I recently wrote this as a Facebook post ---
This past weekend was a particularly tough one. Ok, it sucked. Big time. A wonderful consult with a wonderful autism doctor earlier that week led to a renewed commitment to following the ketogenic diet she has for my son. She even shared recipes she uses which was a huge stumbling block for me - just figuring out what to cook, what ratio, etc. Saturday I was to go shopping for all the ingredients and begin a cook-a-thon to have a bunch of meals for him ready to go.
I guess that was the beginning of it. That yet another weekend would be consumed with yet more autism. It's summer. School's out. We should be footloose and fancy free. But no. Lately autism has seemed like a huge solid mass sitting in the room that I could not move or escape seeing. It was in every room. In every aspect of life. But it's more than a solid mass that bears a burden so heavy it breaks your back trying to move it - literally. It's more a vapor. It permeates every corner, crack, and crevice. Saturday mornings are the mornings Todd gets up after sleeping in (for him) and gets Brandon, -- his bacon, his bath, etc. so that I can have a morning not doing those things. But I guess when Todd got up, he went outside in the Log Cabin and I guess fell asleep in the chair in the remote corner you can't see from stepping outside the back door. I got up, Brandon was up, and Todd was nowhere to be found. I called, yelled, and literally called - his phone. No answer. I had no clue where he was....I did look out in the Log Cabin, but didn't see him. I did call, he didn't hear. I became more and more angry. The one morning I get to not have "autism" I found myself doing autism. Finally Todd came in the back door all leisurely, and of course every one of those "I have 99 stressors" were unleashed on him.
And it went downhill from there.
I try to be so hopeful with my HOPEISM. I try to overcome autism as best I can for Brandon, for me, for my family. I think most days I win in that. But also, I try to be real in the process. And I guess if I'm being totally real - one of the most courageous things one can do is admit not so much defeat, but an overpowering. A suffocation. An oppression. A desire to raise a white flag and just quit. Those are the sides of our lives with autism that hardly anyone sees in its true raw form. It's too embarrassing. Too open to judgement. Too real. Too ugly. Too much.
The things we argued about, the things I yelled about that day, were very much directed to each other. But it wasn't about us. It was because of autism. Autism had slowly crept in all around us for too long and we were suffocated. With no one else around, we turned on each other. The things he said about me, the things I said about him, -- were all a direct result of there being not only no more of "us" individually, but no more of "us" as a couple. I think at one point when he was sharing things with me, I had totally tuned him out. I admit that. He knows that. I was just beyond my limit. I had nothing more to give or say. And I'm not one who has a lot out loud to say anyway. He did at one point ask what I was thinking, and I simply said, "Nothing." But that was a lie. I was lusting. Pure in the flesh lust. No, not for another man and romantic escapades. Just lusting for a weekend away from autism. And not "a weekend" - but "weekends." The kind of weekends you get when you can send the kids to the other spouse or to Grandma's. Not a four hour teaser, not someone else in my house, but to just be in my house for a whole weekend with no autism. To be able to plan to do something, and to actually be able to do it. I was thinking that for us the only way that would ever happen is if we divorced and had two houses. I imagined what it would be like to get to spend an entire weekend at the beach, or swimming laps and going to the Nature Trail. Of going out to dinner after that. Of watching a movie (heck, going to the movies!) without humming and Brandon's head in the middle of the screen, or having to check on him, get something for him, take him to do his toileting routine. I wasn't totally selfish in my lusting - I wanted that for Todd too. He has no time at all in our house, by himself. I imagined the years added to his life if he could just have every other weekend of peace and quiet and no indigestion.
But --- back to reality in that the entire Saturday I went back and forth to grocery stores finding ingredients for autism. Spending money on autism. To spend the rest of the weekend cooking for autism while in between taking care of autism.
I love my husband dearly -- our marriage will survive -- this is simply to show the reality, the enormity, of the toll autism takes. At least for me. I know Todd and I have a strong marriage, more credit for that to him than me, and I'm sure the reason why we've survived as long as we have is because God blesses our marriage. We are committed to each other - but that's not to say that even the strongest marriages with the strongest of people are shatterproof. I was shattered. I wanted to run. I wanted freedom not from marriage, but from autism. And to show the depths of autism's root in every aspect of your life, I felt that the only way to break the suffocation of autism in my life would be to leave my marriage. What kind of a society are we in where to get help -- the only way we can is to live in two houses so at least we get every other weekend off?
Autism is lifelong. Think about the strength and perseverance these families have to endure all they do for so long? Teachers are insane by the end of the school year -- our school year has been 21 years now with no summer break in sight! Not even a professional day. A WEEKEND. OR HOLIDAY!
