Our Long Story

Let's go back to the beginning. My husband & I married in August 2002. Being only 22 years old, we wanted to wait 5 years until we started our family. We thought we were being smart....planning it all out. HaHa! Two years later, I was having some noticeable health issues, so I decided to see a new OBGYN. Dr. Michelle Pepperell, who now lives in Texas (sad), ran some test and discovered that I have Polycystic Ovary Syndrome. I was told that there was a strong possibility that I would have difficulty conceiving a child. And to be honest, at the moment, I was more concerned with my sudden weight gain & strange facial hair than having a child. I was only 24 at the time, and I was still trying to land a teaching position. Starting a family was the last thing on my mind.
Now, fast forward a couple more years. After doing long-term substitute teaching for a couple of years, I went back to work at Morton Buildings as an administrative assistant (I call it secretary). I loved it! And Corey's career was taking off as well. We were both doing well & in stable careers...the time seemed right. So, I went off my birth control pill in May 2007. Why was I on birth control if there was a low chance of conceiving? It was to help with my PCOS. Anyway, knowing that this was probably going to take years of trying, we weren't in any hurry...we were both very happy with our life, careers, family, etc. We would just leave it in God's hands. Then, in November, we got the shock of our life....we were pregnant. We couldn't believe it! We hadn't planned on it happening that quickly! We were so happy! God had blessed us with a miracle!
Right away, I started with the typical pregnancy experience....morning sickness. Only, mine wasn't morning...mine was all day sickness. After 12 weeks, I was hoping it would subside...like everyone said it would. It didn't. It got worse. I was losing weight, becoming extremely fatigued, and it was becoming impossible to work. So, my doctor put me on short term medical leave. She told me if I didn't start taking care of myself, my symptoms would get worse. And if I didn't start gaining weight, she was going to hospitalize me.YIKES! So, I took a leave from work & rested as much as I could...and I was still getting sick. During this time, my husband & I discussed our future. Baby names, nursery colors, college funds (hey, I'm a planner!), etc. We also decided that we wanted one of us to stay home with our kids. Since my income was half of my husband's, it was clear who should stay home. So, after my short term leave was over, I gave my 2 weeks notice. I was still sick, and I didn't know how I was going to make it through 2 weeks of work. And some days, I couldn't.
Shortly after that, my husband's grandfather passed away. We made a road trip to North Carolina for the funeral . I packed lots of root beer & chicken noodle soup....the 2 things that I could faithfully keep down. Halfway through the trip, I noticed I was swelling. My shoes no longer fit, and it hurt my legs to walk. When we got back, my doctor put me on light bed rest. A month later, I was placed on complete bed rest. My blood pressure was rising, and I was already having contractions. I remember celebrating my 28th birthday with all of my family in my bedroom...that was hilarious.
The next day, Sunday, June 22nd, I woke up and realized that my water had broken....3 weeks early. Ten hours later, Ethan was born. I don't remember the first time I held him. We have pictures, but I don't remember it. They tell me that it was because of exhaustion and my extremely high blood pressure. Ethan was given formula right away due to his blood sugar being low, and he had to be in an incubator for days in order for him to increase/regulate his body temperature. They kept him in the nursery most of the time. By the time I was aware of things again, I went to see him. I remember wheeling into the nursery (I was in a wheelchair), and not knowing which baby was mine. That was overwhelmingly scary. Then, they led me over to his "bed". The nurse gave him to me, and we practiced "skin-to-skin". To me, that was the first time I remember seeing my child. He was perfect.

Ethan responded well to treatment, and he was able to go home with us. They said he was fine. He passed his hearing test, his car seat test, he was maintaining body temperature, and eating very well. Not too bad for 3 weeks early. But neither of us were out of the woods just yet.

After a horrible pregnancy & an early delivery, I was soooooo glad to be going home WITH my baby. However, when we got home, Ethan & I both were still recovering. Two days after we were home, we took Ethan for this first pediatric appointment. After a couple of tests, we discovered that Ethan had jaundice. So, we had to get him all set up with a billy rubin blanket. During all of that, my swelling still hadn't gone away like that said it would with delivery. So, I had several OBGYN visits during the same time Ethan was going for his appointments & tests. Not only were we overwhelmed with a new baby, but throw in a bunch of doctor visits (forcing me to leave my baby after only one day!), tests & unknowns. After a week of going in for "check-ups", they FINALLY gave me water pills...realizing that my water retention wasn't going away on it's own. After another week, Ethan & I were back to "normal"....well....the new normal.

Everything from there on out was pretty typical parenthood stuff....until he was about one year old. When he was one, that's when people started making comments to me & Corey. "Why isn't he talking? Do you read to him? Do you talk to him? Why isn't he walking? Do you work on that with him?" OF COURSE I DO!!!! But I tried to ignored their comments. I just figured he would do it all in his time. A month later, he started walking. And he would babble...none of it made sense to me, but it was a sign of growth. When he was 18 months, Ethan still wasn't where he "should" be with his talking. So, my sister gave me the information for an Ear, Nose & Throat Doctor. She thought we should have his hearing tested. GOOD IDEA! This will give me some ammo when people make comments to me about Ethan not talking! I'll show them!!!!

