1840 Part Two

This is the post I'd have written first if I were a better person... sigh...

My son got his SAT scores this week and there is a crowd of people I should share that with--because of the help and support they gave. There were some notable stinkers who I really want to TEACH (not slap, teach!) about kids and their potential. In the beginning believers were few and far between--but remarkable--and in recent years there have been more and more.

I would start with our family--we have a large and diverse family who have always seen Tom as having potential. I know a woman with a son not unlike Tom in many ways whose family treats him... badly. We are lucky and I am grateful.

Then there was Jenn's OT. I went for quite a while with a stomach ache about why Tom couldn't zip a zipper. I had an OT in my house every week, but she was there for Jenn. One day I finally did ask and she was really helpful. Gave me some ideas, language to use when talking to professionals and strategies for building progress (lots of crawling... tunnels, etc...)

I would also have to thank the Down syndrome community because they taught us enough about living with disability that we were ready to go when Tom was diagnosed. The Advocacy Center in our town who teaches advocacy skills gave me the understanding of the systems that were available and how to access them--great allies to have!

The developmental pediatrician who evaluated him, and then took my tearful call when the literature she gave me said that my son had a sad and limited prognosis. She told me outright not to believe that. She said to use his language strengths to meet his other needs, build accommodations when needed and NEVER give up. She told me to think about what early literature said about people with Down syndrome and what they believe now... Be informed by the literature, then use that information to build the life he wants.

This developmental pediatrician moved away some years ago--wherever she is, they are lucky to have her.

I would thank Mrs. T. from one of the children's programs in our area. They used to offer little 'courses' about science: under the sea, geology, anmimals, etc. Tom loved that stuff so I put him in one that did not work AT ALL. He was with all girls and they made little pictures and crafts all class. I picked him up and he had this little wrinkle in his forehead that didn't go away for hours. I spoke with the program director who moved him Mrs. T's class because Mrs T. had an 'active teaching style' (aka WILD!) What a difference! Lots of facts, lots to do and see and touch, much to learn. Those classes turned a lightbulb on in Tom. Love of learning was ignited and has stayed with him.

While gradeschool was often frustrating there were always members of Tom's team who were believers--thank heavens! The naysayers were tough but never got the power they could have had because there were others asking questions or pointing out that he did always handle CERTAIN things fine... They kept the momentum going and I thank them.

I want to thank a guy named Bruce. He was part of a consulting group--two men who taught school and also did consulting work. They taught companies to use the potential of their worker and they taught presentation skills (probably among other things, but I really don't know.) I was at a presentation on presentation. They talked a lot about different types of learners and in one of the breaks I was having a conversation with Bruce and something he said made me think about my son. I mentioned that he was considered distractable, did terrible taking notes, etc, but then he would ace tests and frustrate his teachers to no end. He said, "Maybe he just can't produce output and take in input at the same time--see, no one talks to him when he's taking a test. Many people can't juggle."

Best thought ever! Perfect description for a kid he'd never met. Perfect timing too.

7th grade. When taking notes becomes very important. I took that back to Tom's team and that phrase set everyone free. He became one of the better students. A couple teachers even called him a favorite. (He does also have a very strong auditory memory which works in his favor.)

The school psychologist who evaluated him for his last triennial was amazing. She called me part way through testing to ask if she could do a couple more tests with Tom because she had never seen his learning pattern before--and she had already discussed this with him and he was interested too. I said sure! She gave us the best profile about Tom and his learning and thinking skills--and needs. She laid it all out for him beautifully. She told him he would have to manage things always to be successful, but that MANY portions of the world are wide open for him. She explained and answered Tom's questions--he's walked a little taller ever since.

He told me after that he always HOPED he would be ok, and BELIEVED he would, but now he thought he WAS.

Want to see your mom cry? Tell her that.

The junior high and senior high teachers in our district are also extraordinary. A lot of them read the paperwork and worry about having Tom in their class, but to a person they have all come around once they got to know him. He thinks his classes are interesting... I think they appreciate that. (He is a teenager and doesn't always make the best choices about everything, but they quickly learn the difference between a learning issue and a bad choice!)

