Pathways Update!

Hello Faithful Readers of This Blog,

I wanted to send a brief hello and update as I am now back in the States, performing the military duties that I have to endure shortly after an overseas deployment and preparing for some much-needed downtime with family on leave through the end of the year (to include a Disney Cruise!!).

I certainly haven’t forgot about you, have much to share to add value to the autism community and look forward to emptying my email box and catching up on things that I believe relevant to the growth and nurturing of our community.

In the meantime, I hope and pray that your holidays are spent in thanksgiving, are (remotely) peaceful ;-), and you are looking forward to a new, incredible 2012!

Be back with you soon!

God bless,

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

Autism Waits On No Deployment! Part #1 (Care For The Stay at Home Parent)

You are deployed.

Your spouse and kid(s) are at home.

You certainly have your share of deployment stress with twice as many work hours, little sleep, not very many comforts of home, frequent attacks in various forms by the enemy and that constant longing for home.

Yes, you have it difficult, but remember that your wife or husband is back at home WITHOUT YOU to provide 24X7 care to your autistic children while you are away. The burdens and challenges that you used to be there for are now solely hers. Also, you are not there to come home and help around the house, listen to the struggles of her day and just be there to be a loving arm around her, tell her you love her and lift her up for another day in her version of “the trenches.”

I am currently deployed as I write this and I was hoping to just share some thoughts for my brothers and sisters in arms who may be struggling right now through the challenges of autism during your separation. I certainly don’t have it all figured out and many times thought and deed do not always go hand-in-hand for me. But, in my absence I can honestly admit that I do not have it twice as hard as my wife does back at home without me (even with the enemy shooting at me all the time). The stress at times can sometimes be unbearable and it takes an extremely strong and committed bond to make everything work in a marriage with the added stress. Any husband or wife that has ever spent a few days all by themselves with their autistic kids KNOWS beyond belief how frustrating, difficult and stressful it can get. And that is just for A FEW DAYS! Now try managing the household and those kids for a WHOLE YEAR – BY YOURSELF! Like the last time she got away for a few days to get some time on her own, this time she isn’t coming back. You have to be the sole care-giver for the next 52 weeks on your own! Every emergency that comes up. Every sleepless night. Every tossed plate of food on the floor. Every meal that’s cooked just a little but off that now won’t be eaten and there is nothing you can do to correct it for your son. Listening to that crazy, psycho noise he does with his tongue for hours on end. Throwing up all over your bed in the middle of the night. And on and on and on. Oh…and did I mention that you have to do this…ALL BY YOURSELF!! Yes, I know, you can imagine yourself with the look of the flushed red face, veins popping out of your neck and temples, shaking…no, CONVULSING – head about to explode! Kind of like that old horror movie Scanners!

Well, that is your spouse while you are gone. The enemy isn’t so bad anymore is he. Bet you wouldn’t trade places. I know I wouldn’t. My house is a dangerous and scary place sometimes. I don’t know how my wife handles it to be honest with you. And to do it with me gone. Sheesh.

So, here is my first bit of advice and it goes to the stay at home parent during deployment. Listen, and listen carefully. You have got to get out of the house on your own, and have your own life as frequently as is all humanly possible. Or, you will go INSANE. It is not healthy, nor is it safe for your mental well-being and/or your children’s physical safety. I say that only half joking as the incidences of child abuse among special needs kids from stressed out parents is way too high in our society. Babysitting in special needs land is called RESPITE for a reason. Respite: a usually short interval of rest or relief. TAKE A BREAK for crying our loud. My wife fully knows that she has a no-need-to-explain policy of spending extra money on extra respite to get out and do things on her own. Every wife who has to endure a year on her own with the sometimes maddening days that autism can bring needs to care for and protect herself. Take breaks some how, some way. Whatever it takes. Just get them. You deserve them are are duly entitled to them.

I took the following advice from the Guide for Military Families from my friends at OperationAutismonline.org for the parent who remains at home during deployment. If you don’t have a copy of the this guide you can click here to get it.


