Johnnie

I think I've mentioned that our main issue in caring for him is the 5pm to midnight shift. He is obsessed with 'za' as in pizza/food. He'll wake out of a total sleep sometimes for 'za' which I think substitutes for comfort/attention.

One of the things that I found when Angie first came out of an institution was that she didn't want to hug anymore. That's a huge thing - 1. because Down Syndrome love physical touch and hugs and 2. she was uncomfortable. There's an issue when you do care especially for adults who have developmental disabilities - appropriate and inappropriate touch. I've run into it when Angie has had a day program put 'appropriate touch' into her IEP because I and my ex-husband encouraged her to hug us goodnight. We firmly believed (and were proven right) that in being able to hug again, she was able to trust, open up and grow further as a whole human being. However, the particular day program she was in, was concerned about her hugging strangers. It wasn't so much that she initiated the hug but that if someone moved in a certain way (particularly when saying goodbye) she would react the way my husband and I had 'taught' her and do a 'half hug' rather than a handshake. They wanted her to be able to differentiate between handshakes and hugs - she's mentally not quite able to do that. To redirect her, we suggested things like stepping back (non verbal signals) and high fives or even a hand bump. We went through that process for a few months and then I witnessed a staff member give a non verbal 'signal' to say goodnight to Angie that indicated to her that it was 'hug time' and the staff member told angie that that was inappropriate.

Just to clarify - my sister is nonverbal. She doesn't speak or use sign language unless prompted. However, she is very good at body language. For instance if you ask her something she can very clearly respond with a "yes" or "no". Yes is actually pretty funny - its usually a smile accompanied by a head bob and using both hands to sign a mix of Yes and No - two fingers crossed over the thumb - I believe the two fingers over the thumb is no and a fist bobbed down is yes. So she uses both her hands, with her finger over her thumb and simultaneously moves them in an up/down motion with a smile and a head bob for "Yes". For no, she turn her entire upper body including shoulders to one side about 45 degrees, her face will tense up and she'll throw her hands out in the opposite direction, all five fingers splayed open.

Therefore, its very clear if she wants or does not want to do something. That being said she is generally very easy going. If she's cranky she'll be less coopertive, have a tendency to smack with her hand the dog or person walking by her and if she's in trouble she will actually make a yell with her vocal cords; the reasons are generally easily deduced. Its either physical (ear infection/cramps) or emotional (she hasn't been given enough attention - i didn't say hello to her when i got home from work or everyone has been fussing over john and ignoring her.) However, her needs are fairly simple. She has toys she likes to play with, she can get up and get her water herself and we encourage her to get her occasional soda herself. I give her the food she eats for lunch but she can feed herself. I give her the clothes to wear on and unless we are going out, she can dress herself. if we're going out, I need to make sure the bra is on and the clothes are right side in and on.

All this is leading to John. He's been in an institution for a long time. He has had to compete with others for attention and he has absolutely learned some bad habits. He's also on medications for those anti social behaviors. But one of the things that is slowly working with him is to consistently and slowly continue to hug him, stroke his hand and even tickle him. These simple, normal interactions remind him of the joy of human touch without it crossing over into that super paranoid "is this appropriate."

This isn't meant to disregard the very real issue of sexual abuse particularly in those with developmental deays because they can't tell us. However, touch is absolutely vital and when someone is deprived of it, its as abusive as a slap.

These 'good touches' have awakened in John more of a need for his "Mama" and when my mom is around, he constantly looks to her for attention and food. In many ways, food has become even more his comfort than before (and he has always loved to eat.) But given his mental age, that makes perfect sense.

If it was just that John needed to adapt to 'good touch' and stop the pinching and possibly learn how to amuse himself instead of needing out external stimulation - then we wouldn't have to place him. However, there's doubt he can get to that point in his development and that kind of change took years for my sister and she could feed herself and dress herself before.

That five pm to midnight shift is exhausting but its also reinforcing that he cares that we are around. Sometimes in the past, you sometimes wondered if he noticed we were here. The answer is "absolutely." So in my eyes, a group home that can understand that - that can work on redirecting him - time in a recliner with music on the tv, time sitting at the kitchen table while dinner is being made and yes, a room where he can be safely contained if he has an outburst and he needs to 'calm down'. Those four to seven hours are the difference between sanity and breaking point for my mom and to some degree myself.

However, it is absolutely great to be able to narrow down these behaviors and eventually maybe we can help them change. Like I said, it took a lot of time with Angie.

Timeline is touchy dependingon what is available but another month probably though something could happen in a week or two or it cold be a matter of waiting for an almost perfect fit.

I sit here and he's sleeping now. He's on the couch. He doesn' want to be in his room alone and while he struggles with continence, he has a depends on and there is a rubber mattress on the futon as well as a layer of cotton towel, soft bath towel and a 'cotton absorbent' chuck.