a fine line

adam and i were in the kitchen tonight, talking about our plans for an upcoming trip to north carolina. i had my hands soaking in dish water and adam had his pen to paper, making lists and plans. adele was in the living room watching tangled for the twelfth time this week, and luca was with her, just resting from his awesomely busy day. it was nice and calm.

 

and suddenly, i heard luca's excited squeal cut through the kitchen.

 

"come here, mom! daddy! look. I DID IT!"

 

adam and i looked at each other and slowly walked into the living room. luca, of course raced ahead of us, clapping his hands a mile a minute and jumping up and down with a huge grin on his face.

 

"ta-dah!"

 

i looked down to see a line of wooden blocks, cars, trucks and trains, intricately arranged by sizes and colors. some stacked on top of others; others hooked together; and there were even small pieces of string tying some of the vehicles to one another.

 

adam and i both, very proudly, said, "wow! that's awesome, buddy."

"you did such a great job, luca!"

 

he then replied with a "great job, luca! we so prouda you!"

 

the excitement of the moment must have surged through luca and adele because they both jumped up and chased eachother upstairs.

as soon as they left the room, i looked at adam with tears in my eyes, and without even realizing what i was saying, asked, "does this make you sad?"

 

"no. not at all. i am so proud of him."

 

my motivation behind that question was that i knew this wasn't a normal thing for a five year old boy to do- to spend time lining up, rearranging, counting and color-coding his blocks and trains. it was autism. it's autism that motivated luca to do that, to create his little work of art that he was so very proud of. in fact, as his PLAY partner, i am taught how to intersect these "autistic moments" and turn them into purposeful play; but in reality, i was too busy in the kitchen, cleaning up from dinner, to do that. and upon first seeing the little maze of toys on the floor, i felt more anger than pride. i was mad at myself for not catching that moment; i was mad at autism for motivating my son to want to line up his toys, rather than play superhero with his unused captain america garb in his toy box.

 

it was my husband's unquestionable pride that humbled me, and frankly, made me feel badly for allowing that anger to take hold of my heart in that moment's time. who was i to take away any ounce of pride and excitement from that moment? luca worked hard, and he was so proud of himself that he came and shared his excitement with his dad and me.

two years ago, he couldn't even tell me if he wanted juice or milk in his sippy cup.

i've been advocating for my son and for autism awareness, for hope and optimism- i've been asking others to see the good in autism- yet sometimes, i forget to see it myself. sometimes, i wonder, "who would our luca be if it weren't for autism?" and honestly, i don't want to know. i also wonder if it will always be this way- will i always have a love/hate relationship with this disorder that's stolen parts of our lives away? because, really, it's given us so much to celebrate and be thankful for, too.

five years old

i sat down last night to write this post. i wrote and deleted, wrote and deleted; cried a few tears, and then went to bed.

 

our boy is five years old today.

 

i am in that bittersweet fog where i am so very thankful to be luca's mama, and to have had the last five years to watch him grow- yet i also remember holding him in my arms for the first time and the smell of his milk breathe when i spent that first night as a new mama smothering him in kisses.

 

luca, buddy, you're awesome- and you shine so bright, and i want to wish you a very happy birthday.

 

 

normal

last night was one of the scariest experiences of my life, specifically my life as a mama.

luca went to bed at his usual 8:00. he peed. brushed his little teeth. read a book with adam. said, "but the sun not go down yet." and after reassuring him that he needed his rest to grow big and strong, he said his prayers and whispered, "goodnight. i lub you so much."

 

it was a normal night.

 

until 12:27.

i heard a terrible noise- one of my children screaming.

to be very honest, i couldn't tell who it was. luca or adele? as my foot hit the top stair, i realized it was luca. i ran to his room and found him in hysterics. he was in an absolute panic. i heard a bark. and then a gasp. or what sounded like an attempt for a gasp. luca couldn't breathe. i grabbed him and ran downstairs to adam- who had woken up and met me at the bottom of the stairs.

"luca is trying to breathe and he can't. we need to do something. we need to take him to children's hospital. now."

as we were frantically making plans with what to do with adele and putting our clothes on, luca was pacing back and forth, crying and screaming, yelling these broken words that i could not understand for the life of me. and then he started coughing, gagging and pounding his chest.

that's when i called 911.

thankfully, they came within minutes and began a breathing treatment in the back of the ambulance.

 

the cab of the ambulance was about 90 degrees and when the paramedic closed the door, i realized there were no windows and my heart flew into a panic.

i was on the verge of a panic attack, as luca was yelling my name and crying, clutching to my hand with a very definite fear in his big brown eyes. it's in that moment that i internally screamed at the top of my lungs, "help me, Father!" just like that, a peace sprouted within me and my heart began to slow.

 

as the wheels of the ambulance began to turn, luca was still gasping and barking. he didn't understand what the paramedic was telling him, asking him to do. i told the paramedic, very quickly and as unawkardly as i could, "luca is autistic." that was really the first time i've had to say that, to use that as an explanation for exactly what was happening with my son, and why he wasn't communicating. the paramedic was wonderful, very patient, and from what i imagine, a father himself.

 

the only way luca would wear the mask for the breathing treatment was if i held it, and if i did it in increments of 5 seconds. luca loves to count, and count we did. i would put the mask on his face, count to five and take it off. put the mask on his face, count to five and take it off. by the time luca had begun to calm down, we reached the hospital and had to transfer him to a room. this stirred up his fear, and by the time we reached the hospital room, luca was in a complete meltdown- very understandably so.

