Would love your advice

[Lots of boys]

My youngest son is 7 turning 8 in a couple months. At 18 months we took him to early intervention because he was so quiet, had no words, etc. He was referred to an SLP and was diagnosed with Apraxia shortly after age 2. He had fairly intensive speech therapy from age 2-5. We took him to a Neuropsych at age 4 for an autism evaluation and he was also diagnosed with Autism. At that point, I quit my job to stay home and homeschool all of my boys.

 

I am now feeling overwhelmed about how to help him with his reading. We are using Dancing Bears everyday, using ETC, using BOB readers and I See Sam Readers. We also use CLE gr. 1 Language Arts. I certainly have seen some improvement but it is really slow and often progress is forgotten with any sort of break (we just stopped for a short spring break because my husband was home from work and he forgot a lot). He can read the word RAT several times on a page or over many pages and has to sound it out each time (Rrrrrr-aaaaaa-tttt). He struggles with vowel sounds ALL THE TIME. He knows all the sounds of letters, but has trouble recalling them when reading. He has trouble saying what he wants to say. He often reads ON as NO or the morpheme EW as WE. He often gives letters different sounds when in a word although when you ask him to tell you what that letter says in isolation he knows. He still messes up d and b or even D and B a lot.

 

He also struggles with verbal comprehension. If we are watching a cartoon, and everyone laughs, he often needs an explanation for why everyone laughed. His comprehension goes way down when there are any distractions. I know this is common but I mean ANY distractions. He often needs things explained to him several times or in a different ways or numerous times before he understands.

 

He is a sweet little guy that wants to read but has started to assume it is something he just can't do. It feels like walking through quicksand everyday trying to help him. He is such a sweet little guy and I feel him losing hope and watching his brothers excel and feeling like it just isn't for him.

 

Now that I am not working finances are really tight and although I suspect getting him tested again for academic/SLD issues would be helpful, we aren't really in a position to do so.

 

Any advice?

Edited March 21, 2016 by Lots of boys

[OneStepAtATime]

Well, honestly you might consider, if and when finances allow it, getting a hearing evaluation to check for CAPD (Central Auditory Processing Disorder).  You would need someone trained to check for that and they need to have the facilities to do so.  Even if his hearing is just fine, he may be struggling to turn those sounds into something meaningful.  In other words, hearing could be perfect but neurologically he could have a glitch in processing those sounds in his brain.

 

I am not entirely familiar with all of the reading materials you mentioned but it seems like quite a bit.  How long are his lessons?  He may need something more targeted and broken down that is multi-sensory and very structured, with lots of review.  

 

Is it possible he has dyslexia?  If he has dyslexia, he may do better with something like Barton Reading and Spelling or Wilson or something along those lines.  That, of course, would be an added expense.  Barton resells for close to original cost, usually, so some buy the first level, then just keep practicing while they sell that level and use that money to invest in the next.  Since that level of intensity and type of reading remediation may not be what he needs, I don't know that trying to invest in Barton is the way to go if resources are limited.  I just thought I would mention there are some great reading programs out there specifically for dyslexics that may help.  

 

What you CAN do right now, at no cost whatsoever, is give him the Barton screening.  If he can pass it, then he can hear sounds well enough to probably do several different reading programs.  You might look at something like All About Reading.  It makes too many leaps for some dyslexics but is perfect for kids that just need things more broken down and systematically reviewed in a multi-sensory way.  If he can't pass the Barton screening, then he may need a program like Linda-Mood Bell's LiPS program to help with sound discrimination before he tries ANY reading program.  Make sure you give yourself the Barton tutor screening first.  Easy to do, it is not testing knowledge but sound discrimination, and it is free.  You need to both be rested and able to focus when you do the screenings.  Do it when and where you won't be interrupted and there isn't a lot of background noise.  Great free resource to add to your knowledge.

 

https://bartonreading.com/students/

 

While you are tweaking things out, I would strongly encourage read alouds where you read slowly, emphasize important words, do some targeted vocabulary building that ties to whatever you are reading to him, etc.  A book series would be best since he can become familiar with the characters and setting and those things carry over to the next book and the next.  It requires less brain power since some things will remain the same from book to book.  He can focus more on the plot, etc.

 

:grouphug:  :grouphug:  :grouphug:

[kbutton]

I second a hearing/CAPD evaluation. It often accompanies ASD. I have a kiddo with CAPD and apraxia (not severe apraxia), and he couldn't hear vowel sounds terribly well until he learned to read. He thought thin, then, and than were all the same word until he started reading, and he thought we were having one over on him that there were three different words that close in sound. 

