Pink Flags for a reading disability?

[mamashark]

My second daughter will turn 5 in April. She has an expressive speech delay and has been seeing a highly specialized private therapist for a year now, after having used the infants and toddlers county program for a couple years. She's made huge progress since switching to our private therapist. Our SLP is going to do an informal language assessment next week because we are seeing some "pink flags" as she calls them, that have us concerned about what else might be going on.

 

She is bright, (pediatrician has commented on how smart she is when doing basic neurological screenings, but no official neurological evaluation) and she desperately wants to learn. She has been asking for over a year to do school with me and her older sister, and I've been working with her on basic K level math and letters/sounds off and on for a year now. 

 

But I'm starting to see some things that concern me: 

- she's very frustrated with even the simplest task, even if it's the first thing asked of her (so I know it's not fatigue) 

- it takes her a long time to answer simple questions, even non-academic, like, what did you eat for lunch today? (SLP says we are seeing narrative organization sequencing problems)

- we are seeing language issues persist even in structured environments after many many months of work. (pronouns and verbs, sometimes word order in the sentence)

- she can write her name and I have no concerns about her writing development, but she cannot identify more than 3-4 letters by name and can identify only a couple of letter sounds despite working on them off and on over the past year.

- She failed the barton screening test.

- she loves doing math, but still cannot count to 20. (my newly turned 3-year-old son can count better)

 

The bottom line is that she's been asking to learn to read and to "do math", but when she sits down to learn something, any letters or numbers activities that I put together frustrates her and  she doesn't want to do it anymore. I just want her to be able to learn what she wants to, but am unsure how to give her access to those skills.

 

Not sure what I need to look at next, so I was hoping for some guidance from you guys. TIA!

[PeterPan]

My ds was wonky like that, and at 6 when we finally did his psych evals he got SLDs in math, reading, and writing.  You have this problem that some of the interventions will make it harder to diagnose.  In your state, is there funding if she gets the diagnoses?  If so, then wait on unusual interventions until after you do the testing.  If there's no funding at stake, then begin now.

 

When you say expressive language delay *and* sequencing issues *and* wh-question issues, you need to ask the autism question.  Has that been asked?  Has she had a thorough eval?  I would do that at a clinic that specializes in autism.  

 

As for what you do?  I would assume SLDs in every area and teach like they are.  I would put more emphasis on language development and do things at home with her daily for it.  Or at least that's what I do.  Ronit Bird for the math.  LIPS + Barton for the reading.  Things you find on Super Duper for the language.  

 

Remember, it's ok to work on language with play as well.  Do you have other kids or does she have your full attention?  If you have time, we've intentional language work in multiple little ways into your day, the nibbled to death by ducks thing.  There are some board games that are fabulous, fabulous for language.  The Richard Scarry games, Curious George games.  But you can also do stuff like the peg stackers, anything Melissa and Doug.  The MFW preschool cards are terrific.  

 

My ds was functionally hyperlexic, even once we got him reading, because he couldn't understand referents for pronouns, etc. etc.  It was a mess.  We totally had to pause Barton and work on language processing.  In his case, 99th percentile vocabulary but low scores on the CELF.  

 

Ok, I'm going to say this.  Your pink flags are not for reading.  Your pink flags are actual read flags for a bigger developmental problem, and the sooner you get that identified, the sooner you can get funding for that.  There are things like ABA and the VB (verbal behavioral approach) etc. etc. that work on a lot of these skills.  They can quantify them with a standardized tool (the VB-MAPP or ABLLS), so that this doesn't have to be random.  They can actually say yes, these are the holes, and work on them.  

 

Or you can just kinda go along randomly like we did, do that another year, and then go hey I thought it was only dyslexia or whatever and this langauge junk is glitching up EVERYTHING!  Kwim?  Language is where it's at, because without that they're not understanding anything you're doing for school.  It has become a large part of our pre-occupation.  

 

What happened with us is that I chose a psych who was good for the SLDs, got that diagnosed, and then had to do another psych eval to sort out the ASD question.  In your case, you could go ahead and get that developmental question answered by a psych, then get some more evals when she's say 6 or 6 1/2 or 7 to identify the SLDs.  You're not necessarily going to get everything sorted out at once, and waiting doesn't necessarily make either process more ideal.  It's more like how much am I going to have to pay, who can help me, etc.  Our state has funding for disabilities, so there's that process too of going through the ps, getting an IEP, getting things identified.  

 

So yes you should be eval'ing.  It's just a question of when.  I think you could start now, get the developmental questions answered, and get a more full answer on the SLDs with time.  The answer is yes to everything.

 

Fwiw, my ds with 3 SLDs is a blast to teach, other than the bolting and meltdowns and aggression, lol.  We have tons of fun together.  Don't be afraid of it.  Like your dd, he's super bright with a laundry list.  These kids are VERY fun to work with, VERY rewarding, and it will be fine.  Honest.

[SKL]

Sounds like she has some real challenges.

 

While you are working on addressing these, here are some ideas for her to work on for "reading":

• Wordless books - discuss as she is able.
• Rebus readers.  She supplies the words for the pictures.  Eventually she "reads" to you.
• Re-read a simple book many times so she can memorize it and "read" it back to you.
• Self-correcting puzzles for word building, like this: http://www.amazon.com/Melissa-Doug-2940-See-Spell/dp/B0007Y4DLG/ref=sr_1_2?ie=UTF8&qid=1455828801&sr=8-2&keywords=wooden+word+puzzle
• Wiki stix for kinesthetic learning.  http://www.amazon.com/Wikki-Stix-Alphabet-Cards-Learning/dp/B001GIK6EU/ref=sr_1_6?ie=UTF8&qid=1455828952&sr=8-6&keywords=wiki+stix

Your library may have a good supply of these resources.

[MistyMountain]

That sounds like my youngest except she does not have issues answering questions. My dd is almost 5.5 and she is finally learning most letters and their sounds but it was much harder for her then my other two one of whom had a hard time learning to read too. She still has a few left to learn, mostly vowels I do not think she hears correctly. She also had the hardest time counting to 20. She is now better about that but 13 and 14 trip her up I think because they sound alike to her. (I know not saying those sounds is still normal) She also is a bright child otherwise. She is seeing an OT who said she is very bright. I am starting to get quite worried about her and know this will be a long journey. I think I will be trying LIPs with her.

