Friday, August 29, 2008
Baby C, on the other hand, has never hugged me. He is dealing with some developmental anomalies that are probably causing some sensory integration issues that make my kind of hugging not so pleasant for him. It is also possible that my hugs are too unpredictable in their occurrence or intensity. Perhaps my voice or posture is not copacetic to his way of thinking. Whatever it is, its not working for him.
That's not to say he doesn't hug in his own way, though. He does.
When I want to have some time with C, or just let him know I'm interested in getting down to his physical level, I kneel and spread my arms out wide. This is a fairly universal gesture, I think. He will notice me, and cruise over to me. However, once he is approximately arm's length he will stop, rotate in place until his back is to me, and take tiny backwards steps until he backs into me. I, in keeping with the routine we have developed, will squeeze him by pressing his shoulders towards each other, will apply pressure to his crown, temples, and forehead, and will do some other deep pressure stuff and joint compressions as long as he will let me. Its not a typical hug, but C is not a typical kid.
Tonight, though, for the first time, I received a Full Frontal Hug! And once he decided it was okay, he grabbed on tight and we were able to hug for a good 12 or 15 seconds. Once I put him down, he motored right past me as if nothing had happened. But he and I both know that a small barrier has been broken. Next time I kneel down, he will have options. If he wants to back into me, then fine. But I'm ready for another Full Frontal Hug whenever he is.
And again I am reminded of one of the wonderful aspects of parenting. Its the little things - the things that no person outside the immediate dyad could ever know - that makes the parent/child relationship so special. Things like the Full Frontal Hug.
Wednesday, August 27, 2008
This article tells the story of 19-year old Evan Delaney Rodgers and her quest to earn a spot on the Carlsbad, CA City Council. She is running her campaign absolutely free of any donations from anyone, an expects to do it all for less than $1000. Oh, and she has Asperger's Syndrome.
From the story:
“If you meet a person with autism,” she likes to say, “you've met one person with autism. I'm not like Rain Man, not like Einstein. I'm not like Thomas Jefferson.” (It's been speculated that Einstein and Jefferson, socially remote geniuses, had Asperger's.)
In her campaign release, Rodgers speaks with clear-eyed candor about Asperger's:
“I wouldn't be where I am today if I were neurotypical because I would have been interested in social things. Having a little autism helped me achieve my goals and not miss what most people thought I was missing out on. I'm not really 'driven' in the sense of being a wound-up over-achiever – marching to my own drum just happens to cover a lot of ground.”
What a great line. I need to remember that one as my boys grow older so I am armed with some sage, fatherly advice. And I need to remember that I got it from a 19-year old girl.
I don't live in Carlsbad, and therefore don't have a vote in that election. But if I had, I bet you can guess who I'd be voting for.
Rodgers for City Council!
Tuesday, August 26, 2008
Let me begin by saying that the operational aspect of this is soooo much easier than last time. When J was diagnosed in 2004, it took several months for us to get our bearings. I'll never forget leaving the hospital that day. Being told that J is autistic, then being handed a packet of information/local contacts/agencies, and being shown the door. At that time, I knew nothing about autism. I wrote about the drive home here.
This time, the feeling of disorientation is there again. But it is rooted in different lines of thought. Now we are very familiar with what to do, and what not to do. We're not hitting the panic button as before, nor are we organizing our family and friends into a quasi-military command structure in order to "combat" autism or "defeat" our family's new circumstance. No, we are much more accepting of the inherent good and not-so-good that accompanies the effort to raise an autistic child. More importantly, we are acutely aware of the challenges - moment by moment, day by day - that are facing our little guy. I think we can do a better job this time of balancing his needs with trying to promote the most positive outcome in overcoming some of the disabling aspects of autism. And, unlike before, he and we have a role model for success in the first few years (his older brother). And we already have a great support-framework in place (a very supportive family, real-life friends on and off the spectrum, numerous professional contacts, and an immensely supportive online community who have already provided staunch emotional support accompanied by personal anecdotes and great advice). Let me take this opportunity to thank each of you who commented on my last post announcing baby C's diagnosis, those who felt supportive but did not or could not put their thoughts into words, and those whp sent personal emails. All messages were read, digested, and appreciated.
So that leads me back to, What's Next?
In a great coincidence, the answer to that question came in a peer-reviewed, published paper approximately 10 days prior to C's diagnosis at Children's Hospital.
I cannot link you to the full paper, but here is the abstract as listed on PubMed.
The study is titled "Properties of supportive relationships form the perspective of academically successful individuals with autism", and it was authored by Dr. Jodi Robledo and Dr. Anne Donnellan, both of the University of San Diego Autism Institute. If you need more info on the USD Autism Institute, simply look at the Home Page of the Autism Hub, and you will find them listed under "Autism Hub Friends". Or, here is a direct link.
