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

Social Acceptance, Autism, Bullying and Your Kids

I’ve been reading quite a few articles about bullying, social acceptance, people skills, communication skills and for children of different ages on the spectrum. I am sure that my two older boys have experienced some form of direct teasing, mocking, shunning or perhaps even bullying so far in their short life spans thus far, but it hasn’t been of any significance where I have been notified or have had to intervene…yet. I say, yet, because I know that the world, in general, is cruel, critical, condescending and a very difficult place for anyone that isn’t considered “normal” by society’s standards. I know at some point there will be an “incident”, but I pray that I will be able to adequately prepare my boys how to first, recognize, and then work aptly within the confines of their disorder to act and diffuse any potentially threatening situation. I hope and pray, but am also realistic to know that it is just a matter of time when Mom and Dad are going to have those difficult talks and coaching sessions with our boys.

For now, the middle one isn’t really at the capacity to really care if he is accepted socially and certainly doesn’t seem to know if he was getting bullied or not. Those are not of concern to him yet as he is also still mostly uncommunicative, save for the times that he utilizes his PECS. Unless there was some high degree of annoyance which would cause some sort of physical affront or pain to him – such as the kind his older brother is sometimes adept at applying to him (brothers will be brothers and boys will be boys – we’re intelligent enough to recognize the difference between boyhood and bullying). Our oldest though appears to be blessed with people skills and a way of connecting with many of his typical developing peers. I don’t believe he knows that he is different at this point, and frankly I must imagine that most of his classmates must just consider him a little “quirky.” I am assuming, as I haven’t had a chance to ask any of them yet. As soon as deployment is over and I get to meet his teacher and aide I’ll be sure to ask around to get a feel. At some point typical kids are probably keen that if a kid has an aide in class there must be some special issue that is being dealt with. At some point I am sure my oldest will pick up on that fact as well since not too many others have aides to help them one on one in his class. The questions and subsequent discussions will come at some point. I will be properly prepared to educate him and lift his gifts up at the same time. Regardless, none of them get too much special treatment from us. We’re a “pick your own self up” household!

I hope and pray like all parents that my boys will not have to endure too much of the cruel world and how cruel kids can be. I know that as I grew up I longed to be cool and stumbled about as a youth trying to figure out the social acceptance model that all kids have to go through. I can’t say that I was one of the cool kids, but was fortunate to have good friends at all level of the social pecking order. I considered myself counted in the social circles from the those considered special needs, to the outcasts, to the burn-outs, to the nerds, to the honor roll, to the jocks and to the preppies (excuse the terms from the Eighties, as I have NO idea what the social labels are today, lol), but didn’t belong to any particular group. I played sports, sang in the choir, acted in the drama club and was member of the quiz bowl team. I did many things of those things a teen shouldn’t do on a weekend, to include my fair share of parties at both the high school and college level in my teen years (sorry Mom). I can’t say that I was ever bullied, by the definition of such (maybe an extended disagreement with a few though, lol), but of course I was picked on from time to time and had to extend my “growins-up” by settling matters with a wrestling match or a couple well placed blows. Some “won”, some “lost”. Knowing what I know now I will coach my boys as the late, great President Theodore Roosevelt taught, “Speak softly, but carry a big stick.” There is a time for verbal negotiation out of situations where words have been wrongly taken between kids, and then there is a another time for self-defense. I will appropriately teach my boys when to appropriately apply one or the other and how to do both with specific and powerful results to their benefit.

Life is just cruel. And when those cruel moments will happen to our wonderful autties at some point I know it will be sickening, heartbreaking and angering all at the same time. If we do our best to stay in tune with, be there for them, build that parental relationship and know our children well, we will be able to spot just by their behavior when something is wrong away from home. And if we are prepared to have those discussions and to teach those life’s lessons as best as we are able through the disorder they’ll have a better chance to come through it unscathed. It won’t be easy. It will take work. But, no one will fight or work to defend our kids more
than us parents.

In advocacy,

Mike