ADHD, he still believes that they're necessary in some cases. His philosophy is to try nutrition and behavioral approaches first, and then resort to pharmaceuticals if symptoms persist and cause significant impairment with daily life.

 

I'm not thrilled by my 6 y.o. taking two different medications (a stimulant in the morning and a non-stimulant at night) but they make a world of difference.

[kbutton]

I know that I need to find a way to adjust schooling...Maybe I should start another post about that, but I want to troll around more on this board first because I'm sure it's been covered many times. Her biggest struggles are hating to feel like she's "failing" at anything, frustration with herself and the work when it gets hard. At home I don't even see much hyperactivity, it's mostly the behavioral issues that make schooling so hard, so I have to find ways to help her manage that.

 

At this point she's able to read to me for a half hour...She'll take little breaks to talk about the story or pictures, but that's fine with me, she's taken great leaps in fluency and she gets it done because she feels proud of herself, which is SO important in keeping her motivated. Math is a little more of a challenge, I was using RS which worked wonderfully for a year, but then she started getting overwhelmed and shutting down. She does well with math on the iPad though, so maybe I just need to adjust my expectations of what an "ideal" math education looks like. Other subjects will be primarily interest led at this point. (We're doing a cicada study now because that's her interest-du-jour, I'm incorporating reading and writing, maybe I'll find a way to incorporate math as well...) So I hopefully CAN do this, again I just need to adjust my expectations of what a school day looks like and what my goals for her education are.

 

BTW, I think it sounds like you are a responsive parent already, and you are going to handle this well, whether you keep her home or send her to school. It's going to take time to adjust, but getting these evaluations will help you get there faster with better tools for yourself. I didn't want that to get lost in the discussion of meds. We had many of the same issues, and my son is now doing very well in 6th grade. We did K-2 in private school first (before we had any diagnosis), and then we brought him home. Our final diagnosis came a year later.

[Storygirl]

First of all, :grouphug: , because getting the NP report can certainly be emotional in all kinds of ways. Relief that we now have some answers. Confusion about what to do next. Grief when we think of the long-term implications and the difficulties that lay ahead for our children. And we may also feel overwhelmed as homeschoolers with feeling the burden of being responsible for handling all of it. Yes, we can get outside help, but the daily responsibility of educating a SN child falls on our shoulders, and it's easy to feel inadequate.

 

That's why I love the LC board, because others here understand what it's like in a way that few others do.

 

Now about meds. We always suspected DS had ADHD (I mean since age one) but didn't see the need for a label or meds until he was age nine, because we homeschool and didn't need him to be able to function in a school setting. BUT, and this is a big BUT, we all struggled terribly before meds. All of us -- the whole family -- were affected by the ADHD, even though DS11 is the one who has it. We finally decided that meds were a tool that could help DS be the best version of himself. And the differences for him are drastic, both academically and in his ability to get along with others. Because he could not control his behavior (he is extremely impulsive), he generated a lot of unhappiness and stress for himself and others. After medicating, I realized that we hadn't needed to live with that kind of stress for almost ten years, and I regretted not starting them earlier. You mentioned that you see more behavioral issues rather than hyperactivity issues, so I want you to be sure you know that the meds can help the child manage their behavior better.

 

For academics -- it made a huge difference with math, specifically. Previous to meds, he would break down just looking at his math book, because it seemed overwhelming to him. It was horrible every day. After meds, he still doesn't like to do the work, but he is able to accomplish it without emotion, and sometimes even starts his math on his own before our official school time begins, so that he can get a head start and finish it earlier. It's a 180 degree turnaround. I'm not saying that it changed his academic abilities, but it changed his ability to apply himself to his work without distress.

 

The meds are not a cure all. DS still has plenty of issues that we work through constantly on a daily basis (he has multiple diagnosed learning challenges). But they make a huge difference for him and for some others.

 

A couple of things to consider about meds -- Generally they are short acting, and you can see whether there is improvement right away. You also can see some side effects right away (though with DS's anxiety, some of that impact ramped up over time until we had to switch to a different med). The reason that I mention this is that you can try meds without deciding whether to do it long term. You may be able to tell after just a week or two whether they are effective or not. Sometimes you can tell the very first day (we tried a couple of things that completely did not work for him, and it was evident immediately). You would need to check with your doctor for specific instructions, but all the meds that we tried could be stopped cold turkey and were out of his system within hours, so when things did not work, we did not have to keep administering that particular drug, and we could start another kind the next day. It did take us some time to find what would work well for DS but not give him side effects, so we tried several different things. This is not uncommon, so if you ever decide to try meds, don't think that if the first option doesn't work that nothing will. Ask the doctor to try something else or a different dosage.

 

I was very cautious about meds. I would say that I was anti-meds. Knowing these things would have helped me work through things earlier, so I thought I'd share.

 

Also, I don't have any medical studies to point you toward, but our pediatrician told us that children who start meds at a younger age are more likely to be able to go off the meds earlier. The meds stimulate neuro pathways in the brain, and since we now know the brain is elastic and can change and develop over life (this was not always thought to be true), meds can sometimes help the brain mature in these areas so that meds are no longer needed. This is something that you can ask your doctor about. Don't take my word for it, because I am not a scientist or expert.

