Never get a break

Ever feel like you can never get a break, that the perpetual black cloud is following you around? JD's fall IEP is just about finished. I just have to sign and mail back. His school is being increased to 4 half days per week (from 3) and we are stopping Applied Behavioral Analysis. So for the most part nothing is urgent with his school and therapies. So I should get a break in between meetings, phone calls and evals right?
Guess I should head to the beach with a nice little umbrella drink in my hand. Except Apple's IFSP is coming up in 2 weeks, her OT wants to discharge once she walks & her caseworker wants to close her services. What- end her services? Let's recap what some of the ongoing medical issues are: The cause of her anemia is still unresolved. She still has not been cleared from the neurologist. She still has hypotonia on her ankles and hips. The hypotonia scares the crap out of me. Immediately I think Fragile X and Retts Syndrome. She still favors her left and if I don't stretch her out during the day, her neck does not achieve complete rotation. She's about 85-90% range without continual stretches. I know she'll always have some form of torticollis- and hopefully it's not the spasmodic type. She's still not walking. She just got her sure steps on Monday. Her speech is behind when compared to her twin sister and she gags very easily when eating which leads me to suspect the torticollis might have affected her jaw muscles. Recently she has started smacking her head with her hand and then she laughs when I tell her not to do it. I don't know if this is just a new game or a possible stim. We're on a wait list for the developmental doctor at Children's Hospital. I don't want her to be discharged from medical assistance via loophole (medical diagnosis v. need).  It took forever to get it approved, I'd hate to go through that process again.

Then I laugh at the absurdity of my worry. Because if there is something else going on besides torticollis, the freaking medical assistance and early intervention services are the least of our worries. Funny how torticollis was minor and how it would be treated and cured quickly. Here we are at her annual IFSP and I'm worried about what her 1st eval at Children's will bring. I feel another big storm cloud coming over the horizon and I pray, I am praying that it passes, leaving Apple unscathed. Please pray with me.

Any developmental delay is a two fold worry for my girls. 1) they're preemies so they're already delayed. Sure it's late term preemies at 35 weeks so no major health complications, in fact they left the hospital with me, 2 days later. But they are still preemies and have been delayed by about 1-3 months. 2) Older sibling with ASD. They are starting to mimic everything JD does. But how much is mimicking what they see v. a possible stim?  (i.e. Apple smacking the side of her head, see above). 3) they're twins and they're developing at different stages. It is hard not to compare them to each other and wonder why one is behind. Cems has always spoken more than Apple. So when Cems is babbling and starting to speak in 2-3 word phrases, when she's mimicking and repeating what she hears I worry why Apple isn't catching up. And then I worry that Cems repeats everything like a parrot. Is this echolalia or typical baby developing speech. Is it too early to distinguish?

Why this fear? I see a lot of siblings with ASD, ADHD-- there does seem to be a hereditary/genetic component to it. Many of my autism mom friends have multiple kids somewhere on the spectrum or with ADHD. My deepest fear is that all 3 would develop ASD. I understand why some parents choose not to have other kids if they get the diagnosis when they only have 1 child. Because this fear for the twins is awful. It's insidious. It's horrid. I wish someone would cosh me over the head and tell me to stop it.

When is it just a normal (can it be called normal) delay v. an indication of ASD? When should my ASD radar go on alert since it clearly failed me with my son? I am always on alert- hyper vigilant. When is the next shoe going to drop, what comes next, what fire should I attend to next? Damn you Autism anxiety, I don't need this crap! I'm shaking my fist, furrow my brow, and get in my fight club mode. Whatever that is. Really, secretly, I just would like to know when to go into a fetal position and cry. Can the dark cloud called fear and anxiety go away? Sigh.

Good night dear friends and fellow Autism Parents. I'm going to shower and go to bed, make hubby hold my hand and let me cuddle until we both fall asleep. It is nice to have that reassurance at night, when these fears just swirl around my head. Cuddling is my favorite part of the night because I know we're together and hopefully, God willing, will face tomorrow and whatever cloud is coming, holding hands. I don't even mind when his snores tell me he's fallen asleep while I talk, again.