Why I Don’t Hold Charlie’s Hand All the Time Now (But Still Sometimes)
July 3, 2008 by Kristina Chew, PhD
Filed under Health
Don’t know about you, but summer has so far been anything but slower-paced and lazy around here. A friend who’s also an academic likes to say that he got into “the business” for the three-months summers: guess I take after Charlie, though, and do better with the same old same old routine of things. I’ve taken on some, or rather, some more administrative duties at work and start teaching summer school next week (a course on Psychology and Literature for high school students—-I suspect I’ll have some things to say regarding it here). It’s also Freshman Orientation time, and this morning was filled with calls to students about classes, putting together readings for the course, planning for a big activity next March the very thought of which is kind of exhausting me, emailing back and forth with Charlie’s teachers about a loud noise desensitization program, grabbing Virgil’s Eclogues to translate with two students for two hours.
Jim and Charlie picked me up at 3pm and Jim went to work on his book and Charlie and I went bowling and then swimming—-well, Charlie swam and I sat down to watch. Until he was 9, Charlie being in the pool meant I had to be in the pool. He’s a better swimmer than me but I felt I had to shadow Charlie. There might be excessive splashing or bumping into people or the wall while Charlie swam on his back, and I dreaded when it was nearing a quarter to the hour, as this meant Adult Swim and I had to drag Charlie out. And I doubted that Charlie would hear me calling to him from the pool’s edge.
He does now, and has been for the past year and a half and while I don’t think I’ll ever be a magazine/summer novel reading mom (though I did find myself in possession of this book, which I read through while Charlie took his usual excessively long shower in the YMCA’s family locker room), I usually watch Charlie swimming from the sidelines. I still get plenty splashed and walk him up the stairs to the water slide (especially if there’s a line), but now there is a bit of a (brief) sit-down and almost relaxing aspect to going to the pool.
Kind of amazing, I would have thought before, and a sign of how Charlie changes and—far from being a toddler in an adolescent body—how he, slowly yet surely, matures.
While I found much that recalls our live raising Charlie in the stories of four Wisconsin families in an article in the July 2nd Capital-Times (Madison, WI), I am uncertain about the title, which is “Arrested Development: Day-to-day struggles of autistic children affect entire family—-which seems to imply that life with autism, both for an autistic person and for her or his family, brings everything to a halt.
On the one hand, it’s true. I do feel as if my life came to a halt of sorts when we found out that Charlie had autism, and there’s been many many times when we’ve stopped projects, career plans, even classes with students opening their textbooks, to take care of Charlie. I don’t regret any of these moments.
On the other hand, Charlie’s development, while not “normal” and sometimes seeming to move eight paces back for every seven forward, continues. I’ve noted his evolving emotional awareness; it’s not only in the pool that he can walk by himself, but also on the sidewalk and even in a store parking lot (though I’m still fast to grab his hand and nervously watch every car). To the random outsider, Charlie does plenty of things that are baffling and don’t seem at all age-appropriate, but I’ve my own internal mom-scorecard, and I know where he started from, and how very far he’s grown, how he’s traveled.
How much Charlie’s changed, could not have been predicted when the word and the reality of “autism” entered our lives in early 1999. At the time the word seemed like a burr that’d gotten stuck in our throats; how it’s evolved into something tall and strong and lovely and unique.
So puzzling—-and at a time when bills for insurance coverage are being passed in different states and when a Michigan is suing another insurance company for autism treatments—–to read about the mother in Massachusetts who failed to seek cancer treatment for her now 8-year-old autistic son. The mother, Kristen LaBrie, was arraigned Monday in Salem District Court and pleaded not guilty to one count of child endangerment; she was released on personal recognizance:
In a police report filed in court, Salem police detectives said the child [Jeremy Fraser] had an 85 to 90 percent survival rate when first diagnosed. He was to get five stages of chemotherapy at Massachusetts General Hospital in Boston and at home, which was to be administered by LaBrie, police said.