The really important aspect of this paper is that, by interviewing autistic adults, the authors established 6 factors that were deemed as being essential to their success in building relationships. It is extremely gratifying to me to see researchers intentionally positioning autistics as a primary source of experiential information, and basing their findings on these experiential factors. This is an unfortunately rare circumstance in autism research today, and the results are - to my way of thinking - all the more valuable as a result.
Before I discuss the findings and their relevancy in my family's life, a quick note about the participants. All 5 participants are young adults who have been academically successful. 3 of the 5 are non-speaking and communicate through typing. I have personally met three of the five participants, and will attest that their autism-related challenges are as significant as a researcher is likely to find.
The results of the study essentially consist of the responses of these 5 participants, and the translation of these responses into 6 categories. The participants were asked to identify 2 to 4 individuals with whom they had a supportive relationship, the definition of supportive being left up to the participant. When the data - collected via face-to-face interviews, email correspondence, published documents, public broadcasts, and phone interviews - were analyzed, 6 major properties emerged as being essential components of a supportive relationship:
SHARED VISION OF INDEPENDENCE
THE PRESUMPTION OF COMPETENCE
Perhaps this list struck you as you read it for the first time in the same way that it struck me.
And what struck me is that it is nice to see some research-based verification of that philosophy that I have already adopted. Anyone who has spent any time browsing the Autism Hub will agree that these properties are discussed regularly, in detail, with enthusiasm, and are universally embraced as being essential components of autism "acceptance" (for lack of a more efficacious word).
So as we move forward into building a relationship with our second autistic son, we will be keeping these things at the forefront of our minds. There is no need to reinvent the wheel, here. What is called for is to listen to those who have come before (in this case, autistic adults) and emulate that which has been shown to be effective.
THAT'S what's next.
Thanks to Drs. Robledo and Donnellan for their work on this study.
Robledo JA, Donnellan AM
Intellect Dev Disabil. 2008 Aug;46(4):299-310.
Friday, August 15, 2008
Today, my youngest son was diagnosed with Autism Disorder.
C is 19 months old, so the diagnosis is "provisional". This means that his "label" may change (within the ASD umbrella) as he develops over the next year or so. But the diagnosing clinician, who has assessed around 1,000 kids during her career, left no room for doubt as to whether or not he is on the spectrum. Both the results of the ADOS and her clinical experience paint a very clear picture.
What is not so clear, and what is so difficult as a parent of a child with autism or any number of other developmental challenges is what C's prognosis looks like. I have spent a lot of time on this blog writing about Positive Outcomes, and I can't help but dwell on the mercurial nature of that subject on the day my son was diagnosed.
Of course, we knew this about C before he went to Children's Hospital today. We knew, but we didn't know, if you know what I mean. We have seen all kinds of indicators over the past 6-8 months. At the same time, we also saw things that would indicate he is not autistic. What we, as parents, lacked is the clinical experience and the lack of bias that a professional can provide. For this reason, we have been counting the days to August 15 so we could receive a confirmation or denial of what we had been observing.
I've got some more thinking to do before I write much more on this. Feel free to comment any way you'd like on this - I welcome your thoughts and insights at this time.
Tuesday, August 12, 2008
Though it could be, considering the title.
Instead, I must warn you that this is an entirely non-autism-related post and holds absolutely no scientific value or journalistic integrity.
When Animals Attack #1
My family is technologically challenged. Though I have learned my way around blogger, I am pretty much a rube in regards to all other things electronic. Oh, to be an electronic guru like my friends Glynn or Kev! No such luck.
So when I booked the install appointment for DSL (we currently run satellite internet due to our semi-rural location and resulting limited options), I just knew it would not go well. In the week leading into the appointment, we had one TV go down, baby C dropped our digital camera in the pool and thereby destroyed that, I found that many of my most recently downloaded songs are MP4 format which will not play in our little "gemstone" pseudo-Ipod thing, my wife's cell phone shuts itself down when she tries to dial out, and my company's servers are full and requiring a PowerVault for expansion (very expensive). DSL must run through phone lines, as does our satellite TV and our alarm system. Though I was assured these would not conflict, it took 3 hours of a tech being in my home to verify what I knew already - that we are living in the technological equivalent of purgatory.
During the Tech's visit, my wife noticed the dogs barking excessively on the back patio. When she went to investigate, she noticed the sound of water running, or spraying. Upon closer investigation, it was not water ... it was a rattle ... Or, to be more specific, Rattlesnake! After she hollered for attention, I helped her drag the dogs in the house (we have really big dogs and they really wanted to play with the snake) and I prepared myself to do battle with the leviathan.
