Wow

[PeterPan]

The ps upped the ante, giving ds SLD reading, writing, AND math!  That's both good (since it's what I suspected) and bad when you slow down and think about it, ugh.  

 

Meanwhile we met for a 2nd (now 3rd) opinion with another private psych, and he diagnosed him with autism, specifically aspergers.  He said it's a classic case as far as the list of symptoms, just very complex.  He apparently enjoyed working with him and found him intriguing.

 

So yeah sort of somewhere between buzzing and WOW that was a mess to get upfront.  We went from happy go lucky adhd who will learn to read to here's a platter of SLDs and enough ASD that you're going to have extreme challenges and  extreme ability at the same time.  It's finally clicking why he's such a contradiction to teach. And the first guy saw it, saying there would be those extremes, but I didn't really GET it.  Now with the ps psych giving him all 3 SLD labels, that's pretty wow.

 

So we have to continue the process and do an ETR for the autism, meaning that's our next hurdle.  But when/if that's done, then we get scholarships and services, yeah!!!

 

 

[prairiewindmomma]

You are working hard to get ds the help he needs; good job, momma!

[OneStepAtATime]

It's amazing the feeling one gets with an accurate diagnosis, isn't it? A combination of relief and grief, and a renewed sense of direction, all at the same time.

 

 

You are working hard to get ds the help he needs; good job, momma!

 

 

Agreed...with both posts.   :grouphug:  and  :thumbup1:  I guess...

[PeterPan]

It's amazing the feeling one gets with an accurate diagnosis, isn't it? A combination of relief and grief, and a renewed sense of direction, all at the same time.

I know.  We're to that point where we HAD to have an explanation, we were so frustrated.  It was just becoming a real problem with parenting, with classes, with social things where people just assumed we were bad parents!  And then the ps psych pulled the "well he's homeschooled so he hasn't been with kids enough" stunt.   :svengo:   

 

So yeah, there's explaining to do and frustration and a process.  His own grandma can't handle him anymore.  When he's good, he's really pleasant, but when he melts down he's HORRID.  It's nice finally to have words.  It's nice to be able to say to people he has aspergers when they comment that he never talks to them or is acting in not the expected fashion.  On the other hand, I'm concerned about that becoming an EXCUSE for poor behavior, kwim?  I don't want that excuse thought process either, sigh.  But explanation we needed.  And I'm trying to step it up and be even MORE consistent, taking him out, stopping the car, being no tolerance.  Because if he's not gonna outgrow it and it's not gonna just magically go away, then we have a lot of issues to deal with.  Sigh.

[Crimson Wife]

I When he's good, he's really pleasant, but when he melts down he's HORRID.  

 

{{{hugs}}} because I can *SO* relate. Most of the time my little one is sweet, bubbly, and affectionate. But if she gets frustrated she'll do a Bruce Banner-into-the-Hulk transformation, ugh!

 

If you can get access to Applied Behavioral Analysis therapy with the new label, that would be my recommendation. We've seen a TON of improvement since she started ABA a year ago. We did see an "extinction burst" of escalating bad behavior at first when I stopped the ways that I had been unknowingly reinforcing that behavior. It was hard, but worth it because she has made more than a year's worth of progress.

[Princess Ariel]

Glad to hear you are finding answers.  That has to be a huge relief. :001_smile: Good luck to you!

[merry gardens]

:grouphug:

 

... It's nice finally to have words.  It's nice to be able to say to people he has aspergers when they comment that he never talks to them or is acting in not the expected fashion.  On the other hand, I'm concerned about that becoming an EXCUSE for poor behavior, kwim?  I don't want that excuse thought process either, sigh.  But explanation we needed....

 

 

First, thank you for sharing with us. You've been in my thoughts and prayers the last couple of days as you awaited and processed these test results.

 

I really like what you wrote here. Explanation--not excuse!

[PeterPan]

:grouphug:

 

First, thank you for sharing with us. You've been in my thoughts and prayers the last couple of days as you awaited and processed these test results.

