I have a son with some special needs—sensory issues, visual processing/possible auditory processing delays, anxiety, and the list could go on.  Nothing that “diagnoses” him with a particular disorder, but enough to make a difference in his (and our) life.  Like all parents of children with special needs we’ve tried to “help” by doing some OT (Occupational Therapy), Play Therapy, Social groups, Vision Therapy, etc. and I’m not sure how to evaluate their effect.  Certain things have improved, but maybe they would have improved with natural brain development that comes with growing up.  (He’s 7 now.)  I’m just wondering if any of you have tried these sorts of services that are somewhat “established” in the field, but not really “accepted” by the main medical community? 

I was also chatting with a doctor friend of mine who suggested that sometimes you have to just accept that there’s nothing we can do (medically) and just accept that life will be harder for him but that he will find his own place with the support of those around him.  Of course, that’s nearly impossible for a parent to do, but I wanted to see if anyone out there had any thoughts or experiences to share about these issues.

Vanessa

The youngest of my stepchildren was diagnosed with ADHD as a child, and while he wasn’t stupid, he drove me crazy, because he just didn’t seem to catch things.  However, there were a few indications.  For his ninth birthday I bought him a video game to play on the Apple II computer I had recently bought and hooked up to a TV screen.  I had checked it out and managed to get up to a little over 600 points in about ten games.  He was delighted with it and couldn’t wait for his birthday party to be over.  His mother and I were sitting in the family room talking, and he was at the computer, playing the game.  At the same time he was contributing to our conversation.  I happened to glance at the screen, and he had over 85,000 points.  And that was while he was listening to us.  Bizarre.

Now, he’s in his thirties and very enjoyable to take out to lunch and discuss philosophy, ethics, politics, etc.  I couldn’t understand how he could have changed so much, then I saw an interesting article in Science News a few months ago.  Apparently there’s a neural growth pattern with certain brain structures that children and early teens go through.  The researchers found that most ADHD kids don’t develop at the same rate as the other kids, but that some of them continued developing these structures in their late teens and early adulthood, so they seemed to catch up.  It appears to be a genetic thing.

While I know that Brennen and Doug will go through the roof, I suggest you check out research on various nutritional supplements.  For example, Creatine.  Five grams a day seemed to cause a significant memory improvement in a group of college students compared to a placebo group, and the results switched when they switched the groups.  This was an Australian study.

Occam

Vanessa, I think that you should be applauded for trying everything that you have and looking around for more.  It sounds to me like you are doing an incredible job of acting as an advocate for your child, and that is significant in and of itself.

Does your son have specific diagnoses?

I will get to the point so please bear with me!

I am dyslexic and had a hard time in school as the issue wasn’t recognised by the teachers. Because I was good at some things and very bad at others, it was clear to them that i was just pig-headed and didn’t try in certain lessons, so I was subjected to, what i would characterise as abusive comments. Given detention for not trying in englsih lessons, being singled out in class to humiliate me… the list goes on….....  and all these years later I’M NOT F**KING BITTER!!!

The whole schooling process is set up for the majority who perform ‘normally’ in an academic environment. The systems goal is to churn out as many exam passes as possible for as little as possible. The consequence of this is that those who do not ‘fit’ the standard academic model are left to fail as they require more resources to achieve. For example, not everyone is going to become great at english, but they may be really good at woodwork or car mechanics or….. the problem comes because these practical subjects are more expensive to run and therefore the school drops them.

I was lucky that i was moved to a school which understood the issue and I was (mostly) able to make up the early set backs.  I now have a degree in engineering (which i just about scraped through!) and I am a self employed engineering consultant.  I have basically organised my life and my technical specialty to avoid having to do the things which my dyslexia makes very difficult, and when I do bump into these issues, I still have problems associated with the treatment I received during my early schooling, but for the most part my ‘problem’ doesn’t cause me much concern.

As a ‘funny’ example of a coping mechanism, I call everyone dude! I cannot remember names (or birthdays but thats another story) which is a bit of a social problem. Having spent some time in canada skiing (ahh whistler) I picked up on the word ‘dude’. People do find it a little odd that a professional engineer calls people dude but dealing with that is easier than getting their names wrong.

And down to the points I want to make (Finally!)

It is great that you are really helping the little fella. It is important that he is able to make the best of what he has. This will enable him to cope with the difficulties and to be able to develop work-arounds which he can use to avoid the really problematic stuff.

