Vacation Fatigue

Have you ever heard of the term ‘I need a vacation from my vacation’? If you haven’t, it is when you take a vacation and do so many things that when you get back to your obligations, you are exhausted! Vacation should be a time of rejuvenation, even if you are exploring new things. For me, vacations almost always include my kids and therefore it is much like being home, but in a different setting. There are sibling squabbles and cries of hunger. The inevitable scrapes and bruises, and the ever-present need to keep some semblance of our regular schedule, especially so we can sleep. That last one probably doesn’t apply to many, I know many kids who handle change and flexibility well. My kids do not. AT. All. So, yeah, I went away on a lovely vacation and now that we are back and thrust immediately into camps, friends, and a need to unpack; I need some alone time to recoup my senses. Not going to happen soon, unfortunately, so I just use the times between and after activities to sit and just be. You know, when they let me, because spending time with friends isn’t enough and once home, you still want to interact with me!

What I have learned, is not to over schedule  our summers anymore. I am sure this need to schedule comes from a weird place many of us seem to have these days, that our kids will be ruined and forget their names if we don’t schedule every moment of their summer with the right balance of fun and learning. The super great, Bunmi Laditan, of  The Honest Toddler recently wrote that “I think this generation of parents is the first one to believe they need to create good memories for their kids via structured activities forgetting that childhood, when safe and watered, is intrinsically fun.” She goes on in this cool thread about how she feels the comparison heavy world of social media leads us to feel we must one up the other parents with how many fun activities we can do with our own kids. That last sentence is me paraphrasing and adding my own emphasis to Ms. Laditan’s words. For sure click on the above link to read it yourself, there is more good stuff there. Okay, back to our regularly scheduled programming. I think she has a good point. Not everything good for kids in the past is good for them now. And, I really hate the adage ‘my parents did this thing and I turned out fine.’ So this isn’t that either. But, I had some structured events during the summer, but mostly it was me going outside and finding something to do. Often friends were around, sometimes not. Sometimes this hanging out outside happened at a friend’s house. Either way, my summers felt fun. I remember the time with happiness and when it was time to go back to school and write the inevitable ‘what did you do this summer’ paper, I was rested and ready, emotionally too, to go back. All that to back up why I no longer schedule all the fun into our summers. The first time I did this, I was a frazzled, stressed out mess. Even before the new school year started, I wanted out from under them so I could rest! The kids seemed keyed up too, and I’m not sure if they felt they had even had a break from school when it was all done. I don’t want to feel like that again, so I changed the way I did things.

This summer, we are doing what has been pretty successful the last few years. The kids have 2-3 scheduled events like camp or vacation and otherwise we just go where the mood strikes on a daily basis. Sometimes that is the beach, or a friend’s house, the park, or the library. Dare I say, we even just hang out at home sometimes. And my highly scientific research tells me that we are all happier because of it. We had to jump right into some of those scheduled plans when we returned from vacation which has a lot to do with me feeling like I still need rest. I usually can just hang around and get that vacation from my vacation, not so this time. But, I roll better with it now and my kids are learning to do the same.

I Won’t Give Up

I wrote the following words earlier this week: As I listen to the discordant, high-pitched voice trample my love and concern, I dream of the day I don’t have to be my own champion. I wrote them in a fictional setting, but these sentiments follow me into my real life quit often. I thought I had gotten to a place where I wasn’t quite so invested in the behavior of my number one son. I tend to take it personally, though I know he has a number of medical diagnoses that exacerbate the severity of his behaviors, that the words he screams in anger don’t mean anything to him. Yet, I keep running to my room in tears, with my heart-broken and my body heavy with the weight of despair.

I have written in the past about my autistic son who also suffers with anxiety and oppositional defiance disorder. So, he has trouble with executive functioning skills, he has poor memory, he is terribly impulsive, and can’t stop talking to save his life. Also, like most children, he is the center of the universe and wants what he wants. Lately, he has become aggressive again. This time around he is bigger and stronger and louder. I leave rounds of aggression with him and am covered in bruises, and two minutes after he calms down enough to apologize he inevitably acts like there wasn’t a hurricane of emotional tantrum with him at the center. Right this moment, for the second time today, he is screaming about how hurt he is, how much we hate him, how we don’t listen to him, how it is basically our fault as his parents that he is screaming and kicking walls loud enough for the neighbors to be concerned. He is harming himself and breaking our hearts and I don’t know what more to do for him. Have you ever wanted to give up? I WANT TO GIVE UP, I WANT TO GIVE UP, I WANT TO GIVE UP! But I don’t. I DON’T give up. Every day I get up and do it all over again, because he is my child and I love him. But, I am not going softly into the abyss. I continue to work at getting him the best medical care and therapy I can. I am just really afraid that one day soon, the decision on how to care for him will be taken from me and my husband.