“Independent of the impact on the child with autism, the impact of deployment on the parent who remains behind is significant. If it is true that it takes a village to raise a child then, by extension, it takes two or three villages to raise a child with autism and a mainstay of that second village is now absent. Some recommendations for how you, as the stay-at-home parent, can best deal with the challenges of deployment include:

If you know a deployment is pending, plan ahead. Determine what additional help, specifically, you are going to need and prioritize your needs. For example, even though it may be quite helpful to have someone assist in getting everyone ready for the school in the morning, it might be more important to have someone to help out after school when you are making dinner. Don’t be afraid to ask for help if you need it. See if your child’s school has an after-school program he or she can attend. Recruit volunteers from your community of faith, extended family, and neighbors to help when you most need it.

Learn to accept the simple fact that despite all your best efforts there will be days that are, to be generous, less than perfect. If it is the result of a problem that can be fixed, do so and move on. If you find yourself having to modify your personal standards of success (e.g. accepting that getting into a battle on the use of a specific “sippy cup” may not be the best use of your time) then do so and move on. All that can be expected of you is your best effort and on days when that simply does not seem to be enough, do what you can and move on. Tomorrow is always another day.

Network with other parents both inside and outside of the military. Other parents are often great sources of ideas and strategies to make each day go as smoothly as possible. Although it is a cliché, you will need to find some time for yourself to take care of yourself. Whether it is regular exercise, reading for pleasure, meditation, carpentry, or anything you prefer, the more you can work the activity into your daily or weekly schedule, the better you will be able to deal with stressors associated with a pending or current deployment.”

From one parent of autties to another, thank you for walking the path less traveled on the pathways in autism. Thank you for doing your personal best to give your children the very best care that is available. Thank you for your sacrifice and service to country by your service in the military. And finally, thank you for taking care of each other during your time apart. Absence makes the heart grow fonder. The time apart will not last forever and the reunion will be sweet.

God bless,

Mike

What Change Can Do To the Family Dynamic!

