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A Rambling Summer

August 2, 2013

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”
― Douglas Adams, The Long Dark Tea-Time of the Soul

This has been a hectic summer. We moved to paradise at the end of the school year, and spent most of June repainting the old house preparing it for sale. Then we went up to my parents’ home on Martha’s Vineyard for the better part of July, spending our days soaking in the cool, healing waters of the Atlantic and our evening navigating busy restaurants with family. It was fun, but difficult. There were more meltdowns than in the past as my children tried to process multiple transitions. And now we are home and back into the full swing of a busy summer therapy routine. This has been a bumpy summer for Troy, his first summer free from therapists since kindergarten has still been filled with therapists visiting his sisters. It has been an adjustment, and as you may or may not have noticed, there has been little time for writing here. So forgive me if this isa rambling post….

The tests should be coming back soon. The crystal ball tests as I’ve come to refer to them. Mary’s entire exome has now been sequenced. Every coding portion of her entire DNA is now being read. The blood was drawn nearly a year ago now, and the results should be ours in just a few weeks. To say I am nervous would be a gross understatement. I know we won’t get all the answers. I don’t even want all the answers. But it would be nice to have a path, a little taste of a roadmap even. To have a little more information about the journey we are now on. Mary has developed a list of characteristics, you might say, that need to be carefully managed by teams of specialists. It would sure be nice to have an idea of which specialists we actually need to be seeing, so we don’t waste any more of her precious time. I know why we are still looking – the physical changes, the funky blood results, the regressions, the seizures, the unknowns. But I am not sure that our friends and family really understand. They see the autism. They see the lack of speech as lack of progress, and while it might appear to be the most obvious symptom, it is the one I fear the least. She is signing more each day. She is communicating with us through behavior, ASL, and PECS. She is sharing with us. The mode of communication is so much less important to me than the fact that she is doing it. Our “all of the above” approach is working.

But in leaving home – that safe place, filled with people who get it- and go back to my old home, I realize just how far of a journey that is – and not just in the physical sense. My old home is filled with people who, while they try to understand, just have not lived it. After making this journey a few times, you realize that the people who “should” know you best actually understand you the least, and the place where you once felt safe and sheltered has become something from which, at times, you must shield your own children. Sometimes, going home again can make you feel so much farther from home than ever before.

The questions never change. The questioners, maybe, but the questions themselves roll around in circles until I simply become dizzy with them.

“Do you think she’ll ever speak?” “What do they think?” “How long do you think they’ll need the services?” “When will you move back home?” “Do they know what’s wrong with her yet?” “What caused all this?” “Was it the vaccines?” “Did you take enough vitamins when you were pregnant?” “Why can’t he deal with the noise? I thought he was better now?” “Does he ever stop moving?” “Who’s really in charge here? Why do you keep giving in to them?”

The questions never stop. They are well-intentioned, of course, for whatever that’s worth. But it’s exhausting. And honestly, they hurt. I know that might sound selfish, but after having the same conversations over and over again, the questions start to sting. And I worry for my children. I worry that they may overhear, that they might infer some level of truth to this line of questioning. It hurts me when I hear it because it seems so much like a barrier in the relationship between my children and the questioners as well. I see the way some of my family look at my children, and I ache for home. I ache for the familiar – for the restaurants with the quiet booth in the corner and the waitstaff who know us. I ache for the comfort of other special needs families with other autistic children, the comfort of not having to explain anything. The gentle nod of understanding. It’s difficult to admit that I can’t find that in my childhood home, but at the same time I am so grateful to have found it where we are now.

Don’t get me wrong, vacation was wonderful. It was freeing to bring my children back to the beach, to see Troy and Joyce learn how to swim, to watch Mary be so free and agile in the water with her little floaties. I could have stayed in that ocean with them forever.