 

I really like what you wrote here. Explanation--not excuse!

Yeah, I just really didn't want to talk about the spectrum label.  It's not like something you go seeking out, kwim?  But when you add two more SLDs on top of the one we already had, THAT I wasn't expecting.  Makes you sorta feel very inadequate.

 

Bonus with the labels is, if it works out like I hope, his scholarship will be high enough that I might have money to pay for the dyslexia tutoring too.  I think it would be good for our relationship and something someone else could do just as well, or even better, at this point.  There's an OG tutor in town I feel confident in, so it's just a matter of the funding.  I had hoped it would start this month, but it may not be till July, sigh, which feels like forever.  On the other hand, this tutor KICKS BUTT.  She has the energy to keep up with him.  

 

So we'll see.  It's all this balancing act of which therapies, which services, how to spread your dollars.  I'm just elated to finally HAVE some dollars and help.  I'm really so over the renaissance woman, learn everything and do it yourself thing.  Call me shuttle mom.

 

[FairProspects]

Yeah, I just really didn't want to talk about the spectrum label.  It's not like something you go seeking out, kwim?  But when you add two more SLDs on top of the one we already had, THAT I wasn't expecting.  Makes you sorta feel very inadequate.

 

Bonus with the labels is, if it works out like I hope, his scholarship will be high enough that I might have money to pay for the dyslexia tutoring too.  I think it would be good for our relationship and something someone else could do just as well, or even better, at this point.  There's an OG tutor in town I feel confident in, so it's just a matter of the funding.  I had hoped it would start this month, but it may not be till July, sigh, which feels like forever.  On the other hand, this tutor KICKS BUTT.  She has the energy to keep up with him.  

 

So we'll see.  It's all this balancing act of which therapies, which services, how to spread your dollars.  I'm just elated to finally HAVE some dollars and help.  I'm really so over the renaissance woman, learn everything and do it yourself thing.  Call me shuttle mom.

 

For starters, you are about the most capable woman I know to handle these dxs, so inadequate, um NO. Your whole process interesting to me because we were also heard the "bright and tight" but *not *ASD, and it makes me wonder where the defining difference lies and whether I should seek a 2nd opinion too? These situations must get very complicated. I guess for us ds is older and the older he gets the more I feel that the "not ASD" part is correct, so maybe there is some mommy gut differences there too? I don't know. So glad for you that you are getting answers and access to funding!

[PeterPan]

For starters, you are about the most capable woman I know to handle these dxs, so inadequate, um NO. Your whole process interesting to me because we were also heard the "bright and tight" but *not *ASD, and it makes me wonder where the defining difference lies and whether I should seek a 2nd opinion too? These situations must get very complicated. I guess for us ds is older and the older he gets the more I feel that the "not ASD" part is correct, so maybe there is some mommy gut differences there too? I don't know. So glad for you that you are getting answers and access to funding!

Hmm, I'm twitching my nose here.  I can tell you what someone told me, that there's a an aspie rainbow within the spectrum rainbow, if that makes sense.  I can tell you I've known plenty of gifted people who were NOT "bright and tight" so that it doesn't hold water with me.  I can tell you our psych didn't run an actual ASD-focused eval on him, didn't listen to us, didn't watch our video footage, didn't listen to our complaints.  I can tell you he didn't spend enough TIME but went on the most cursory, superficial impressions, rather than slowing down and just observing him and working with him for several hours.  I can tell you if you DO slow down and spend time with him and really watch, it's there.  I can tell you I've had multiple parents of kids with aspergers come up to me out of the blue and say it. I've had multiple from the boards here, who read all the same things you read, write me back channel and say it (and say that the 1st psych got it wrong).  I can tell you that people who work with him at the Y see it and use the A word in conversation as a developmental pattern he's following for why they're keeping him in the preschool classes.

