Getting used to being a joiner...

I have never thought of myself as much of a "joiner".  Perhaps I have some of my son's social skills struggles because from an early age I have found the whole "group" setting difficult to manage.  I always feel like I don't quite fit in, or I worry that I'm speaking out of turn or speaking too much or that I won't get that sense of "belonging" that everyone else feels.   I visualize myself as that character on the reality shows that everyone ostracizes or who just doesn't mesh with the group.   In practice this probably isn't the case but that feeling scares me so much it keeps me from joining.  The rebellious, underdog part of me probably doesn't want to feel like I'm drinking the same juice as everyone else and probably derives some pleasure from feeling "a little different".  

Ultimately it's not always healthy to be on the outside.  As a matter of fact it can be quite lonely.  Recently I've been reminded of how important it is to have a setting or group where you can share your experiences can be very rewarding.  I am currently participating in CHADDs online Parent to Parent Classes -  we are on week 2.   After the first webinar (an online lecture forum where everyone can participate) there was clearly so much in common between participants and the need to share resources, experiences and get things "off their chest"  was palpable.   The distance a webinar creates (vs. a face to face class) perhaps makes it easier to share more freely.  Although I have not participated in my local CHADD meetings, this joining at a distance feels right for me.

For parents struggling with their children who have ADHD or a comorbid disorder I highly recommend the CHADD parent to parent classes.  So far it has been an excellent experience and I get the sense that the 20 parents I am sharing this experience with will be in touch for a long time!  Two thumbs up for CHADD's parent to parent classes.

Are labels useful or harmful?

Okay.  Please watch the following with a grain of salt.  I did think long and hard before reposting this video because I do not support the group that made it or their particular message, however, that being said I do like this video clip because it does (unintentionally I'm sure) advocate for a strength based view of these disorders.   By that I mean it does a good job of delivering the message that many of these psychiatric "labels" also have their positives.  I do not condone the anti-psychiatry, anti-medication message.  Many of these labels also help to define a "problem" and then better address it - either through medications or other means.  I mostly reposted it because I do love the idea of focusing on strengths, rather than the labels.

http://www.youtube.com/watch?v=Wv49RFo1ckQ&feature=player_embedded

Making it fun is worth it!

Over the last hour I've been reviewing several blog posts about how ADHD children are handled at school.  Mostly the specific issue about delivering negative consequences for what most would consider *expected* behaviors such as organizational challenges (forgetting to bring home homework) and then specifically punishing by taking away recess which is so necessary for their brains to function.  Then I logged onto facebook and saw a great video clip that seems to be slightly viral that shows that you can change behavior by making things FUN!  what an awesome thought.  By making a staircase into a piano the winners of this competition were able to get 66% of people to take the stairs rather than the escalator.   I wish this whole idea could be incorporated into education for kids with ADHD, I have no doubt if school were FUN it would be much more likely to motivate than negative consequences....

check out the fun theory at: http://www.thefuntheory.com/

here is an article about taking away recess for kids with ADHD
http://add.about.com/od/schoolissues/f/The-Importance-Of-Recess-For-Children-With-Adhd.htm

Medication power struggles

Some days it feels like every relationship is a power struggle.  If I'm not engaged in a struggle for control/power with my child then it's his teacher or school.  Every year without fail we seem to engage in a power struggle with our son's teachers about his medications.  Of all people I understand that my child is VERY hyperactive and he is "easier to handle" while on stimulants.  However, I still like (actually love) my child without his medications and prefer his temperament and personality off his stimulant medication.  Sometimes I do wonder if the only goal of medicating is so he can be "handled" in a school setting.  Like any busy family there is the rare occasion he goes off to school and we forget to give him his medication.  As of this writing, this has only happened twice this year and yesterday was the second time.  Clearly I know he didn't take it because I am the one who gets him off to school everyday.  Without fail, at 8:30 am there was a message from his school asking that I bring his medication to school (20 minutes away mind you) because they couldn't "handle" him.  I am at work seeing patients at this point and it is clearly not feasible for this to happen.  When I return the call to say this the teacher is clearly ticked off, and when my son gets home in the afternoon he reports to me that she said to him directly, "I can't handle you today".

As a physician I am very aware of the positive aspects of medications, but at times I feel like the question of whether to medicate or not medicate for ADHD is somewhat trivialized and is much more difficult than it seems.   When our son first took medications in 1st grade his psychiatrist used the analogy of a diabetic who can't get by without insulin.  I personally have never bought into this analogy....my son is not going to die of ADHD where a diabetic will most certainly become quite sick without insulin.   Also, the side effects of stimulant medication can often worsen the behavioral problems when the child is coming off the medication at the end of the day and in our experience clearly make him irritable.

Is it really that simple?  Does a child with ADHD need medication the way a diabetic needs insulin?  Over the years we've come to acknowledge that until our son develops maturity and some executive function skills to regulate his own behavior and it's impact on himself in others in group settings that the medication serves as a substitute.  I am still hopeful that with time he will develop a skillset that will allow him to function without medication.  Wishful thinking?  maybe.