Does he understand what he is doing and uses the extreme behavior as a way to escape the things he doesn’t like and doesn’t want to do? Does he really not remember, or understand how he is hurting himself, how he is hurting those around him? I feel I no longer know what is prepubescent boy and what is ASD, or Oppositional Defiance, or Anxiety. Hell, maybe it is some nice combination of it all. That is usually how this works, right? Hardly anything dealing with the mind and body is completely autonomous and I should know that. Only, it is hard to be dispassionate and calm in the face of such anger. I know that I want him to accept and respond to help for this latest crisis, I want him to not only realize his potential but reach it too.

I am scared. I am tired. I am hurt. I will pray and continue looking for a good therapist to add to the roster. I will get up every day and do it all again.

Autism Moms And Stress

Well meaning people often ask, “How are you?” Sometimes this question comes from acquaintances you may see only occasionally and at other times it comes from friends and family. Most socially acceptable rules will tell you that you should just say “Well” or “Fine” and then ask the questioner the same. Well, I, as an Autism Mom often have an internal discussion on whether or not I am going to be truthful and if I am, exactly how truthful will I be? See, contrary to popular belief there are degrees of truthfulness.  Casual acquaintances usually get the socially acceptable answer from me and I get the same from those who include me in their ‘acquaintance’ list. But for those closer to me, whom I feel may actually want an honest answer, I spend seconds scrolling through my mental rolodex (that’s an old-fashioned contacts list for those of the internet age) so that I can answer this question. Why is this so hard for me and many other Autism Moms? Read on.

It is hard because I am constantly exhausted! I don’t mean the kind of exhausted you get where a good nap or extra sleep time will leave you feeling refreshed and ready to tackle that Mt. Washmore or Filemore waiting for you. I mean exhausted in mind, body, and soul. NO amount of sleep is ever enough. I am always on, always on high alert for the next fire to erupt, to try and read the small nuance that says today is going to be especially tough. Always defending, always explaining, always learning and discarding in an effort to give your child the best possible advantage. Most parents want the same, they want to give the best possible advantage to their children so that they can be happy and successful. The difference when your child has a disability or other challenges that set them apart from society’s idea of the norm, is a gaping gorge as large as the Grand Canyon. You can see where you want to go, but the road is winding, going up and down and around 100 year old trees, rock formations, and streams. It curves back on itself, there are wild animals at every turn looking to see if you might make a good meal, and every 2 steps, your travel companions has to stop and see the varying reds apparent on the rock to their left. 

I recently read an article that so accurately described the kind of stress induced exhaustion I live with that I wanted to share it with everyone. Back in 2009, Michelle Diament wrote an article on the site disabilityscoop.com entitled Autism Moms Have Stress Similar To Combat Soldiers. (Go ahead and click it to read for yourself) This article is based on research where a group of Autism Moms were followed, interviewed, and had their hormone levels tested. What they found was “that a hormone related to stress was extremely low”. In a nutshell, these Autism Moms experienced so much constant stress that the ‘stress hormone’ didn’t even react to the daily stressors of their lives! And according to Ms. Diament’s article, the researchers reported that this phenomenon is “consistent with people experiencing constant stress such as soldiers in combat”! Now when I think of soldiers, especially those in combat situations and hostile countries, I readily view that as dangerous and stressful. I think to myself, I am so blessed to not have to be in such a situation and equally as blessed that their are women and men willing and able to bear under constant barrage to ensure the life I lead here in the USA. You know what I never thought of…myself or any of the many Autism Moms/Caregivers who are all just trying to get their kids of the finish line like every other parent!

This month we are promoting Autism Acceptance. Many in the Autism community are invested in making sure you know that Autism is not a death sentence, it doesn’t mean a person has nothing to say, or any worth in your community. It is not a disease to be cured, it is a people to accept and learn and love, the same way you do with everyone else in our sphere of influence. And if you have an Autism Mom in your life, remember they are under a type of duress most don’t have to face and they do it daily, so if you have it to give, share an extra bit of love and kindness. It goes a long way to counteract that stressful exhaustion.