As I look back 2011 was yet again for me a tough year, although it was in no way as bad as 2010 the official year of suck.  Ryan has had what seems like twenty evaluations and countless appointments. This school year has been, as you all know, hard on all of us.  The time and attention that it takes for Ryan to get his work done could destroy our family.  We don’t let it and we muscle onwards, even when we don’t want to write or read one last thing.  Our quest for TSS services is still alive this year and it counts 18 months since we initiated the process to procure help.  We have another meeting with the results of the Functional Behavioral Analysis on January 27th.  I think many of the evaluators, case managers, and doctors we have seen are in agreement that it is needed.  The amount of TSS hours and convincing the grand boobah of TSS that it would help Ryan function better is what is left.  We have dotted all our i’s and crossed all our t’s in the information that was submitted, and they are asking for more

Aaron is ending 2011 with a bang.  He is a model kindergarten citizen.  He leads the class with how many books he has read.  Some night’s he brings home as many as 10 books to read.  He is voracious and so much like I was as a kid.   I feel so fortunate to have this neurotypical experience with him.  It is so different and yet in the end the joys and sorrows are the same.  He had a good year.  Only one accidental exposure to a food and we never needed to use his life saving epi pens.  That is a win.

We are doing nothing for New Years Eve.  My nephew and his girlfriend were here last night and this morning.  She is working on going to Physician Assistant school.  She has to volunteer in a hospital for 400 hours as part of her acceptance.  She got a horrible stomach virus after getting run down working and volunteering and woke up very sick this morning.  She hasn’t been able to keep liquids down and she is in the emergency room getting IV fluids.  My husband had the same vomiting thing but he seems to be turning the corner.  Our washer broke last night so with my nephew”s help I went to the laundry mat.  It would of been nice to go with Cecily, Charlie, and Tori to the fireworks and dinner but  there was just no way.  Even my kids are still in their PJ’s never even asking to go out to play today.  It is as if the year has drained us all and we need to recharge. Tomorrow I work and it is the craziest day of the year for my bar because of the annual Mummers parade that passes less than a block from my bar.

I have hopes and dreams for 2012.  I hope to get more work doing my jack of all trades/social media helper gig.  I love it and I hope I can get busy enough that I will forever be done working weekends in a bar and never having to choose time with my family over sleep.  I hope we get Ryan’s Pervasive Developmental Disorder diagnosis finished and we qualify for more services to help him socially. I hope he remains seizure free.  I hope again this year we never have to use Aaron’s epi pen and at his egg challenge on April 15th we discover he has indeed out grown his allergy to egg, shortening our allergen list and opening up his food choices a little.  I hope my husband continues to be challenged at his job but works less hours this year and closer to home.  I hope we all remain as happy as we are today.

I want to blog daily again.  I am going to give it a shot. Come and root me on.   I hope 2012 finds everyone who reads this happiness and success in the New Year and is surrounded with as much love as I am.

Since late August, besides the bar, I have been working for Seer Interactive.  They are a SEO company and they hired me to do project work for them.  The deadlines are ridiculously easy to meet,  the work can be boring, but it also has some awesome bright spots to it as well.  It’s a start working in SEO.  I have learned a ton.  I never ever have to go to the office.  I work.  I submit the hours and the checks magically arrive at my house in the mail. I have one or two 10 minute meetings a month on the phone.  I have gotten a routine down, what they want me to do every month I can finish in a few days. Often they hand me extra work.  I got the job through Cecily of Uppercase Woman, who I have considered a friend since the early 90′s, and her husband Charlie and I have been friends since the 80′s.  I served them as alcoholics, watched them get sober, they supported my band many a evening, and we luckily wound up with children of similar ages.  To me, they are the extended family we don’t have and I know we are that for them as well.

I am a faithful reader of Cecily’s blog.  Before she had a blog she had a regular email that she sent to her closest friends detailing the start of their journey into infertility treatments.  This email morphed into her blog.  The past number of years I have watched her literally almost lose everything in pursuit of becoming a writer and an internet personality.  I had to support her.  I did the same thing she did in my pursuit of the rock and roll dream.  I worked literally night and day for my band.   She has been kicking down doors with her ferocity for years.  We have joked often that if things went well for her she’d hire me.

