SibShops

After participating in my state's Partners in Policymaking program 2010-2011, I learned that another PIP graduate brought SibShops to my area for her end of the year project.

"Sibshops are best described as opportunities for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context. They reflect an agency's commitment to the well-being of the family member most likely to have the longest-lasting relationship with the person with special needs."

~ http://www.siblingsupport.org/sibshops/frequently-asked-questions-about-sibshops.pdf

At that time in 2011, Sadie was nearly 6 and her younger sister was nearly 3; therefore, she would have to wait at least three years to attend a meeting.

Shelbi was able to attend her first meeting this past November.  Happily, she instantly connected with the people running the meeting and also the other children in her group.  She enjoyed the meeting so much that she was excited to attend the next one.  However, due to scheduling, she couldn't attend the next meeting until yesterday.

At the meeting yesterday, she was so excited to be there, so much so that she actually didn't want me to stay with her for the meeting.

When I arrived back two hours later to pick her up, she was modeling playdoh and chatting with another sibling. This also gave me the opportunity to drive around and explore the area, stop at a few shops and grab a coffee.  We both benefited from the morning.

I'm so thankful for programs in our area to support the lives and health of siblings of people with developmental/intellectual disabilities. 

Virtual Waterway on the floor with puddling water sounds too

documents

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.

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.

Beach Life

Sadie loves hanging out and playing with water.

Smile

Smile ... It's universal.

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.

Spicing up life

Thanks Sadie... I just said this morning that I needed to put a lock on that cabinet!