How Much Is Too Much When It Comes To Your Child’s Treatment?

I wanted to share something with you that I believe every loving, involved and advocating parent struggles with when it comes to the care and well being of his autistic child. I know that many of mine and my wife’s discussions revolve around this, and that it seems to be a recurring topic naturally in our household. My goal today is just to share a topic that I believe many families living with autism struggle with and to reassure you that you are not alone if you have experienced similar. I am eager to hear your experience.

What I want to discuss in a broad context is that of deciding the proper treatment and care for your child’s autism.

Instead of discussing the different kinds of treatment available today, and whether your family subscribes to researched-based, scientifically-based or perhaps other various styles and methods of treatment options currently available, I want to hone in on the specific, secondary effect that the pursuit of any treatment option has on the family dynamic.

I will start with these questions:

1) How often do you and your spouse discuss if the treatment method you are using is actually working for your child?
2) If you do have this discussion, has it ever gotten heated?
3) Have you made major life changes or decisions such as move your family to a different state, change jobs, move to a different school system, quit a career, get a second mortgage, max out credit cards, take out loans, borrow from friends and/or family, take on a second or third job in order to provide your child the BEST and MOST amount of treatment that you could possible provide?
4) Have you ever had to put the needs of your other family members or children second to the treatment needs of your autistic child?
5) Have the treatment needs of your autistic child created difficult logistic problems in your household when it comes to things like travel to and from therapy, babysitters, having to call in sick from work?

I have to be honest that my wife and I have struggled with just about every question above? Who wouldn’t when you love and want the best possible outcome in life for your autistic child, right? As the primary advocates and caregivers for our child didn’t we agree to a “whatever it takes” attitude in pursuit of that care?

My main question for today in lieu of an answer is: How much is too much?

When do you draw the line? When do you draw that line between your faith in a perfect order of things in life and the secular works you attempt in getting treatment for your child? At what expense do you pursue treatment options at the expense of your marriage, health, emotional well-being and the other members in your family? Does your family “struggle” with autism, or does autism just “live with your family?”

I am hoping to get some feedback on this from my audience. What are your thoughts on this and why?

In advocacy,

Mike

April is Autism Awareness Month!

I know, I know…you must be asking where we have been over the past few months? Well, I’ll tell you that I redeployed from Iraq safely, PCS’d to a new duty location for my final year of commitment to active duty military, tried to share as much time reintegrating with my wife and kids, and finally, making plans for the future!

I’ll share more details in the months ahead, but we are planning some bigger initiatives for this blog that will go well beyond opining about items of interest surrounding autism. We’re very excited about extending our reach to assist more families in their education, information and inspiration to do more and get more out of their lives!

April is Autism Awareness Month. Please join Pathways In Autism as well as the founders of the Light it Up Blue program, Autism Speaks in supporting greater awareness for the epidemic known as autism.

God bless,

Mike

Real vs Perceived Stress in Life

Stress.

Every family who is raising an autistic child feels it every day. Every military family raising a child with autism may perhaps feel it every hour with the additional stressors of military life. How we handle that stress everyday and having positive, effective strategies to cope with it is very important.

There are volumes of books written about coping with life, stress, anxiety, fear, anger, disappointment, depression and all the other related side effects of stress. I am not going to purport to be an expert on managing the effects of stress. I am far from it. I find myself at times taking out my frustrations from stress in life on my family, co-workers, extended family and friends. It’s certainly not fair, but it unfortunately happens from time to time. I do think though, that I TRY harder than most people to manage the emotions that stress on the family can bring. I know what is at stake if I lose my cool all the time around my wife and kids – especially autistic kids in a family stressed out living with autism. I know that is a big claim to make, but when you have many sources of stress in your life how you handle the by-products of that stress is an daily importnant task. Also important, and what I want to focus very briefly on is discerning REAL stress versus PERCEIVED stress.

Let me ‘splain.

Today I happened to catch the end of the Detroit Tigers and New York Yankees series. It was game 5 and the winner would move on to the next round in the playoffs. It was the bottom of the ninth, at Yankee Stadium, with two outs, and the Yankees are down by one run with Alex “A-Rod” Rodriguez at the plate to save the day with a homer. Can you imagine the REAL stress in that situation! Tens of thousands there live and millions at home with all their eyeballs on you to see if you are going to be the stud or the dud. That is pressure. That is stress. And performance in that kind of situation is extremely difficult and extremely stressful.

Then, moments later, the game is over. A-Rod could not pull it off. The Tigers win! And the television cameras start to pan all around Yankee Stadium to get the reaction from the fans, the ones who expected the Yankees to eventually move on and win the World Series! Why? Because that is what the Yankees do! They win! And the high expectations that all the fans had for their team came crashing down with one final at-bat. What disappointed me was when the camera stood still on one group of fans who were openly weeping and holding their hands to the top of their head. The disappointment must have just been too much for these two ladies adorned from head to toe in Yankee apparel and beads. Now that is an example of reacting to PERCEIVED stress!