[nature girl]

Thank you all, so much to think about. I value all of your input so much, and it's so very useful hearing about your experiences. I wish I could hug you all...

 

At this point, although Anna can be a handful, somewhat rebellious and hard to control outside the home, she's not harmful to herself or others, doesn't show many signs of ODD. I think if I can find a way to help her work through her emotional disregulation (which is what often stops her from wanting to do anything challenging), that would be huge. She's not an angry person at all, and usually such a happy kid but also SO sensitive, cries at movies that are only mildly sad, even cried the other day over a beetle she found crushed on the street. It's just heartbreaking to see how things affect her, and that more than anything might push me to try meds.

 

I also do wonder what else might be going on...She doesn't have signs of FASD, she's incredibly bright (which in a way I think makes things harder for her), and doesn't show any attachment issues, if anything she's overly loving to friends and family. But I do sometimes wonder if there's an underlying mild spectrum disorder, mainly because of social difficulties and because none of this really started before she was three. For her first 3 years she was OVERLY calm, no tantrums, nothing. If you had told me she had ADHD I would have laughed, she was the polar opposite.

 

Then we started seeing little issues with frustration tolerance and impatience, the hyperactivity has really only been within the last year. Before that, if anything she was a little too sedentary, didn't like running or climbing, spent hours working on crafts or listening to books, learned to read early and completed RS A at 4. Now she can't listen to more than one chapter without starting to wiggle. And really the past 3 months have been worse than anything we've seen. Why is it getting more intense? This is what made me wonder if diet was a factor, if over the years a leaky gut was affecting her brain. We haven't noticed many changes with GF/CF, but I'm tempted to try something more radical. But maybe this is because ASD developed at that time, which led to her ADHD tendencies. I don't know, with all the research I've done I haven't heard of anyone else who's gone through this late development of symptoms. I'm really looking forward to the neuropsych next month, hoping it can give us more answers.

 

 

Also, I don't have any medical studies to point you toward, but our pediatrician told us that children who start meds at a younger age are more likely to be able to go off the meds earlier. The meds stimulate neuro pathways in the brain, and since we now know the brain is elastic and can change and develop over life (this was not always thought to be true), meds can sometimes help the brain mature in these areas so that meds are no longer needed. This is something that you can ask your doctor about. Don't take my word for it, because I am not a scientist or expert.

This fascinates me, I'll have to do some more research. If it holds true, it's certainly a compelling argument!

 

Thank you all again so much, this is all so helpful.

[texasmama]

Thank you all, so much to think about. I value all of your input so much, and it's so very useful hearing about your experiences. I wish I could hug you all...

 

At this point, although Anna can be a handful, somewhat rebellious and hard to control outside the home, she's not harmful to herself or others, doesn't show many signs of ODD. I think if I can find a way to help her work through her emotional disregulation (which is what often stops her from wanting to do anything challenging), that would be huge. She's not an angry person at all, and usually such a happy kid but also SO sensitive, cries at movies that are only mildly sad, even cried the other day over a beetle she found crushed on the street. It's just heartbreaking to see how things affect her, and that more than anything might push me to try meds.

 

I also do wonder what else might be going on...She doesn't have signs of FASD, she's incredibly bright (which in a way I think makes things harder for her), and doesn't show any attachment issues, if anything she's overly loving to friends and family. But I do sometimes wonder if there's an underlying mild spectrum disorder, mainly because of social difficulties and because none of this really started before she was three. For her first 3 years she was OVERLY calm, no tantrums, nothing. If you had told me she had ADHD I would have laughed, she was the polar opposite.

 

Then we started seeing little issues with frustration tolerance and impatience, the hyperactivity has really only been within the last year. Before that, if anything she was a little too sedentary, didn't like running or climbing, spent hours working on crafts or listening to books, learned to read early and completed RS A at 4. Now she can't listen to more than one chapter without starting to wiggle. And really the past 3 months have been worse than anything we've seen. Why is it getting more intense? This is what made me wonder if diet was a factor, if over the years a leaky gut was affecting her brain. We haven't noticed many changes with GF/CF, but I'm tempted to try something more radical. But maybe this is because ASD developed at that time, which led to her ADHD tendencies. I don't know, with all the research I've done I haven't heard of anyone else who's gone through this late development of symptoms. I'm really looking forward to the neuropsych next month, hoping it can give us more answers.

 

 

This fascinates me, I'll have to do some more research. If it holds true, it's certainly a compelling argument!

 

Thank you all again so much, this is all so helpful.

Re:  the bolded, a child being indiscriminately attached to people is also a sign of attachment disoder.  Just an FYI.  (I'm a therapist specializing in kids and adolescents.  Sorry to trot that out, but I worked for years with kids in foster care and found there to be two extremes in RAD - under-attached and over-attached, for lack of better terms.)

 

With kids as young as your dd and with a very complex and not completely known history, it can be very difficult to tease out the true and accurate dx, and sometimes these are only really seen over time as the child ages.

