A Dip in the Tracks

 

I was quickly scrolling through the many photos on my card reader (that I have NO room for on my hard drive) to pull off the few that I wanted for this post and I just couldn't help but to think what a blessed, beautiful life we lead.

It's FAR from perfect.
We are flawed people bumbling our way through life.
And I complain WAY too much about being "too busy" (I'm even sick of hearing myself say it).
But then I look at those photos...all the fun we have, the people we love, and I wouldn't want to change a thing.

That's not the point of this post, but I sort of needed that reminder today.
My heart was a little heavy today so it was nice to pull back and look at the big picture and smile.

I had an appointment with Andrew's psychiatrist this morning.
It was disappointing.
My heart ached when we left.

It's amazing to me how we can walk into that little room, have Andrew sit in his little chair and how easy it is to see how he is doing simply by how he behaves during our 30 minute appointment.  We've had everything from rolling around on the floor with a large stuffed penguin, to sitting quietly and coloring the whole time.  Today he stayed in his chair, but was all over the place (slouching, sideways, legs over the arm of the chair, etc.)  and talked incessantly (about random things) while I was trying to talk to the Dr.  She asked him how school was going and he said, "Hard."  She asked what is hard?  And he said, "Staying still and not calling out."

There's been a slow decline in the coverage with his medicine over the last couple of months.  He's been more active.  Extremely talkative.  The jumping and arm swinging have returned.  I'm hearing more negative self talk which comes when he feels like he can't behave the way he's "supposed to."  And I can tell simply by my frustration level as we are trying to get through simple daily activities.

Tonight as I was going through papers I was amazed to piece this together.  Timed math tests over the last couple of months.  Beginning in mid April:



He was able to write his name, date and do most of the math, his answers are even almost all on the line!

In very early May he did around the same amount, but his handwriting was worsening.  He couldn't manage to write in the space for the date.






I can't read the date anymore to know specifically when this one was, though I know it was the third to come home.  He was able to focus for less time and complete fewer problems.



The most recent one to come home had no date, and his name was down to initials.

This is what breaks my heart.
Seeing what he is capable of but then also seeing how this disorder gets in the way.
As his mom, living with him, I can see this manifest in so many ways.  But this is really a tangible example of what I see.  And it's hard to see your child moving backwards instead of forward when you know it's not representative of what they can do.  His teacher said he's smart enough to be doing double digit addition by now....

And isn't it interesting how we just had this great success with the motor skills with OT and yet, there's this whole other piece that is still a big challenge?  I guess it just speaks to the complexity of the human brain. 

So, the results of our appointment today was concern expressed on the part of the doctor.  She wants to met with Dan and I without Andrew to strategize "management" of this for Andrew...both at school and at home.  She wants to further discuss modifications at school.  We need to find ways to encourage daily exercise.   I am working hard to minimize our commitments outside of our home so that my priority and focus can be working with Andrew to set up routines to help with his ability to complete tasks/responsibilities.  Dan and I need to learn and understand what is manageable/realistic for Andrew so that he can be successful and build his self esteem.  I need to make simple charts for him and get these things established so that they'll be in place for the school year.  And while I realize that sounds simple, executing it with Andrew isn't. 

We are adding on another medication starting tomorrow.  I am saddened that we have to do this. 
I worry about losing the essence of Andrew.
I am NOT crazy about the medicine we are going to be giving him for many reasons.
It feels like we're stuck between two not really great options.

For my praying friends who are invested in this journey with us, please pray for wisdom in our treatment making decisions.   Please pray that we can find a way to help Andrew and yet, keep our sweet boy.  Please pray for safe and effective treatment.

This journey is one of twists and turns, peaks and dips.  The psychiatrist said the next year will be another "big" one for Andrew.  A lot is changing in his little mind right now as he grows and so the way he responds to medicine changes as well.  And we also learn more about how this disorder is manifesting for him.

In my heart, I want to be that mom for Andrew who handles this all with grace.  Who instinctively knows what to do, executes it without complaining with endless patience and strikes the perfect balance of firmness and nurturing.  You know those moms who are featured with kids who overcome obstacles and they say that it's because their parents never allowed them to succumb to what was standing it the way.  They pushed them through it.

The reality is, it's very easy to let my concerns run away from me.  I look at Andrew's precious face in that first photo and I just feel desperation to make life easier for him.  I remember so clearly the first time we were given this diagnosis.  I didn't know what it meant for our day to day life, but I knew I didn't want it for Andrew.  (And there may have been a touch of denial, hence the second and third diagnoses)....And I admit, there are many days/scenarios when it's harder than I thought it would be.  And I might have moments like today when I can't keep the tears from spilling over because I want to fix it so badly.  But I am resolved and determined to do all that I can to work with him so this has a minimal impact on his life. To encourage his own successes.  And that's when I just have to stop and focus on today and the knowns, without worrying about future possibilities.   And also be thankful for our early diagnosis because so much important work can be done now.  These are crucial days for our boy and his development and I plan to make the most of them.

So, we're in another dip where it's hard to see the future.  Things feel uncertain.  There's decisions to make and things to figure out.  But I know we'll climb out of it.  We always do.