It is important that his teachers understand the implications of difficulties. Having teachers using your disability as a means of humiliating you is not good for the self-esteem.

It is very important that he knows you love him regardless. - everyone has their own little issues, yes, some peoples issues are less problematic than others, but for the most part, it is more a case that they are better able to hide thier issues. (It took me a long time to figure that one out!)

If there are some things he is good at and he enjoys, encourage him, but i suggest do not go over-board on single issues. I was always good at maths so for a while i was given loads of maths stuff to do, to the point where it was becoming a chore.

If he is better at practical stuff, check on what facilities the school has. Same with art or more practical science courses. If he isn’t going to fit the ‘standard academic model’ it is not his ‘fault’, it is the rigid system which is not able to cope with the fact that we are not all the same.

I don’t know if any of that makes sense (did i mention I’m dyslexic?!!!) and I really do not know if it applies or is ‘teaching you to suck eggs’ but anyway, I hope it helps.

Ski.

erasmusinfinity—no, we don’t really have a diagnosis.  He has Generalized Anxiety Disorder, but that is only one piece of the puzzle.  He has visual processing issues with tracking, teaming, etc. (can’t catch a ball because he can’t really track an object as it moves through space, etc.).  Although he has an impressive vocabulary and can read very well, he often reverts to grunting or other noises to get people’s attention and his social skills are not great.

Ski—Thank you for sharing your personal story.  I agree that school these days (exacerbated by No Child Left Behind) focuses far too much on standardized testing and not enough on fostering a love of learning.  For my son, we’ll probably eventually need to get some sort of assessment done to allow him more time for tests, etc.  As far as dyslexia, I’m wondering if you were ever guided to do OT or any other interventions and how you felt about the intervention community.  I just hope my son doesn’t feel when he grows up like we were trying to “fix” him.  We always phrase it as “helping” him feel better or making life “easier” for him, but I’m wondering if all these “treatments” are making him feel more different than the other kids and less self-confident in his own abilities.  And, of course, I’m wondering if any of these “treatments” are actually having an effect.

Vanessa

vanessa - 20 January 2008 09:12 PM

Ski—Thank you for sharing your personal story.  I agree that school these days (exacerbated by No Child Left Behind) focuses far too much on standardized testing and not enough on fostering a love of learning.  For my son, we’ll probably eventually need to get some sort of assessment done to allow him more time for tests, etc.  As far as dyslexia, I’m wondering if you were ever guided to do OT or any other interventions and how you felt about the intervention community.  I just hope my son doesn’t feel when he grows up like we were trying to “fix” him.  We always phrase it as “helping” him feel better or making life “easier” for him, but I’m wondering if all these “treatments” are making him feel more different than the other kids and less self-confident in his own abilities.  And, of course, I’m wondering if any of these “treatments” are actually having an effect.

Vanessa

Vanessa,

I am a believer in taking every opportunity to learn. If my story helps, great.

Reference my bold above - I faced both sides of this.

I had a ‘near miss’ with intervention when i was very small as I didn’t start talking till i was nearly two. Fortunately, i started talking before I actually needed to go and see whatever medical type person deals with such things.  When I was 5ish, i did recieve some extra schooling as I was somewhat behind the other kids my age.

later in my schooling i had different issues related to being dyslexic. This is going to make me sound like a bit of an arrse, but oh well!  I was very good at certain subjects, namely maths and science- basically I was in the top three in my year. I had always loved learning about the world and loved building things (in lego!) or taking everything to pieces (bikes, video players, clocks .....) to see how they work, which is great.

On the other side, english, history and in particular foreign languages, no matter how hard I worked, I could, at best only get a moderate grade. for example, I cannot remember names, So learning by rote what the french words for fruit (or whatever) is basically setting me up for failure. It is the same with learning dates. History tests of the form, “when did ‘x’ happen?” were likewise simply setting me up for failure.

As I could achieve in one subject and then do so badly in another, if it is not understood why, would easily lead an ignorant teacher to assume i was simply difficult. I strongly suspect my parents attempts to get the school to help me didn’t help, other than to wind the teachers up. there were sure that i was simply difficult and were no going to listen to anyone who tried to tell them otherwise. so, they took thier frustrations out on me.

I had three assessments during my schooling, one my parents arranged outside the school system, which the school ignored, one within the ‘problem’ school, which was performed by someone who didn’t believe in dyslexia (so no help there) and a subsequent assessment in a different school which confirmed that i was dyslexic and therefore entitled to extra time in exams and a computer to use while at university (payed for by the local education authority).

