Tuesday, December 27, 2011

How My Universe Unfolded

As this year comes to an end, I am reminded of how worried I was this time, last year, about all the changes that the coming days would bring.  Holly had moved into her own apartment, the twins would be moving out shortly, and Olivia was going to be starting Western Michigan University in the fall.  I was afraid of  letting go of the doorknob, as my universe unfolded, because I felt unprepared for what lay ahead on the other-side of the door, and melancholy about the love and laughter I would be leaving behind when I closed it.  I found myself standing on unfamiliar ground for the first time since I had started my family, and I felt very unsure of my new place in the world. Well, I am delighted to say, for all those facing similar prospects this year or in the future, that the universe did unfold, exactly like it was supposed to.
What I discovered over those next few months is that my relationships with my daughters did indeed change, but the changes that followed were really quite wonderful!  At first, I could only notice how lonely our house felt with Dave and I wandering around its empty rooms; the quiet accompanying us, wherever we went.  I had less work to do, but now, that didn't seem so important.  Slowly though, as the girls settled into their own new lives, Dave and I found ourselves getting many delightful phone calls from them, filled with all the news about the direction those lives were taking them in. I began to get many invitations to join them for lunches or dinners, and when I did, I found that I was no longer speaking to the little girls I raised, but, rather, to the grown women that were the result of all that raising.  I could just listen and enjoy, rather than advise or rebuke.  These women were no longer children I had to parent, but more like friends that I could just enjoy spending time with, and, quite often, they refused to let me pay for my meal, as well!! 
The distance between us seemed to give them a new perspective, too, and they seemed to view Dave and I much differently, than they had in the past.  They had always been appreciative of us, but now they were in a position to demonstrate that appreciation more, and they did so with great frequency.  Whenever Dave and I had health issues they would adjust their schedules to drive us to appointments, or, following my back surgery, pick up Olivia from college. Their visits home, especially when they would spend the night, were filled with happiness over a home-cooked meal, which, despite my obvious lack of culinary talent, would somehow taste wonderful to them. They each loved their new lives, but they also missed their old ones, and I found myself basking in the glow of their affections.  On those most delightful of all occasions, when they would all spend the night at the same time, the warmth from having the whole family together would seem to linger for days.  It was better than I could have ever imagined.
I realize now that I had mistaken the dependency of my children with their love for me, and that, in actuality, those are two very different things. I underestimated the children I had raised, and I think, perhaps, I had underestimated my own value to those children.  They are the results of Dave's and my own finest efforts, and I see pieces of the best of each of us, sparkling in them, like starlight on a summer night, whenever I look at the women they have become.  Had I realized all this last year, rather than worrying about what would happen when I closed that door, I would have embraced the opportunity to see what was on the other-side, much sooner...I have to remember that.
So here's to a New Year, in which you each let go of your own doorknob, and allow your universe to unfold.  I will leave you with those poignant words from Max Ehrmann in his essay "Desiderata," in hopes that we will all remember to keep them in mind, during those times we are facing change in our lives, during the coming year.

"And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.
With all its sham, drudgery, and broken dreams,
it is still a beautiful world.

May you each have a Blessed and Happy New Year!

Thursday, December 8, 2011

Dear Coach Schwartz....

Dear Coach,
I would just like to begin by thanking you for all that you have done with "our" Detroit Lions, this year!  It has been so much fun to watch our boys, especially early in the season.  I have to imagine that the last few games have caused you some concern though, and rightly so...but don't despair, because I can help you!!!!  I work at a preschool, so I deal with these kinds of behavioral issues every year.  It's an easy fix, and I am more than happy to share my expertise in this area with you.  It might be necessary for you to make a few minor adjustments to the advice I provide, but otherwise it should work as well for you, as it does for us!  For example, it is important to maintain direct eye-contact when speaking to the individual who is misbehaving.  In our preschool that means we must crouch down to look our "littles" in the eye.  Obviously, if I were to apply the same principles with your boys, that would mean I would need to stand up on a chair to do so, but, other than that, I think the same rules should work.
In a gentle, but firm voice you must remind your guys that it isn't okay to hit someone just because they take away one of their toys or don't play the way that they want them to.  They need to use their "words."  Tackling someone the correct way is perfectly acceptable, of course, but stomping someone or pushing an official is out of the question.  It is never okay to hit someone, because you are feeling angry or frustrated.
Let them know that if they cannot follow this rule, then they will have to remove themselves from that area of play, until they are ready to do so. You don't want to keep piling on those penalties! Be firm about this, because if you are inconsistent  about the rules the whole class/team will notice, and you will lose all of your credibility with them.  If they should throw a tantrum, as sometimes happens, you must simply tell them that you cannot address the issue any further, until they can compose themselves...you cannot afford to have personal fouls or unsportsmanlike conduct.  Don't be afraid to use big words like "compose" with them.  If they don't know what it means, just explain it to them.  I never talk down to my littles.  I have always found that it is better to keep your expectations high, and allow them to rise up to them, rather than to lower yours, and miss out on that window of opportunity for a teachable moment.  This is also a subtle way to convey your respect for them as individuals, as well as for their intelligence.  Make sure that you apply these rules equally amongst all your kids, because if you allow one to get away with it, then your whole class/team will descend into chaos!
Finally Coach, never forget that you lead by example.  If your kids see you handling your anger with aggression, then they will do so, as well.  None of your words will mean anything if they think you are a hypocrite.  This might be particularly helpful when you are dealing with opposing coaches after the game...if you show a lack of respect for authority, then your players may show you the same!
It's really that easy, Coach.  The great thing is that you don't have to repeat all this over and over if only you follow through, firmly and consistently, the first time.  Plus, you still have plenty of time left in the school year, oops, i mean season, to get things back on track.  Then you can concentrate on YOUR area of expertise....how to win a football game!!!!
Best of  luck with our boys, and please tell them it has been a pleasure watching them this year!
Amy Valente

