The Short Bus

When a woman finds out that she is pregnant, there is almost a primal instinct where they will take themselves on the journey of this unborn child's life in a few minutes.

Where will they go to school?
What will they be when they grow up?
Will they be happy?
and so on.
Hopes and dreams for this child abound,
including having lots of friends
daydreams of the first time you get to introduce them to Mickey Mouse
what kind of clothes that you can dress them up in
watching their expression the first time they feel grass or sand on their feet
thoughts about Christmas, Halloween, and other holidays.

They will take themselves mentally through a progression of infancy, through childhood, high school graduation, college, marriage, grandchildren and success. We all hope and dream for success for our children. Dreaming about picnics and birthdays and family vacations are totally normal. Every parent has aspirations for their child.

When a mother finds out that her child is not going to necessarily fulfill all of the dreams that she has for them, she must come up with new dreams. New hopes, new wishes.

In between insurance, oxygen fiasco's, supply company errors, Medicaid messing up our new number, bills, mountains of laundry (Cole is back in diabetes insipidous mode...he has literally 'marked' every surface in the house, including my king size down comforter, twice), seizures and other stuff...we got incredible news this week.

I am not your average epileptic. Honor student, multiple college degrees, had friends, have held multiple prestigious jobs, I've been the exception to the rule. I have never needed any type of special assistance, especially when it comes to education. I never thought that the day would come where I wanted, hoped and dreamed for the short bus to come to my house.

Most of you know a little about the struggles that we had with our former school district. See here for a brief refresher. They said that Cole did not have a disability, having Dravet Syndrome would not affect his education and that he did not need an Individualized Education Plan. The true Readers Digest version...there is so much more to it. I even have a post in my archives that I never published going on and on about how the decision of one person can affect a child's entire life. Well, Wednesday things came full circle.

Cole had a rough night, which he has every night this last week since the med change and the addition of the barometric pressure issue from the thunderstorms. I knew that we had his eligibility meeting at 11:20. He did not go to sleep until after 1 am, so I just let him continue sleeping and got myself ready. If you wake Cole up, he has more seizures. His brain responds much better to a natural process of waking up. He's been finally waking around 10, but here we were at 10:30 and still no movement. I lightly touched him, etc...nada. Well, long story short, we were late. I ran in there probably looking like death warmed over and the committee assured me that we could have done this on the phone. No way...I want to hear it for myself, in person.

All five committee members (two of which have PhD's the other three Masters) solidly agreed that Cole needs services and a structured IEP. They thoroughly explained that he had a regressive disorder and mentioned all of the things that I was concerned about. No one even took in to consideration how I felt in the old district. He begins school in September! What a moment for me. They were just doing their job, but I sat there doing a victory lap in my head with Chariots of Fire in the background.

We still have to create the IEP, work out nursing, talk about the dog, etc. but what a feat for us as his parents. We want him to have special education. We dream about an IEP. These are the things that we hope for now, in regards to our son. We know that on average, kids with Dravet plateau at about age 5. Cole is not so average, but we're going to give him every chance we can to help him. I can't wait until that first day that I get to put him on the bus...I will be crying, but not the usual "My baby's going to school" tears; they will be tears of joy.