Ya know, miracles happen every day. Just today I read a story on Yahoo about a 9 ounce baby that survived and is projected to be going home around New Years. The baby had been born at 24 weeks, due to high blood pressure (aka pre eclampsia), and she was doing great! Hallaluiah!
I have my own child that came just a little early as well. He didn’t weigh 9 ounces, but he did come in at a whopping 1 pound 5 ounces. He weighed the same as a 20 ounce Coke bottle. He fit in the palms of my hands….literally.
Now, looking at the above picture of a definitely well fed and growing boy, you wouldn’t suspect that this child was a micro preemie. Would you?
This big handsome boy spent 89 days in the NICU in Kansas City, MO, between 2 different hospitals. He delivered by urgent C Section due to pre eclampsia that had nearly claimed both of us. He had pneumothorax twice, pnuemonia once, staph in his blood, multiple transfusions, a fundo for reflux (surgery), surgery to correct bilatera inguinal hernias (at the same time as the fundo), ROP that corrected itself, and was on oxygen of some sort (cannula, cpap, and vent) 82 of 89 days. He came home at 5 pounds and 3 months old.
After he came home, he had several health problems. He had scar tissue from all the time on the vents, and the tissue grew and left him a tiny hole to breathe through roughly the size of a pencil lead. This was found at 6 months old. He had surgery to remove this and some other cysts that were growing in his airway as a reaction to the vent. He had many ER visits over respiratory issues, and was on a nebulizer 4x a day for years. He also had surgeries to remove teeth that had rotted from all the albuterol inhaled by mouth.
He had Occupational and Physical Therapies to help him simply learn how to roll over, crawl, then eventually cruise and walk. He showed signs of delay but we (his dad and I) figured it was from his prematurity. He did arch away from us, like our touch hurt him. He hated having anything by his mouth, wouldn’t look at me, was seemingly quite content in a quiet world.
As he got a little older, nearing a year, he started shredding newspapers and making them into perfectly shaped piles, in identical sizes and heights. He also liked spinning thing, lining up things in ruler perfect rows. We thought, “oh this is a little odd”, but didn’t really suspect anything.
When he turned a year and a half or so, Kevin’s dad and I separated permanently, and I was on my own with a chronically sick child. He was also starting to head bang against things, and played with blades of grass and inspected each individual blade as he played with them. He watched Elmo and Sesame Street, Blues Clues, and such over and over and over with total involvement. He didn’t speak, didn’t try to even with tons of encouragement. He had major major separation anxiety as well, as I had to leave him with babysitters in order to work up to 3 part time jobs to support us and be able to be flexible enough to handle his sicknesses.
Then one morning he woke up before I did, and did some headbanging on a plate glass 2nd story window in my apartment. He put his head through it. I immediately got him into his pediatrician, who pointed me toward autism. He showed every single sign. So we went through testing with a neuropsychologist and came back mild autism.
So, here we are now, at nearly 10 years old, many many hours of OT and PT later, many hard days, but also many good days down the road. This child, who at the very beginning was given a very small chance of survival due to all the pre eclampsia had done to him, is a whopping 105 pounds, and almost as tall as I am! He is in 4th grade, loves his kitty Shadow, has a favorite stuffed dalmation dog named Trouble, is obsessed with Nascar and WWE, and is totally loveable. He gives tons of hugs and kisses, likes to crawl up beside mom in the recliner or on the couch and sleep, loves helping mom in the kitchen, and playing with his stepbrother and stepsister. He accepted a stepdad early on, and tells him he loves him more often than he tells me. He talks, sings, handles noises very well, loves music, is friendly to everyone and uses excellent manners, and most of all–he knows the Lord Jesus Christ and loves Him!
I won’t get into all the long battles fought, as each child is so different. Our family contains 3 children on the autism spectrum, and each child has such a different set of problems it’s unreal. But know that with strong parental involvement and lots of prayer, a child can overcome obstacles that the “professionals” say are impossible.
I don’t know what his future will be like. I do know he is working each day toward independence…working on small things, like simple teeth brushing, toileting without using a scheduled system, dressing all by himself, etc. He may be a bit behind in areas, but he tries hard. He’s one of the hardest working kids I know!
Kevin is one of the many many faces of autism. His outlook on life is different, he sees the world through innocent eyes, and sometimes I wish other folks could see the world he does. I think our world would be better seeing things the way he does.