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.
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.
Today was the second of four appointments and, within those, was the first of two evaluations. Last week was the first appointment which was exclusively questions about Oliver, this appointment (and next week’s appointment) was the evaluation portion, and the final appointment is the diagnosis and next step discussion. As I’ve said before, I will be posting after each one to give other parents an idea of what to expect. We arrived and were shortly thereafter called back by the doctor. We followed her to the room where we had also been for the first appointment. She gave him the option of two toys to see if he’s shows preferences, offered him kitchen utensils and toys that require pretend play, and other developmental tests through toys and play. She asked me many more questions then had me try and get his attention while he was engaged in his own play; I couldn’t get him to look up. Then, as he played alone in the corner, she said that she was going to lightly blow a whistle. She said that a “normal” response would be for him to turn his head to see the noise. I told her that he does not like loud noises, but gave her the okay to see his reaction for herself. She proceeded by blowing into the whistle and, as I sat by his side, I watch him lift his head from his play, stare blankly into the corner he faced, then cover his eyes as tears welled up and his chin erupted into an immensely sad, pouted lip. He covered his eyes, then covered his ears as he screamed. After a few minutes of this, he buried his face into my lap as his screams transformed into more of a hyperventilation. I rubbed his back, talked to him, shhh’d him in attempt to calm him. Giving him a bottle of coconut water and a toy aided him back to contentedness but it took around 30 minutes to get him smiling again. She tried to see if he would sit in a chair at the table, but he can’t sit still for the life of him, so sitting him in a chair set him off again. She asked a few more questions and then we closed the meeting and went on with our day. She said that next time a doctoral student will be joining us, and his session will be video taped in a new room. She told me that I will be with him most of the time, but I may be asked to leave the room to see how he does with me leaving briefly. I’ll post again after next week’s appointment.
Have any of my followers gone through a diagnostic evaluation process– if so, did your appointments look like ours? Comment any similarities or differences to give other parents an idea of what to expect.
Today’s appointment was what they call an intake appointment. This was an hour and a half, where the doctor asked me 10 million questions. If you read my posts about our evaluation at the early intervention center, you know that he acted completely abnormally and was freakishly well-behaved. He contradicted many of the things that I was saying for the first time and it made me feel worried that they may think that I had made these behaviors and delays up. Of course, being the awesome team that they are, they completely understood and apparently see a lot of abnormal behavior in their evaluations. Anyways, to get back to the present, today’s evaluation went much differently. Oliver cried. And cried (and cried and cried and cried). He didn’t want his drink, he didn’t want his snack, he didn’t want his toys, he didn’t want to be held. The inconsolable crying made it hard to remain calm and focused on the doctor. He flapped his hands, ran in circles, spun in circles, got into a downward dog position, closed his eyes when the doctor looked at him, hit me, pushed me, covered his ears, etc. I tried the only thing that I had left and gave him my notebook and pen to doodle with and he was suddenly entranced and allowed our meeting to set forth. She asked me about his health, his diet, his sleep, his behaviors, his tantrums, his triggers, his regressions, his repetitive actions, his obsessive actions, and how he does in certain situations. She really liked that I had been keeping track of every single one of these things and brought a 9 page document full of them all, categorized by Behavioral, Social/Emotional, Speech and Sign, Regressions, and Sensory (I highly recommend that any parent with concerns do this, as it can be extremely difficult to remember everything, as regressions come and go and each day is different from the next). By the end of our meeting she had said that today’s appointment wasn’t even focused on Oliver and she, peripherally, saw a plethora of characteristics that she looks for and that the next two meetings will be evaluations/observations and then the final meeting will be the findings and a discussion of next steps. I feel like we’re headed in the right direction and I must say that it felt really nice to be heard.
Oliver and I walked on a trail near Puget Sound before going into the UW Autism Center. We noticed the birds scavenging for leftover lunch crumbs, doctors decompressing, and groups of young people on sail boats soaking up the sun. As I felt the ocean air trace my body, I looked down at my beautiful boy and felt a sense of calmness overcome me. I love my boy with my entire being and while all of these appointments and books I have been reading have been to help me better understand what is wrong with my precious angel, I realized something that forever changed my mindset: there is nothing wrong with my son. While this may feel like a politically correct, “sugar coated” statement, I feel that the line between normal and abnormal is a spectrum in all human beings, including those who are neurotypical. While, yes, he has been facing certain struggles, they are his struggles and his peers have their own struggles that are different than my son and probably different than their friends’ challenges. He IS different, but so is everyone else. I fear for his future in being thought of as “less than” or “weird”, but I know deep in my soul that he is a unique little boy and that the only thing that all of these children have in common is that they are all different from one another. Encourage your children, your friends, your family, and your inner voice to stop thinking of your child as different, and start thinking of your child as different just like everybody else.
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.
Because 30% of people with Autism Spectrum Disorder also experience seizures, I decided to replace Oliver’s audio-only baby monitor with an audio and video one. I am loving being able to see when he wakes up or what he’s doing if I hear an odd noise. I feel a lot more at ease knowing that I can check in on him without having to go in and wake him up.
Hi there! Checkout my page titled “My Bookshelf” to see what I have read, am currently reading, and plan to read soon (all autism-related books). Please comment with any book recommendations or comments on the books that I have listed. Enjoy!
I’m interested in following more autism/sensory blogs here on WordPress.
Comment below with your (or one you enjoy reading) blog’s URL and I’ll check it out.