Managing new settings -" I'm a little burnt out"

"I am a little burnt out"... was the last thing my son's snowboard instructor said to me after we spent the last 3 days skiing/snowboarding.   My husband and I are lucky enough to be involved in the medical staffing for the Dew Tour (an extreme sports competition) and had the opportunity to spend several days in Killington, VT with our son.  This is an amazing opportunity for our son but every year I hesitate about making the trip with him.  We need to negotiate work and play which is always a difficult balance with Kaya. As always he initially resisted taking lessons because he has had enough feedback at this point to know that he doesn't do well in group settings.  If it were up to him we would do all day private lessons, however, this is pretty cost prohibitive. 

So after the usual negotiations and reassurances that he would likely be on of the only kids taking group lessons in the middle of the week on a non-school vacation week we dropped him off at ski school.  I am sure those of you with a child with learning differences/ADHD/autism can relate to the difficulty of explaining to yet another person who is "new" to your child what to expect.  On the outside and in his best moments he seems like every other 9 year old boy so when you launch into your 30 minute preamble about what to expect and that you'll have your cell phone on you should there be any issues, the "new" person always gives you that look like you are the most overbearing/neurotic parent on earth.  I can't tell you how many times I've heard, "don't worry, I've had plenty of kids like him".   Every time, I wonder "should I have even brought it up?, I'm sure it will be fine", but without fail I come to pick him up and they say "he seemed worried" or "do you know he talks ALOT" and then I remember, oh yeah, I DO know my child.  I have to resist saying, "remember those 30 minutes when you were thinking - wow this mom is overbearing - well that was me telling you!" 

Although, at the end or our really pretty good ski/snowboard trip I have to say "kudos" to both Kaya and his instructor for making it 3 full days together.  I feel a little guilty that it makes me feel a little better to know that Kaya exhausted someone new after only 3 days, because I spend a lot of my time exhausted and I find it hard to explain and I feel like I must be missing something.  It just reminds me that it is tiring to care for somehow who is "always on the go"....
If you struggle with "explaining" your child every time you put him in a new setting with a new teacher/supervisor, I have come across the idea of making a "biography" page for you child that covers the basics like likes/dislikes, things you need to know, etc....  

Check out the parentingspecialneeds.org.....http://parentingspecialneeds.org/attachments/19_about_me_forms.pdf

is exercise more important than school?

I am not proud of myself.  Today I chose exercise (for myself) over potentially getting my child to school on time.  In my defense I did abbreviate my exercise routine and there does happen to be some version of an ice storm/rain/snow event going on during the school commute this morning in New England. Also in my defense, the child refused to take the bus this morning because he couldn't find his snowpants and that's how I ended up being school chauffeur.  Needless to say my kid was rather pissed at me.  Like many kids with anxiety and ADHD he is ironically obsessive about being on time despite his inability to be organized enough to be on time.  I myself do not have a diagnosis of ADHD but timeliness has never been my forte either and I 've come to accept this as a constant struggle.   As I obsess over whether my choice was selfish or not I got to thinking about how desperately I need that morning exercise routine to structure and feel in control of my day.    This got me to thinking about the link between physical activity and executive function.  Intuitively I have no doubt there is a strong connection.  When my son was initially diagnosed with ADHD he was simultaneously referred to occupational therapy where he was diagnosed with sensory processing disorder.  One of the first prescriptions for his "sensory diet" was daily exercise, preferably before school.  This prompted me to do a quick search of the data regarding exercise in "normal" subjects and exercise in kids with ADHD to see if it improves executive function.  Executive function is defined as the activities that organize the brain:  planning, paying attention and organizing goal directed tasks.   From a brief perusal of the scientific literature it seems the jury is out....there are several studies suggesting that bouts of exercise do improve the ability to pay attention and organize tasks, however, it is not clear if these effects are sustained over time, how much and how often to exercise and whether this is only specific to certain types of people.   That being said I have successfully written this blog post after my bout of exercise and I certainly see a difference in my child after an hour of vigorous exercise, particulary in his mood. So for this family exercise will continue to take a priority.

to read more on exercise and the brain:
http://www.usatoday.com/news/health/2007-10-29-exercise-brains_N.htm

description of executive function on CHADD website:
http://www.help4adhd.org/faq.cfm?fid=40&varLang=en

Use your powers for good

As I head downstairs at 7am I can hear my son rustling around in the kitchen, however, from the noise coming from the kitchen I'm pretty sure he's not walking.  As I round the bend at the bottom of the stairs I see him on rollerblades, shirtless, spraying febreze all over the kitchen. When I try to piece together the thought process that ultimately led to this activity I realize that I will never figure it out because his mind works at a different speed and occasionally in a different reality than mine.  Every morning I have to remind him that it's going to take a few minutes for me to catch up to where he is in the half hour he's been up before me.  I know there are many parents out there that can relate to this scene.  My son is 9 years old and was diagnosed with the alphabet soup of  ADHD, generalized anxiety and sensory processing disorder several years ago, however, to us he has always been just who he is...and we love him that way.   Has he faced numerous challenges in the last 9 years....certainly!  Do we struggle with him as parents because he is a "little more" than most kids....certainly!  Is our mission to navigate life beside him trying to bring out his best qualities and strengthen or work around the areas where he struggles...definitely!  This blog will highlight some of the areas where we've struggled and succeeded as well as some of our failures and some of the resources and tools we've discovered along the way that have helped us all be the best that we can be....our own superme!  I know many people out there struggle with similar difficulties trying to showcase their strengths and overcome their struggles with some pretty basic activities of daily living...eating, sleeping, organizing, making and keeping friends and I hope we can share strategies and tools that will help all of us be our best and find our superpowers!