My book about autism

I’m in the very very early stages of attempting to write a book about my experiences with Jais and autism. This is just one little brainstorming writing session- completely full of typos, and un-edited. But, I thought I would send it to you guys to see what your thoughts were. This is the first time I’ve ever written down my labor story, and it was very difficult and emotional . . .

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Into the late hours of the night, his squeals and babbles echo through the hallway. I have not slept soundly for 5 years. The day I became pregnant, I started worrying, maybe even abnormally so.

I was 23 years old, a college graduate, and an Air Force Wife. Facing the uncertainty of adult life and all that it entailed was overwhelming enough. But, to add to the stress of that, I was half a world away from my mom and sisters who were cornerstones of my heart. When deployment became an everyday discussion in my husband’s career, and an inevitable future, that was the last straw. I prayed for guidance, understanding, patience, and a sense of calm in what felt like an emotional tornado in my heart. Like an irrational thought often does, the idea to have a baby in order to defeat loneliness popped into my head. And it seems less then two weeks later I was pregnant. I knew I was pregnant before I even was, before it registered via the little pink lines. Because I had insisted I was pregnant so many times before, only to waste ten dollars on a home test, Chris didn’t believe me. He refused to buy a test, and I lay defeated in the bathtub, drawing circles in the water over the life forming inside my belly. Like, he always does, Chris gave into me and we purchased yet another pregnancy test, this time it turned out positive, and the anxiety began. I had already been on anti-depressants, coming from a family of substance abusing emotional wrecks. So, therapy was already a part of my life. Now, though there was a real concern. I could no longer have emotional tirades and go walking down the street in the dark insisting I was going to hitchhike back to California . . . all the way from where we were in Texas. Each sobbing episode would affect my unborn child, and I was terrified. I was on Lexapro at the time I got pregnant, which was not considered safe for a pregnant woman or her baby, so I was switched to Zoloft, a much safer option. Taking me off of anti-depressants all together was not even an option because my emotions were so volatile, even on the medication.
My emotional outbursts were no longer fueled by jealousy or feelings of inadequacy. Now, I was facing some real crises. I began to fear for the health of my baby, I worried about diseases, miscarriages, deformations, and genetic disorders. I worried myself sick, but worked hard to keep my heart rate down in order to maintain a safe and healthy balance for the both of us. The first trimester was full of tears, prayers, questions, and fears. But it seemed like the first day of the 2nd trimester I woke up a new woman. I felt happy, balanced, hungry, and ready to exercise.
I didn’t stay away from caffeine, I allowed myself one Pepsi a day, and I even snuck one or two mountain dews throughout the 2nd and 3rd trimester.
Jais developed beautifully. I gained a healthy 30 pounds, and my healthy baby boy was perfect inside my uterus. At 38 weeks I went into labor. Chris was a navigator on the C-130 at the time, out at Pope AFB in North Carolina. I woke up at 6am feeling contractions. I walked around the house, and recorded every contraction, seven minutes apart. I showered to ease the pain, 6.5 minutes apart. I decided it was time to call Chris. He came home from work and we were off to the hospital with our cameras and bag full of cute baby outfits. After I was monitored and examined, I was sent home and told that I was not in labor, but just experiencing Braxton hicks. Since it was December, we decided to go Christmas shopping. By this time my contractions were 5 minutes apart. It was 11am and I was miserable. Pushing the cart through the BX, I had to stop every 5 minutes and squat on the ground in pain. Everybody asked me if I was okay, and we explained that I was just experiencing Braxton hicks. The ride home seemed like it was the longest ride ever. Chris decided to stop somewhere, and then we were detoured the long way around. I was contracting the whole time, and each one were stronger then the last. When we got home I insisted Chris call the hospital and explain that I was in a lot of pain. They insisted again it was Braxton hicks and advised me to take some Tylenol pm and get some rest. I took two Tylenol pm, but was unable to rest. After an hour at home, and no relief or break in the contractions, I cried and begged Chris to drive me to the hospital again. When I got there, they seemed annoyed to see me, and said there was no room in triage and that I would have to wait in the waiting room until there was room. I was in extreme pain and could not sit still on the hard leather benches. In the bathroom of the waiting room I began to bleed. After begging the nurses for a bed, they finally gave me some rest in triage. The same doctor that had checked my dilation that morning, checked me again, and insisted I was still not dilated enough to be in labor, or admitted. He said that I was simply dehydrated. I was hooked up to an IV, and my contractions were not monitored, nor were the heartbeat of my baby. Three hours went by with me laboring, 5 minutes apart, 4 minutes apart, 3 minutes apart, and then my mucous plug came out. At this, Chris called the doctor over to see me. They hooked me up for contraction monitoring finally, I was crying because of the pain, and the nurse told me that I needed to be still while she hooked me up, and that I was fine, this wasn’t even real labor. The doctor confirmed that it was in fact my mucous plug, and checked my dilation again. He announced