Our oldest, Zachary, is pretty resilient to changes in life routine with his Autism. But, regardless of how strong or developed your auttie appears he still has his limits to tolerance of change. We also have our emotional limits in helping our children through these changes. I was reminded by this through Zachary’s recent changes in behavior during the upheaval our family has recently gone through – specifically acting out verbally and at some times ever-so-slightly, physically. Taylor, our middle auttie, is very easy going and I have to imagine that the recent sequence of changes in our life recently has and will have an effect of some kind on his behavior although not discernible at this point. Carter appears to have adapted to the changes well, but at 17 months he has developed a VERY deliberate and clear verbal expression of the word, “NO!”, and “GET DOWN”, lol. He must get it from Lisa and I for sure.
Going back to Zach though… My little 7-year-old has been put through a lot lately for ANY kid let alone an autistic one. Zach has some sensory, cognitive speech delays and has relational attention needs which require diligent and quality attentiveness most times of the day. When he isn’t in school we have to keep him engaged in some meaningful play or task or WATCH OUT – attitude swing on the way. Over the last month our family has been preparing for two major events: 1) a move out of state, and 2) my deployment for a year overseas. Since Zachary doesn’t verbalize and express his feelings all that well because of his disorder, I know it has been very tough for him to express the feelings he has had in moving away from his friends, his teacher, his aide, his normal and regular routines, his home, backyard and neighborhood that he enjoyed, and the familiarity of our home life – which included having me in it. Knowing also that I would be leaving soon for a year to a special “army camp” (the way I explain my deployments away from home), started to become very obvious right in the middle of our cross country move. He started slowly acting out, but his outbursts grew with time as our move was nearing completion and my exit was imminent. The only outlet for emotion he had and still has, to a certain degree with me gone now for over a week, with his limitations of expressing his feelings is to act out, misbehave, not listen or not care as both an outlet and as a way to get even more of the attention he desires with the understanding that I’ll soon be gone.
Now, cut away to the dynamic between Lisa and I…Lisa has known for quite some time that I would be gone for a year and that she would have all three special needs boys for a YEAR on her own without my assistance. I wouldn’t be there as a supportive husband by just “being there” when she may be short on patience, exhibiting a servant-attitude for the boys or just needed a back rub and some quality time. All that would soon be gone for a good stretch. Throw in the completion of our legal battle with our Colorado school district and the potential hassle we would have getting the boys enrolled and IEPs enforced/re-written in our new district out of state to add to the stress. OH…and add on top of that her pursuit of her BCBA. OH…and the internal struggles with our military health insurance provider Tricare as we move from one region to another (think endless calls and visits to your local DMV and how productive that usually is). Also, not to mention the regular stressors and anxieties caused by a husband and wife that will soon be a part for a whole year; a couple who is very committed and loves and respects each other’s role on the family team very deeply. STRESS with a capital “S” is the only way I can describe it. Stress, in general, is nothing new for our family. It comes with the territory of raising a family full of Autism, however, with these particular added life changes at this particular time, the stress level was certainly at a 10. This was certainly evident by the way too often raising (read: yelling) of voices toward each other, toward the kids, toward the grill that fought me from putting it together properly, to the garage door opener that wouldn’t function as the manual stated, etc… I think you get the point.
Through all of this stress though, Lisa and I kept verbally reminding each other what we were going through and to ratchet up the patience and love for the kids one more notch. We did this even when everything in us was screaming to just drive the kids down the street and leave them on the corner for someone else to deal with. Or, perhaps a posting on Craiglist for “three slightly used, quirky little kids”. Or, perhaps sell them at our next garage sale. It is times like this where any “normal” family if hit with the challenges and stress families like yours and mine face would crumble and be incapacitated by the enormous burden. Families like ours cannot afford to collapse. Our kids need us to be strong, yet loving, patient and caring for them. Their whole life and development as a person depends on our resilience to not lose it when it gets the toughest. My favorite book, the Bible, has this common theme written all through it based on the love that Jesus has for his people: “Die to self”. “Self” is the opposite of “serve”. When we are being strong for our autties through change and its associated stressors we are “serving” them. When we lose our cool, yell at our spouse or at our kids and withdraw into our own wishes, desires or feelings we are being selfish. That’s just the way we’ve been hot-wired as a species. “Self” will naturally come first as an instinct. To serve is a conscious, sometimes albeit forced act against our human nature to care more for another human being than we care for our own selves. I found during these last few weeks (and trust me I blew it as many times as I succeeded, but the desire to do right was always present) that the stress was the highest when I was focused on my OWN needs and wants and not my families. And when I stepped back and made that deliberate action of serving my wife or boys needs when I could see they needed it most it was amazing to witness how the whole environment changed for the better – at least in the moment.
Remember that life is dynamic – it is always changing, developing and evolving as we grow older. And don’t you find it as strange as I do that “life” always has a way of getting in the way of “life’s plans”? As you walk the pathways of autism daily you’ll find yourself challenged everyday. The day you will no longer will be challenged is the day you will no longer be breathing. Your autistic kids are changing and experiencing new life experiences everyday too – both tiny and huge. And this causes stress. And we know what this does to our auttie. Be patient with him. Just as stress freaks us out, it will do the same and much more to them – which then takes a toll on you. And without an attitude of a servant, you will find yourself lashing back on your kids and doing more harm than good. Take a deep breath, go in the kitchen and get a cold glass of water (as the meltdown in the other room occurs), say a quick prayer (of you’re the praying type! (it helps me out!)), put a smile on your face, turn around and go back in that other room to LOVE and SERVE the needs of your kid without thought of self because they need you now to that the most – because they aren’t as capable. I am sure you are like me that you want your kids to “turn out” as best as they can. I have high hopes for my three boys as well even despite their disorder. But I always remember that they are going to be a direct reflection of the environment I create for them at home, the example I provide them daily with my own attitude, emotions and beliefs and the selfless love I provide them in the best and darkest times. You can do it. You are better than you think you are even in the highest stress. God never gives you more than you can handle and He gave you the family you have (or don’t have in some cases) because He loves you and knows you are up to the challenge. Embrace it for your auttie’s sake.

God bless,

Mike