Friday, August 3, 2012

Welcome to my world

Hi everyone!

First & foremost, I want to welcome you to my insane world! My world of being a wife, a mother to an autistic child, a stay at home mom, a work from home mom, an owner of 2 home based businesses & oh yeah, a woman!

Most people say that being a stay at home mom is easy work. That's your personal opinion & you are entitled to that. Having worked both from home, and outside the house, owning my own businesses, working for big corporations & small self own restaurants & even worked YEARS as part owner of a construction business where we did everything from painting, drywall, tiling, wallpaper, concrete, gardening, wood working, building buildings and cabnetry, installing windows, doors and everything in between, to name a few types of businesses, I know the ins and outs of businesses. I know how hard those jobs can be! I managed a restaurant for over 2 years, where the owner knew NOTHING about ANYTHING related to the business. No joke! He couldn't do the paper work, banking, budgeting, ordering, shopping, anything! But he could cook like you could only imagine! Amazing food! We were mainly a truck stop/factory stop but he had a few uncommon items on his menu & then their was the Sir Lankan food that he would prepare for us! AMAZING!

I have to say though, with ALL the jobs I have had and all the different areas I have worked, I have to say, being a stay at home mom has been BY FAR the HARDEST JOB EVER!

I'm mom to 1 beautiful, sweet little Princess who we call Princess A. She's 5 years old, energetic, fun loving, dedicated, determined, caring, support (among many other wonderful traits), AUTISTIC little girl! On June 11th of this year, I was 28 weeks pregnant, exactly, with my identical twin girls Addisyn & Analeigh. They sadly, were both born sleeping. I have a wonderful & loving husband J! We have 2 cats! That's my immediate family living under my roof!

Princess A is your typical 5 year old, just finished JK, loves doing fun things, is super talented in dance, arts, music & other areas of her life. She's been doing gymnastics since 4 months old & is good enough to go professional and compete with kids twice her age! She LOVES ballet! She's also a big soccer fan & swim fan (those two are as recent as this summer! Soccer from June to August 2nd and swim has been going on all summer but just in the last two weeks has she started to enjoy takes private lessons but it really has helped her).

I'm the type of mom, where my kid comes before ALL else! Literally, nothing comes before her, if I can honestly help it! My daughter is my world! She's more then a full time job, some days I am at my wits end before its even "wake up" time and some days I want to rip my hair out. Some days I want to give up, some days I see that smile and no matter HOW bad a day its been, she makes it ALL worth it!

My daughter has had her diagnoses made, taken away, made again and taken away AGAIN! Currently it's "taken away" & I am awaiting an appointment time with a new OT and therapist. Many people say that because the diagnoses has been taken away, that means she NOT Autistic. That's like saying because someone doesn't always carry their epipen, they don't have allergies! Sorry, in both cases I think its crap! My daughter is autistic and she's got a mile and a half long list of allergies! But back to the autism!

For 5 years, I have been fighting with doctors, OT's, therapists, specialist and more people, to get her the help she needs! Each time I think I am making progress, bam, I get rejected again! My daughter shows ALL the signs of autism, as well as SEVERE sensory issues (and I mean so severe that she can't do normal things like wear clothes unless 100% necessary), can't shower, can't use anything but a special homemade soap that is made in Florida and shipped up to us. She can't play like an average child, she doesn't learn like an average child, she can't write properly (doesn't help that she's also dyslexic). She has a great deal of trouble communicating! She had AMAZING speech till 20 months old, when LITERALLY over night, she STOPPED talking! At about 4.5 years old, speech slowly started to come back, at 5 years 2 months she's still not nearly up to par but with all the hard work I put in, she's making progress.

All her "therapy" is done by me! ALL OF IT! All the expenses are out of my pocket, meaning we incur debt, we can't afford the basics in life, we can't LIVE a REGULAR life, like an average person! I have to make EVERY SINGLE SOLITARY FOOD FROM SCRATCH! All the cooking and baking! NOTHING can be prepacked! It's a VERY time consuming process for me!

Between the costs financially & the costs time wise, my life is totally, completely, 100% in total chaos 24/7! And I do mean 24/7!!! I'm LUCKY if we get 2-3 hours of sleep TOTAL in a 24 hour period! No she doesn't nap but she doesn't really sleep either! Which means, because J works shift work, its all on mama to deal with it! I am stressed beyond belief and I am stretched to the core. My last nerve snapped years ago!

This is the story of our lives, our journeys and our sanity (or maybe our lack of sanity). Join us! But hold on tight, you're in for a bumpy ride!

No comments:

Post a Comment