Being a Not So Special Needs Mother IS My Career

    It was brought to my attention yesterday that recently someone in my family (by blood, not by choice of course,) informed my mother that, "well at least my children have careers to be proud of."

    To say I was immediately infuriated was an understatement. 

    My voice went from normal to "Get the demon out of her!" in a matter of seconds. Seriously, my husband said he was waiting for my head to start spinning on my shoulders.

Wait a frigging minute!

    I'm not knocking anyone for their careers or lack thereof, but in my humble opinion, a career does NOT define us. I don't care if you're the most gifted neurosurgeon on the planet, you can still be an a$$hole, and that isn't something to be proud of.

   Truth is, I used to have a career. I self taught myself to tattoo and worked in not just one, but TWO shops in busy cities. I was in a tv commercial (it was so embarrassing,) and constantly booked. I also made DAMN good money! Then I became pregnant. I was high risk and immediately put on bed rest.

Bye bye career!

    I didn't care. The miracle inside of me was more important than a career. Fast forward a few years. When Liam was just five, and getting ready to start school, I decided I needed to find myself and start tattooing again. The guy took one look at my portfolio and hired me on the spot. Just days before I was to start working, Liam was diagnosed as Autistic.

    With a heavy heart, I contacted the gentleman and declined the job offer. Our world was spinning, much like our little boy. I started veraciously reading every book on Autism that I could get my hands on. I became a Parent to Parent of Pennsylvania Peer Mentor, to support and walk other parents through the diagnosis process. Eventually, I started a blog to educate others who were in the same boat as us.

    That flourished into a Facebook page. From there, a local support group. I organized the first ever autism walk in our town, got our local theaters to host sensory friendly movies, did Christmas parties with sensory santas, decorated the town for Autism, had a party to educate neighbor kids about autism, (our local news station actually came to it and did a story on Liam,) and so much more.

    I've grown into a better writer. I've been featured in Autism Parenting Magazine. I was published on Yahoo Parenting, (which was such an honor.) I have been featured several times on The Mighty, Sandwiches and Psych Meds, BlogHer, and more. Liam and I made the cover of Parenting Special Needs magazine. And Liam did two campaigns with Paper Clouds Apparel, to raise money for Autism charities.

    So no, as this person stated to my mother, I don't have a career per say. But guess what? In five short years I've educated and helped more people than I can even count. More people than she could ever fathom.

You know what, I'm proud of that!

    I'm lucky to be able to stay home and care for my miracle child. To be able to home school him, help him with therapy, be there for other families that walk a similar journey, and juggle a few writing jobs here and there.  I'm also proud that unlike that person, I'm not an a$$hole. I'm also not perfect, nor special, but I try damn hard to help anyone that may need a shoulder to cry on, or an ear to listen.

    I have made some amazing friends thanks to this journey. Friends that I CHOOSE as my family. I don't need people like her in my life, and I don't need a "title" to have a purpose. My purpose is here, and I'm okay with that.

   

We don't get sick days

    When you are looking for a new job, one of the things all people consider is the amount of vacation days, personal days or sick days that are available to them. However, when I was expecting my son, no one gave me an outline of what to expect. What benefits were available. No one said vacations will never happen. Personal days, let alone personal time to take a pee would be a joke. And sick days? Mom didn't tell me I wouldn't get sick days!

    Add special needs to the mix. Even if you CAN sneak away for a minute to use the bathroom, the entire time you're sitting there, you're wondering what your precious angel is getting into. Rare occasions when your angel is sleeping and you try to take a quick shower, you wonder the entire time if angel will hear you, wake up and get into something. Or worse yet, try to unlock the door to go for a walk alone. How about vacation? IF you can afford this luxury, it's not really a vacation. Let's face it, a new place offers new worries. The unknown is uncool for our kiddos and for us. So now we must pack for every what if, because we need to be prepared.

 



We took a vacation this year. This was JUST Liam's stuff (and not counting all his foods or the all the beach stuff we packed for him)











     Now add chronic illness to this mix. (I have many, but let's just use fibromyalgia) There are days I can't move. Well okay, I can, but to do so causes excruciating pain. So I don't want to. I don't get a sick day. I can't look at my son and say, "Mama can't do that today buddy." Nope. No way. No how. I must persevere. I must ignore that I feel like I was hit by a truck. I must hide my pain face. (You know, those experts that say our kids aren't empathetic? Well, we all know how wrong they are.) My son can't see me in pain or he will break down. He will then perseverate on me and if I will be okay. So you brush away the tears. You bite back the pain, and you deal.

    As a matter of fact, I have been in a flare for 3 days now (if you could see my house, you would be appalled.) Anyway, I have been keeping him occupied with his lessons, board games, video games, etc. I play with him from my chair. He kept asking to carve one of his pumpkins. How could I refuse? So while all I wanted to do was lie in bed with a heating pad and take a nap, instead I gutted a pumpkin (He doesn't do pumpkin guts. Sensory yuck for him) and sat with him on the floor while he carved it.



So I guess what I'm getting is, when I was "preparing" for this gig as a parent, there were MANY things I didn't consider. Many things I wish I would have asked about. Special needs parenting wasn't even on my radar, so that blew me away. Regardless, I wouldn't trade this "job" for the world. I don't get many vacations. I don't get personal days. I don't get sick days. What I do get is unconditional love. I get to make a difference in the life of a child, and that's enough for me.