Wednesday, May 29, 2013

a new normal

With Ben's first seizure we were introduced to a new world.  We learned new things about seizure types, treatment options, medications, risks, side effects, diet therapy, and hospital stays.

But there is more to Doose Syndrome than just seizures. 

We've noticed some delays - some struggles that haven't gone away on their own.  Back in February, we visited a neuropsychologist for an evaluation.  We have submitted those results to our school, completed a few more evaluations, and we just had Ben's ARD last week.  I am so privileged to know this group of educators on a personal as well as professional level, so the meeting went very well. 

It seems like we have been introduced to another new world.  This time we are learning new things about learning disabilities, occupational therapy, and behavior management. 

Leeon and I have been to many ARD meetings as teachers, but it is different to sit on the parent side of the table.  It can be very intimidating and difficult to hear results and prognoses.  It was hard to hear that therapy may not "cure" a particular issue but rather "compensation skills" were the desired outcome. 

But what I know is that my son is more than a number. 
He can do hard things.
He can overcome obstacles.

And he will.

Thankfully, we are getting intervention early, everyday he is making gains, and the delays are in a few specific areas.  He will receive support services next year in all academic areas as well as speech and occupational therapies.  With this added support, I know he will continue to grow and develop.  I also know that we aren't finished weaning meds yet.  We may see another time of HUGE gain when we get another medicine out of his system. 

This post is mostly for the other Doose moms...I know when we first were diagnosed, I was desperate to find any information that I could.  I wanted to see down the road a few years as I wondered what this diagnosis really meant for Ben.  I hesitate to share a lot of details here in cyber-space.  After all, this is HIS story.  {It's interesting how accommodating we tend to be towards health issues, but there is still so much stigma attached to learning disabilities, physical handicaps, and emotional and relational issues - but that's another post altogether.}  I want people to see him for who he is, not for his limitations.  That being said, if you'd like to know more about the special ed process, the testing we've had done, and specific results, please email me so that we can have a private conversation. 

We ask for your continued prayer support.  Please pray that we will have the wisdom to understand the balance of pushing him to reach new limits and yet communicating to him that his best is enough.  We need understanding as we adjust our expectations.  This is not the road we envisioned for him.

We are so thankful that...
God has a plan.
A beautiful future is in store for Ben.
Although this is new territory for us, none of it has surprised his Creator.
God has promised to give us the grace needed to get through this challenge, just as He has seen us through the physical aspects of Doose.



  1. I have been thinking about you guys, and wondering how Ben is doing. You have my love and prayers.


  2. Laurie -- I just caught up on all of this... I still check your old blog all the time as I had forgotten about this one and I'm so happy you put a comment on my blog so I could see Ben's progress. I can't stop crying with relief, pain, happiness, and every other emotion as I read everything you have been through since starting the diet. You are an amazing person and mother, I hope you realize and know that, the way you accommodated his diet and stuck it out and tried different treats for him and DIDN'T GIVE UP -- Wow, I am impressed. So glad he is off the diet and seizure free. God is awesome -- and Ben is so blessed that God chose you and Leeon to be his parents. Love you guys so much.