 

Another plug for meds earlier rather than later is that starting meds in a teen is often met with a great deal of resistance.  And it is not possible to force a teen to take meds.  It's just not.  So sometime between now and about 9-10 would be a good time to try meds if you want to go that route.

 

I agree that meds for ADHD are overprescribed, but when they are needed, they are NEEDED.  They will not remove your child's personality or the good qualities you see in her.  Not pushing meds, just adding to the voices of reassurance.  ADHD meds are a very reasonable thing to try - not "out there" at all.

 

I have a teen who would probably benefit from meds at this point, but he refuses to try.  We all pay every day for this choice.  I have mixed feelings about it, as well, but if our current approaches (some brand new ones) are not proving effective, I will broach it again. This kid is complex, as well, so it is likely an SSRI that would be of benefit.

[kbutton]

My son was able to focus for hours when he was a preschooler. He wasn't hyperactive until the last couple of years. Our psych said it's unusual for hyperactivity to develop later, but it's clearly the case with my kiddo. I don't know if we'd see big changes with diet or not. We eat better than the standard American diet by quite a lot. 

 

My younger one that is ADHD is inattentive, but also more flighty and emotional (very sensitive). He fidgets a lot more and has trouble settling in, but then he's pretty good about just doing something. He can concentrate for a while on areas of special interest. He is also very bright. He tends to learn in big huge intuitive spurts, ride that, and then get grouchy and need a change of pace (sometimes more challenge, sometimes just more fun). That could be part of what is going on with your DD. He also has low muscle tone, and while he was active as a baby, he was not as active as I expected for such an alert kiddo. Anyway, he experiences a lot of muscle strangeness as restlessness--I think he has a hard time sitting still when his muscles are tired and he needs to change position because the muscles are tired. I am not sure that's the whole picture, but I think it's part of his trouble that way. We did OT last winter, but low tone kids need more workouts to gain and keep their muscle tone.

[PeterPan]

To me there's the ASD hyperfocus and the ADHD impulsivity and inattention war in the child's body and brain.  Sometimes you'll see more of one or another, but in our house the *impulsivity* is always really high, whether it's the hyper-focusing or the bolting we're seeing more of.  But yes, it was very hard for the ps IEP team to get to ADHD when they could sit down with my ds and have him work for 45 minutes straight on something.  When he's engaged, he really can.  And yet I have *2* private psychs confirming it and the ps psych going it's obviously here but how do we say it's here when the TOVA wouldn't show it, lol.  And the 3rd private psych says well no joke, the TOVA is a computer test and he thought it was fun and used his hyperfocus.  

 

The IQ part is tough.  My dd used to say she was bored.  People blow that off and say it's the kid's problem to solve, but with ds it's bored plus higher IQ to get even more bored plus more impulsivity plus inability to initiate something plus...  

 

Texas mentioned unusual attachments being another sign of attachment disorder.  Likewise, being unusually calm and NOT going through stages like the terrible 2s are a sign of developmental problems and things glitching up.  An OT eval may turn up some stuff there to explain it.  People don't like it when we get freaky, but pretty much any time you're diverging from the norm, it's a good idea to notice.  I spent a lot of time when dd was young blowing off things that were different from the norm as oh that's just her personality, and it meant we missed things and were late working on things we could have caught earlier.

[Lecka]

I know two kids personally who take ADHD medication.  They are friends of my oldest son.  The first one, broke something in my home after many close calls, and I quit letting him in our house after that.  I did take them to the park many, many times, where nothing could get broken.  I have never had another child over age 3 who I felt like was going to mess up my house like that.  He started medication after he and my son moved on from being such good friends, but I still talked to his mom.  He did not do well with the first medicine he tried, but he did much better on the second medicine, and he is obviously a calmer kid.  I also hear gossip (really more reports from my own son -- I am fortunately not around people who would gossip about children this way, but I have heard some things from people I am not friends with) about who is sometimes needing extra help in school (and this is NOT only a public school thing, in fact I personally think it can be even worse sometimes in non-public-school settings, just depending on the atmosphere) -- and it is not this boy anymore.  He used to be notorious in his grade.  

 

The second child came to a sleepover, and his medicine was going to wear off while he was at our house.  His mom spoke to me about it and said call her to come get him if needed.  He stayed the whole time, but he was causing other kids to be frustrated with him, by not taking his turns well enough when they played, and getting bossy, and over-reacting to things.  For me -- he did not follow directions as easily, but it was manageable.  But I doubt my son would have been friends with him, if he always acted the way he did when the medicine was worn off.  He was very possibly not at his best for other reasons besides just the medicine wearing off, but we had the kids lay down at 10:00 and I checked on them and made them quit talking and stuff, so it is not like he was up all night.  