So, there was ‘help’ which acknowledged that the ‘normal’ system is effectivly biased against me. Knowing that i wasn’t the only kid who had the same issues certainly helps from a self esteem point of view. also, having a broad enough educaton that i am able to find the subjects and career that I am best suited to helps in the long term for obvious reasons.

I would say that anything which separates the child from what he considers to be ‘normal’ schooling may make him feel uneasy. I suggest that meeting others with similar issues would help him to see that there are many forms of normal.  for example, I consider dyslexia to be normal, its just the dyslexic brain works slightly differntly to most others.  I guess it helps that dyslexia does have advantages. My spatial awarness is very good, which is a big advantage when using Computer Aided Design systems and I can also see evolutionary advantages to having good spatial awareness.

Having said that, I have also heard the suggestion that dyslexia is an autism spectrum disorder, which does actually make some sense to me, but that is another story!

My advice would be;

try to keep his schooling as ‘normal’ as possible, even if it is dfficult. Sometimes life is difficult, and he will be better able to learn to cope at school than if he has to face his difficulties when he first gets a job.

Ensure his teachers understand what the issue is and what the effects will be.

Help him to understand that he is not alone in having the problems he has.

I hope that makes some sense and is helpful in some way!

Ski.

SkiCarver - 21 January 2008 04:23 AM

My advice would be;

try to keep his schooling as ‘normal’ as possible, even if it is dfficult.

This probably depends on the degree or the type of the mental illness. My uncle and aunt insisted that my cousin, who suffers from some kind of a mental disorder (she was never diagnosed with a specific type of illness), attended regular school. It was difficult for her and extremely frustrating for everybody around her. She seemed to do much better once transferred to a school for kids with special needs. My uncle and my aunt refused to “give up” but eventually realized that competing with other kids who were not like her, was not of a great advantage to her. As much as we might pretend this is not the case, the primer concern of children in school is not to learn how to read and write, but to form friendships and learn how to interact with each other.

I have spent the majority of my professional career in some form of Special Education.  I was an elementary school Speech Pathologist and then a tutor/remediator of learning disabled adults.  I have seen the importance of early intervention.  It can make the difference in a child’s life to have the “problem” identified and then remediated.  To your credit, Vanessa, you are very involved and concerned about your son’s issues.  Really, to be this aware and desirous of assistance is the best thing.  I would say that school-based aid (OT, PT, therapy, whatever) is useful.  And plenty of reinforcement at home!

The adults I worked with often had harsh early educational experiences.  Those days were more difficult for special needs children.  It is different now.  The “regular ed” kids don’t hold it against the “special ed” kids.  They just go to some different classes.  It’s no big deal.

So, early intervention is good, I believe.  And, as Ski and Occam have reminded us, people change and adapt as they mature.  The LD adults I taught are now teachers, doctors, accountants, lawyers, and artists.  One was even a professional football player for a while.

Vanessa,

Your son’s situation sounds very similar to my daughter’s.  We discovered this when she was very young also.  We had her work with a therapist for a couple of years.  She spent time trying to throw a ball into a hoop, reading with the therapist along with other exercises that were intended to assist her in her development.  I’m not 100% sure these things really helped.

She is 16 now.  We still have issues with her “learning disabilities”.  They materialize in many ways.  She is generally disorganized, forgetful and has some difficulty handling responsibilities.  Reading a clock, identifying street corners, understanding directions are all still difficult for her.

While these issues may seem tragic to some, I can assure you that she is of above average intelligence.  She can carry on deep philosophical discussions with adults that shock and amaze many people with her maturity and understanding of difficult intellectual issues.  It’s the more subtle, even trivial stuff that we all take for granted, that she overlooks. 

The most important advice I can give you is to stay involved with the teachers and administrators at your school.  Don’t let them give up on your child.  Ensure that they give your child support, and understanding.  Your son may require more time to grasp a concept, different teaching techniques, more time to take tests.  But in the end, they can prevail. 

I would urge you to view this video. The message is important to all of us.  We tend to look at kids who look at the world differently as “disabled” or as having “special needs”.  Instead we should be identifying their strengths and working with them to reach their potential.

My daughter is a fabulous writer of poetry and “stories”, she is musical, artistic (painting, drawing, fashion design), and has shown some acting ability.  The arts in particular are not favored in schools today.  This is a real shame.  Perhaps your son is just really looking for the right outlet to realize his potential.