[PeterPan]

Don't know if you lurk to know about my ds, but he's very similar to yours.  He's 7.5, verbal apraxia and ASD, and yes he has SLDs.  My guess is you have dyslexia going on, just run of the mill dyslexia.  I *did* take my ds to a university to get his hearing checked and talk over APD.  He was 6 at the time, so they ran a dab of the SCAN3.  We really don't think that's what is going on with him.  With him it's dyslexia, and what you're describing screams dyslexia.

 

Give him the Barton screening test.  I'm guessing he fails.  When was your last psych eval?  You need to update your psych eval and have them run the CTOPP.  That way you have a baseline and an actual diagnosis of the SLDs.  That's fine to get the hearing screened if you want as well.  Our uni will do audiology eval AND the SCAN3 for $35, which is just the best deal in the world.  That's full booth, done right.  Privately that's $380, ouch.  But if you can get it for $35, sure fine.  

 

Where were we?  So update your psych eval, get the SLDs diagnosed, and then when you have that CTOPP run and have done the Barton pretest I'm *guessing* you're going to need LIPS.  I combined it with PROMPT, and it was really amazing for us.  Oh, I remember.  The other thing is make sure your psych does the CELF5 on him.  The CELF is this super detailed language testing.  My ds had these funky highs and lows.  The highs were because of his gifts and the lows were the other gifts, oops.  But you have to know those lows, because they affect reading comprehension.  My ds became functionally hyperlexic for a while, decoding but not having a clue what he read!  We've been using The Grammar Processing Program, by Super Duper to great effect.  But really, get the baseline testing and THEN start those interventions, kwim?  Otherwise you're fixing things and don't have the papertrail to get you access and accommodations.  So you MUST update those evals if at all possible.  The ps can handle this.  They can run a CTOPP and the CELF, definitely.  Might take cajoling, but they can.  

[Lots of boys]

Thanks everyone. Our last evaluation was done when he was 4. The Neuropsych really only did the ADOS and a few screening questionnaires. My oldest son has also been tested (ADOS and WISC) so I am familiar with those tests but not the CTOPP or CLEF5.

 

Oh, I should mention that my son did have an audiology exam back when he got his Apraxia diagnosis (in a booth) and it all came back fine. I don't think this gets at CAPD though but I'm not sure.

 

Ugh, I just wish it wasn't so much money for evals. I feel like this poor kid has been evaluated since birth!! And yet we still don't feel like we know entirely how to help him.

 

Reading is just soooooo hard for him. If the font is slightly different from what he is use to, he won't be able to read even the shortest of words. I should add that he still struggles to write and it is often with a lot of reversals. I know this is normal up to around his age but it is a real struggle for him.

 

We read a lot to him. Every night we read to him for about an hour and every morning he starts his school day listening to an audio book for about an hour. It has taken a long time coming before he would sit to listen to either of these things. I often felt (at least until the last year or so) that he really struggled to understand what was being read to him if he didn't have pictures that he could reference along the way. He has improved with this a little and now enjoys audio books as long as they are not too complex. He also has to have a quiet room to listen to them in.

 

His speech is much better now but he still struggles to say many sounds or blends which makes his speech sound immature. He also really struggles with the pace of conversations. He can't just jump into a conversation because he can't speak fast enough to contribute in a timely manner (I'm not sure if that makes sense). He struggles in group conversations but does much better one on one with someone.

 

Thanks again for your thoughts, I wish things weren't such a struggle for him. It breaks my heart some days.

[Storygirl]

I agree that more evaluations might be needed to give you better answers. Now that he is school aged, you have different concerns than when he was four. That's natural.

 

First, I would drop the CLE language arts. I've used it with my kids. We really got bogged down in it, because it is hard, and the workbook requires a lot of work every day. I would drop it and just work on reading with him. The focus on the diacritical markings in CLE might also work against whatever you are doing for reading instruction.

 

If you like CLE, you can pick it up again in a few years in third or fourth grade with level 300 and be fine. There isn't a need to do it now.

 

Secondly, you can request evaluations through the public school to get the CTOPP and the CELF for free. Under the Child Find portion of the federal law, they are required to evaluate all students in their district, whether they are enrolled in school or not.

 

Federal law does not require the schools to offer services to homeschoolers, so each state and district has their own rules about that. But they are required to run the screening tests. If you decide to do this, people who have been through it can give you some more detailed advice about the process.

[Storygirl]

I should add that the school is not likely to diagnose dyslexia. Schools don't always use that term. Technically for their paperwork a reading disorder is called Specific Learning Disability (SLD) in reading. That doesn't mean it's NOT dyslexia, though.

 

The CTOPP will show whether there is a problem with phonological processing. That signals dyslexia (even if they don't call it that). Those CTOPP scores are what you are wanting to see.

 

And then the CELF will reveal other possible language based holes in his skills. The two tests together should give you a lot of information.

