A Day in the Life with Craig

Craig was born almost 30 years ago on May 1, 1985. It was my first child. I was 21, almost 22. I had him via c-section and my husband went home to call relatives and the doctor tells me they want to run tests. I said do you do these on every child? She said no. She said she thought he had down syndrome. To me he was the cutest thing I had ever seen and I was already so in love with him. The two other ladies in my room had their babies with them and had friends coming bringing balloons and I was all alone. They told me he had collapsed lungs, a heart murmur, an enlarged heart, holes in his heart, low temperature, and jaundice. They made it sound like his heart would stop beating at any minute. I prayed all night long. I told my husband to call everyone back and tell them to pray. He was not very supportive to me and I later found out while I was in the hospital that he was having an affair with my best friend who worked with him. She had a kid with him a year later.

So I am there, alone, when the doctor gives me the news. My mom lived 4 1/2 hours away. We had gone to Cincinati because it was the only place he found a job. My mom was moving to Wooster on the day I went into labor. When I called her crying because my doctor was busy with another c-section and was insisting I wasn’t in labor (she just talked to me on the phone), I realized she was moving that day and I just needed to talk to her but she had no phone. Someone thought to have the apartment manager go tell her to call me. Her phone turned on the minute the guy came to her door with the message. She told me to get to the hospital. I think God was trying to tell me things ahead of time.

A co worker of my husbands had asked me to babysit his child with Down syndrome. I did not even see the child and said no. I didn’t think I could handle it. The day before I went into labor I read an article about Down syndrome, or else I would not have known what it was when the doctor told me. When I read the article I said to God , “Please don’t let my child be like that.” A few hours later, I was in labor.

So my baby was in the NICU and I could not have it in my room. I had a c-section so I had not even seen it really. I knew it was a boy. I was jealous of the two ladies in my room (we had three to a room) who had their babies and all was well in their lives. The doctors pretty much thought he would die. So I prayed all night. The cardiologist was coming in the next day. He had already done lots of tests and said his heart had holes and was enlarged and he had a murmur. They had done tons of tests on him. I prayed and did not sleep. And the next morning the cardiologist came in my room bewildered. No heart problems, no collapsed lungs, etc. !!!!! He was like “Sometimes these things heal themselves.” I said, “NO IT WAS A MIRACLE FROM GOD!!!!” He was FINE! And yesterday they had made it sound like he could die at any minute. God is SO GOOD!!!!!! He went home after a week. I refused to leave until he left! The doctor said to have his heart checked at one year. I said ok. I did and the doctor at the time said “Why are you here?” I said they told me to come back in a year. He said he is absolutely perfect! And he has been for 29 years.

He had a Smurf bedroom. I made small smurf pillows I sewed by hand, that I put on the walls. I did some paint by number smurf pictures too. I made his Smurf curtains from smurf material I found. I loved him so much. When I was in the hospital a social worker came in to ask if I was giving up my baby for adoption I was so mad at her! I screamed for her to get out of my room. I said he is my first baby and I love him!!!! I was determined he was going to do everything any other child does. I worked with him all day every day. When he was 3 I took him to three different preschools because I wanted him to have interactions with “normal” kids. I wanted him to learn things. He mimicked everything so I figured being in preschool would help. He went to one on Monday and Wednesday, and one on Tuesday and Thursday, and we also fitted in Headstart somehow. The person that is supposed to HELP you with early intervention said to me when he was 5, “It is pointless to teach him his alphabet. He will never read a newspaper.” I said “What about Chris Burke who quotes Shakespeare on LIFE GOES ON?” She said, “I don’t like that show. It gives parents false hope. Your kid is not going to be like that.” I got mad and said, “You can’t tell me what my kid will do!” It made me all the more determined that he WOULD BE like Chris Burke. So, I bought every fun educational program I could for the computer. Jumpstart  kindergarten and first grade. All the Disney interactive animated storybooks. Disney reading programs. When he was 4 1/2 he got a baby sister and when I called from the hospital to say I was bringing home baby Megan he hung up the phone on me! AT times he loved her but he also did things like running up and taking her bottle and running away with it just to hear her scream. And same went for toys. He threw a beanbag chair on top of her when I went to the bathroom and she was in the playpen and was very little. I heard her scream and after that I took her with me to the bathroom. When he was younger the only school was the school for the handicapped that had more severely disabled children. They would only give him speech therapy after he learned to walk. So he got like a hour once a week. I didn’t think that was enough. I worked with him nonstop at home. I started when he was a baby. When we were shopping I would say this is a banana, can u say it? This is an apple….as a result my daughter was talking in complete sentences at 2, because she was listening to me teach Craig, and she helped me teach him. We took photos of familiar things, put each one on a half sheet of colored paper, wrote the word under it, and then used clear contact paper to laminate it. We had over 100 flashcards I made that we did three times a day to get him to talk. We taught him signs when he was young, but in preschool the teachers and kids did not know signs. The signing made him quit talking for awhile. So I labelled everything in the house. (Friends thought I was a bit strange, lol.) The table had an index card taped to it that said “table.” The chair was labelled, everything we could label we labelled. Soon the words on the labels and on the flashcards he began to recognize. He would say a word for a cheerio or m&m. We gave lots of praise. We read “Cat in the Hat” every night, pointing to the words as we read them. I still have the entire book memorized from reading it so much. The animated storybooks on the computer would also highlight each word. They told me a downs kid could NOT learn phonics. I did NOT listen! By 5 he could count to ten, write his first name, sing the alphabet, he recognized the letters and he knew the sounds of the letters. He could read “GO DOG GO” by the end of kindergarten, at age 5.

