Change and Change Again
Marla who blogs about life with her daughter Maizie wrote recently about Maizie’s uncertainties about change and preference for things to stay the same. This is a topic I have thought about a lot: My son Charlie, like many (most?) autistic children, is hesitant about change and doing things differently. He’d like me to always wear a certain brown and pink shirt, and Jim to wear a certain pair of black shoes with black socks; going to the grocery store means he has to get sushi, whether or not he might want to eat it. Transitions can be hard precisely they involve a change, a shifting from one activity to another.
Things have been different around here today and will be until Saturday night late. Jim left this morning for a conference at a large Midwestern university whose initials are ND and it’s been me putting Charlie on the schoolbus, and it just ain’t the same.
I do think that changes in the usual steady pattern of things are good for Charlie and for all of us. There are changes happening to Charlie himself: He is starting adolescence and will be going to middle school next year. He’s got a new bike and is still getting used to its size, power, and the two gears on the handlebars. He still asks for piggy-back rides but his days astride Jim’s back are definitely numbered. We’ve moved eight times since Charlie was born, mostly to be in places that could provide him with what (we hoped would be) the best education; we’re renting the condo we currently live in, and may be moving again (for one thing, we’re on the second floor and an energetic, exuberant, growing boy jumping can send out seismic vibrations, duly noted by the nice retired man downstairs).
Nine years ago, Jim was also at a conference at the same large Midwestern university. In fact, he was there to speak about what was then a new research project—a study of the New York/New Jersey port and the 1954 movie On the Waterfront—and which, due to unforeseen circumstances (Charlie’s being diagnosed with autism in July of 1999, which prompted our numerous moves around the country) has taken longer to complete than anticipated.
Life happens, right?
Back in the late winter and early spring of 1999, it didn’t seem like anything was happening with Charlie’s development. He didn’t know what his hands or any parts of his body were, or (it seemed) his name. An older, no-nonsense but kindly under the surface doctor had said the words “neurological” and “brain” and that she hoped that ear tube surgery would help with Charlie’s non-existent language ability. At this time, Charlie had already been evaluated by the Saint Paul Public Schools for some kind of delays and Jim and I were in that quicksand state when you know in your heart what the diagnosis is, but you have yet to connect the word to your child. And, I was in my first year of my first job as an assistant professor of Classics on the tenure track, and we had no family or friends (aside from my work colleagues) in Minnesota.
Jim still remembers, with a sharp pang, returning back to St. Paul from the conference in 1999 and Charlie showing him no response at all. I remember how I drove Charlie in our old forest green Saturn down Summit Avenue and glanced back at him gazing somewhere, and how I wondered, what if there’s something really really wrong?
Things really do change.
Jim’s book is done. I’m back teaching Latin and ancient Greek at another college, now in northern New Jersey, and I’ve been writing my own book to make sense of what has happened to us. Charlie can talk, ride a bike, swim, play the piano, play the cello, make himself a simple meal, brush his teeth, bounce-catch a basketball. He can tell me (as he did this evening when we pulled up into the parking lot of the YMCA) “no swimming” and, in a change of plans, go on a walk to the grocery store where—very unaccustomed for Charlie—-not get a pack of sushi. He can do things differently; he can change.
And when Jim comes home on Saturday night, I know one boy who’s going be saying a lot of “hi Dad!” ’s.
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POSTED IN: Adolescence, Charlisms, Family, History, Parenting, Travel
17 opinions for Change and Change Again
NIksmom
Apr 18, 2008 at 7:30 am
This is a wonderful reminder that things CAN and DO change even with our kids. If we’re lucky and wise enough, we’ve been watching it happen before our very eyes. Sometimes, though, it seems like it’s miraculous doesn’t it?
Here’s to a joyous homecoming for Jim…and all of you.
Karen
Apr 18, 2008 at 10:37 am
What a lovely post. Sometimes it’s so hard for us to be patient, but our kids do progress and change all the time!
Jyll
Apr 18, 2008 at 10:56 am
I just came across your blog and I wanted to let you know how much I appreciate seeing other parents personal stories. I feel all alone sometimes. My Zachy is high functioning but definately does not like change. Although I find it helos if I warn him plenty of time in advance. Come read about him on my blog.
VAB
Apr 18, 2008 at 12:03 pm
It’s a nice coincidence that I was just studying the idea of impermanence from a Buddhist perspective and now you bring this up and it’s interesting to make the connection. Buddhist’s believe that one of the biggest causes of stress out there is the natural tendency of people to want things to stay the same. They also believe that we can become more relaxed and happy by changing our thinking about change.
