But to give people a little glimpse into the ups and downs of parenting special needs life, here is one morning's worth:
3:10 am- You are woken up by your SN child waking up, finding you, and won't go back to sleep
4:30 am- You finally get your child back to sleep and desperately want to go back to sleep, but have emails to send to the school about unexplained bruises you found on your child.
5:00 am- You finish emails and go for a quick shower- it will be your only time; you haven't showered for 3 days, and once your kid wakes up, chaos is non-stop
5:10 am- Your typical child comes and tells you that the SN child just wet the bed. While you are in the shower.
5:15 am- Towel around you, hair still soapy, you hurry to deal with the bed-wetting. Turns out, it wasn't just wet. *sigh*
5:20 am- Plunk SN child in the bath, hurry and run back to rinse your hair.
5:25 am- Clean up messes, bathe child, start laundry, scrub floors, bed, walls, and dresser
6:00 am- Children are now bathed and room is cleaned up. Your day may now start!
6:15 am- Make breakfast and have a fun time talking about what we will do that day
6:35 am- Put breakfast dishes in the sink, start packing lunches for school while kids get dressed.
7:00 am- Lunches are packed! You go to check on the kids. The typical child has dressed themselves (doesn't match, but they are dressed!) SN child is crying with her head stuck out of the arm hole of the shirt and both legs jammed into one leg hole of the underwear.
7:15 am- You have now coached the SN child through each individual step of putting on clothes correctly, then praise and hi-five them for working hard. You remember back to when you were trying to stuff their hypotonic arms into clothes as a 3 year old, and know that it is SO much easier now.
7:20 am- Go to brush teeth! SN child decides that their toothbrush is scary and screams and gags through brushing their teeth. You have to pin them down to brush, and feel like a monster for seeing how terrified you made your child. Cue sweating from having to wrestle them to the ground
7:25 am- No bus yet. You sit and read a story while you wait, and your child, now calm though still teary, points out a word they can read. You glow with pride
7:30 am- The bus is finally here! Your SN child gets on the bus and is off to school
7:40 am- You have now been up for about 4 and a half hours, and yesterday didn't yield any sleep either. You look around. Do you spend time with your typical child, run errands, catch up on the mountain of dishes and laundry, or take a nap already?
7:45 am- You decide to take a 20 minute cat nap, so put on a movie for your typical child.
10:00 am- Oops, that 20 minute cat nap turned into a 2 hour nap as your body desperately tries to recover from the last 8 years of sleep deprivation
10:15 am- You apologize to your typical child about not being able to spend time with them, then rush to work on dishes.
10:20 am- Insurance returns your call from yesterday. And no, that $10,000 genetic test will NOT be covered, because you didn't see a genetic counselor (also not covered) first
10:30 am- You text your husband, telling him that there will be a huge bill coming, and that you plan to appeal, and will follow through with that after the next IEP meeting.
10:35 am- He responds, saying that we will probably never be able to save for retirement, or help with the other child's college or anything because of how expensive the SN child is
So here we are, about 7 hours after you and your child woke up. By now, you are physically exhausted, emotionally drained, financially anxious... And unable to complete the housework you have been planning to do for a week now.
Now, take that morning, and a similar afternoon/ evening, and multiply that by every day of your child's life. Now ad on the knowledge that every day for the rest of your life will probably be that way, since your child won't "leave the nest". THAT is the level of exhaustion we have.
Don't get me wrong- there are AWESOME moments! When your child hits a long-anticipated milestone, or adds a word to their vocabulary, or you get a great note home from the teacher, you feel like you could fly.
But a lot of the time, we are so tired we have long since forgotten what it is like to be rested. Or what it is like to have money in the bank. Or to NOT have a headache.
Just a morning in our shoes.
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