Teacher didn't know he has an IEP!

At the end of kindergarten last year Tom moved from a 504 plan to an IEP. In it he continues to receive PT & OT twice a week and more classroom accomodations and understanding of his issues were added.

We had our parent-teacher conference yesterday with his 1st grade teacher. She is amazing and we are so thrilled to have her again (she was Harry's first grade teacher, too). She just loves Tom and makes some nice accomodations for him, often in association with the OT. As we talked I mentioned something about his IEP. She didn't know he had one! She didn't have any paperwork on the IEP or copies of any of the testing that was done last year.

Honestly, she is so great that she has already been doing a lot for him to be successful and at first in the meeting I didn't make a big deal about it. But as the day went on I began to realize what a big frickin' deal this is. Because he's been getting the PT & OT since school started, I automatically assumed the IEP was in place. (won't make that mistake again)

She also gave us a note from the gym teacher. She said he is starting a new thing where if he has a child in danger of getting a 'check minus' on their report card then he gives a performance update as a kind of warning.

"In PE class, students are graded on their performance based on our daily participation contract. All students receive a check at the end of class, unless they fail to follow the class rules and expectations. Students who fail to follow class rules or expectations receive one or more numbers to identify the poor performance. The numbers are as follows:

1. not listening, paying attention, or respectful to others or teacher
2. not understanding the task, attempting the task correctly, or following directions
3. blah 4. blah 5. blah

This term, your child has received several 1s and 2s. Please speak to your child about this as it is my goal for all students to succeed in PE. I send this notice to make you aware of your child's performance in PE and to encourage his improvement over the next term. Feel free to contact me blah blah blah..."

Seriously!?! My son struggles to walk down stairs one foot at a time and he's going to 'fail' gym?!
1 - he has documented attention problems
2 - he has extremely poor motor planning ability and can't do most gym activities easily

The classroom teacher said he probably doesn't know about the IEP. If I find out that he made my son feel badly or singled out in any way because of his motor problems I am going to go postal. As if my son doesn't already know he's different that way.

I sent a strongly worded email this afternoon to the IEP coordinator we dealt with last year and copied the teacher, gym teacher, OT, PT and asst. principal/school counselor. (I made sure to praise the teacher) I'm curious what their response will be.

Neurologist report

I received the follow up letter from the neurologist regarding Tom's appt last week.

[snip]
I had the pleasure of seeing Tom in the office at Children's Hospital Boston for a follow-up neurologic visit on Nov 8th.  As you recollect, he is a young man with some mild developmental difficulties, which include problems with motor coordination probably best fitting under the rubric of a mixed dyspraxic disorder and an adventitiously discovered small syrinx in the spinal cord T7-10 roughly 2.6mm.  He has a slightly thickened filum without other evidence of tethering.

Over the interval since I saw him last, the family has become engaged in "active healing" an alternative method of therapy which is involved in "ontogenetic development".  He is engaged in rather intensive therapy along these lines and it appears that he is better as a result of this.

On examination today while he still did not pass the Berges-Lezine Battery of Manual Praxis he did better than the last visit and also did better on the oral diadochokinesis rates of the Mayo Clinic Battery.  His gaits are reasonably well organized, but he still has mild dystonic posturing bilaterally.  The elemental neurological examination shows no change.

At this point in time, I would make no further interventions.  I will see him again in six months, sooner should other concerns arise.  [/snip]

So I'd say that's pretty good since he's seeing some positive changes and we've been doing NR for less than 2 months  :)

DS2 Therapy 11/14/10

Here's Tom doing his crawling and SIR.  You can see that his feet still point up when crawling on his belly, but he's come a long way from where he first started.  At first he wanted no part of doing the SIR (as opposed to Harry who was all over it at Sarge's office), but Tom is being quite adventurous by doing this much and he likes it (despite his squawking).