Think about that.....
I can always tell when it's "Camp Blessing" time. We hit the end of our rope. Then we get 4 nights off. Which gives us just enough of a gulp of air to go back down only to slowly drown again until the next gulp of air comes around the next year.
These people -- these people who do these surveys about marriage and stress with autism - where are they when they get the same results every damn time but do nothing with those results?
Where are these autism organizations who know the number one need is not genetic research but direct help? That help being respite. Away from the home respite.
My gawd, we are married people cracking under the stress - at least there's two of us. What do single parents of autism do?
I sat there on the couch looking at my husband sitting on the other one, and I saw him cry. We were at the, "At least I get to be home for some time without Brandon when he finally can, or does, get to school" and he said, "When.....when do I get to be in my house without autism -- ever?" Our Pastor had given him a book -- and he was like, "When........when can I even think about reading this book? I go to work early to work out so autism doesn't kill me......I come home and try to help with Brandon.......then I go to bed.........."
He was right.
He has all this equipment to go repelling... "When?" he asked with tears in his eyes..... When will he ever get the chance to pursue something for him?
When will April (Autism Awareness Month) ever mean something useful to thousands of families like ours?
I know how I long to be able to do what I want to do, but at least I do have a few hours humming free while Brandon is gone. One could say that I could do "all the things" I would like to do then, but consider that we are only talking about 4-5 hours a day, and researching how to better help Brandon consumes most of that before I even realize it. But for Todd -- when for him does autism end? When is there non-work, non-autism for him? Retirement you say? Nope, no prize for you -- retirement will never come to those who have autism in their lives. At least not our kind of 100% dependent autism.
So in the scenario of our very bad awful weekend -- what is our solution? Our quick fix? Where is the self-help book for respite to magically appear? Where is the marriage seminar/enriching weekend that we could even go to? When in reality, the opportunity to go kayaking or have a weekend off is our marriage-seminar/enrichment weekend! That is all the "therapy" we need.
That is what real courage is. Never quitting the fight even when you know you most likely will never win. No cure to change the situation, no regular help to make it more bearable. Courage is continuing to fight when all you want to do is quit.
So the sun went down and still no solution for us.
All there is, is a new day, continued HOPEISM, and a God-sized resolve to do the best we can in the face of never-ending autism. Sunday Todd woke up and did dishes and shop-vac'd our house and I cooked, and cooked, and cooked. Then Sunday night we tried to watch a movie between Brandon humming and getting into things in the kitchen. Our immediate solution is that since we both can't do things together - that at least one of us needs to be able to have some sort of life. Todd must find some buddies he can go repelling with, shooting with, on weekends. I need to cook dinner later so he can have some time after work to chill before leaving one job and jumping head first into sharing in another job -- autism. I'd like to say that I could take Brandon and go somewhere leaving him time to have the house to himself - in peace and quiet - to read his book. But where? Where do I go with Brandon for a day? With his sensory limitations? His toileting needs? His diet needs?
It's these daily challenges in "Life with Autism" that leave so many of us deeply hurt and angered when we see words like "courage" and "Bruce Jenner" in the same sentence. When we see celebrities portrayed as heroes. It's not courageous at all to be rich and able to buy the change you want and it's insulting to no end to be a part of a society that idolizes everyone but the most deserving of respect among us. When we're invited to a marriage seminar put on by people who have never had to endure what we have to for as long as we must and attended by married couples who have not a clue what real marital stress and hardship is.
I feel proud that we as a society are finally understanding the need to honor and help our veterans with healing retreats for them and their families.
The time has come to recognize the rest of the battle-weary warriors as well.
Parents of children, youth, and adults with autism.
No, I don't know how that could happen.
But I know it must.
And it can.
Churches have empty buildings every Saturday. There are EMT's who would volunteer time along with those churches that are full of servants of every age and ability.
Campgrounds have cabins - with funding help and volunteer help from all aspects of the community, weekend respites are a doable thing.
As much as our marriages or the parent needs the respite - our children/adults need the recreation. They need somewhere to go. Something fun that they can do.
I just wonder how many more marriages will crumble or shatter as ours did that weekend, how many more single parents will have a nervous breakdown, - before those who can be a part of doing something about it -- before those who should be doing something about it --
Do something about it.
And in the meantime, all we can do is the best we can. We love each other and we love the Lord. We live, laugh, and love.
We choose happy and face autism with the courage of a soldier in battle.
And hang on to the HOPEISM that eventually we'll win.
Or that reinforcements will come......