 

Medication has never been recommended for either of my sons, so it is not a decision I have ever faced.  But I feel like I have seen these two kids benefit.  I do not think it is nice for young kids to have a bad reputation, or to be unable to play with friends, and I do not think those things are entirely under a parent's control.  My older son (let alone my younger son) had a speech delay when he was younger and it made him have a hard time finding kids to play with who would want to play with him, and it is just a hard situation.  It is not just a school thing.  It may just be a school thing -- and I think that is different.  I just mean, for these 2 kids it was not something where there only consequences were results of a school setting.  They both wanted to have friends and be included and invited and things, but these can be the kids where your kids are saying "don't invite him, he doesn't take turns" and that kind of thing, and not every parent is going to be nice about it, even though many are and I hope you have (or can find) some good kids for her to be around either way.  

 

I am just mentioning this b/c it is the kind of thing that people who want to be really negative about medication never seem to mention.  There are reasons to medicate I think are shallow -- but I don't think it is shallow to want kids to be able to have friends and positive interactions with others.  

 

And, I do not know anyone who has medicated shallowly.  As much as I seem to hear about imaginary (?) kids who are medicated for the most shallow, avoidable reasons.  I am sure it exists, but I have not met those kids.  I have only met two kids where I think it has helped them, and I think they are having happier childhoods than they would otherwise.  

[texasmama]

Piggy-backing on OhE's comments, my ASD kid was abnormally quiet and compliant as a toddler/preschooler.  He was my easiest kid in terms of discipline during that time frame.  Once he hit adolescence, it all changed.  That is when he really looked ASD to me - glaringly, gobsmackingly so.  Before that, he was a sweet kid with severe sensory processing disorder who also had anxiety.  (All of that is classic ASD, but I did not see the deficient theory of mind until adolescence.)  Sometimes the picture does not become completely clear until a kid gets older.  I have seen that time and time again.

[Crimson Wife]

Re:  the bolded, a child being indiscriminately attached to people is also a sign of attachment disoder.  Just an FYI.  (I'm a therapist specializing in kids and adolescents.  Sorry to trot that out, but I worked for years with kids in foster care and found there to be two extremes in RAD - under-attached and over-attached, for lack of better terms.)

 

Being inappropriately affectionate can be a sign of autism as well. For all the stereotype of the cold, aloof loner who hates being touched, that's not necessarily how all kids with autism present. I've got a "hug monster" who has difficulty understanding personal space and why she needs to reserve physical affection for ( A ) people she knows well and ( B ) after she's gotten permission from the person. She's getting better about asking, "Can I have a hug?" but we're still working on recognizing who is an appropriate person to ask.

[Storygirl]

I agree with Texasmama. We've seen things change with DS11 as he approaches adolescence. He's gotten better at some things and worse at others over time, but what has also made a difference is that he has not matured at the same rate as his same-age peers in his social skills. Most young children need to work on social skills, because it is a part of growing older, and this happens fairly naturally as they mature. So when children lack in this area, the differences become more pointed as they age.

 

I also agree with Lecka that ADHD and related issues can have a major impact on friendships, and that this is something to consider.

 

And, like OhElizabeth's son, my son's ADHD (which is severe, by the way) is sometimes not evident, because he can hyperfocus on certain activities. And his anxiety and introversion makes him kind of close down around grown ups he doesn't know, so he just sits silently during his 30-60 minute pediatrician and counseling appointments. He definitely has ups and downs with his energy and behavior and impulsivity, whether he is on the meds or off of them. Just this week I talked to the pediatrician about how hyper and impulsive he's been lately (we've been adjusting his meds in anticipation of the beginning of the school year), while he sat completely sedately and silently next to me. Sometimes I think I should take a video of him in his active mode as proof!

 

Also, we recently got DD10's NP report, and he thinks she has ADHD inattention type. She is completely different from DS11, and it came as a surprise. I do see it now, though. So sometimes it's hard to see the ADHD even when it is there.

[nature girl]

This is interesting...I'd never heard of other kids developing hyperactivity later after being such calm kids. Thinking back again I guess she did throw tantrums, but it was only once a week or so (and almost exclusively centered around food) compared to at least daily for the other kids we spent time around. (And we thought we were so lucky...) There are so many different flavors of ADHD, I wish more studies were being done on who the meds actually help and are necessary for, and who can do well with alternative treatments.

 

My younger one that is ADHD is inattentive, but also more flighty and emotional (very sensitive). He fidgets a lot more and has trouble settling in, but then he's pretty good about just doing something. He can concentrate for a while on areas of special interest. He is also very bright. He tends to learn in big huge intuitive spurts, ride that, and then get grouchy and need a change of pace (sometimes more challenge, sometimes just more fun). That could be part of what is going on with your DD. He also has low muscle tone, and while he was active as a baby, he was not as active as I expected for such an alert kiddo.

 

All of this fits Anna exactly. Interesting...Seriously I could have written that paragraph myself (although I wouldn't have used the word "flighty," that doesn't quite fit.) And OhE, I have a feeling she'll be attentive in the same way with the neuropsych, whenever anything fun is involved. She can play games for a long time, with us or on the iPad, not fidgety at all. On the other hand, she's going to have a really hard time keeping herself together with a full day of testing even if it's fun (and we totally have that bolting issue), so I think it'll become obvious.

