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
This is the kind of stuff that really riles me up in a big way. Any parents who has ever advocated for their autistic child know that sickening, angering and gut wrenching feeling when your child’s rights to proper care or education are denied. It is even worse when the matter goes to court. My wife and I have been there multiple times in due process and state complaints, and have watched the bureaucracy and politics that occur with governmental organizations that do not want to comply with the law.