And the special education teachers in our Junior and Senior High Schools are amazing. Tom got an IEP in 7th grade. The special ed teachers consult with his teachers and work with his accommodations. This means, among other things, that they sit for HOURS proctoring the exams where he gets extra time.

I spoke to one of them about that once and she told me that extra time doesn't help if a kid needs to know more, only if they need to produce more. And that's Tom. Processing time and the mechanics of production are slowed (though keyboarding is certainly faster than handwriting.) This teacher told me she LIKES working with Tom because when they put the accommodation in place he performs... She said that's what she went to school for.

And most of all credit goes to Tom himself. He keeps on keepin' on, no matter what people say to him, whether they work for him or against. He learns and grows and keeps going... Congrats Kid, You did good!

This is a score. Not a guarantee of an easy life or productive carreer. NVLD doesn't go away and I know that, but it is a step toward a carreer that interests Tom... and maybe a bit of a sign that some of the things we have learned along the way about NVLD have been right--at least in how they affect my son.

1840

My son got his SAT scores back yesterday.

I am so tempted to send it to a few people.

Like the teacher who told him when he was 8, "You're just not as smart as your mom thinks you are."

And the teacher who told the IEP committee in 4th grade that she "Did NOT believe in him... at all."

And the IEP team that told me that if he needed accommodations he shouldn't be in (their) academically challenging classes.

It feels very good to be right.

Oh yes it does!

Book Review: Late, Lost and Unprepared by Cooper-Kahn and Dietzel

Late, Lost and Unprepared: A Parents' Guide to Helping Children with Executive Functioning by Joyce Cooper-Kahn, PhD and Laurie Dietzel, PhD is a breath of fresh air. It offers a positive and practical approach to the maddening issues of Executive Functioning Disorder.

The executive functions are our brain's coordinating and directing functions. They include such skills as planning, organizing, scheduling, initiating, emotional control and working memory, to name a few. These functions can be disordered in anyone and can be affected by upbringing, experience, maturity and disability.

When these functions work smoothly, life goes well; and when they don't, it just doesn't.

From what I have found, there are traditionally 2 approaches to executive functioning difficulties: The first is to write the child off as lazy. The second is to write long, dull, negative, theory-dense, strategy-thin, tomes about it.

Neither of these approaches has helped my family much.

This book breaks that mold. This book is short. It is divided into 2 sections. The first discusses what the Executive Functions are, how they affect our lives and how they are assessed. The second section explains the process of changing behaviors and then has a chapter about each of the 8 components of Executive Functioning.

Each chapter in this section includes explanations, short term strategies, longer-term approaches for reducing support/increasing independence, and advocacy tips for working with your child's school on the issue.

The book is designed so that you can go directly to the chapters you need. So if my son is having trouble getting started on activities, but no difficulty with impulse control you can read the one chapter and not the other.

Each chapter offers lots of strategies for change--the strategies are concrete and doable and the overall tone is positive.

For my son who has Non-Verbal Learning Disorder these issues loom very large and I have been sharing quite a lot of the book with him as I go. For my daughter who has Down syndrome many of the same concepts apply.

The book offers strategies to meet a variety of learning styles with somewhat of an emphasis on auditory prompts and reminders. For my son these are great as-is, for my daughter the auditory prompts in the book require simplifying (a modification I would expect to make with most things.)

I am finding this book useful for helping my son and daughter with their differing diagnoses, I have shared a few nuggets with my other daughter and have even claimed a few strategies for myself!

That's my idea of a helpful book!

Picture and to learn more about this book click here.

Some Things I have Learned about Learning

Over the years working with our kids' teachers I have run into a few glitches in the common beliefs about learning that didn't work for my kids. I thought I would detail some things that didn't go the way I had expected so you could analyze your own programs and interactions and iron things out early.

Organizational Skills: One year my son's team agreed that my son did not have these skills and decided that he needed to learn them. They tried positive reinforcement, they tried negative reinforcement, they tried ignoring the deficit, they tried orgainzing for him and nothing worked. EVERYONE was miserable and frustrated.

After a ton of discussion it became clear that they were treating organization/disorganization as a behavior, rather than as a skill.

