To Respite or Not to Respite - that is the question

Sissy's latest respite jaunt was paid for by her waiver. All told, we've had 8 days in the last five weeks. It has been so relieving to have time without her insanity, time to recuperate, time to sleep, time for The Dad to get away, time to have family outings without chaos, time to be a functional family without her attempts to tear it all apart because function = death for RADishes.

I've enjoyed being reminded that I'm a capable adult and parent, even of challenged AB. I've been comforted by the fact that I can influence my children positively and that other people's children will gladly and willingly take direction from me without ado. It has been reassuring that WG and AB are perfectly content with themselves, fully trusting me and even being helpful, kind and compassionate without prompting. That has been pure bliss, I assure you. Receiving unprompted back rubs and physical affection from emotionally healthy children is amazing!

It's been discouraging to know that while Sissy has been away, we've not missed her. Not one iota. I'm disheartened to learn that I'm disassociated from my own daughter and filled with angst and ennui when I count down the hours of her return. I thought it was my own personal struggle but today I was saddened by AB's anxiety as he verbally counted down the time, announcing how much time was left until Sissy's return every five minutes. He started at 6 hours left.

It was a long afternoon.

In the last nonconsecutive eight days of respite, I've been fortified and resolved. The truth I've come to accept, however lamentable and perhaps even despicable it may be, is that I am not a mother to Sissy. I am her care giver. I know all my diehard RADs-can-be-healed readers are silently grimacing at these words but for me, it is more emotionally damaging to pretend that after 10 years of parenting I might still have the hope of teaching Sissy to attach. It is safer for all if I assume the role that is least triggering and in this case, it is simply, care giver. The stark reality is that Sissy's regard for me is the same as the regard she has for her respite provider, we are faceless, emotionless drones that exist to serve her needs, wants and desires.

The only difference is I get the maelstrom of RADsing behaviors when she returns which begs the question? Is respite worth it?

Ten minutes ago as Sissy pestered, whined, yammered and complained about a toe nail that just had to be clipped, I observed her actions without emotion. She angrily picked and picked and picked at her toe, insisting it was a huge problem for her. Cool and calm, I asked her to please show the offending toe to me and I discovered that on the same foot, she had a flaming red, infected toe in addition to the one she was fussing over.

"Sissy. What has happened to your toe?"

She explained that she pulled the entire toe nail off while at respite. Pulled it off at bedtime. It was bloody, she got care from her respite provider, she rejected that care by removing the bandage, etc. RADsing while with the respite providerI thought. yanked it off at bedtime. classic. wanted to be up. Anxious, seeking attention. self-mutilating behavior. mental note - tell the pdoc, etc. Such were my thoughts. No "OMG! MY POOR BABY! LOOK WHAT YOU'VE DONE!!" Just, "Sissy, please sit next to me and put your foot on my lap so I can determine if you need a doctor."

It's bad. Let me tell you. She will likely need an antibiotic if not a cauterization. This isn't the first time she's done this to her toes or fingers. I'll try soaking it in Epsom salt tomorrow but yeah, she's done it good this time. "Sissy, repeat after me." I had her repeat the following:

I'm going to be 11 next week.
I'm old enough to know that I should leave my toe nails alone.
I'm old enough to know I should not hurt myself this way.
I'm old enough to know that hurting myself means I will have to see a doctor.

She repeated and then sobbed about the doctor part.

"nope. you're not going to do that crying jag. I'm not feeling sorry for you. This was your choice. So stop."

She stopped immediately, proof that the crying was another attention seeking ploy. Then she whined, "I can't stop! I have to do it, I have to pull off my toe nails when they bother me!"

"Wrong. you can stop. It's a choice. Go to bed. We'll see what it looks like tomorrow. Then I'll decide what to do next. But it will probably need a doctor's attention."

While we talked I'd patched her up, both toes (because the second toe was well on it's way to infection as well). She hopped off the sofa and began her chitter-chatter nonsense talk about whatever happy-go-lucky topic she could come up with to deflect and keep my attention.

