Ryan’s team assembled.  Dr S. psychologist, KC his in school therapist, J who performed the functional behavioral analysis and is seeing Ryan twice a week, M Ryan’s case manager, along with Ryan and I sat down.  We are being denied TSS by the grand poobah, Community Behavioral Health.  I think the CBH people wish I would shut up and go away, but after investing over a year pursuing this, I am here to fight.  The Dr is putting together a new report with Ryan’s recent behavior charts from school, letters from his first and second grade teachers, the results of the functional behavioral analysis, the results from the autism tests they have given the teacher and myself to fill out repeatedly, and the fact that CHOP is going to evaluate us in April for a PDD diagnosis.  We have repeatedly said in the mountains of paperwork that Ryan is not a candidate for ADHD medication right now because he is off epilepsy meds and the ADHD meds lower the seizure threshold. The consensus in the room is that Ryan needs TSS.  She is a strong advocate for Ryan and feels he is a candidate for TSS.  She wants to do everything she can to help us get what we need for him. If they come back with another no the team is going to help me file an appeal.

Last night as I was full of anxiety about the issue, my husband said the best thing he could say to me.  He said, “We fought this hard for all these years, this is just another hoop to jump through although it has been the biggest to date.  You walk in and if they deny him, we put on the fighting gloves, and keep making the phone calls and filling out forms till we get the help Ryan needs. Till then he is not in danger and we do the best we can.”  I knew I married him for a reason.

I am trying really hard not to give in to the frustration and give up hope.

I worked last night, so I needed to get some sleep today.  After the third phone call waking me up to talk about Ryan and the grand poobah, I was thinking that there was no way I could stay up till 3am again before going to this meeting.  One of Ryan’s therapists came to the house today to discuss tomorrow and talk about the points that need to be mentioned in the meeting.  Now I feel extra ready and extra anxious.

I am over tired and feeling quite tender so I am going to bed.  Wish us luck that the grand poobah sees to it that Ryan gets what he needs to be the best Ryan he can be.

I’m worried.  I read posts like this and I relate to it more than I wish I did.  I never want Aaron to feel like he gets less of me because he is neurotypical but at times that’s hard.  We  spend as much as 18 t0 20 hours a week doing homework with Ryan.  Most of that time is on the weekend. When Ryan is studying or doing more homework during the week Aaron usually has his homework done in minutes. I sit Aaron next to me with an activity book or scissors and paper.  I try to regularly stop, caress his arm, and thank him for letting us get Ryan’s work done.  On the weekend sometime I leave Ryan home with my husband to complete the homework and Aaron and I go off together alone.  If I stay with Ryan to study, my husband does something with Aaron.  Even though I try I worry.  The expectations for Aaron are different.  He at 6 has more self control that Ryan has at 8 1/2.  Aaron is way more interested in helping with family life.  I just hope he knows I am doing my best for him with the space and time I have.  I never want him to feel ignored.

I picked up the boys from school and performed the normal homework, dinner, get ready for activities routine.  As I am ready to shut my computer down, I get an email from a client.  Could I write two short articles tonight?  I immediately say yes, with dollar signs glistening in my eyes.  I walk a mile and a bit to karate with the boys and they have their class, then we walk a mile and a bit or so home.  After a delicious stop for the boys at 7-11, they were begging to sleep as they arrived home.  Thank you, exercise.

I wrote my guest blog posts, and now I write this.  The funny thing is my posts were all about exercise and nutrition.  Who would ever think I would use that useless Kinesiology degree to write guest blog posts?

Tomorrow I am going to exercise with the people I work with and barely see, and then a meeting.  A meeting! With people! What a novel idea!   I will then rush home to nap and turn myself into a nightwalker for two days.  Friday is the big TSS meeting. If I don’t get enough sleep, which I won’t, I wind up sobbing at these meetings.  How embarrassing!

Friday night hanging with my sweetie can’t come soon enough!

I placed a call to get my tarot reading.  I was given the choice to listen to an introduction of each psychic available.  I found myself hitting next, next, next.  One seemed too out there for me to be comfortable, the next too weird, the next even more out there.  Then I heard Sedona.  I instantly liked her voice.  She seemed straightforward and to the point.  I picked her.  I am so glad I did.

She had a great way about her on the phone.  You could tell she loved people and their stories. She asked my birth date and did a combination of astrology reading and tarot cards.  Her first words were about Uranus in the 4th house, whatever that means.  She said I was going through a grand reinvention of my entire life especially I was changing the way I made money.  She was 100% right about that.   Pluto was supposed to be propelling me to have fresh ideas and I was breaking down things and building them anew.  She mentioned to me that I should not let people influence me on my new venture and that I  shouldn’t let lack of support or competition slow me down because I had unique skills to offer.    Then she told me that a male was going to enter my life as a mentor.  He had valuable information for me and that I would not want to listen to him because he suffered great personal lost, but I should listen anyway.

