Inspiration

What it Means to Be the Village

I am thrilled to welcome Caroline McGraw of A Wish Come Clear as our first Guest Writer. As the Sister of someone with Special Needs, Caroline truly gets it. She understands why a Village is Home. I’ll be interviewing Caroline about what it’s like to have a Special Needs Sibling and that will be available March 9th so stay tuned! In the meantime, here is what Caroline has to share about the value of a Village for Special Needs Families.

Enjoy!

Sandra

What it Means to Be the Village

Caroline McGraw's Family

Caroline's Family

Though it’s true that my parents are my heroes, and that they’re primarily responsible for my brother Willie’s care, it’s also true that they’ve had support along the way. As a special-needs family, it can be all too easy to focus on feelings of frustration or exclusion. Today, however, I want to share with you the people and places wherein we’ve been accepted. These priceless connections kept us grounded when Willie’s behavioral challenges shook our foundations. These people have celebrated with us at every milestone, every small victory. As such, I’d like to say…

Thank you to the church I grew up in, for welcoming Willie with open arms. You offered flexibility and understanding when he’d speak up during the service, and when he needed to roam the hallways while everyone else was sitting down. Thank you for greeting him, praying for him, and including him in basketball games and potluck dinners. You made us feel like we could show up as we were, without needing to pretend that things were different.

Thank you to our extended family, who have been so patient with us and with Willie’s needs. You let us bring gluten-free foods to every gathering, and for letting Willie eat most of the vegetables on any given appetizer tray. You’ve stayed with him when my parents needed someone to help, and you’ve let him lead the prayers at mealtimes, which means so much to him. You’ve listened to him play the piano and encouraged him to keep learning and growing in what he loves. You’re proud of him, and it shows.

Thank you to my best friends, the ones who wouldn’t let me get away with hiding my family life from the world. As a teenager, I believed that I couldn’t invite you to our house. I was afraid that, if you saw my brother’s out-of-control behavior, you’d be out the door. But you wouldn’t let me get away with it. You encouraged me to host a sleepover. When I conceded, my fears came true: you saw a major outburst from my brother. I felt ashamed, so I told you that you could leave if you wanted to go. Instead, you sat with me, held me and told me you weren’t going anywhere.

Thank you to L’Arche, a remarkable organization wherein people with and without intellectual disabilities share life together. L’Arche taught me to dig for treasure in people, and appreciate the gifts that my brother has to offer the world. It taught me about letting go of my need for control, and the beauty that can be found by staying in the present moment.

Thank you to my husband, Jonathan. When we were engaged and I asked you if you’d be willing to share the responsibility for Willie’s care should the need arise, you agreed without hesitation. You’ve seen Willie at his best and worst, and you’ve treated him with dignity and kindess even when he struck at you, even when you had to help us restrain him. Willie has so much respect for you, and with good reason.

Thank you to my ninety-two-year-old grandmother-in-law, who prays for Willie every day. Each time I see you, you ask how Willie’s doing, and tells me, “Now honey, I don’t always remember his name, but I always do pray for him.”

Today, I challenge you: be a part of another family’s village. Be there for them when they need to talk. Encourage them when they’re feeling low. And most of all, never lose faith in what binds them together.

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Who has been an essential part of your family’s village? Tell me in the comments!

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Caroline McGraw - AWishComeClear.com/blog

Caroline McGraw

Caroline McGraw is a would-be childhood paleontologist turned storyteller, digging for treasure in people with autism & intellectual disabilities (& empowering caregivers to do the same). Her younger brother, Willie, has autism, and she writes about finding meaning in your most challenging relationships at A Wish Come Clear. Her first book, Your Creed of Care: How To Dig For Treasure In People (Without Getting Buried Alive) is a 60+ page guide for caregivers, free to all who elect to receive posts via email at A Wish Come Clear.

For Families and Caregivers – The News You Need This Week (1/25/12)

For previous articles, please click here.

To read comments or to leave a comment, please click on the Comments link in the upper right.

Last week I shared the story of Amelia Rivera and her family’s struggle to get her a kidney transplant. Here are two more articles that share some of what is happening as a result of the outcry from the Special Needs Community.

Amelia Rivera and Medical Morality

Bill Targets Bias in Transplant Decisions

 

Parents now ‘less tolerant of disabled children in same class’

 MORE than one in five people say they would object if a pupil with an intellectual disability or autism was in the same class as their child.

The disturbing statistic marks a growing level of intolerance of these children in the education system.

Just one in 12 said they would object when a similar study was carried out in 2006.

While this story is from Ireland it makes me wonder if the attitude is prevalent world-wide. We see so much in the media these days about tolerance. And we see so much about bullying and abuse. The moral of the story? Keep on working for awareness, acceptance and inclusion. And not because it is forced upon people, but rather because they truly want to.

Which leads me to…

The power of empathy: Peer groups help veterans, police and moms of kids with special needs

The programs, offered by the University of Medicine and Dentistry of New Jersey, are proving that empathy, which arises from walking in the shoes of another, creates a powerful connection and support for those in crisis.

 Special thank you to Doreen Fulton of IEP for Mom and Believe in a Ray of Hope for sharing this article.

Some suggestions for IEP goals when your child is bullied

Wish I had this wonderful list back when Matthew was bullied. Gregory Branch shares some excellent ideas to explore with your IEP Team in this article.

As we all know by now, special needs children are bullied 2 to 3 times more frequently than their typical peers. As I have mentioned in previous articles, one of the first steps that the parent of a special needs child should take is to request an IEP meeting.

Help for fragile X victims

The Murdoch Children’s Research Institute breakthrough could allow newborn screening of the world’s most common cause of inherited developmental disability.

Top Ten Most Ridiculous Comments Heard at an IEP Meeting

This article from Special Needs Advocate Denise Golberg is so important because many parents don’t realized that these statements are not only ridiculous but flat out wrong.

I have also, at times, heard some of the most outrageous statements!!! These ridiculous comments fly in the face of everything the Individuals with Disabilities Education Act (IDEA) stands for. What you will find below are ten of most ridiculous statements that I have heard and why they are so ridiculous.

Tips for helping your child with special education needs with their homework

For all parents helping their children with homework everyday takes time and effort. However, for parents of children with special education needs often this can turn into a long and challenging process. Some key tips to support children with special education needs in completing their homework include:

Tiger Mother to an Autistic Son

I’m including this article today, rather than in the ASD/PDD digest because it applies to Moms of all Special Needs Kids.

I’m tired of being called brave. But being the mom of a deeply autistic young man of 22, I can’t avoid it. Because I survived.

Interpreting the signs

This is an article from one of my local newspapers but I am sharing it because it is on a topic I don’t cover often – Deaf and Hard of Hearing issues. But even more important is this message:

Through my experience, research, and talking with teachers, audiologists, and therapists, I have learned the No. 1 factor that determines a child’s success: family involvement.

 

John Corbett Stars in “A Smile as Big as the Moon,” New Hallmark Hall of Fame Movie Airing Sunday, January 29 on ABC

The inspiring story of a high school football coach and special-education teacher who worked to achieve an impossible dream — to take a class of special-education students to NASA’s Space Camp

If you have found any great resources or stories, please share them in the Comments Section.

Help make The Village Your Village but sharing your thoughts, ideas and suggestions in this short survey. It’ll only take a few minutes but I appreciate your time very much.

 

 

Check out the Cerebral Palsy Challenge

Do you love someone with Cerebral Palsy? Check this out!

Cerebral Palsy Challenge.