It has been a while since I have written and I thought I would like to explain why.
The past few months have been rather trying. Earlier this month my wife and I finally learned why my son has been developmentally delayed. While we were grasping a straws trying to figure out what was wrong we consulted a Pediatric Geneticist at the U Med School who ordered a host of genetics test to rule out certain genetics disorders - one of those test involved the PTEN gene. It turns out that the PTEN gene is the culprit in all of this, my son has a disorder known as Bannayan Riley Rulvacaba Syndrome (BRRS). This particular disorder is rare (I'm not sure how rare, but if the genetics department at the U of U needed do some research before they could explain it to me and my wife it must be pretty rare). He then has been evaluated by developmental pediatricians and a pediatric psychiatrist, who have concluded that he is non-traditionally Autistic (meaning there is no clear guidance on how to help him) and has developed to the level of a 9 month old (at age 2). Needless to say it has been an emotional roller coaster.
With that I have found little passion for blogging, and I really don't plan on posting on a regular basis for an extended period of time. I probably ought to officially resign my membership in the Bloghive advisory board, so that another blogger who is actively blogging can provide a much more contribution to that group. I appreciated working with all of them.
As I learn more about special education funding, I am truly shocked how little state assistance is provided in Utah. My future blogging may focus heavily on that issue.
Until then, adieu......
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11 comments:
Good luck in your search for the help that your son will need. I'm sure blogging would feel tedious if I were facing something like that.
Ditto GJ - we'll miss your careful issues analysis but your site feed is on our newsreader so we'll catch you whenever you post.
Our best to you and your family.
RC
I'm sorry to hear the news. It's true about the funding here in Utah. I teach Special Ed. in the Alpine district and the minimal amount of support and funding is outrageous. Good luck with everything. It's not the end of the world!
Pramahaphil,
Sorry to hear about your son's condition. I hope things work out for him and for you.
I'm sorry to hear about the challenges facing your son and your family. There is a lot of research work going on in the autism world these days, so perhaps there will be future advances that will help. In the meantime, it looks like you'll have your work cut out for you.
I'm surprised you haven't had a good experience dealing with the folks that do early intervention services for kids under 3. We deal with "Kids Who Count" which serves the area where I live in Utah County, but there should be an agency that serves your area as well.
They have been wonderful in helping us with our son (17 months) who has spina bifida. They come to our home each week to work with him on physical therapy. We have an annual assessment with them where they find out our financial situation as well as our boy's developmental situation. They match us up with the necessary services for him and let us know what percentage we are expected to pay for those services based on our income.
Be sure to check our http://www.utahbabywatch.org/ for the services in your area.
As a regular reader, I want to thank you for your prior postings, and wish you well with your family.
It's bad enough when one of our own has to leave, much less when it's caused by personal hardships. We're looking forward to the day when you're able to return to us.
I am so sorry to hear about your son's condition. He is in my prayers, as is your entire family.
Hello,
I was just looking for more updates on my son's syndrome to give to his teachers for the new school year and ran into this blog. I don't blog, don't have the time.
My son also has Bannayan Riley Rulvacaba Syndrome. If you would like to email and compare any notes you are welcome to do so.
My email address is angelalu65@yahoo.com
Sincerely,
Angela
Hello,
I was just looking for more updates on my son's syndrome to give to his teachers for the new school year and ran into this blog. I don't blog, don't have the time.
My son also has Bannayan Riley Rulvacaba Syndrome. If you would like to email and compare any notes you are welcome to do so.
My email address is angelalu65@yahoo.com
Sincerely,
Angela
Best wishes for your son. I really enjoy reading your blog. Take your time - and I will keep your blog in my bookmars.
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