Jeremiah was born a couple weeks early, I also was Group B strep positive, and the cord was wrapped around his neck at birth. They had to give him oxygen and he spent the entire two day hospital stay in the special care nursery. When we brought Jeremiah home he never seemed fully satisfied after a meal. Instead he would scream after eating, spit up more than the usual, and would not sleep unless he was laying across my chest. After trying different tactics (soy formula, rice formula) his pediatrician thought he may have acid reflux. He prescribed a small dose of liquid Zyrtec and even after only one dose Jeremiah changed. The spit up became less, his wails disappeared, and at only two months old he began sleeping through the night in his crib. We were happy.
For the most part Jeremiah behaved like most normal babies. He babbled, he played peek-a-boo, he loved his paci, he slept good, he ate good, and was growing up strong and healthy. Jeremiah met the majority of his milestones right on time. He crawled late at 10 months, but it didn't seem like a big deal. At his one year check up he received multiple vaccines, but he never endured any side effects. After his first birthday his development seemed to slow and he walked very late at 17 months. Again I thought some kids just take their time with things and surely it wasn't anything to worry about.
On Thanksgiving day 2007 Jeremiah went into respiratory distress. When we finally realized something was wrong with his breathing and were able to get him to the hospital he was near death. A nurse just happened to walk by and notice that his lips were turning blue and immediately started working on him. I will never forget the feeling of almost losing your child. I prayed and I cried and I begged God to not take him from me. I told him it wasn't time for Jeremiah to go and he couldn't have him. I don't know if he was listening to me, but I know that after a week in the hospital Jeremiah's breathing stabilized. He had bronchialitas and we also learned he has asthma. Dan and I were not too surprised as Dan had horrible asthma as a child and spent much of his early childhood in and out of hospitals.
I thought everything was behind us, but then we began to notice something new. While Jeremiah's peers were beginning to form small 2-3 word sentences Jeremiah was barely talking. He said small words and very little of them. He mostly pointed to communicate. We were concerned and told our pediatrician. He referred us to Cardinal Glennon where we had Jeremiah's speech evaluated. At the time Jeremiah was 2.5 years old, but he was speaking at an 18 month old level. I was shocked, because while I knew Jeremiah's speech wasn't up to par I never thought it was that off course.
Flash forward to October 2009. Jeremiah was now 3 years old and starting his first year of preschool. He was receiving 60 minutes of speech/language therapy. Things were going well and only after a couple months of school we could already see major improvements in Jeremiah's speech. He was using more words, bigger words, and he was even beginning to form small sentences. We were happy.
I will never forget the night Dan and I went to parent/teacher conferences. It was April and the school year would be ending soon. It was raining and it was 6 o'clock in the evening. Jeremiah's teacher was telling us how well he was doing in the classroom, how he has improved so much throughout the year, etc. Then she said something that took me off guard..."I have been watching Jeremiah and I believe that he is displaying some autistic tendencies." I blinked, looked at Dan, looked back at Jeremiah's teacher and I felt completely baffled. Dan's sister Anne had said something of the sort when he was much smaller, but we never took it seriously since she wasn't anyone of authority and she wasn't an autism expert neither.
When we left the conference Dan asked me if that meant Jeremiah was like rain man...I didn't know what in the world he was talking about. He went on to explain this movie Rain Man, it was about an autistic man. But I couldn't listen because I kept thinking that my baby had something wrong with him and it was right under our nose all along.
I immediately went to see Jeremiah's pediatrician, he had me fill out a checklist and he determined that Jeremiah's results were borderline. He referred us to the Knights of Columbus at Cardinal Glennon. It took us 5 months to finally get an appointment and in the meantime while I waited for the day to come I was kept busy with mounds of paperwork. They basically wanted mine and his entire life history. I was asked about my pregnancy, any other health concerns, Jeremiah's medical history, Mine and Dan's medical history as well as our families, Jeremiah's diet, Jeremiah's development from the time he was a baby to now, etc. One question in particular struck a cord with me though.
I was asked if Jeremiah ever flapped his hands or arms. Jeremiah had done that since he was about a year old. He actually started hand flapping when he was 9 months old, but every time he would do it he had his head down looking at the floor and there his shadow would be. I thought Jeremiah had discovered his shadow and was playing with it. I thought it had been cute, and even when he continued doing it, particularly when he was focusing in on objects and became excited, I still didn't think much of it. But now I knew. I just knew in my heart that was my first sign. I didn't know it at the time, but that was the first red flag that something wasn't quite right.
October 19th, 2010 we had our appointment with the Knights of Columbus. They administered many tests on Jeremiah, specifically speech and occupational tests. They scheduled us another appointment for November 18th, 2010 where they would present their findings to us.
November 18th, 2010 came faster than I had imagined. It was my bestfriend's birthday, but instead of being joyful and celebrating with her I was concerned about my son. That day when I walked into the room filled with doctors, speech therapists, occupational therapists, psychologists, and psychiatrists I felt it on me like a heavy, wool coat smothering me in the middle of a hot summer day. Before they told me I knew. But I sat down, smiled, and nodded politely when they told me Jeremiah's diagnosis was Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). In layman's terms it is a mild, high functioning form of Autism. It is on the Autism Spectrum Disorders, and from research I have learned it is almost like a combination of classic autism and asperger's syndrome. These children fall somewhere in the middle and it is very difficult to diagnose. They said Jeremiah was of normal intelligence, they said the good thing was that Jeremiah did try to communicate and interact with others (he smiled, he laughed, he talked, he played), and they said with therapy, time, and patience Jeremiah could grow up to lead a normal life.
All this is very well and good, but at the time it was no consolation for how I was feeling. I felt lost, sad, and angry. How could this happen? Why did this happen? Did I do something wrong? I think the scariest thing is there were no answers to these questions. Though research and studies are being conducted everyday, science still does not know entirely what causes autism, why some children get it and others do not, if there truly is a link to autism and vaccines, and even if someday they find the answers to what causes it, they still do not know if they can or will ever find a cure to it. I hope someday they do, so parents can prepare themselves and maybe someday children will not have to live with this disability.
Jeremiah's autism is mild, but there are moments in which it is very difficult to deal with. He is getting older, he receives therapy, and therefore each day gets a little better than the day before. But we still have times it is hard. I still have days where I wonder....I wonder why us? I think to myself it isn't fair. I get scared for his future...will he overcome this obstacle? Will he always need special ed or will he be able to integrate to a normal classroom someday? Will he ever talk completely normal and at his age level? Will he ever have friends? Will he be able to do things normal teenagers do like go to concerts and learn to drive? Will he go to college? Will he get married? Will he ever have children of his own one day? And then I wonder if and when Dan and I have more children will they have autism too or will we get lucky next time?
But either way it goes I know I am lucky. I am lucky to have Jeremiah in my life, he is mine, and I love him, and accept him for who he is. It hasn't even been a full year since Jeremiah's diagnosis and as a family we are still learning about autism, we are still on our path to closure, because nothing can prepare you for something like this. Some days are better than others, but each day is a new day, and so long as we have each other then I know everything will be okay. Today we are happy.
If you think your child may have autism do not hesitate because early intervention is essential. Contact your pediatrician to have him/her evaluated. Autism is not a death sentence, but it is life changing. The sooner you know what you are dealing with the sooner you can work towards a happy and successful life.
If you have a child with autism please email me or send me a link so I can read about your story. If you have any questions feel free to email me (you can find my contact info on the contact page). I do not have all the answers so if you have been raising an autistic child longer than I have then perhaps you can give me some advice. Thanks for reading!
