Yesterday, I had to play the antagonist again in my Little Prince's world. I had to disturb Garret's place of calm and peace and routine. After his sped class in the afternoon, we went to the big school together with Morgan. Morgan, with his naughty little butt decided to take a nap by 4:30 p.m. When I say "decided" I mean, whining and crying and wanting to be carried, and just one step before full-volume crying occurs. So I had to say to Garret who was already so at peace in the social hall, sitting on the table, taking in all the hustle and bustle of the students playing, etc., "Kuya, we have to go home na. Morgan is sleepy. We need to go home na in a while ha..." As expected an adamant "ah!" met my requesting of him. I won't go into the details of what happened next but let's just say a lot of heads turned and one of his cousins asked very concerned, "Why tita? what happened?"
Ever had one of those moments when you were single and you saw a parent and a child in a mall or grocery store, and the child acted out and you judged immediately why the parent could not discipline her child? Well, this time, I wasn't the observer. I was the unable-to-handle-her-child parent. But this time, I knew Garret was not acting out. It was just a case of "It had to be done" kind of thing. I had to force him out of his peace bubble because Morgan wanted to sleep already. And lately, his little brother's sleeping pattern has gone berserk that I don't know what else to do to make him sleep well at night. Garret yelled and slapped my arm. Morgan scared of his kuya's yell, cried all the more. All that went through my head was " Okay, don't panic. Just breathe.Don't mind the stares of the people around you. Focus, keep calm. Hold it together." Garret slapped me one more time after which I held his shoulders and emphatically said, "GARRET!". He fell silent and whined. I almost forgot, autism does that to my boys.
Of course Garret couldn't understand why we had to go home so early when in fact he was so used to going home by the time all the students in the big school went home. He couldn't understand why he had to go home when the final bell did not ring yet. He couldn't understand why Morgan had to cry, why Morgan had to sleep in the middle of his "big school time". Morgan, on the other hand could no less understand why his body just wouldn't sleep during his usual 1 pm nap time. He couldn't understand why even at 12 midnight, he still couldn't sleep. And he couldn't understand why no amount of bouncing on the vestibular ball and rocking on the rocking chair with mama could not make him go to sleep.
All the way home, Garret sobbed. I could just see and feel his disappointment and it tore my heart apart. When we arrived home I held him in my arms and we stayed in the rocking chair as I tried to soothe him, telling him, "It's okay Garret...I'm sorry. I'm sorry." It took about half an hour before he finally calmed down and fell asleep. When I transferred him to his bed, he woke up already calm and seemingly comforted. After another half hour I prepared his dinner and I kept telling him, "Sorry Garret ha..." He just sat down on his chair and softly echoed my words in a sing-song voice, "sorry, sorry, sorry, sorry, sorry." Yes, 5 times. I didn't know what to make of it. I just felt relieved somewhat. Maybe it was his way of saying, "it's alright, mama."? I want to believe that it is. He may not understand all the reasons why we had to go home earlier than his usual routine, but I want to believe he understands me saying sorry I had to do that and he had to be frustrated and disappointed.
And what of Morgan? Of course, sound asleep till 7 p.m at which time I had to force him to wake up, me thinking, so he wouldn't stay up too late later that night. And of course, when we put the lights out at around 11 p.m. and I drifted of to the REM stage of sleep, he began whining again and the whining turned to crying. I flipped the lights on and put on Barney. He then got his wooden shapes puzzle and got all the shapes and put them back again, over and over, which amused me somewhat because I thought, "well, at least something productive can come out of this episode. He'll be able to master his shape sorting skills." On the other hand it was as if he was just doing this to tire his eyes out. Again, I won't go into the other details of what transpired next. Suffice it to say that he finally climbed into bed on his own accord at 2:30 a.m. and me finally succumbing to sleep at 3 a.m. I wanted to berate something, someone, anyone, anybody so badly, autism, specifically, the universe next with my adamant opposition to this whole sleep deprivation that autism does to my little boy. But I held back, thought twice. Nothing good really could be gotten out of it. Just breathe. Don't panic, I told myself. Then I remembered something a friend wrote a year ago in her blog. I remembered her strength and resilience and her resolve to face the sleep monster of autism head on one sleepless night. And I thought to myself, " If she can do it, then I can too." I drifted off to sleep, albeit restless, but sleep nonetheless.
So this morning, as you can imagine, light-headed and disoriented, I woke up at 8 a.m. already planning to spend the day in my pj's. At 9:30, king Morgan woke up went out of the room and he approached me wanting to be cuddled. I told him, "Kiss mama first." I puckered my lips and he followed suit giving me the sweetest kiss ever and only after looking at me in the eyes and smiling his toothy grin. Of course the lightheaded sensation wore off almost immediately. And the disorientation was replaced by something clear and apparent as the morning sun---true love, my friend, Kary told me.
This is what will get me through times like this. This will make me defeat this sleep monster and frustration monster of autism. My love for my boys. I will carry everything with fortitude. I will be strong for my boys. I will not complain. I will think positive thoughts. I will not care about what other people will think of my parenting skills. I will parent my boys as I see fit. I will give them all the love and support they need. I will keep calm. I will not panic. I will breathe deeply and I will carry on. And if my little king needs me to stay awake with him till 3 a.m. , then I will and tell autism to its face, "Show me what you got 'coz I'm ready for you."
These are just a few of the bitter sweet moments in our day-to-day life, living with autism. Thriving with it, actually. I say thriving because every dark moment has been an opportunity for discovery and learning, about myself as a mother, as a partner, as a woman,and simply as a human being. Every monster we face, we have overturned it to become a source of strength and understanding and knowledge and empathy for other parents who are going through similar difficulties. Every experience that drive us to the brink of our patience and ability to keep it together make me solidify the belief to be more accepting and nonjudgmental of other parents, other people for that matter because we each are facing our own battles.
Frustration, sleep deprivation, bitter moments they are, but beautiful, what with the lessons they bring and the strength and character they draw from the very core of my being.
For all autism parents out there, I hope you too shall allow yourselves to be strengthened and not defeated by whatever monsters will come out to face you. I hope you shall choose to be positive. I pray you will have the grace to keep it together, not panic and be calm. I pray that you will in turn have more empathy not just for other people but for yourselves as well. You are doing your best. And your best is enough for your children, for your family.You are strong and even if you feel as if you have lost your balance and center, you are still okay. And you will carry on.
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