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.

Cooper Cat goes to Heaven

Last night hubby found our Cooper Cat slumped in the litter box. Then he noticed he was walking unsteady. So we crated him and brought him up to the dining room where JD was fascinated with having his buddy in a crate and in the dining room. For the past several years we've kept the cats confined to the basement and most recently to the heated garage and laundry area because JD loves to pull their tails and their fur.

Just before I took the kids up to bed I told JD to leave Cooper alone.
Me: "Cooper is sick. He's sleeping."
JD: "Oh no, he has to go to the doctor!"
Me: "Yes, he's sleeping. C'mon let's go upstairs, bath time."
JD: "Good bye Cooper, Cooper's going to sleep."

After a lot of excitement, the craziness of bath and bedtime, I took Cooper Cat to the animal hospital in Langhorne, PA. Two hours later hubby and I said good bye to Coopie Kitty as he went to sleep forever. It was very sad. As we each drove back in our cars, crazy thoughts go through your head. It's nearly midnight and I realize Cooper is the 2nd cat that I've lost to diabetes. I hate diabetes--it kills you, it ravages your body, affects all your muscles and organs, eventually shutting everything down slowly, you fill up with acid and liquid and its painful. People who don't take diabetes seriously are just plain stupid because it's a killer and completely preventable (Type 2) & treatable.

Last night hubby and I wondered how and when we'd have to tell JD that Cooper was dead. We decided to handle it as you would a typical kid. As far as we know there's no special way to tell this to a ASD kid, I'm sure there's a social story somewhere on this. But we felt JD might understand it if I explained at his language age. Plus he does seem to understand what "dead" is, not sure if he understands the permanence- but I think that's fairly typical at this age.

This morning as he's coming down the steps-
JD: "Oh no, Coopie is gone!" He didn't see the crate and was upset. I guess he figured Cooper would still be there. Although Cooper would normally be in the basement.
Me: "Yes, baby. Cooper is gone." Hmm, here goes. Deep breath, tread slowly.
JD: "He's downstairs?" Eye contact and hope in his eyes and I just want to cry.
Me: "No, he's in heaven, he's gone." Clearly doesn't know what heaven is, he's thinking. I give him a moment.

Cooper sleeping with Molly

JD: "He's with Molly? With grand mom?"  We gave our dog to my sister-in-law and her girlfriend at  Christmas. At first we explained that Molly went to live with his aunt at the far away farm. But he didn't understand who that was so we ended up telling him that Molly now lived with grand mom. We gave him a familiar face to go with the permanence of the change. So now he thinks all pets who leave our house go with grand mom-- don't ask, the mind of a 3 year old! You gotta use whatever works. He asks for Molly now and then and seems to understand that she's living with someone else now. I show him pics or videos that my sister-in-law occasionally posts online.
Me: "No baby, Cooper is gone forever. He's in heaven with God."
JD: "Coopie no want to go with God! I'm mad!"
Me: "Do you want a hug?
JD: "Yes, I'm sad. Oh no, Cooper is gone. He's going home." Home to JD seems to mean gone away. He didn't cry but he was clearly upset and very sad. Cooper was the only cat to greet him, the other 2 are kind of feral.

At school today, the 1st thing he say to his teacher-
JD: "Ms. Nicole, Cooper is in Heaven, he's gone!" Still upset.
I had to explain to her what had gone on 10 minutes before at our house. Deep breath! So that's how I explained how Cooper went to Heaven. And we're all still upset.

Cooper sandwiched between Benny & Jerry

Great Expectations

Everyone was talking and asking questions but no one was mentioning the White Elephant in the room. Those 2 hours were excruciating. I was cheering my son on, hoping he'd talk, make eye contact, instead he blindly went on inspecting toys, tossing them aside when he was done looking them over. We left that evaluation and walked to the elevator with JD skipping along with us, pleased as could be. I was struggling to control the tears determined not to lose my control in front of my son. There had been a funeral in that room. The death of the expectations, of the future I envisioned for my first born. Now we had a name for his speech delay, awkward movements, and all the other symptoms that we'd failed to pick up on. The diagnosis floored us. When asked if I was alright, I could only shake my head and hold my tears in with the taste of fear and despair in my throat.

Me and Josh at 1 month old

We are told to let go of our expectations with an Autism diagnosis. We are advised to accept the new reality. For a while, that's what I tried to do. Or at least that's what I said I was doing. In reality- I was just looking for new expectations, slightly less ambitious than the baseball player/ballet dancer/doctor/engineer that I envisioned married to a lovely girl and lovely children. But then I got mad! Why should we let these expectations go so early on? Why let them go now? Isn't it enough I'm worried about what the future will hold, do I need to let these dreams go too?

I got mad at Autism. At God. At anyone who didn't understand exactly what we were going through. At anyone who questioned any therapies or parenting techniques we tried. Didn't they understand that JD had autism and he needed consistency, structure, and calling his name repeatedly would not work if you didn't get his attention at his eye level first? Didn't they understand the rampant fear I live with? JD has ASD, the odds are stacked against my girls- preemies, older sibling with ASD. Of course I'm going out of my mind, sick with worry for what lies ahead for all 3 of my children.

You know what Autism?  You might take away good balance, agility, attention span, speech, health- but you will NOT take away our expectations. Let them die a slow death with lack of progress in the years that come, let life experiences beat my desperate expectations down. But I can NOT, I can NOT live in a world where I have no expectations for my son. It defies the laws of parenting. How can I be a good parent unless we have some goals to strive for?  Give up our great expectations would be like asking me to stop believing in my son, in my God, in my everything. I can't function or live in a life that doesn't have something to strive for.

For now I am hopeful that he can eventually integrate to a school with minimal aide, that he can graduate high school, get a job, meet a girl, take care of a dog. I just want him to be happy- to have joy. I want him to be treated with dignity and to be accepted because he's such a sweet, loving, and funny little boy who has amazing blue smiling eyes and a lot to say now that his speech is coming along. I may never see him ride a bike or watch him play catch, he may struggle to make friends at the playground, but I'm not giving up on expectations. Yes JD has ASD, ADHD, but why does that mean I can't have great expectations for his future?