May 2011. Little man here is 22 months old, almost two. He’s not smiling for pictures anymore, he’s holding his left hand to his side, clenched fist at all times. He’s closing his ears for no reason (no reason to us anyway) and he’s pretty much said goodbye to his “happiest kid on the block” personality. Me, I’m a wreck. Can you tell? Of course not, cause I’m ‘smiling’. I’m ‘smiling’ as I hear his (then) pediatrician tell us that all these issues are fine and that he’ll grow out of them. And I’m ‘smiling’ as I see my boy just turn into a kid that I no longer know . . . It may be weird to read this but truly an autism diagnosis, or even before the diagnosis, when your kid is regressing into autism . . . you’re left feeling like “who are you, and what have you done with my happy, playful, social, TALKATIVE, baby”?! But you don’t want to worry anybody, your husband, your family and yourself, so you smile. You tell everyone that he’ll get ‘better’.
So, what’s happened since 2011 and how do you cope? Because I do get questions at times from other mommies of recently diagnosed ASD kids, or even NT kids, they all have the same question. How do you cope? How do you do it?
ONE. FOOT. IN. FRONT. OF. THE. OTHER.
Sometimes you just have to remind yourself to actually do that. But yeah, that’s it basically. Just keep going. No other choice really.
Hubby and I will never know what it’s like to raise TWO typical kids with a 3 year age gap . . .’cause we’ll never know. But this weekend, one of our friend’s boys took a ride with us and sat in the back with our little girl. The conversation that ensued between them was . . . LMAO funny. At least to us it was, probably because we are so unused to it. You know, usually it’s one-sided conversations that are met with howls, growls, and ‘love jabs’ – Maria being on the receiving end of those jabs.
So M was saying silly stuff and basically being herself and her new friend, a boy the same age as her brother, was being the older, wiser of the two. And no, M did not see a lion riding on an airplane but she said she did and her new older friend was certainly amused. When hubby turned and said to me “Can you imagine all the conversations that would’ve taken place between M and P by now” I knew that this ride, the images and the words we’d hear along the way would stay with both of us forever. For the whole 20 minute car ride, the content feeling and bittersweet happiness that overwhelmed me was met with, of course, GUILT.
So that put me, and my self-diagnosed mild depression, into a spiral of what if’s and why’s . . .
Our boy is going to turn 9 in just a short while. He attends a Special-Ed school where the majority of the children are mild to severely autistic. I know I’ve said this time and time again, but it’s just mind-boggling how little the school board does to integrate these kids.
And it’s a shame.
P takes one med for epilepsy, another for his mood swings, another for his hyperactivity and a new one for psychotic behaviors. All these are standard meds for autistic kids like P, I’ve been told. How sad . . .
This weekend we all went to Maria’s school for an Easter activity day that was organized and we brought P along for a short while. There was food art, treasure hunt and just lots and lots of games!! Maria is super popular and is friends with all her classmates. As soon as she arrives just about anywhere all the little girls crowd around her and giggles and happy shrieks and jumps for joy commence! She has always been like this. So not the shy, quiet type.
Her brother, on the other hand, is friend – less. I’ve always wondered what it would be like if he were a NT kid, how many friends he’d have, what type of friends he’d have. Whenever I’m in a setting where there are other 8-9 year old boys I very discreetly try to observe their mannerisms: the way they talk to each other, what they say, how they say it . . . and I imagine my son in their shoes: kicking a ball around, screaming “goal” and just enjoying life to the fullest. I’m sure other moms of ASD kids do this too, I know they must.
But what was really interesting about P’s very short visit at Maria’s school is how happy he was. There’s no denying it! He knew he was in a typical setting and there were no grunty noises, no hands over his ears, no ‘weirdness’. He was happy and smiling and just wanted to ‘blend’ in with everyone else. Sometimes I wonder if that’s all he really wants in the end. To be just like everyone else . . .
Sometimes all I want for him, is a friend.
A few years ago, when I ran my first 5k at the Athens Classic Marathon, I wrote that I ran for my son. Today I ran the Half Marathon, 21k and once again suppported the Greek Society for the Protection of Autistic People, for my son . . .
But the thing is, yesterday I was a horrible mother . . . to my autistic son. He woke up, literally the moment he opened his eyes, and was a screaming, flailing, hitting, running MESS and I didn’t take it so well. I yelled back! A lot! When he would yell, I would yell back even louder for him to stop. At some point, I had a coughing fit from all the yelling, my throat felt like it would shut down. And my mind as well. I had enough! Yesterday, for me, is definitely going on the worst of our Autism Days list.
And then today, I woke up and got ready to go to the Marathon and I kept thinking if I was really going to go through with it. I didn’t feel ready to run 21k physically and mentally I felt drained. I felt guilt. I had treated my son like shit, I showed no tolerance, no patience. What kind of mom am I that goes and runs marathons in support of Autism organizations if I can’t have patience toward my own autistic son? And then there I was, and the shot was rung for us to begin and I had tears welling up in my eyes. For a good hour I ran with a trembling lip (trembling because I fought to hold back the tears) and the saddest eyes because I kept thinking of the way I treated him, of how I looked at him at some point. When I’m gone, I thought, will the person in charge of taking care of him, treat him the same way?