Okay, as an aside, I really don't like to kill snakes. But Rattlers are territorial(they will return to the same spots repeatedly), and I happen to also be territorial (I return to my home each night). It is my responsibility to; a) protect my children from harm, and b) not kill myself in the process if it can be easily avoided. This means my options - since I have no way of picking up and removing a rattlesnake - are limited. I can't let it get out of my sight and wonder every moment if my kids or dogs will encounter it, so I have to kill it. To spare you the details, I accomplished my task and am feeling not very good about it. I am currently loking for a snake-catcher so that next time I can remove the snake instead of killing it. Maybe I should have called this post, "When Humans Attack".
The point here is that all of this happened while the DSL installer was here. He kept peeking outside to check on my raging battle with the snake.
When he left ... hours later ... defeated by the curse of the D family's electronics ... I told him, "Hey, lighten up. Its not your fault. This install was doomed before I even ordered it! You see, when we try to upgrade technologically around here it not only doesn't work, but we also get attacked by wild animals!"
When Animals Attack #2
You'd like to think the story is over at his point, right? Ummm, no.
The snake thing happened last Wednesday. Fast forward all of 2 days, and my wife has the boys down by the pool. My wife is an animal husbandry aficionado, and has not yet learned (as we cynics have) that so-called "lesser" animals can be safely ignored. As a result, she was rescuing a drowning bee from our pool. Yes, picture an exhausted, drenched bee being mercifully lifted from the cold, deathly, chlorinated clutch of the pool by L's graceful hands. Then picture the little ungrateful bastard stinging her! (Sorry Andrea for flinging epithets at the bee, but read on prior to passing judgment please).
To shorten a long story, by the next day (Saturday) her finger was turning black and her hand was swollen to a painful point. I took watch over the boys while she went to Urgent Care. She returned 5 hours later with a splint on her hand (extending up to her forearm), gauze on her opposing wrist to cover the IV tube they left in her arm. You see, she had undergone a severe reaction to the bee sting and required IV antibiotics, and she had to return the next day for another round. They had to cut off her ring due to swelling. Now she appeared to be some android-mom.
So this was a big deal! And it was not directly related to any technology installs or upgrades! Unbelievable.
She is ok now, but apparently this reaction will get worse with each ensuing bee sting. And never mind that our middle son, T, also reacts strongly to bee stings, and that bees hate T. They have some sort of bee-nation vendetta on the poor kid, and typically harass him at every turn. He's had twice as many bee stings in 5 years as I've had in my life, poor kid. So we are planning to move to Nome, Alaska where it is too freakin' cold for bees to live.
When Animals Attack #3 - Prehistoric Version
Endless thanks go to Grandma and Poppa for taking our two oldest sons to Colorado for a week-long adventure this summer. Little did we know that our pattern of animal attacks would also occur there!
Monday, August 11, 2008
I've missed you, readers - all 17 of you!
You may or may not have noticed that I have not been around much lately in the blogosphere. I was on my summer vacation - a respite from blogging and debating and advocating and conferencing and all that.
Not that it has been quiet - far from it!
I have been a keen observer, though. All kinds of things have been happening this summer in the autism communities. Some I have silently cheered, others have left me cringing and wondering when the madness would end. I do rest assured that the efforts I see on an ongoing basis in the more stable, sane corners of the world of autism are working to the benefit of my son and many others like - and not so much like - him.
Taking a step back for a while has also helped me to realize the importance of the message we try to get out here on the Autism Hub. People need to hear us - autistics, parents, professionals, researchers. When I see the sheer volume of oppressive or misguided messages that exist out there, I am resolved to continue to speak to the issues.
Now for a mini-Snippet (this becomes Snippets 3.0):
About an hour ago, J was rooting through the cupboard looking for something to eat. I peeked in there and noticed a bag of sunflower seeds - one of my favorite snacks. I buy the shelled type, as I hate shelling them myself. I grabbed about 4 or 5 seeds out of the bag and encouraged J to try some. Anyone who knows J also knows that he is extremely limited in his diet, and has very powerful sensory reactions (gag and vomit) to a huge range of textures. This is something we have only last week received funding approval to address via OT. But as he matures he has at least shown a willingness to try new things.
So I asked him to try the sunflower seeds, and promptly put these 4 or 5 on his tongue before he could object. I saw the familiar facial expression change, and he began to retch. He spit out the seeds and backed away. Knowing how these things go, and constantly feeling guilty for having to push and push for him to expand his diet in the face of real challenges, I told him I was sorry.
"I ... I just .... don't want them to grow in my belly!"
Riiiiight. Sunflower seeds.
Just when I think I know why he's doing what he's doing, I am proven wrong again.