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

Be An Encouraging Spouse

When you are deployed like I am currently, you have a lot of time to think. For an analytical-type person like me that can be both a blessing and dangerous at the same time. Lately, I have been missing home quite tremendously. That is normal with deployment. My home, however, if it is anything like yours is full of autism. Autism creates a culture of its own in our home, and if an untrained observer looked at our home objectively she may use words such as “hectic”, or “disjointed” or even “haywire” on most days. Then there would be the few serene and peaceful days where there are no melt downs, arguments between my wife and I usually induced by the rigors of the autism-driven stressful life and everyone in the family is humming along what is more than likely a normal day (for most families).

I miss the hectic and haywire of my family living with autism.

More than anything though, I miss being there for my wonderful spouse. She is a godsend for our boys. Is she perfect? In many ways I think she is. She, though, would certainly demure and then provide a lengthy list of everything that she is failing at. She’s an overachiever for sure.

Her days are tough. Autism makes them tough. Sometimes unbelievably and unrealistically tough. And with the schedule she has with finishing up here BCBA classes, and now stepping back in (a little at a time) into the professional passions she has always had I know that life is only more stressful. I miss being there to encourage and just be near my spouse to let her know that whatever happens I am right there and have her back. That security isn’t readily there for her right now and I know it has to be tough – but she never shows it. She never tells me. She just braves and endures it. Perhaps its because she doesn’t want to add stress to my deployment and all its rigors by venting about the challenges autism brings to our home. She’ll share some of the difficulties with me, but I know she protects what she is REALLY feeling sometimes. She is a warrior in the defined sense of the word.

Now, I am far from the expert on this topic. And I strive to get better at it all the time – even despite deployment. A wise friend told me years ago that once you are married you no longer live life for yourself. It’s not about you anymore. It is about the leadership and service that you must provide in your family to your wife and to your kids. I believe the misunderstanding of this by men leads to many problems in marriage. In fact, I believe that 95% of the problems caused in marriage are the man’s fault! There I said it! Part of that “dying to self” mentality is the practice of encouragement to others. This is an area that I practice, but yet long to get way better at it for the sake of my wife, children and the world around me. I strive to be better so I can help make her better. My wife deserves all the encouragement she can get with the role she provides in our home. She never quits, she never tires, she’s always, always serving the needs of our boys and she always is on her A game. She is a fighter.

But, she is human. That drive she exhibits in all things is a choice. It is a die-to-self attitude that she displays by choice. Support and encouragement by me can only fuel the drive and perhaps lighten the burden on occasion.

Please take the time to tell your spouse, your partner, the one in the fight with you that you love them. Tell them that you appreciate them. Tell them that you have their back and are there for them – through anything, till the end! Point the things out to them that they do well, because many times they are too busy with autism to see the good and the effects of the good they do. Make sure they know they are special and making a difference in yours and your children’s lives. Serve her. Talk with her. Share with her. LISTEN to her.

Encourage her – every chance you can. If you are reading this and your spouse does not do the above – then YOU do it back to him or her. Do it anyway. Even if they DON’T deserve it. Serve anyway. Lead anyway. The practice of providing encouragement will eventually lead to reciprocation. Just like a smile – hard to see one and not smile back at the person. Get me?

Here are some nifty encouragement quotes to finish with:

“When you come to the end of your rope, tie a knot and hang on.” ~ Franklin D. Roosevelt

“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” ~ Mother Teresa

“If you’re going through hell, keep going.” ~ Winston Churchill

“When life give you lemons…

You know the rest of that one…

In Advocacy,

Mike