Our New Journey Begins

Oh where to begin...

It started like a typical, chaotic morning where I woke up sleepy - sleepy from having to wake up multiple times with a 16-month old who insists he needs milk every. single. night. at 1:30am... and perhaps some water around 4am. But today was different. We were going to the zoo with some friends and I was so excited for Blake to see the animals and for Kade's first trip to the zoo.

The kids ate toast in the car. Breakfast in our house currently consists of me opening a loaf of bread and handing a piece to each kid... cold. Mom of the year award right there. They don't complain and neither do I.  On an occasional day I will even toast it and put some peanut butter on it. This wasn't such a day. But, last minute I decided to give Kade a squeezable yogurt to eat in the car along with his toast. 

Let's just say that the words "Squeezable yogurt" and "car" should never be put into the same sentence. I stopped to get a Starbucks coffee on the way. The line was literally 20 cars long. So I parked my car and went to get the kids out. I opened the back door to find Kade - covered in strawberry banana yogurt. Yogurt was everywhere... in between each little slimy finger and smeared into his carseat. I was not happy in the slightest and pulled out sanitizer wipes and wiped him down and as much of his carseat as I could. 

The zoo was fantastic. The boys did great over-all and we enjoyed the beautiful weather. Kade loved petting the goats and stepping on them. He is a bull in a china cabinet. Blake was more timid and content to watch them. We enjoyed our morning at the zoo and rushed home to get ready for our doctor's appointment.

We arrived at the doctors and I knew that this appointment would be eventful. After all, we had a busy morning at the zoo and Kade was going on a 20 minute nap he had in the car on the ride home. He was bound to be fussy I was sure of it. The boys ran around the waiting room and looked at the fish while we waited for our names to be called. Little did I know that his appointment would change my life so much. I wish I had some warning. 

The appointment started like normal. The boys were weighed and measured and I laughed at how they were getting shorter and heavier. Ha! And then the questions about development started coming. I jokingly answered some not realizing the seriousness of these questions. Apparently using a spoon and fork on your own is a huge deal. As well as a 3 year old knowing his mommy's name. And then she hit me with a question that I can still hear in my mind today. "Have you considered Autism?" I looked at her and got defensive and said, "No! He is absolutely brilliant." And she continued to tell me that it is called a spectrum for a reason and that she suggest I get him tested for high functioning autism. That is when my world stopped. My stomach sank to the pit of my stomach. The appointment finished with Kade getting shots and his looks of betrayal crushed my already broken heart as I held him as he cried. I cried right along with him. I quickly gathered the kids to the car, buckled them in, and climbed into the driver's seat. I sobbed uncontrollably. I was confused, alone, and absolutely terrified.

Immediately when I got home and calmed myself down, I scheduled Blake an appointment with a developmental specialist. I wanted answers. I needed answers. I needed to know how I could help my son and if there was anything I really did need to worry about. 

I began researching everything and anything I could find on the internet. I would be convinced he had autism after reading one article and then convinced he didn't have it not even two minutes later. However, these articles revealed to me some serious concerns I hadn't realized Blake had before this eventful doctor's appointment. Ones that I figured were just unique to him and ones that I wrote off as developing differently, or perhaps a little behind in language development. I felt like I was loosing my little boy. 

Anytime he would do one of these behaviors, my heart would die a little more. The things I used to think were cute and funny became so difficult to watch. I spent the next two weeks critiquing every move and everything he said. We practiced climbing ladders, feeding himself with a spoon, more potty training, new responsibilities, kicking, throwing, and catching balls, and lots and lots of language work. We realized simple questions like "Am I holding a cup" could not be answered. We realized "What am I doing?" could not be answered. We realized many things could not be answered. It was terrifying going from the one thought of "my child is gifted and highly intelligent" to "my child can't even distinguish a cup from a lego." It was that day a week into thinking about all this that I knew there was something "wrong". That Blake needed help and I needed to know how to help him.

