Really confused

mommyof4boys · October 2012

I'm trying to muddle through all the new info coming at me for Jon and Matthew. We were told Jon has dyslexia last week and it was suggested to do an education eval to have it formally in writing that he has this; it would also help for reading, etc. When I was talking to the teachers at school today, the LDTC said they can do the formal testing there. The social worker said they can't dx dyslexia. I didn't think they could. I thought they would label "reading difficulties" but not specifically the exact learning disability.

Matthew has, what I would assume is dysgraphia. He has exactly what he wants to say but struggles with the mechanics of the writing of the letters, etc. His M might be where it needs to be, his a might be up onthe top of the lines, and his t's might be inverted as if they are X's or on their side, for example. He is switching from right to left when he writes, and either puts too much pressure or not enough for when he is writing his letters.

I know there is a school around here that does testing for free every once in a while but the developmental pediatrician that we took Jon to said they do the ed testing for a co-pay visit. We are thinking of this for both boys.

In addition, we got paperwork today from the developmental pediatrician for Matthew saying they think he has ADHDi; I am concerned that might give the district the ammunition they need to refute what I am saying with Matthew's motor skills. He does fall down and trip a lot due to not paying attention HOWEVER he does have a motor planning issue as well which is documented by a neurologist, the developmental pediatrician, physiatrist, past teachers, and his previous ed testing. The district thinks that he doesn't need school based PT.

ABColeslaw · October 2012

FWIW, I am a Language Based Learning Disability Specialist, or Clinical Reading Specialist. Dyslexia is actually my specialty.

Dyslexia can only be DX'd by a Neurologist or Language Specialist. I disagree to a certain extent with the PP who said that if a child is developmentally old enough to read and has had a formal reading program, but still unable to read, they would be considered Dyslexic. From a Neurological stand point, Dyslexia is more an impairment of communication between your eyes and your brain, thus the "Lexia" referring to your eyes. That of course leads to a break down of fluency and consequently reading comprehension. From an educational standpoint, we often specify the specific disability in terms of the system impaired. I.E "John has a specific learning disability in the area of Language Decoding (reading phonetically) and Encoding (Spelling) (read Dyslexia) Vs. "John has a specific learning disability in the areas of phonological processing or reading comprehension" If it is unclear you will get "John has a specific learning disability in the areas of reading and writing"

There are plenty of recent articles that lump more classic visually dyslexic student with what is now being coined "globally dyslexic" (which would include a whole spectrum of reading impairment) but the latter term has yet to be recognized by the National Reading Panel.

In the end it only matters because you want to understand what system is impaired in order to put effective remediations in place for your son. If your child has been DX'd Dyslexic by your Neurologist, then he or she probably gave you a list of intensive remediation programs that they recommend. You would be looking at programs like "Wilson Language Systems, Visualizing and Verbalizing, Linda Mood Bell LIPS, Seeing STARS, Orton Gillingham (Like Wilson), SpellOgraphy, or RAVE-O.

In order for any of these programs to be effective, you're looking at a minimum of twice a week 60 minutes sessions....minimum. I recommend three times per week, but many schools will fight that. The educator in charge of your son's remediation should be certified in the specific program and have paperwork to show for their training.

I didn't catch how old your son is, but its important to note that you have a narrowish window, somewhere between 4th and 5th grade to make the most of your child's developmental ability to remediate quickly. Studies show that children who do not catch up by 4th grade, remain a grade level or more below for the rest of their school years.

Good Luck, if you have more specific questions you can private message me and I would be happy to help you out.

mommyof4boys · October 2012

-auntie-:
mommyof4boys:

I.

Gnerally speaking, if a child has been in a formal reading program and is developmentally old enough to read and he's not reading- he is considered dyslexic. A school district can do a cursory eval for LD issues and label him, but they probably won't do the indepth testing that will identify exactly why he isn't reading. For a kid on spectrum, crossing the midline, tracking, processing sound and phonemic awareness/discrimination could all be in play.

We had DS's educational eval done at Lewis School in Princeton. It was very expensive, but our insurance picked up most of it since they have a neurologist consult with the evaluation team.

https://www.lewisschool.org/clinic.html

The developmental pediatrician has someone from a local school that does the testinig. I know the New Grange school does them for free in the spring. I just want to know what is going on, KWIM?

I would venture that dysgraphia is as common among kids on spectrum as sensory issues are. There are all kinds of reasons for this- hypotonia in the hands and trunk can make production of written work difficult to painful. The hand switching could be fatigue from tone issues or it could be a function of not being able to cross the midline. If he's copying off a board or paper, it could be a result of tracking needed to do near or far point copying. And it could be that writing isn't something he finds rewarding enough to really work at.

