The descent into ASD's dark side began on Monday. Who has descended, exactly? Well, Anna. And she's dragging me and Megan along with her. DH is probably thanking his lucky stars that he gets to go to work. I'd like to escape. I'm sure Anna would too, but we are stuck. This break...two weeks long and only 5 days into it, has so far been one long meltdown after another. Meltdowns not of the tantrum variety (which used to be a given), but of the sobbing variety. Anna's inability to control her emotional response has us all walking on egg shells this week.
How many ways can I say "this sucks"? The sobbing, the toddler-like egocentricity, the attempt to assert control over things out of her control (Megan gets the brunt of this because she will not be controlled)... the absolute inability to deal, the screams like an animal in pain when she doesn't understand why I'm getting after her for being nasty to her sister. Let me tell you how fabulous those are, especially when we are outside. She shrieks like I'm sticking her with hot pokers when I tell her it's time-out for being mean to her sister. I swear one of these days the neighbors will call the police about the blood-curdling screams coming from our back yard. I don't say "autism" so much anymore because it's really not terribly obvious these days, but I'm saying it this week. Hello, autism, how the hell are ya? Gosh I've missed you. Not.
And here we were, cruising along, Anna doing swimmingly at school. I was actually afraid she is doing so well that her school was going to kick her out and tell me it's time for her to be mainstreamed. And then Christmas break happens. I wish I had a video camera to record what's been happening at home, just in case anyone tried to tell me it's time for mainstreaming. The family has been asking lately...so when will Anna be mainstreamed? I keep saying NOT YET. Not before she's ready. She's doing well at her school because she has the supports to do well there! They make accommodations for her and it's working really freaking well, but that does not mean she's ready for public school (or even a private typical school). She's doing well with support. She will not do so well without support. And I have no desire to see my daughter crash and burn.
I can still see her fear. And I am fearful for her. Before she got the ASD diagnosis and early intervention started, Anna lived in fear and confusion, unable to communicate meaningfully with anyone or understand a world that was foreign to her. The neurologist called it ASD. The speech pathologist suggested Asperger's Syndrome. The preschool coordinator called it both Semantic-Pragmatic and Expressive-Receptive language disorders. The occupational therapist called it Sensory Integration Disorder, hypotonia, apraxia, and dysgrahia. She's doing a heck of a lot better, but the fear is still there. I can see it in her eyes when she runs into a social situation she does not understand, or when she does not know the correct answer to give to a question. I asked her today, after a particularly bad time-out session, how I could help her. She looked at me and said "I don't know".
I don't know either. I'm afraid in my search for understanding, she will implode, and I will explode, both of us with fear and frustration.
13 comments:
You are all in my prayers Erin...hope it gets better for you.
I am so so so sorry, Erin. I am praying for you!
I'm sorry things are so tough for you all right now.
Erin, Is she able to tell you when her throat hurts? When my daughter visits "the dark side" (nice description, very accurate), it's almost always some kind of mouth pain, either strep throat, a sore red, throat, maybe a sore allergy throat (that is not bright red), a toothache, a loose tooth or an ulcer or sore in her mouth somewhere. I know to look in her mouth by the dip in self-regulation I see from the outside. I am a med-as-a-last-resort kind of mom, and yes, in times like you describe, I'll give her motrin for the pain and usually see a big change in ability to cope.
Praying for you right now. And sending a cyber hug.
Pen
Erin, it can be ear pain or ear pressure, too, that my daughter is not aware of that can send her into the "other" child, the one whose ability to self-regulate plummets.
Sometimes she can tell me about pain. Sometimes she can't and my first clue is the behavior that's slid backwards.
I can ask her to "Point where it hurts" or "Point to the ear that hurts" and get a lot of information, as opposed to asking, "Does your ear hurt?" and "Do you have a headache?"
I fully understand the feelings you are describing. Wish I had answers for any of us or for our children. Sending you prayers and good thoughts and a wish that you might have a break from the meltdowns; I know how exhausting it gets— for everyone. *sigh*
Here's to better days ahead.
Thanks, everyone, for your comments. I am imagining all of your positive energy entering my home from the computer screen! Maybe it's helping already, there have been no meltdowns yet today!
Penny, the pain thing is interesting. Last night Anna was coughing a lot. I think it's more than that, but maybe that is a contributing factor.
I have given my girl a "trial" dose of motrin when I could mot figure out pain. That's pretty radical for me (meds as a last resort mom). If her disposition and ability to cope improves, I assume she's hurting somewhere that she can't identify. If it doesn't improve, I don't give her any more motrin. Epsom salts baths are sometimes helpful during weeks where there are many changes in routines. I am not a doctor and this is not medical advice.
I'm with you on the meds, Penny. Sometimes I resort to them too. Epsom salt baths sound good, I need to try that. I used to give them to her to help her sleep but it didn't help too much so I stopped. But calming in the face of routine changes...I will have to try. I gave her a bath last night and that calming sensory experience helped her feel better. Thanks for your non-medical advice. :)
Erin, I can so relate to what's going on in your house. For us, it started the week before break, so we're on Week 2 of this madness. And it is ROUGH. It's not constant insanity, we are having a lot of good times and fun, but when Charlotte gets upset, it's a HUGE upset.
I am hearing the same thing from other ASD moms - maybe it's seasonal - everything is topsy-turvy this time of year and it's just a lot for them to process.
By the way, do you read Drama Mama's blog "like a shark"? If not, hop over there to read it. You can find a link on my blog.
Oh, and I meant to say: Merry Christmas to you and your lovely girls (and hubby too!).
Hi Goodfountain,
I will go over to your blog and read that link now, thanks. It's not all bad here either, but the past few days have been extremely taxing. Maybe it is that time of year, or just the short duration of the break. Two weeks into summer break and things settle down. But this winter break has been a doozy so far!
Merry Christmas to you and yours, too. :)
Wow, just read that post. Everyone else needs to read it too:
http://likeashark.blogspot.com/2009/12/power.html
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