She said in my house of family I sometimes had an excess of what I could handle, to which I replied yeah, tell me what I don’t know.  I had a child that is fighting, who is afraid to be vulnerable and to continue to do what you are doing for him.  I would have to help him to express his emotions deeper than the surface.  She said when dealing with him I should work at understand his emotions, not his words, and then recommended I read a book, You Can Heal Your Life, by Louise Hay.  She mentioned she thought that there was a time of great change around this kid a few years ago, and that there should be a leveling off in his issues.  She said she felt I had a tremendous love for my kids.

She thought I felt an extra drive and push to weed people out of my life right now and that I was learning to say, no and I should bring healthy minded people into my life. So doesn’t everyone donthat all the time? She mentioned that in the spring I might have a chance to get away with my husband and I should go.  That I found interesting because we are planning to get away, overnight, without the kids.  Need I say more.

We then chatted for a minute about why I chose her and we discussed that New Yorkers can pick each other out even if we have been transplanted.

I have to say I was nicely surprised by my reading.  She didn’t tell me anything I did not know about my life but I have to say I felt cheered on to continue doing what I have started.  It was an experience I didn’t expect.  It was not hokey or weird in the least, nor did I feel scammed.

Would I pay my own money to have a psychic reading? Probably not, but if I were going to I would pick Sedona again.

By the end of the week we should be more sure about the date on an appointment for Ryan with the developmental pediatricians at CHOP for the suspected PDD diagnosis.  Last time I called them they reassured me that we would be hearing soon, so I went back to doing what I do so well, wait. They told me that is I did not hear from them this week, I should call.

We also were told this week by the school district of Philadelphia that there will be no summer school this year.  Summer school in July went a long way to help Ryan with his reading.  I felt so let down by the school district again and plan to meet with part of Ryan’s team who is a resource specialist about academic based camps that may spring up in the wake of summer school being canceled.   I have to find something because at this point Ryan, who started first grade with a two year reading deficit,  is only one month behind.  A long summer without help in reading will really throw him behind.  Then again, at this point I am used to the School District of Philadelphia throwing us under the bus.  Well, at least next year they can’t throw us under the bus because there is not going to be any bus service in the city.

To finish off the story of waiting.  Aaron was told in November 2010 that he may be outgrowing his egg allergy.  Yes, that was 14 months ago.  Well, as of now his appointment is a mere 84 days away.  Being able to consume egg will really change the food options in my house.

For now, I am trying to remain patient.

********************************************************************************************************************************************************

I have always flirted with things that were not socially acceptable.   I did drugs, but I dabbled, never wanting to get caught in their net.  I smoked, but for less than five years and I quit once, and stayed quit.  I drink alcohol and in the past I have had times of excess,  but these days most weeks I have a small glass, five ounces, of beer as I count my tips at the end of my bar shift, or occasionally a few drinks on the weekend or on the rare occasion I actually go out.  I flirt with these things but I never wanted them to be a daily part of my life because deep down next to my punk rock rebel liberal heart, I am a good kid who follows the rules and luckily is not an addict.  I always found a strange attraction to the darker things but I like to be more of a voyeur than a participant.  The people I let really close to my life were usually quite stable, although different.

When I returned to the bar, after being away for seven years it took a long time to adjust to my Mom/Dive Bar Bartender life.  At first it felt so wrong.  How could I, the Mom of two very young children, choose night after night to make a living in this den of debauchery.  Not many of my other 40-something Mom friends could say they knew a large group of addicts who used daily.  I have befriended a gang of young single guys, who at times remind me of the male equivalent of Carrie Bradshaw and her friends minus the shoes and glamor. I get the the ongoing saga of Sex and the 20-something single guy weekly.  I love to listen to their alcohol fuel stories and adventures as they enter adulthood.  Now I can’t imagine not visiting this world and interacting once or twice a week.  I was never a bar person, I rarely ever go to bars, I work in them.  When my husband and I were in the band we played in bars, worked in bars, and on our days off did anything but go to a bar. We were never bar people.  I like bars, but really I prefer to work in them, not patronize them.

I keep the chaos of the bar far far away from the wholesome chaos at home. I have seen what the excess of bar life does to a person and I know too many people who have died before their time because of substance use.  My kids met a few of my co-workers and developed friendships with them.  When the boys were little we only had one car and my husband worked downtown.  I would commute in with the boys, pick up the husband, he would drop me off at work, then he would drive home, and take over evening baby/toddler duty.  When we were potty training, this could be a long ride for the boys small bladders so I would bring the boys in the bar, use the rest room, and they would be off with their Dad.  These days they don’t come to the bar at all except, if we happen to walk past, or need to store something in the fridge as we go on an adventure.  They don’t need the gritty chaos of the bar to interrupt the wholesome chaos of their childhood.