After this they started explaining, modeling and giving him practice, the way they would to teach other skills. THEN they started seeing some positive results...

Behavior: My daughter always rode the 'regular' bus with the rest of our neighborhood. In first grade she suddenly started throwing her shoes on the bus. Now, this is obviously a dangerous thing to do--clocking the busdriver, or anyone else, is not conducive to safe arrival... So, they put an aide on the bus for safety. The aide sat with my daughter and my daughter stopped throwing shoes...

One day I ran into her busdriver in the grocery store and I said that I was so glad that we had solved the shoe problem. He agreed that the shoes had stopped flying, but then he said something eye-opening. He said that we didn't really know if she had learned or was just stopped... He was right of course. There is a difference between being good and being controlled.

I called the school that afternoon and we had the aide moved out of my daughter's seat to allow my daughter to make choices, but to intervene if she made the wrong one... A much better plan, if you think about it.

It should also be noted that compliance by itself is not an appropriate behavior goal. One team I know of wanted to make "will not say NO" a goal for my friend's daughter. If she can't say no how would she deal with unsafe situations and people? That was NOT an appropriate goal.

For another disturbing behavior experience read this post.

Flashcards: Testing and teaching are two different things. You can practice retrieving information that someone knows by using flashcards, but you don't TEACH info by asking someone repeatedly if they know something. Enough said?

Reading Comprehension: I learned this mind-changing thought from David Koppenhaver: To teach comprehension let the reader know BEFORE they read what they are looking for. Endless quizzing is testing, not teaching.

You can do this with a beginning reader as you read. Pause and say "What is Junie-B going to buy?" Or "What is Charlotte going to write?" For Social Studies or Science let them see the questions at the end of the chaper before they read the chapter as well as after. Or teach them to ask themselves what they want to know in the upcoming reading...

Think about it, it makes sense. Do you have a better chance finding what you want by sending your kids to just go look around the house for a few minutes and then asking did they find your phone charger? Or does it work better if you ask everybody to look for the phone charger?

Discrete Trials: While this method is popular and effective for many kids, the applications needs careful consideration. For my daughter it seems to make disconnected information silos in her head. For what she learns to be useful to her she needs webs that connect new info with old in meaningful ways--this helps with retrieval. It also makes what she learns meaningful to HER, not just meaningful while being mediated by a partner in a certain proscribed way.

The Fry Word List: When Jenn was younger her team was looking for ways to teach her reading where they could document their results. They spent hours and hours working on this list of 300 or so words... The problem was that this list is made entirely of small words like if and and and the. Not a noun or a verb among them. It is totally boring. And after hours of tedium, when you can finally read the whole list there is not a single book you can then pick up and enjoy.

A lot of time and effort, excellent documentation, but no meaningful literacy gained. Another activity that only had meaning when someone else was there--if you found her word cards out of context--say on a bus seat--they would mean nothing to you or to her.

3x5 Cards: These are the bane of my son's existence. Teachers REALLY love them. My son can't write on them. He can't jot notes on little bitty cards and by the time he has he has memorized his note and doesn't need the card. Every year we have to discuss this. Every year. When sitting in meetings it is hard to think of alternatives. One can copy a page (using a copier)and highlight the needed info. One could do lots of things on the computer...

Readiness: It's not all it's cracked up to be! One of my son's teams wanted to remove him from the strong academic classes because he couldn't keep up with handwriting (pointing out that Stephen Hawking has "handwriting difficulties" yet still makes use of his education made everyone chuckle and re-think!) Readiness seems like an important concept, but even if my son can never handwrite well he will build his life on the info he has learned. We can teach skills, but we can't stop that info to teach the skills. Ever.

Readiness is also frequently used as a reason not to do things with my daughter--it's a reasonable goal, but should never be a barrier. Whether or not she knows her colors, she should be taught other things. (She does, but I'm just sayin'...)

I hope these examples help you analyze your own situation and avoid some pitfalls. Do you have other examples?

Shedding a Little Light: NVLD Strategies That We Have Tried

Since my son's diagnosis with Non-Verbal Learning Disability in the 4th grade we have done a lot of learning.