 

that's when the doctor walked in. his eyes were wide as he looked at my child and he looked at me, cocked his head and asked, "what is going on here?" i explained- that my four year old son went to bed, woke up three hours later and couldn't breathe. help us. please- he walked over to luca. "you need to calm down. we can't help you if you don't calm down."

i didn't like his tone. or the way he was talking to luca. or the way he had cocked his head at me.

"i'm not sure if you're aware, but luca is autistic."

and then the doctor said, "well, that explains why he's acting like this, why he's over-reacting. he's not acting like a normal child."
(i am taking no liberties here- those were his exact words.)

 

looking back on it, my heart is growing angry, a little dark even, as i type those words. how did he expect a four year old who couldn't breathe to act? i thought luca had been a trooper up to this point. no hitting, no anger- just fear. that man had no right to say what he did. he quickly told me that they would administer a breathing treatment and give him some medicine. i wanted to grab luca and run- and punch the doctor on our way out- but i couldn't. this man, this doctor, was the only one in the ER. i needed his help, his authority. there was nothing to do, but bite my tongue and do the best i could to comfort my child.

 

after two and a half hours, luca's color and smile had returned, and he could breathe. we took him home, said our prayers and tucked him back into bed.
he woke up, happy, and told me "i feel so much better, mom. i not sick anymore."

 

the doctor's words cut; i'm still feeling the soreness today. i simply don't understand how a grown man, a doctor, can be so ignorant. and my heart aches for that ignorance. it wasn't about him being politically incorrect and using the word normal instead of typical- in the end, these words mean the same.
it was about the way he looked at luca, the way he spoke to us, that just made me feel so very little.
in the end, i'm thankful the words didn't cut luca.
 maybe they never will.
my hope is to build my son up so tall, and so bright, that even if (when) ignorant people and their words come his way, he will know his worth and his remarkable ability to shine.

 

 

this is owl city, made up of the one and only adam young. he isn't normal. he has autism. and he's pretty awesome.

a pretty summer

i shared this short story on instagram today:

 

luca had PLAY project therapy this afternoon. we do this once a month, and as much as it helps [with his social and play skills], it is intense and exhausting- especially for luca. after our three hour session [of intense, purposeful play], luca asked me if he could go outside and sit on the front porch. he sat there so calm and quiet. it's in these moments when i desperately wonder what is running through his mind. i walked out and sat beside him.

 

he laid his head on my lap and said, "i think it's a pretty summer today."

 

tears filled my eyes as i told adam this story over dinner tonight. and he felt it- he felt what i was feeling in my heart, a warm sadness that just squeezes your heart in the very best way. adam said, "you know, that's luca. it sums him up perfectly because his words don't make sense, but really, they make perfect sense."

 

i had been standing in the doorway, watching luca sit on the front porch, taking in that quiet moment- a moment that is far and few between these days, and i thought to myself, "i wonder what he's thinking as he's sitting there by himself, completely unaware of the fact that i'm watching him, just loving him and thanking God for him."

 

and luca was thinking this is a beautiful day.

he just said it with different words.

 

and like a ton of bricks, like a light bulb flickering on in a dark and dusty room, i realized that is autism. it is the realization and expression of concrete and beautiful ideas that each and every single one of us are capable of thinking and feeling- it just comes out, it is expressed differently. and who are we, who is society to tell us that autistic expressions are less than typical ones?

 

i think my son's words were perfect.

words

sometimes, as adults, we lose sight of how our words- or lack of- affect others.

i was reading an article the other day about a woman and her teenaged, non-verbal autistic son. she took her son to the grocery store and when he saw donuts, he wanted them. she told him no and an all-out autism tantrum (yes, they do exist) ensued. this tantrum resulted in the son knocking the mother to the ground; he fell down himself, in tears, over hurting his mother and not getting his donuts. the woman then wrote that in the midst of the chaos, a man came to her and asked if there was anything he could do; when she told him "thank you, but no,"

the man responded with "you are a wonderful mother."

she said those words instantly strengthened her and warmed her heart, giving her the ability to remove herself and her son from the chaotic scene at the grocery store.

the mother's account of a terrible incident was ultimately a wonderfully heart-warming story about a stranger who offered help and a kind word, and touched a woman's heart. she said, in closing, that she would be forever grateful for the kindness of that man.

 

i should have stopped reading at the close of the article. i should have, but i didn't. instead i scrolled down to the comments section, and i read.

the first few comments were fine, encouraging even. one of these comments was by a woman who said she was the mother of three boys with autism, and that she had been in the same situation several times, and that she was eternally grateful for the help of kind strangers.

and then he commented. and he said that this abovementioned woman was a terrible mother, that she should have had her tubes tied after her first child was born because the world shouldn't have to take of all three of her [insert the r word here] children. he told her she should be ashamed of herself for burdening the world with autistic children.

 

tears immediately filled my eyes and i promise i could hear my heart crack inside my chest.

 

words.

 

they hurt. even if they are undeniably ridiculous and untrue, they hurt.

who was this man? how could be possibly say, or type, these words? what kind of life, what kind of heart does he have to express such heavy and bruising words?

 

and as a mama, i think, "how many more of him are out there, standing armed with their words, ready to shoot at any given moment, at my son? at my family? "

 

this is a big worry, a big hurt, of mine.

i know the world is not burdened by the birth of any child, especially one with autism. in fact, i'm thankful for the color that autism has brought to my life. i couldn't imagine luca any other way than that which he is, and i'm sure every mother thinks that about her child. or at least i hope so.

 

please, be kind to one another. understand that the words you speak, those you type or text or whisper have very, very big repercussions. they have the ability to harm or heal. to tear down or encourage. they leave their mark.