Don't Call My Son Stupid!

I apologize in advance for my vents, but when the Boy is home sometimes I need to vent.  This time it's not anything the Boy did at all.  For the small amount of time I've spent with him, he's been great.  I just wish he'd get back on a sleep during the night, stay awake during the day schedule.  What's bugging me now is the level of uneducated ignorance that exits in this world when it comes to people on the Autism spectrum.

Yesterday was a tough day.  I really wish people were more understanding of the Boy's many quirks and sometimes his argumentativeness that borders on rudeness.  Even knowing he has Asperger's doesn't seem to matter.  I still get hit with "it's not Asperger's, that's just an EXCUSE."  I guess if someone has a broken leg and can't walk then that's "just an excuse" too.  I am so sick of it I could scream!   Asperger's is a real problem and he has issues with social skills.  Get it!

I think the Boy is oblivious to these people and their ignorant attitudes, so I'm the only one banging my head against the wall so to speak.  It seems that the judgmental attitude should have ended when he got diagnosed with a very real problem.   You can look at him and see there's a problem.  Why be so ugly and mean about it?  

The social awkwardness slowly seemed to magnify as he became an adult.  I don't know how to help him with that just like I didn't know what to do when he was kid.  Now there are programs for autistic children that weren't there for him when he was that age.  One day I'm sure there will be programs for young adults that just aren't out there now.  He's ahead of the curve and that's not a good thing.

Today the Boy had an appointment with Dr. W, his psychiatrist.  Insurance does not cover any of it so we have to pay the entire bill.  The Boy missed his appointment before Christmas because he was at his dad's house and I couldn't get his dad to take him to the appointment.  I had forgotten about it until the day of the appointment and tried to cancel the appointment when I couldn't get in touch with the Boy and his dad wouldn't go home and wake him up.  Of course, I was charged for that missed visit as well as this one.  Fortunately, Dr. W only charged me half for the missed visit.   Does the Boy's dad help with any of this?  Heck no!  He can't even be bothered to take him to the appointment ever.

On the way home from the appointment, The Boy and I were talking about the Boy's college housing for next Fall.  This year he went from the dorm to an apartment right off campus.  This has been a lot more money than I thought it would be and the Boy is depending on his dad to help with rent.  The Boy said he asked his dad for the rent when he was over there for dinner the other night and his dad told him he didn't have the money.  Another lie!   

 The Boy had his friend W, there to witness this.  W's dad is totally involved in his son's college and pays for everything his scholarship doesn't pay for, including buying him a car and paying the insurance, etc.  It really hurts the Boy when he sees this and he then sees how his dad treats him.  There's nothing I can do to make his dad help out more except maybe take him to court which would cost me a lot of money and may not amount to anything.

The Boy knows he will have to go back into the dorm next year because he can't afford the apartment.  I just don't get it.  How does that man sleep at night?  We're not talking about that much money because the Boy's financial aid covers almost everything.  I just don't get it!

One more vent then I'll stop, I promise!

Please don't call my son stupid, especially when he may hear you.  Call me anything you want, but watch out when you talk about my son.  Anyone who calls a special needs person "stupid" is the lowest of the low.  Who's the real stupid one?

Not my son!

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.