Wednesday, December 15, 2010

Extraordinary Kid Series

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'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 went into the school today and the secretary told me how cute Jayden is.  She said he was in the office helping count and package the canned food.  We all have good days and we have bad days.  Try to focus on the good ones :)

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
3. Communication
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.

Thank you,

Melinda Beachell"

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.


  1. Way to go for your for fighting so hard for your son!! He will always know that you love him so much!! I hope that you get what you are looking for with the insurance companies:) P.S You are AMAZING!!!!

  2. Good for you!! I commented last week and have loved that you decided to keep everyone involved. It's always nice to have a "community" of friends to support you. You are doing great! My mom works with special needs kids and she always says "The squeeky wheel gets the grease" To you I say, SQUEEK away! Just know this isn't a just a trial, but an opportunity for growth for the entire family!

  3. I just sent you an email with my daughters story. I wanted to add to Mindi's comment. My daughters (10 and 7) are the most compassionate children in class because they understand what others are going thru. My daughter with asspergers is often paired up with a boy that is on the "spectrum". She understands his frustration and is able to calm him down better than anyone else in the school. She has been there and she is so understanding to all kids. Like Mindi said, this is a growing experience for all your family and friends as well. Prayer goes a long way. It helps when nothing else seems to work. And like I said in the email, YOU are your sons WARRIOR! Fight for HIM!

  4. There is a lot of great technology going through the chiropractic world on helping children with neurological disorders that might be something you want to look into.

  5. I just want to say keep up the good work. As a retired SPED teacher, you are doing what's best for your son. Be an advocate and push for answers! Good Luck!

  6. I thought I left a comment last post, but I don't see it. Maybe it got deleted or maybe I didn't see the word verification before I clicked out (that happens ALL the time!!!) I dislike word verification. Anyways, I thought I said something about labels and an official title. If I did, I wasn't meaning to offend. I do think having a name for your child's symptoms and behavior is helpful. And even when there is a diagnosis, it doesn't change how extraordinary or awesome they are. It just puts a name to it. Good for you for writing the insurance company. Team approaches are a great thing. That's why IEP's are teams! Jayden knew when he was choosing a family that he would be cared for and watched out and advocated with you as a mom! Lucky kid!!!!

  7. Michelle...I think I do have word verification...You mentioned it before. I'm scared if I get rid of I will tons of spam? Is that not true? I didn't see your comment last time and what I wrote this time definitely had nothing to do with it. I was totally not into labeling children for a good 10 I wrote it changed this past year. I totally can see your view. I love different opinions and don't mind when they are different than mine. You did not offend me in anyway. I started this series with the thought Knowledge is power. I want other moms to know they are not alone because for a while there I felt completely alone. I'm lucky. Heavenly Father knows and loves me and had already put friendships in place I just had to say something and I got plenty of support. I hope to share that with others now!

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  9. My sister suggested your blog as a great craft blog and mentioned that your son may be suffering from some same things as mine. I would love to e-mail about your situation and talk a little more about it and what we have done to help him. My son is four and it's been extremely difficult for both my husband and I but we feel that reaching out to other families that may be dealing with this same situation will help. Don't give up, for sure. You are his mom and will be guided to what needs to be done to help him. I understand how you feel and would be more than glad to talk about it. Thanks for sharing your experience.

  10. I am the mother of a 7 year old late-talking, high-functioning autistic son. I also taught kindergarten and 3rd grade. I have a website to help parents who are looking for ways to build developmental and academic skills at home to reinforce therapists and teachers. I learned so much about my son's true abilities and also have a ton of fun with him while doing this with him. It has really helped me to engage, encourage and empower him!
    Feel free to email me at


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