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.
Here’s the one that I bought:
Summer Infant In View Digital Color Video Monitor
Oliver meal: banana + sweet potato pancake + granola. All organic, GF, and vegan.
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.
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.
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: