He cried all day and night. He was born in a hospital in India. When he was a 2 month old baby, if you called his name he wouldn’t look at you. He could not concentrate. He could not hold his neck straight. He was wobbling. He would cry all day and night; never slept. And he would cry until he stopped breathing.
Mother
So much going on in that little body
She screamed 24 hours a day for nine months. Looking back, we wondered how her neural system was… Was she just kind of short circuiting and just didn’t know how to handle whatever was going on? Was she seizing at the time? She had difficulty feeding. She had difficulty going to the bathroom. There was just so much going on in that little body.
Mother
There was no way to straighten out the problem
Madison cried all the time; she never stopped. There was never a way of soothing her. She barely slept. She would always fling herself, always forcing her upper torso back. Her legs were always as straight as a board. We always had a hard time holding her and soothing her. Like, most babies you can cuddle them into your body or into her chest. You could never find out what to do to make her happy. And then if she was quiet and happy for a moment, in a split second, she could just be screaming. And then you would have no idea why because just a second ago everything was fine. You didn’t know what caused the problem and there was no way to straighten it out. The other thing was eating. You could never feed her. You had to force feed her to get the food into her. She never understood or was accepting of food and that went on for years.
Mother
Gradually, you start seeing little things
As time went on, Kaleb’s twin brother, Kaleem, was doing all the little things that babies do at that age, and Kaleb could not hold his head up. He started to get weak, and he started to get very, very dark circles under his eyes, so I’m like, “What’s going on with you?” Then, he started to show some more signs. He would vomit. As fast as the food went down, it came up, and even when I didn’t feed him he was still vomiting. I took him to the doctors, and they kept saying, “Well you know what? He’s constipated,” and they gave me a powder to put in his formula, but he was still vomiting. It just wasn’t going right, and gradually, instead of improving, Kaleb was getting worse. He stopped turning over completely. He stopped wiggling and moving. Gradually, you start seeing little things. I saw that he would have one hand open while the other hand wasn’t. He couldn’t grasp things. He couldn’t put his hands to his mouth. He couldn’t feed himself. And I took him back to the doctor’s, and they just gave me a load of B.S. Eventually, it got to the point where the babysitter would call me at my job–“Come and take this child to the doctor.” That was happening like twice a week.
Mother
When he was about nine months, I actually was the one who noticed a physical difference between my son and the other two triplets. It was summertime, and it was really warm out, and he had a t shirt and a diaper on. The three of them were lined up in highchairs for lunch, and I noticed that his right hand and his right foot started to curl under and I became alarmed. The early intervention team that came in which was speech therapy, physical therapy, and occupational therapy really hadn’t noticed it, and then I took him to doctors and had some tests done, and they diagnosed him with cerebral palsy.
Mother
A hereditary form of Cerebral Palsy
It was time for Justin to start walking and he was beginning to pull himself up and he was furniture cruising. You know, going from one piece of furniture to another. But we noticed that he was walking on his tip toes and that he couldn’t walk with a flat foot. So we took him to our pediatrician who then had us go to a neurologist. She was the one that actually diagnosed him with a hereditary kind of cerebral palsy. We actually adopted Justin at birth, and his birth mother had cerebral palsy, but we didn’t know she had a hereditary kind until she gave birth to Justin and we began to see that he had the same condition.
Mother
I thought it was somehow my fault
Pete had overall delays in achieving milestones. He was late in almost everything. At first, he was late with holding his head up, then sitting up, and then very late in crawling (he crawled at 1 year) he walked at 2 years 4 months. He had weak sucking as well and this made it hard for him to nurse. I felt very overwhelmed by this, because I thought it was somehow my fault that he could not nurse properly.
Mother