When he was diagnosed I turned first to the literature... this turned out to be a huge mistake. Not only is much of the literature distressingly negative (I actually threw one book away so my son would never see it!)The literature also offers pitifully few useful strategies.

I did eventually find a book I liked (see right sidebar.) From this and from our experiences with our daughter we found/developed some things that worked for my son--ways to improve skills and ways to mitigate or accommodate weaknesses.

I know each person is individual, but thought if I shared the way we analyzed situations others could build on them.

1. Begin by trusting yourself and paying attention. You can figure out ways to approach most issues.

2. Analyze your situation. I know, for example, that many of my son's difficulties come from integrating two tasks at once. I know that if I can figure out the words to say he can understand a lot. And I try to know what motivates him--and what doesn't!

3. Figure out specifically what is needed. Somtimes skill practice is in order, sometimes an accommodation is in order--sometimes you go over the mountain, sometimes around.

4. Learn your rights and develop advocacy skills. There are many things you can work on at home, but you will most likely have to negotiate with someone somewhere along the line. This is another learned skill--read, study, practice.

Here are some specifics that maybe you can springboard off of:

Visual skill practice:
-video games (choose strategically.)
-sports
-bike riding
-map reading
-sorting
-folding (laundry or origami!)
-crafts
-crosswords/word searches
-playing catch

Logic and inferencing:
-Lots of discussion about what would happen if...
-predicting sports, discussing outcomes and what would have been different if...
-comment on movies, tv, other situations
-storytelling and creative writing

(Remember, your child may process best verbally and may do a lot of their thinking out loud. Don't interrupt or answer too many of their questions too quickly if this is the case. A short answer seems convenient, but stops them thinking. Lots of "Hmmm, that is a good question... what do you think??")

Social practice:
-analyze situations out loud
-practice scripts for starting conversations in predictable circumstances ie: phone answering, calling someone, etc (this buys time for processing the unfamiliar)
-discuss what you see on TV or in movies

Math
-explain processes verbally
-have them explain their processes verbally
-when lost analyze where they got lost--one child I know got terribly stuck because they missed the definition of the words sum and product... lots of lost ground, but a very simple solution in the long run.
-Look for teachers who use lots of verbal explanations.

Executive Function (organizing self, work, starting, finishing, analyzing)
-Clear bins for storage if visual memory is poor
-calendars with alarms
-my son can't estimate how long something will take so I tell him he must prioritize by need/due date, (In other words do homework first, don't just leave an hour for it--this is not perfected yet!!!)

These are my ideas. What are some of yours? What strategies have built bridges for you or your child?

The picture is of my son and the Charlotte Lighthouse--not Char-lit like NC, Char-Lot as in part of Rochester.

Hope and Non-Verbal Learning Disorder

When you look at the literature that is available about Non-Verbal Learning Disorder you begin to think that HOPE and NVLD are mutually exclusive terms.

This negative portrayal really bothers me. I think it is the result of a number of things, the first being a system that only give grants to researchers who are working on a "PROBLEM." Another is a society that believes in the medical view of disability which tells us that the world is full of 'normal' people and 'not-normal' people and the entire goal of group B (the 'not-normals') is to become like the group A ('normal') people.

To me, this is ridiculous. While the group B folks are hanging out in their petrie dishes being evaluated, no one is noticing that group A is empty...

There are a bazillion people making their way in this world and ALL of them have some sort of difference, some sort of uniqueness and, in truth, some sort of 'abnormality' (most of them have nothing to do with any diagnosis!)

That medical model of disability also teaches that a diagnosis is a rigid, unchanging thing and that the outcomes of diagnoses are solid and immovable.

Well, I am here to tell you: 'Tain't so.

As many of you know, I have three children. Among them is my son who has NVLD and my youngest daughter who has Down syndrome.

Well, here's something you may not know:

People with Down syndrome are living longer, living healthier, and achieving more than the medical profession ever predicted. And Down syndrome is an extra chromosome (21st.) What could be more unchangeable and set-in-stone than an extra chromosome??? Yet lives and skill-sets and other indicators are improving every year...

If this is true about Down syndrome, how could it NOT be true about NVLD??

Well, it is true about NVLD.

More than that, there is no percentage in believing otherwise.

