I’ve occasionally heard some parents of typically developing children (and politicians!) criticize our community with statements about how it isn’t really that different to raise children with disabilities. That we should stop complaining and positioning our children as “special.”  Children are children after all.

Well, yeah, children are children. But let me share two things I learned about just yesterday to illustrate how different life can really be for us and our children. These are two events I learned about in just one day that illustrate the range of things that occur in our families that may not occur in others.

Seder Max
Ellen Seidman recounted on her blog Love That Max a story about her son Max, and his ability to for this first time, this year, sit through an entire Passover Seder. And even communicate that he enjoyed it and wanted to do it again. The post recounted her sheer joy as a parent in reaching this milestone.

Sure, typically developing children may have myriad challenges at family dinners and events. But in most typical circumstances, the issues surrounding holiday meals usually don’t involve a child not being able to participate at all on a regular basis, and don’t require the full attention of one or more caregivers to help the child through the entire event.

Love That Max guest post

Helping our young and adult offspring with disabilities participate and interact and enjoy—and have our families enjoy with them—is sometimes something that is all but impossible. And it is something that, when it happens, is worthy of extreme joy and thankfulness!

The Hospital of Doom
Yesterday my friend Samantha (not her real name) shared with me her tween-age daughter’s experience in her latest psychiatric hospital visit. The child was in the hospital due to violent outbursts and causing harm. At this hospital, and remember this is 2000 and freakin’ 14, there was an 8 minute lapse in direct supervision of her shared room. And she was accosted by another female patient for up to 8 minutes while a caregiver stood outside the door to the room either unknowing or ignoring the issue. Either way, unacceptable!

Samantha, already at the end of her wits caring for this child, raised quite a stink (of course!) but was presented with block after block from an administration only concerned about legal ramifications.

The child, at the hospital to adjust medication and get help, got pushed further into crisis because of this attack.  And Samantha is worried about pushing the issue further because she is worried about staff possibly taking it out on her daughter.  Change hospitals you say?  There are no other hospitals in that region.  Bring her home you say? Eventually, but what about safety for herself, the child, and the rest of the family?

Intractable problem? We shall see what transpires as our thoughts are with Samantha. Do you have practical suggestions for this mom?  Know someone at the federal level who can intervene and help her overcome these local yahoos intimidation?  Private message me or comment below. I’ll share with Samantha (again, not her real name).

Share these two stories when you need to

So, the next time you hear a person belittling our community of parents and young and older offspring as “whining” and wanting “special” attention, please remind them of these stories.  We don’t want “special” attention. We just want to live a minimally happy and safe life, just like everyone else.

Best to all,

Gary

30. August 2013 · Comments Off on Lessons in love and intergenerational hand-holding · Categories: advocacy, Gary's Son, parent education, violence

Hi,

My latest piece is up on the Good Men Project.  It’s called “We’re Not Gay, That’s My Son: Lessons in love and intergenerational hand-holding”

Click on the image to have a read.  And although this particular essay is not in the book, there are 41 pieces by moms, dads, kids, (and me) in the Dads of Disability book at www.dadsofdisability.com

good-men-hands

 

 

 

 

 

 

 

 

 

 

 

Thanks,

Gary

 

23. August 2013 · Comments Off on The anti-Ontario-autism-hate-letter experience · Categories: advocacy, Gary's Son, parent education, sites to visit, violence

Hi,

That damned letter from Ontario, Canada from that sicko abusing a family with a child with autism.  Enough said about it. (If you haven’t heard of it yet, here’s an introduction to it.)

I believe that there are good people in the world.  And that they outweigh the evil.  Here’s my example from Wednesday.

We were at the Squam Lake Science Center in New Hampshire. The whole blended family. It was almost the only day all summer that we were able to do something together.

A. was doing great when I picked him up from school – but he had a very severe 45 minute meltdown in the late morning.  (He was a delight before and after though.)  During the meltdown, despite my best attempts to keep him and others safe by removing us from the situation, he ended up grabbing a woman on the arm very hard and pinching and leaving a mark. Had this woman and her family been anything other than the angels that they were, there could have been big trouble. She was actually hurt a little bit on her arm, but we separated and I helped A. get to a safe place.

