About Andrew

(I just want to say that while I wrote this post from my perspective and using "I" alot ~ Dan has been an active and engaged part of all of this ~ I had him read this prior to posting, to make sure that he was okay with it, and also make sure I represented everything accurately.)

This is the third time I've tried to write this post.

I've written it twice before and it just doesn't read as I want it to.
For a few reasons.

I don't want this to sound like its a bigger deal than it is.
Because it really isn't a big deal.  It's simply a new way of seeing/understanding things that have been puzzling and challenging us for a while.
However, this is a topic that I'm growing defensive about.

But it's something I want to write about for a few reasons.

I have already shared this with many close family/friends and it would just be so much easier to update everyone here at once.    Again, this is sounding like a big deal.  In the scope of life, it's not.

However, this has been a real source of challenge for me and Dan and it's very much in the forefront of Andrew's world right now and I'd like it documented for him.  And also share the progress that I'm sure is to come.  There is also a genetic component to this, and so I'd like to be able to recall the details of this time for the future.

I have found that when you share things, you often learn things from others that can help on your journey, and vice versa.  And because this blog is private and I know who is viewing it (and have probably already had this conversation with many of you and wouldn't mind sharing it with the rest) I feel like I can write about this here.

That being said, last week Andrew was diagnosed with having a "Sensory Integration Disorder" (a broad umbrella term for a variety of sensory disorders) and ADHD.  I'm not totally on board yet with the ADHD diagnosis.  I'm not saying I don't agree with it, I'm just suspending my thoughts on that until Andrew does therapy and we see how his behavior changes as a result.  He does exhibit some of the ADHD profile, but there's a lot that I don't agree with as well.  But I could write pages about how he falls into the "Sensory Modulation Disorder" (which can mask as ADHD  as there are many overlapping symptoms), so I'm holding in a "wait and see" pattern right now with the ADHD part.

And if you're anything like I was 3 weeks ago, that doesn't make a lot of sense.

I've been on a quick learning curve.  And all of this contributes as to why I've felt so busy lately ~ I've had appts with Andrew's teacher (who encouraged us to test Andrew), his pediatrician (who is in agreement with the sensory integration disorder diagnosis), and a child psychologist who met with Dan and myself, and also with Andrew.  I've been trying to read and learn as much as possible so that I could identify traits in Andrew that might be of importance to the doctor.   Next Tuesday Andrew will have his Occupational Therapy Evaluation and from there they'll recommend a plan for therapy.

Anyway, it just basically means that the nervous system isn't quite developing correctly and needs a little help.  It can display in a lot if different ways and impact a lot of different systems in the body including coordination, aversion to touch or seeking stimuli, motor planning and execution, and lots of different things.  Andrew falls into the sensory seeking category which from what I understand has to do with the timing (or modulation) of impulses not being quite right so it leaves him seeking the stimulus that his body needs.

Sometimes this is okay and totally not noticeable.  In fact, unless you know what to look for, most of the time Andrew just blends in.  During free play with kids, he does great when he's free to touch and explore.  But when he's put in a position where he has to control that urge it can be challenging.  There have been times when I've had to hold Andrew on my lap at the doctor's office (at the age of 6) and wrap my arms around his arms so that I can help him control his body enough so that I can have a conversation with the doctor. 

You can see a small example of it in this soccer video.  The jumping and arm swinging ~ which he does for most of the game when he isn't running or otherwise engaged in the action.  It's the sort of thing that blended in at the age of 4, but is now notiecable among his peers (though there is a little boy on the other team who imitates Andrew for a moment :) ).



 There are a lot of ways that this displays like this that are pretty harmless (other than being corrected a lot by the coach, etc.) But then there are places and times when this creates a disruption in Andrew's life.  Like when he is trying to learn.

Shopping, doctor appointments, school, sitting at the table for meals, etc. have been and can be very challenging with Andrew.   When Andrew is in a new situation (a new class, etc) or under stress in some way these behaviors peak.  As he adjusts, he does better.  Like everything else, there are good days/bad days, good situations/bad situations.

Because behavior is subjective, Dan and I have been very, very careful about who is diagnosing Andrew as well as the timing of this.  We started this process over a year ago with a pediatric behaviorist ~ got an ADHD diagnosis and just sat on it for a year because I just wanted to see how Andrew would mature.  It became clear after Andrew started school that he was struggling very much just with the physical boundaries of having to sit in class and so upon the recommendation of his Kindergarten teacher (whom we trust) we opened the door again and decided to move forward.  We also feel like the ADHD diagnosis is so overused, we were careful to find someone who we knew would not be quick to hand out that label.

The reason I am feeling defensive about this is because the way that Andrew's SID displays really looks like a behavior issue.  A child that displays with poor muscle coordination, or something like that is easier for people to accept as having a physiological issue.  We have been met with a little bit of a "boys will be boys" attitude at times when sharing this.  And while we have only shared with people who are around Andrew frequently (and close friends who have been in some way on this journey with us) so that they can better understand him and give him a little grace at times.  (But still holding him to the same expectation as always ~ just with some understanding that his best effort may not look like someone else's in this area right now).   It has definitely made me think twice about saying anything.

And this is where I have to stop myself from defending the diagnosis.  Because this is very real to me and Dan and Andrew.  I agree that a lot of these behaviors are typical of boys ~ but there is a question of quantity, and interference with life, etc.  Just like if you're sad it doesn't mean you're depressed, but if you're so sad you can't get dressed in the morning, there's an underlying problem.  Same thing. 

There have been some very challenging and sometimes hurtful times (the way Andrew has at times been perceived and treated as a result ~ which is why we removed him from pre-school last year).  It is very real when we see Andrew's self esteem suffer because he can't help these things and he doesn't know why ~ when other kids can ~ and so he labels himself a "bad kid."  (Another indication of a child with this disorder, by the way).  This has been a long journey for us and we're grateful to finally have the clarity that we need to help Andrew.  As I have researched I have found such relief in the many, many things that were seemingly unrelated but actually connected ~ finally matching up and making sense.

Andrew is a fantastic kid.  He's a bright boy.  And I wouldn't change a hair on his head.  I am incredibly blessed to have this sweet, sweet child as my son.  He brings such joy to my heart every single day. And is such an important part of our family. Despite the challenges he presents to his Kindergarten teacher at times, she said to me, "He's an amazing kid."

I totally agree.
 
And he's the kind of kid that I think you could tell him that every day for the rest of his life and he'd never grow an ego.

We have not told Andrew about the diagnosis ~ there isn't a need to at his age.  We simply told him that we are going to go to a place where they are going to help make it easier for him to sit in school.  He has expressed that as a struggle for himself and so he's happy to feel like he's being helped (instead of just getting into trouble which is the ongoing theme in Andrew's life).   His response was actually, "Are they going to control my mind?"  :)

I feel confident that we have a good support system around Andrew.  There is an OT center here that specializes in Sensory Integration Disorders in children.  It's here.  Andrew's Kindergarten teacher really loves him, knows a lot about sensory issues and is doing a lot of extra things to help him in class.  Though she said with the exception of yesterday, he has had a "GREAT week." 

I invite those of you who love Andrew like we do to find opportunities to encourage him and build him up a little bit.  He's needing it right now.  But I know it's temporary.  I am confident that we'll be able to do a lot with therapy to help make life a little easier to comply with.  He has the heart and the desire, he just needs a little help.