.perception

Over the short course of my starting and writing this blog, I have been both put down and praised for it.  I have been accused of being a whiny brat & tit bag and a person only writing to get attention and “likes” because it makes me feel better.  I have also been praised and thanked for being so open and honest about my life and the realness of being a special needs mom.  I guess it goes with the territory and is all in one’s perception.

The truth of the matter is that I can be a whiny brat at times, I think as parents, most of us can be.  I can also attest that hearing from others of you that are on this journey too does in part help me and make me feel better.  What’s so wrong with that? This life is hard.  Being a parent is hard.  Being a special needs parent is super hard, but we do it because we love our children.  We do it because we chose to bring these little humans into the world and regardless of the longness of the days or hardship of being a parent 24/7 & 365 may bring, for must of us it is our greatest accomplishment. One thing was said to or about me this past week that I want to clear up.  I honestly can’t remember the exact words, but the gist of the comment was that I didn’t love or want my child.  That is the absolute furthest thing from the truth and one of the most hurtful things that has ever been said to or about me.  I love my child with every fiber of my being and would give up my own life for her.  She is the light and joy of my life despite the hard days and sometimes long nights.  I want to make something perfectly clear about this blog and my writing.  I write for me and because it is an outlet for me.  An outlet for my joy, my frustrations, my elation, my anger, and my feelings. It is my therapy. Do I hope to help others along the way, most definitely.  From some of the emails and comments I have already gotten, this blog has done just that even in a small way. I also want to say that if you don’t have a special needs child, then you can shut the fuck up with your opinions and keep them to yourself.  I mean HAVE a special needs child.  Not have a friend or family member that has one, I mean you yourself have given birth to or are the parent/guardian of one of our precious and special kiddos.  Those outside of our way of life have absolutely no idea what it takes to raise these remarkable little humans.  We are always on guard and our children are NEVER out of our minds.  We don’t get days or nights or weekends off.  Even if we are lucky enough to have another caregiver in the form of a grandparent/family member or nanny/sitter, we are still always on guard and on point.  While we may get a physical break every blue moon, we NEVER get a mental one and it is exhausting.  The kind of exhaustion that can not be explained unless you have lived it.  To say or even hint at the fact that because I am open and honest with my feelings and my particular way of life means that I love my child any less, do not want my child, or that I am just writing to be whiny and a brat is beyond insulting.  Especially when it comes from someone or anyone who has no idea about this way of life.  So let me tell some more about this way of life, my way of life.

I love my daughter more than any words can ever describe.  She is my everything and the joy and light of my life.  She is also hard and on the move every second of every day.  She rarely sits down or calms down unless she is medicated to help her sleep.  She is 5 years old with the mindset of a 3 year old and we don’t know how far she will progress. Most parents get a few months to maybe a year of the terrible twos or the tyrant 3’s.. we’ve had YEARS of it with no end in sight.  Imagine your child asking ALL DAY EVERY DAY to see her Guppy or PopPop or Paw Nick or Elijah or Nana or Grandma and you not being able to explain to her why she can’t see them.  I’m not talking about a few times a day, I am talking about almost every waking moment of the day.  Imagine your child hitting, kicking, and screaming at you because she is mad and frustrated because she can’t communicate what she needs.   imagine that she can communicate what she needs or wants like her Guppy or PopPop or chocolate or chips but that she can’t have them and she doesn’t understand why.  Imagine not being able to have a conversation with your 5 almost 6 year old child.  It is heartbreaking. I have to be “on point” at every moment of every day.  I have to be a parent, friend & teacher and sometimes I don’t have the energy to be all of those things all of the time. We “play” all day every day in one form or another.  I can’t sit on my phone while my child plays at the playground or in the sandbox.  I am up playing with her, climbing up the stairs or holding her on the monkey bars or pushing her on the swings and getting covered in sand from the sandbox.  I have no time to just sit and relax while my child enjoys playing with other kids her age. Imagine your baby not having any friends.  I mean NONE other than you and her other family members.  She doesn’t understand how to play and other children don’t understand her so she is never invited to come over and play or swim or go to the playground or the park.  She can’t play t-ball or soccer or dance.  She can’t go to day camp or VBS because they don’t have the one on one supervision that she needs. Imagine being EVERYTHING to your child and living with the fear of what happens when you are no longer alive to be that everything.  Imagine your 5 almost 6 year old not being potty trained yet. Imagine having to clean up poop covered hands 2 or 3 times a day because your child is obsessed with sticking her hands in her diaper and playing with her poop. That’s right.. playing with her shit.  It gets everywhere.. on the walls, on her, on her bed, on me.  It is disgusting, and it happens in the blink of an eye.  “oh, well why aren’t you watching her?”  Well because maybe i’m cleaning the house or maybe i’m trying to cook dinner, or maybe i’m trying to fold laundry or maybe i’m trying to sit down for 5 minutes of the day.  My point being that unless you know our way of life, you do not have room to judge.  Honestly, even if you do know our way of life, you still have no room to judge.  In my humble opinion there is entirely too much judgement and not nearly enough understanding in this world.  We should be helping each other up not pulling each other down.  This life and parenthood is an incredible roller coaster, so why don’t we grab hands and help each other enjoy the ride.

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