Wednesday, December 4, 2013


If there is one thing and one thing only that I hope all people take away from this post, especially families living with disabilities, please get documentation and copies of documents that are being disseminated, published, and shared about your child.  This includes case managers, service facilitators, insurance documents, doctor's notes, etc.

Unfortunately, some people will write incorrect information about your case. While we are completely self absorbed in our own lives, we have to remember that humans make mistakes and document life incorrectly at times.  I have no doubt that government case managers are over worked and underpaid, but this does not excuse the mistake.  As a parent you MUST ask for the documents that are being written about your family members.  It's your job to be their advocate and protect them.

Case managers have dozens of cases and I have no doubt that dealing with so many people and their issues can get quite confusing.

Most recently, a case worker, who is supposed to be an advocate for my daughter, wrote a grossly inaccurate account of her behavior.  I was shocked and left unbelieving what I read.  When I asked the case worker about the inaccurate sentences in my daughter's file, she quickly blamed it on the last case worker. Now, please know this, this case manager came to my home simply one time for at most one hour.  The case worker who she blamed the mistake on, had also only come to our home one time for an hour.

I had repeatedly asked for the copies of documents from the first case manager and then from the second.  I was forced to be persistent and firmly assertive.  I do recognize they have challenging jobs, but I have a challenging life to protect my daughters rights and her story from people who see her as a case number not a person.

So, I end this post begging you to get copies of all documents (and read them) and be an advocate.  Sometimes we assume too much that people are doing their jobs; however, everyone needs to be in charge and advocate for themselves and their loved ones.

Wednesday, November 27, 2013

Being Grateful for Her Friends.

"Goodbye Sadie, I love you!" yelled Albert as I was walking away with her to go home Monday afternoon from school.  I looked back in awe, to see Albert smiling toward us and waving so sweetly and genuinely.  It's unconditional, innocent and the true sign of emotion and friendship between two children with disabilities.

This is Sadie's third year in the same intellectual disability self-contained classroom, which she has shared with several of the same students all three years.  Albert is one of several students who genuinely cares and looks out for Sadie.

Back in October, I attended a farm field trip with the class and saw the friendship between Sadie and her classmates.  Another student also calls after Sadie throughout the trip and smiles and wheels himself up next to her legs to reach out for her like children do with each other.  I feel that tingling surge of emotion to know that she DOES have children that really care about her.

Children's Museum
Last week, I attended another field trip to the Children's Museum and the same children called after her and reached out to touch her and interact and to just simply be her friend.  Even another child with a disability from another class walked up and leaned over and kissed her on the cheek, I dare say this might have been her first kiss, but I'm certain these kids love her and show her affection often.  Toward the end of the trip Sadie accidentally got bumped in the head, and one of her classmates asked over and over, "Is Sadie going to be alright," as she watched with genuine concern while Sadie was crying.

All of these emotions and special moments together really got me thinking about how close children are with each other while they are in a special education class.   They spend all day with each other year after year and form close attachments and bonds with each other.  They are friends. Is it no wonder that when they transition to Middle school that many struggle leaving their elementary school, teachers, and friends behind.

We are busy being parents, teachers, and adults, do we realized these children's lives are completely changing... they lose friends, navigate new buildings, new environments, new teachers and assistant teachers.  Change is hard for those of us who are "typically developing," is it any wonder children with disabilities might struggle with the change of losing a friend, and place they called home away from home for 5+ years.

Sadie won't go to middle school for at least three more years and I'm so grateful for the children she is surrounded with in her class today.  It's the most thankful feeling to know your child has friends.

Monday, July 22, 2013


Smile ... It's universal.

Tuesday, April 2, 2013

Update cardiology

Good news... Cardiologists did agree that her aortic side is dilated, but think there's no need to close the hole in her ASD at this time. And we should follow up in 2 years for a reevaluation.