Our appointment yesterday shed a lot of new light on our situation. I woke up early which has been a new norm for me since this possible diagnosis. I took a hot bath, listened to some hymns, and put God's Word before me. I got ready, making sure to wear long sleeves and pants since I get very cold when nervous and scared. I woke Blake up and put him into an outfit I had laid out for him for days. Again, I grabbed a piece of bread out of the fridge for each boy and we made our way to the appointment, dropping Kade off at my mom's house along the way. Blake pointed out some things he saw out the window... only things that I had ever mentioned. And he decided this morning that my name was Steph. We arrived early to the specialists office and walked across the street to see the fountain and flowers. Blake started saying, "All aboard the flower train" and we laughed and thought it was silly. And the rest of the day that was the phrase he repeated often. One of the first phrases he kept repeating to the specialist. 

Once in the office, I sat nervously on the leather couch signing consent forms. I couldn't even comprehend the words I was reading and simply signed my name, dated it, and gave it back to the receptionist. They are all the same anyways. I sat on the couch watching my amazing husband play with our son. He found a letter A and a letter H and asked for more letters. We explained there were no more and he kept telling us that the I was missing. The doctor came and got us and he immediately looked up at her and made it clear to us that he would prefer to play with the cars and trains than go with us into her office. He brought a couple with him and the appointment officially began.

I walked in to the office and my eyes were immediately drawn to the alphabet blocks sitting on the floor. My heart sank. I knew this would take Blake's attention, but it would also show his skills and how he isn't "normal". I sat at the edge of the couch and started talking with our doctor - Doctor Karlsson Roth. It is a she which caught me off guard due to her name. She was so easy to talk to and put me at ease right away. 

During our appointment she said that on paper and studying all the evals we did, that Blake was a hard one for her to "diagnose". On paper he seems like he is developing just fine. But it isn't quantitative data, but the qualitative data that made the difference. He does so many things well and on track for a 3 year old. But when you look at him - really study him and his language and preferences - you see something is "off." She said her initial thought after just seeing him for the first time was "this kid does not have autism." But then the more she saw, the more she saw the areas of concern and the delays he has.

Blake was asked some questions, asked to perform some motor skills, and then to answer questions by pointing to the answer in a book of pictures. These tasks soon became frustrating to him because he can't understand all questions. It hurt my heart to see his frustration but I knew it was necessary. 

Towards the end of the appointment, she pulled out the criteria that would be needed to diagnose Blake with Autism. There are two parts of the diagnosis. In part A you have to have all 3 components to even move on to part B. He had 1/2 of one. So immediately she said you would have to stop right there. But looking on in to part B, he had 2 of the 4 areas of concern, including echolalia, social delay, and language delay. Our of the 7 possible characteristics of autism, he has 2.5. He didn't have enough to be given the diagnosis. Yet there isn't a "label" that he falls under really... so he would fall under PDD - NOS.... which means, Pervasive Developmental Disorder - Not Otherwise Specified. 

We agreed with her diagnosis and she was very hopeful that speech therapies and other programs could greatly help him. She believes that within 1-2 years he could be "caught up" to where he should be to enter kindergarten in terms of social skills and language. This was the best diagnosis we could ask for and the one we prayed for. I cried tears of joy at hearing this news. 

So what does this mean for Blake and our family? We will be getting Blake evaluated for Speech and Language from a private office for therapy; getting him tested by Gilbert Public Schools to see if he can be put into a developmental preschool that will help him learn language, social, and play; and going to Jump Start Southwest Autism Research and Resource Center to learn to help him communicate better. The next steps are scary and our family would LOVE your prayers through all this. 

I hesitate to even share this publicly because I don't want a label to be what people see when they look at my son. Blake may have some differences and I hate to think he will be treated differently because he has some areas of weakness. I know this is my own heart issue. 

Through all of this, God has been so faithful to me. I have never in my life felt the power of God's Word so much than I do today. His word has been my only source of true comfort and I know that God will give me the strength to take this new journey with Blake.  I was reminded God's ways are not only different that mine - which puts it on a human level and equal - but His ways are HIGHER. They are better. I may have a hard time seeing that now, but that is the truth I am putting in front of me. God will accomplish exactly what He wants through all this. And His mercies are new every day.  

God is for me in this. Today's events are exactly the ones that God has for me to sanctify me and make me more like Him. I need to trust. In these times of uncertainty and doubt, I know I have a God who is faithful and in control. His power is made perfect in my weakness.  

Please pray that God's power will be seen in Blake... 

Thank you friends.