Friday, December 2, 2011

Tommy's Story- A Young Man Battling Autism

This past Thanksgiving, my family was invited, once again, to my sister-in-law Maria's home to share our holiday meal with her husband and their five children. My mother-in-law and father-in-law also attended, and since I did very little of the cooking, our meal was, of course, exceptional. As fine as the cooking always is though, I find the greatest pleasure in spending time with those I love so deeply, but whom I seldom see often enough.
Lives are busy, and, in Maria's and Bob's case, it is extraordinarily so. Besides the demands of raising a large family, their eldest son, my Godchild Tommy, has Autism, and as anyone whose life has been touched by this condition knows, an enormous amount of love and energy is required to care for a child who suffers from this. He is 22 years old now, and his parents have been relentless in their efforts to help him, in any way that they can, since the day he was first diagnosed. Their tireless undertakings seemed to be rewarded though, and until last November they had managed to provide him with a life, both full and happy; suddenly and unexpectedly that all changed.
Tommy, who is non-verbal, and therefore, unable to shed any light on what was troubling him, began to behave in ways totally unlike how he had behaved in the past. His normally contented disposition changed, and he became aggressive, lashing out at others, both at home and at school. He started to engage in violent behaviors which resulted in self-injury, such as striking his face until it became battered and bruised. He experienced a dramatic loss in weight, as well as a change in his sleep patterns. Activities that once provided him with pleasure, no longer did so, and his world, already limited by the ramifications of his Autism, began to get smaller and smaller.
Driving in the car, for example, an activity that he had always enjoyed in the past, suddenly began to cause him unrest, and he would attempt to get out of the vehicle, or wrench away the steering wheel from his mother, as she would drive. The vocational school he attended was forced to call the police for assistance, to take him to the hospital, when he began to act aggressively towards other students or staffers. On more than one occasion it took upwards of four grown men to restrain him as he struggled; someone who appeared to be fighting for his life, for reasons no one else could fathom. He would attempt to escape from his house, at any given opportunity; running frightened, down the street, into yards of strangers who knew nothing of his illness. The family feared for his safety, concerned that he might be struck by a car, or injured by someone who viewed his behavior as threatening. With a deepening sense of panic his parents and siblings sought to find the reasons for whatever had caused these heart-breaking changes, but much to their despair, for the most part, they found little help within the medical community. Although the Hippocratic Oath promises that every doctor will do his utmost to help those who suffer, it seemed not to apply to a young adult who was Autistic, non-verbal and combative. Whether their hands were tied by worries of malpractice, or their hearts were closed by a case too difficult to diagnose, they showed little compassion to a family in desperate need of answers.
After being shuffled back and forth between hospitals, and from doctors who found it easier to refer the family to another specialist, rather than to look harder for the answers themselves, Maria made a very fortunate phone call to a pediatrician Tommy had seen when he was younger. Although Tommy was now an adult, the doctor agreed to see him, and it was this learned man who finally gave Maria the first diagnosis that made any sense. He said he suspected Tommy suffered from PANDAS.
The Behavioral Neurotherapy Clinic describes the condition in this way:
"Although rare, PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. What does all that mean? Basically, it means that when the body's defenses are trying to attack the Streptococcal bacteria causing a sore throat, there is some degree of mistaken identity and it also attacks some parts of the brain.
The autoimmune attack is thought to occur on closely related parts of the brain, causing a range of behavioral and emotional problems. When first discovered PANDAS was linked to obsessive-compulsive disorder, Tics and Tourette
 syndrome. Mostly because these abnormal behaviors are overt and easily recognized.
Tics can be uncontrollable movements, such as eye-blinking or shoulder-shrugging, or automatic noises such as throat clearing, grunting or saying certain words repeatedly. More recently PANDAS has been associated with a wider range of related behaviors. Affected children can have any combination of the following symptoms:

Cognitive inflexibility, difficult to reason with, as if stuck on an idea,
Obsessive/repetitive/compulsive argumentative behaviors,
TICS (repetitive vocalizations of body movements), 
Tourette syndrome, 
Attention deficits and oppositional/defiant behaviors."
When Tommy was tested for strep titers his exceeded 3000. The normal range is generally considered to be between 0-250, although some labs go as high as 400; Maria's results were 7.
Because his condition has probably been ongoing, judging by the results of his strep titers, restoring Tommy's health may be more challenging than it would be had his condition been recognized early. Additionally, since administering medication to him or getting blood work done is so difficult the road ahead is still a long one. The pediatrician who first suggested Tommy had PANDAS was not familiar enough with the condition to treat him, and the few doctors who are willing to help are located out-of state. Yet, at least there is hope again, as distant as it may be.
I write this, with the permission of my sister-in-law who graciously allowed me to share her family's story, in the hopes that it might serve two purposes. First, to educate those who read it as to the existence of PANDAS, and also to draw awareness to the enormous gap in medical care relating to adults with Autism. When Tommy was first diagnosed I had never even heard of the condition; now, with the advances made in diagnosing it, Autism has become painfully familiar. Although it is encouraging to see very young children receiving the early intervention that can improve their lives so dramatically, the absence of that same kind of attention for adults with Autism is truly disheartening.
It is my sincere hope that some good might come from this story; that today you might be touched by the words I have put to paper for a boy who is unable to say them himself. How unimaginably lonely it must be to live in Tommy's world....it shouldn't be made harder, because he can't receive the medical care that the rest of us take for granted.