Up For Down Buddy Walk

Today was our first attempt at participating in a Buddy Walk.  Ours is a pretty small group but we managed to stop traffic for a quite a while anyway!  It was fun to meet some people I hadn't met before, run into friends we hadn't seen for a while, and see face to face some of my Facebook friends that I'd never met in person or only occasionally seen in person in the past. Our younger son doesn't have Down syndrome but is in a special education class and I just today learned that one of his aides has a son with Down syndrome.  It really is a small world, our special education bunch!

When we walked up to the registration table Megan saw another little girl with Down syndrome and immediately gave her a big hug.  It was so absolutely sweet and unexpected!  She sees that she is looking into a mirror of sorts and she enjoys that.  I have always believed that it is very easy for me to love every child with Down syndrome since they all look just enough like my own daughter that I feel a kinship with them.  I saw today that she feels the same.

Megan's autism got the best of us after a while and she just couldn't take anymore, but at least we got through the walk and got to be a part of something bigger than ourselves.  It seems that the money is going to offer great services for our families, free workshops, at least two monthly support groups for parents, and quarterly dances for those 12 and over with any kind of disability.  The dances may sound like no big deal, but I took my daughters to the last one, and it was such a great chance for them to practice being in a typical social situation without all the usual pressure.  That's what is so great about these kinds of events - the lack of pressure to do everything right.  They are separated by their disability already, so it's important for them to have a chance to practice and feel safe in making some mistakes.  It's also great for us parents to be able to sit on the sidelines and see if they are really ready for the social events at school that we aren't sure about.

I used to feel uncomfortable asking friends and family to support these groups but I'm starting to feel more comfortable with it now.  We can't do everything for our kids, but with support and encouragement like the kind this group offers we can offer our kids a better life and we can offer our parents a way to make that happen since none of us can do it alone.

Just one final word, our walk was done in memory of James Bond Jennings.  He was a young man in the group who died last year of pneumonia.  He had lost his mother to cancer just a few years before.  She was one of the founding moms of our little group and his dad, Grady, built his business around making sure kids like ours have a means of support after we parents are gone through Special Needs Trusts.  This is quite a family.  Grady with others put together a golf tournament to benefit the group in memory of his wife and son.  James' friends each shared something that they loved/miss about James and let go a balloon as they shared.  It was absolutely touching and brings a tear to my eyes even now.  I know whenever I see a blue balloon in the future I will think of James Jennings and how much his friends loved him.

Who Among Us is Really Sure We Couldn't Be Next?

Autistic Teen Clings To Life After Stabbing
Boy Moved To A Different Hospital

Reporting
Andrea Menniti
MODESTO (CBS13) ―

Neighbors of the mother accused of repeatedly stabbing her autistic son say they had only known the suspect as a devoted mother and autism activist who loved her son more than anything.

Anitra Hankins, 36, is under suicide watch in Stanislaus County custody on charges of torturing, tying up and viciously attacking 13-year-old Miles Hankins on Sunday night.

"He had stab wounds all over him," said next-door neighbor Christopher Tooze. "A big stab wound in the head."

Acquaintances were at a loss to describe how the incident could have happened. Anitra Hankins was regarded as a great mother who once served on the state Council on Developmental Disabilities.

In her 2004 resignation letter to the board, Anitra stated, "My health and that of my special needs child will not permit me to continue fulfilling my responsibilities as I would prefer."

The single mother passed out fliers and held prayer vigils for Miles in May while the boy underwent dangerous but lifesaving surgery, neighbors said.

"For her to do that, it seems like Dr. Jekyll [and] Mr. Hyde, you know," said neighbor Gordon Jameson.

Miles is still listed in critical condition at the hospital. He has was transported to a different, unnamed hospital where he remains under the care of child protective services.

A memorial supporting Miles is growing outside the Modesto apartment complex where the attack took place.


There isn't a lot to say here except that the people who are charged with helping our kids to learn to live with some meaning need to get a handle on actually doing that job. I am so grateful that I have friends and a husband I can talk about my frustrations, fears, and anger with. Though the friends are few these days since most people don't understand what we go through and want to avoid it like the plague. I completely understand how parents can go over the edge when it is a struggle every day and on top of it we have to fight-fight-fight for just the basics for our kids. All I ever used to ask for was teach my kid to talk/understand/communicate. Now I want more, but not much more, I want her to get enough services and educational benefit to live a safe and happy life. I'm sure there are a lot of other parents who feel the same, yet we meet confrontation at nearly every turn. It's no wonder people suffer psychotic breaks, most of the time it seems impossible to help our kids and that kind of stress can overwhelm, especially if one does not have a good support system. If we think we could never be in this woman's shoes then we are the most vulnerable. Realizing that any of us given the right (or is that wrong?) set of circumstances could suffer a moment or more of insanity is vital. It is in the preparation for such an event through the building of support and personal transparency that will keep us from this type of tragedy.