Kosta and I were looking at old pictures again of Panayioti. This time we didn’t get sad, instead we were laughing. We used to take some really fun and funny pictures. He was always doing something goofy and chuckling to himself. For his 1st birthday a good friend of mine got him a farm house out of building blocks and he used to love to tear it apart and put it back together again.
I’m going to just put the blame on exhaustion. Exhaustion from having to keep an autistic toddler constantly occupied with something or else! Or else he’ll scream, run back and forth, put his hands into his pants, and just make a mess. So yesterday around 5 I suggested we all get ready to go out for a stroll. To get out of the house because the screams were driving everyone insane! Sure, hubby agrees and goes to get dressed but then for some strange reason he decided to put the laundry in, to separate his blacks from his whites and so on. Why? Why man? So it’s only natural that I start the bickering and whining. Right? I mean, he’s not deaf nor blind. He can see that our little guy is in need of a change of surrounding and I’m about to pull every hair off my head one by one from listening to his shrills. He yelled first, though. I may have whined and told him to get ready at once, but he yelled first. Anyway. It got bad. So bad our little girl started crying and Panayioti had his hands over his ears, but smiling, which he does I’m sure unintentionally. I plopped both kids on the stroller and headed for the square. I bought them sweets and let them ride the merry-go-round thingys at least 10 times. Then after almost losing Panayioti in the crowd because he ran from me, sprinted like a Marathon runner really, I figured it was time to come home. I was beyond exhaustion. And when I did there were no apologies exchanged just one little request from me. We’re both adults. I don’t want our kids, Maria especially, to be subjected to such arguments. Arguments which include objects being thrown back and forth. So, if we both realize it’s not working out, let’s end it. That’s all I ask of him. He just walked out of the room. That was his response.
right down the street from our house. The whole building process, digging dirt, breaking apart the building that was once there, the tractor thingy backing up, is making A LOT of noise. Noise that on this rainy, windy day I’m thankful for. It’s actually drowning out the little guy’s jungle man sounds. I was sitting out on the balcony drinking my coffee and having my cigarette and I could barely hear my son’s shrill/shriek. So, dig away, excavating tractor thingy. Dig, dig away!!
My neighbor’s daughter is a child psychiatrist specializing in autism spectrum disorders. She’s also a first time mommy to a little boy around Maria’s age. Last summer when I first met this neighbor of mine, an elderly woman who’s now a retired Chemistry professor, she told me that if I ever wanted to speak to Anastasia she would be more than glad to give me her phone number. I thanked her but politely declined because how many more professionals am I going to speak to?! But then, yesterday at the park she was there and I was there with Maria and we started talking. And of course I told her about Panayioti’s explosive regressive behavior the past two weeks that’s gotten so bad I think our building is going to fill out some kind of petition to have us kicked out. She listened and she paid attention to every word that came out of my mouth, I could tell I had her attention 100% which is awesome, and she said something very simple. He’s gotten unorganized. He doesn’t miss his teachers, which is something that crossed my mind. When he’s in school he knows every second of the day what’s going to come next. He knows when they’ll sing and play, and when they’ll eat. If he gets out of control he knows he’ll have his sensory issues addressed at once. He knows he’s safe. At home, and even though I’m doing the best I can with the PECS system that we’ve incorporated, he is out of sorts. Maria is there too taking up mommy’s attention and he is also jealous. This behavior is typical she says of kids on the spectrum. I shouldn’t worry too too much about it but definitely consider taking another trip any time soon. Which basically means another summer in Athens. Last summer Panayioti and I (actually I went for just 3 days while my father-in-law stayed behind with Panayioti) didn’t go to the village in anticipation of such behavior and if Easter was any indication of what’s to come, it doesn’t seem likely that I’ll be spending summer with my in-laws, husband or baby girl this summer either. The short conversation with Anastasia helped me. I felt instantly somewhat at peace. Lastly I asked her about his speech. He’s turning 5 in July and doesn’t say a single word, should I just give up every hope? And then she said something about new studies and how some non-verbal children start speaking around 6 or 7 years old. So two more years of this I thought. As long as he gets his point across, effectively communicates in some non-verbal way whether it be PECS or sign language then maybe things will be ok. As long as he’s non-verbal and still hasn’t mastered some other way to communicate he will always be in a state of agitation, and his parents will always be in a state of frustration. So that’s it I guess. She helped me in some way just by lending a professional perspective and as somebody who in a way ‘gets’ it.
