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Finding the best help to start a team

Posted by on Oct. 15, 2014 at 9:21 PM
  • 3 Replies
Hi, I'm Vicki!
I have an Autistic son and an ADHD with mild dyslexia daughter, now ages 25 and 23. Both progressed spectacularly, due to the team I assembled. This team started with changing doctors.
It's all to common to have medical doctors who are, hmm, what's the politically correct way of putting it.....not the best, most experienced, correct professional, making determinations, recommendations and prescribing powerful medications to the most sacred gifts you will ever experience, your children.
This is going to sound....elitist?
I was living in a starter home community (not where rich people go to get the best medical care available in the country). But knowing that my co-pay expenses were the same no matter how competent or incompetent the physician, I went shopping for a new pediatrician, associated with the top award winning hospital, in the most prosperous suburb in St. Louis.
This would be St. Lukes Hospital in Town &Country/Chesterfield (don't you just love those rich city names:-). There I talked to my new "besty" doc about my concerns, and he arranged to have my son evaluated by the top child psychologist (she did not treat, only evaluates, and refers..and that referral was needed to get the door open to the best!). My new pediatrician be told me whose practice I needed to get into, and which of the 3 specialist was considered the best in the state. My son was evaluated on the Autism spectrum, I told her who I wanted to see, and she wrote the referral. There were no appointments available with the very best doctor for 2 years, so I took an appointment for 4 months out with #2, and asked to be put on #1s list in case of a cancellation, telling them that I only needed 1 hours notice to be there, and thanking them, profusely! Three weeks later, I got the call, 1 hour notice to be there for #1:-D
Scrambling out of the house as fast as possible, we were in!!!!
After review of the psychologists report, and talking to me for 30 minutes, while observing my son's behavior (recording his notes), he examined my son. He confirmed Autism, which at that time was ineligible for insurance coverage, so he told me, for insurance purposes it would be coded brain impairment-other. He was just what we needed, conservative in drug treatment, very knowledgable, directing me to resources (very few back then). Peer reviewed studies of therapies (remember, the internet was brand new, even libraries didn't have computers).
Because I already had a child in his care, my daughter was able to get all the best care, too, with no mis-diagnosis interfering with her progress.
My non-verbal Autistic child is now 25, taking no drugs, a University Graduate, employed full time, has a great group of friends who share his love of music, and will be going back for his masters next year. My daughter is 23, taking no drugs, a Junior at University, is a great graphic design artist, getting all As.
It was assembling a great team, that included getting the best doctor, leveraging every skill I had to get the very best out of the schools (I can give an example from another reply posting, as this was the most difficult manipulation of the system that exists), researching & implementing the very best practices at home and school consistently that made the difference. Sounds exhausting?...it was, but well worth it. Imagine the peace of mind knowing that they can make it in this world, simply be using all that God gave them! Priceless!!
by on Oct. 15, 2014 at 9:21 PM
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Replies (1-3):
akaGLIA
by Vicki on Oct. 16, 2014 at 12:13 PM

BUMP!

JTMOM422
by Platinum Member on Oct. 16, 2014 at 12:21 PM

wow thanks for sharing. It shows what fighting for what your child deserves will get you. Thanks for sharing

akaGLIA
by Vicki on Oct. 16, 2014 at 1:12 PM
1 mom liked this
You are very welcome! I do believe that the method I used was the key to helping my son achieve the best life possible with in a system that is not structured around their needs. Schools are trying their best to deal with the ever increasing numbers of Autistic children, but none that I interacted with structured an environment that optimized his ability to learn and thrive. I decided that this would be my job! When my son was diagnosed, Autism Disorder was identified in 1 out of 10,000, and by the time he graduated high school it was 1 in 100.
I have just posted how I created the school team, manage the team, and the difficult transition from half day to full day. My team building methods are what worked for us, and is just a guide. Every Autistic child is different, and at different levels of the Spectrum. My son was non verbal, and utilizing every resource, he transitioned into Aspergers, then to barely on the Autism Spectrum as an adult.
I'm hoping my experience across the Spectrum will help moms to find the perfect path for their beloved!
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