So, we had Ethan's hearing tested, and he responded to sounds & his name. However, one of the tests showed that Ethan had fluid behind both ear drums. This meant that he was hearing but not clearly. This meant Ethan was about to have tubes put in his ears. Well, that meant I had no ammo for my negative community, but Ethan was going to be helped & could hear!!! YEAH! We were so excited to have an answer.

This is Ethan with Daddy on the day of his surgery, May 19, 2010. He still has those socks...he loves them! After his surgery, we were anticipating words to be springing forth in the next couple of days. Well...that didn't happen, but I did notice something. When he & I would play our "What's a Cow Say?" game, he would laugh at the sounds. For example, when I asked him what a cow would say before the tubes, he would say, "boo". Well, after the surgery, when I would say, "moo"....he would CRACK up laughing! So, this told me that there was already a difference in his hearing. He would be making progress in his speech in no time!!! And he did....sort of.... 

By March 2010, Ethan's speech was still very sparse, but we were hoping the tubes in his ears would be just the thing to encourage his language growth. Also, Ethan was 21 months old, and his behavior was starting to become an issue. Nothing out of the ordinary....typical toddler stuff. So, my sister let me borrow her book Dare To Discipline by Dr. James Dobson. As I was reading this book, I came across a section that talked about exceptions to the rule. I remember was he was giving an example of a child with autism & the child's particular characteristics. The ones I remember were walking on tippy-toes, delayed speech, and lack of eye contact. There were more, but those are only ones I can remember now. And I remember reading that section over & over again.....and crying. It was Ethan. That was the moment that I knew. The words on the pages were describing my child. Well...I stopped reading that book, and began reading about autism. The more I read, the more I knew in my gut that this is what my child was dealing with at his young age.

I wasn't about to tell anyone about my findings other than my husband, my mom & my sister....the people that know me the most in this world. All of them discounted it, saying to give the tubes time to "work".  By Ethan's 2nd birthday, he was becoming more withdrawn from his peers and family. We saw his peers developing social skills that Ethan was clearly lacking. I remember one day a family member asked me if I ever thought about Ethan having autism. I was heartbroken. My shameful secret was out. I played it off as if I hadn't, but I was dying inside. We couldn't ignore the signs any longer.

Late the Summer of 2010, we were at our town's annual festival parade. I was looking forward to Ethan & I watching the floats, clapping & dancing to the bands, collecting candy in our bag, and enjoying a celebration that I look forward to every year. My plans didn't exactly go as planned. What's that saying? If you want to make God laugh, tell Him your plans! Ethan wouldn't go near the street without panicking, so we decided to just keep him close to the house but still outside. He wasn't happy there either. So, we watched the parade alone in the house...looking out the window. This, I decided, was my new life. Watching the world happen from the window of my house....just me, my husband & Ethan. I was devastated. We were alone.

A few weeks later, a friend of ours who was at the parade with us, told us about an Early Intervention Program. She told us that this program provided free screening. They would check his development in every area. HALLELUJAH! A resource that could help us! So, I immediately contacted them. Ethan & I went in for the the screening. Out of 7 areas....Ethan was delayed in all of them....severely delayed in 2 or 3. You would think this would be a low point, but it wasn't. They were going to assign us a coordinator who would be able to do further screenings as well as hook us up with any needed services that Ethan would need. HELP WAS COMING FOR MY BABY!!!!! This was a major turning point! This is were we met Glenda - Our Fairy Godmother.

Glenda met with me & we talked all about Ethan....pregnancy, birth, development and so on. After the interview, she set up a time for her & two therapists to come & play with Ethan. The day arrived and everyone was present.....me, Corey, Glenda the Fairy Godmother, a speech therapist and a developmental therapist. They played with him for about an hour. When it was over, it was decided that Ethan would be placed in a developmental playgroup twice a week, participate in speech therapy, and his name would be submitted to the Easter Seals Autism Diagnosis Clinic. 

Ethan was placed on a waiting list for the Easter Seals diagnostic clinic in October 2010. The earliest they could get him into the clinic that was closest to us was July 2011....9 months away. Ugh. Or we could go to a clinic that was an hour away, and they could get him in in May 2011....7 months. So, we chose the later. And, so, began the LLLLLOOOOOOONNNNNNNNGGGGGGGG  anxiety filled countdown. The whole time we were waiting for the clinic, we were still trying to diagnose him ourselves. Does he have it or not? If so, what can we do for him. What are his specific issues. We were driving ourselves crazy. May couldn't get here fast enough.

