One foot in front of the other

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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.

“You did not see a lion on an airplane”

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 . . .

How sad. screenshot_20180504-2009131.jpg

 

A friend for my son.

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. black-and-white-boys-children-277477

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.

I am such a bad mother, sometimes

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 . . .20180318_180446[1]

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.

Bearing my soul . . .

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?

It’s not easy. Seriously, do not be fooled.

I wrote an article recently (which you can read here) in a column titled 24 Hours Mom for Talk magazine. Each month various mothers (working, single, stay-at-home) contribute and write about their day. I was asked to write about my day raising a child on the spectrum and all that that entails. It was easy to write because there are so many activities that P takes part in (Dog Therapy, OT, Daily Living Skills, etc.) and if there was just one ‘criticism’ which I received it was that I made everything sound so simple and easy. It was a very positive article because I write how despite always being on the go, whether at home or at work, I have help from my in-laws so I never feel overwhelmed. The thing is, it’s not easy.

P is on Christmas break from school and his OT sessions. Which means two weeks of no activities whatsoever. Which means that my in-laws have him at home for 10-12 hours per day. Which means that my mother-in-law blew her fuse yesterday and all but broke down in tears as I went to pick him up. He’s too hyper. He’s too aggressive. He peed on himself. He broke the lamp. She went on and on. I felt so bad for her, for him, for all of us. Because although I love him and I know that his outbursts usually mean that he’s bored, or hungry or not getting something which he needs, like fresh air or a change of scenery, I feel bad for ‘dumping’ him on her while I’m at work, in my comfy chair going on my lunch break, etc. My work stresses are nothing compared to the stress of keeping a sensory-driven kid from eating soap or from keeping his hands out of places they shouldn’t be.  Her job is so much harder. This past month alone he’s put so much stuff in his mouth, something he hadn’t done since our initial phase of ASD. He even licked the countertops in the kitchen. He’s been whaling a lot too and giving little ‘love taps’ on Maria’s head which I know for a fact hurt because he does it to me too. Despite this, he has improved in areas such as concentration. According to his teachers at his school, he’s much more concentrated in the tasks he’s given. I pray to God that this is due, in part, to the homeopathy medicine we’ve started a month now. We visited a neurologist/homeopathy doctor a month ago who prescribed homeopathy medicine for him. We’re due to see him again next week and maybe we’ll be given something else or maybe we’ll wait out to see if anything else improves except his concentration or if he needs a change of meds. I will definitely bring up the various sensory/behavioral issues that have been going on.

So there you have it. It is not easy. I may, by nature, be positive and seem upbeat and cheery but it does not take away from the fact that I am scared to DEATH of what autism has in store for us.

I’m mostly mad at myself. A lot mad.

Seven, not six or five, but seven (7!!!) vaccines at 4 months old!! I’m no expert, but just somewhere deep inside me that just feels like A LOT!! And to top it off, I’ve met another mom recently who used to have the same pediatrician as us and her son is on the spectrum as well. Not to mention, that while we were on vacation when P was a baby he got sick and we had to visit our pediatrician in the village and I just remember her shocked face shen she saw how many he had done at 6 months. So, for about a week now I haven’t slept and I’m just curious how many other mommies out there also have autistic children who used to, or still go, to our old pediatrician?!

I’ve mentioned in one of my very first posts that the reason we stopped going to her was because of all the red flags our little boy was raising and she would just brush every single one of them off by saying “this is what boys do, they talk, then they stop, then they start again”. In what medical book did she learn that exactly, cause I haven’t seen that anywhere!! Still, I don’t think she did it out of malice, just her stupidity caused us months of therapy and maybe just maybe if we had started sooner we would be on a different path right now. Hubby, on the other hand, does not want me to bring the subject of vaccines up at all. He says what’s happened, happened and we have to move forward. So, why is it killing me so much? I remember cause my niece was recently diagnosed with Asperger’s at the time that I kept looking for clues in P like eye contact, and turning to the sound of his name and walking on tiptoes and being happy around other kids and he would hit those milestones, and more, like a champ!! No mommy was prouder of her little man than I. Early videos and pictures on my FB page prove just that. I was so proud of him. He was such a good little kid. So, am I not proud of him anymore? Is he not still such a good kid? Yeah, I’m still proud of him. I’m proud of him when he manages to say “bi” for biscuit and “ka” for kaka. But my heart sinks when he reaches for the soap and eats it. Autism fucking sucks. I love my son to death but I do not love, even for a second, Autism. Especially P’s type, the non-verbal, hand-jerking, soap-eating, deodorant-licking, sireny-sounding Autism.

And just to conclude, cause I’m just getting madder and madder every second I type, did I mention my niece’s Asperger’s diagnosis? Did I tell her that epilepsy runs in the family as do a host of other developmental delays such as speech delay? Y -E-S. Because now I know that when there’s a family history of developmental delays it’s good to stave off vaccines for a while. Sure, now I know this, but I didn’t then. I mean, where was this literature back in 2009 and 2010 when my baby was being bombarded every single fucking month? For all the reading I was doing, I did not come across this anywhere. But you’d think a pediatrician would, wouldn’t you?

You’d be wrong.

*Serious side note: Just because my child may or may not have been affected by his vaccines DOES NOT mean your child will be as well. I do not want to sway parents or affect personal decisions in any way whatsoever. Our son developed regressive autism at 2. I am just a mom of an autistic child who is looking for a cause/answers.