Monday, April 2, 2012

World Autism Awareness Day

The month of April is World Autism Awareness month and today kicks it off with World Autism Awareness Day.  I have spent most of the afternoon reading autism news, blogs, articles, etc., anything related to Autism/Asperger's awareness.  It is so good that there is starting to be more information and support for families with children on the autism spectrum.  It is clear, however, that we still have a long way to go.

The Boy wasn't officially diagnosed with Asperger's syndrome until he was in 8th grade, yet looking back, all the signs were there.  I had never even heard about Asperger's or knew anyone who had it until he was diagnosed with it.  I knew something was wrong, but something related to autism was not even considered.   The Boy's dad and family mostly blamed bad parenting for the Boy's problems.  Bad parenting by me, of course.  I guess they considered the Boy's dad a "great" parent, but if that was the case then why didn't he step up to the plate and "correct" me if I was such a bad parent.  Are mom's always to blame?  I have to admit that I even started blaming myself and thought that maybe I was doing something wrong.  I began wearing myself ragged trying to be a better parent.

 The Boy was 10 years old when I filed for divorce from his father.  At that point, I started taking The Boy to a child psychologist.  The Boy's dad and I were fighting so much that I thought it probably wasn't a bad idea to get him into counseling.  I had tried to get him into counseling months before filing for divorce.  That didn't end up well when the psychologist asked The Boy who he liked better his mom or his dad.  When The Boy told his dad this, his dad hit the roof.  I suggested that next appointment, The Boy's dad come and we could get to the bottom of why this question was asked.  Needless to say, The Boy's dad got ugly and accusatory and the psychologist didn't have a chance to explain.  I just wanted to disappear.  I never made another appointment with him.

The new psychologist was a female child psychologist recommended through the court system.  She was very good and did help me in some of the more immediate problems I had with The Boy, such as getting him to sleep in his own bed and help during the stress of the divorce.  What I will never, ever understand is why, why, why did she not once see that The Boy had signs of Asperger's?  We saw her once or twice a month for five years.  It wasn't until The Boy was diagnosed with ADD and he was having stomach problems and withdrawal issues from his meds that the school advised me to take him to a psychiatrist to help coordinate his ADD meds.  This man, who we saw approximately once every 6 months for less than two years when he diagnosed The Boy with Asperger's.  Finally the answer!

It's difficult thinking of all the lost years The Boy could have had specific help for his diagnosis!  He fell through the cracks for so many years despite the school knowing something was wrong, me knowing something was wrong, my friends and other parents knowing something was wrong, but nobody know what that thing was.  That thing called Asperger's.

After the diagnosis I cried.  I was so relieved.  The Boy was relieved.  I know it must be hard and a blow for families to learn their child has an autism spectrum disorder when they are toddlers, but take my word for it, it's a blessing to know and to take action early than to not know and not get the help they need.  The Boy had had IEP's and speech therapy, but the diagnosis made him eligible for so much more of the help he needed.  Best of all it took "behavioral problem" out of the picture.   As a mom, I knew my son was NOT a behavioral problem.  Don't even get me started on that one!

 It was still tough.  There were always some teachers who didn't want to accommodate and The Boy's dad still doesn't think there was any problem other than that I suck as a parent.  I am just so thankful the there is such a strong Autism/Asperger's community out there getting the word out.  I hope no other parent goes through what I did.  Even if The Boy had been diagnosed when he was a preschooler, there was very little out there to help him in this state.  Now we have Mitchell's Place, which really helped The Boy when he was first diagnosed.  He attended a summer camp there and went on to do the after school program his freshman year of school.  

This is the fifth year for the annual World Autism Awareness Day and I am thrilled.  I hope it continues and helps educate the public and get the support and funding for the families, children and adults who are faced with autism every day.  I feel inspired to do whatever I can do to help get the word out.  There's no time for blame, only for action.

1 comment:

  1. Who knows why The Boy's parents and his dad would blame you; it seems pointless and unreasonable. Perhaps it was how they were all raised, i.e., everything falls on the mother - that kind of misguided nonsense...Seems they put a terrible burden on you that was terribly unfair.

    How frustrating, all those years trying to get help for The Boy, wrong diagnoses, etc.

    I'm so glad you wrote this post. :) I hope it can help others. xo