DS1 Therapy 11/14/10

Here's Harry doing his crawling on his belly and SIR (I guess suspended inverted rotation sounds better than 'upside-down hanging spinning swinging thing')  He has started crawling with only one leg and insists his way is fine when I ask him to use both.  He doesn't want to hear it from me so I'll let Sarge deal with that one.

Some good, some bad

The NR program is going well, we're getting in a good therapy session most days and the boys aren't fighting it.  Sometimes they whine about doing all the crawling and want to not do all 12 laps, but we get through it.  We finally got the winch and chains set up to do SUSPENDED INVERTED ROTATION per Sarge's instructions.  It sounds so crazy, but the boys love it.  We have heavy-duty straps that wrap around their feet and ankles, we hook the straps to a chain and then hoist them up so they're hanging upside-down.  From there we can push them so they swing and spin and they can also touch the floor with their hands (depending on how high they are) and push and spin themselves.  I'll have to take and post a video so you can see - it's pretty cool.

DS1:
He has been very unhappy and frustrated with school and it's getting worse.  He hates that he has to go to school which wastes his time, he already knows everything and how can they add homework on top of everything else.  He would like to beat up whoever invented school and if he were in Congress, he would outlaw school.  sigh...

I recently asked his school for a reduced handwriting accomodation for his 504 plan and we were working towards getting the plan worked out via email.  The school psychologist then contacted me to say she was seeing some of the sadness and frustration I had previously told her about and she is concerned and suggested we have a 504 review meeting.  So we met last week with the teacher, gifted teacher, OT, mom, dad, DS1's psychologist and the 504 coordinator.  It was great to have all these people together and wanting to help Harry, but it was also sad to hear how he is so bright, but struggling.  It's not the academics, it's his frustration, anxiety, difficulty trying something new and lack of close friendships.  He gets along fine with his classmates, but often chooses to read a book or do his own thing instead of really engaging with the other kids.  The outcome of the meeting is that he can type anything longer than 2 paragraphs, but, more importantly, they will have a better understanding of how and why some things are hard for him thanks to the wonderful input from our psychologist.  He's just awesome and really 'gets' my son.  He's an older man with lots of experience with kids like him and working with schools. 

We explained the NR program we're doing and our hopes that it will begin to help Harry with these problems in time.  We are going to have him start seeing the psychologist more regularly since he seems to need that kind of support right now.

DS2:
He's doing well with his program and ok in school.  He's learning to read which is great.  He does show some dyslexic tendencies - like saying "Cam" when reading "Mac" and flipping his letters and numbers at times - but I'm not going to worry about that right now.

Tom had a follow-up appointment with the neurologist last week which went well.  We saw him over the summer for the first time as we were transferring to him from a previous neurologist we were unhappy with.  At that appt looked over Tom's case so far, did a quick evaluation and suggested we take a "wait and see approach" and meet again a few months into the school year.

The appointment was quick - we gave him information about NR and Active Healing and he checked out Tom.  He said NR was not well-known and not validated by research and double-blind controlled studies, but that it certainly can't hurt to try.  (I'm not sure how you could do a controlled study for NR since it's so subjective for each person)  He said he saw some nice improvements which was great to hear.  He did this test of motor planning where the Dr would put his own hands into a certain position and then ask Tom to copy it.  He did different ones getting progressively harder and my son did much better than before.  He didn't have anything to offer us regarding therapy or suggestions and wants to see him again in 6 months.  This will be another great way to see if the NR program is working.

Dietary Supplements

The boys' current supplements - some they've been taking for a long time, some are new.

multivitamin - chewable for DS1, gummy for DS2
fish oil - capsule for DS1, new liquid for DS2
digestive enzymes - new chewable for both (one with each meal)
probiotic - new powder for both (once a day)
melatonin - tablet for DS1 most nights at his request (really helps him fall asleep)

DS2 can't swallow pills yet, so I have to find chewable and gummy things for him.  He was taking a gummy fish oil, but it wasn't that great of a product.  This new liquid one is excellent - it's berry flavored and he got used to taking it after the first few times.