You can’t always say to yourself, OK it was a bad day – for all of us. P has his days and I have my days. But NO, parents of autistic kiddos are not afforded this luxury. Ever. Because the damage is irreparable . . . and I know he’s forgiven me but I will never forgive myself.
Oh my, how long has it been? Way too long! And it’s not like I haven’t had tons and tons of stuff to write about, especially about P. Well, most importantly about P. ‘Cause I can rant on just about any other platform about work and whatnot, but this here’s the place where I can really ‘talk’ to you about my beautiful boy.
So, we’re on meds. A cocktail of meds actually. Have I seen a difference, an improvement? Uhmm, not really and that’s what’s so heartbreaking!! I give him all this crap which is supposed to help and when it doesn’t I can’t stop giving it to him cause the doctors are like “it’ll screw him up even more” and I’m left feeling “WTF?” So, we’re still adjusting . . . so and so of this, and 5ml of this and the list goes on and on. He’s not as bipolar but he still has crying fits in between hysterical laughter. And he still bites and hits his hands. Not to mention that he’s begun running and falling on his knees. AND my kryptonite, swallowing air . . . which leads to gas and, as of late, burping. Actually, belching. As if he’s chugged I don’t know, 10 beers. That air’s gotta go somewhere right?And he’ll fart and burp and whatever else he’s gotta do wherever he is. My boy ain’t shy, you know. And he grunts, a lot. Like really, as if a bear is coming to attack you. So yeah, meds . . . what a life saver – not!
Today, we went for a ‘volta’, a little stroll cause it’s so sunny and beautiful out, just him and I. We stopped at a cafe and I got him a banoffee and he had a fit until it was served. The waitstaff were awesome though. We all laughed it off ’cause he’s so damn cute. Then, we went to the swings where he absolutely INSISTS on being swung on the baby swings. Fellow mommies were looking at me, and him . . . but he’s so damn cute! And after two hours of being out and about it was time to head home and on the way home I kept thinking of all the ASD kids I’ve met on this journey. Some were really quiet, timid, shy and aloof. Some are now in typical schools, and without an aide, from what I hear. The majority of them speak (!) My little man, my beautiful boy – this face which is impeccable and perfect in every way, and the biggest heart, this little guy has got it rough.
But he’s so damn cute!
I don’t know what is up with me lately. I’m an emotional rollercoaster/mess. I wake up crying in the middle of the night. I’ve been feeling lonely, even when surrounded by people. I’ve been feeling like I need to take a break; to be somewhere where I’ll be surrounded by loved ones, warm embrace of an older sibling, or something.
I don’t know. ..
I’ve been thinking about my dad a lot, and of my oldest brother who passed away 14 years ago. I miss them both. I wish they were here, just to freaking be here. I’ve been thinking about my son, and his future. I’ve been thinking about everything. Everything which has been making me feel so darn down and upset. If only I had a crystal ball and can look to see the future. Will I finally make enough money so I’m not always broke? It’s so pathetic, I know, but I still haven’t mastered this adult thing of making my monthly salary last one whole month.
Of course, the biggest thing on my mind is will my son finally speak so we can all be happy! I’m tired of seeing my husband stress and be angry all the time. Even our 4 year old daughter pointed out the other day that her dad never smiles! How sad . . . to be a little kid and pick up on something like that. I want to make her happy because I feel like she is picking up my sadness and worry and grief plus her dad’s anger and denial and her brother being who he is and the non-verbalness and shrieks. I’m just heavy with everything at the moment and trying to cope as best as I can and lately the best as I can is burying myself with work, finding even 10 minutes to exercise, daydreaming of happier/prettier scenarios (i.e. winning the lottery, buying a home, round-the-clock care for my son).
Of course, at home I am the mommy I’ve always been – happy, smiling, playful. It’s just that last night it kind of occurred to me that it was taking a great deal of strength from me to do that. I was pressuring myself to smile and reply with excitement to my daughter’s quirks and my son’s need for playfulness. I wanted to sunk in my misery and just be sad. But who can do that when your little girl is saying things like: “When I close my eyes to sleep tonight, I want to dream that I’m a mermaid”.
It’s just a funk, right?
I haven’t posted a dish in the longest time. I haven’t been really cooking that much though is why. Even with the holidays behind us, I didn’t cook much, I didn’t gorge on yummy holiday food. I didn’t do much except stress out and work. And if you know me, or follow my blog, you know that cooking and baking is my #1 De-stresser😊
I’ve been making my own version of pastitsio (baked pasta casserole) for about 10 years now. Its not complicated or hard to make. It’s a little time consuming though but easy to make in batches and ahead of time.
Today instead of making my version, I decided to try something different. I followed word-for-word Akis Petretzikis recipe which you can find below. It’s pretty awesome. It’s different. But this household is no stranger to DIFFERENT.