Twenty-seven years ago, at this time, I was in the final stages of labor. A baby boy that we had dubbed, Bart, was soon to emerge “Into the Light” and be officially named, Alexander Edwin Hale. With Richard on my left, my wonderfully supportive mother-in-law, Loretta in the birthing room, and Stanley Pollack, MD taking the lead we were prepared for this wondrous occasion. It had taken a while to get from A to B and finally to Z, despite the fact that Alex has an older brother by fifteen years his senior; time and different biological factors including dad’s, took a toll on conceiving and our emotional journey.
Just minutes before Alex’s emergence into the world, panic struck Dr. Pollack’s face as he noted the heart monitor for our precious cargo flatline. I was unaware of anything as my epidural kept me pain-free and when I was told to start pushing, I just did as I was told, although I felt nothing while I sense the emergency in his tone while watching my husband’s face knowing there was no reason for alarm. Rich was trying to get Stanley Pollack’s attention as he noted the monitoring belt on my swollen pregnant belly had come undone, thus the reason for the flat line. However, within minutes at 9:31 am on August 17, 1990, Bart became, Alex Edwin Hale.
Unlike fifteen years before when my son Steve was whisked away and placed in a plastic bag for warmth, Alex was placed on my chest. I cradled him in my arms, and I introduced myself to him before he was temporarily removed to be cleaned-up, checked out and returned to his father and me. In fact, before I held him, grandma Loretta held him. Loretta was an extraordinary person in our lives, and for the 17 plus years she was in Alex’s life she was an exceptional Gran, and we were blessed to have her in our lives.
Despite the rest I needed, Alex roomed with me so I could bond with him and my attempt to nurse my child was something I so desperately wanted to attempt. I had read up on nursing and believed it would be in the best interest not only for his health and wellness but mine. And so, rooming together was the first step.
That first night, a Friday in the year 1990, Alex met his big brother Steve, his Godparents Helen and Lanny Light, his Baube and Zayde and reunited with his Gran. A big night for a little fellow who was not even twenty-four hours old. He was drawing attention and gaining the love and approval from those he met. Richard and I could not stop marveling over this little miracle that we “worked” so hard to conceive.
However, it was not smooth sailing…Within days, Alex was not nursing, and even bottle feeding was unsuccessful. We went to lactation classes, and we both failed, and I had to feed him with a dropper, similar to a sick little bird. His pediatrician nor the lactation specialist could figure out the situation, and yet a mother knows when there is something wrong with her child. I kept asking questions only to be told not to look for problems.
One evening after inviting family over for a home cooked meal I sat down to feed Alex with the dropper, and he started projectile vomiting, and it was black (BLOOD). We called into his pediatrician’s office, and we were told to come right in on a Sunday night. Within minutes of a quick exam were ushered to UH Rainbow and Babies Children’s Hospital where Alex was admitted. After a late night of testing, they prepared us for the worst a bowel obstruction which meant extensive surgery. We sat among other parents going through the same or worst diagnosis’s, and we listened, and paced, drank coffee and coke holding our baby and dozing on and off.
It took two days to get a diagnosis which was rare in our circumstance, but Alex had Pyloric stenosis. This is an uncommon digestive disorder in infants that blocks food from entering the digestive system. Typically, if found it is found in the first-born male of the mother and Alex is my second born male. It is corrected by surgery, and he had surgery. Because he was my second born, they did not consider this diagnosis until everything else ruled out and a medical student actual felt the olive shaped pit in the intestine which is a giveaway symptom.
Now we had a healthy baby, or so we thought until Alex was about eighteen months old. Although thriving well and happy, he had a habit of head banging. Also, he had GI problems that his doctor felt required further diagnosis. Alex was also prone to Strep throat and ear infections but did not register the feeling of pain until it reached the maximum fever pitch. A visit back to Rainbow and Babies for intensive studies kept our precious toddler in the hospital. Although he was not diagnosed with Autism or Asperger’s at that time, we did meet with Dr. Max Wiznitzer, and many of the symptoms were revealed.
- An increased head circumference
- GI Issues
- Head Banging
- Hi- Intelligence in areas beyond training
We came home with no diagnosis, and it was recommended we attempt to toilet train and watch for additional symptoms. As with many males, Alex was delayed in potty training. Once he was diagnosed on the spectrum, it provided us with answers why. However, our medical team never considered the early diagnosis.
First grade, Fire Drill! Alex hides under his desk and will not come out. His teacher practically had to pull him out from under his desk as he hovered holding his ears in terror. We were called into the school. This brings back memories of going to Sea World and Alex hiding under the seats in the arena of the Shamu Show; the echoes made his ears hurt. Going to the circus was always an event. Alex enjoyed it until he got there, then the noise was so loud and the lights so bright he would bury his head in my lap. It was at this meeting with the school psychologist that it was suggested Alex might have Aspergers / Autism.
1996 my heart skipped a beat – my perfect baby boy – now what!
The last 21 years have been difficult. However, they have been a journey that has led us to a life of promise, hope, and great love and affection as a family. We have fought the devil of a diagnosis that we thought was our enemy until we (all of us) learned to embrace and accept that this is what makes Alex and us so unique, special, and US! Without Autism, we wouldn’t be who we are today!
Alex didn’t just develop Autism in 1996, he was born with it, and we loved him in utero and from his emergence into our world that he shares with you. He should not be judged for his diagnosis nor should we, but he has been and so have we as have so many others. Autism is not a disease that is contagious. It is neurologic and sociological, and it is what makes us all special in this world.
Alex like many others will never be cured, but he adapts to the world around him just as we all should, and I ask each of you, to learn to be tolerant with the Alex’s of the world who may look different, think different, walk or talk in their unique manner. Remember, if they are different to you, you are different to them as well. Join in and wish them a Happy Day whether it is their birthday or not. Don’t wait, tomorrow may or may not come.
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