What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Monday, September 1, 2014

Let's Talk Preschool (1)

Oh, the drama!  Before having Ben, I was completely unaware of the process that children with disabilities go through before starting school.  Now I know (and we are only at the very beginning).  

To put it simply ... it's complicated.
The federal government provides Early Intervention (EI) services until a child turns 3.  If a child has a demonstrated need (or diagnosis), the school district becomes responsible for providing therapies and services for the child on his/her third birthday.  In order to determine what services the child should receive, the school district evaluates the child.  For Ben, this involved three separate sessions (one with a speech therapist, one with an occupational therapist and one with a physical therapist).  I also had an interview with a diagnostician, and then filled out a separate evaluation form.  Ben's current EI therapists (OT and PT) and his case manager submitted evaluations as well.

After the evaluations, it is time to determine what services the child will receive.  I do NOT understand all the complexities of IDEA (Individuals with Disabilities Education Act), but basically, it provides for each child to have an IEP (Individualized Education Program).  

This is a formal document that directs educational services including 
  • therapy (what kind, how often, etc) 
  • supports (a one on one aide, modifications to curriculum, etc). 
  • location (in the resource room, in a typical classroom in the special education classroom)
It is intense!

Since Ben turned three in July, we've been trying to figure out what his school year might look like.  Here were some of our driving thoughts/concerns:

(1) Evan and Corrie both went to a small Christian preschool 3 mornings/week when they were three and four years old.  I stay home, and that was just the right amount of time for them to be in the classroom, have fun time with other kids, and still get lots of time with me.  And it's a wonderful school!

(2) The school district provides a 5 day/week special education preschool with a great teacher/student ratio.  Right now, there is one teacher, two aides, and less than five kids.

(3) Ben is predominantly nonverbal.  He has one definite word: UP!  He also knows 200+ signs and is a pretty effective communicator, even without words.  

(4) Ben scored near average on the assessments.  There were some distinct areas of delay (notably, speech) but other areas where he is close to his age in cognition. 

(5) We haven't really started potty training yet.

(6) Research shows that inclusive classrooms (with typical kids and kids with special needs) produce better results for ALL the kids.

(7) Ben, Corrie and Evan would get a kick out of going to school together.

In anticipation of Ben's third birthday, those thoughts have been rocketing around my brain for the past year.  We want to get Ben off to a good start.  What does that look like?
To be continued ...

 Dropping the big kids off on their first day ...

 Putting shoes on with Corrie before she leaves for school.

Friday, August 1, 2014

Rewriting the Story

Three years ago Wednesday, I had a baby boy.  My doctor held him up and announced, “He’s beautiful!  Perfect.”  And I will be forever grateful for her words.

Later, as I waited to hold him, I noticed some sideways glances and head nods among the nursing staff.  And when I finally held my son, I thought, he has Down syndrome.  I waited for someone to say something, to confirm what seemed obvious to me, but no one did.  So I wondered – am I wrong? 

They took him away, and I remember lying in the hospital bed overnight, just wondering.  Praying.  Waiting for my husband’s flight to get in so that he could wonder with me.  I felt fear.  Worry.  And the most protective love I have ever felt in my life. 

Eventually, the hospital pediatrician peeked his head into my room.  “You know about the Down syndrome, right?”

And that was it.  No information.  No local contacts.  Just a casual comment.  My feelings of ignorance and isolation lasted for months.

Fast forward three years.  I stood with two of the other women from our local Down Syndrome Association – an organization that didn’t exist when Ben was born – in the conference room of that hospital.  We were there to do a short presentation for the OB/GYNs who deliver there. 

“We are here to help. 
Here is a pamphlet about how to deliver a Down syndrome diagnosis …
here is an excellent booklet with accurate information about Down syndrome …
here is information about the Early Intervention program …
and here is information about our organization.”

Before any of the doctors arrived, I walked around the conference room and prayed.  I thanked God for the local relationships that exist now for families of children and adults with Down syndrome.  I thanked Him for the opportunity to talk to doctors about how they deliver the news, and I thanked Him for Ben. 

After the doctors heard our spiel, they had good questions about prenatal diagnoses, about the DSA, and they asked us to bring more information for the hospital social workers and staff.  The physicians commended our organization and requested extra packets for their colleagues.

It was surreal to be in that place, to remember the fear and loneliness of those early moments, and to contrast them with the sense of hope and community that I feel now.  Ben is a great kid, an essential element of our family, and the Down syndrome community (local and beyond) has been a gift to me.

I may not be able to change the story of Ben’s birth and my fear, but I hope that what we did on Wednesday will help other new moms and other babies to have a better start.

Look at my 3 year old!  Isn't he something?