I believe it is because of his hypotonia. He enjoys writing; he wants to and tries to write often.

CHOP does educational testing as well.
Hunterdon Medical Center is providing the testing center.

I don't see where ADHD would preclude PT. What sort of plan do you have to treat the symptoms of ADHD? Early on, I wasn't totally bought in to ADHD and DS. But overtime, I did start to appreciate where a behavior plan and the judicious use of medication allowed him to successfully access the therpies we had in place for him. I would urge you to keep an open mind if your behavior mods alone don't help him focus.

We just got the info for the ADHD. I need to call and find out why they didn't verbally tell us. George and I talked about it today. Matthew and I ended up crying last night in the shower. He said he doesn't know how to stay in control. He wants to and tries. Today he ran out on a street after I was trying to find out why he had a huge bruise on his face. A friend unlocked the bathroom door in the school bathroom and kicked the door open *Jon had to tell me*. He didn't want to tell because he didn't want the kid to get in trouble.

He probably won't meet the criteria for an educational need for PT. The bar is pretty low on this one. If he can walk into the room under his own steam it's unlikely he'd get PT. I'm sure he would benefit, but that's not the same. I don't know of a single mainstreamed kid on spectrum in my district getting PT though a little is pushed into the self contained autism classrooms. OT and graphomotor skills support are largely faded for most kids on the higher end of the spectrum by the end of 3rd.

In a situation like yours, prioritizing is critical. You need to decide what is non-negotiable. Often services are pulled out; even pushed in he would have an adult between him and his class. If your son is pulled out for speech, specialized reading struction, OT, PT and behavioral therapy (for ADHD) he would be a guest in the classroom. Sometimes this is unavoidable, but it isn't the same as being truly included in the mainstream.

Is there any way you can force the school's hand to pay for 3 years at a school like Lewis? I know a lot of schools in NJ do pay tuition for their kids.
He is only getting 1 20 minute session of social skills and it's being done through a "lunch bunch". This is why I am confused; Matthew is on grade level for reading and math. His reading issues are more comprehension. where it comes to reading between the lines...I really am considering pushing him to be full on mainstreamed with supports. He gets pulled out for 2 speech sessions and 1 ot session every 6 days and the 20 minute lunch bunch.

mommyof4boys · October 2012

ABColeslaw:
FWIW, I am a Language Based Learning Disability Specialist, or Clinical Reading Specialist. Dyslexia is actually my specialty.
Dyslexia can only be DX'd by a Neurologist or Language Specialist. I disagree to a certain extent with the PP who said that if a child is developmentally old enough to read and has had a formal reading program, but still unable to read, they would be considered Dyslexic. From a Neurological stand point, Dyslexia is more an impairment of communication between your eyes and your brain, thus the "Lexia" referring to your eyes. That of course leads to a break down of fluency and consequently reading comprehension. From an educational standpoint, we often specify the specific disability in terms of the system impaired. I.E "John has a specific learning disability in the area of Language Decoding (reading phonetically) and Encoding (Spelling) (read Dyslexia) Vs. "John has a specific learning disability in the areas of phonological processing or reading comprehension" If it is unclear you will get "John has a specific learning disability in the areas of reading and writing"
There are plenty of recent articles that lump more classic visually dyslexic student with what is now being coined "globally dyslexic" (which would include a whole spectrum of reading impairment) but the latter term has yet to be recognized by the National Reading Panel.
In the end it only matters because you want to understand what system is impaired in order to put effective remediations in place for your son. If your child has been DX'd Dyslexic by your Neurologist, then he or she probably gave you a list of intensive remediation programs that they recommend. You would be looking at programs like "Wilson Language Systems, Visualizing and Verbalizing, Linda Mood Bell LIPS, Seeing STARS, Orton Gillingham (Like Wilson), SpellOgraphy, or RAVE-O.
In order for any of these programs to be effective, you're looking at a minimum of twice a week 60 minutes sessions....minimum. I recommend three times per week, but many schools will fight that. The educator in charge of your son's remediation should be certified in the specific program and have paperwork to show for their training.
I didn't catch how old your son is, but its important to note that you have a narrowish window, somewhere between 4th and 5th grade to make the most of your child's developmental ability to remediate quickly. Studies show that children who do not catch up by 4th grade, remain a grade level or more below for the rest of their school years.
Good Luck, if you have more specific questions you can private message me and I would be happy to help you out.

