Today I Pledge....Patience.

Today is a day where I ask my friends to take a pledge every year. To spread the word to end the (R) word.  And while it's a absolutely hands down worthy cause, the truth is my mind is focused slightly above my little precious Eddie.  Today I am also taking another type of pledge, one to myself and to my oldest son.  Instead of focusing on Eddie today, today the focus is on his big brother, my sweet, sensitive, loving, wise, intuitive and amazing oldest child.  I often say to people, jokingly, that Dominick is my true "special needs" son.  And people usually giggle as I try my hardest to describe in few, short words just how trying it is to be this boy's mama.  Dominick from before he was a year old has been able to perform tasks way beyond his years, well year in this case.  He has always had an absolutely amazing and awe inspiring capability to learn new things.  He knew all his letters, their sounds, how to identify them in sentences, all before turning 1.  He always just got stuff.  He made my job as his first teacher a breeze and an absolute privilege.  His intelligence is a wonderment to me to this day.  That aside, there is so much more to Dominick's brain function than just his intellect.  I learned when he just turned 3 that he was so smart that his brain was working way too fast for his speech.  This caused serious and almost devastating meltdowns and tantrums.  He was almost 3, barely able to form a sentence and repeating the few words he did know over and over and over and over and OVER.  For sometimes 40 minutes at a time.  I tried everything.  Distracting was just not an option.  Bribery was pointless.  Hugging and affection did nothing.  I was lost.  On top of the meltdowns there was, and still is, the defiance.  If I say go, he will stop.  If I say yes, then no it is.  This is down to the minute details in our every day life.  "Dominick would you like a waffle" Even tho this is his favorite food, he will say no just to oppose me.  Every day, all day.  I was drained.  I was beat.  I was defeated.  I was alone. At the time all of these behavior started I had just had Eddie, and for those who don't know, that is his little brother who was born with Down syndrom.  My husband worked the graveyard shift and the days he was off, he was a zombie.  The age 2-3 for Dominick was one of the absoulte hardest years of my life.  The tantrums, the defiance, the meltdowns were NOT typical 2 year old behaviors, I knew this. The meltdowns that include constant looping of one phrase ("I open the door, I open the door, I open the door" when I would open the fridge or the front door or the car door, or tried to do anything really) is what prompted me to get him tested, fearing he had some kind of OCD or Oppositional Defiance. I took him to be tested and was floored by how much he knew, he was given a very abstact matching test and got every single one correct.  I had to ask the teacher if he was correct every time because I had no idea what they were asking.  He did, instantly placing the little cards with the correct abstract image.  After two series of test, I was brought into the psychologists office, heart in throat and sweat in hands.
 She said "Well, Mrs. Petraglia, it turns out all of Dominick's behavior issues stem from him being extremely intelligent and unable to express himself.  He also needs to control things, a common bi product of highly intelligent children.  I suggest you put him in music lessons, guitar, violin, piano..anything, and I believe he will flourish and this will give him the outlet he needs and something that is his, that he can control."
Sounded like a plan! Wow, ok, so he's super smart!? Like, officially!? This is amazing! My frustrations were quickly masked by pride and joy in my smart little boy.  Music lessons, STAT,,,,,Except he was 3 and nobody would give him private lessons.  Group music therapy type lessons offered no help, while they were fun in their own right, they were not tapping into that area of his brain that needed it.  So, I put it aside.  I had an answer, and that was good enough for me.

Until it wasn't anymore.  His behaviors were not subsiding and new behaviors were adding themselves to the itinerary.  We learned when he started preschool, not long after his testing, that he does NOT do well with changing of routines.  That paired with normal separation anxiety being away from me for the first time ever...well, the first few days were so horrible, I still cry thinking about it.  Once Dominick started preschool I learned two things.  First, he is not the typical. happy go lucky, run and play 3 year old.  He will study his surroundings and observe quietly and have no desire to "go play" with other kids.  This has followed him to every new teacher, classroom and school over the past 3 years.  Every time we change his setting, teacher, classroom or school it causes overwhelming emotion and anxiety for him.  How these present themselves is through behavior.  And even tho my brain knows the triggers, it's never an easy process.  He will become 1,000 X's more defiant and ornery.  I will last a good few days knowing in my heart why he is acting out.  Yet, after a few days I just lose it.  I lose it.  Plain and simple.  There is only so many times I can get opposition from him before I just want to scream.

Another way his intelligence and heightened awareness of all things around and within him presents is through his sleep.  We have had sleep "issues' since he turned 2.  He stopped napping completely at this age.  The older he got the worse the issues became.  The issues morphed so many times until finally settling on one common theme.  Fear. Overwhelming fear.  Fear of everything and nothing all at the same time.  We have now finally found a routine that helps with his fears at night, but over the past year or more I have noticed that this fear is now effecting his day job! He is afraid of any empty room, day or night, sun up or sun down.  He cannot be alone for even one moment, anywhere.  When he was smaller and still to this day, he cannot play a game or do any activity alone.  If he is doing a solo activity, he is giving me a constant, and I mean CONSTANT commentary.  Every thought expressed, every decision shared.

I know all these things are part of what make Dominick so special and unique. I know that.  but, as a mother of two kids.  Both with special needs, I am so tired.  I feel smothered and overwhelmed.  I feel like I have lost every single part of me.  Admitting that those things make me sad is a very humiliating feeling. I have become a fly off the handle mom, with yelling the go to way to express my anger and stress.  I don't recognize myself anymore.  Not only as a Mother, but as a person.  Who am I? I have never lost my patience the way I do now, in my life.  And patience is one of the things that made me me.  I never lost my temper or yelled, yet these days it's what I do best.

 Every mom wants to give up and WILL give up everything for her children.  The reality of that, however can make you feel like you're sinking in an ocean and nobody is there to save you.  I live in constant struggle to be the mother I have always dreamed of being.  Smart, funny, loving and above all - patient.  Yet, lately, patience has been outside our front door just waiting to be let in.  Only I can open that door.  She will be a welcomed guest.  Yet, just like with friends, I don't always invite people over because the laundry is piled over or the dishes are smelly in the sink, or the toys are everywhere and I haven't mopped for weeks.  I think it is time to treat patience as I would my best friend.  The friend who doesn't care about your dirty laundry and disgusting house, the friend that will be there for you through thick and thin.  That is patience.  I am ready today to unlock that door, to take that pledge and to show all of the ugliness that it takes to be a Mother, to let that welcomed friend it and allow her to put her arms around me and forgive me for letting her wait outside in the cold for so long.