Sarge mentioned possibly doing targeted amino acid therapy with the boys in a few months once their digestion is improved.  He recommends continuing to cut out dairy while adding in digestive enzymes and probiotics.  The amino acid therapy looks interesting, I need to read up more on that.  The enzymes and probiotics are an easy addition and I'm curious if we will see any difference.

If you want to learn more about melatonin (good stuff!) you can read more about it on the melatonin wikipedia page.

Sarge's article: Neurological Reorganization for Brain Injury

Neurological Reorganization for Brain Injury by Sargent L. Goodchild, Jr.

What is Neurological Reorganization?

The more I read about NR, the more fascinated (and hopeful) I become.  It seems to me that many kids can benefit from this type of work and I'd like to help more people learn about it.  I can't personally vouch for it yet since we're just beginning our program, but it makes so much sense.

Here is one description from the Neurodevelopmental Solutions website:


Neurological reorganization addresses a spectrum of emotional, behavioral, academic, and physical challenges that arise as a result of disrupted early childhood development. There is a specific developmental sequence babies complete in utero and during the first year of life that triggers healthy brain function. If a child is not given the opportunity to complete the developmental sequence or experiences a traumatic event, functional deficits occur that can affect the rest of their lives.

Neurological reorganization is a process that replicates the normal movement, reflex and sensory experiences that occur during a child’s first year to stimulate the brain’s ability to repair it’s self without the use of medications.

No sit-ups

Sarge said he doesn't want the boys doing sit-ups or crunches in gym class or karate.  I don't think the gym teacher believed DS1 and asked for a note.  This is Sarge's letter:

DS1 has recently begun care at Active Healing, Inc. to address factors believed to be at the root of his challenges with focus and attention. During a thorough evaluation of his developmental profile it was determined he has yet to establish a sophisticated patterns in regard to either his tummy crawling or his hands and knees creeping. Furthermore, it was also determined he has not inhibited several primitive reflexes of which one is the Moro.

The ability to crawl is a functional skill derived from the pons level of the brain. The pons, among other responsibilities, signals production of the neurotransmitter serotonin. Serotonin is known as the “happy” neurotransmitter and helps calm us and relieve anxiety. A lack of sophistication at the level of the pons as demonstrated by DS1 usually coincides with a higher level of anxiety.

The Moro reflex is a startle reflex that should be inhibited by 5 months of age. When it persists in a child as old as DS1 it raises their level of anxiety by lowering their startle threshold. These children typically like a set routine, become controlling and have difficulty with transitions.

Having identified these factors within DS1 and discussed them with his parents it has been decided to work on these aspects of his developmental profile. Of course, it is everyone’s hope that by giving him mastery in these and other areas he will progress into the future unencumbered by these factors.

It is important during this process to make certain accommodations and adjustments to our expectations of DS1. At this point in time and until further notice he should be excused from doing anything that approximates a Moro response. This includes crunches and sit-ups.

Please contact me if you have any questions or need further details about DS1's case.

Seems strange that such a simple movement could be so powerful.  Yet another interesting element of the program for me to ponder...

2 Weeks In...

So we're just over two weeks into the program and so far, so good.  We've been good about getting at least one session each day, even though the program calls for 2 (and even 3 of a few things).  It's just hard to fit it all in - nothing can get done before school (I can barely get them together and onto the bus by 7:35am) and doing some after school means we're doing another session just a couple of hours later.  Anyway, we're doing pretty darn good.

We also cut milk out of their diets.  It almost caused a full scale revolt since DS1 drinks at least a gallon of chocolate milk a week and DS2 drinks the same amount of white milk.  We have substituted Gatorade for now (I'm not a huge fan of it, but my MIL buys it for them and they like it).  Baby steps.  It's been almost 2 weeks off milk (I haven't tackled the rest of dairy like cheese and yogurt yet) and suddenly in the last few days DS1's appetite has totally picked up.  It is so exciting because he is such a picky eater and has been eating less and less food and is getting scrawny.  He's one of the littlest kids in his grade.  He eats no fruits or vegetables, much to my dismay and I have a lot of trouble just finding half-decent things he'll eat.