See the family who deals with the real daily stress caused by the rigors of autism has REAL catalysts to deal with, and how they react to those very REAL stressors will add to or take away from the success of the family unit. Parents HAVE to handle the stresses in the home with the precision and professionalism of a trained counselor if their emotionally troubled auttie will ever have a chance in life. Our kids watch us closer than we could possible understand. Don’t be fooled by their perceived aloofness. They are watching your behavior and reactions to life more than they ever hear your words. The ladies in the stands are reacting to PERCEIVED stress. I’ll ask you this? Did those ladies have any ability to directly affect the win or loss of the Yankees? Did they Play in the game? Did they coach the team from the dugout? No. They sat in the stands, booed at the Tigers, cheered for the Yankees, probably ate nachos and drank their favorite beverage (or two or three).

To breakdown and cry because a team you were “watching” and “rooting for” is NO cause to openly weep as their was no direct loss of anything of significance financially, maritally, relationally or as a parent – some of the true benchmarks of importance in one’s life. Those two will go home, sleep it off and go to work tomorrow virtually unaffected. Why do people react that way in those situations? It is difficult for me to comprehend that level of fanaticism and emotional involvement in something they have no direct control over. It is perceived stress as there is no direct loss of anything of value if it doesn’t work out. Because they won’t lose anything of true value there is no reason to get all worked up for nothing.

In our life as parents of special needs children we have control over many of the decisions or experiences that happen in our home. Our level of emotional intelligence and ability to decipher perceived stresses from real stress in our own homes is markedly important. A poor reaction to stressors in life will directly affect the family. Mood swings, anger, anxiety, worry and other emotions and behaviors harbored on over time will rub off and negatively affect your spouse and kids. First of all, avoid the perceived stress in life. Your team, or insert silly behavior here _________, isn’t worth the effect the by-product behavior has on everyone around you! Next, when real stress comes, then act appropriately. When life (another nickname for “stress”) happens do you freak out, or do you remain level-headed? When it gets too tough do you hit the bottle, or God-forbid your spouse or children, or both? Do you take it out in other ill, ineffective methods on others? Do you behave in an unhealthy way? If you are reacting to perceived stress – stop it. It’s a waste of your time and blood pressure. If it’s real and you still are blowing it…

Find a better way friend. Seek help. Today. Hit the nearest professional help, your knees, or both – whatever it takes to cope with stress more effectively.

I work on this myself daily, in all aspects of my life and will continue to work hard at controlling my emotional intelligence. It is a fight, it is a battle, but who in your household is not worth your best efforts to be the best example in the home?

In Advocacy,

Mike

The Struggles That Autism Creates For The Family

When I read this and a few related pieces to it, my heart sank. Despite the wealth of the family involved, and despite many unknowns that one has to draw or assume after reading this story, my heart goes out to them.

Our family has endured those very same stresses that autism can bring into the home on occasion. My wife and I are not immune to the heated exchanges that have sometimes occurred in times past. And, we too have felt the heavy battle of lawyer-laden school districts trying to defend their pathetic program offering.

What affected me most, of course, was the centerpiece of the article describing the abuse this poor autistic child endured in the Atlanta Public School system. I shudder to think of the teachers and therapists that our boys spend many hours with weekly, that somehow could easily mistreat our boys emotionally, mentally or physically without our knowledge. As parents we all hope and pray that those who are caring for our autistic kids are doing the best they can, and are doing the right thing. But, how do you really know that is occurring? With an inability to share verbally, or have the cognitive or social understanding to discern when anything is askew how do we know that others are not adding more damage to our autistic children.

I certainly am not one who lives in fear daily, but it is terrible and unfortunate events like this that make you really question how and if you are doing everything to best protect your child. I tend to believe that people are generally going to do the right thing when given the opportunity. I believe that to be even more so when someone is entrusted with the special care of such special little children as ours. I also like to consider my wife and I as good judges of character and integrity and having that six sense when something just doesn’t seem right. We are diligent parents who pay close attention to our children and their behaviors, moods and routines from day to day. That is why I even shudder to think that anyone employed in our boys care could ever act like the characters in this story.

But, how do you really know? Trust, but verify – I say!

When the police came, Stefan Ferrari’s teacher described Oct. 21, 2008, in her classroom for autistic children as “a regular, ordinary day.”

Perhaps it was, except for the tiny digital recorder sewn into the collar of Stefan’s shirt.

The device, planted by Stefan’s mother, collected eight hours and 19 minutes of sound, much of it the banality of yet another school day for a non-verbal 10-year-old. It also captured the teacher and her colleagues talking about sex and martinis. It picked up the teacher’s teasing Stefan after he ate pizza from the trash. And it chronicled the threat of a “be-quiet hit” to a crying child, followed by the repeated slaps of an adult’s hand against Stefan’s bottom.

That single day in an Atlanta classroom led to lawsuits in state and federal courts, to the teacher’s firing, to threats of criminal charges — against Stefan’s parents — and, finally, to what may have been the inevitable fracture of the boy’s family.

You can read the rest of the story here: An expensive fight over a boy with autism