At the same time, it is good to be home. While it has meant a return to the daily grind of five hour therapy sessions followed by doctors appointments with a few summertime outings carefully snuck in between, it has also meant lazy campfires in the back yard, cold drinks on the front porch and tractor races in the driveway. It has also brought a return to the friends who have become family – the ones where no explanatinons are needed. The questions are easy here – which drink would you like? a hike in the woods or an afternoon at the lake? what color of ear molds (hearing aids) are you going to get next? what did you think of their feeding program? did you like Dr. Smith?- The seemingly accusatory questions about progress are not to be found here. We speak so much of the same language, me and my special needs mom friends, it feels so much easier.

Last week wee went to a baseball game, the tickets given to us by the company that provides the behavioral teams for my children. They were kind enough to include an extra ticket and my Dad just happened to be in town, so he got to come with us. The seats were great, but perhaps that wasn’t the best gift. We were seated together in a section that we quickly realized was filled with other autistic families. Our kids happily cheered, squealed, danced, scripted and recited statistics with not so much as a second glance from anyone else. It was freeing and relaxing. And our team won handily. My ki made it through 9 innings if major league baseball. My kids – the ones who can barely make it through dinner in a loud restaurant – made it through 9 innings in a stadium!

Now that we’ve been home again for a few weeks, finally starting to unpack and settle into our new house, our attentions have shifted back towards the fall – to preparing for a new year. It is suddenly dawning on me that my sweet little baby girl will be four years old in just two short months. She has grown and changed so much. But we still have so far to go. The pressure of conquering potty training with another of my girls looms large again, only this time it may prove to be an even larger obstacle than with her sister. I can’t even get her to assist me in getting herself dressed, how can I possibly expect to potty train her.

Each night I collapse into bed with an aching back. Mary is still not able to navigate stairs independently or walk for long distances. In my mind she is still a baby – she is my baby. But the weight of her as I carry her through stores, up stairs and across parking lots tells a different story. We just purchased a new, sturdier stroller for her. It is more supportive for her than the umbrella stroller which she has now outgrown, and more comfortable than the regular travel system stroller that we had used for mall outings. An added plus, it folds up smaller, so I am less likely to leave it at home. I hope will last her long enough to build her endurance to a point where we won’t need a wheelchair for her, as has been recommended by some of her doctors. But the constant dull ache in my back reminds me that I won’t be able to carry her forever.

This week I brought her to a very special place that specializes in very special children. They evaluated her for more physical therapy, and are now scheduling her for feeding therapy, occupational therapy, and possibly even a class focused on augmentative assistive communication or AAC (using devices like the iPad for communication). I tried to take last year off as much as we could from therapy outside of school. I felt like starting school was such a big adjustment, we would need to be careful with her schedule, for fear of bringing back that terrible fatigue that seemed to be contributing to her seizures and regressions. But now, it seems like it is time to once again kick things into a higher gear. She is getting older, and as my constantly strained back keeps reminding me, she is getting bigger. She needs to be more independent. So we will try a new therapy regime and hope we don’t see a return of the seizures (or whatever those episodes were) that had plagued her when she was younger and we overstuffed her schedule.

She has also developed a more difficult problem now, pica. She has been eating anything that comes her way – paper, dirt, mulch, sticks, rocks, grass, leaves. I’m not sure how to deal with this one, especially given her choking issues. It has presented itself as a potentially serious issue. I’m not sure if this is related to her anemia or if this is just another sensory thing to tackle. We meet with hematology again next week, but I’m not expecting any answers there either. I’m just hoping that she is maintaining her counts so that we don’t have to move on to any of the scarier options that have been laid out for us. Pica can be a symptom of worsening anemia, or it is just another sensory issue from the autism. She has also had several incidents of jaundicing, but these have been spaced apart and seem to be relatively short-lived, so I am hoping that, again, it means nothing. So many of her issues are potentially just sensory or potentially a sign of a more serious problem. This constant teasing out the answers feels like a constant riddle. It will be a relief of sorts to have those crystal ball tests back.

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