There is an excellent book by Carol Dweck called Mindset: The New Psychology of Success. In the book Dweck says that there are 2 schools of thought in the world.

The first believes in definitive skill sets that do not expand. If you have them, you have them. And if you don't, you don't. Much of the world--certainly much of medicine and education--belongs to this school of thought.

The other group believes in the possibility of improvement--for anybody in any area.

To me, this stands to reason. I believe that there are talents and skills that start some people off well in a certain direction, but I also believe that anyone who works on something--pretty near anything--can improve.

Think about it, I am not athletic, but if I started exercising I could become more fit--all areas could improve: cardiovascular, strength, coordination, endurance... If I worked out regularly and well over time, I could even beocome quite fit. (I am exhausted just thinking about it!

Now, it's likely I will not ever be able to play for the Buffalo Bills (no matter how much they need me!) There are indeed some limits that will not change. In fact, there are LOTS of people who don't get to play for the NFL... with and without NVLD.

On the other hand, could I do more or better if I worked at it? Sure.

My brother is a state trouper which is what he always wanted to be. When we were kids he used to practice observation skills. He would look at a new situation, look away quickly and quiz himself on what he saw and then look back to see how he did. (He wanted to practice guessing how much people weighed but my mother would NOT let him go up to people and ask them!) Nowadays it is amazing how much information he takes in when he looks into a room or when someone walks past--trust me, he wasn't born that way!

All this is to say that a diagnosis is a starting place. And all it does is show a pattern of strengths and needs. Your child can use their strengths, and they can work on the areas where they are not strong, if they want to, and get stronger. Just like anyone else.

I have written before that my son's social skills have gotten more fluid over time, as have many of his physical skills.

Other things have not changed much. Some because he doesn't care to work on them (handwriting--why bother when he can type?), others he just hasn't much impact with--yet.

A growth mindset alone can take you far--add in accommodations and resilience and there are tons of approaches for most any situation.

The issues with NVLD for yourself and your child are real and can be frustrating, but there is still room for growth, there are opportunities to succeed and there is room for hope.

Today, the pep talk. Tomorrow some strategy ideas...

Unexpectedly Effective Advocacy Skill #6: Analogies

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

One of the techniques I have used to reach understanding with people who work with my kids is word pictures or analogies. Now this must be applied with a respectful touch--like anything else it could be insulting if you are not thoughtful (Obviously insults NEVER lead to understanding--which is in fact why people use them, but I digress... )

Sometimes, with our complex and highly individual kids, it can be hard to get people to understand them. It is common to try reports, evaluations, expert testimony, but sometimes providing information is not not enough to build understanding. (I have blogged about this before!)

When you are negotiating with a team about placement or classroom strategies or with legislators about removing community barriers and information fails to build the needed bridge many folks get frustrated and stomp out.

I would suggest that they have more tricks to try--they aren't done yet.

The next thing to try is a description of the things that are happening now (for example if your child is succeeding in Sunday school but not in Social Studies) or things that are possible if the new strategies or laws are implemented.

This is the time to be descriptive--supporting this with photos and more can also be helpful.

Yet, sometimes this fails also. The people you are talking to don't see what you mean still, they don't see how this relates to them--or they plain don't believe you.

Nope, it still isn't time to quit or throw huge tantrums--tempting though that will be!

Along with all of the above tools I recommend the using of analogies, metaphors and comparisons to add reach to bridge you are trying to build. When a teacher or a legislator is not be able to imagine our children responding the way we say they will or that they should do what we are saying they should, try comparing the situation with something familiar that seems similar in tone.

Over the years I have compared:

*My son's accommodations--which his team saw as cheating--with eyeglasses (I tell the whole story here.)

*My daughter's need for both OT and PT with her need for both mittens AND boots.

*My son's need for separating input from output when he learns with juggling (and my lack of ability to do it!)

*My son's need for teaching organization skills with the way Spanish is taught. (This one started out REALLY heated because they were one day trying to encourage him to be organized by telling him he was smart, the next day they tried negative reinforcement and kept him after school... no one was teaching him what they wanted him to know.... grrrr....)

*My son's learning disability with a scene from a popular movie where someone was walking along through the woods and suddenly fell into a hole and no one knew where the character had gone. Can't remember the movie right now... some army flick...