HappyHumanist - 21 January 2008 10:43 AM

I have seen the importance of early intervention.  It can make the difference in a child’s life to have the “problem” identified and then remediated.  I would say that school-based aid (OT, PT, therapy, whatever) is useful.  And plenty of reinforcement at home!

Thanks everyone for all the thoughtful responses.  I know these issues are more widespread than it seems—especially those who are somewhat “different” but not diagnosable.  I’m wondering, HappyHumanist, about the importance and usefulness of early intervention.  I suppose if you have a specific “problem” that can be readily identified and if there is a specific therapy designed for that particular issue, then early intervention is a good idea.  But I often feel like we’re taking stabs in the dark and we’re not sure if any of them work.  Especially because the OT and other specialists often can’t explain to us the medical reasons why their particular therapy works.  In fact, one OT provider we had stated very frankly to us that they way they know the therapy works is that the parents say things at home have improved.  Well, basic brain development and maturity can often “fix” some issues and parental response behaviors can often fix other things.  (And of course the child themselves can begin to learn “workarounds” to their issues.)  You seem very positive (which is great) about the effectiveness of school-based aid (which we don’t qualify for because his IQ is too high), but I’m wondering if that’s based on clinical research results or more on anecdotal evidence? 

Vanessa

Vanessa, it has little or nothing to do with IQ.  If your being told your son does not qualify due to any type of IQ test then there is something wrong. 

Since your subject to no child left behind, as my child is, then you know the issues we have with testing that is intended to measure achievement across all types of children regardless of their learning differences.  The one size fits all measurement process is failing a lot of kids. 

Some schools and administrations are better at dealing with this than others.  Up until High school I was fortunate enough to be working with schools that had great programs that were capable of adapting to my child’s needs.  Her 1st year of High School was a disaster.  They were either unwilling or unable to adjust.  To make matters worse, they grouped her with a collection of students that had clearly given up on getting an education.  In spite of our numerous attempts to resolve the issue they did nothing.

She is a sophomore now and attending a charter school that has some very progressive teaching methods.  It has helped a great deal.

Although I can’t be certain we are dealing with the same type of issues, I can tell you that kids who struggle in such ways, but are only marginally different than average kids in terms of what a teacher or administrator can pick up on, without proper diagnosis, are often neglected.  This is exacerbated in our case due to the fact that my kid is of above average intelligence.  Many educators have difficulty understanding the issues and tend to blame the problems on laziness, carelessness, or lack of concern.  I know different because I have witnessed how much my daughter cares about getting a good education.

One of the therapists did mention something about developing brain structures at different rates.  However, I got the impression as others have mentioned here that the treatments, therapy, etc. was still very much in the experimental phases.  I would be careful with experimenting too much with therapy or treatments.  We were very aggressive with this early in her life.  If I had it to do over, I would do far less of the therapy and more work with educators to find ways of accommodating her needs without alienating her from the mainstream kids. The psychological impact of feeling as though they are impaired in some way, especially if other kids catch on and tease, is far more devastating than the issues themselves. 

Truth be told, I think my daughter has many advantages over some of her peers.  Many take their “normalcy” for granted and do not work very hard to reach their potential.  My daughter knows she has to work harder than others, and puts far more effort into her education than most.

Vanessa 21 January 2008:
You seem very positive (which is great) about the effectiveness of school-based aid (which we don’t qualify for because his IQ is too high), but I’m wondering if that’s based on clinical research results or more on anecdotal evidence?

I concur with Charles: IQ matters not. Some disabilities are physical, not mental.  And, anyway, most people with learning disabilities have higher than average IQs.  Your school district should be testing and remediating your son’s problems free of charge to you.  If not, there are avenues open to you for redress.

Clinical results? I have been out of the field for a looooong time!  But we always kept track of student progress via the tests we administered.  If I had spent a year working on problem A with a child, at the end of the year, I would expect to see progress above normal maturation.  I almost always did (as a Speech Pathologist).  Your Occ. Therapist should be able to show you similar records for other children.  I understand your skepticism and commend it.  But I have seen progress because of intervention.  One anecdote: My step-niece was not walking as she approached her 2nd birthday.  A few months of PT and she is now walking normally.  Would she have eventually started walking?  I don’t know.  But a two year old should be walking, unless there are serious problems.  And she is.