Touch My Child Again And Die


I remember writing this a little over a year ago. I remember the angst I felt over the whole “friend” situation in the community in which we were living. And then today as I was driving around, I realized how free I feel now. Certainly the change in geography has helped that. I’m just not hanging out with those people who seemed to feel most alive when were picking apart my life. But it’s also the complete spiritual and emotional transformation that’s happened since we left town (with narry a word to anyone). I don’t miss my old life. I do miss some people from that life because I did manage to select some decent friends (more likely, they were miraculously dropped into my life through no doing of my own) but overall I’m so content to be the person I am today and I’m so grateful to not be socializing with demeaning people.

So hear goes…a glimpse into the pysche of a mom with a kid with a disability:

Thanks Dianne for bringing up this topic. It seems like a month ago when I read this.

It’s been a real peach of a week, dealing with some emotions and situations that go with have a child with a disability. And since it’s been such a ducky week, I just now got to read all the P2P e-mails, including the ones on this topic and I really appreciated hearing from Holly and her experiences in her weekly book group.

My first thoughts were, “Dang, Holly must be SO organized with her time and resources to be able to go to a weekly book club…how cool!!”. You inspired me Holly. It’s something I’ve wanted to do for some time. What a great topic too. I cried and laughed all the way through Expecting Adam.

Emotions: in the past year I have in effect totally withdrawn from a group of so-called friends because of their treatment/comments/opinions about my son Hayden and my parenting skills. This is a good time to say that I’m really glad we’re not in a real time conversation and that I don’t have a web-cam because this is a tough topic for me. Hayden has all his life battled hearing/ear issues. That on top of Down syndrome and a bout with life threatening seizures that have left him FAR behind in all areas on development compared to his peers. The past couple of years have been one ear infection after another. Lots of visits to the otologist. Before last June he had his left ear reconstructed. But by June we had no choice but to go in again and have another major reconstructive surgery. So that’s the background: lots of infections, lots of meds, lots of ear drops, lots of doctor appointments.

And throughout the past couple of years a couple of “friends” have dropped not-so-subtle hints that my husband and I are not trying to get rid of his infections aggressively enough. They didn’t see the hours of behind the scenes work of talking to doctors, trying to boost his immune system with vitamins, using all the ear drops 3xdaily, and literally wrestling him into a head-lock to force oral meds down his throat.

The kicker though came at a playgroup last Spring. More background: Hayden loves music. Hayden seeks out ways to make his own music or hear it in some way. Hayden is also not real big on different types of food or things that are sticky. We were at a sensory integration playgroup where the kids were about to eat smores. the minute all the kids gathered at the kiddie size tables for the food, Hayden left the room. I watched him and thought “no big deal”, he doesn’t need all the sugar anyway and he’s been pretty good about participating in the playgroup so far….I’ll let him go off on his own.” He went off into the living room of the house where we were meeting and immediately went to the gas fire place (it wasn’t on) and stood up onto the ledge and put his head against the fireplace screen. The husband of the host came up and stood next to me and I commented that I thoroughly enjoy watching Hayden take in his surroundings. I really do learn so much. Then the husband said, “He’s making music…watch”. And sure enough, Hayden was rubbing his fingernails and fingers along the grate and listening to the sound. Well about that time another husband came into the room and stood with us for a minute and chit-chatted. He was then called away by his wife and the next thing I know, this man is walking behind us, making a bee-line for Hayden. He scoops him up from the fireplace screen and plops him in a chair in the middle of the smores party. I looked at the man with whom I had been talking and I said, “They have an agenda for Hayden”. And they did. They forced the graham crackers and chocolate into his face and he immediately shoved them away and slid off the chair. I was so proud of him but I was FUMING inside. At that point the mom says to me, “I guess Hayden’s not interested in snack today”. I politely responded, “I guess not”. I was so mad I thought I could have spit nails. I haven’t been back to that playgroup since and I won’t let Hayden ever be with those people alone.

Over-reacting a bit? Probably. I’m nothing if not passionate and dramatic. But how DARE someone decide how my son is going to experience something. The message I read was, “You’re just letting him go off and be by himself when he should be participating in the group.” I could be wrong but this family has a little bit of other history in deciding how my family should live. I just snapped inside. And it was at that moment that I realized that people who have kids without disabilities can be “quick” to decide how and why a child is reacting, acting, or behaving in a certain way. They don’t know. Heck, we barely know some of the times!! It was extremely hurtful to see someone force their way onto Hayden and I won’t let it happen again.

Sorry for the epic post.



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