Diagnostic Evaluation Part 3

Today was Oliver’s third of four appointments for his diagnostic evaluation series. If you haven’t read how the first two went, feel free to read back to “Diagnostic Evaluation Day 1” and “Diagnostic Evaluation Day 2”. A week from today will be the day that my son may or may not (though I’m 99.9% sure he will) be officially diagnosed with Autism Spectrum Disorder. Something about this moment feels haunting. I woke up today, a Thursday, and the next time that I wake up to a Thursday will be a day that I forever remember. Having my growing worries confirmed will offer relief, anxiety, support, challenges, assurance, fear, and love– to say that I’m feeling mixed emotions is an understatement. I don’t want any of this for my precious baby boy, but it’s what we’re facing and I want him to feel comfortable in his skin and happy with his life, so this monumental marker will be our first step towards the “healing” portion of my blog’s title. I started this blog to document our entire journey: initial concerns, growing worries, bringing it up to his pediatrician, struggling to find an early intervention center, undergoing his initial evaluation at the early intervention center, receiving a diagnosis, and throughout the healing process that I have so much faith in. I have hope for my son and I believe that with a lot of love, determination, and hard work we will make a major change. With that said, I can revisit my opening sentence: “Today was Oliver’s third of four appointments for his diagnostic evaluation series”. We arrived, checked in, changed his diaper, played with toys in the waiting room, and we’re then greeted by the doctor we had worked with the prior two appointments and a doctoral student who was apprenticing her. They were both very warm and friendly with Oliver and he responded with his usual shutting of his eyes, so they “can’t see him”. I strolled him, alongside the two women, down the hall and to the elevator, where we went to a higher level to enter the testing room. The room was very similar to the other room (small, simple, no windows), but this room had video cameras in each corner and two tubs full of toys. The doctoral student instructed me to sit back and observe unless she asked me to participate. She conducted the evaluation, while the main doctor took notes on his responses. I will try my best to remember everything, but there were so many tests they did with the toys that were being pulled from these seemingly bottomless tubs (I felt as though I was witnessing a real life Mary Poppins moment). She pulled a frog out and hopped it across the table– he hopped it back (first time to do anything like this). She answered a telephone– he held the second telephone to his ear, too (first time to do anything like this). She stacked blocks– he lined them up. She then wanted to see if he could pretend; she sniffed a flower, flew a toy plane, and drove a car. In between each of these, she first let him copy her, then would do the same action with a wooden block (as if the block were the flower, plane, and car). He did a semi-alright job at copying her initial actions with the toys, but he didn’t respond to or imitate the original actions when they were done with the block. She had a stuffed animal rabbit that had a remote control to make it hop but he was indifferent to it (he’s not a fan of stuffed animals at home, either). She brought out a baby doll and a baby bath to get him to help her bathe it. His only motive in this game was to get the baby from her so that he could chuck it across the room and then sign “all done”; he doesn’t like babies, plastic or in the flesh. While I’m sure I’m forgetting something, the last thing that I remember is her blowing lots and lots of bubbles around the room. He lit up, wobbled around on his tip toes, and flapped his hands intensely. These bubbles were so stimulating and exciting for him and I was really glad that they got to see something that is typical at home, since he had decided to do so many brand new things for them. I know in my heart that Oliver has autism, but the thought of the chance of him not receiving a diagnosis scares me just as bad as him receiving one, if not more. I don’t know if our insurance will pay for another evaluation series down the road and to know that he wouldn’t be getting the help he needs makes me sick to my stomach. Over the course of this next week, I would appreciate encouragement, positive thoughts, and/or prayers that next Thursday afternoon goes smoothly and that I am able to continue on with a level head and an open heart. Thanks everyone! I’ll keep you all updated. 

This Week’s Early Intervention Visit

Two days ago was Oliver’s first home visit from his early intervention center’s Special Educator. She drove about an hour and a half out to us and spent another hour and a half with him. She got to know how Oliver and I interact and then offered suggestions. For example, she noticed that he gets distracted, overstimulated, and frustrated easily, so she wanted to see if he could be more calm in his tunnel toy that attaches to a tent. He went in there and laid down and we were able to play peekaboo with his full attention. She talked about how social games like peek-a-boo, tickle games, and singing songs with hand motions/simple dances can improve his social issues and his language development at the same time (getting him to better connect with me is a plus, too). We also spent time doing something that I had read about in Raun Kaufman’s Autism Breakthrough– we entered Oliver’s world through imitation. We set a timer for 3 minutes where we mirrored everything he did. We colored similar patterns, dropped crayons over and over, danced, hopped, flapped our hands, and stood up/sat down countless times. He picked up on this new “game” rather quickly and smiled with anticipation while he thought of something else he could have us copy. This really engaged him and his eye contact was strong when we were doing this. After the timer went off, we tried to invite him “into our world” by asking him to copy what we did. This didn’t work out for us because he finds change challenging, but she saw real promise in him. He lit up in a way that I had never seen before– I can not recommend entering your child’s world enough. Give it a try! If you’ve done this, comment how it went for you. 

Diagnostic Evaluation Day

In about 20 minutes I will be leaving for Oliver’s first appointment of his diagnostic evaluation. This appointment will be about an hour and a half and will be discussing my concerns as well as going over reports from his pediatrician, his audiologist, and his early intervention team. The following two appointments will be two hour observation sessions, and the final appointment will be a comprehensive report covering the neurologist’s reports. I am quite nervous, simply because I don’t know what to expect. Please send good thoughts our way. I will be publishing a follow up post this evening. 

YOU SCREAM I SCREAM WE ALL SCREAM

It seems to me that Oliver is learning more and more everyday that incessant crying gets him what he wants. It is so difficult for me to allow him to cry when I know what he wants.  To encourage speech and language development, I need to push him to speak by suddenly not understanding his cries. I need to express to him that screaming and crying isn’t how we ask for milk or for a certain toy. My plan is to, from here on out, tell him, “I’m sorry buddy– I don’t understand screaming. Screaming doesn’t tell me WHAT it is that you want. Can you show me what you want? Can you sign to me what it is that you want? Can you tell me what you want?” I’m hoping that this will improve our current situation. I’m interested in hearing from others who have been in similar situations and how you addressed it. 

Autism Breakthrough: The Groundbreaking Method That Has Helped Families All Over the World by Raun K. Kaufman

I just finished reading Autism Breakthrough: The Groundbreaking Method That Has Helped Families All Over the World by Raun K. Kaufman and thoroughly enjoyed this book. Kaufman recovered from autism thanks to his wonderfully loving parents who developed an autism healing program called the Son-Rise program. It is pretty much the complete opposite of ABA (applied behavior analysis); he put everything about the Son-Rise program into an easy to understand and relatable format, which left me anti-ABA and completely inspired to start a Son-Rise program for Oliver. I wish that I could afford to attend some of their intensive workshops in Sheffield, Massachusetts.. *daydreaming*

This being said, if you have or know a child with autism, order this book immediately:
http://www.amazon.com/Autism-Breakthrough-Groundbreaking-Method-Families/dp/1250063477