 

But yeah, he's complex.  It takes time to sort through.  Maybe your ds has some traits but not enough that it creates a problem in his life?  I think you acknowledge the traits, tally 'em up, and ask what the effect is and whether a label would answer questions, prevent misunderstandings, open doors he needs help to open, or whatever.  If his life is going ok, there are no outstanding questions, he's not hitting walls due to his disability, etc., at some point you go yeah somewhere on the rainbow, got some traits...  

 

I guess main thing would be to get a psych who will slow down and really spend time with him.

[MyLittleBears]

:grouphug:   I think we all been holding our breath for an update. Glad you are finally getting answers that make sense. Good for you that you sought out the info early while he's still little. This will open a lot of doors than if you had taken the "wait and see" approach. Good job mamma!

 

 Our prayers are with you! 

 

 

[Heathermomster]

I don't know if I will ever understand what bright and tight means?  Is that intelligent and rigid thinking/emotional?  What role does the apraxia play?  Does it confound the ASD?  Did any of the nps mention it?

[Crimson Wife]

 Your whole process interesting to me because we were also heard the "bright and tight" but *not *ASD, and it makes me wonder where the defining difference lies and whether I should seek a 2nd opinion too? These situations must get very complicated. I guess for us ds is older and the older he gets the more I feel that the "not ASD" part is correct, so maybe there is some mommy gut differences there too? I don't know. So glad for you that you are getting answers and access to funding!

 

I really think that ASD is a bit of a "junk" label. Not because the kids with the label aren't dealing with real challenges but because it seems to be lumping together a wide variety of underlying issues. I look at the kids I know labeled as having ASD and they're all so different.

 

Some of them come off as "loners" and need a tremendous amount of pushing to engage socially with others. Then you've got my DD who is overly friendly and "in-your-face" about wanting to interact.

 

Some kids with the old label of Asperger's are hyperlexic with an advanced vocabulary and they sound like mini-professors when they talk. Then you've got kids who are non-verbal.

 

There are kids who were developing normally up until a certain point and then experienced a regression. But there are also kids like my DD who showed symptoms from early infancy and have always increased their skills only at a much slower-than-typical rate.

 

It's so clear to me that the medical & psychological establishment has created this "catch all" label that obscures what is going on with the individual children. Hopefully by the time DD2 is an adult there will be a better understanding of her condition such that instead of saying "autism", there will be a more specific name like XYZ Syndrome.

[.Michelle.]

I really think that ASD is a bit of a "junk" label. Not because the kids with the label aren't dealing with real challenges but because it seems to be lumping together a wide variety of underlying issues. I look at the kids I know labeled as having ASD and they're all so different.

 

Some of them come off as "loners" and need a tremendous amount of pushing to engage socially with others. Then you've got my DD who is overly friendly and "in-your-face" about wanting to interact.

 

Some kids with the old label of Asperger's are hyperlexic with an advanced vocabulary and they sound like mini-professors when they talk. Then you've got kids who are non-verbal.

 

There are kids who were developing normally up until a certain point and then experienced a regression. But there are also kids like my DD who showed symptoms from early infancy and have always increased their skills only at a much slower-than-typical rate.

 

It's so clear to me that the medical & psychological establishment has created this "catch all" label that obscures what is going on with the individual children. Hopefully by the time DD2 is an adult there will be a better understanding of her condition such that instead of saying "autism", there will be a more specific name like XYZ Syndrome.

 

I think this is a danger, too.  We held off for some time with getting our child diagnosed.  Not too long.  A diagnosis was made at 30 months, but we were questioning much earlier.  But we told ourselves that he was too affectionate, too snuggly, didn't have a regression, had a history of late talkers in the family...  It is a catch-all and it does obscure the issues of a lot of kids.

[FairProspects]

I don't know if I will ever understand what bright and tight means?  Is that intelligent and rigid thinking/emotional?  What role does the apraxia play?  Does it confound the ASD?  Did any of the nps mention it?

