Today is a good day. The day started off a little bumpy with several moments of what I like to call “Coping Challenges.” Others call them “meltdowns” or “dysregulation” or any host of things that all mean pretty much the same thing — my child with autism is unable to cope with something for some reason and needs to throw himself on the floor and have a full-throttle kicking, screaming, crying, flailing expression of rage and/or frustration until he’s either worn himself out or I am able to distract him with something else. My husband often opts for the former while I am a strong proponent for the latter approach; call me the peacemaker of the family? But I digress. Nik had not had a good night’s sleep and had already had some rough patches.
I dropped Nik off at school this morning with a laughing warning to Ms. Joyce, Nik’s teacher, that he might have a challenging day ahead of him —and so, by association, would she. We really like Ms. Joyce; she’s warm and wonderfully insightful about Nik and his myriad challenges. She is patient and kind while firm and no-nonsense at the same time. She is one of a very small handful of people that we feel really “gets” Nik. So, I left content in the knowledge that Nik would be fine. (It wasn’t that long ago that I didn’t feel that way, but that’s for another post on another day.)
Today was a gorgeous day —sunny and warm and just right for getting out in the garden. In my case, it was more a case of getting out to the garden center to pick up supplies for my scraggly flower beds in front of my house. Just getting out by myself was a treat! I relish those quiet times as they occur so infrequently.
When I picked Nik up in the afternoon, Ms. Joyce told me that Nik had a couple of “meltdowns” today but recovered fairly quickly. Overall, he had a very good day. He ate a half a jar of food with his tube feeding in the morning; that’s progress as Nik goes through cycles of eating/not-eating! He climbed up the play structure and went down the sliding board ALL BY HIMSELF for the first time. That was HUGE! The paraprofessional said Nik looked like he was king of the mountain. That’s my little fearless man! Can’t walk or stand by himself but give him something to climb or slide and he’s Johnny-on-the-spot! I can just picture his little impish grin as he clambered up the structure —half crawling, half climbing. Did I mention that Nik is one determined young man? One of his many endearing —and frustrating— traits
So, school was a good deal today; Nik was happy to see me and even happier to go “Zoom-Zoom” in the car to see Daddy before he went to work. The day was good and getting even better; Nik patently adores his Daddy!
Now, Nik is not one to show overt affection. Due to a combination of his ASD and a visual impairment in his right eye, Nik has a really tough time making eye contact for more than a fleeting moment. However, every once in a while, Nik will reach out to lace his little fingers through mine as I sit next to him on the floor or he will lean into my side for just a moment. Kisses…fagheddaboudit! Since Nik was in the hospital so long and at such great risk for infections, we never got to kiss him on the mouth. We did, however, more than make up for it by kissing his sweet forehead. So, when Nik gives kisses —which is not often except at bedtime and even then it is sometimes done grudgingly —he tips his forehead toward my mouth. As if to say, “You may kiss me now, madam!”
As Daddy was leaving for work, he came over to kiss Nik goodbye. Nik was ignoring him as he played with one of his favorite toys with lots of doors to open and close. My husband shrugged in resignation. I motioned for him to wait a moment then said, “Nikolas, give Daddy a kiss. Kiss Daddy bye-bye.” Nik stopped playing for a moment then reached his hand up to touch my husband’s face as he tipped his little forehead to Daddy’s lips. My husband quickly kissed me goodbye and, I swear, left the house walking taller than I’ve seen him do in a long while! I sat and blinked back a haze of moisture from my eyes. You see, Nik has been classified as “deafblind” at school; we’ve never gotten concrete test results indicating whether he can hear in his left ear or not. He responds so inconsistently (as many kids on the spectrum do). So Nik obviously heard me; that’s GOOD. He also responded to a simple instruction; that’s even BETTER. He also had an intimate connection with his Daddy; no matter how fleeting, that’s GREAT!
Today was a very good day, indeed.
Hi Niksmom…
I just found my way to your blog today and started reading, and reading, and reading (do you get the sense that you are pulling me in with your story?). I love “coping challenges” and will have to bring that one into our lexicon.
Looking forward to reading more…welcome!