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One constant in my life is PAPERWORK. The SRS, the Vineland, the CFQL, the stuff for the neurologist, the stuff for the genetics guy, the stuff for the psych consult, the stuff for the county board of developmental disabilities, the stuff for school, the stuff for daycamp #1, the stuff for daycamp #2 (they’re in two camps this summer— one just ended and one just began). I’m always working on some stack of paperwork or another. Whenever I think I’m done for a few weeks, something else pops up. The stack I’m working on now is specifically for Fred and I’m not yet ready to say what it’s for. But I did want to share how I answered one of the questions: Describe a typical day in the life of this child, morning through night. I learned about myself and my child while coming up with the answer to this question. My husband helped me. THIS is how we spend our Saturday night at 11:00 pm.
As you’re reading this, remember that he’s about to be five years old.
Fred sleeps with a child lock on his door so that before he wakes up he cannot access his sister. He sleeps in a Goodnites brand overnight diaper with stretch pants and a onesie on top to prevent diaper digging. He wakes up in a good mood, chewing on his favorite Curious George stuffed animal.
I change and dress him and his twin sister and give them breakfast. On days he has daycamp or school he rides the bus (in a harness) to school or I drive him and his sister to daycamp (in carseats). On non school/ camp days, he likes to draw on his magnadoodle, play with blocks, spell with magnet letters, do math workbooks, read books, jump on his trampoline, and be tickled. He is not as prone to enjoy playdates with children his age or typical games for four year olds as he has trouble taking turns. He doesn’t enjoy taking walks if the destination is unknown and therefore requires that an adult push a stroller so that when he melts down, he can sit in the stroller. He requires constant redirection so as not to stim on particular toys or activities. He needs frequent reminders before activity transitions will take place.
We tend to avoid group activities: picnics, barbeques, parties. His behavior in public is completely unpredictable and though at times he is successful, he most often needs lots of support as he tantrums, screams and bites. He does well in a SMALL group with mostly adults. In a larger community event or a room with more than two or three children, he is extremely overwhelmed. We try libraries and playgrounds from time to time but those visits need to be short and well supervised. As his twin sister also has special needs I can no longer take them both to the library or playground by myself due to his unpredictable behavior. If she refuses to leave the library, he bites me and then runs off to bite another child while I’m picking her up.
Going to the dentist is a horror show. Thus far, we’ve been using a dentist who does not put children to sleep. From now on, we’ll be going elsewhere. I’m physically incapable of holding him down without getting extremely bruised in the process. Going to the doctor has been getting steadily better and his behavior is unpredictable—at times he’ll tantrum as we’re walking in and at other times he’ll play happily until he sees that he’s about to be examined.
As he is not yet toilet trained we are sitting him on the potty every hour on the hour. He does not yet use the potty but he is now comfortable sitting there as long as we don’t ask him to perform.
After plenty of occupational therapy he is now extremely successful with bathtime and enjoys it. Nail cutting, however, is still a massive challenge and a two adult effort.
At this time he has no problems with eating what is served to him although if he’d rather play than eat, he tantrums and requires a four minute time out in his room before he will buckle down to eat.
He is a good sleeper and sleeps through the night but usually takes a while to settle and runs around his room. This is typically when he chooses to defecate so I go in and ask him if he needs a change and I change him. THEN he goes to sleep.
Mothering this child is my greatest joy and my greatest challenge in life. It’s very difficult to hire a babysitter or leave him in a room unattended for a few minutes. However, I need to make an income so I work at home.