Wanting meltdowns to melt-a-way.

"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.

Frakenboot

I started this last Friday. I'm finishing it today, Interweb-Gods willing. 

Yes, it does. I've shed tears while trying to keep up with my kid, walk up the stairs and while doing other day to day things we take for granted. I saw my normal doctor who only wanted me to take a strong pain killer for breakthrough pain, and ibuprofen for the rest, except she didn't prescribe a strong pain killer. So, uh, thanks.

The doctor did get me in to see an orthopedic surgeon (or something) later this morning. I did something to my foot but the ER only focused on acute care and the doctor only focused on immobilizing my foot in a boot contraption that makes me feel and walk like Frankenstein. Senior citizens using walkers can out run me. So, I have dubbed this contraption of my foot "Frakenboot".

My fear, the thing that causes me great anxiety, is how on earth am I going to walk in the sand to the water in any sort of non-plaster contraption. And what if this new doctor says I need plastering? I might need to get plastered, just not the "of paris" kind. Lastly, how on earth am I going to keep up with my autistic kid, who is in full "I want FREEEEEDDDOOOMMM" (Bravehart like) mode because its summer and his friends are always knocking on our door. He's proven in the last week that he also needs "SSSUUUPPPERRRVISSSIONNN" (Mommy like) to avoid the harry moments of peer pressure he's for which he's not ready or fully equipped to handle.

Then there's the husband, still in recovery, still waiting for the doctor to figure out how to scan his brain for two hours in a tube when the hubby can't handle it.

The timing is terrible.

Now here is the continuation. I am too lazy to go back and change tenses. If you have no idea what I mean by 'tenses', Lord help you.

The orthopedic surgeon was meh. He was all set to take images of my foot until he asked me about my cycle. It was delayed, so he stance no x-rays for potentially pregnant women. I said "aww.... c'mon... I'll wear a shield". I asked if he'd amputate the whole damn foot instead. No dice.

Good news, though: The fact the location of the pain changed was a good sign... a sign of a sprain as opposed to micro-fractures. Explaining that to my pain sensors does no good, unfortunately. They don't care what is causing pain.; they just say eff-off when I walk too much.

The doc gave me some exercises to do daily so that my foot doesn't heel in a ballerina position. Despite my wanting to be as graceful as a ballerina, I have done said exercises. I have to use the Frakenboot, but take two two hour breaks a day without it. Part of that time requires ice and elevation and part regular foot use.

When discussing something for pain, the doctor had the pre-pregnant attitude. Normally, he'd prescribe Tyelnol 3 (common for sprains, which I know because this foot is on sprain number three), but in my case he told me absolutely NO PAIN MEDICATION, not even an ibuprofen.

Naturally, we went directly to the drug store for home pregnancy tests after the appointment. As soon as that stick read negative, I had myself some ibuprofen. Later that night, I had two cocktails. Well, one and half really because I started falling asleep. I'm not a drinker by any means.

My favorite part of the discussion was having someone help me chase after my kid all day so I can rest. While most people can hire a baby-sitter and/or mother's helper right off the street, we require a professional with college degrees or so many years of experiences... and licenses, insurance and bondage even. That $8 an hour quickly rises to $20 or more an hour. Stipends reduce the cost, but in times like these would exhaust our meager resources. Ya know, cause of the husband being out of work due to brain surgery.

Yet, when you are a specialist, such cost of care isn't tallied up in your head, but your accountants.

Now I know I'm not pregnant and my foot feels a little better. It's too bad that the Frakenboot doesn't fit perfectly. It created a small hole in my leg that is becoming infected. I'm hoping that heals so I don't need to go back to my regular doctor because we have enough doctor's visits scheduled this month. I'm getting kinda tired of them.

The one good exercise the orthopedic surgeon recommended is that I walk on the sand use my toes to play with it. I take this as a sign that the Universe is telling me to take a vacation.