In the meantime, he continued with the Early Intervention Program. He quickly started his developmental playgroup twice a week. And he loved it! He loved going to "school". When we would get there, he would run right in....no goodbyes or tears or apprehension....he loved it! And he thrived....this was one of the best things for him. We also started him in speech therapy. A speech therapist would come to our home once a week for an hour. I thought this would be wonderful, but Ethan had a difficult time focusing. Since he was in his own home, he wouldn't change his behavior simply because the therapist was there. He would play with her toys, but he wouldn't engage with her. He would take the toys behind a chair....he wanted the toys, but he didn't want to talk. So, we called Glenda our Fairy Godmother, and she found us a speech therapist at our local hospital. Ethan did soooo much better because it was a new environment. When he went into the speech room, he knew he was going to have to talk. We had good sessions and bad sessions, but it was much better for Ethan to go to her. This is also the same place we had Ethan's occupational therapy.

Ethan didn't start occupational therapy until after Christmas 2010. The Early Intervention Program put on a Christmas party for it's staff & students. I was so excited. We were going to finally meet parents & families going through the same things we were facing. I dressed Ethan in his cutest Christmas shirt & off we went to our local library....were the party was going to be held. When we walked in, Ethan wanted to go to the right...where we normally go on our weekly library day. However, the party was in a room to the left. Meltdown #1. I should have known at that moment that things were not going to go like I had hoped.  Once I finally coaxed Ethan into going into the party room, he was met by one of his playgroup teachers. We also saw Glenda our Fairy Godmother. They led us over to the tables where Ethan could make a snowman craft,and he did that with his teacher. Then he wanted to play with the balls that the children were throwing in different containers (like the bags game). Well...we told him he couldn't take the balls out of the containers. He had to wait in line for his turn & then throw the balls......meltdown #2. Then, once he recovered, they had us all gather for story time. He did fine. Then they handed each child a bell to ring as they sang Christmas songs. HUGE meltdown #3. So, I took Ethan out of the party room & into the bathroom.....a quiet place where he could calm down. Little did I know that the bathrooms had movement activated hand dryers that went off as soon as you walked into the bathroom. MAJOR MELTDOWN #4....MAYDAY, MAYDAY, WE ARE GOING DOWN! Ethan was so upset, he was crying without sound. It was horrible. Once the dryer went off, we both sat on the floor in the corner of the bathroom, rocking & crying...both of us. It was awful. Once we both recovered, we exited the bathroom to a group of about 10 concerned staff members all trying to help Ethan & I.....meltdown #5. All Ethan was saying was, "bye-bye?" over & over again. I just told the staff thanks, but we were going to go home. They were all so sweet & understanding. They gave Ethan his gifts, party snacks, and a bag of other goodies. This was the worst day of my life. Alone again. We didn't even fit in here.

But, ironically, it wasn't the worst day ever. Because of this, the PARENTS at the party told Glenda our Fairy Godmother that their child suffered from similar sound issues, but because they were working with an occupational therapist, they were able to "endure" the party. Glenda called me with the idea of starting Ethan with an OT, and I quickly agreed. We were both crying...both of us upset for Ethan. I wasn't alone.

And over the last several months, we met more & more families, staff, and shirt-tail friends that were dealing with similar things. And even our family & friends were beginning to see/understand our situation. We weren't alone, and we were starting to reach out for help & support from everyone that would let us. Ethan continued with playgroup, speech & OT. And it finally came....May 4th at 7:30am.....the Easter Seals Diagnosis Clinic was about to focus their attention to our child. The day was long, but Ethan was AMAZING! He didn't have ANY meltdowns even with the new surroundings, sounds, and people. Prayer works baby! We felt that everyone who was observing & studying Ethan got to see the real Ethan...his strengths & weaknesses. Testing concluded at noon, and we were to meet the panel back sometime that afternoon. They would call us when they had reached their conclusion. So, my mom took Ethan home with her (she works in that town..she took a half day), and Corey & I stayed in town. We went to lunch & discussed the day. We both felt that whatever decision was made was going to be accurate...we both felt that they had heard/witnessed all of our concerns as well as experienced Ethan's sweet personality. They got a crash course in Ethan, and we both felt that that outcome would be a true reflection of our child.

So, they called us back about 2pm. They sat us down, showed us his scores, where he fell within the range for each one, discussed the video we had made, and on & on & on. And then the announcement. Ethan has "classic" autism. You would think I would have lost it, but strangely I felt relief. The waiting was over, the long day was over, and the jury had spoke what I knew to be true. Yes, I was still sad....and overwhelmed at the journey ahead.....but we now had even more resources...more people to help us & Ethan. I was relieved.

This was just a new beginning for Ethan & our family, but with the help of some amazing people placed in our life, Ethan is thriving! He is spelling more words today than he was SAYING a year ago. And Ethan's story is just one of many. But I am so thankful & blessed to be Ethan's mommy. He is my entire heart, and I will do whatever it takes to help him, to reach him, to support him, and to love him. And even autism won't stop Ethan....just wait & see.

1 comment:

  1. Hi Jessica! Thank you so much for sharing your story. Your little guy is so very cute!!! :) My son was recently diagnosed with SPD and I am reading all I can to learn more about it. Luckily, I found your blog and... I LOVE it!