Something to add to your bag of tricks... let me know how it goes!

Picture from here.

NVLD and Social Learning

During my Partners in Policymaking course I was privileged to hear Al Condeluci speak. Al is the Executive Director of UCP in Pittsburgh. He grew up with a cousin who had Down syndrome and has been a lifelong proponent of quality lives, relationships and belonging for people with disabilities.

His talk at Partners was a how-to seminar on joining and belonging to integrated groups for people with disabilities. His warmth and enthusiasm were contagious and his strategies were completely practical and useable--and honestly would work for anyone.

He said that people usually join groups around interests like gardening or trains or photography or Civil War re-enactment rather than around characteristics.

So the first step is to determine an interest. After that, there are a few things to observe:

* People who BELONG in a group share a common vocabulary (for example for photography: camera, film, digital and flash for starters) as a beginner you don't need expert vocabulary, but try to learn some of the basics.

* There are social customs or patterns that people who BELONG to a group observe. For example, certain people always sit in the same seat--if you wish to BELONG, do NOT sit there. Watch the group for a bit to notice the way things are 'always done' and respect that. You can make additions and help with changes once you really belong, but NOT in the beginning.

*Groups follow a typical bell curve. 20% Negative, 60% undecided (waiting to be seduced is what Al called them!) and 20% what Al calls Positive Gatekeepers. Many folks make the mistake of begging for the good graces of the negative folks which they will NOT ever give you--forget them. Observe the group to figure out who the Positive Gatekeepers are--they are the conduits to belonging. They will say "hi, come with me, let me introduce you to everyone!!" because that is just who they are.

*Introduce yourself to the positive gatekeepers and ask them to bring you aboard.

I went home from Partners and tried this out a number of times for my daughter who has Down syndrome, with excellent success. I never gave it much thought for my son, until one summer he was in a drama group and bringing a book with him to read on breaks.

I mentioned to him that people who saw him with a book probably wouldn't talk to him much because they would think he was busy... He said the kids were playing cards during breaks and hadn't asked him to play.

Thankfully, I thought of Al's talk.

"Do you know how to play the game?" I aked. He said he had watched and thought he did know the game.

Then I pulled out my notes and showed them to him. He had indeed noticed some of the social customs I was talking about.

The next day he want in, book in hand, to watch for who the positive gatekeepers might be.

He came home with a person in mind.

He said it would be awkward to ask, but I assured him that positive gatekeepers do this for everybody and won't even notice. Then we had to come up with a question to ask. He decided on, "I think I have figured out how to play the game, could I try?"

The next day he got out of the car with his book again...

When I picked him up he told me he had played cards all day, and the next morning I noticed he left his book at home.

Continuing Growth.

It has been several years since that summer cardplaying success. Social stuff still doesn't always come easy, but it is ever improving.

My son still starts conversations in the middle without giving context sometimes... and he still is more comfortable with smaller groups than larger ones. And I am always looking for strategies that I can explain that will expand his repertoire. (In fact he read this post by Stephen Drake and said he was going to remember this to try.)

And two weeks ago he went to a big end-of-the-schoolyear event. When I went to get him I expected to see him sitting at a table, or pacing around the activity as he often does. But no. He was out on the dance floor in the midst of a huge group of kids dancing like a wild man--like everyone else...

Will he be able to do that every time? Who knows?

Frankly, no teenager is socially smooth every time!

Growing and learning are lifelong processes for EVERYONE--NVLD or no.

Non Verbal Learning Disorder and Social Learning from the Beginning

One aspecct of Non Verbal Learning Disorder that many folks find challenging is a lack of social fluency. Fitting in can be very tricky.



For my son this is an area where he is continually growing so I thought that I would (with his permission) share some of our experiences.

When my son was little--long before he had a diagnosis--he would have reminded you of Lt. Commander Data from Star Trek: Next Gen. He spoke in a sort of clipped way, he did not use contractions, and the timing of his responses in conversation were delayed.

Over the years this dissipated. People that we camped with every year remarked at one point that it used to be when you greeted Tom he would take forever figuring out who you were and why you were talking to him before he could answer. "Now," our friend said, "when I say hi, he says hi--it's great!"

