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.

Special Needs, Special Gifts

My oldest son is a miracle. When he was born in 1992, doctors diagnosed him with a chromosome disorder and gave him less than a week to live because of the severity of his disablities. Now, he is 17 years old. He is missing 75% of his brain which causes him to be profoundly mentally retarded. He is spastic quadraplegic and has a seizure disorder. His immune system is compromised, he has severe asthma, and has nearly died, more times than I want to recount, from pneumonia. He doesn't sleep without being heavily medicated, and wakes up several times a night crying. He is medically fragile.

More importantly, he is a blessing to anyone who is willing to get to know him. Special needs children are not useless or a waste of resources. Their lives are precious and add significantly to the joy and pleasure of life. They are not a mistake or a freak of nature. They, like the rest of us have a place at the the table of the Lord. Although Jared has never spoken a word, he shares a deep love with his family, nurses and friends. His eyes twinkle and his smile melts away tension.

My son is a spiritual being. When we have praise and worship times at our house on Sunday nights, Jared becomes animated and coos loudly. He watches everyone as they worship. He participates to the full amount that he can and I am sure God touches him during our worship time together. Of all the people in the room, he is the least affected by sin and I think, he is the closest to God. Sometimes his delight during worship cannot be contained and it is fun to watch him enjoy God's presence.

My life is blessed daily by him. The pain of having him has caused my wife and me to be more sensitive to other's pain and has deepened our search for God. We constantly have to ask God for the strength to make it through the day, especially when we have stayed awake all night ministering to him. My other two sons are sensitive to special needs children at their schools, befriending and helping them. My sons have a deeper sense of value than their peers and they aren't afraid of standing up for those who have no voice.

Jared has spiritual gifts; the gift of faith, love and comfort. People are drawn to him, drawn to touch him and talk to him. He gives people his full attention and most walk away knowing they are loved and valuable....all without him saying a word to them. The Spirit surrounds him. One of his nurses came to Christ after being around Jared and my family, experiencing our unconditional love for her.

My wife and I decided from the beginning he was going to live with us, despite the physical and emotional hardship it has been on our family. Why? He our son, pure and simple. God made this boy and we decided to raise him to see what his potential could be. Our lives have been forever changed and blessed by him, each difficulty bringing strength, each pain turning to joy, each trial bringing perserverence.

The Bible says the kingdom belongs to "the least of these." I have been given the rare privilege of being the father to a special needs child. I don't know what I did to deserve such a blessing...I guess it is just grace. But if you are given the opportunity to be around one of these special children, rejoice and enjoy being near someone who is constantly near to the heart of God. Give them an opportunity to use their gifts and serve in whatever small way they can. Peace.