 

For her the hyperfocus is primarily with either drawing pictures or pretend play, and it's why we never suspected anything was wrong until last year when it became more and more difficult both to teach her and to take her out in public, the only times she really acts up. She can build block/magnatile/loose parts houses, or costumes from foam and paper, and play with them happily for hours (even more happily when one of us is playing with her), and you'd never guess anything was out of the ordinary other than the crazy creativity. (Again we thought we were so lucky!) I want to find a way to harness that, and if it continues as she grows older there might be so many creative career paths that would fulfill her.

 

Re: the affection, I hear you, and at one point AD did cross my mind (especialaly when at 2 she got mad at me for telling her it wasn't dinnertime, I tried to hug her to calm her down and she yelled, "I don't love you, all I love is food!") but after doing a bit of research it doesn't seem to quite fit. She's very friendly with strangers, shows no fear (feels much more comfortable with adults than other children), sometimes even asks strangers she's had conversations with to come over to play, but never tries to hug them, and has only said "I love you" to my husband and me, our cat, her two best friends and the one aunt she's closest to. The ASD seems more possible to me, and maybe there is something else associated going on because of the fixation on food, and because she does have problems at times understanding personal space in the playground and such. And the love she shows this small group of us is just overwhelming at times. (Um...can I say again how lucky we felt?) There are also definite social issues, where she doesn't know how to read other kids' discomfort, and doesn't quite know the best way to join in play. (She has two friends, and the three of them play very nicely together, but I think they've kind of adjusted to each other.)

 

Are the social issues just from ADHD or from something else? I don't know...She reads our emotions very well, as well as emotions of characters in movies, and has been able to understand (and to our dismay use) sarcasm perfectly, which doesn't seem to fit with ASD, but maybe she's toeing the line. She's also always been a very deep thinker, you talk to her for 5 minutes and you can tell there's a kind of wisdom well beyond her age there. (She was giving us theories of death when she was 3.5, for example.) That can be an ADHD thing, I think? But not ASD? Or is it symptomatic of both? Like the doctor told us yesterday, she's a very complex case.

 

[nature girl]

(She's being a complete angel today, by the way. It's like she senses I'm stressed and sad and is trying to make life easier...Which of course makes me question everything.)

[Soror]

(hugs) It is so odd because in a way it is validation that you aren't crazy for thinking something is wrong but the most terrible thing to realize you are right.

 

My son is not medicated and I was vehemently opposed but I agree with those that say it should be considered. On my end I hear a lot of armchair psychology commentary from people with little first hand experience and are just blanket anti-meds  but now being on the other side of it I've read too many stories of parents and kids upset they waited so long to do it. Sometimes the brain doesn't function correctly and meds really can help. Other things can help, diet did make a HUGE difference for my son, pyconogel and Omega 3 helped, aging has helped (thus far- he just turned 11) and Cogmed helped but he has had some rough periods and I've told dh if he continued to function at that level then we would be doing him a disservice to at not least try and see if it helps. 

[texasmama]

My ASD kid has sarcasm to a science, but he is much older than your dd.

 

The bottom line is that you have a complex kid who is really young, and it may be years before you get the full picture.  I can see that you are seeking and open, and that is the key, IMO.  Keep asking questions.  :)

[ktgrok]

When you get a diagnosis, even if you expect it, you grieve at first. But you know what, all those things that were frustrating you so much? Those won't be AS frustrating anymore, because you will understand why. I don't know why that makes it easier, but it does. 

 

If your perfectly capable child was limping around, being silly, it would drive you crazy. But if your kid with a broken leg does it, you don't really mind that much. Instead, you adapt, you research the best crutches, or you carry them if you have to. That's what a diagnosis does for you. It gives you  a different perspective. 

 

So feel the grief, that's valid. But know it will probably get better, not worse, from here on out. 

[kbutton]

I think I would let the developmental ped work this out a piece at a time as long as you are not being put off or dismissed in some way. Sometimes even knowing everything that is obvious all at once, it takes time for other signs to emerge that will make things more clear about one diagnosis or another. I don't think my son would've gotten an ASD diagnosis the first go around. I also think that maybe one reasons he didn't appear hyperactive is that he was often in sensory overload mode and shutting down, shutting himself off (or going crazy with sensory--walking into walls, dumping himself off of chairs, etc.). Once we removed some of that and he matured a bit, he wasn't always in shutdown mode, so he was more hyper. Just a theory. (I keep switching between my two boys--sorry to be confusing. Elements of your story sound like pieces of both of them.)

 

I think having some idea of what you think is the problem is a good thing, but I also think it's nice (if you can get to that point--I am not sure I was there with my son until I actually heard very specific stuff about what ASD and gifted looked like together) if you can say, "I really don't see x diagnosis, but I am willing to be proven wrong...what makes you think this is the case rather than it being y...what evidence are we weighing differently, or what experience tells you that this diagnosis fits even when I'm not seeing it?" Or if the person evaluating thinks something is off, but can't find a label that makes them happy, maybe you could ask, "What's holding you back from diagnosis x (ASD or whatever)?" It's entirely possible some of those traits she's looking for could show up more obviously later or that she has them, but they don't quite fit the typical presentation (my son's repetitive behaviorsstims are usually noises, for instance, and much less often show up as an action). I think what you have going for you with this ped is that she's seeing some labels for certain, and while she may be rejecting additional labels, it's because she wants to wait and see. That's a good thing, I think. 

