Trust Your Gut & Trust God

IMG_4093**Originally posted 1/1/14

Chase was around 15 to 18 months when we started to notice a regression in development. He seemed to have hit a wall when it came to progression of speech and had even started to lose the few words he was saying the months prior. We expressed concern to his pediatrician and he told us to “give it some more time, he was still young.” As the months went on, and still no new words and no new developmental skills, we continued to press his pediatrician for answers or guidance, but he kept telling us, “he’s a boy, boys can be late talkers compared to girls, give him ’till he’s two.” So we waited, and we prayed for guidance and discernment. And then arrived baby number two, our sweet boy Miles, one month before Chase’s second birthday.

People would tell us Chase was reverting or rebelling with a new baby, “just give him time to adjust” or “he’s just being stubborn.” But Chase and I knew deep down that something wasn’t right, our guts were telling us differently. I spent many many hours laying awake at night, researching and reading online, crying, and praying to God to please let him start talking, learning, developing normally. His pediatrician still wouldn’t say the word (Autism) or give us any guidance or affirmation as to what to do or where to go! In fact, he brushed off our concerns of Autism all together. But the regressions kept coming.

At that point we took things into our own hands and began the journey of advocating for Chase…

I wanted to make sure I covered all my bases, so I took Chase to have his hearing checked. A friend referred me to a lady who used to run the KITE Center for kids with Autism. I went to her home office for an initial assessment to see if she could do anything to help. She work with Chase for about an hour and tried to get him to point to pictures, play with certain toys, repeat words, but he had never met this woman before and wanted nothing to do with it. She then tested his hearing, but couldn’t get an accurate reading because he wouldn’t cooperate, so she had us come back the next week to try (and fail) again. She proceeded to charge me $150 for her time and a week later emailed me a couple of paragraphs with her suggestions; which basically said that Chase had “behavior issues” we needed to address and that we needed to have a strict routine at home to work on these behaviors before she could help him. I was IRRATE! His delays and regressions were not BECAUSE OF to his behavior. I believed and KNEW with all my heart it was something more than behavioral problems.

We were at a loss and no one would tell us what to do. I didn’t trust the previous hearing test we had done so I took him to the West TN Hearing and Speech Center to have his hearing professionally tested (which turned out to be perfectly normal) and was finally given some useful information. The technician doing the testing talked with me about Chase’s delays and why we were having his hearing tested and told me to get one of the fliers at the reception desk and call TEIS; that they would come out to our house and do an assessment for free and determine if Chase needed any types of therapy. Hallelujah! A small breakthrough! WHY COULDN’T CHASE’S PEDIATRICIAN HAVE TOLD US ABOUT THIS PROGRAM MONTHS PRIOR??? This is something I still struggle with and don’t understand.

TEIS came to our house a couple of months after Chase turned two to assess and determine where he stood developmentally. He wouldn’t cooperate for most of the time, but they saw enough to decide that he needed speech, developmental and occupational therapies. And so those began. We didn’t have a formal diagnosis at that point, but I hoped and prayed that with some therapy he would catch up to speed quickly.

We started speech therapy two days a week and developmental therapy an hour a week in our home. The therapists were so sweet and helpful and one of them told me about a program at the Therapy and Learning Center (TLC) for children with special needs. This daycare program is very hard to get in to and very good, but if a child is receiving therapies through TEIS they get priority and bumped to the top of the list. I immediately got him on that list and Chase got in the first of September. He began going 3 days a week, was still getting speech twice a week at home and began getting his developmental and occupational therapies at TLC while he was there 3 days a week. The therapists were all great, and I cannot say enough wonderful things about his teachers Miss Kecia and Miss Leslie. They helped him so much, but it was still not enough in my mind.

**On a side note, shortly after we found out about TEIS I switched to a different pediatrician. I had gone to our new doctor one day when Chase was sick, because our regular pediatrician wasn’t in that day. I mentioned to the new doctor a few of my concerns about Chase and his lack of talking, and his response was, “Well, I’m not equipped to diagnose anything, but I can tell you from the few minutes I have been in this room with Chase that he shows several signs of Autism.” I switched to this doctor from that day forward. I appreciated his honesty and for validating my concerns. I wasn’t crazy after all!

I tirelessly researched more online and decided to make an appointment at Vanderbilt with a developmental pediatrician to have Chase formally assessed. It was going to be four to six months before we could get in, but at least we were on the list! It was some of the longest four months of my life!

December 4, 2012

I will always remember this day. Chase, little Chase and I all drove to Nashville for his visit with Dr. Zachary Warren at Vanderbilt Children’s Hospital. They told us the appointment would last anywhere from two to four hours, and it did. I was physically sick and a nervous wreck leading up to that day and all throughout the visit. We had filled out pages and pages of questionnaires prior to the visit and still they asked us hundreds more questions about Chase’s development, behaviors, etc. Then they performed a series of activities and tasks with him to see what he knew and what all he could do. After what seemed like an entire day in that exam room Dr. Warren came back in with his official diagnosis…AUTISM. We knew it.

I couldn’t even cry. I wanted to. He asked if we had any questions. I had a million, but couldn’t think of one. He asked if we needed a minute alone. I just wanted to leave. As soon as we got in the car the tears came. I’m still not sure what they were for. Sadness. Relief. Fear. I was overwhelmed with every emotion, but the one that hit me the most was LOVE. A deep, protective love for my sweet baby Chase. I knew, even before that visit, that I would do ANYTHING for this child, but now God was putting us to the test. I will never forget pulling out of the parking garage at Vanderbilt and Chase said, “We are going to have to move to Nashville. Chase can’t get the help he needs in Jackson.

And so the healing journey began…

Today, looking back, four years post diagnosis, my advice to any parent questioning anything developmental or health related about your children is TRUST YOUR GUT, but foremost TRUST GOD! God’s timing and the people he placed in our lives, at just the right moments, are so evident in hind sight. In the midst of stress, struggles, fears, etc, it’s not always easy to trust that God has a plan, but once you make it through the storm, if you continue to trust in the Lord, His plans are always clear. Another piece of advice is don’t always assume that doctors know best. YOU are the one who knows your child inside and out, better than any doctor out there. You are your child’s voice and advocate. Don’t give up and don’t stop fighting for your instincts!

“Have I not commanded you? Be strong and courageous, do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

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