I also dropped his concerta dose from 27mg back to 18mg which may have helped his appetite, too.  I don't really notice any decline in the effect of the concerta so we'll stay at 18 and see how it goes.  Ultimately, it would be so amazing to be able to discontinue any adhd meds as we progress through the program.

I have some video clips I put together and plan to continue taking videos of their progress as we go along.

This is during the initial evaluation appointment before starting the program.  DS2 had a very strong response to the spinal galant test where you can see he kept his head down and started crying.  Sarge said he's never had a kid react like that.  You can also see their crawling and creeping patterns and a little skipping and hopping.  evaluation highlights

This is DS1 about 10 days into the program.  This is DS2 about 10 days into the program.

Today, Saturday 10/16, DS2 had such an amazing therapy session I actually had tears in my eyes.  He had beautiful form on his patterns, didn't whine and get distracted and just did a fantastic job.  I was so proud of him and really played it up with him giving him huge hugs and hi 5's and made a big deal about it.  He was really tickled and hopefully will keep up the good work.  Both boys were actually very well behaved today and I praised them a lot for it.

Sarge is also a big proponent of chiropractic care and the boys and I have been seeing the chiropractor that originally told me about him for about a month now.  I like her a lot, she thoroughly evaluated the boys and sees the boys weekly (twice a week for the first few weeks).  They seem to like going to her, but I always feel stressed when we go because the boys are all over the place there.  They're pulling delicate things off the shelves to play with, fighting with each other, messing around with the adjustments on the tables, asking for animal crackers or just generally being pains in the asses.  Sometimes I feel like taking them places is like trying to herd cats.  Today at the chiropractors, they were very well behaved and easy going.

Is today's success the beginning of progress from the new program (exercises, no dairy, extra vitamins, chiropractic care) or just a good day?  We'll see, but it's still good  :)

Getting started

Once we decided to go ahead with the program, the next steps were to go up for a full evaluation that took all afternoon and go up the following week for an afternoon of Sarge training us how to start the programs.

We decided to focus more on DS2 because his needs are greater, but DS1 will be doing most of the same work, plus a few things of his own.  It's just me and the boys during the week because my husband works long hours, so the boys would be together doing the work anyway.

On the day of the evaluation I didn't give DS1 his adhd medication (concerta) because I am getting very concerned about his lack of appetite and because I thought it might be helpful for Sarge to see him without it.  He was so impulsive and all over the place it was disheartening.  DS2 wasn't much better with the influence of his big brother and the stress of being asked to do things that are hard for him.  I was aggravated and frazzled (when am I not?  sigh...)

Sarge has this chart "The Ontogeny of Human Neurologic Functions" which starts at birth and goes thru 12 stages to around age 6 and covers the categories of vision, auditory, tactile, mobility, language, manual.  By going over each skill and stage, he measures whether the kids are functional, need work or are lacking in each area.  As we go along he will periodically retest and we will be able to measurably see the progress the boys make.

We will go up to see Sarge every 2 months or so with a full reevaluation at 4 month intervals.

How I learned about Active Healing, Inc.

My husband started seeing a new chiropractor a few months ago and really likes her.  She and I got together to talk about me coming to work for her part-time (I'm a massage therapist).  As the conversation meandered, we started talking about my boys and their issues.

She mentioned her friend & associate Sargent Goodchild at Active Healing in Magnolia, MA.  (There's an interesting name!)  She had a lot of positive things to say and suggested I contact him for a free screening.  I did and brought the boys up to see him in August.  He picked up on enough stuff in the brief free screening (no surprise to me) that he thought he could help them.

My husband and I went back to see him to learn more about him and what they do there and ask him lots of questions.  My husband and I talked it over and thought long and hard about the cost of the program and the potential benefits if it works like Sarge says it will.

Many of the things Sarge talks about make sense to me based on other things I have read and researched.  Some of the things are more 'out there' and I'm not entirely sure about yet.