Police said in the report that LaBrie changed her son’s appointments a dozen times, failed to administer medication, failed to pick up medications at the drug store and, as a result, “his cancer has returned quicker and stronger.”
[Eric] Fraser [Jeremy's father] said he could not co-parent with his former wife and that tensions grew so high he withdrew from directly caring for his son, fearing that continued contact with LaBrie would end with him facing criminal charges. He said he continued to pay child support but did not see his son from early 2007 until December 2007.
In mid-February, the child’s doctors at MGH intervened after seeing the boy’s medical condition had declined, Fraser and police said.
He said he does not know why LaBrie allegedly failed to get life-saving care for her own child.
I don’t think he’s alone is not knowing why……and what might have happened if…… There is hope and there’s so much we can do, more than we think.
Sometimes now—when, for instance, we’re walking on one of those parking lots—Charlie says “Mom, hand!” and reaches to hold my hand. We walk a few paces and he lets go and walks before me, and I know all I have to do is follow.
Once upon a time we held hands for safety and out of worry, and now, tonight for instance on a family walk after dinner, we hold them purely for the pleasure.
I had a little muse on that walk about what I thought when so many of the predictions were gloomy at diagnosis. I have to admit that it wasn’t anything nearly as good as it was this evening. Life changed for sure, but overall, on its own yardstick, it’s okay, really okay.
for the pleasure, yes—-sometimes it’s very good to know we’re still together.
Good to hear stories that the hand-holding time does actually pass into something sweeter and more voluntary — we’re still at the stage where hand-holding is a necessary way of life. Yesterday morning I tried to multi-task and take out a bag of garbage while taking my 4-year-old to the car, but found I couldn’t both hold her hand AND lift the garbage-container lid AND get the bag in before the lid closed on its own. Had to leave the bag, get her safely buckled into her car-seat, then come back and use both hands to operate the garbage container. One day, this too shall pass!
Starting swimming lessons for her tonight, for the first time…
Kristina, I didn’t realize you discussed the little boy with cancer who’s mother denied him treatment in this post. Thanks for addressing it! I am appalled at the egregious discrimination this mother displayed for her “differently abled” son, and I hope they upgrade the charges to murder when he dies. In one report the boy’s father said he had to call in hospice, so it is only a matter of time.
I am still enjoying the hand holding stage, Alex automatically holds my hands in busy places and around cars, it is so sweet! He still comes to me and sits on my lap, with his long, coltish legs folded up, and just puts his arms around me. He is 7 years, and I hope it lasts a while longer.
I find it interesting that I know exactly what Alex is doing when other people look at him strangely. He doesn’t do anything without a reason for it, it is just that we have to ask him about what he is doing. Invariably he is “driving” some type of vehicle, a plane, train or car, or acting out another idea with his body. Even his aides at school asked me about this, and didn’t realize he wasn’t stimming, he was pretending!
Alex continues to mature and gain skills. He is growing up, and even though our “normal” is different from most others, I love it!
Addendum…I think Michelle Garcia Winner said it well when she said that autistics don’t lack imagination and pretend play, they just don’t have “shared imagination” or “shared play” as much. I see this with Alex, but he is learning how to play with others, as he greatly desires friends and to have play dates and learn how to play with others! He starts his “Social Wizardry” class today and excited to make some new friends!
So funny you wrote about this because just yesterday M said as we were getting out of the car, “Mom…please hold my hand because this is a very dangerous parking lot.”
It seemed odd because we usually do hold hands through the lots. As it turned out she was having the start of an “episode” and was getting dizzy. As sad as it seems she gets sneaky and tries to hide them. I guess a form of denial or not wanting to dissapoint me that we have to rush back home.
We usually hold hands but I have just begun to notice that not many other ten year olds are holding their mother’s hands everywhere. In a way, I love it. We get to have that closeness a tad bit longer than most. I am guessing it will slow eventually.
I read about the Massachusetts boy on Wednesday morning — how could you sit by your child and see him dying every day?
@Marla, interesting—–Charlie had a period when he was throwing his food. Never quite figured this out but now he’ll call me over sometimes and ask me to hold his plate before he eats. I suspect he can feel or sense that whatever caused him to throw his food in the past is “acting up” and he’s asking for help (gladly given).