I am very proud to announce that Cecily hired me!  I have been working with her for a couple of weeks.  I am using my special needs mom/band tour booking organizational skills to help her.  I am fixing her blog because her migration from type pad to wordpress was ugly and her archived pictures are gone.  I see my role with her growing and I am MEGA excited.  Everyday I work for her I feel like I doing something super cool, even if fixing her blog can make my hand hurt from mousing too much and cause me to have dreams about her life.  She is discussing what I am doing for her with other people who work on the internet and getting people interested in my special skill set of failed rock and roll star, IT professional, scientist,  and bartender.  I know there will be growing pains but I have a great feeling about it.  We are friends and I know business and pleasure should not mix, but I think this can work.  She needs someone to do this work that she can trust implicitly.  I am super trust worthy.  I want to make sure to keep work at work and friend time separate.

With all these changes, I actually worked full time hours this week between Cecily, Seer, and the bar.  I have not worked full time since I quit the lawfirm in 2006, when Ryan was asked not to return to daycare at the tender age of two and Aaron was six months old.  I feel so incredibly fortunate.  I worked full time this week but I dropped my kids at school, I cooked dinner while I worked, still did laundry, I picked my kids up at school, did homework with them, and took them to swim team.  I wound up working to 9 or 10pm each night after the kids went to bed, but that’s what you get when you have such crazy flexibility.

There is a ton in my life that is not great.  Ryan, and his mountain of diagnosis’ has progressively gotten harder over the years.  My husband works way too much and too many hours.  For a married partner, I parent alone more than is comfortable but suddenly something for me has fallen in my lap and I am so happy about it.

My perfect work life, I would work from home and parent Monday, Tuesday, Wednesday, and Thursday mornings.  I would bartend Thursday night, soaking up all the interpersonal interaction it brings.  Friday’s would be, as they are now, “Mom’s Day Off” to sleep, and I would give bartending up on the weekends so that I could go to swim meets, do things around the house, go out, see friends, and hang with my husband.  Actually, I am stating now my New Years Resolution for 2012 is to find enough steady flexible work so that I never have to work weekends at the bar again.

In these tough economic times, I am just so lucky to have so many options.  If I was a girly girl I would squeeeee.

The Philadelphia School District is in dire straights.  There was a news article yesterday about firing many school nurses.  Not having a nurse at the school scares me.  What if Aaron has a severe allergic reaction and no one recognizes his symptoms?  What if Ryan has a seizure lasting more than five minutes, who will administer Dizepam?  I was told that only a nurse could hold and administer his Dizepam because it contains a controlled substance.  What about all the hundreds or thousands of medically fragile kids who want to go to school, who may need to be tube fed or given medications or treatments in school?

Then I am hearing rumblings that the school had to cut it’s budget further.  I hear rumblings that of the four lunchroom workers we will be down two.  One to serve the food, one to look after the kids.  She cannot be everywhere at once.  If more than one kid gets hurt, misbehaves, needs help, or anything else it better be one student at a time.  I hear our school is out of paper for the school year already.  FOR THE YEAR…..It is only December.

Luckily we have a very active parent base in our school.  Parents are talking on the school’s Facebook page about how to take donations to help out.  They are considering a Pay Pal button on the schools Home and School Association’s website for donations and are going to have a “Paper Drive”, the class who brings in the most computer paper will win a pizza party.  I see many parent volunteers at school all day long when I am in and out.

I can’t help but think what about the schools that don’t have such an active parent base.  How can you educate kids and make sure they are safe on a shoe string budget?  I think in this season of giving I am going to buy cases of paper and deliver paper not to just our school, but also to a school where the families may not have the resources to have a paper drive.  I have to help somehow.

I am a dedicated urban dweller but the state of the schools is getting worse and worse.  It scares me.