I recently taught our guy some very basic meditative breathing as a way of dealing with anxiety, maybe its time to start talking about change (samsara).
I wonder if anyone has ever looked into whether certain religions and philosophies, or certain aspects of all religions and philosophies are preferred by autistic folks.
peony
Apr 18, 2008 at 12:46 pm
This is such a nice post. It gives me hope for the future. I completely agree with you. Our children do change. Their skills do improve as they get older.
liquid zeolite
Apr 18, 2008 at 1:40 pm
How about this change, start treating your child with non Rx drugs and with natural supplements! How about ALA for starters. You will notice a difference in your child right away. Just one of MANY natural cures for the symptoms of autism worthy of your consideration. Here’s a good write-up on ALA:
Although your body can synthesize L-carnitine in the liver, it depends on outside sources (meat being a primary source) to fulfill its requirements. This can present a problem for vegetarians since L-carnitine performs several key functions in the human body. For one, it can improve the functioning of the immune system by enhancing the ability of macrophages to function as phagocytes. And it can improve the functioning of muscle tissue. In fact, it has been shown to increase running speed when given prior to exercise. It also plays a major factor in cellular energy production by shuttling fatty acids from the main cell body into the mitochondria (the cell’s energy factories) so that the fats can be oxidized for energy. Without carnitine, fatty acids cannot easily enter the mitochondria.
There is, however, a specialized form of L-carnitine known as acetyl-L-carnitine (ALC) that is often deficient even in meat eaters and that performs virtually all of the same functions – but better. For example, in terms of cellular energy production, in addition to shuttling fatty acids into cell mitochondria, ALC provides acetyl groups from which Acetyl-Coenzyme A (a key metabolic intermediate) can be regenerated, thereby facilitating the transport of metabolic energy and boosting mitochondrial activity. But beyond that, the addition of the acetyl group makes ALC water soluble, which enables it not only to diffuse easily across the inner wall of the mitochondria but also to cross all cell membranes more easily. In other words, ALC reaches parts of the body where L-carnitine cannot go. In particular, ALC readily crosses the blood/brain barrier, where it provides a number of specialized neurological functions. For example, it can:
* Facilitate both the release and synthesis of acetylcholine, a key brain biochemical.
* Increase the brain’s levels of choline acetylase.
* Enhance the release of dopamine and improve the binding of dopamine to dopamine receptors.
* Protect the neurons of the optic nerve and the occipital cortex of the brain.
In addition, studies have shown that acetyl-L-carnitine can inhibit the deterioration in mental function associated with Alzheimer’s disease and slow its progression. Part of this is a result of its ability to shield neurons from the toxicity of beta amyloid protein. As a result:
* ALC improves alertness in Alzheimer’s patients.
* Improves attention span.
* And it increases short term memory.
Through its action on dopamine (a chemical messenger used between nerve cells) and dopamine receptors, ALC seems to play a major role in preventing and/or minimizing the symptoms of Parkinson’s disease.
* ALC enhances the release of dopamine from dopaminergic neurons and improves the binding of dopamine to dopamine Receptors.
* ALC retards the decline in the number of dopamine receptors that occurs as part of the normal aging process and (more rapidly) with the onset of Parkinson’s disease. In fact, many researchers believe that Parkinson’s may be caused by a deficiency of dopamine.
* And ALC inhibits tremors.
And acetyl-L-carnitine may even play a role in helping with MS.
* ALC inhibits (and possibly reverses) the degeneration of myelin sheaths
But most of all, ALC just helps slow down the aging process of the brain.
* ALC retards the inevitable decline in the number of glucocorticoid teceptors that occurs with aging.
* It retards the age-related deterioration of the hippocampus.
* It retards the inevitable decline in the number of nerve growth factor receptors that occurs as we age.
* It stimulates and maintains the growth of new neurons within the brain (both independently of Nerve Growth Factor (NGF) and as a result of preserving NGF) and helps to prevent the death of existing neurons.
* ALC protects the NMDA receptors in the brain from age-related decline.
* ALC inhibits the excessive release of adrenalin in response to stress and inhibits the depletion of luteinising hormone releasing hormone and testosterone that occurs as a result of excessive stress.
* And ALC enhances the function of cytochrome oxidase, an essential enzyme of the Electron Transport System.
