I’m going to be honest with you. Not that I’m usually dishonest, but I seem to think that when I write, my posts should be uplifting and encouraging in nature, and less “raw”. I usually blog after I’ve had time to process my thoughts. Tonight, I’m not waiting that long. I’m just going to write, because otherwise, I won’t be able to sleep.
It’s been a rough day. The kind of day that made me just want to run away… so I did. I didn’t go far – just to my bedroom down the hall with the computer so I could lose myself in photo editing and the grand blogosphere. I had decided that instead of incorporating things I enjoy doing and love to do (such as sewing, discovering a new way to create something pretty, or photography), I would create a new blog and keep the autism blog as a separate entity. It’s part of the enjoyment I get from creating – it starts with the creation of the blog itself. I started out just doing it for a little while since it’s Saturday, but then the more I heard kids and yelling and meltdowns, I decided against doing anything that would cause me to interact with that as much as I could possibly help it.
I stayed holed up in my room on my bed and only emerged for food, or to settle major disputes from the kids, or to refresh my glass of crushed iced tea. Kyle was home too, so I hid away long enough to see if he got to them before I absolutely HAD to come out of my cave.
There were several major meltdowns today, some from Samuel and some from Joshua, our 4 year old. Today, Sam was especially sensitive to people looking at him, or heaven forbid smiling at him, and began a new sensitivity to overreacting to Josh’s excitement about things. Sam would scream at him, “Why do you HAVE to be SO excited?!?!!” Josh wasn’t jumping up and down making lots of noise or anything, just smiling really big (a major infraction in Sam’s book) and clapping his hands saying “YAY!” to whatever it was he was excited about – probably cookies. At lunchtime, Samuel refused to ask politely (saying “please”) for more ketchup and cried about the fact that he doesn’t like to say it, and going on and on about why should he have to do something he doesn’t like to do with no satisfaction in any answer we gave.
As frustrating and sometimes downright maddening these behaviors are, today it was secondary to the main reason why I was so aggravated. The main reason behind my hibernation was because (really big GULP), I’m selfish. I said earlier I started out just messing around on the computer for a bit, but then it became obsession for the day in order to escape my role as “Mom”. And while I was engrossed in my own online world, it only frustrated me more to have to deal with anything else – like meltdowns and tantrums and helping put on shoes and socks and, and, and… . It frustrated me because with all the furstrations autism was causing my son today, I was upset because I was inconvenienced. I wasn’t so concerned with whatever was causing the meltdown or tanrtrum inasmuch as I could make it stop so I could go back to what I wanted to do.
See? I told you this was raw. I suppose in order to write this, I have had a little bit of time to process it. But the process went something like this as I recounted the day’s activity:
Activity of enjoyment
Frustration over meltdown – engaging Sam, resolving meltdown
(Repeat several times over until it reaches the next point)
Anger over autism and the irritations it causes
Anger towards myself realizing I’m mad because autism demands SO much of me and I’m just tired of dealing with it because of its severe inconveniences
Anger towards God for allowing this “divine appointment” in our lives
Anger over discontentment because of autism
Guilt that I don’t rejoice in trials and “consider it all joy”
Wrestle with God about all the above
I’m somewhere in the last few points right now, so I don’t have an answer. It makes me so mad that my son has autism. It makes me so mad that we have to deal with it and we don’t want to (much like the ketchup incident). It really makes me mad that insurance doesn’t cover professional therapy, except once a week meetings with a therapist an hour away, which we have not had in a month, and will not have for another several weeks. Everything we have to do to address the myriad issues autism causes rests on our shoulders.
It’s easy to say that we are going to rest in God, and give Him our burdens. But the fact is, we are still the ones that have to physically DO it. We still have to use self-control so we don’t throw a tantrum ourselves while dealing with Samuel. We still have to have the techniques and the knowledge to appropriately address the issues at hand. We have to make the decisions to lovingly discipline or correct. No matter how long I try to stay in my room, I still have to come out and fight the beast of autism that only taunts me with every punch I throw. The thing is, I’m not usually confident in my abilities to defend my position as the parent who knows what is best for my son. I’m scared that whatever I am doing is not best for my son, not appropriate for the situation, or it is not helping him in the long run. And truly, it all just pisses me off. I don’t usually like that word, but it feels appropriate to this context.
So now I’m left in a swirling cloud of anger and grief. And – can I say this out loud? I’m mad with God. I’m mad that somehow brokenness is supposed to be the way to glorify Him, moreso it seems than joy and happiness. I can’t have the day that all things are made new now – I can only hope for it. I heard a sermon by Alistair Begg recently that was really very good, but very convicting and striking to my heart. He talked about how all things in our lives are there by Divine appointment. That God, who is sovereign, foreordained all things at the beginning of time – that I would have 3 boys, and that one of them would have autism. That is one of my divine appointments. I am a mother of a son with autism. He talked about the struggle for contentment in all things, and how Jacob wrestled with God for a blessing. I feel like I could be more content even in the face of tremendous suffering if I knew that the suffering I was experiencing was a spiritual persecution of sorts – being ostricized for my faith, for example. Being disowned by family and friends for the sake of Christ. But this – autism? It doesn’t feel worthy enough to suffer for the sake of Christ. How do I suffer autism for the sake of Christ anyway? Is it just by having a “good attitude” in the midst of it? That hardly seems like a good enough reason to bear through it.
I have no resolution tonight. Tomorrow is Sunday, a day of corporate worship with my church family. Perhaps God will speak to me through something then. I’ve spent time reading Scripture tonight, and as far as I’ve gotten is that I’m supposed to be joyful, but I’m not. And I still hate autism.
So now what?