Edited February 19, 2016 by MistyMountain

[kbutton]

How familiar is your SLP with CAPD? You can have SLDs too, but if you have CAPD underneath those, it adds an additional layer of difficulty and frustration. She's too young for most places to be willing to diagnose, but some places with screen with the SCAN-3. You can have all of this without CAPD too, but you might as well be thorough--a lot of the therapies for CAPD overlap with the SLDs and language work, and the screening is one of the more inexpensive kinds of testing.

[mamashark]

Interesting that you bring that up - I've wondered about it myself, but the general sense of her personality is "spacey". She'll simply space out, much like a classic ADD (not hyperactive). But she doesn't seem to have trouble focusing, it's like she has trouble getting her thoughts put together in a way that helps her answer questions/learn etc. I'll ask the SLP about it.

 

How familiar is your SLP with CAPD? You can have SLDs too, but if you have CAPD underneath those, it adds an additional layer of difficulty and frustration. She's too young for most places to be willing to diagnose, but some places with screen with the SCAN-3. You can have all of this without CAPD too, but you might as well be thorough--a lot of the therapies for CAPD overlap with the SLDs and language work, and the screening is one of the more inexpensive kinds of testing.

 

[mamashark]

This is both validating and a little overwhelming! We haven't had a recent autism screening - it was part of the general screening she received that qualified her for speech services at age 2, with the county. At that time they were not concerned and diagnosed her with "expressive speech delay" only. Thank you for the suggestions and ideas, some of that we already do (and I have 4 kids, age almost 8, almost 5, 3 and 8 months).

 

I'm going to have to reread your comments a few times to digest everything, but I wanted to say thanks for the in depth answer, it was very helpful! 

 

 

My ds was wonky like that, and at 6 when we finally did his psych evals he got SLDs in math, reading, and writing.  You have this problem that some of the interventions will make it harder to diagnose.  In your state, is there funding if she gets the diagnoses?  If so, then wait on unusual interventions until after you do the testing.  If there's no funding at stake, then begin now.

 

When you say expressive language delay *and* sequencing issues *and* wh-question issues, you need to ask the autism question.  Has that been asked?  Has she had a thorough eval?  I would do that at a clinic that specializes in autism.  

 

As for what you do?  I would assume SLDs in every area and teach like they are.  I would put more emphasis on language development and do things at home with her daily for it.  Or at least that's what I do.  Ronit Bird for the math.  LIPS + Barton for the reading.  Things you find on Super Duper for the language.  

 

Remember, it's ok to work on language with play as well.  Do you have other kids or does she have your full attention?  If you have time, we've intentional language work in multiple little ways into your day, the nibbled to death by ducks thing.  There are some board games that are fabulous, fabulous for language.  The Richard Scarry games, Curious George games.  But you can also do stuff like the peg stackers, anything Melissa and Doug.  The MFW preschool cards are terrific.  

 

My ds was functionally hyperlexic, even once we got him reading, because he couldn't understand referents for pronouns, etc. etc.  It was a mess.  We totally had to pause Barton and work on language processing.  In his case, 99th percentile vocabulary but low scores on the CELF.  

 

Ok, I'm going to say this.  Your pink flags are not for reading.  Your pink flags are actual read flags for a bigger developmental problem, and the sooner you get that identified, the sooner you can get funding for that.  There are things like ABA and the VB (verbal behavioral approach) etc. etc. that work on a lot of these skills.  They can quantify them with a standardized tool (the VB-MAPP or ABLLS), so that this doesn't have to be random.  They can actually say yes, these are the holes, and work on them.  

 

Or you can just kinda go along randomly like we did, do that another year, and then go hey I thought it was only dyslexia or whatever and this langauge junk is glitching up EVERYTHING!  Kwim?  Language is where it's at, because without that they're not understanding anything you're doing for school.  It has become a large part of our pre-occupation.  

 

What happened with us is that I chose a psych who was good for the SLDs, got that diagnosed, and then had to do another psych eval to sort out the ASD question.  In your case, you could go ahead and get that developmental question answered by a psych, then get some more evals when she's say 6 or 6 1/2 or 7 to identify the SLDs.  You're not necessarily going to get everything sorted out at once, and waiting doesn't necessarily make either process more ideal.  It's more like how much am I going to have to pay, who can help me, etc.  Our state has funding for disabilities, so there's that process too of going through the ps, getting an IEP, getting things identified.  

 

So yes you should be eval'ing.  It's just a question of when.  I think you could start now, get the developmental questions answered, and get a more full answer on the SLDs with time.  The answer is yes to everything.

 

Fwiw, my ds with 3 SLDs is a blast to teach, other than the bolting and meltdowns and aggression, lol.  We have tons of fun together.  Don't be afraid of it.  Like your dd, he's super bright with a laundry list.  These kids are VERY fun to work with, VERY rewarding, and it will be fine.  Honest.

 

[PeterPan]

I took my ds to an audiologist at a university where they have the full equipment do to APD evals right before we had our psych evals.  Definitely agree with Kbutton that it's a thing to eliminate.  In our case, he wasn't responding to people, and it was sort of inexplicable.  With that *plus* the speech problems, we really felt like it was a question we had to answer.  At our univ you can get that eval (basic annual and even a SCAN3 screening portion) for only $35.  At that price, it's easy for me to recommend, kwim?  

 

Yes, if your screening is that old, it's time to have that discussion.  And I think having it in the context of it's time to get some evals and who is the right person to start looking at what we're seeing...  that can be good.  

 

The thing to remember about is that they're NOT about labels.  People think they're about labels and some permanent whatever, but they're really not.  They're about GAME PLAN and getting more information so you can have a better game plan.  So the sooner you eval (with someone who can spend enough time to dig in, not a quickie eval), the sooner you can get that information to formulate a better game plan, kwim?  And some of these places have long waits!  Around here a private psych can be a 6 month wait and the university clinic for autism is a YEAR.  A full year.  And it's ok to be on that list and go wow, don't need that, and cancel, kwim?  But there's nothing worse than realizing you need on that list and having to wait a year.  So I think it's reasonable to get on lists and THEN think and rethink and doubt yourself and question.  My ds had his first psych evals when he was newly 6.  That was good.  But, you know, if you got in now at newly 5 and then redid at say 6 1/2 to look at the SLD questions, that could be good too.  You want more information to make decisions, not less.

