The Agony of an Autism Diagnosis All Over Again.

April is autism month, every day is autism day in our house. It is actually kind of ironic really as 4 years ago in April our oldest son was diagnosed with Autism and seizure disorder April 14th 2009 will forever be etched in my mind as a day that I wish I could erase from history, I know that I have never actually written about how I felt when we received the diagnosis and to be honest up until recently I never really thought about it from a rational point of view that is. I reacted, I didn’t think, I allowed my emotions full out free rang over the situation, Even though my husband and I had been already talking about the scary “A” word it still did not prepare me for that dreadful day that the doctor actually said the words out loud, funny how when something is said out loud it makes it that much more real. I knew it was bad when she looked at me and handed me a box of tissue, never a good sign when you are in a doctor’s office. Surprisingly though I did not break down in the office looking back I think that my mind and body had gone numb I remember the doctor saying to me that she was certain that G had Autism, she handed me some brochures and told me that she was willing to take him on as a patient and that the seizures that had started the whole journey to this point were a secondary concern I don’t remember anything else about that meeting though I know that there was much more to it than that, I remember driving home in a daze and thinking to myself how? How could this be real, at any time I was going to wake up and this was going to all be a bad dream. I walked into the house and came face to face with my little blue eyed angel, I hugged him and then the tears started and I couldn’t stop, I couldn’t stop crying and I couldn’t stop hugging him, I looked over his head at Andrew and our eyes met, and he knew without saying a word he knew! 

The next few weeks went by in a blur when I wasn’t crying I was mad and looking back now I know that I was not a nice person to be around, I hated the world and even worse I hated all of my friends and family, I hated them and their perfect kids and their words of advice and concern, I was mean to them ignoring their calls and snapping at them when they said things that seemed stupid and redundant, I was mad at my parents and Andrew’s parents, mine because my mom and dad were overwhelming me with info and Andrew’s because it seemed like they didn’t care they just seemed to be ignoring the situation. Looking back now I realize that they too were dealing with the diagnosis in their own way, their first grandchild had just been diagnosed with autism a completely unfamiliar territory, my parents like myself research the hell out of everything and wanted to help us the best they knew how by providing support and information and Andrew’s parents had also been researching but wanted to give us some space to adjust. After the anger and tears started to disappear I went into overdrive I needed to learn everything that I could about this disorder and I needed to learn it all right away! I started to make phone calls and filled out enough paper work to give me carpal tunnel, I was going to do everything in my power to make sure that G got everything that he was entitled to and I was going to learn everything that I needed to help him, I thought that by researching the hell out of the subject I could become an expert, little did I know then that years later I would still be learning and when I think I have something figured out it goes and changes on me, such is life.

Now here we are four years later and i find myself once more crying in April, four years almost to the day to be exact,  and it has been advised that we have our third child ( who is actually the 2nd born and our only girl) assessed, a month ago our 2nd son was diagnosed, we knew it was coming we had seen the signs in him, the bouncing, no sleeping, the ears being covered, his frustration at not being able to talk at 3, but still once again actually hearing those words was like a stab to the heart.  I went into supermom mode something i have become very, very good at these last few years and rallied the troops, i called in all of my favours and used all of my contacts and resources,  I started filling out all of those forms like a pro,  i was going through the motions, albeit a little bit lost at times as both boys are so totally different from one another and it was going to be like starting fresh all over again learning how to best work with Ben and figuring out what triggered his meltdowns and how to best calm him.  So after a month of dealing with that and starting to get things into place i was feeling better, more sure of life and more able to deal with the issues that were being thrown at me on a daily basis.  Then last week i went to the school to pick up the kids and was hit by a left hook i had never seen coming, and it sent my head spinning, the term's  ADD, OCD, Autism were being thrown around to describe my daughter my beautiful wonderful baby girl and the spitting image of myself in both looks and temperament, this could not be happening, not again they were mistaken.  I left the school mad, mad that they had the nerve to say she might be on the spectrum and mad that this was the first i had heard about it,  and madder still at myself thinking that i had somehow let her down by being so absorbed with the boys that i had somehow missed something.  I have since talked to 3 different experts in this field and 2 of them strongly recommended that she be assessed reassuring me that i did not miss something but that girls present differently then boys and that it can sometimes be hard to see the signs.  We do not know for sure if she is on the spectrum but she is exhibiting signs, so to be on the safe side she to will be assessed.  

So here I sit going through the same emotions and feelings I felt on that life changing day 4 years ago, I have been mad, felt denial and cried until my head hurt, i have hugged my little girl and looked into her eyes to see that no matter what she is and always will be my beautiful baby. 

So here i sit just trying to live life one puzzle piece and one diagnosis at a time. 

J