We decided to give it a go.  To imagine that in 12-18 months my son's developmental delays can be integrated and he can catch up with his peers is very exciting.  Honestly, what better thing in the world can we spend our money on?  I keep thinking that we are taking a leap of faith.

Retained primitive reflexes

I find this a fascinating topic. Something I hadn't heard of until a behavioral optometrist tested DS2 for them and found some. I have since googled the heck out of it and found a lot of info.


Primitive & Postural Reflexes
As the infant brain develops during the first year of life connections to higher centres in the brain become stronger and increasingly take over the functions of primitive reflexes. As this occurs, early survival patterns are inhibited or controlled to allow more mature patterns of response (postural reflexes) to develop in their place.

The postural reflexes support control of balance, posture and movement in a gravity based environment. Postural reflex development is mirrored in the infant’s increasing ability to control its body, posture and movements.

Some children fail to gain this control fully in the first year of life and continue to grow up in a reflexive ‘no man’s land’, where traces of the primitive reflexes remain present and the postural reflexes do not develop fully. These children continue to experience difficulty with control of movement affecting coordination, balance, fine motor skills, motor development and associated aspects of learning such as reading, writing and physical education.

Retained primitive reflexes can also affect a child’s sensory perceptions, causing hypersensitivity in some areas and hyposensitivity in others.


Some sites with more info:
http://www.inpp.org.uk/
http://www.covd.org/

DS2 - Details on his issues

I know this post is very long and boring for most of you, it's more for me to just get all this down in writing.  I promise to try not to be so dull in the rest of my posts!

Thru the pediatrician we started the evaluation process (when we saw gross motor issues) back when he was 3. The hospital evaluation prompted us to get him evaluated by the school system where he first qualified for PT at age 4. Their follow up suggested he get tested for OT which he also qualified for and has been receiving since Kindergarten. They also suggested he be seen by a neurologist to rule out any physical spinal problems.

We saw a neurologist who suggested an MRI and FMAER/EEG/qEEG (I suggested the qEEG and he thought it was a good idea). The MRI was abnormal, he has a syrinx at T8 (space filled with fluid slightly larger than usual) and a thickened, fatty filum and possible tethered cord. We met with a neurosurgeon who thinks the syrinx is not a problem and was unsure if the fatty filum is an issue and contributing to his leg weakness (one more than the other). It can also cause pain, but he only occasionally complains of leg pain during the night which may or may not be related. Follow up testing to see if the nerves are being affected seemed to indicate they were not, so surgery should not be needed. (it would be a quick snip of the cord in the sacrum area and relatively minor)

The hospital did the FMAER and EEG, but not the qEEG which they didn't tell me until after the fact. The dr told me one thing and the testing dept told me another. It was a long story which I will spare you, but I was very upset and we switched neurologists. The 2 tests they did had some abnormal results.

From the EEG report: "There are two bursts of generalized slowing at 3 Hz with notched contours (left>right). This notching may represent admixed irregular spikes.

This EEG record is abnormal due to rare intermittent generalized slowing with notched contours."

From the FMAER report: "The 4 Hz steady state FMAER shows a very well developed left temporal-central response. However, there is a poor right central-temporal response with a clear 4 Hz following response noted just in the right posterior temporal (T6) region.

The borderline FMAER shows a poor right sided response in the face of an excellent left sided response.The relatively deficient, although present, right sided response may have other implications as regards subtle auditory processing deficiency or right temporal dysfunction in general."

We met the neurologist in August to review the results. After he realized that my son is left handed, he wondered if his brain is a mirror image of most people. He said about 50% of left handed people are right/left brain switched. If that is the case for my son then the report shows auditory processing issues.