[kbutton]

Interesting that you bring that up - I've wondered about it myself, but the general sense of her personality is "spacey". She'll simply space out, much like a classic ADD (not hyperactive). But she doesn't seem to have trouble focusing, it's like she has trouble getting her thoughts put together in a way that helps her answer questions/learn etc. I'll ask the SLP about it.

 

My son with CAPD and ADHD is a lot like this, but the inattention/focus has grown. The spaciness is getting better. He is expressing himself a bit better. But, his language scores are okay, not totally a mess. They aren't at all in the ballpark of his capabilities, but they are in the ballpark of age mates with several on the low side of that. A few in the basement. A few super high. It is hard because it's all kind of mixed up, and while it some will sort itself with age, you don't want to miss a chance to intervene early. Hang in there! 

[OneStepAtATime]

Great responses up thread so I won't repeat those.  I did want to point out that the Barton screening is for kids that are at least 5 years old, preferably 5 1/2, so just for the Barton part she may be too young to pass that screening.  I don't think the Barton screening is going to be a useful assessment at this time, though, regardless of age.  As others have mentioned, there is more going on it seems than just possible dyslexia (which is really what Barton is for).  LiPS might help but more detailed evals would probably help more.  I wouldn't even consider Barton right now.

[mamashark]

Yeah, I realize that she's slightly under the age for the Barton screening - I was just kind of surprised when I randomly asked a few letters today - she was able to identiy E, I, O, S, and A and that's it. When asked what sounds any of them made, she got /s/ and that's it. I was looking for something, anything, that would give me anywhere close to a norm referenced idea of what she should know. 

 

I'm swinging kids in both directions, it seems, as my nearly 8 year old begged to do a "reading test too", so I pulled my QRI-3 book out and had her passing the 6th grade reading sample at an independent level with ease, fluency, expression, comprehension, and a full discussion after the fact about the topic she read. 

 

My husband even asked me tonight whether I was sure that it's not a personality thing. I don't know how much the personality thing can play into it, but I do know that she's wanting to learn and yet nothing is sticking, which is making even simple tasks difficult for her. 

 

Great responses up thread so I won't repeat those.  I did want to point out that the Barton screening is for kids that are at least 5 years old, preferably 5 1/2, so just for the Barton part she may be too young to pass that screening.  I don't think the Barton screening is going to be a useful assessment at this time, though, regardless of age.  As others have mentioned, there is more going on it seems than just possible dyslexia (which is really what Barton is for).  LiPS might help but more detailed evals would probably help more.  I wouldn't even consider Barton right now.

 

[OneStepAtATime]

Yeah, I realize that she's slightly under the age for the Barton screening - I was just kind of surprised when I randomly asked a few letters today - she was able to identiy E, I, O, S, and A and that's it. When asked what sounds any of them made, she got /s/ and that's it. I was looking for something, anything, that would give me anywhere close to a norm referenced idea of what she should know. 

 

I'm swinging kids in both directions, it seems, as my nearly 8 year old begged to do a "reading test too", so I pulled my QRI-3 book out and had her passing the 6th grade reading sample at an independent level with ease, fluency, expression, comprehension, and a full discussion after the fact about the topic she read. 

 

My husband even asked me tonight whether I was sure that it's not a personality thing. I don't know how much the personality thing can play into it, but I do know that she's wanting to learn and yet nothing is sticking, which is making even simple tasks difficult for her. 

:grouphug:

 

Its great that she wants to learn.  I hope you can find what may be causing the trip ups while helping her maintain that enthusiasm.  Good luck and best wishes.  

[Crimson Wife]

The CTOPP is normed down to age 4 and if she has enough receptive language to understand the tasks (my DD could only do certain subtests last summer at 6.5), that would let you know if she has phonological processing difficulties. The SLP should be able to run one for you.

[ElizabethB]

Have you tried the Talking Letter Factory DVD?

[mamashark]

Have you tried the Talking Letter Factory DVD?

 

She watched that (and the other leap frog videos) probably a year ago - when my son napped we used to be able to watch shows like that but since he dropped his nap I can't turn on the tv much at all anymore because it makes him really irritable and he throws some crazy fits. So, I avoid the tv as much as possible now. 

[geodob]

What you've described, could be a 'word retrieval' difficulty?

Though the test for this is quite simple, which you could do yourself.

Which is called the 'Rapid Naming Test'.

This has 2 tests, 

One test involves pointing at letters and numbers, and seeing how quickly she can name them?

Which is basically what you've already been doing.

 

But the other test, uses objects or photos of objects, of things that she knows.

Where you point at them, and see how quickly she can name them?

 

If she has a difficulty with this, then it would carry over to numbers and letters.

So perhaps you try this, and see how she goes with it?

[PeterPan]

Ok, I'm just going to be irritable for a minute and point out that there's MUCH more detailed language testing than this and that we don't have to be simplistic.  Naming is an issue in autism.  But you can't establish with one "rapid naming test" whether the issue is the rapidity or the naming, whether there would have been the skill receptively but not expressively, whether she has an SLD impacting her ability to do the task, etc. etc.  

 

So get the CELF, get a proper psych eval, get it sorted out.  Some kids who are labeled "expressive language delay" have praxis going on and aren't properly diagnosed.  Sure there would be word retrieval issues and lexicon and more with apraxia, yes.  But since many SLPs can't sort out what is a delay and what is praxis, you're not getting even THAT question answered. 

 

Without complete evals, she actually has NO clue what's going on.  The only thing she can be sure of is that at this point her answers are incomplete.

Edited February 21, 2016 by OhElizabeth

[PeterPan]

She watched that (and the other leap frog videos) probably a year ago - when my son napped we used to be able to watch shows like that but since he dropped his nap I can't turn on the tv much at all anymore because it makes him really irritable and he throws some crazy fits. So, I avoid the tv as much as possible now. 

