Tuesday, October 27, 2009

Special Needs: A Day in the Life

In my last post, I introduced you to my oldest son Jared, a special needs teenager. Not many people understand the needs and challenges, of the child and of the caretakers. So I decided to chronicle the past 24 hours of our life, of what I would call a "typical day."

12 Midnight Gave sleep medication

1:00 am Crying, Change a wet diaper

2:30 am Crying, Change a wet diaper

3:00 am Gave more sleep medication

5:00 am Crying, Change a wet diaper and turn on "Tom and Jerry" for 30 minutes so Jared can go back to sleep, gave Tylenol because he has an ear infection. I have to help him open his eyes to see the TV...he is restless and fussy for 45 minutes before falling back asleep.

6:00 am Hook up Jared's feeding pump (He is tube fed through a port into his stomach.)

8:00 am Change a wet diaper.

9:00 am Nurse Eva arrives and begins daily routine. Gives medications, does breathing treatment for Jared's asthma, does CPT with fluttervest (which vibrates his chest to loosen secretions in his lungs)

10:00 Bath

11:00 Peggy (his homebound teacher) arrives and reads to Jared, usually plays some games, stretches his muscles. She puts Jared in his wheelchair and sings to him, which he really likes. Plugs him into portable feeding pump and feeds him at 100ccs per hour.

12 noon Running fever...Tylenol

1:00 pm Breathing Treatment and Fluttervest...Sits in Eva's lap and she sings to him.

2:00 pm Lays down for a little while and listens to classical and bluegrass music.

2:30 pm Fussy so he watches Tom and Jerry...He really likes Tom and Jerry. Sarah the visual therapist from school arrives and works with Jared. Jared LOVES Sarah.

3:00 pm Back in wheelchair, watches Glenn Beck on TV.

4:00 pm Eva leaves and Lori arrives.

5:00 pm Breathing Treatment and Fluttervest. Watches HGTV for awhile until he wants Tom and Jerry again.

9:00 pm Medicines + Tylenol because he is running fever and is uncomfortable. Breathing Treatment and fluttervest. First dose of sleeping medication

10:00 pm To bed. CPT Lori leaves

11:00 pm Change wet diaper. Jared gets fussy so he gets his second dose of sleeping medication. Goes to sleep with Tom and Jerry playing on his TV.

So goes the typical day. Although Jared's care is somewhat intensive, his care "team" helps him through the day. God bless his nurses who help him so much with the daily routine. We all have a role in ministering to Jared's needs and helping him to have a full life. We could not do it alone, we have to have help with him. We are OK with asking for help because we know we can not do it alone.


  1. WOW! Is all I can say, you are certainly dedicated that's for sure. It must be tough to juggle the rest of you and your families lives around that sort of lifestyle. Sounds like you have a great team helping you out aswell!

  2. I just happened upon your site as I searched for other "Spirit-filled" believers.
    May God continue to grant you the loving strength you need to minister to your son. And may He breathe a fresh wind of renewal into your spirit, causing you to experience joy in your journey.

  3. Yes we are very dedicated to helping Jared but we try to balance our lives with Jareds needs. It would be impossible to care for Jared by ourselves, we need and have to have nurses, friends and family help Jared.

    Deb, I am glad you dropped in. Thank you for your prayer.

  4. Our awesome Provider obviously put together a winning team! Go team Jared! Awww, I love Sarah too ... also bluegrass and Tom and Jerry, I might add! Does Jared like praise music too? How does he respond to the Word spoken to him? How blessed Jared is to be given to your family and vice versa. The LORD is SOOOOOO good1!!!! Bless His heart!