Neighborhood interactions could be a bit tricky between his hesitant style and his very literal thinking. Another 4 year old (or more likely, 6 year old) yelling "I'm going to KILL you," would send my son running home in terror.

He was about 4 when I explained that 'exaggerating' means saying something much bigger than you really mean to make things sound exciting. I would make a big show of saying "I told you a million times," or "That was the loudest noise in the WORLD!" and I would compare flying bugs to birds, or airplanes.

Once my son got the hang of it he LOVED it. He thought it was so funny.

And the next time the kid down the street yelled at my son that he was going to KILL hiim, my son turned to him and calmly said, "Exaggeration." Since the drama was gone the kids pretty much stopped pushing that button.

And I learned that I could explain social things to Tom and he could get it.

Not long after that I had the opportunity to mention to him that crying makes mean people meaner. He thought that was just awful (and so do I) but he saved what he could of his need to cry for the safety of home.

Another fun lesson was puns.

At dinner when I asked him if he wanted to put cheese on himself he would answer in horror, "No, on my spaghetti!"

Or if I asked if he wanted me to put his coat on he would tell me that it wouldn't fit me.

Which would have been hilarious, but he was serious.

So I pulled out the primer of punniness, Amelia Bedelia, and 'splained it to him... again, once he caught on, he couldn't get enough. He graduated to the Xanth "Trilogy" by Piers Anthony by the time he was 12 for the sheer joy of it. Frankly, I think much of his enjoyment is because his first thought is still so literal.

Next up: Joining groups.

The Kobayashi Maru: Lessons About NVLD from Down Syndrome

This is my favorite Star Trek scene, from The Wrath of Khan where Kirk says, "I don't believe in the no-win scenario." Well neither do I!

As I have mentioned before, my son has a diagnosis of Non-Verbal Learning Disorder. For some unknown reason (though Karen has a theory!) I always posted more about Down syndrome than NVLD (or NLD as some folks say) until recently. (Here is the link to my first post on NVLD)

As the parent of a child with Down syndrome who was diagnosed at birth I had some definite advantages when my son was diagnosed with NVLD in the 4th grade. I had many connections in the local disability community, had expunged any disability prejudice that clouded my thinking, and I knew a lot about development, advocacy and rights. There is lots and lots of data available about Down syndrome and nowadays most of it is positively stated. And there is a well-formed and experienced community of families of people with Down syndrome to guide newbies along.

Parents of children with NVLD diagnoses get NONE of these advantages out of the gate. It is really pretty pitiful.

So, I want to offer a disability primer to ease the learning curve a bit for you. Some of this is mindbending stuff because of the society we live in, but trust me, if you get your head around this stuff you and your child will both be better off!

First about disability in general:

As it says in the DD Act:

Disability is a natural part of the human experience that does not diminish the right of individuals with disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural and educational mainstream of American society.

For more about the natural-ness of disability read here.

Disability means that part of your body works differently. Not better or worse, just differently. Some folks see, hear, get around or learn differently. There is no heirarchy--my near and farsightedness (!), my son's diagnosis of NLD, my daughter's diagnosis of Down syndrome and my friend's Cerebral Palsy are equivalent.

The sooner you come to the decision that disability is FINE, the better off you will be and your child will benefit from your belief in them--doubt is poisonous and they will get plenty of that from others. Too much fighting the disability gives the strong message to the child that they are not ok... and if you exhibit pity or unacceptance for other disabilities your kid will make the jump that disability (and they themselves) are bad. It will help all of you to get past this!!!

Now, about experts: Down syndrome is a chromosomal issue and there are literally hundreds of possible symptoms. No one with Down syndrome exhibits all of them--or even most of them! Down syndrome plays out differently in every single individual. As my friend Laura told me when my daughter was born, "When you know one person with Down syndrome, what you know is one person with Down syndrome!"

Because I know tons of families, I know there is a range and expect individual strengths and needs that don't necessarily follow a 'Down syndrome profile.'

When it comes to NVLD the literature implies that folks all present the same way. This is dead wrong. I know several people with the diagnosis and they are all quite different from each other. They sometimes have some commonalities, but they are all unique individuals.

