It's really tough during the "slow" times. Right now, Alex's progress is in a lull. He had that great breakthrough where he started answering some questions independently, but the progress fizzled out. I know that more breakthroughs will come, but these long stagnant periods can feel as hard as regressions.
I don't embrace a negative outlook on Alex's situation, but lately I've been going through a period of some admitted pessimism. When I see a 4-year-old, or, frankly, a 3-year-old and am shocked by this child's advanced language, motor, and social skills, I am quickly reminded that my shock is due to Alex's deficits. I think that as he gets older, his differences become more obvious and pronounced. His sister is 15 months old and she just blows me away with her language and development. It makes me happy for her, but sad for things that never clicked with Alex during the "right" time period.
It's also hard to know if I'm doing the right things for Alex. He is in school 5 days a week and gets therapies outside of school every day. He has ABA 4 days a week after school for an hour (two on Fridays,) Occupational therapy once a week, a music lesson on Saturdays as well as a social skills group for two hours, and Sunday School at church. He never really has a day off unless he's sick. His developmental pediatrician recently gave us a laundry list of home-activities that we should be working on. My question is "when?" When do we have time to work on all of these home-activities, and when does Alex get a chance to just be a kid? I mean, many kids his age haven't even been exposed to school yet at all; yet here we are placing a million demands on him. When we're at home, I naturally incorporate ways of encouraging him to use his language, but I really just want to enjoy my son and let him enjoy some relaxing moments. I love to read his favorite books to him over and over, and sing with him, and just snuggle sometimes. I've stopped feeling guilty about letting him watch his favorite TV shows once or twice a day because this kid needs a break from all of the demands placed on him.
Anyway, I know I'll get through this momentary lapse of high hopes. Alex is a special little guy and he'll continue to amaze me for years to come. It's me, not him.
