We have it good, you know. Others, not so much.

I know I’ve been sort of down lately, and worrying a whole lot about P and his bloated tummy, and my being broke and little Maria’s christening coming up and me wanting to be able to have everything I have in mind and being good at my job, and everything really! It’s been sort of a tough couple of weeks for me, psychologically and physically too because sometimes the demands seem to literally weigh me down.
But, today, on my name day, I spoke with someone and all of a sudden I got to thinking that it’s not that bad. And that it could be worse, and there are people out there that have it much, much worse than us, and all that which we all think when we’re down and complaining about this and that and all of a sudden we’re faced with someone, something, some person or persons living and facing obstacles that seem like little tiny ant hills compared to what you’re dealing with. P’s autism is no molehill but at least he chews his food and uses the toilet and UNDERSTANDS. I came home from work today, and everyday, and he runs to me and wants me to take him up in my arms and hugs me really tight. He does this every day, he’s so darn happy to see me. He smiles this really wide smile and it makes me so happy to see him so happy. I don’t know what I would do if my kid didn’t react this way. I think I’d be really sad. Yet, there are moms of autistic kids out there that don’t get this, this connection, this bond and that must be really upsetting.
I just really appreciate moms of special-needs, special-capabilities, kids today. I really, truly do. I think they’re heroes.

The stim that’s put all the other stims to shame. A downer post.

P has aerofageia. His tummy is filled with air because he swallows large quantities of air. It sounds simple but it’s really really not. It’s a stim. He does it to/by himself and it’s the reason he’s in pain, has such a bloated tummy, is constantly burping and passing gas and why tonight he literally HOWLED from the pain for over an hour. His OT suggested some yoga poses that may help in alleviating the pains associated with aerofageia and so far he’s been pretty good at letting me help put him in the various poses (child pose,etc.) But after hearing him and watching him wry from the pains which I can only assume must feel like stomach cramps and burp so loudly and cough that it was as if he would ultimately vomit, I found myself feeling so lost and helpless, and hopeless, that I just wished earth would just swallow me up so that I didn’t exist anymore. I caressed his tummy and his back but there was not a single thing I could do to truly help him and that just kills me. Maria left her dolls and came over to me sitting at the kitchen table with my head in my hands and asked me if I was sad. I replied that I was very sad because her brother is sick and I can’t do anything to help him. And then she caressed my arm and looked me straight in my eyes and no words were necessary. Compassion from my two-year old sometimes is the best medication in the world.

When Panayioti was 2 and we were still trying to figure out what was ‘wrong’ with him. Why he stopped talking mostly we went to check his hearing of course. It was our first exam. It’s what his develpmental specialist suggested we do before she could say if it was autism or not. I hoped he was deaf, or to put it more lightly, that he had a hearing problem that a good-quality hearing aid would solve. And then bam! Problem solved. Nope, nothing wrong with his hearing. Autism.

This week when we went to get his tummy checked out to see if he’s bloated because of drainage issues that a routine surgery would solve, I hoped that it would be that. Nope. It’s a stim and like all stims they do pass but you never know when or if they’ll come back. And in most cases, some do come back. His saliva playing is an on-again/off-again stim that totally grossed me out but is NOTHING compared to THIS. This is hell. This is watching your kid gulp, and gulp, and gulp, air continuously and no matter what we say to him it’s as if he can’t even control it. Like he can’t help but gulp air all the time. He does it as soon as he wakes up and was gulping air the moment I was putting him to sleep tonight after the howling subsided. It’s the freaking mother of all stims. I hate her.

Gulping air: My kryptonite

For the past couple of months P has been gulping air. Yup. Making really loud gulping sounds. Just going about his day gulping air. It’s been driving me nuts. At first that is. Now, it’s worrying me sick. But, the past two weeks that he’s been doing this his stomach has been really, really bloated. We went to the pediatrician’s to see if his stomach is so bloated because of this air-gulping ‘tick’ that he’s been obsessed with doing lately or because he’s generally constipated, or of something else much worse medically. Basically, we also just want to know why he looks so pale and sickly even though he’s such a good eater. I mean, he eats everything! His fruits, his veggies, his proteins, his milk. Everything. He doesn’t go to the bathroom that regularly but he goes. And does his bloated tummy have anything to do with his pale complexion, and dark under-eye circles???

There was the time of the saliva playing and dripping, and we lived through the poop-smearing that drove me out of my mind. None of that though made me worry about his health though. Kosta has a little nephew whose stomach was always bloated like that and it turned out that the litte kid needed a kidney transplant. Thank God he’s fine now. His parents had to move to England for a while to be near the hospital that treated him. He’s doing really well now and the last time I saw him, his name is Panayioti as well, he looked so healthy. Rosy cheeks and everything. Bloated tummy no more. Is my kid that sick??? We’re getting his blood work back tomorrow and he’ll be seen by a gastroenterologist at the hospital. He will also undergo a semi-invasive procedure to see what’s going on in his intestines. I hope we’ll get some answers tomorrow at the hospital because I’m so freaking worried I haven’t slept more than four hours a night this whole week. I just wish I knew what was up with my little man . . .

The greatest gift we gave our (autistic) son is his sister.

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I read somewhere recently that the greatest gift you can give a child is a sibling. Without a doubt, the greatest gift we gave our son is his little sister. You have to live with us to fully understand and see for yourself the many, many ways that Maria has helped, and keeps on helping, her brother. She helps him with everything. I’ve written before how I feel guilty sometimes that our different home situation may be stressful for her at times, but then I think about how much she loves her brother, and shows it, and all that guilt just goes magically away. She’s my rock, she really is. Today as I turned to look at them sitting on the couch watching TV Maria returns my gaze and says” Look mama, Panayioti is sitting with me” and her face just lit up. She loves it when her brother lets her hug and kiss him and hold his hand. She wants to play with him constantly, so much so that her 2 1/2 year old mind can’t comprehend sometimes that he just doesn’t and then she hangs her head low and pouts her lips. But then, with a gentle push from me Panayioti is back in  her arms and she’s all smiles.

Today she asked me where her Panayioti is (that’s what she calls him: her Panayioti). He’s out with baba I answered. Where’s my baba?, she asked. Baba went out for a little bit with Panayioti Maria mou I answered with a smile. And then then next question left me dumbfounded. “Where’s your baba?” See, my baba (dad in Greek) passed away when I was 7 months pregnant with Maria and Easter is always just a little bit rough on me since we always went up to the village to spend our Easters with him. “He’s up in heaven Maria, high up in the sky” I said and I pointed to the sky from our window. “I can’t see him” she replied 🙂 She floored me. Her truth, her insight, her words. Having a non-verbal child who has such a hard time communicating and feeling so helpless and frustrated as a parent and then hearing these words from your typical child . . .  what can I say? Kids make our world better.