[Crimson Wife]

 

 She reads our emotions very well, as well as emotions of characters in movies, and has been able to understand (and to our dismay use) sarcasm perfectly, which doesn't seem to fit with ASD, but maybe she's toeing the line. 

 

How does she do with more complex emotions where she has to understand the situation in order to properly identify the emotion? There is an "emotions" program in my little one's Applied Behavioral Analysis and she tested out of knowing the basic emotions (sad, happy, angry, sleepy, hungry, etc.) Where she struggles is when the facial expression is ambiguous and she has to figure out from the situation how the person is feeling. Suprised vs. scared, excited vs. anxious (as in eager), confused vs. bored, embarrassed, etc. These are emotions that rely more heavily on "theory of mind" and that is very difficult for her.

[nature girl]

How does she do with more complex emotions where she has to understand the situation in order to properly identify the emotion? There is an "emotions" program in my little one's Applied Behavioral Analysis and she tested out of knowing the basic emotions (sad, happy, angry, sleepy, hungry, etc.) Where she struggles is when the facial expression is ambiguous and she has to figure out from the situation how the person is feeling. Suprised vs. scared, excited vs. anxious (as in eager), confused vs. bored, embarrassed, etc. These are emotions that rely more heavily on "theory of mind" and that is very difficult for her.

Well this is interesting, and somewhat distressing. I just did a little test on her, and she distinguished between surprised and scared screams and expressions perfectly, and I showed her several pictures of excited vs. anxious and the recognized those perfectly as well. Confused versus bored, though, she had no idea, was convinced she was right even when the expressions were obvious to me. Tick another checkmark in the ASD box, I guess. :(

[nature girl]

When you get a diagnosis, even if you expect it, you grieve at first. But you know what, all those things that were frustrating you so much? Those won't be AS frustrating anymore, because you will understand why. I don't know why that makes it easier, but it does. 

 

If your perfectly capable child was limping around, being silly, it would drive you crazy. But if your kid with a broken leg does it, you don't really mind that much. Instead, you adapt, you research the best crutches, or you carry them if you have to. That's what a diagnosis does for you. It gives you  a different perspective. 

 

So feel the grief, that's valid. But know it will probably get better, not worse, from here on out.

This is so perfectly said. It does change everything about the way I'm approaching and accepting her "exuberance" today. I think it really will help in the long run, especially for my husband who didn't seem to accept my assertions that she was TRYING to be good, wanted more than anything to hold things in, just wasn't capable of it. (Her desolation when we sent her to time out-which we rarely do anymore because of that desolation-was just heartbreaking. She wasn't even angry, rarely cried, just turned completely inward, like she thought she deserved any bad thing that came to her.) He thought she was so bright and wise that she should be smart enough to have control...

 

Anyway, I'm usually able to swallow my frustration, but it has grated on me daily, and maybe this'll actually help me to look past it (around the other side of it?) and feel more sympathy. So yes, in the long run a diagnosis is a very painful good thing.

[PeterPan]

Well this is interesting, and somewhat distressing. I just did a little test on her, and she distinguished between surprised and scared screams and expressions perfectly, and I showed her several pictures of excited vs. anxious and the recognized those perfectly as well. Confused versus bored, though, she had no idea, was convinced she was right even when the expressions were obvious to me. Tick another checkmark in the ASD box, I guess. :(

 

Someone else will say this, but honestly slow down and just let the psych do his/her thing.  All you're doing here is working yourself up and hurting yourself unnecessarily.  That's not how it's going to work and you've proven nothing.  If it were that straightforward, they wouldn't spend 6-8 hours and bring in multiple professionals to do it.  

 

This could go ADHD with social delay.  It could be on those two words she didn't fully understand them or that she has some language issues and that it had nothing to do with the faces.  Let the psych do the testing and let them sort it out.  Let it be a snapshot of what is obvious now, deal with what you figure out, and learn more as time goes on.  

 

To me the language testing has always been one of the more interesting parts of the neuropsych testing.  Sometimes there are explanations for behavior you don't expect and it shows up there.  For instance we thought my dd was slow to obey, and it turned out she had really low processing speed.  With my ds, sometimes he seemed deaf and sometimes he seemed to be ignoring you and sometimes it was just really, like why do I have to keep saying something before you get it, can't you understand what I'm saying.  And it turned out he couldn't!  Literally he had this crazy huge gap between his single sentence and paragraph comprehension.

 

They're probably going to do pragmatics testing on her, and that can yield really interesting results, stuff that's treatable.  (Some of what you were describing was pragmatics.) 

 

So don't assume the worst, most severe explanations even.  You may get surprising or very treatable explanations.  It's all going to be ok.  It's going to be rough and scary for a while and make your head spin and get overwhelming, but it will be OK.

 

[kbutton]

He thought she was so bright and wise that she should be smart enough to have control...

