Friday, February 5, 2016

Somewhere on the Spectrum. Written by Jennifer Bortz

Somewhere on the Spectrum

I don't even know where to begin as I write this. My son Chase is 4 and is the most loving, kind, sweet and happiest of little boys. Chase has autism along with apraxia of speech and a feeding disorder. Our journey began at the age of 2. Chase hit every milestone for the most part "on time". As a baby, he was magical. He slept well and was a champ at breastfeeding. Things went very smoothly. At all of our post-partum check-ups we both did great. I was not "depressed" and he passed all the autism surveys they had me check mark. Looking back, things were "normal". I had no idea how much my life would change in just a few short months. At 18 months Chase wasn't walking. I was not too concerned until family members started commenting about it. I had the mentality that when he was ready, he would walk. At our 2 year wellness visit the doctor had asked if I had any concerns. At this point Chase was walking (mostly on his tip toes) but he wasn't saying any words, just lots of babble. I mentioned this to the doctor and he wanted to see Chase walk. I also mentioned that he "flaps" his hands a lot. The doctor took seconds to watch Chase walk and as he was looking at his computer said to me " I think he could possibly have autism". My heart sank. I will never forget that moment. I was alone at this appointment and I will never forget the feeling of time almost standing still. I didn't know what to say or do. I felt as though the doctor was very cold and more concerned about getting to his next patient. He quickly wrote down some names of developmental pediatricians and mentioned early intervention and was out the door. That was it. This was the start of our "new life".

I immediately began my search of new doctors. There were very long waiting lists. In the meantime I contacted early intervention and they met with us right away. Chase at this point had what they called SPD. Sensory processing disorder. I had no clue what this was. We began speech and Ot in our home. We got very lucky and wonderful therapists who have since become very close friends. We also enrolled Chase into Good Shepherd Pediatrics for additional speech therapy. We were on our way. I had "autism" on my mind a lot. It was always in the back of my mind, creeping up on me and stirring feelings of anger and sadness. I felt that my son would be ok and with these new therapies, he would make progress and "catch up" and everything would be fine. I can admit now that part of me was in denial. We had opportunities to get further testing done at a new up and coming place in my town but when the time came, we backed out. Partially because we didn't know enough about this new facility and partially because I think we were scared. We kept on loving our son more than anything and watched his progress,and we were hopeful that everything would be ok. He was still the most loving and happiest of little boys. I cherished everyday I got to spend with him. We had fun everyday and went on adventures and fell more and more in love with one another.

March 2015- The day arrived that we would meet with Dr. Karen Senft. After months of being on a waiting list, the day had come. At this point, I was ready. I had come to realize that my son needed more. More therapy and more answers. Our private insurance only covered so many visits for therapy and we were in debt because we refused to "not" take him. I had by this point researched enough to know that we needed help and by receiving a diagnosis, it could only actually help us. I bought every book I could find on autism, researched endlessly and became obsessed with learning everything I could about "autism". On this day, it was confirmed. My son was autistic. I cried. My parents were with us and we asked a lot of questions and we got pointed in the right direction. I had to stop crying and get myself together and be strong for my son. And that's exactly what I did.  

I allowed myself time to be sad. There were so many mixed feelings from anger to sadness to "why us". Its only fair to let yourself feel these things and I did, but I was careful not to let them take over. I am a person of faith and I struggled and questioned my faith at times during these initial few weeks. It was difficult. In time, my faith only got stronger. When thoughts would enter my mind as to whether or not my son would ever talk, or have a "normal" life or go to college or get married; I'd stop myself. I don't know what the future holds. How I can predict this? It was one-day-at-a-time.

With a lot of hard work and persistence, I got the ball rolling and set up appointments and therapies and did what I had to do. At this point my son was 3 and had "graduated" from early intervention and moved on to a wonderful classroom at our IU. (laughing) I will never forget that first sweet, little, non-verbal baby; leaving me for the first time in his whole entire life. My mom and I were both a mess. We watched as he took someone else by the hand and left us. Those were the longest few hours of my life. ( I'm sure many of you can relate) As it turns out, school was the best thing for him. He loved it. He was blessed with wonderful teachers and the entire staff to this day just amazing. Chase has always loved going to school and his therapies. We are lucky. We make it fun for him and he just looks forward to going.

After months and months, everything finally got into place. School was going smoothly, therapies were underway and wrap-around services started. In time, it all got figured out. Its exhausting work. Not a day goes by that I don't have something to worry about, but its all worth it in the end. My son is making great progress. He was recently in our local newspaper  (the morning call) regarding his progress in feeding therapy. I was and am very proud of him. Each day, he grows. Each day, he amazes me. Each day, he makes me so proud. We are a great team.

This journey for me has been a roller coaster,as I am sure it will continue to be so for the rest of my life. My faith is stronger than ever, despite having been tested greatly. I have an amazing mother who has never once left my side. She has been my rock and salvation. My father, the strongest man I've ever known, has also been there. They have cried with me and held me up when I was weak. They are the most loving grandparents to my son. They love and cherish and adore him. We are blessed to have such a wonderful family.

As I write this, Chase is on his way home from school. He rides the bus (only one way, because I start small). He loves the bus and when it pulls up outside of our home, he's smiling from ear to ear. He exits the bus and says bye-bye to Donna (the driver) and stands at the end of the driveway watching the bus go down the street. Chase then heads inside for his favorite snacks (chips or cookies) and some alone time and tv. He has usually had a pretty busy day by the time he arrives home. We often start early with therapy and wrap-around services but we finally seem to have a set schedule (for now).

I am grateful for this journey. I am blessed to have the child I have. I wouldn't change any part of him for anything. I wouldn't change him for the world; I only wish I can change the world for him. It's a mess out there. I am learning as much as I can to protect him and strengthen him and prepare him. With the small, supportive circle I now have, I am hopeful I can continue to be strong and do my best for my son. He is he is the love of my life. He is the most kindest, sweetest, happiest and most loving little boy I've ever known. I'm not sure how I got so lucky but I thank God every. single. day. xxxxxxxooooooooooooo

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1 comment:

  1. Thanks for sharing your story Jennifer, I am sure it will help someone knowing that there is help out there for them. You have done such an amazing job with your son. Anyone that has been around you and your son can tell that all the love in the world is shared between you all. Your son is very specail and you have been given this very special challenge because God knows that you can handle it. I am sure there are times that perhaps you want to give up but YOU DON"T. You and your family are very special and with all the love and support that you have from them and your friends plus the special therapists that are helping you and Chase in no time at all he will be graduating from high school and ready for his own life. I know you have a long road ahead of you but because of the person that you are you, Mike and Chase will succeed. You truely are an amazing lady and a wonderful mother. I feel privilaged and honored to know you and your family. Keep up the excellant work. Love to you all.