“What do you do all day?”

I get this question all the time, sometimes from my wife, but mostly from friends and family. I guess folks who don’t have a kid with special needs really don’t understand what we do. So, in hopes that I can direct people who ask me about my day here, I am going into detail about my day with Raymond.

We try to get up at 6am. If I get up at 6, I can do some exercise, eat my oatmeal and drink some tea prior to waking Raymond up at 7. My wife gets up around the same time and starts getting ready. Typically we will turn te tv on Noggin, and Raymond will wake up on his own. Perhaps not the best strategy for a kid who gets visually overstimulated, but it wakes him up while I shower, shave, etc. Also, it gives me time to measure his supplements and get him to take them. If we are doing vision therapy, we have to get that done too. Then I make his lunch while my wife helps Raymond get dressed. We get out the door around 8, and I drive Raymond to school.

School is a half hour away, so I get back home around 9. This is my chance to get stuff done. I blog, make my real estate calls, do research on properties or autism, pay some bills, schedule therapies, call the insurance company or any one of 30 other things that absolutely need my immediate attention. However, my workday goes on hiatus at noon, because I have to pick Raymond up from school at 12:30. So, after another half hour drive, I get to the school. There I talk with the teacher and her aide and ask about Raymond’s day, try to resove any issues, explain behavior they don’t understand and get a picture of how his education and social skills are progressing.

Then, depending on the day, we have either speech or OT. OT is at 2, so we grab a quick lunch out and head to OT. I will typically take Raymond’s supplement drink with me and he drinks it on the way. Speech is at 3, so we have time to go home and I make his supplement drink then. Then we head out to speech. OT days I drop Raymond off at his grandparents house at 3:30ish, and speech days its more like 4:30. Except Wednesdays, when Raymond has Therapeutic Riding, and we don’t get home until 5:30.

On the lucky days I get home between 3:30 and 4, I can actually get a little more work done. However, when I get home later than that, I have to start making dinner. I generally try to get Raymond’s vision therapy exercises done then too, and give him more supplements. Kelly gets home from work around 6:30 and we eat. Then we try to get some household stuff done, like laundry, take the trash out, etc. We also spend some time reading to Raymond, playing trains, games or whatever he wants to do. Some nights I work, either doing research for my real estate clients or doing data analysis as a subcontractor for my wife’s company. We watch a little TV generally starting around 9 and try to be in bed by 10.

That’s a perfect day. The rough days are when we wake up late and have to fit all that into a shorter time frame. Even better is when Raymond is uncooperative, so we are running late and have to figure out how to motivate him! Still, with our weekdays that full we must slow down a little on the weekends, right?

Wrong. Friday nights I either practice playing hand drums with a group called Bongo Buddhas or go to my Masonic Lodge meetings. Saturday mornings are devoted to either cranial sacral therapy with Raymond or counseling with our our therapist. Saturday afternoons are dedicated either to errands or showing homes to clients. We do get a break saturday night. Raymond’s grandparents are good enough to let him stay over once a week. This gives us a respite and lets us reconnect as a couple. Sundays are birthday parties, or day trips if we can find a fun place to go.

I’m not complaining. I love my life. I would be bored if I were less busy. However, I want people to understand that we do a lot for our son, but we also do a lot with him. I spend a great deal of time with Raymond, and it helps me stay connected to his needs. I think there is a perception among some folks that parents of kids with special needs are antisocial, or don’t want to be around, but the fact is that we are just super busy. Keep inviting us. Eventually we will show up, and I promise our company is worth the wait.

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