[PeterPan]

To clarify on Story's thoughts there, it's true the school is likely to say SLD Reading, not dyslexia, even though the federal gov't is TRYING to get schools to say dyslexia.  However that does NOT mean they won't diagnose.  I keep saying this, but your ds is sounding very much like mine, and the school had NO problem getting to SLDs on him.  The comprehension problems you're describing will show up on the CELF, and you need that test run so you can see how severe they are and in what areas.  Then you'll have a baseline to intervene.  

 

You're saying you're reading to him.  You're going to have to STOP thinking like he's just a typical kid.  He's not going to learn to read that way.  An SLP can run the CELF and then it will just be $100 an hour or whatever the SLP charges.  I know you're getting ST.  Odds are you need more.  Is he getting PROMPT?  I'll say what you don't want to hear and say you should be looking at it.  He's not 100% intelligible and his speech is still slow.  That's all the motor planning, and PROMPT is the best thing out there for motor planning.  Now if you're getting PROMPT, then alas that's just reality.  I'm just saying if you aren't getting PROMPT, I would put that on the table.  I'm saying it's so much better than other therapies that I would do WHATEVER it takes to get it.  Like move, sell your house, put your kids in school.  It's THAT good.

 

Back to the CELF.  I'm finding that our PROMPT therapist can't do everything.  I mean, she sees him 2 hours a week.  That's a lot of therapy!  But even then, they CANNOT get to all the language issues.  You have autism.  That's causing the comprehension issues and the CELF will help you target them.  The print issues are the autism too.  The skill isn't generalizing.  Honestly, one thing you could put on the table is putting him into a school for autism.  Or get funding to bring in providers.  

 

I've been around the block a long time, because my oldest is 16.  I hit these things and I KNOW when they're beyond me.  I know when they're taking WAY more than normal and maybe require more energy, more repetition than I even have to give.  And maybe he's your only and you can do that!  I'm just saying, for me, I've decided to expand my team.  That's my encouragement to you: EXPAND YOUR TEAM.  Bring in more people to help.  If you can't afford a full psych eval, go through the ps.  Does your state have disability funding?  Does your insurance kick in?  These generalization issues for his academics are covered with ABA.  Your insurance should cover ABA.  So look at your funding situation.  Look what you can do to EXPAND YOUR TEAM and bring in more help, more eyes, more energy, more perspective.  He's going to need more work, not less, more exposures.  It's not going to be some magical oh I waited and it clicked.  

 

And yes, you're reading it correctly that he's probably not really understanding the read alouds.  My ds only understands audio like that if he listens over and over and memorizes it.  The CELF testing can help you dig in on that.  We're using books this year from Super Duper for it, and they've been a BIG help.  

 

Without the testing, you have no paper trail, no access to services, no accommodations.  I don't see how you get around getting evals.  You have an ASD diagnosis, so your state children's health insurance should cover it.  3-4 years is a normal gap.  You're having language problems due to autism and suspect SLDs.  They should do this for you, either through the ps or insurance.

Edited March 21, 2016 by OhElizabeth

[PeterPan]

Did you do the Barton pretest yet?  It's free and will give you helpful information.  Do that and report back with the results if you want.  :)

[kbutton]

You can have both CAPD and dyslexia. I would see what the language testing reveals, and then consider CAPD testing. It sounds like you're going to find some receptive language quirks too, but I don't know that for sure. Those language quirks could be related to CAPD or to autism or to both.

[kbutton]

You can have both CAPD and dyslexia. I would see what the language testing reveals, and then consider CAPD testing. It sounds like you're going to find some receptive language quirks too, but I don't know that for sure. Those language quirks could be related to CAPD or to autism or to both.

 

Oh, I see OhElizabeth already addressed autism and language. 

Edited March 21, 2016 by kbutton

[PeterPan]

For the op, he was too young before to be screened for APD, yes?  So anybody can run the SCAN3.  Sometimes a psych will run it or an SLP.  An audiologist can do it.  There's another common tool for it (TAPS), but I don't like that tool because half of what it flags is low with dyslexia anyway.  My ds flagged on that but with the audiologist had no flags.  So hold out for the SCAN3 from somebody if you're getting it done.  Our uni can do that for $35, which makes it doable for a lot of people.

Edited March 21, 2016 by OhElizabeth

[Crimson Wife]

OP, are you in Canada? Or the U.S.? I see a reference to Canadian mapwork but I'm not sure whether that means you live north of the border or just are studying the country right now.

 

If you are in the U.S., see if you can get your DS on the Medicaid waiver. That will pick up co-pays and deductibles for things like SLP testing & therapy. The SLP can't do a full CAPD eval (you'd need an audiologist for that) but it is within the scope of practice to do certain CAPD screening tests. Also a SLP can run a CTOPP and a CELF.

 

Universities sometimes offer lower-cost LD testing but it really varies.

