But, But...........How Did You Know?

8-8-2010
I just returned from my trip from Jamaica and all I can say is , "Yes, yes.....we are finally back!" It was a much needed trip and there were times when it was relaxing. You may be saying to yourself, "Lucky girl!", but anyone with an autistic child knows that it can be hard traveling with a son with autism - especially if you have to change flights and take connections (that's a story in itself and I will tell you in a later blog). For now, "Oh yes! Thank God! I'm back!"

As a parent with a child with special needs, many of us get tired of the stares from others,the pity remarks or of such comments as, "He seems normal. Is he ok?" Case in point - I use to be embarassed when my son (at the age of four) would flap his hands in the air, excessively drool while simultaneously hum and yell in excitement. I would tell him, "Noah, please calm down," and he would respond however using indecipherable words. Friends or relatives would look at him, wondering what was he saying while thinking, "What is wrong with him?" or give me looks of pity. I do realize largely it is due to the not knowing or those negative images of autism at times perpetuated by society at large. But I cannot blame them for I, myself, was originally in denial, and trully shamed.

It all began when I was told that he had autism (said in an earlier post). I remember originally being told by a school psychologist and honestly, I did not believe her. I remember when she explained her findings, shared her conclusions, provided a list of resources and recommendations but all I could do was stare at her, not listen to anything she said but the words, "HE HAS AUTISM."  My husband was at work at the time so I was alone, without support at this particular meeting.  I initially thought he needed speech therapy and continued to doubt her report.  A week later, I took him to the Regional Center where they have clinical psychologists to test children with special needs and knew a person with a Phd in psychology (remember, I was angry, in doubt, upset and extreme denial) would come to a different conclusion from the school psychologist.  Honestly, I wanted a professional to refute the findings presented to me earlier and concur with my thoughts - he only needs speech therapy.  After she tested my son, conducted a series of observations, interviewed all of us, and conducted a case study - she (who happened to be older and once again had a Phd) came to the same conclusion, "MY SON HAS AUTISM".  I was still in denial and truly enraged.  I remember looking at her, slightly raising my voice and said, "You can call it Cucamonga for all I care.  I just need your help."  Overall, at that time (it was 2003) what I was basically saying was that giving a diagnosis or an actual label was not meaningful in and of itself.  What I needed was help with my son in ways to communicate, help with managing his anger outbursts, help with controlling his behaviors, help.....help......help.

Years later, I have come to realize that a parent of a child with special needs can feel isolated, as if she or he is alone, and believe that the diagnosis is life-ending.  Although feelings of isolation are indeed real, I just wanted some form of relief and help for my son.  Help did come in the form of resources - my son received outside speech therapy once a week and they provided homework for me to do at home with my son.  My son attended a speech summer camp every summer where the focus is on speech using interactive models and interactive field trips. (There are summer camps for children with special needs)  LAUSD gave us a behavior specialist that would come to my son's pre-school every day to work on his behaviors. The Regional Center (I am with Westside Regional Center)  recommeded in-home care where a behavior specialist could come to our home to work with our son.  As a parent, I researched and practiced such skills as using a mirror so he could see the formation of his lips (to help with his speech). I taught him the correct ways to form his lips to help him pronounce his words correctly.  I had a behavior chart at home so he could see what behaviors were expected each day.  He was rewarded for the behaviors that he performed as listed on the chart (I wrote 3 to 5 behaviors - in the form of pictures orginially then in sentences.  He received a sticker for each behavior perfomed on that day.)  I began to get involved in support groups so I can increase my understanding of autism.  I also walked 3 to 5 days of the week - exercise relieves some of the stress and I needed relief.  These were some of the ways in which I received help and began turning my denial into acceptance.  I also began educating my parents, my friends and relatives so those looks of pity can now be looks of hope and understanding.  This is what worked for me.  Comment and tell us what worked for you.

Once again, this was part of how I knew and eventually how I began to gain acceptance.