That's sort of interesting in the way that makes my eyebrows go up.  How old is he?  My ds wouldn't watch tv when he was young.  His ADHD-combined part of his diagnosis gets him there, along with his comprehension issues.  He wasn't understanding anyway, and he was so active that it was like why bother.  So if *my* ds has behavior like that, it's attention-seeking behavior.  I would encourage you to look for the *function* of that behavior.  Just saying.  

 

We've had to work with him and give him alternative activities or play puzzles with him and teach him the expected behavior.  Otherwise, we can't even watch tv as a family, kwim?  I'm not saying you're not doing enough, lol.  I'm just saying if the function of the behavior is attention-seeking and you DO that, then you reinforce that it's a way to get your attention.  So we watch *less* tv as a family, but when we *do* we require the expected behavior and structure things to make that happen.  We keep a play area adjacent with the light on. We bring in puzzles and sit on the floor with him.  We have mandatory stopping with the remote if he starts talking.  That kind of thing.  But the first thing is to see the function of the behavior.

 

Letter Factory is cute, but it was never anything my ds could actually learn from.  That implies the ability to imitate.  Nothing about that was within reach.  He needed LIPS + Barton.  To watch a video and have things click in his mind was just not where he was.  I know I hear about people using it a lot on the boards, which is why I bought it.  Some kids just aren't going to get that click from it.  For my ds, combining his speech therapy with LIPS with Barton in a hands-on, explicit way got the click.

Edited February 21, 2016 by OhElizabeth

[mamashark]

He's 3, and we've been working on his behavior for a year. It's exhausting but we are doing all we can to teach appropriate behavior. We've just seen the fits increase after screen time, so we are avoiding it for now until he gains some maturity.

 

With regards to Eliana, I remembered yesterday that I was trained in Orton gillingham something like 12 years ago so I went and dug out my materials and am trying to get back up to speed. I'm going to discuss more in depth testing with both the slp this week and with the Pediatrician the next time we are there.

 

I feel like I'm at least heading in the right direction, and am not crazy to be concerned about what I'm seeing.

Edited February 21, 2016 by mamashark

[Crimson Wife]

Ok, I'm just going to be irritable for a minute and point out that there's MUCH more detailed language testing than this and that we don't have to be simplistic.  Naming is an issue in autism.  But you can't establish with one "rapid naming test" whether the issue is the rapidity or the naming, whether there would have been the skill receptively but not expressively, whether she has an SLD impacting her ability to do the task, etc. etc. 

 

I agree with this. The RAN/RAS can be a helpful test but the child has to be able to identify whatever stimuli is used, and that's where receptive language testing is important.

 

[PeterPan]

He's 3, and we've been working on his behavior for a year. It's exhausting but we are doing all we can to teach appropriate behavior. We've just seen the fits increase after screen time, so we are avoiding it for now until he gains some maturity.

 

With regards to Eliana, I remembered yesterday that I was trained in Orton gillingham something like 12 years ago so I went and dug out my materials and am trying to get back up to speed. I'm going to discuss more in depth testing with both the slp this week and with the Pediatrician the next time we are there.

 

I feel like I'm at least heading in the right direction, and am not crazy to be concerned about what I'm seeing.

I would get him screened.  It's the degree that tells you it's not within the realm of normal.  It's not you.  It's like when someone met me (after only corresponding online), and she's like WOW, what you're putting up with.  You get so used to it, you don't realize how much you're compensating. 

 

That's awesome that you have OG training as part of your tools to pull out!  :D

Edited February 21, 2016 by OhElizabeth

[Crimson Wife]

 

So get the CELF, get a proper psych eval, get it sorted out.  Some kids who are labeled "expressive language delay" have praxis going on and aren't properly diagnosed.  Sure there would be word retrieval issues and lexicon and more with apraxia, yes.  But since many SLPs can't sort out what is a delay and what is praxis, you're not getting even THAT question answered.

 

The big problem I have with SLP training is that it's very "jack-of-all-trades", the equivalent of family medicine for a MD. We expect primary care physicians to refer out to specialists as appropriate rather than trying to handle everything themselves. IMHO that's what needs to happen with SLP.

 

Right now the onus is on the patient's family to locate someone with specialized training and experience in whatever the specific issue is (apraxia, hearing loss, ASD & "Social Communication Disorder", neurological trauma rehab, swallowing, etc.) I'd have to know as a parent that I should be looking for certification in PROMPT/Auditory-Verbal Therapy/Hanen/Social Thinking/etc./etc. in my child's SLP. Only the savviest parents are going to be able to find the specialized clinics.

 

The American Speech-Language-Hearing Association is starting to offer specialty certifications but right now they only certify for fluency/stuttering, swallowing, "intraoperative monitoring" for audiologists, and "child language disorders", which IMHO is WAAAAAAY too broad. There needs to be a bunch more specialty certifications added and a revamping of SLP training to emphasize the responsibility of a generalist SLP to refer out complex cases as clinically appropriate.

[mamashark]

I would get him screened.  It's the degree that tells you it's not within the realm of normal.  It's not you.  It's like when someone met me (after only corresponding online), and she's like WOW, what you're putting up with.  You get so used to it, you don't realize how much you're compensating. 

 

That's awesome that you have OG training as part of your tools to pull out!   :D

 

Screened for what, exactly? (Don't mean to be purposefully dense, I just want to know exactly what you see in his behavior) He is my Jekyll and Hyde child - much of the time he's an amazing, polite, sweet little boy who turns heads due to his manners. Then if something sets him off, he's inconsolable. I have to put him in his room and hold the door shut for a couple minutes to allow him to calm down. If we can find the "switch" for the fit, he flips almost dizzyingly back to sweet and nice and compliant, but the switch is always something different.

 

I recently had a very in depth conversation with the pediatrician about his behavior (just a week ago), and she was surprised at the intensity of the behavior and the longevity (he's been this way for a long time, it's not new behavior). She didn't seem concerned about it, though, and said that by the time he's 4, he should have matured out of a lot of it and to just persevere through and remain consistent in discipline, not give in to his fits, etc. 