[Lots of boys]

We are in Canada so navigating the medical system is a little different but I do very much appreciate your advice. I have contacted our local university to see if they offer any testing before I contact a private Neuropsych. I spoke to my husband abut it last night and he was surprisingly supportive about getting him further testing. I had assumed he wouldn't want to spend the money but he agrees it is time to dig deeper to get him some more help. We will just find the money somewhere 😕

 

I haven't done the Barton screening test with him yet but will do so this week with him.

 

I also found an audiologist that specializes in APD but they said they really prefer we get a full eval done first to rule out other things before he does APD testing.

 

Now I'm off to look for an SLP that uses PROMPT. My son has had many years of speech therapy but I was never convinced it really helped him to the extent I thought it would. It seemed to me that each SLP we have seen has a 'one program fits all' kind of approach to treatment.

 

Thanks again everyone.

[PeterPan]

Those sound like good plans!  If the uni does it, just make SURE they're running the CELF and a CTOPP.  You really need those breakdowns on how he's processing language.

 

The PROMPT Institute has a provider map, so definitely look there.  I hope you can find someone!  Yes, it's very common that people get years of traditional therapy and still don't get the progress they would like.  He's still young enough that I think they could get in there and work on that motor planning it get it to bump, no problem.  If he were 12, it would be really slow progress.  But at 7?  I think you'll get good results, noticeable results.  If you find someone and they're too far away, you can go in for a week or two of intensive.  I've done intensive that way because we live 2+ hours from the therapist.  When we started years ago, my options were almost nill locally.  Now our lead therapist is an instructor, so she has been doing workshops around the state, giving an explosion in options!  One autism school locally trained all 8 of their SLPs in PROMPT!  But even with all this, there aren't enough providers.  That school has long waiting lists and can't even get to people.  

 

So that's another way to do it, with a week or two weeks stay for intensive therapy.  It's pricy, but it can be shockingly effective.  Part of the PROMPT process is going to involve teaching *you* to carry over the prompts at home, so it's really IDEAL for homeschoolers.  I can do all but the most complicated prompts, and it makes it easy for me to bring that physical sensory input into our reading and language time.  I was able to connect PROMPT, Barton, LIPS into one physical process so that he could FEEL the sounds, see the sounds, hear the sounds.  It was AWESOME, highly recommend.

 

I hope you can get access to evals where you are.  It seems like it varies.  Definitely keep us posted.  If the waiting list is going to be long for full evals, then try for an SLP or someone to do just the CTOPP and CELF while you wait.  Just see what you can get. I'm glad your husband is onboard with the evals.  That always helps!  And he's right.  You're going to be able to teach better when you have updated information.  It's very important to have evals to help you target your efforts.  Now if it's a question that evals will make you not able to afford PROMPT, that's rough.  Obviously therapy is important too.  But see what you can do.

 

Keep us posted!   :)

Edited March 22, 2016 by OhElizabeth

[Tiramisu]

Just wanting to send hugs to the OP.

 

I hope you can find the money can get this done. I think it will be worth it to get this load off your mind. Dealing with this stuff is hard but not knowing what you're dealing with and how to help is the worse.

 

:grouphug: :grouphug: :grouphug:

[ElizabethB]

My apraxia student needed a ton of repetition and explicit teaching of sounds and sound ketter correspondences, for example he could say ts in cats when speaking but had problems decoding it, I found that ts was coarticulated, and showed him the single letter for ts in my Russian book. I would use the Phonovisual Charts, allow him to use them while reading and go through the sounds daily. He did CLE at half speed, it was a good program for him but went too fast. You are going to have to work to integrate speech therapist level understandng of sounds with his reading and tie it all together. He also did well with my vowel charts, but they took a lot of repetition and review. I started with the colored charts and weaned him down to black and white. The color was a good additional hint until he could memorize the sound spelling corresoondences on his own without a hint.

[ElizabethB]

Phonovisual Link, the charts are on page 10 and 30. You can buy nicer versions online, but print and use these for now. You could make extras and cut out the letters and use them to spell and sound out words you are learning.

 

https://archive.org/details/phonovisualmetho00scho

 

Here. is my vowel chart.

 

http://www.thephonicspage.org/On%20Reading/Resources/PL26VowelChart.pdf

 

I would watch through my online spelling lessons and also get and watch the Teaching Company's Understanding Linguistics.

Edited March 22, 2016 by ElizabethB

[ElizabethB]

I also like the app sounds of speech, or online, you have to hunt around, they have moved it.

 

http://soundsofspeech.uiowa.edu

[ElizabethB]

The Phonovisual charts are in speech order, very helpful...v,f leaf, leaves, of as ov. s/z, his as hiz, etc. You and he are going to have to understand and learn this level of sound spelling interaction. The also are arranged in order of how they are made down the page, and paired consonants across the page.