Tuesday, July 29, 2014

Life is a bowl of fucking cherries

People say " oh isn't your life hard, isn't your life so fucking hard." Meaning that we get things. For example while at the hospital we get a "vacation", with trips to the zoo and tickets to Disney on ice. I ask would you survive, even just a day in my shoes, or the shoes of any special needs parents. I very much doubt it. A basic run down of my day.
3:30 am: check on Toots because I.   know he was seizing, you just learn what it sounds like.
5:30am: lying in bed still awake. Because Toots is now in my bed having multiple myocalonic seizures a minute.
7:30 : get up because Turk is now up, and with out his meds he starts doing crazy things, and ingesting everything in site.
7:45: try my damedest to get everyone dressed, med doses fig, and some sort of plan for lunch because I am always broke so we can't eat out.
8:15: get everyone In their carseat, clothes and shoes are a must today.
8:20 drive for the next 45 min listening to frozen on repeat, and constant yelling and ticcing because meds have not kicked in yet.
9:00 am: sit for 1 1/2 hours while Toots is in therapy.
10:30 move to another building for another 30-40 min of speech therapy.
11:30: go to clinic for a med follow up.
12:30 take my little lunch we packed and hit the park for a bit.
3:00pm: go to get Toots fitted for new afos.
4:00 pm: head home another 45 min drive.
5:00 cook supper even though I know no one will eat it.
6:00 pm : sit for a min.
6:30 get boys in big white wet chamber of awful (bath)
7:00 pm: still fighting to get kids scrubbed.
7:30 give night meds, and jammies on.
8:00 to bed I said.
You would think at this point things would calm down... but you are wrong. Still at midnight I am up listening to to Toots cough, wondering if tomorrow will be different. Maybe something fun, a normal life...
But I know, it start all over again just the same as the day before

So guess what you are right!! My life is a bowl of fucking cherries. The sweet kind that come with kisses, and bed time prayers, love, and most of all hope.

WE LIVE FOR HOPE!!!

GOD BLESS

Tuesday, July 8, 2014

Peace.... ha. Autisum at it's finest.

I put the boys to bed, or so I thought. I jumped in the shower thinking it was seemingly safe. But... It was not. There was a thud. Pat pat pat ta pat pat of little bare feet. I was trying, to shave a luxury unbeknownst to me. Using my son's fake TMNT shaving cream because I had none of my own. There was no "mommy" ... crap. This means one of two things, Toots got back in bed, or he is doing something he shouldn't. The latter of the two is how this story ends, but I thought. I should be safe. When I do get out, there is Toots sitting in all his naked glory, eating chips. " mommy I is wet, change mines pull up" oh what joy. Just so you know he is back in bed and clothed.

An introduction of sorts

I am a 30 something, stay at home single mom. I know right, not words you here to often in the same sentence. Let me explain. I have to wonderful handsome young boys. Turk (not his real name)is 7,  and Toots is 3 (also not his real name). Turk and Toots are both special needs ( handicapped, disabled how ever you like to put it). Turk has aspergers syndrome, touretts syndrome, adhd ( attention deficit hyperactivity disorder), dd (disruptive disorder), anxiety, social depression, ocd (obsessive compulsive disorder, sever food allergies, ftt ( failure to thrive), asthma, seasonal allergies, and last but not lest spd ( sensory processing disorder.
     Toots is a whole nother ball game. He has a genetic disorder called 15q11.2 micro deletion syndrome. With this he has many many dx, including birth defects, medical issues, behavioural issues, it go's on and on. If you are interested in a list just ask.
     We live in very small means, but it works. I tried the working thing. Employers dint understand needing to miss work due to this appointment or that therapy, let alone weeks off for surgeries or procedures. They don't understand daycare calling needing you now because your kid vomited everywhere, or is sizing. Oh and do not get me started on daycare, ha that is a joke in itself. So I stay home. My youngest gets ssi, and they both get child support. We make due. I will post more latter.