I am also a reading specialist. I do more with phonemic awareness, though. I looked through as much as I could to find but am not able to research though the NRP data base as I am not a student any more. I graduated in 2010 and am not working in a school.

My twins are in 1st grade; they are 7. Matthew is higher language wise and reading level wise. We had a meeting on Wednesday to discuss me wanting more of an intensive program for Jonathan. They are doing Fundations, guided reading, and Rapid Recognition sheets as their reading program. I asked for more of a Wilson approach rather than Fundations; I also asked that they work on comprehension as Wilson, IMO, isn't a complete package program. I see it focusing on fluency and forgetting about phonemic awareness, vocabulary, and comprehension. IMO, by design it works with phonics and fluency. I am also Wilson trained *not certified*. I was also trained in 2000 in Orton Gillingham. I have discussed Lindamood Bell with a few of their "people" through what I do with my advocating. I believe that would be a great fit for Jon moreso than Matthew. Unfortunately, we would have to drive an hour there to have his service done AND I'd be hard pressed for the district to pay for it. The boys' reading teacher said she will happily do more Wilson-like reading with them but will not begin the formal Wilson program until 2nd grade. Here they will not do any intervention with reading until 2nd grade. IMO, you start the intervention as soon as you know there is something that is dysfunctional with their reading progress. That is what I was taught as well.

As far as the Rapid Recognition Sheets, I am concerned that the combination of apraxia and dyslexia make for a not great combination. I thought Tim Rasinski's thought was to time. Jon also has a goal to slow down his rate of speech. This was a concern; they have a goal where all 1st graders will read at a rate of 60 words per minute *which stems from their fluency goal in the district*. We can't tell Jon to read faster but slow down his speech if we tell him to read as we speak to help model the rate of reading. They said they'd not time him.

ABColeslaw · October 2012

I agree that Wilson is not a complete program. One of the reasons I love RAVE-O is that is works on decoding, encoding, fluency, orthography, and comprehension. Have you heard of it? I was trained in RAVE-O 6 years ago and never ended up using it until last year. I attended a refresher course and was impressed by some of the research they had on using it with student who had impaired phonemic awareness, phonological processing, and speech impairment. I really hate using timed fluency sheets with even mildly Apraxic students, but you're right the combination of Apraxia and Dyslexia combined would make that sort of practice completely inappropriate and I would say very stressful for the student. And typically when I do remediation with students that have speech impairment, I co-remediate with an SLP.

Where do you live again? I know it is very different from state to state, but here in Mass, the school would be hard pressed to say no to Wilson if a child had a formal Dyslexia Diagnosis. I love when schools say "But we use Fundations" Awesome regular education whole classroom instruction, not remediation though.

Is there something specific you are looking for in the archived journals? I might be able to find it for you and print it off. I'd have to scan it back in, but worth a shot.

ABColeslaw · October 2012

Oh and I meant to add, it is upsetting that they wait until second grade to formally remediate when there is a known reading disability or dysfunction. I think that is crazy and a waste of important developmental time. I would be really upset if I was told that by my school district. Do you have any teacher friends who can come to meetings with you and act as an advocate? Sometimes is just takes having someone else there with you.

mommyof4boys · October 2012

ABColeslaw:
I agree that Wilson is not a complete program. One of the reasons I love RAVE-O is that is works on decoding, encoding, fluency, orthography, and comprehension. Have you heard of it? I was trained in RAVE-O 6 years ago and never ended up using it until last year. I attended a refresher course and was impressed by some of the research they had on using it with student who had impaired phonemic awareness, phonological processing, and speech impairment. I really hate using timed fluency sheets with even mildly Apraxic students, but you're right the combination of Apraxia and Dyslexia combined would make that sort of practice completely inappropriate and I would say very stressful for the student. And typically when I do remediation with students that have speech impairment, I co-remediate with an SLP.
Where do you live again? I know it is very different from state to state, but here in Mass, the school would be hard pressed to say no to Wilson if a child had a formal Dyslexia Diagnosis. I love when schools say "But we use Fundations" Awesome regular education whole classroom instruction, not remediation though.
Is there something specific you are looking for in the archived journals? I might be able to find it for you and print it off. I'd have to scan it back in, but worth a shot.