 

He's not showing signs of other developmental delays - his fine motor skills are ahead of his age, he's coordinated and solid with his gross motor skills, he has appropriate language for his age, he's completely potty trained without issue, etc.

[mamashark]

The big problem I have with SLP training is that it's very "jack-of-all-trades", the equivalent of family medicine for a MD. We expect primary care physicians to refer out to specialists as appropriate rather than trying to handle everything themselves. IMHO that's what needs to happen with SLP.

 

Right now the onus is on the patient's family to locate someone with specialized training and experience in whatever the specific issue is (apraxia, hearing loss, ASD & "Social Communication Disorder", neurological trauma rehab, swallowing, etc.) I'd have to know as a parent that I should be looking for certification in PROMPT/Auditory-Verbal Therapy/Hanen/Social Thinking/etc./etc. in my child's SLP. Only the savviest parents are going to be able to find the specialized clinics.

 

The American Speech-Language-Hearing Association is starting to offer specialty certifications but right now they only certify for fluency/stuttering, swallowing, "intraoperative monitoring" for audiologists, and "child language disorders", which IMHO is WAAAAAAY too broad. There needs to be a bunch more specialty certifications added and a revamping of SLP training to emphasize the responsibility of a generalist SLP to refer out complex cases as clinically appropriate.

 

I agree with the frustration about SLP training vs. specialists in various areas. We have been through a couple of the run of the mill SLPs and the lady we see now is highly specialized and has many of the training's you mention here. I found her by running several rabbit trails and contacting her with very specific questions about the issues we needed addressed. In fact, I had learned so much about the issues we were facing that she asked me if I myself was an SLP because of how specific I was in my questions. This lady is amazing and her skill level is so far above the other SLPs I've worked with, it's been a true blessing for our family. The irony is that she doesn't advertise - she said the moms who need her, find her, and her schedule is full. She also has a huge network of professionals she works with and is one who does refer out all the time. I've been to several different specialists on her recommendation for things beyond the scope of her training with great success.

[Crimson Wife]

Screened for what, exactly? (Don't mean to be purposefully dense, I just want to know exactly what you see in his behavior) He is my Jekyll and Hyde child - much of the time he's an amazing, polite, sweet little boy who turns heads due to his manners. Then if something sets him off, he's inconsolable. I have to put him in his room and hold the door shut for a couple minutes to allow him to calm down. If we can find the "switch" for the fit, he flips almost dizzyingly back to sweet and nice and compliant, but the switch is always something different.

 

I recently had a very in depth conversation with the pediatrician about his behavior (just a week ago), and she was surprised at the intensity of the behavior and the longevity (he's been this way for a long time, it's not new behavior). She didn't seem concerned about it, though, and said that by the time he's 4, he should have matured out of a lot of it and to just persevere through and remain consistent in discipline, not give in to his fits, etc. 

 

He's not showing signs of other developmental delays - his fine motor skills are ahead of his age, he's coordinated and solid with his gross motor skills, he has appropriate language for his age, he's completely potty trained without issue, etc.

 

Could be high-functioning autism. My HFA child does have language delay but some kids are hyperlexic. My DD's motor skills are at or above age-level. She can be sweet and affectionate until something causes a meltdown (which fortunately happens a LOT less frequently since she's been receiving Applied Behavioral Analysis therapy). I always think of that poem "Jemima" about the little girl who had a little curl right in the middle of her forehead.

 

When she was good, she was very, very, good

But when she was bad, she was horrid.

[kbutton]

Screened for what, exactly? (Don't mean to be purposefully dense, I just want to know exactly what you see in his behavior) He is my Jekyll and Hyde child - much of the time he's an amazing, polite, sweet little boy who turns heads due to his manners. Then if something sets him off, he's inconsolable. I have to put him in his room and hold the door shut for a couple minutes to allow him to calm down. If we can find the "switch" for the fit, he flips almost dizzyingly back to sweet and nice and compliant, but the switch is always something different.

 

I recently had a very in depth conversation with the pediatrician about his behavior (just a week ago), and she was surprised at the intensity of the behavior and the longevity (he's been this way for a long time, it's not new behavior). She didn't seem concerned about it, though, and said that by the time he's 4, he should have matured out of a lot of it and to just persevere through and remain consistent in discipline, not give in to his fits, etc. 

 

He's not showing signs of other developmental delays - his fine motor skills are ahead of his age, he's coordinated and solid with his gross motor skills, he has appropriate language for his age, he's completely potty trained without issue, etc.

 

I could say pretty much all of this about my son at that age. It does turn out that he has mild motor issues (fine and gross), but he was the kid that had mad motor skills in some areas, and the rest we chalked up to lack of interest (also turned out later to be partially an ocular motor issue developing). He learned to knit at 4 (basic stitch back and forth), but scissors and coloring? HA! Childproofing was a total joke because he could open anything (including most childproof bottles) and get in and out of his car seat by himself at less than two, but he couldn't use utensils very well to eat.

 

He was a model citizen one minute and destined for reform school the next, and people were quite open about saying so--sometimes the same mouths said both things a week apart.

 

Could be high-functioning autism. My HFA child does have language delay but some kids are hyperlexic. My DD's motor skills are at or above age-level. She can be sweet and affectionate until something causes a meltdown (which fortunately happens a LOT less frequently since she's been receiving Applied Behavioral Analysis therapy). I always think of that poem "Jemima" about the little girl who had a little curl right in the middle of her forehead.

 

When she was good, she was very, very, good

But when she was bad, she was horrid.

 

:iagree:  Yep. Mine got his ASD diagnosis at almost 9.

[kbutton]

If we can find the "switch" for the fit, he flips almost dizzyingly back to sweet and nice and compliant, but the switch is always something different.