Easter was a fucking disaster this year. I’m not even going to asterisk the word fucking because there’s no point and because I want you to feel the full effect of how bad it was. That’s it. That’s all I wanted to say. But wait, I’ll elaborate. There were so many things, so many stimms, so many different sounds coming out of Panayioti’s mouth, so much hand flapping, so much running back and forth. He even got aggressive. “Who are you?!” I yelled at him at some point. I am not proud of myself for yelling and completely losing my cool, and smoking almost my whole pack of cigs in one day but there is only so much I can do at times. I twirled him around the room until I almost lost consciousness and flipped him upside down at least 20 times because that’s what he loves the most. I gave him all the physical stimulation that I could do because only then does he somewhat calm down but then five minutes later he’d be yelling and running back and forth again. And to top it off, we were in the village, away from our everyday surroundings. There wasn’t a single moment that he was cooperative and I tried everything. I took him out, I took him to church, I took him to the beach and to the playground. I managed to even take a few pictures where he ‘looked’ serene just to fool you, and to fool myself as well but it didn’t work. He was off, and still is. I am counting the days, hours and even minutes until school starts again and praying to every god that there is that he’ll find his balance again. This thing where he regresses whenever school is out has taken its toll on me. I am not happy, I am not even close to being my old self again and the one person I feel most sorry for is Maria. All day long she hears arguments between her parents and Panayioti in his own little world just screaming like a lunatic. Did I mention he ran towards traffic and almost got run over? Or how ’bout when he ran behind a car as it was parallel parking and had it not been for his dad would’ve definitely been hit. His hand is all swollen from him hitting it against the window all day long. He ate constantly, munched on paper even when we weren’t fast enough in giving him his meal. I purposely bought him jeans with suspenders to keep him from putting his hand down his pants and playing with his poop/butt. But still, we had two instances of poop smearing. He tried to strangle his little sister and slapped her really hard once when she approached him to give him a hug. He tried to jump from the pier into the ocean. Yesterday afternoon after hearing him yell/shriek all day long Kosta asked me to get him ready for a ride somewhere. I asked him where he’s taking him and he replied “I don’t know, probably drive off a cliff somewhere”. What else can I say? It’s been rough. Welcome to our Autism reality.
Panayioti was born in the summer of 2009 so Christmas of 2010, when this picture was taken, he was 18 months old. Close to the age that my baby girl is at now (17 months). I’m doing that vicious and depressing thing again where I look at old photos and videos of him before he regressed to try to pinpoint the EXACT time it happened and I still can’t and I still can’t for the life of me understand why such a healthy baby boy would get such a raw deal. Why turn a kid who’s progressing so much, speaking, pointing, playing, why turn such a sweet little kid on his head and just throw out everything he’s learned?! Anyway. I didn’t intend to make this into some sort of rant. I am just frustrated today because Panayioti is out of school and when he’s out of school he’s not his best self and I tried to engage him, to play with his little sister, to bake cookies, etc., but he just wouldn’t get out of his ‘zone’ so I yelled at him. I’m going to make an even bigger effort tomorrow, probably include the lentils that he loves to play with so much and just let him spread them all over the floor if that’s what makes him happiest, because it’s just the three of us during the day and time just does not fly sometimes. I hope he knows I love him, even though I yelled at him. I hope he understands at least that much.
All day long I hear alienese (what I like to call the sounds that come out of Panayioti’s mouth: the didi’s, the lala’s, the humm’s, the siren-like sounds, the george of the jungle sounds, the list goes on and on). But there are moments where it’s eerily quiet, at least in terms of alienese. Usually the sound of running water accompanies these ‘quiet’ moments. This is what I came to find him doing today. One more second and he would’ve gotten in the small sink. I suppose he felt the laundry detergent needed a washing too. The water is scalding too! Heat does not affect my little super hero. We should start calling him Achilles. He can touch hot water, hot pans, burning stovetops, lit up candles even blowdryers and will not so much as blink.