 

Yes, For us it means "cognitively inflexible" or a tendency to stubbornly hold onto the belief that your idea is right, even when you don't know that to be true because you have no real experience with the subject matter, and slow to accept that you were wrong. Overly cocky and positive that you are right and others are wrong. Or maybe that is just being 10 and thinking your mother knows nothing. I have no idea. :p

[texasmama]

Glad you got information, OhE.  And so glad that it will lead to services.  Process as you need here or pm me or others. 

[Crimson Wife]

Yes, For us it means "cognitively inflexible" or a tendency to stubbornly hold onto the belief that your idea is right, even when you don't know that to be true because you have no real experience with the subject matter, and slow to accept that you were wrong. Overly cocky and positive that you are right and others are wrong. Or maybe that is just being 10 and thinking your mother knows nothing. I have no idea. :p

 

Hmm, I know a number of gifted individuals who are stubborn "know-it-alls" but not on the spectrum. They can be quite socially savvy and charming when they're not acting cocky. A lot of lawyers, college professors, physicians, etc. fit this description. High intellect coupled with overly inflated self-confidence ;-)

 

DH's grad school advisor worked for former President Bill Clinton, and apparently he was the WORST for this type of behavior- and nobody would ever confuse Pres. Clinton for being on the spectrum!

[Jennifer-72]

I have been thinking about you as well. I am glad you got some answers. More importantly I am glad you felt heard by the psych. I don't understand how some of these professionals operate when they don't even bother to really listen to what a parent is experiencing. They seem to just nod and listen politely but you know they have completely discounted what you are saying.

 

If I can help I anyway, please let me know! I have lots of experience with my own little complex ds and am happy to pass on anything we found that has worked here.

 

And don't worry you will never use him having asd as an excuse. That is not your style. You will use it to advocate for him in getting services he needs and for communicating with those who run community programs so that he can get any accommodations required to make him more successful. You will also use it to give yourself some grace in parenting him.

[Julie of KY]

So glad you have some answers. Now on with how best to deal with them - you'll be fine, and I don't think you'll let the diagnoses turn into excuses. Sometimes the labels can be very helpful as explanations.

 

[PeterPan]

You will use it to advocate for him in getting services he needs and for communicating with those who run community programs so that he can get any accommodations required to make him more successful. You will also use it to give yourself some grace in parenting him.

This!

[PeterPan]

So glad you have some answers. Now on with how best to deal with them - you'll be fine, and I don't think you'll let the diagnoses turn into excuses. Sometimes the labels can be very helpful as explanations.

I've been thinking about your approach to math lately.  It's funny, because when I was thinking solely in terms of dyslexia and adhd, my thought was just to work hard, hard, hard on the reading to get him caught up and solve the problem!  This new psych was kind of different.  He said not to "exploit the disability" but to feed the gifted side as well, to put him in things where he is normal or that are normalizing for him.  It is a curious balance to me and something I see differently, now that I've talked with him.  It was almost like it's less important how far his reading advances at a rapid pace (though he thinks it should) as it was to find ways to almost make him blossom and normalize.  I think about your dc, and how one is maybe doing Barton and also precalculus, kwim?  

 

I don't know, maybe I haven't understood that correctly?  Is there a philosophical way you've been striking that balance?

[Tokyomarie]

I've been thinking about your approach to math lately.  It's funny, because when I was thinking solely in terms of dyslexia and adhd, my thought was just to work hard, hard, hard on the reading to get him caught up and solve the problem!  This new psych was kind of different.  He said not to "exploit the disability" but to feed the gifted side as well, to put him in things where he is normal or that are normalizing for him.  It is a curious balance to me and something I see differently, now that I've talked with him.  It was almost like it's less important how far his reading advances at a rapid pace (though he thinks it should) as it was to find ways to almost make him blossom and normalize.  I think about your dc, and how one is maybe doing Barton and also precalculus, kwim?  

 

I don't know, maybe I haven't understood that correctly?  Is there a philosophical way you've been striking that balance?