 

I was smart, capable, and self-sufficient. Or so people thought. It led to me be unmentored and at times unparented. Looks can be deceiving. I had wonderful parents--they provided a great environment. They are just different from me and didn't realize the outside and inside didn't necessarily match. I've talked to other people with my same Meyers-Briggs profile (INTJ) that have expressed feeling similarly at times. 

[nature girl]

When you get a diagnosis, even if you expect it, you grieve at first. But you know what, all those things that were frustrating you so much? Those won't be AS frustrating anymore, because you will understand why. I don't know why that makes it easier, but it does. 

 

If your perfectly capable child was limping around, being silly, it would drive you crazy. But if your kid with a broken leg does it, you don't really mind that much. Instead, you adapt, you research the best crutches, or you carry them if you have to. That's what a diagnosis does for you. It gives you  a different perspective. 

 

So feel the grief, that's valid. But know it will probably get better, not worse, from here on out.

This is so perfectly said. It does change everything about the way I'm approaching and accepting her "exuberance" today. I think it really will help in the long run, especially for my husband who didn't seem to accept my assertions that she was TRYING to be good, wanted more than anything to hold things in, just wasn't capable of it. (Her desolation when we sent her to time out-which we rarely do anymore because of that desolation-was just heartbreaking. She wasn't even angry, rarely cried, just turned completely inward, like she thought she deserved any bad thing that came to her.) He thought she was so bright and wise that she should be smart enough to have control...

 

Anyway, I'm usually able to swallow my frustration, but it has grated on me daily, and maybe this'll actually help me to look past it (around the other side of it?) and feel more sympathy. So yes, in the long run a diagnosis is a very painful good thing.

[nature girl]

Someone else will say this, but honestly slow down and just let the psych do his/her thing.  All you're doing here is working yourself up and hurting yourself unnecessarily.  That's not how it's going to work and you've proven nothing.  If it were that straightforward, they wouldn't spend 6-8 hours and bring in multiple professionals to do it.  

 

This could go ADHD with social delay.  It could be on those two words she didn't fully understand them or that she has some language issues and that it had nothing to do with the faces.  Let the psych do the testing and let them sort it out.  Let it be a snapshot of what is obvious now, deal with what you figure out, and learn more as time goes on.  

 

To me the language testing has always been one of the more interesting parts of the neuropsych testing.  Sometimes there are explanations for behavior you don't expect and it shows up there.  For instance we thought my dd was slow to obey, and it turned out she had really low processing speed.  With my ds, sometimes he seemed deaf and sometimes he seemed to be ignoring you and sometimes it was just really, like why do I have to keep saying something before you get it, can't you understand what I'm saying.  And it turned out he couldn't!  Literally he had this crazy huge gap between his single sentence and paragraph comprehension.

 

They're probably going to do pragmatics testing on her, and that can yield really interesting results, stuff that's treatable.  (Some of what you were describing was pragmatics.) 

 

So don't assume the worst, most severe explanations even.  You may get surprising or very treatable explanations.  It's all going to be ok.  It's going to be rough and scary for a while and make your head spin and get overwhelming, but it will be OK.

I just asked her what "bored" meant, and her words? "It's when you're really exhausted, so tired you don't even want to play with your friends." Seriously she's been using this word for years without knowing what it means!

 

I know it's ridiculous of me to try to figure out what's going on just from hours of Googling and absorbing all your input, it's just so hard not knowing. I wish I had a crystal ball and could see where we'll be ten years from now...if I'm worrying too much or not enough.

 

By the way, my "angel" from this afternoon is now jumping, climbing and rolling around the living room. So there we are.

[PeterPan]

There was a year, a couple years ago, after ds' stuff really started coming to a head, and I went into the Cincy convention EXHAUSTED, just overwhelmed, undone.  I get in there, and the first talk that day was Kathy Kuhl, who is actually related some some people on the board here, btw.  Anyways, I get in there, sit down, reconnect with a long lost college friend (a whole other fabulous story!), and KK starts to talk.  And the first thing she decides is important to tell us?  This and that happened, things when wrong, things didn't go like I thought, even more didn't go like I thought, and IT'S OK.  

 

That was what I needed to hear that day, that it was going to be ok.  Things might not go like we think or turn out like we thought or they might fail at a bunch of things we had hoped to be able to help them do or this or that, and STILL the people who have gone ahead are saying and can testify: it's going to be OK.

[Crimson Wife]

Don't read too much off of a quick emotions test. Not all typical 5 y.o.'s necessarily know the difference between some of the more complex emotions. But a typical kid wouldn't need weeks' worth of daily drilling to learn how to distinguish among them.

 

Some things my DD just needs the vocabulary taught to her, and she masters them in a few days. The protocol is she has to be able to answer them correctly with multiple ABA therapists, so even if she learned them in a single setting, it doesn't get marked off until I think 3 different therapists run the drill.

 

Other things it's clear that there is a deeper lack of understanding of the concept. The more complex emotions fall into this category.

[texasmama]

I agree.  Take a deep breath and let the evals happen.  Know that she is young.  The labels could change - or not.  FAS is hard to pin down and there is a specific window when it is easiest to diagnose.  It is a medical diagnosis and a difficult one to make.  Without the physical characteristics, it is difficult to make definitively.