There is a comment on that article about the families:
“People need to know that increasing paternal age in one generation or another is a major cause of autism”
So how come Larry King’s two boys are not on the spectrum?
That is about as lame as the one where low birth weight is a cause. Mine were 7 and almost 10 lbs.
The story about the boy with cancer is so tragic. That woman cannot be called a mother. What a piece of trash, if you excuse my French.
Poor Jeremy Fraser.
I suspect this case will get messier before it is done, and none of the adults will come out looking good…the negligent mom, the absentee dad, or even the medical people, who did report the missed prescriptions and treatment visits, but it took 5 of one and 12+ of the other; since it was stated that a call to CPS/DSS sometimes “wakes parents up”, perhaps that call should have come sooner to flag everyone’s attention because this is a family that had had prior contact with DSS for abuse and neglect allegation and a child removed.
Mother in cancer case lost custody of older child
As others have noted, I am having great difficulty in comprehending what might be going on in someone’s mind if a child is literally dying in the home and not accessing the treatment, which in this case had a clear protocol for efficacy and treatment schedule.
That it started out as something with such a promising prognosis and is ending like this is really terrible.
Mother in cancer case lost custody of older child
reports of patterns of domestic abuse—Jeremy found wandering by a gas station at the age of 7—-alcohol perhaps—–seems like there was way too much in this case: Was DSS looking into this enough?
I still have to hold hands in parking lots. The lack of a sense of danger in my Boo, and the lack of a need to learn to drive before getting in a car in Ireland combines to make this a neccessity.
But we need to do another course of tag teach as mummy’s arm becomes a swing toy on the way to get anywhere.
As for physical contact. He is 10 1/2 and almost as tall as me. I still hug and kiss and hold him in public. A friend of mine was told to stop hugging her 12 year old daughter by a psychologist, who said it wasnt age appropriate. I disagreed. Ireland just isnt a tactile or demonstrative country generally. They barely shake hands!
I notice when I go to the latin countries like Spain or Southern Italy that you see even older children getting hugged or holding hands with parents as they passagio in the evenings.
But if Boo ever “out grows” me I know I will still have one thing each day. Is there anything sweeter than rubbing a towel into your son’s newly washed and soaking hair?
xx
I can’t believe that I missed that article yesterday. Madison does have a way of making everything “extreme”. I do think the article showed more of one side than the other, although Pam and her son calvin live three houses away from us in McFarland and I can say she does have a lot on her plate. It makes me thankful for what my boys can do. Madison love extreme left wing causes,esp the Cap Times, so no supprise it makes autism sound horrible. If they had interviewed me, i could have told them a story about love, joy and life with autism. Your family doesn’t change with the diagnosis. Yes, its there, but it is one piece of a very large and delicious pie. I look foreward to life with my sons every day and so do many families in the Dane county area and around the world.
Thinking about outgrowing holding hands.
I wonder when as a society we decided that was “sissy”, something more significant than simple friendliness, or not done. I like to read 19th and early 20th century literature, and watch old movies and even same-sex high schoolers, usually girls, are walking hand in hand, and in some books of the 19th century, guys have arms over shoulders and around waists as part of being friends.
Maybe society needs to loosen up a little bit
.
From the Worcester Telegram about Jeremy Fraser:
Patrick and I held hands for the pure joy of it today. Sometimes we HAVE to do it because of safety…but just today we went to the store and Patrick stayed with me while I kept up a constant verbal stream of “that’s great Grade 1 walking, good job staying by my side, look at how carefully you’re walking and watching for cars….”. It was a fabulous moment. Then, when we were walking later, he came up beside me and slipped his little hand into mine. Oh the joy of it all.
I don’t know what to say about the mom who didn’t get her son the treatment he needed. It makes me very sad.
The conclusion of the story on Jeremy Fraser,
Jeremy died from his cancer Monday, March 30, 2009.
I hope he was able to enjoy his last days.