 

Does he frequently misunderstand random stuff? That's a lot of what happened with my kiddo. He would miss the significance of something, or attach significance to something that was very unique to him, not something that other people would really think. If we stumbled onto a reason for something and then articulated it, he would show a physical response of relief, but if we didn't figure it out, he'd just be upset. Asking did nothing unless the question accidentally supplied him with the answer. Once we had a diagnosis, we started to realize just how much he was going with the flow and sort of understanding things, but we had to find the right way to test this and figure it out because asking didn't do a lot. It's much better now that he knows what's going on and has a lot more background information (he needed lots of data and help sifting it to make sense of things). Small wonder he was so frustrated! We refer to this as his needing to see all 360 degrees of something (concept, situation, task, etc.) before he truly gets it. Otherwise, when you turn the concept 4 degrees counterclockwise, all bets are off that he realizes it's the same thing anymore! 

[mamashark]

Could be high-functioning autism. My HFA child does have language delay but some kids are hyperlexic. My DD's motor skills are at or above age-level. She can be sweet and affectionate until something causes a meltdown (which fortunately happens a LOT less frequently since she's been receiving Applied Behavioral Analysis therapy). I always think of that poem "Jemima" about the little girl who had a little curl right in the middle of her forehead.

 

When she was good, she was very, very, good

But when she was bad, she was horrid.

Lol, I've not read that poem, I need to find it - that's the best description I've seen yet of how my son acts!

 

 

Does he frequently misunderstand random stuff? That's a lot of what happened with my kiddo. He would miss the significance of something, or attach significance to something that was very unique to him, not something that other people would really think. If we stumbled onto a reason for something and then articulated it, he would show a physical response of relief, but if we didn't figure it out, he'd just be upset. Asking did nothing unless the question accidentally supplied him with the answer. Once we had a diagnosis, we started to realize just how much he was going with the flow and sort of understanding things, but we had to find the right way to test this and figure it out because asking didn't do a lot. It's much better now that he knows what's going on and has a lot more background information (he needed lots of data and help sifting it to make sense of things). Small wonder he was so frustrated! We refer to this as his needing to see all 360 degrees of something (concept, situation, task, etc.) before he truly gets it. Otherwise, when you turn the concept 4 degrees counterclockwise, all bets are off that he realizes it's the same thing anymore! 

 

I don't know that his trigger is misunderstanding, but I can watch for that. It's almost more of an oppositional defiance issue. If we ask him to do something that he just doesn't want to do, he'll either shut down (eyes down, shoulders slumped, no response - this happens a lot in public when strangers talk to him or when people he knows ask him a question), or he'll throw a fit (this tends to happen when we require obedience.) It's not that he doesn't understand the commands, he'll just not want to comply.

 

I may be showing my ignorance here, but I thought ASD was characterized by lack of social skills with peers? He's never showed any issues playing with anyone - in fact he's the one who preferred to play with people from a very young age. He'd play with adults when his attempts to play with other kids his age failed (who were not developmentally ready to play with - they were still in side by side play stage). He also has no problems with eye contact when he's "good". When he is in shut down mode he wont look at you, but it's like a silent fit (and I almost prefer the silent fits!)

 

Also, this is the kid who would test what kinds of fits were the most effective from infancy - he would go through a phase of different types of "fit throwing" and after a few weeks or months, would move onto another type of fit. The most memorable being the breath holding fit - one time and I figured it out. After I knew what he was doing, I actually liked those fits because he would hold his breath, which took all his focus, so I could change his diaper quick, then by the time he turned blue and his automatic breathing reflex kicked in, we were finished changing him and I we could move on. There was another phase where I was always covered in bruises because he would kick and hit while I tried to change his diaper, and it felt like I was wrestling a kangaroo! Anyways, his current fit method is to shut down and not respond, or to lay on the floor, and scream and sob hysterically. We ignore the behavior most of the time, other times we will try to talk to him until we figure out a trigger that flips his switch, and then he's back to polite and wonderfully nice again! (And sometimes the trigger is stupid simple like "will you please let the dog inside?")

[PeterPan]

The big problem I have with SLP training is that it's very "jack-of-all-trades", the equivalent of family medicine for a MD. We expect primary care physicians to refer out to specialists as appropriate rather than trying to handle everything themselves. IMHO that's what needs to happen with SLP.

 

Right now the onus is on the patient's family to locate someone with specialized training and experience in whatever the specific issue is (apraxia, hearing loss, ASD & "Social Communication Disorder", neurological trauma rehab, swallowing, etc.) I'd have to know as a parent that I should be looking for certification in PROMPT/Auditory-Verbal Therapy/Hanen/Social Thinking/etc./etc. in my child's SLP. Only the savviest parents are going to be able to find the specialized clinics.

 

The American Speech-Language-Hearing Association is starting to offer specialty certifications but right now they only certify for fluency/stuttering, swallowing, "intraoperative monitoring" for audiologists, and "child language disorders", which IMHO is WAAAAAAY too broad. There needs to be a bunch more specialty certifications added and a revamping of SLP training to emphasize the responsibility of a generalist SLP to refer out complex cases as clinically appropriate.

AMEN.

 

Edited February 21, 2016 by OhElizabeth

[PeterPan]

 

Also, this is the kid who would test what kinds of fits were the most effective from infancy - he would go through a phase of different types of "fit throwing" and after a few weeks or months, would move onto another type of fit. The most memorable being the breath holding fit - one time and I figured it out. After I knew what he was doing, I actually liked those fits because he would hold his breath, which took all his focus, so I could change his diaper quick, then by the time he turned blue and his automatic breathing reflex kicked in, we were finished changing him and I we could move on. There was another phase where I was always covered in bruises because he would kick and hit while I tried to change his diaper, and it felt like I was wrestling a kangaroo! Anyways, his current fit method is to shut down and not respond, or to lay on the floor, and scream and sob hysterically. We ignore the behavior most of the time, other times we will try to talk to him until we figure out a trigger that flips his switch, and then he's back to polite and wonderfully nice again! (And sometimes the trigger is stupid simple like "will you please let the dog inside?")

My ds is *extremely* self-determinate.  That's what we called it for years.  Now he has an ASD diagnosis.  

 

I suggest you get a behaviorist.  That behavior is SO far out of the realm of acceptable.  You need better tools.  You've already tried random good parenting, and you need some help to step it up.  

