Letter to a mom with a child on the spectrum

Letter to a mom

This letter was modified to keep the mothers name and child’s name from the public but the info is useful!  Please share.

Hi Nancy, (not her name)
First let me introduce myself.  I have a 10 year old son with autism named Bird.  He was diagnosised severely autistic 8 years ago.  Since then he has learned to speak, play tennis, trumpet, attends class with 30 kids in the general education setting and pass the SOL’s (standards of learning all children take in the state of Virginia).
I understand your fear in the word autism.  I died when I was told on May 23, 2002 that my son was autistic.  I drank for 4 months and cried.  Then I woke up and decide that they could call him a Leper, Purple People Eater or Cosmically Challenged and it would not matter.  What really matters is that he makes the most of his life and gains enough skills to be happy and independent and at the ripe old age of 10 he actually has except perhaps paying bills, saving money and taxes!
I wanted to let you know that if the school is willing to give you the autism label that you should take it!  If your son is more than 18 months behind cognitively than he needs to catch up and it will be far easier at 5 than at 10 and he will have a lot less to learn.
In order to determine his cognitive intelligence there is a test called the VB-Mapp by Mark Sundberg.  Your school has a copy of it and can give your son this tests to truly determine where he is next to a typically developing 4 year old.  It has 20 criteria ranging from toileting to math and social skills and delineate specifically where his areas of strength and weakness so that you are able to work on what he needs right now.  You can buy your own copy here if you like http://www.difflearn.com/product/VB-MAPP_Verbal_Behavior_Milestone_Assessment_and_Placement_Program/verbal_behavior?gclid=CJWcpY-53aYCFUx95QodGjZ40g it’s $69 and you need both books.  We used something called the ABLLS when my son was younger to help him but this is an updated version.  I gave my son the test and the school gave him one as well and we worked on updating it together.
Further, Dr. Vince Carbone is coming in March to Virginia and is just amazing.  He saved us behaviorally speaking and turned my husband and I into people taking a rigid and incredibly autistic kid into a compliant child with autism.  My son would only eat chicken nuggets until age 4 and now at 10 eats sushi, Mexican and his favorite is Korean BBQ!  We took him to Nicaragua 2 summers ago and he had not one problem being in a strange place, eating different food around people who spoke no English ALL because of the behavioral aspect of working through his issues.  Here is the link to sign up for Carbone http://www.poac-nova.org/ .
I would take Chris (not his name) to Children’s in May (we waited 6 months for Georgetown) just to hear what they say about him. Do not be afraid of autism!  If Chris does not have autism it sounds like you still have a lot of work to do and if he does autism has a treatment (not a cure) called ABA/VB http://www.mariposaschool.org/learning-materials.  I recommend staying away from the weird diets, supplements, pills, HBOT and the like as they do not work.  Autism is not a death sentence or tragedy it is an opportunity to create a wonderful and loving person out of someone who is seeing life in a very different way.  One of my best friends is named David Hammrick and he is 30 years old with autism.  He did not speak until age 4 and NOW has a masters in meteorology, a girlfriend, an apartment and a great paying job as a weatherman!  He is happy and a great person to boot!  He drives a car, goes to parties and flies all over the country speaking to people about his life.  His story is here www.weatheringautism.org and my story about his inspiring me is here https://pvbiamomma.wordpress.com/hope-and-autism/
Sorry for the book.  I have worked for 6 years helping parents with children with disabilities and feel really strongly that they have endless potential if you always work towards the goal of success in 5 years ellipses ellipses.
Call me when your ready to talk or need to be heard!
Best,
Shannon

Mother of Peep, Herd and Bird (yep, changed their names too not that anyone really cares!)

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