Wednesday 24 April 2013

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. 

Wednesday 17 April 2013

When oh When did Cleaning with no kids home become my break

  Never a dull moment, that is how you would best describe my life.  The normal chaos of being a mother of four under six and military wife is busy enough but then add to that the chaos of two children on the spectrum and chaos turns into out right insanity.  During any given week I am busy with hours of therapy and doctors appointments, not to mention the normal everyday chaos like, laundry ( my own personal nemesis) cooking, cleaning and taking care of my family.  I don't normally complain and NEVER ask for help, that's just me and much to the dismay and disbelief from some of my mommy friends I also do not drop my children off at the drop in or take them to preschool,  not because we can not afford it, but i really really hate throwing money away on something like that if i am home my kids can be home with me and if i am going out then they come out with me and i do not even bat an eye at taking them all out with me and yes i have and do take all four of them to the grocery store by myself.

  Other moms are in shock at the fact that i am not afraid to take my kids with me out in public, to the grocery store, the fabric store or out to a restaurant and more often then not i get remarks like i would never take my kids out shopping, or my kids would never behave,  My kids are expected to act a certain way when we are out and they may not behave at home but they sure as heck do when we are out end of story!!!

   Ha right, who am I kidding my middle monster,  (I mean munchkin) spent the better part of mommy and babe boot camp screaming today, and my oldest used to cry anytime we left the house because the hum from the lights and the chaos of the people would throw him into melt down,  But seriously i can not complain because my kids actually are really well behaved and other then sensory moments they are expected to behave when we are out, and because i am the kind of mom that is always on the go and they have grown up being dragged all over the place they are used to it and for the most part they do very well when we are out and when they are in sensory overload or having a melt down we deal with it and sure for my own sanity i bribe them with timbits and m&m's, but seriously what mom doesn't and if all it takes is a few tasty treats to get my little introverts out the door then hey i say its a win win right, and sadly with my life it's not always a choice for me to leave them at home when my husband is away and we need something then out the door we go.  Besides it's good for them to learn about social situations and interactions and how to properly act in public.

Now i have a choice i had volunteered for my daughters class trip to the sugar bush tomorrow and it has since been postponed due to the possibility of bad weather tomorrow my two little boys are already registered for the drop in center and my oldest two will be at school which means that i have the opportunity to have several hours of kid free time, normally i would call and cancel but since i am trying to find me again i think i am going to take this opportunity to do just that, i am going to drink a tea while it is still hot, and clean and organize the house uninterrupted, i know what your thinking oh my god she's gone crazy stop the madness what is this crazy behaviour,  OK maybe that's what i was thinking, but cleaning uninterrupted and drinking my tea warm really does seem like a break for me, and since we don't live in the city i can't go to a movie or anything like that and apparently we are in for some yucky freezing rain a walk is out of the question so cleaning it is.

Now the tough part will be for me to relax and enjoy the quiet time without thinking of my kids every 5 minutes, one step at a time.

Thats me for today just living life one puzzle piece at a time.
J