I've never heard of RAVE-O before. We have a "new to us" case manager for right now. The case manager for both boys is out on maternity leave. I have to say this person is on the ball. She is a case manager for the district and is just taking over the load until January. She had pulled the SLP in the meeting so she could offer suggestions. The guided reading teacher has Jon on a different level than I do. I had him on a end A/beginning B. She had him on a end C/beginning D. If he is doing more for them, wonderful! For me, it's eye rolls, attitude, and fighting. I see him on a frustration at a C which is part of my concern. He has a phonological disorder as part of his language issues and by rights phonological awareness issues.

We're in NJ. I love Mass! I am trying to convince my husband to move there...I love the Boston area. My youngest son has specialists there that we see. We've been there for the past 3 summers going to Children's Hospital.

The district is using Fundations in all the special ed classes for reading. They use it from K to 6th. We argued last year that it shouldn't be used beyond 2nd grade. We do have the dyslexia dx based on the developmental pediatrician. She saw what I had brought, what I had done assessment wise and did some herself. He was below level for reading/math. The math assessment she did was addition/subtraction. He hasn't been formally exposed to the way it was on the page. I am not concerned about that. What they are doing now in math is money not addition, etc.

What I am looking for is formal reading programs for dyslexia/apraxic children. BTW, I am learning how to be a professional advocate right now. I am taking classes from our SPAN and will be bringing that knowledge to my IEP meetings. I am armed with my state code, federal code, case law, etc.

ABColeslaw · October 2012

I can't believe they are using Fundations beyond second grade. That drives me batty. It is not a remediation program, nor was it ever intended to be. Barbara Wilson was my academic advisor in grad school, and I know she'd be unhappy if she heard the program was being used in that manner. I should email her and ask her what she thinks.

I'm unsure of an all in one program for Apraxia and Dyslexia. That is a tough combo. What level are you at with Apraxia therapy? Are you still working on CVC? Has anyone tried the LIPS program? Typical what I do with my language impaired kiddos is three sessions or a LIPS/WILSON Hybrid and two sessions of combined phonemic awareness and artic therapy with an SLP. I've seen a lot more progress this way than just sticking to a boxed program. None of the programs hit everything that needs to be hit.

Do you have the Linguisystems guide?

ABColeslaw · October 2012

Move to Mass! You never know, you could end up in my town...right outside the city. We would take care of your boys

mommyof4boys · October 2012

ABColeslaw:
I can't believe they are using Fundations beyond second grade. That drives me batty. It is not a remediation program, nor was it ever intended to be. Barbara Wilson was my academic advisor in grad school, and I know she'd be unhappy if she heard the program was being used in that manner. I should email her and ask her what she thinks.
I'm unsure of an all in one program for Apraxia and Dyslexia. That is a tough combo. What level are you at with Apraxia therapy? Are you still working on CVC? Has anyone tried the LIPS program? Typical what I do with my language impaired kiddos is three sessions or a LIPS/WILSON Hybrid and two sessions of combined phonemic awareness and artic therapy with an SLP. I've seen a lot more progress this way than just sticking to a boxed program. None of the programs hit everything that needs to be hit.
Do you have the Linguisystems guide?

If you e-mail her, you'll be my new girl crush You have no clue how hard it has been "fighting the good fight" and not to be taken seriously! Right now, we had to fight to get Jon to receive more therapy for his apraxia. The SLP's goals are on the money but from what I know she's not using a specific program persay but bits and pieces from several. She has made a difference with his articulation. That is where the apraxia dx comes in. He has oral motor issues when it comes to the production of the words AND a phonological disorder.

I don't have a Linguisystems guide. Honestly, I'm 34 and just now figuring out what I want to do with my degrees. If only we could figure out how to fund it...I want to go back to school AGAIN and get a law degree. I know I wouldn't be rolling in the dough being an educational attorney but I feel it is my calling.

I am in love with a few areas outside of Boston. DH's cousin lives a bit north and has an accent now. He calls the one place Pea-boody....we stayed in a Comfort Inn *if I remember* and the customer service is wonderful. They suggested a seafood place that we love there; the people support the one ARC in the area and were very kind when we said why we were in the area. I also love Salem. My boys adore the pirate museum

ABColeslaw · October 2012

Lol, well I'm actually from Beverly which is the town smack dab in the middle of Salem and Peabody. Its a good place to raise a kid. From an educational stand point, I'd say go with Peabody....Salem isn't bad but has more underpriviledged areas and a lot of the SPED funding goes into alternative highschools.

I think it would be fantastic if you got a law degree. I did ed advocacy for a while, and I loved the lawyers. You walk into a room and watch the school system roll over!

I work in Bedford, which is a stop tier district....not a bad place to live either

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