 

Here's the gig.  You're like oh he's only 3.  It's not going to be so easy when he's 6 or 7 or 8 and still doing this.  And that's pretty deprecating (on the part of the doc) to saying this is just a nothing and goes away.  Maybe it does in some kids.  Just saying that wasn't my reality.  

 

You already have one dc with some SN.  Maybe he's just super bright and not going to get a diagnosis.  Or maybe he is.  Either way you need some tools.

Edited February 21, 2016 by OhElizabeth

[kbutton]

Don't take my responses at counterpoints, because I do not know your son. But I can answer some of what that stuff meant in our house.

 

I don't know that his trigger is misunderstanding, but I can watch for that. It's almost more of an oppositional defiance issue. If we ask him to do something that he just doesn't want to do, he'll either shut down (eyes down, shoulders slumped, no response - this happens a lot in public when strangers talk to him or when people he knows ask him a question), or he'll throw a fit (this tends to happen when we require obedience.) It's not that he doesn't understand the commands, he'll just not want to comply. We got defiance when we triggered anxiety. But it sure looked like defiance to nearly any audience. It did respond to lowering the stakes, etc.--things that would help anxiety. Sometimes, going head-to-head helps, but it's important to choose carefully. This is where 2e comes in for us, and we have someone we can't talk to about when he's being a stinker and when he's being Aspie.  Also, misunderstanding is a relative term--my son can parse out what we mean, but he doesn't do stuff on command; only when it makes sense to him. So, if he thinks doing x would be better than y from his limited point of view, good luck getting him to do x. Arguing is optional--sometimes he would, sometimes not. 

 

I may be showing my ignorance here, but I thought ASD was characterized by lack of social skills with peers? He's never showed any issues playing with anyone - in fact he's the one who preferred to play with people from a very young age. He'd play with adults when his attempts to play with other kids his age failed (who were not developmentally ready to play with - they were still in side by side play stage). He also has no problems with eye contact when he's "good". When he is in shut down mode he wont look at you, but it's like a silent fit (and I almost prefer the silent fits!) At this age, the jury is out on social stuff. It really is. I could say pretty much all of this about my son at that age. (And others who don't have kids with autism probably have this at times too--it's not a definitive thing right now.) Peer play is just unreliable at this age, particularly if you have a smart kid who has learned that adults know the interesting stuff that other kids don't yet know. Eye contact is iffy--some kids with autism have mostly good eye contact. My son's varies from situation to situation and person to person, but it could be a lot worse, for sure. That was one "objection' people had about him and the diagnosis. It is also interesting that you use the term shut down (could be telling). 

 

Also, this is the kid who would test what kinds of fits were the most effective from infancy - he would go through a phase of different types of "fit throwing" and after a few weeks or months, would move onto another type of fit. The most memorable being the breath holding fit - one time and I figured it out. After I knew what he was doing, I actually liked those fits because he would hold his breath, which took all his focus, so I could change his diaper quick, then by the time he turned blue and his automatic breathing reflex kicked in, we were finished changing him and I we could move on. There was another phase where I was always covered in bruises because he would kick and hit while I tried to change his diaper, and it felt like I was wrestling a kangaroo! Anyways, his current fit method is to shut down and not respond, or to lay on the floor, and scream and sob hysterically. We ignore the behavior most of the time, other times we will try to talk to him until we figure out a trigger that flips his switch, and then he's back to polite and wonderfully nice again! (And sometimes the trigger is stupid simple like "will you please let the dog inside?") Mine might not be able to explain cause and effect, but he exploited it to the full extent of his IQ and imagination. "Well, this approach worked until it didn't, so let's try another one..." So, something like letting the dog inside is an interruption that sets him straight? Is it a distraction? Is it giving him some kind of control--like maybe he is only allowed to let the dog in with your permission? Or maybe only allowed to open the door with permission? My son thrived on a "sense" of control and autonomy. He really thought he was an adult like us until we had another child, and then he figured out the parent/child thing to some extent.

 

2e autism can be really well camouflaged at times. When it was first mentioned to us, I gave a lot of similar, "but he does this" answers. Not saying that your answers aren't precisely correct because they might be. Then we heard a speaker at a homeschool convention talk about 2e autism, and the lightbulbs went off all over the place. The presenter might as well have titled her talk "2e Autism Mythbusters, Episode 1." She talked about other 2e stuff, but my husband and I KNEW that's exactly what we were dealing with when we left the presentation, lol! (And identified to each other a couple of other kids we know that have since gotten diagnoses or are at least doing related therapies--two families we're not in touch with, but we've heard things that suggest they are seeking help for similar issues.)

[PeterPan]

That thing of not understanding authority is big here too.  It was something we just couldn't explain away because it was SO weird and SO glaring.  When he was telling me he obeys dh because dh is bigger, blah blah.  

 

You might consider how he is for sensory, like whether he's hyper-sensitive or noticeably under-sensitive to things or maybe even a mix.  

[Crimson Wife]

I was so certain that my DD was "too social" to have ASD because she is outgoing and really wants to interact with others. I chalked up the social difficulties to the language delay. But what I did not realize is that those with HFA/Asperger's (especially girls) can present very differently than the stereotype of the loner lost in his/her own world.

[kbutton]

I was so certain that my DD was "too social" to have ASD because she is outgoing and really wants to interact with others. I chalked up the social difficulties to the language delay. But what I did not realize is that those with HFA/Asperger's (especially girls) can present very differently than the stereotype of the loner lost in his/her own world.

 

Some ASD kids really like to be intrusive, uh, I mean social, to micromanage the world. It gives them a sense of control (until they realize no one's listening, lol). My son is either trying to get everyone to do what they are supposed to do, or he gives up and jettisons all semblance of following rules. Nothing like black and white thinking to make things interesting.

 

They are all atypical socially, but not all are unsocial, if that makes sense.