 

Certainly lots to process! But the great thing is that you're getting therapies and dealing with all the needs from a young age. If this is what having the labels allows, then having the labels will be worth it. In the past (and still today in some places), the labels were an excuse to not train and educate a child properly. "Oh, she's special ed, she can't learn how to behave properly. She's not capable of learning how to read. Yada, yada, yada." We do the testing to find out where the glitches are and how best to approach working with that child so they do learn! (commenting from another post on this thread- I think). Especially when children are young, we want to focus hard on the weaker areas. No matter how well a child can decode words, do basic math, or even take an SAT/ACT, if the child cannot function well in a social setting and learn to work as part of a team, all the early academics in the world won't matter. They won't be able to hold a job commensurate with their intelligence. That's way down the road for you but addressing the social thinking/relationship needs now will give your son a better chance to actually use his gifts well.

[Tiramisu]

OhE,

 

I feel like I've known you for so long that your post literally brought tears to my eyes. Grief and relief. I remember back when you were just thinking of another baby, and here you are. Somehow I'm seeing with all of our kiddos here, it always turns out to be what we suspected and more than we expected, if that makes sense.

 

I'll just chime in to agree with all the others. You are awesome and amazing, and while this is hard, your ds is so blessed to have YOU and no one could ever do better than you can.

 

Hugs, hugs, and more hugs!

[wapiti]

ditto what Tiramisu said!

[NikiSC]

I'be been following along with your journey, and I'll just say that your son is lucky to have you on his side.

(((Hugs)))

[OneStepAtATime]

Agree with the others, thank goodness your son (and daughter) have you. Hugs.

[PeterPan]

OhE,

 

I feel like I've known you for so long that your post literally brought tears to my eyes. Grief and relief. I remember back when you were just thinking of another baby, and here you are. Somehow I'm seeing with all of our kiddos here, it always turns out to be what we suspected and more than we expected, if that makes sense.

 

I'll just chime in to agree with all the others. You are awesome and amazing, and while this is hard, your ds is so blessed to have YOU and no one could ever do better than you can.

 

Hugs, hugs, and more hugs!

Yes, that is how it is.  And thanks for the kind words of confidence.  I've honestly been blown away by them (from you and others), because it really doesn't FEEL that way in the moment, lol

 

Certainly lots to process! But the great thing is that you're getting therapies and dealing with all the needs from a young age. If this is what having the labels allows, then having the labels will be worth it. In the past (and still today in some places), the labels were an excuse to not train and educate a child properly. "Oh, she's special ed, she can't learn how to behave properly. She's not capable of learning how to read. Yada, yada, yada." We do the testing to find out where the glitches are and how best to approach working with that child so they do learn! (commenting from another post on this thread- I think). Especially when children are young, we want to focus hard on the weaker areas. No matter how well a child can decode words, do basic math, or even take an SAT/ACT, if the child cannot function well in a social setting and learn to work as part of a team, all the early academics in the world won't matter. They won't be able to hold a job commensurate with their intelligence. That's way down the road for you but addressing the social thinking/relationship needs now will give your son a better chance to actually use his gifts well.

Thanks for affirming this.  It's what I'm hearing from others too, to put a lot of emphasis on social.  Kbutton met with me this weekend and gave me a world shift on how to approach social.  She said to stop thinking of it as a separate session and start bringing it in EVERYWHERE.  Duh, lightbulb moment!!  So kiddie lit is social (which I knew, but do it MORE), and science with social and history for social.  So I walked around the vendor hall and realized how many things really could be social skills if I let them be.  Geography, but focusing on the people.  Greek mythology (people).  Etc. etc.  

 

Yes, he's at a really crunchy stage.  He's so physical/kinesthetic (which in some ways is awesome and a gift), that when he's frustrated or melting down it's really, really awful. It could be worse, obviously, but it was at that point where I'm just honestly glad to be able to have a label in case someone comes up to me and asks why my kid is doing xyz.  Cuz it feels really conspicuous sometimes.  Like this morning at the Y, sigh.