Monday, October 15, 2012

As if...

(Due to the sensitive nature of the topic, I ask you to be kind with your responses.)

Anyway, as if Xander hasn't had enough to deal with in his life (a whole three years) we now have another hurdle.

Well.. actually that isn't true.  We've had the hurdles but now we have some names for them.

Xander has always been quirky.  Honestly, sometimes we forget how quirky because he is just our Xander.  But as he has gotten older, it became apparent that his quirks are interrupting other parts of his life and causing issues.

For instance, his issues changing activities is greatly affecting other parts of his life.  Changing his routine is devastating to him. 

Other quirks have worked in his favor.  For instance, Xander has the most incredible ability to memorize things set to music.  Anything.  He has picked up states and capitals just from hearing a song we use for the girls.  So if I want to teach him anything, setting it to music is the way to go.

I've always noticed differences between him and his siblings, but I've been brushed off for a long time.

"That is just a boy for ya!"
 
"That is boy energy..."
 
"Girls are just different... "
 
"That is just his personality, not anything physical
 
"Have you tried ___________ method of discipline?"

And still my mommy gut nagged at me during the quiet moments in the night. 

I thought maybe *I* was the one that had the issue.  Maybe I wasn't cut out to be a boy mama.  Maybe I just lack patience.  Maybe I am too uptight... sigh.

So when my typically laid back family practitioner mentioned that we may want to have some tests run on Xander, we took notice.  Our doctor has 6 children and majority of them are boys.  Maybe this just wasn't "boy-ness." 

Off we went to a pediatric neuro-psychologist and she watched him meltdown in the waiting room. She noticed how he flitted around the room with no focus.  She noticed how darn short his attention span is. 

After the initial intake appointment, we went ahead with testing.   We ended up starting medication shortly after testing with our family practitioner since the appointment with the psychiatrist was months away.  We have seen some improvement.   

I'm wasn't surprised with the results at all.  Our three year old has been diagnosed with ADHD and PDD-NOS.  The neuropsych is sending us to an autism spectrum specialist because she is hesitant to diagnose him with autism or Asperger's Syndrome at his age since that is not her specialty.   He does have a high amount of behavioral markers though. 

PDD-NOS is on the autism spectrum though.  Xander's attention span is about 15-20 seconds-- if you can catch his attention at all. 

So where do we go from here?

Well, now we go back to the Early Intervention meeting with the school system with a diagnosis and a formal testing results.  

We go to the pediatric psychiatrist to have his medications tweaked a bit.  Because stimulant use is not approved for children under 4, there are not as many options available for him.  Besides, stimulants can affect appetite and after all the work we have done to get him back on the growth chart, we are very cautious about this particular side effect. 

We have tried diet changes (avoiding red dye 40, gluten, etc) and we have not seen any further improvements. 

How can you help?

This is going to be a long road and we covet your prayers for us.  Pray that we don't lose sight of our little boy in this.  He is still the same little boy that he was before we had a diagnosis.  Pray for those we encounter as we walk this road.  Pray for us as we try to piece together a medical team for Xander.  Pray for our family as we complete these appointments.  Appointments obviously change our routine and cause a ripple effect throughout our day.  Pray for mercy and grace for each member of our family.  Pray for our insurance company to be cooperative and helpful and if they aren't, pray I don't have a flesh flash.  ;) 

~Stephanie

3 comments:

Our Adoption Journey to Eastern Europe said...

Stephanie, ((HUGS)), I will be praying!

I really wonder what surprises we have in store for us when we bring our son home...This may be one of them, I do not know. I do know that this does not change one bit how you feel about Xander. He is still the sweet little boy you know and love!

Erika said...

Aw Steph, I am so sorry about all of this. Poor Xander and poor you!! I am so happy yall have caught it early, though. Early intervention can make SUCH a difference...I see it first-hand for myself every day in my job. Again-- God knew exactly what he was doing when he put Xander in your family. You are the absolute perfect one to advocate and fight for your child. Prayers for fruitful appointments and meetings and results!

Danielle said...

Still thinking of you and your family, Stephanie. God has a good and perfect plan for you and your sweet kids, and this is part of it. I will keep you in my thoughts and prayers as you work thru this latest challenge. God bless you all.