The mind boosting effect of acetyl-L-carnitine is often noticed within a few hours — or even within an hour — of supplementing. Most people report feeling mentally sharper, having more focus, and being more alert. Some find a mild mood enhancement. More specifically:
* ALC improves learning ability along with both short term and long term memory
* It improves mood by 53%.
* It both improves the quality of and reduces the need for sleep.
* It improves verbal fluency.
* And ALC improves hand eye coordination by some 300-400%.
acetyl-L-carnitine helps flush lipofuscin from the body — especially from the brain.
What’cha think doc?
Kristina Chew, PhD
Apr 18, 2008 at 1:43 pm
@liquid zeolite,
tried a number of things with not so good results. so I don’t think so. though it’s true, if we lived out in the Bay Area where my family is from, Charlie would have been give various mixtures of Chinese herbs to drink over the years. but thanks!
liquid zeolite
Apr 18, 2008 at 2:24 pm
Okay, just a thought. BTW, have you seen this autism parent study before:
http://www.autism.com/treatable/form34qr.htm#drugs
Input?
Kristina Chew, PhD
Apr 18, 2008 at 4:29 pm
Yes I have, thank you. That study being from the Autism Research Institute, which is closely associated with biomedical treatments and of course with the Defeat Autism Now! conferences and protocol, I’d think it would be good to know more about the parents and their views about autism causation and about autism more generally.
Not every medication we’ve tried for Charlie has been helpful—-some have been decidedly less than that. Through trial and error, we’ve found a combination that seems to help. Very best—-
Autismville
Apr 18, 2008 at 4:47 pm
Your post gives me hope. Thank you for that …
wskrz
Apr 18, 2008 at 6:30 pm
We’ve had some issues with change with our little guy and sometimes he totally surprises us. He balks at the change of clothing seasons (long sleeves to short sleeves) but sometimes seems to thrive on the big changes, like trips. And sometimes it’s the trips that have us thinking that we’re going to be in for trouble when it’s often the complete opposite.
Thanks for this, Kristina. It’s good to hear that things do change, oftentimes for the better. It’s especially good to hear on rough days.
Bink
Apr 18, 2008 at 7:16 pm
Thanks for this post. Several sentences leapt out at me. Like, “the quicksand state when you know in your heart what the diagnosis is, but you have yet to connect the word to your child.” I remember that so clearly. It was a very hard time.
As the expression goes, the only way out is through.
S.L.
Apr 18, 2008 at 9:36 pm
Another lovely post. I think one of the biggest myths about autism, is that autistic children don’t change, don’t make progress (unless they get ‘treatment’ for ‘recovery’). So many people do not realize that autistic children make progress, at their own pace and their own pattern. It has been the greatest gift watching both my girls blossom and change each year. With my youngest, it’s especially been a gift that I cherish every day.
Leanne
Apr 19, 2008 at 10:21 am
I ditto what S.L. said.
I just wrote a post about a different kind of change. But back to your post. Patrick definately likes routine. Certain changes are ok and others are not. But of course he can’t tell us which are which. Transitions are difficult and I’m sure he’ll be very vocal when we can no longer carry him to bed at night.
I’m sure Jim will be very happy indeed to get those ‘hi dad’s’.
Kristina Chew, PhD
Apr 19, 2008 at 10:44 am
Thanks for all the kind words!
One of the scariest things for me when Charlie was just diagnosed and we were stumbling around trying to figure out what to do—-trying to drag ourselves out of the quicksand, thank you for noting that, Bink——was what would our day to day life be like? Would we always be stuck in the house or in our yard — would those be Charlie’s limits? I’ve been a reader all my life and have always spent a lot of free time with my head in a book: What would Charlie do all day without reading’s pleasures and lessons?
I guess these wonderings are a sign of my own limitations and limited experience. I’ve been fortunate that he’s helped me to walk into ones I would have been scared to try, without him.
We Go to the Met
Apr 20, 2008 at 2:39 pm
[…] and to one that is not a designated children’s museum—and, of course, Jim was still out of town. There was some hollering and the usual looks: We just kept moving […]
Bonnie Sayers
Apr 23, 2008 at 8:08 pm
Nice to read of all the things that Charlie can now do for himself and by himself. Next month we are doing swim lessons for Nick since it has been hard to do with Matthew in tow, but once state testing is over that is on the list and then seeing an Orthodontist for braces and he needs another x ray to check into scoliosis.
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