"no. bedtime. quiet."

chatter chatter chatter

"Sissy. Bed. no more talk."

"yes ma'am" and off she went. Followed by more chatter and snorting of her imaginary stuffed up nose.

"Stop. be quiet. Close the door."

*snort snort snort* of the nose which I ignored. I thought to bring her a tissue box and then nearly slapped my hand at the thought. don't buy into her crap, mom. let her snort all night if she wants to. don't give her the negative attention she's seeking because bringing her a tissue box would have been a death trap. She would have fussed and raged about the tissue box and how she doesn't know how to blow her nose and doesn't need to anyway and on and on and on...

But what did I REALLY want to do when my child came home? Hug the stuffing out of her. Tell her how much she was missed and how glad we were to have her home. Shower her with kisses and affection, offer to brush her hair, pet her and snuggle with her. But I couldn't do that. It would have caused a rage. Instead, I made her bed and brought her a snuggie while she watched a christmas movie with her siblings.

How I longed to cuddle her! But I'll look for that opportunity later this week when the RADsing nonsense from a weekend in respite has abated.

And what became of AB and his anxiety about Sissy's return? He hugged her tightly around her head (a classic AB hug - he won't cue for appropriate hugging - welcome to ASDs), he stimmed a lot until I was batty and then he put himself to bed without saying goodnight. He required lots of hugs and rubbing and soothing talk today. He is torn. He misses his sister but he is so relieved to have her gone. It breaks my heart to see him struggle so much. It's hard to help him understand because of his own limitations. I try to teach him what I teach WG but often it is miles over his head. So I give him love, patience and understanding in spades. Today while we snuggled in my bed, I realized that most mothers don't snuggle with their nearly 10 year old sons and that our demonstrative affection for one another might seem odd and maybe even inappropriate. But truly, AB will probably seek such affection at the age of 30. At some point I'll have to draw a line about our snuggling because it really will be inappropriate but right now, I don't see the need.

WG and I had a talk earlier in the day about Sissy's return so she was prepared. I think WG has gained a lot from Sissy's absence. She's coming to the same realization that I am which is Sissy will never be whole, never be functional, never be what we hope and dream she'll be. And we can go on being kind, compassionate and forgiving despite it. WG and I made three rules today.
#1 - when Sissy comes home, we can still have a good attitude like we've had while she's away
#2 - If Sissy rages, we'll ignore it and not get aggravated too
#3 - we will try hard to be kind to Sissy even when she's mean and nasty to us

I went on to tell WG that since Sissy has such a hard time remembering how to behave that WG can help me teach her what is right too. WG liked that idea. "Yeah. I can just say, 'Sissy, remember. Say please and be polite, ok?'"

"Exactly! I need your help teaching Sissy. It's a hard job and as her family, we all need to work together to help her."

"But mom, what if I forget?"

"WG, I'll probably forget too. So let's agree to remind each other, ok?"

"Yeah! That's a great idea!"

How refreshing to have an NT child! Really, it is such a relief to have a child that thinks, behaves and speaks like regular kids do. I hope that one day very soon, WG will rise above this and soar to the amazing heights she's capable of. I hope she grasps hold of the truth that she can have challenged older siblings and still be smart, vivacious, talented and accomplished. I hope continued respite helps her gain that ground in giant strides.

To respite or not to respite - that is the question. I need it. AB, WG and The Dad need it. But the price we pay afterward may not be worth it. It's a tough call. Tuesday we have a meeting with her waiver team to review the money left and how much we still have to spend on respite.

Right now, I'm not really sure what choice is best. But one thing's for sure, I'll be making the choice that is best for the four of us and not what is best for Sissy. That ship has sailed. Survival in this family no longer rests solely on what is in her best interests. If she'll self-mutilate with her respite provider, she'll do the same anywhere with anyone. But it's nice knowing that for a few days a month, the rest of us won't have to deal with it.