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

1 Comment

  1. So sorry to hear about what happened to Samantha’s daughter, there’s just no excuse. Perhaps she could find an advocate to work with her through the Council of Parent Attorneys and Advocates—http://www.copaa.org