Three years ago I had little hope for my 2 year old son who was banging his head in a padded play pen.  My son, Simon, didn't even seem to know I existed.  When I tried to cuddle him in my arms he would scream.  He seemed content to spin objects, sit and stare at the TV, or drink a bottle in his play pen.  What was wrong?  How could I get him to join our world?

 Simon was diagnosed with autism three weeks after his second birthday.  I Googled, and Googled, and Googled, but could not find answers I could understand.  There was all this discussion of "therapy".  All sorts of therapy I had never heard of and abreviations:  OT, PT, BCBA, ASD, CARS...  none of these things meant anything to me.  What I did understand:  children were able to improve with treatment - a minimum of 25 hours of therapy each week.  Even the Surgeon General seemed to agree, early, intensive intervention is crucial to recovery.  I decided I needed to educate myself so I went online to order some books.

These are the first books I ordered from Amazon.com:

1001 Great Ideas for Teaching Children with Autism Spectrum Disorders

Let Me Hear Your Voice: A Family's Triumph Over Autism

A Real Boy:  A True Story of Autism, Early Intervention, and Recovery

The Autism Book:  Answers to Your Most Pressing Questions

Children With Starving Brains:  A Medical Treatment Guide for Autism Spectrum Disoder, Second Edition

The one that was most helpful to me was Let Me Hear Your Voice.  I needed to read a story of hope.  There just had to be a way to get my precious baby boy back!  This mother spelled it all out in a way I understood and from a perspective I could relate to. 

The first few months after Simon was diagnosed I felt like I was just thrown into the deep end without knowing how to swim.  I frantically struggled to keep my head above water and it was not graceful.  I constantly felt like I was drowning and I still don't know how I got through that first year. 

Someone asked me once to make a "things to do" list for parents of newly diagnosed children.  Here are a few of my suggestions: 

1.  Get online and read:  It is so important that you know what you are facing.  This is a treatable disorder!  The first group of therapists I talked to (who worked for the state) tried to minimize the importance of therapy and what my son needed.  Had I not read all I had from books and online, I wouldn't have known to ask for more from our state's First Steps program was willing to recommend.  You will also find all the big organizations online: Autism Speaks, Autism Society of America, and the National Autism Association.  Look to see what is available in your area.  I highly recommend you order the First 100 Days Kit from Autism Speaks.  Just Google Autism Speaks to find the website.  If you don't know how to Google, you'd better learn:  http://www.google.com/

2. Order some books, or go to the library:  I listed some books I ordered above.  It's helpful to read about autism from families who live with it and there are also books from authors on the spectrum; ie. Thinking in Pictures, by Temple Grandin.  During the first few months after your child is diagnosed you will hear all sorts of things.  I think the hardest part for me was sorting through all the garbage to get to the truth of what my son needed.  Every child is different and that truth will be different for every family.  Knowledge is power and it will help you to figure out what to do.

3. Find a support group and network, network, network!:  Who can you trust?  Other parents are a great source for information!  Parents generally don't have a product to sell, and aren't worried about rationing funding, or running a school.  Moms and dads who have been through it, are your best resource for finding out how to navigate "the system".  They can tell you where to find the best doctors, who the best service coordinators are, where to get your child's teeth cleaned.  Other parents can also give you some great tips from their own experiences on potty training, getting a child on the spectrum to tolerate clothing, and where the best schools are.

4.  Take care of yourself:  Don't beat yourself up if you don't have a 40 hour a week program instantly after the diagnosis, or if you're just not sure what your child needs right away.  It took me three months to work my son into a program and it changes as his needs change.  It's tough to have therapists in your home.  You may have to quit a job to take care of your child.  There are a lot of adjustments and it's important that you take care of yourself.  Talk therapy is an excellent idea for both parents.  Don't be afraid to ask for medication if you need it.  Make sure you have support and don't hesitate to ASK FOR HELP! 

 These are just four important tips for parents who are newly diagnosed.  There are so many issues that hit you right at the start and it takes time to get to everything.  There are government agencies that offer help, you have a million doctor visits, and there are school districts to deal with.  Add to that the financial burden you about to face and all of these things can drive anyone over the edge.  Hang in there!  The good news is that autism is treatable.  It may take hours and hours of hard work, but children with autism can recover and lead functional lives.

Today, after three years of therapy, my Simon is talking.  He wants to play with other children, and he gives me hugs.  Simon has an above average IQ of 120 (he started with an IQ of just 60).  We are still working everyday to teach Simon new things, but he learns.  Our second son, Max, is responding just as well.  There is hope.  I wish politicians in our state would not give up on our children and do something to ensure that all children had access to treatment.  We are going broke to provide our sons what they need.  Autism is treatable!  It really is!  If there is one thing I could tell everyone in the world about autism it would be that children can recover with proper treatment.  Our children are not lost causes!