02 April 2012

Four in the morning in a condo with as many families as there are sleeping surfaces. This is not a time to be out step with the general population and awake. I am very much aware that my space bar has an audible click that may drive at least one of my roommates crazy. If I type slowly I can minimize the sound. Maybe slow typing will put me back to sleep.

This is a large, friendly, kid-dominated group --6 adults, all except for me part of couples, and 14 children. The children range in age from 6 to about 14. I really hoped that Julia would be included in one of the subgroups of kids but the girl close to her age, maybe a year younger, had a good friend with her yesterday, and those two were absorbed into the activities of some bigger girls. And the bigger girls don’t know Julia, and are unsure of her. The littlest boy tags along with his bigger brothers, proud to be included. One or the other is these kids has reached out to Julia a few times, and if Julia had taken the cue or if she had inserted herself into the hall tag game or sat around the hot tub with her feet dangling in the water and making kid conversation, she would have been accepted. Cheshire, at 11, would have had a great time. But Julia doesn’t pick up on the cues, instead she shows one or another of the kids her coloring or drawing or math workbook or offers M&M’s at inappropriate times.

I watch. None of this surprises me and yet, I have to admit that there was a small spring of hope that she would integrate somewhat seamlessly and not look to be so much the odd one out. This is the process of inclusion that has its heart breaking side. Many days, when I ask Julia about school, she tells me about some recess game that she played. I ask if she played it with anyone and she says no. I can see her in my mind’s eye alone with the activity and noise of playing children all around her. Yesterday, I did not need to imagine it.

Sometimes I comfort myself, remembering that I was a solitary child. I rarely played on the playground with my school fellows. I was not asked to join games, and my shyness prevented me from offering to join in. But shyness is not autism. I did play with my siblings and the children of my parents’ friends whom I knew from my earliest years. I did not miss broad cues to join into games, nor did I prefer lonely pursuits. Julia passionately wants to connect with other kids but cannot.

Still, I have some hope that by putting Julia in situations, however awkward as they seem at the moment, along with the direct instruction in relationship that Julia gets in therapy, that she will learn. Is this the hope of every parent of a disabled child? I know that Julia is not normal, yet after living with her for more than five years, I do not see her as that odd.

Other than Julia’s solitary state, I notice the small size of my world. Now, I have chosen it to be so, at least for this year, but for a moment or two at a time, it can scare me. I have created a very small cocoon around Julia and I in which we both function as individuals and as a family. We have small, quiet rituals that get us through our day. When David was alive, our family structure was always like this, but somehow the inclusion of another adult created a world for me that did not seem cut off from community. It was more that we were a self-sustaining very small community within ourselves. Alone, with only Julia, we are not a community, or I do not feel us to be a community. I recognize that it is this feeling that encourages me to do PTO work, to volunteer at church. I can feel like I have to work harder than most people to get a foothold in community, but that is merely self-pity. Yes, it is hard to feel a part of any community with my life partner gone, but my struggle to reconstruct life, to find community as a single parent of a disabled child is not unique in the least. My self-pity may actually be on the decline.

Tomorrow, or rather later today, we will begin again. The group has planned a morning walk, before an afternoon spent in the indoor water park. Perhaps, during the walk, I can urge Julia to join in with a few of the children, and again hope that she is swept up into the larger group when we reach the water park. Perhaps for a little while, it will come together for her. If it does not, she will walk with me and later I will hang out with her on the slides and splashy walk-throughs.

Perhaps, perhaps, perhaps. I have not lost hope for this child of mine. I can be sad for what I perceive she is missing in her childhood, but I still hope that she is able to dip a toe into some of the gleeful experiences of her youth.


Debbie and Sam said...

I have been reading your blog on and off for since you brought Julia home. We were waiting for our daughter at the time. Have you ever considered getting her involved in Special Olympics. It is a place where she would be accepted for who she is and not judged on who she is not. No sports skilled are needed. They have something for everyone. Not to mention a bunch of parents feeling many of the same things that you fee. Just a thought...

Suz said...

I will probably explore Special Olympics when Julia is finished with intensive therapy next year. However, from what I've gathered from other parents, organized activities like special olympics is good for exercise and possibly for learning some skills but not for making friends. At times, those challenges are only intensified in a group of people who lack social skills. Not a reason not to try it.


Annabelle said...
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