that I was right around 4 and perhaps could be admitted finally. He then said he was going to bring over another doctor for a second opinion. As soon as the other doctor stuck his fingers in to check me, his face looked concerned, he said “You’re at a 10, ready to push.” From there it was a flurry and scurry of medical procedures. I was wheeled quickly down to the labor and delivery room. It was discovered there was not monitor on my baby and as soon as they hooked up Jais to a monitor, things got very urgent. I was given an oxygen mask, I was briefed by a surgeon and informed I may be getting an emergency c-section. It was explained to my very quickly that Jais needed to come out now, and there was no time for an epidural. I was given something in my IV to help with the pain, but I FELT EVERYTHING. They broke my water, and I pushed once, after that, Jais’s heartbeat was at a very concerning 30 and I was told that an episiotomy was going to be done, and forceps were going to be used. I felt those scissors cut my skin. I felt those forceps squeeze into me and pull out the baby I was supposed to push out with my inner woman strength and instinct. There wasn’t even time for Chris to cut the cord, or for me to hold Jais, as was written in my birthing plan. The birthing plan might as well have not been written, it was gone like the beautiful labor I was supposed to experience. Jais was whisked away from me before I even got to look at his face. I couldn’t hear him cry. I begged and begged to see him, to hold him, to feed him on my breast. I begged to kiss his little cheeks, which were marked red where the forceps grabbed him and pulled him out of his warm womb. How scary it must’ve been for him. My poor sweet baby who was supposed to make his way safely through the birth canal, was rushed out, his little heart barely beating, rushed under the lights, wondering where his mommy was. Chris couldn’t film the labor because of the emergency state we were all in, but was finally able to turn on the camera once jais’s second apgar was taken and he started breathing on his own. I’ve watched this video only twice, and it breaks my heart every time. ON the video you can see me, face flushed in fear and pain, eyes wide with tears and panic. You can hear me asking to see Jais over and over again, asking if he’s okay. And then you see in the corner, the doctor who insisted I wasn’t in labor. He was a resident, on his way to be a pediatrician, doing rounds as an OB. We went to the hospital director a week later to file a formal complaint about him. We were gently coerced against doing so, and with a seemingly healthy baby boy in our arms, we left the hospital without even being able to tell our story to a pair of caring ears.
Looking back, I wish I fought for myself. I wish I had the confidence and strength to insist I was in labor. I wish I had the knowledge to insist my baby was being monitored. I wish I had the chance for a peaceful labor. This is why my second baby was born with the aid of midwives, and it was everything my first labor was not.
Jais was healthy, after his second apgar, and a small bout with jaundice in his first week, he was beautifully healthy. He had a few ear infections, about 8 his first year, but besides that he was a very beautiful “bouncy baby boy”. I can even say he was an extremely good baby. Some people might remember with cloudy vision that their baby only cried when hungry, tired, or wet. But, seriously, this was Jais. He was happy, quiet, easy to transition, and extraordinarily independent. After Jais was diagnosed with Autism, we reflected back to try and see when it was first noticeable. We watched videos of him as a baby, we looked back at pictures, and we even looked at the notes in his baby book. I can honestly say that I feel it was apparent from day one. And, I personally in my heart believe that his traumatic birth set it off. I don’t believe that it caused it; I believe (without any medical evidence or scientific research to back me up) that he had a genetic disposition that was set off by his traumatic birth. I hope and pray that this is not the case, because then I can put the blame back on myself- why didn’t I insist I was in labor? Why didn’t I insist they monitor my baby? These questions plague my heart daily.
But, if there is even something to blame, then am I not loving and accepting my son for everything that he is? If I feel angry, am I somehow betraying Jais? I NEVER want Jais to think that I don’t love him for exactly who he is. Sure, I want to help him rise above autism, have all of the opportunities he deserves, become everything I know that he can be, and have all that life has to offer. But, if he’s never “cured” of autism, if he never crosses over into “neuro-typical” status, I will still believe he is complete and perfect exactly how he is. He is beautiful and complex in ways no other human being in the world is. If he does in fact become “cured”, I can honestly say I will miss the “autistic Jais” that I knew. When you have an autistic child, you mourn for about a week, the child you thought you’d have- the walking at 1, talking at 2, neuro-typical child that you’ll brag about in the playgroup. And then you move on. And I’ve spent every day after, and will spend every day in the future falling in love with the CHILD THAT HE IS!

You look into the eyes of this beautiful handsome boy. And you hope and wish he would have everything, every opportunity, every experience, and every chance that he deserves. You look into his eyes and send a wish into the future that he will be safe, that he will be healthy, and that he will fall in love . . . that somebody will fall in love with him. Not because like every other average woman, you simply desire to be a grandma, but because you just want him to feel life, feel warmth, feel the comfort that is being a husband, having a wife, being in a family.

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