The other day my extraordinary kid was...let's just say not so helpful in public. My friend turned to me and said "He's a extraordinary kid". It made me laugh. He still is extraordinary but that day was a rough one. I did change our schedule which is really hard on him. Extraordinary kids have rough days and as a parent it can be wearing.
Now let's look at the other side..you're a kid who goes to Kindergarten all day. You deal with certain noises that are painful and maintaining eye contact with people makes you uncomfortable. You come home on the bus and expect to rest after your sensory overload day and your mom puts you in the car right away to go help her clean up the church after a huge event. It's no wonder my extraordinary kid had a hard day.
I have a Bachelor of Science in Psychology and a minor in early childhood education. I almost have my masters...only a internship left. Throughout my education I was big in not labeling children. I would say that holds true of myself until this past year. This past year when my insurance company decided certain services would no longer be available to Jayden without a diagnosis. Also dealing with teachers who don't know what techniques to use because honestly they don't know what they are dealing with. Even calling the dentist and telling them about Jayden before he comes in what to expect. A diagnosis might be helpful in those situations.
We set off for this adventure of a diagnosis last year. Jayden's pediatrician suggested we see a doctor who practices pediatric developmental behavioral health. The visit didn't go so well and if I could make a suggestion here I would suggest when you have your child assessed go for a team approach. After our visit with the doctor I knew I would never bring my child back for the follow up visit. I talked to Jayden's pediatrician and we discussed having him to go a hospital that has a team approach. I have a great pediatrican! All was well until my insurance decided they didn't want me to do it and stated Jayden would have to go back to the original doctor. My reason for telling you all this info is when your insurance company tells you no to something don't give up. I wrote a letter and had my sister-in-law who has experience with extraordinary kids edit it. With her help I came up with this....
(I have changed the names of the people in this letter.)
"To Whom It May Concern:
I am writing this letter in response to an insurance denial for my son Jayden to have a team evaluation from Oregon Health & Science University (OHSU). When my pediatrician first gave me the choice between seeing Dr. Nameless and going to OHSU, I thought seeing one person who would focus on Jayden would be to his advantage. I was wrong. Dr. Nameless spent at most 5 minutes trying to communicate with Jayden. Jayden doesn’t trust strangers. He didn’t say one word to her and spent most of the time ignoring her. Dr. Nameless then informed me that he was most likely mentally retarded. I’m pretty sure most professionals don’t use that term. I’m still not clear how Dr. Nameless made that judgment when Jayden didn’t even speak to her.
After that appointment I did some networking and discovered that many people had similar experiences with Dr. Nameless and would not recommend her. The point in seeing Dr. Nameless was to receive an evaluation report that could be used either to provide a diagnosis or to be used in IEP planning. Dr. Nameless did not provide either of these things.
According to Jayden’s Individualized Education Program (IEP) goals he needs help in the following areas:
1. Adaptive/Self Help
2. Social Skills/Behavior
4. Occupational Therapy (Fine motor)
5. Pre-Academic Skills
In the classroom he needs help on attending group activities, transitioning, interacting with peers, following teachers’ directions, help on language based activities and comprehending new concepts. He exhibits delays in communication skills and fine motor skills which negatively impact his academic performance and his ability to learn new skills. He has a variety of issues and could greatly benefit from a team approach evaluation.
October 20, 2010 I had a conference with both Jayden’s kindergarten teacher and special education teacher. In this meeting I was asked if some sort of testing was being done outside of school. Jayden’s special education teacher said it would be very helpful to know what is going on from professionals so she could use specific strategies to help him in his learning. She confided she too is a little lost as what will help Jayden best. An accurate and thorough evaluation that addresses Jayden’s deficits as well as his strengths and provides us with a more concrete diagnosis would provide a baseline for how to best assist Jayden to reach his potential. This type of evaluation would be helpful not only to his teachers now but also to others who will work with him in the future - teachers, therapist and his parents.
My hope is you will read this letter from a mom who loves her child. I’m just trying to do what is best for Jayden and occasionally I make mistakes. There needs to be another evaluation for Jayden because nothing was accomplished in the first one. I believe OHSU’s program will give us the best chance for success. People often refer to Jayden as a “puzzle”. I don’t want my child always feeling like a puzzle too. Please reconsider a team evaluation from OHSU. Thank you for your time and feel free to call me to discuss this matter.
The insurance company called me two days later and told me they also felt it would be best for Jayden to have a team approach assessment. Don't give up. This incident was easy to solve but there will be others that are more difficult.
Thank you all for your wonderful comments last week. I really appreciate them. In the coming weeks you will meet some moms of extraordinary kids. I'm excited to hear from each one. If you have an extraordinary kid and have some experiences/resources to share please email me.