Later on, we saw the woman again and I profusely apologized to her and her husband. I asked her if she would be willing to have A. apologize to her with her standing a few feet away. The tantrum was long over and he was in control, and the lady allowed A. to apologize for hurting her.

It was this lady’s understanding and compassion — her acceptance of an unacceptable event in public — that makes me think that the “Ontario Letter” crap is the ultra minority of opinion. An opinion we must make note of and combat.  But of such utter insignificance in comparison to the good in most folks.

Gary

 

19. June 2013 · Comments Off on Violence against kids. One witnessed by me. What can we do? · Categories: advocacy, parent education, violence

Hi,

I don’t want to editorialize too much in this post, so I’ll just list some things that have hit me hard in the past few weeks. And, in some sort of ironic punishment, came full circle right in front of my face on 17-June 2013 when I witnessed a vicious child-on-disabled-child act of violence (jump to #5 below).

So, here is the list of things that have haunted me this week, sans (much) editorial comment:

1. Alex Spourdalakis  Just Google his name.  A horrible murder that is not about a lack of services (though that is a dire issue in the world).  There are so many vectors of discussion, shame, and anger — other discussion threads have addressed them. I just want more people to read about Alex.

2. Ethan Saylor Just Google his name or read this Op Ed by his sister, Emma Saylor. A horrible murder that just the simplest compassion or training could have prevented. (Ed. I realize that Ethan was not a child.  But he was someone’s child.)

Ethan Saylor 300x230

3. The continued use of electric shock for punishment and training at the Judge Rotenberg Center (JRC) in Massachusetts.  This is 2013, isn’t it?

4. The short film Restraint and Seclusion, Hear Our Stories by Dan Habib, New Hampshire Auteur.  Worth a watch.  I repeat, this is 2013, isn’t it?

Restraint and Seclusion: Hear Our Stories  from Dan Habib on Vimeo

5. A vicious beating I witnessed myself

I witnessed a young child (perhaps age 9) viciously beating an older, larger child (perhaps age 13) with a stick, with about 4 or 5 other children looking on.  The 13 year old had some type of intellectual or emotional challenge, I don’t know what (I assume something like or actually Autism, I don’t know).  After I broke up the violence and asked the 13 year old if he was OK (he seemed unharmed physically), I followed the perpetrator home and chatted calmly (yes, it was calmly) with his folks who weren’t always so calm.  Some points here:

  1. I absolutely should have stayed with the victim, brought him home, and called the police.  I am angry at myself for not doing that
  2. The perpetrators family was shocked and I was told by the mother that the child himself obviously had problems. It shouldn’t have to have been me having this discussion.
  3. What a dope I was not to stay with the victim and to heck with the perpetrator!  I should know better! I feel shame.

So, the next day, wracked with guilt and concern about my mishandling, I went to the police in that town to file a report.  They were polite, but the officer:

  1. Didn’t write down more than 12 words on a small piece of paper
  2. Said “we aren’t in the habit of arresting 9 year olds” even after I had previously told her a few times I was hoping that she could go to the parents of the perpetrator to (1) query the kids friends and locate the victim to inform the parents and see if all was OK and (2) To make sure that the 9 year old aggressor had some access to services (this wasn’t a fight – it was a beating!)
  3. Didn’t have me sign a police report or even sit down in a private place to talk.  Though they were very interested in my name, my date of birth, phone and address
  4. Told me all she could do was inform the “school officer” (this took place next to, but not on, school grounds after hours) and let them try to identify the victim.

I did in fact make a mistake not calling the police initially.  However, I am quite sure the officer was giving me lip service.  This was NOT in my town, but it was in a mid-sized New Hampshire town.

Yet, I remain an optimist.  The world is filled with so many good folks, I have to keep reminding myself!

Take care,

Gary