 

My son was part of enrichment class that involved building robots (ages in the class were 10-14, I think). Another mom of an ASD kiddo and I identified at least a third kiddo in the class with ASD--there may have been more. All three of our kids presented differently. One was apt to take over the project if someone didn't find a way to monitor turn taking or if his partner didn't take initiative. Otherwise, he mostly blended in. One loudly declared that he's not so great at group work, and he'd prefer to work alone. If overwhelmed, he would walk away or leave early. He mostly did his own thing, but he competed in the competition at the end of class. He did talk a bit to the other kids, but talking wasn't really his thing. The third kiddo made a robot (not sure if he had a partner or insisted on doing things solo). He did not really put his robot into the thick of things at the end of class, but he did run it around the room. He was a butterfly--all over, talking at (not to) people, but it wasn't readily apparent because he was narrating the play-by-play of the main event like a sportscaster in a way that was totally charming.

[mamashark]

well, I've got a lot more than I bargained for in this conversation, huh?

 

I should probably include the fact that when he was 2, he had a strange, non-verbal thing he did, which is how we found our current SLP. She had him talking within 2 weeks. It was like watching magic take place. Anyway, at his initial screening with infants and toddlers, they told me it wasn't autism. (A note of interest with their screening - they wanted him to nest several cups together, and tried several times to get him to do this, but he discovered that the cups had a small lips and he could build a tower with them, so he would just build the tower over and over again. They marked it down as unable to complete the task. I thought that was a bit ridiculous because he had discovered a completely different use for the nesting cups, but whatever.) When we ditched the state SLP and went private, I told her that someone had mentioned autism to me and she said that she also disagreed. 

 

Now - not saying that means he doesn't have it, just saying I was told twice that he doesn't, so that's why it wasn't on my radar. That said, I've also been told several times by different professionals that he's really smart, his receptive language was really high from really young. 

Anyway, what does a screening look like, and If I wanted to get him screened, who would I take him to? I suppose the benefit to knowing one way or another would be to understand what interventions would work best?

[Crimson Wife]

You want a M.D. to either give or confirm the diagnosis in order to get the services funded through insurance and to apply for SSI and the Medicaid waiver (which picks up deductibles and co-pays for the child). Developmental pediatricians, child psychiatrists, and pediatric neurologists all have the relevant training to diagnose ASD. A PhD./PsyD. psychologist can also diagnose but a younger child often can't do the sort of in-depth psychoeducational testing that makes it worth seeing one for at an older age. Plus you'd still need to see a M.D. for confirmation of the diagnosis.

 

My DD saw a developmental pediatrician for the initial diagnosis at 2 years 10 mos. and then had neuropsychological testing at 6 1/2.

[Innisfree]

About HFA going undetected: here's a story I muse about.

 

When my oldest dd was about 18 months old she stopped talking. The pediatrician said it was probably nothing, but to have her evaluated. The evaluators said she was clearly bright and social and there was nothing to worry about, and she was soon talking a blue streak.

 

As she got bigger I thought I might be seeing some sensory issues, but I had the notion that was really really rare, and I had no idea it had anything to do with autism. And anyway, dd was clearly bright and social and her preschool teachers commented on how mature she was, and by that time I had a baby who was becoming an increasingly difficult toddler and then preschooler.

 

Soon we were deep in the jungle of trying to find a diagnosis for younger dd, which took years, because no one we took her to mentioned autism. ODD was the first diagnosis, because the behavior sure as heck looked oppositional. Thank goodness our older dd was so patient and helpful and bright and social; we relied on her tolerance and understanding a lot.

 

And now we have an autism diagnosis for younger dd, who is 11, and most days are better though we still have some doozies. And her older sister, who in some ways was sidelined by this process, is 13. And when I have issues with dd13, know what I find myself thinking?

 

"My gosh, doesn't she see how black and white her thinking is?"

 

"She really is extremely sensitive to noises in her environment."

 

"She has a really hard time when her expectations don't materialize."

 

It really is a spectrum, and it often doesn't look the way we expect.

[Innisfree]

One more note: both my girls always made eye contact with all of us. It came as a real shock to be told dd11 wasn't making eye contact with others. I mean, I knew she was shy, but no eye contact in a clinically significant way? I didn't see it. And it wasn't until I was discussing dd11's diagnosis with her sister last year that dd13 said "But I don't like to make eye contact with people either."

[Lecka]

EI told me my son didn't have autism when he was around that age, too.

 

Unfortunately they were not basing this opinion on any real criteria, they just had a feeling about him.

 

Well -- it turned out he does have autism.

 

Partly they didn't spend enough time with him, partly he changed as he got a little older, and partly they were looking for just a couple of stereotypes that are not characteristics my son has ever had.

 

So I have to say, take what EI has said with a grain of salt, even if they seem really good. I think the people I saw were good in every other way, but they were not correct when they told me that.

Edited February 22, 2016 by Lecka

[mamashark]

EI told me my son didn't have autism when he was around that age, too.

 

Unfortunately they were not basing this opinion on any real criteria, they just had a feeling about him.

 

Well -- it turned out he does have autism.

 

Partly they didn't spend enough time with him, partly he changed as he got a little older, and partly they were looking for just a couple of stereotypes that are not characteristics my son has ever had.

 

So I have to say, take what EI has said with a grain of salt, even if you are satisfied with your experience with them in other ways.

 

Lol, I was unsatisfied with just about everything they did- from their evaluation to their SLP services to their ability to handle my concerns when I started pushing for real answers. I finally just had to cut ties with them altogether. It wasn't worth my time even if the service was free! I suppose that means I shouldn't trust a non-diagnosis from them anymore than I could trust their actual diagnosis. I will have to talk to some people and see what I can figure out, my husband is very against the idea that there is anything wrong with our son, and so I may have difficulty getting him to agree to an evaluation right now. 

[kbutton]

I will have to talk to some people and see what I can figure out, my husband is very against the idea that there is anything wrong with our son, and so I may have difficulty getting him to agree to an evaluation right now. 

 

This is not unusual, and it can take some time (and careful education). 

[Crimson Wife]

 my husband is very against the idea that there is anything wrong with our son, and so I may have difficulty getting him to agree to an evaluation right now. 

 

My DH was in denial for years that DD had any issues beyond just the language delay. Didn't matter that 4 different evaluations (developmental pediatrician, school district IEP team, Regional Center psychologist, and pediatric neurologist) all agreed that she had HFA. It didn't help that the general pediatrician questioned the diagnosis at first (she later said that she could see the symptoms).