 

I agree that it is easier to deal with a child when you understand their limitations.  It is easier to have patience, IMO.  My ASD kid says things that are considered terribly rude and inflammatory, but he lacks this intent.  He is just stating his thoughts as they come and is unaware of how it affects others.  When I can view it through this lens, I manage it much better.

[Tiramisu]

I'm someone who was anti-meds. (Well, great for other people but not for my kids.) I missed a window of opportunity for one of my kids, and I was really sorry later because she wouldn't cooperate and get help when it became more obvious she wasn't going to grow out of it like everyone told me she would. Anyway, later still, she ended up in a scary depression. I think her tendency to become depressed was there and she had gone through bad times before, but I think years of everyone being annoyed by her behavior without understanding the reasons for it ended up with her feeling very unloved, bad, and helpless to become better. She hit a point when she herself became scared by how she felt and ended up finally getting treatment for the depression, when, who knows, if she had got help earlier she may have just needed ADHD meds. Healing from the depression hasn't been easy, but it's been good. The meds are one thing, but there's emotional healing that has to happen, habits to break, and learning a new way to live and interact. She has become very loving and appreciative of me, she's forming better relationships with her sisters, and very healthy friendships. I am very thankful for meds. Now we just have to tackle the ADHD.

[Citrusheights5]

Hi, just wanted to add my 2 cents. Take a step back and process what you've been given. You have time before your full day sit down to adjust, and settle into your new realty.

 

I was unable to do that, and ran my self round reading everything I could. I just couldn't proceed without doing that, so that is where my two cents comes in. On coursera there is a class called Pay Attention!! ADHD through the lifespan. That was great, and really helped me understand what was going on in little man's brain. (I'm another in the camp of waited and wished I hadn't) I just wanted to throw that out there in case it helps. But, I must say I wasted so much time reading about things that didn't apply, but it helped me not "fret"until I was able to get the answers I needed. L

 

I'm going to be taking the one The Brain and Space. It's about motor and sensory planning and how that shapes cognitive ability. Most of the time they talk over my head but, I usually get out if the classes what I need about my child.

[Guest]

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Edited June 22, 2016 by Guest

[WoolC]

Thanks to everyone who has chimed in about meds. I've been anti-meds in the past and to be honest the idea still scares me but I think it is something I need to look into.

 

My son is ASD but we are also dealing with very high impulsivity. Can this be part of ASD or could this be a sign that ADHD is in the mix? If we did decide to look into meds where is the best place to go for this? We have a neurologist and a developmental psychiatrist that we saw years ago, both of whom thought ds would grow out of his behaviors when they saw him at 3 years old.

 

I feel confident that we have some LDs going on as well but the psych that diagnosed ASD didn't think we should do any further evaluations at this time because ds would not cooperate with testing so results wouldn't be accurate. We struggle to get through 5 to 10 minute lessons in math and reading. Ds will sit and listen to me read for long periods but seems to have very little comprehension. It's so frustrating to not even be able to get accurate testing so I can figure out how to accommodate!

 

Hugs to the OP as you figure things out. This is definitely a hard process but you're not alone!

[texasmama]

Thanks to everyone who has chimed in about meds. I've been anti-meds in the past and to be honest the idea still scares me but I think it is something I need to look into.

 

My son is ASD but we are also dealing with very high impulsivity. Can this be part of ASD or could this be a sign that ADHD is in the mix? If we did decide to look into meds where is the best place to go for this? We have a neurologist and a developmental psychiatrist that we saw years ago, both of whom thought ds would grow out of his behaviors when they saw him at 3 years old.

 

I feel confident that we have some LDs going on as well but the psych that diagnosed ASD didn't think we should do any further evaluations at this time because ds would not cooperate with testing so results wouldn't be accurate. We struggle to get through 5 to 10 minute lessons in math and reading. Ds will sit and listen to me read for long periods but seems to have very little comprehension. It's so frustrating to not even be able to get accurate testing so I can figure out how to accommodate!

 

Hugs to the OP as you figure things out. This is definitely a hard process but you're not alone!

Re: the bolded, I have the same question about my son.  He is very impulsive and this has increased during puberty.  He has never been hyperactive.  He does not have attention issues that I have picked up on.  But good grief - the impulsivity!  I think the most likely cause for my son is ASD combined with puberty.  ASD and ADHD so frequently go hand in hand.  The behaviors overlap quite a lot between the two.  I think it is very hard to tease out.

[Guest]

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Edited June 22, 2016 by Guest

[PeterPan]

The ps psych really struggled with this with my ds.  He wanted to say he couldn't have ADHD as the mix, because the inattention was ok on the computer test he ran but the impulsivity was off the charts.  Psychs 1 and 3 (private) both put ADHD as part of the mix, with psych 3 clarifying that to him it's complex, that when the test used for inattention uses methodology he finds engaging, ds kicks in his hyperfocusing.  

 

[Guest]

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Edited June 22, 2016 by Guest

[Guest]

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Edited June 22, 2016 by Guest