"Mommy", he asks, "is it okay if I call the cat the 'p' word?"
"No, you'll get in trouble", I reply in harmony with my husband. I think about it for a minute. "Wait...what 'p' word do you mean?"
In a whisper, he says shyly, "Patches".
Patches was my cat's name when I adopted her. She didn't look like a Patches and I can't say she had a great life under that name, so I changed it. I had to laugh at the kid's sheer innocence. Patches, of course, not that other word. Not pussy cat... The boy makes me laugh. I still had to explain to him that the cat's name was special and something I worked hard to get her to recognize as her name. We don't want to remind her of her previous life.
Summer is is coming upon its last full month. Our August calendar isn't filling up quite so quickly either, which I hope means that we will have free time to enjoy the sun and sand, water and outings that we are accustomed to this time of year. I also hope that means less time in waiting rooms and hospitals along with fewer trips to the pharmacy.
My greatest hope is that my kid can will feel more secure, feel like life is normal again. The cracks are starting to really show as his behavior reverts. We are having more meltdowns, he is clingy, he is more impulsive, he just isn't at his best.
The other day, he had a meltdown because his aunt's daughter came for a surprise visit, usurping his special time between him and his aunt. It's his only real one on one time these days. He figured if his cousin spent the night here, he could make up for that lost time with his aunt; A plan to which neither his aunt nor parents agreed.
It was two hours of pure autistic meltdown. As his parents, we were not prepared at all. It was the longest meltdown we've had in quite a long time. It wasn't especially violent, but it was filled with spiteful words, sobbing, wailing and stopped time in our house. It was also the third one in a week.
We simply aren't used to these long, dramatic meltdowns anymore. For the hubby, its terrible. His brain is still healing meaning he is sensitive to sounds and does not have the patience he once did. He gets as frustrated as the kid because he a) can't squash the meltdown and b) can barely handle it because the shrillness and shrieking causes sensory overload.
I have to admit that I was half deer caught in the headlights and half calming force. I thought to myself that I needed to re-read my "How to Deal with Metldowns" section in our Family Manual. The kid looked to me to help him negotiate and cope with his feelings and I was a tired, stuttering mess.
I should add to this that our current heatwave effected all of us at the time: I have no tolerance to heat like this, never have and heat exhaustion is something I succumb to easily. I had just begun to cool down after being outside when the tantrum ensued. The kid was also coming directly in from the heat. He was hot, tired and upset. The hubby's pain has increased significantly since the heatwave started, which is common for Chiarians, but worse being only two months post-op and possibly having a leak of some sort (increased intra-cranial pressure bites). As a family, we muddled through the whole thing.
I don't think the kid understands how to cope with what he is feeling. I've said this before and I'll say it again: Watching and worrying about a parent go through a major medical condition, surgery and recovery is hard for an adult. Not only is the kid not an adult, he's emotionally delayed thanks to Asperger's Syndrome.
While he was amazing during the initial process and immediately after the surgery, he's now able to have all those fears and worries come to the forefront (as it is for all of us). He's adjusting to Daddy in recovery as opposed to Daddy the Mother Hen, fart joke buddy, and generally his go to guy for all important kid stuff. He's adjusting to what Chiari means for his Dad, him and his family. This is just one phase of what will be a long recovery.
With Asperger's, having your entire world turned up-side-down and inside-out is devastating. Anyone who doesn't realize that is not thinking about the kid. Daddy has always been his rock, so this is the hardest thing the kid has ever been through. Daddy always understands him, is always there for him, is his... well, dad.
But it isn't the same anymore. Daddy isn't around-- not like at work not around, but convalescing not around. The strongest man alive according to the kid isn't so strong right now. Yet, Daddy is trying his hardest to still fill his own large shoes, even if its in short increments. There are times when Daddy tries to be there longer, be stronger, push past his current limits to be the best dad he can be. Sometimes they have those normal for them father-son moments. Sometimes pushing past his limits, Daddy doesn't always succeed... yet the effort means something for all of us.
Because of Chiari changing our lives, I am looking for a therapist for the kid to see. I would prefer a male, but it is rare to find a male therapist willing to work with children-- my husband was one of the only in our area. There are three female candidates, one is probably out because she is the hubby's boss (and so busy!), which is a shame because I trust her the most. The other is the one we saw previously, who made no great impression on me (or the kid). The third is through the agency dealing with visitation, but who has not actually started work yet.
Speaking of visitation, that adds another stressor onto my poor kid. While we've discussed it briefly with him (because with Asperger's, you need a lot of warning for any new thing), we haven't gone into great detail. The hubby and I are going to visit with visitation therapist first to go over the information and get some guidance on the best ways to discuss the subject in detail. I need to do some reading, too, about Asperger's and supervised visitation (there really isn't much out there, ugh).
This is something I'm not really good at because I have a gut reaction that is extremely hard to control when I even think of the subject. So, the hubby has been taking the reigns on this matter. In a strange way, that has been positive thing-- it reaffirms fatherly strength.
With all that has happened, its no wonder we are back to meltdown several times a week. It's not only the hubby that is recovering, but each person in our family. Providing the kid with a safe outlet to process all his emotions is at the top of my daily to-do list. Remembering to have patience with everyone, including myself, is in the second spot. Reminding myself that its okay to muddle through life when it becomes unfamiliar is just fine, too. I wish I could have a magic candy that not only melted in his mouth, but melted away the kids meltdowns and made him feel like he was again on solid, less stressful ground.