In addition to these evaluations, we had his 504 Plan review meeting with his school in December of Kindergarten where I was a bit blind-sided by the many problems they told me he is having at school. Trouble with visual processing, attention, fine motor, motor planning and anxiety. Because of his fine motor trouble (his hands tremble a lot during tasks) he has trouble with cutting paper, coloring and writing. I think he sees how much his work differs from the other kids at his table and he gets anxious. He often says he can't do things and asks for help. His OT said it's like he has a block - once he perceives something as difficult he shuts down and says it's too hard or often tries to distract from the task by being funny or telling stories.

The school agreed to do CORE testing of visual perceptual skills, early academics, psychological and speech/language and he then qualified for an IEP. His tests show he is average to above average in intelligence, reading and math abilities. They all say he is a sweet boy with a great disposition, no behavioral problems. He loves the social aspect of school and has many friends.

The OT visual perceptual skills were problematic. He had difficulty tracking and scanning, crossing midline, converging/diverging, etc. This was news to me, I didn't realize.He also had a full evaluation with a private behavioral optometrist which showed a lot of issues. She noticed that he seems to have a pattern of overconvergence and his vision is tunneled down. His eyes work hard to keep things clear which causes fatigue over time. He has trouble getting his body to reproduce what his eyes see. He is delayed and still motor system dominant (as opposed to moving to visual system dominant) which is why he still constantly needs to touch everything.

She thinks he has trouble with primitive reflex integration. This is something I hadn’t heard of, but sounds like it might really help explain a lot of his issues. One fascinating example was when she asked him to stand next to her and copy what she was doing – put his heels together, point his toes out and take a few steps (walk like a duck). He struggled a lot and really wasn't able to do it. While concentrating on his feet, he didn't seem to realize that he was twisting his arms outward and moving them around a lot. She then asked him to try pointing his toes in (like a pigeon) and his arms turned in and his elbows went up to his shoulders (like a scarecrow).

Impression and Recommendations:  "DS has not fully developed his visual tracking, focus flexibility and eye teaming stamina to support maximum academic achievement. In addition, he has not fully integrated primitive reflexes and struggles with visual motor integration and higher level processing of visual information. Less than optimal visual learning abilities will impact school, sports and play (social interaction). A success based vision therapy program will help him develop his visual efficiency and processing for maximum school and life success."

In addition to all this, around Xmas we discovered that he is color blind. He doesn't see red and green. He has trouble telling blue from purple for example. He sees colors and can often tell you if something is red or green, things just look differently to him. This is genetic from the mother and I learned that my mom's uncles were color blind, too. (My mother didn't even know this was in her family, but she and I must be carriers.)

In June 2010 we saw the new neurologist who specializes in behavioral neurology and learning disabilities and comes highly regarded. He said we would take a 'wait and see approach' and see him again in November once school is underway.

I wonder if he has adhd, but it could be that these other issues are the cause of his excessive talking and lack of attention. When his brother isn't around to get him riled up, he actually isn't nearly as difficult as his brother.  Also, auditory processing problems can also be the cause of many of these issues, but he is too young to be evaluated for that yet (usually age 7-8).

I also wonder what life is like for him with all these issues. How different must things look and sound to him and how much does he have to muddle thru it all? I give him a lot of credit for doing as well as he is considering all this stuff he has to deal with. I just want to help my little guy succeed and feel good about himself.

Summary of the issues

Son #1 has ADHD with anxiety, Dysgraphia (deficiency in the ability to write, regardless of the ability to read, not due to intellectual impairment) and is gifted.  The term twice exceptional, often abbreviated as 2e, is commonly applied to high-ability children who have learning difficulties. It refers to the fact that these children are exceptional both because of their intellectual gifts and because of their special needs.

He is in 4th grade at the public elementary school and on a 504 plan, receiving OT twice a week for handwriting help.

Son #2 has Dyspraxia (motor learning difficulty that can affect planning of movements and co-ordination), also known as Developmental Coordination Disorder, along with visual processing problems.  I also suspect auditory processing problems, but he is too young to be tested for that right now.

He is in the 1st grade at the public elementary school and just transitioned from a 504 plan to an IEP where he receives both OT and PT twice a week each, along with classroom accomodations.