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Sharing Alex

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Sharing Alex

 

Our story begins long before our amazing Alex. My husband and I had a boy delivered at 24 weeks gestation who lived 2 days. Our second pregnancy was a girl born at 18 weeks who didn’t have a chance. You cannot imagine our devastation. The physicians were disillusioned as to the cause of both incomplete pregnancies but finally determined it was due to an incompetent cervix. If you have an incompetent cervix, your cervix might begin to open too soon causing you to give birth too early. That’s what happened to me, not once but twice. The third pregnancy put me on bed rest. Labor began at 24 weeks, the doctor slowed it down for another week, and my twins were born at 25 weeks. We had a boy! We had a girl! Twins! Alex weighed 1lb.12 oz. and Abby weighed 1lb.10oz. Both babies did well for about a week, and then Alex became terribly sick. He went from meningitis to staph infection to a bowel blockage to liver abscess. You get the picture. That was the most traumatic time in our lives. He remained in the NICU for 5 months and was sent to Cincinnati Children’s Hospital for a risky surgery. Within 2 weeks he was taking a bottle – can you imagine? Before long we were able to take him home. We had to limit visitation and we only took him out for doctor appointments. But – we were home and we were a family.

Alex began First Steps (Kentucky’s Early Intervention System) around his second birthday. He didn’t look up, did not attend to someone talking or touching him, had motor issues and he was very weak – he would not eat. But life was about to change for him. Patti, a developmental interventionist (DI) began working with him and the changes began immediately. This was the pivotal turn around for Alex and would lay the foundation for future success. I started taking the twins to a playgroup where they saw their therapists and made friends. When we moved, they started Visual Impaired Preschool (VIPS). Alex and Abby had not interacted or played well together until their second year at VIPS. Good times! I became more involved in my children’s education at VIPS and learned about the KY Deaf Blind Project (KYDBP) as a resource.

Alex was a happy boy, but he still was not eating so a G-tube seemed to be the answer. He started aggressive therapy with a feeding specialist both at Easter Seals and Cardinal Hill. We were on the road constantly with Abby and Alex. I learned about Kennedy Krieger Institute in Maryland and Alex and I spent a summer there. At last, Alex started eating. He was six years old and ready for Kindergarten.

The first six years was very stressful for us as a family. Having two children with significant disabilities is hard. Our parents did not live nearby, so we depended on our precious friends. Never underestimate the power of friendship in your family’s life. My husband and I learned in those early years to make our turbulent journey meaningful together. My husband has been my rock – a loving, wonderful husband and dad. In losing two babies, perhaps we were better prepared for twin preemies and the road ahead.

My twins are now 15 years old. I can’t believe it…Abby was diagnosed “on the autism spectrum” and Alex with Cerebral Palsy. But those are their “labels” and it does not define them. Alex loves the I Pad, his friends, Yoga, watching roller-coasters (not riding), Disney World and his dog Peyton.

He talks about science a lot now. During Extended Core Curriculum (ECC) week with KYDBP and the UK Visual Impairment Program, I began to see Alex as a leader. His ability to connect with others was amazing. I knew he was a driven individual, but to hear him say, “I can do it, and so can you” was music to my ears! The ECC youth activities included swimming, playing putt-putt golf, cooking, and participated in many other adventures that week. Alex became very independent during that week.  Since we returned home,  he’s been texting his friends like a typical teen. He’s always happy with a positive outlook. Alex says he wants to grow up, get married and have his own house.

I have dreams for Alex too. He will have a job that he likes and exert his independence living with others in a group setting. I hope people never underestimate him, never judge him by a label. My husband and I occasionally go out with friends and they share their parenting struggles – “my son did not get into the AP class; my daughter came home with a B of all things!” The one that really hits hard is “I’m so mad at the soccer coach – he didn’t let my kid play!” It’s hard for me to relate to that when my days are consumed with therapies, IEP meetings, and thinking about what I have to do tomorrow. Some parents have a problem with acceptance of their child’s special needs too. My husband and I have learned to accept and embrace those needs. When I become frustrated or sad, I remember a statement his doctor made after a visit – “I so enjoy seeing Alex walking and talking, just a happy kid that needs to be shared with the world.”

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