From the moment we arrived as nude babes, we watched with keen eyes and spent our entire lives learn¬ing about the world around us. We got used to how "things" worked - that north is up and south is down; what reality is and what constitutes fantasy; what common sense is and how to act reasonably and in a socially acceptable manner. We studied behavior and became masters of our own environments....
But what would happen if, with one foul swoop, that world of sense and sensibility is completely wiped out, and you find yourself stranded on a foreign planet where you don't understand the language and where down is up and the sun sets in the East...?
I am not an expert. I am not a doctor with a string of degrees.
I am a mother of two and my son has autism.
Please permit me to hit the pause button for a second and give you a quick peak down the rabbit hole into the strange, unknown, puzzling & dazzling world of my Simeon. Some of you will resonate exactly with what I am saying, and some might think I'm slightly bonkers with a taste for all things melodramatic. But from whichever camp you may hail, take the ride and immerse yourself for a moment in the land where the sun actually does set in the east and down is very much UP!
I always try to explain autism to people by saying that it's like two neighboring towns completely isolated from one another by radio silence. There are in fact telephone poles next to the road and little power boxes on those poles, but the wires are cut.
So, no one can call out and no one can phone in. So you're left with smoke signals, telegrams by horse and sometimes just pure guessing... getting it right sometimes and also at times, horribly wrong. I dote on Simeon by calling him my dark chocolate delight... and its true in more ways than one.
Here are some of the bitter dark chocolate moments:
• He has no sense of danger and has run in front of cars, escaped out of the house and has stood in a very busy road with no regard for his safety.
• He has climbed out of a second story window and nearly fallen out.
• He has climbed onto the roof of a friend's house.
• He has opened and climbed into the bottom drawer of a cupboard causing the whole cupboard to capsize and fall on top of him.
• He is completely unpredictable and even with constant supervision and neurotic double-checking, he still finds the smallest gap, loophole and chance to dash off and push the envelope to the hilt!
• He has erratic sleeping patterns and will wake up at 2am just randomly yelling & screaming but not because of any distress or fear - Just because he can!
• I spend EVERY day of my life wondering what he is thinking. Because he is non-verbal, there's no real way to truly know what he's experiencing or thinking, and no true way to express the full extent of his deep inner feelings. Obviously we sign and hug, but I still feel a void and a longing sadness every day. I went through a deep and dark depression - a grieving process, in fact - when Simeon was diag¬nosed... to bury the child I had expected in my mind, and to accept the vulnerable boy in front of me right now - needing my love and unconditional acceptance at his level. I had to completely readjust my expectations and divide all normal child milestones into an additional million steps and start celebrating micro-victories. I can't measure and compare him to any regular 5 year old; he's dancing to the beat of the unique and wackadoodle Dr.Seuss marching band playing in his head. I had to slow down and walk with him at his own pace.
• Sometimes I am scared of him because he has really hurt me in the past. Not with any malicious intent, but with total misplaced strength, and a misplaced cranium on a nose bridge, to name one.
• If there is any deviation from the daily routine, edriving route or sometimes for a complete nonsensi¬cal reason, he will have violent meltdowns and cry and scream so hysterically that it brings on a severe asthma attack. He will throw himself into walls in protest and bang his head.
What really makes me 'batshit-Brooklyn-mama-crazy' is when people say things like:
"Ag shame, what's wrong with him?" or " Don't worry, he doesn't look that bad or that autistic" or "Can you please control your child's behavior" or "He isn't really 'Special Needs' because he doesn't have an oxygen tank and a feeding tube going directly into his stomach! " Seriously??
But the worst is when idiotic people say absolutely nothing and I can see how, with their eyes, they reck¬lessly dispense their severe judgment & prejudice - thoughts written in capital letters in their eyes:
"My God, but you're a terrible mother!", "Wow, what a little monster you have!!"
This makes me profoundly sad. But then I just have to shake it off and somehow be the strong mom my son needs and deserves. Not because I feel strong, but because I don't have a choice.
Here are some of the sweeter dark chocolate moments:
• Simeon is one of the most loving and cuddly people I know! He climbs into your very person like a cat and walks figure 8's all across your body. He experiences your whole being with his whole being.
• He will be so sweet and attentive, when you expect it least, and completely take your breath away with his sensitivity and vulnerable approach.
• After years of coaxing and nagging and failing and then, trying again, he now has 6 spoken words in his repertoire. That is HUGE for him!
• He has an incredibly sharp sense of humour, and will turn the most goofy joke into an interactive game. He will even customise and share the little private joke that he knows YOU find funny.
• He has a hawk's eye for detail, and an insanely intelligent, creative mind.
• He had terrible balance and suffers from hypermobility, so he couldn't even run or balance on a stationary tricycle... Now we have to run to keep up with his amazing kick-bicycle prowess.
• It is a totally arresting moment, when he successfully makes eye contact with you and looks straight into your soul with those big Nutella eyes.
• He is starting to show some understanding of empathy and what it is to hurt someone's feelings or body with your actions.
• He is becoming more and more responsible and can do little things like wash his own hands, brush his teeth and hang up his coat.
• And when he signs "I LOVE YOU" at night when we say goodnight, he turns you into a sentimental ball of mush.
You see, that's the curious thing about dark chocolate... It's extremely brittle, and you have to keep it in your mouth for much, much longer than ordinary chocolate, but if you patiently let it linger beyond the initial dark & bitter twang of pure cacao, it will develop in taste, and suddenly - surrender to you, melting into a most beautiful & profound feeling of satisfaction.