I sent him to a regular school, and had to fight the system, calling the dept of education in the state capital and asking if the law said my kid had a right to go all day every day to a regular school. He said yes. The school was giving him half days three days a week and we finally got him full days after a fight.The school said what will we do with him all day? He will need a aide. I said well then you have to provide it and let him be in regular classroom. So after a fight he got a full time aide. Then they would write up the IEP and want me to just sign it. I said I want him to read and write and they thought it was an inappropriate goal, but I insisted. All the work I put into working with him almost 24 hours a day paid off because he was reading at 5 years old. He was also talking because of all the flashcards we did. I hate to see parents say there kid is non verbal because I believe unless they are deaf or have autism, they should be able to talk. But it takes years of repetition!!! So he was getting goals he had to accomplish every week. I was confused at the teacher’s note because it said he had these goals and i had not seen the paper. Well we had a long driveway and the bus dropped him off at the end of the driveway. So I see him get out and throw a paper down on the ground. When he comes in I tell him you go back down there and get me that paper. It was a paper saying he had to learn the days of the week and we were supposed to have it on Monday but it was like WED. So my daughter recorded the Happy Days theme song over and over and over on a tape . We sang it for him for 3 hours until we were losing our voices. After each time we said say the days of the week. If he said it wrong we sang it again and again. We made him sing it. Sunday Monday Happy days, Tuesday wednesday happy days…..he loved the show so it wasn’t too hard, but it took many hours of singing it over and over before he finally said the days of the week IN ORDER!!! He had to WRITE them on his paper so we worked on that too. He still remembers the days of the week because of that song. These kids love music. We sang his address and phone number to “Mary had a little lamb.” His address then was “8543 Maurer rd Maurer Rd Maurer Rd, 8543 Maurer rd thats my address.” It works!!!?

One day the teacher called me and said Do you know he brought a cat in his bookbag to school? She said do not laugh when you come in here. Of course I laughed! This poor cat had been stuffed in his book bag crying forlornly until I got there. It had rode on the bus! When she opened the book bag she about had a heart attack! When he was 6 and my daughter was 2, she was peeling bananas for him and he was stomping it in the carpet with his shoes. It did not want to come out and was dried on there. Another time they crayoned all over newly painted walls while I was putting up a wallpaper border for him (Mickey). She had drawn a circle and said Look mom I made a circle!! I said it’s a good circle but we only crayon on paper! So many trying times and yet I look back now and laugh! When he was 8 SSI finally approved him and gave him back pay and they said we had to get rid of it within a few months. So we got a decent car, paid bills, and did what the kids wanted: we took Grandma to Disney World. They loved it. My mom thought she would hate it but she loved it too. Now we have lost her to cancer so we have those memories. I have lost my mom, grandma, dad and stepdad to cancer so the kids saw some sorrow in their young lives. And when their dad had his perfect son born to my best friend, he left us when my son was 5 and Megan was 1. The kids did not understand at all. He now has nothing to do with them, won’t talk to them on facebook, never sends cards on birthdays or Christmas.

I tried getting married again a few years after their dad left. It lasted 17 years but it was a pretty bad marriage. I married an ex-amish guy so go figure. So Craig has lost two “dads” and grandparents and he doesn’t quite understand it all. I told him they were in heaven so when there was a beautiful day with big puffy clouds (right after my Stepdad died) he looked up to heaven and said “I see Grandpa!” I said “does he still have a beard?” He said “YES!” Another time on our way to Disney in a plane he also claimed to see Grandma in Heaven.

So he graduated a few years later than most, but he did, in 2007. He took food service in school and went to a career center. He would serve the kids food, prepare food, do dishes, clean up, mop floors, and empty trash. Now that he is out of school, I have bad health and my legs hurt a lot, so he helps me a lot. Every morning he makes me breakfast in bed. Usually french toast or pancakes. Today he made the pancakes with chocolate chips (his sister’s idea) and they were very good. He goes to church every Sunday, and loves to hear the shows at Dollywood and ride the coasters. He does his own laundry, reads, goes next door to Dollar General on his own, types in a pin number for the debit card, he walks the dogs and feeds them. He takes care of 4 dogs and a cat. Three dogs sleep in his room on his bed. He can make homemade pizza, pork chops, chicken, fried potatoes, mashed potatoes, hamburger helper, macaroni and cheese, banana braed, cookies, cake, spaghetti, french toast, and pancakes. He has to walk down three streets to get to our mailbox because we live in a mobile home park, and he goes to get the mail every day. I am hoping people will mail him cards for his 30th birthday May 1 since he never gets any mail. He is a true blessing. A gift from God.

Paula Byler

1us christmas



Meriah is the deaf, single mom of 3 kids (one gifted 2E, one with Down syndrome). A longtime career counselor, teacher and disability advocate, she loves helping to create community and empower parents, people with disabilities (and of course, parents with disabilities).


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