The literature about NVLD is also FAR more negative than anything you read about Down syndrome nowadays. I think this is because it is a newer diagnosis. The literature out of the 1970s about Down syndrome was terribly discouraging as well, but has grown as clinicians, educators, parents, folks with the diagnosis and others have gained experience.

Trust yourself and trust your child FIRST. Be defiant about it! This is a medical diagnosis, it is not a script.

You will build a life that suits your child, you will stand up to naysayers, you will challenge systems that don't work, you will problem-solve and you will create--and your children will learn that from you.

You can do this.

Repeat after me:

You can do this!

Non Verbal Learning Disorder and Us

It was interesting to read in the new blog of Stephen Drake (of Not Dead Yet fame)about the negative experience he has had with the diagnosis and literature of NLD.

My son started on the path toward his diagnosis in pre-school. I was having a really hard time teaching him to zip his coat and asked my daughter's OT for suggestions. She watched my son struggle and gave me a bunch of suggestions and some literature about sensory processing to read. The info was a lot of help and once he was no longer facing the northern NY winters with his coat flapping I was happy.

When he went to school he demonstrated a quirky mix of really high level abilities in some areas and struggles and dysfluencies in other areas. Sometimes teachers loved him and other times he drove them to distraction. They did test him again at some point and found that he had an average IQ (turns out that was a pretty meaningless statement because the gap in his scores is so wide, but I didn't realize that was so significant at the time.)

In 4th grade formal evaluations took place. The words 'Non-Verbal Learning Disorder' were spoken for the first time. We were told a lot of test results and I was given a spiral notebook of information and strategies. When I got home and read through that notebook I was devastated. It was chock full of 'will nevers' and 'can'ts.' After stewing in it for several hours I called our developmental pediatrician (who was also a personal friend) at home. The literature made it sound like my son's prognosis held less hope than we expected for my daughter who has Down syndrome. I don't really cry much, but I was crying then.

Where the more familiar learning disabilities were characterized with (among other things) higher scores on the performance side of the IQ score and lower scores on the verbal side, in NLD the verbal scores are higher and performance scores are lower. There are difficulties with large and fine motor skills, reasoning, social fluency.

After my conversation with my friend that night I fluffed up my pink feathers and gave myself a talking to: this was not our first brush with disability, we already knew things about my son that exceeded the "will never" list that we had been given for example:

-He has always had a pretty funny sense of humor,
-We had already seen him overcome learning obstacles and then excel with the new info.
-We had already seen much progress with things like social fluency.
-We already had evidence that he drew connections between pieces of information that he had learned (though his way of expressing this often made people shake their heads!)
-My own verbal vs. performance abilities probably have a similar configuration and I am making it...

And most of all:

-He was-and is-a great kid!

We decided to use the suggestions we deemed helpful and toss out the rest of the book (I literally ripped the book apart--I did not want to take the chance that he would ever find and read it!) We decided to trust him and ourselves.

Since that time I have found a couple of books I do like about NLD: Bridging the Gap: Raising a Child with Nonverbal Learning Disorder by Rondalynn Varney Whitney and Raising NLD Superstars by Marcia Brown Rubenstein are two.

We arranged for a 504 plan for my son which was really never implemented so in 7th grade he was given an IEP. His modifications include double time for certain activities, word processing instead of handwriting (handwriting is and has always been impossible--his legibility is fine, but the motor-planning takes YEARS!), separating input from output (he can't write while listening, but he has a long working memory so he can record his notes later), and help organizing.

With these supports in place he succeeds. He does well in school, does well on standardized tests, acts in school plays, reads fantasy novels, plays video games and avoids dishes and bedmaking like every other highschool kid.

PSAT scores are back with very positive results so now we are working on learning what he will need to know how to do (like advocate!) to succeed in college...

Can he? We certainly believe so! We do not ever accept "can't" without proof anymore... actually, I only accept "can't right now" these days (and that only after a fight!)

And the only expert I believe about my son is him.

PS: Are migraines common among people with NLD, does anyone know? Everyone I know with the diagnosis has them...

See my other posts about NVLD here.