Thursdays I enter the bar and sigh, happy to escape the world of wholesome chaos and special needs at home.   I love working Thursdays.  Thursdays are full of youngsters full of potential for the freedom of the weekend and great regulars.  I like my co-worker and the crowd is usually fun.  For a long time I wanted to work more Fridays.  They are the big money maker.  Last night I discovered in the desperate eyes of a drunk why I really should not have them.  People arrive fresh off a long week at work.  They are short tempered and hating their life, boss, significant other, the world.  They walk in order a beer and a double shot.  Before I ring them up they want another, then ask for another, and another, getting angry I can’t be their own personal alcohol goddess in a room full of people wanting the same thing.  By 10pm I was ready to be back in the safe haven of the wholesome innocent chaos at home.  I got through my shift through happy to be done, I came home and snuggled my sleeping husband a little closer after scrubbing the bar from my body in a long hot shower.

This morning  I was awakened by Aaron in his full on 6 year old glory.  He was clad in skull and cross bone footie pj’s.  He was so excited that it was snowing and his chatter went on and on about sledding and snowmen.  I asked him about karate lessons the night before, and he went chopping and kicking across the room and told me the Korean words he learned.

I was so grateful that this is my life all the time.

Hey, at least I got a nap.

Stop SOPA, because the internet is a gorgeous place were the world is a free for all of thoughts and information.

Read this about it.  My bud Charlie says it better than I can. I love his anology about a farmer, the wolf, and the sheep.

Then Wikipedia can give you ALL the nuts and bolts.

I have a feeling the next 63 days of winter will be spent with my nose to the grindstone, interacting with all of you online, the teachers, coaches, and therapists.  Now I am cold.  Retreat to bed is in order.

Ryan, since he could walk, has been a fright in crowds.  He gets a crazed look in his eye and starts running about and behaving inappropriately by running away, annoying,  hitting me, his brother, or whomever is closest.  I have tried here and there over the years but I avoid crowds.

A friend was in town and we decided to go to the Please Touch.  I was going to go later in the afternoon when it might have been less crowded.  The friend was leaving town so we went early.  Ryan was being oppositional on the way to the museum and when we went in he ramped it up.  The placed was full, fuller than I have ever seen, and he started really acting up.  I tried stopping him and slowing him down.  I thought we probably were not going to last a half hour.  Suddenly, he calmed down and started behaving appropriately.  He played with our friend and his brother and he was no more out of control than he’d be on my front lawn.  I am not sure if he adjusted to the sensory overload or he is starting to be able to filter out all the input while in a crowd.

Whatever it was, we had a great time.  Was this a fluke or can I actually consider going to crowded places with my kids?

I am off because we have TWO swim meets this weekend.  How could I miss moments like the one below.  Aaron just had his fastest time in freestyle ever by 2 seconds which is a ton in swimming and he nearly beat Ryan.

Suddenly my sisters kids are grown.

My oldest nephew recently was between places to live and spent a ton of time with us.  He has grown into a hard working young man.  He he has a lovely woman in his life and they are so in love.  They are talking marriage.  It freaks me out the baby I held in my arms is all grown up, a college graduate, with a real job.  How did that happen?  Over Christmas my husband and I went out with he and his girlfriend and had an amazing time. His girlfriend is smart, driven, and down to earth, just like him.  It freaks me out to think in a few years time I could be a Great Aunt/Aunt to his children.  The thought of it makes me quiver.

My niece is a sophomore in college. She is an amazing swimmer and she competes in long course races where the race is 50 laps or something crazy like that.  She is a typical college kid getting in a little trouble here and there but a great kid.  Over Christmas her first real boyfriend came to town.  As she showed him Philadelphia, she showed up at my door as we were cooking allergen free food to freeze for Aaron.  The boy seemed to take the unconventional aunt and uncle with the wild kids in stride.  I would of never showed up on my aunts doorstep with a boy friend and it warmed my heart that she knew it would be ok to show up whenever she needed.

My sisters middle son has ADHD.  He is a wild man, so much like Ryan.  He is, and had always been very close to my husband.  He has said many times over the years to my husband, you are not an Uncle you are my friend.  He recently graduated college where he played lacrosse on partial scholarship.  He is like a big puppy and regularly when he was a kid and teenager I had to remind him to not make love hurt.  He is a sweet kid with an abrasive outside. My kids were born when he was a teenager.  He used to call them “it” in the most loving way he could. He loves metal and his first hardcore show was an all ages show with Thorazine and Gang Green.  He likes to introduce me as “this is Jo-Anner, she rocks harder than any woman ever and loves kids”.  Colin called me today.  He had a friend visiting and he was going to be in the city.  He wanted to come to the bar and visit but I am not working.  He is not drinking and is in training because he was invited to try out for the Denver Outlaws and the Chesapeake Bayhawks professional lacrosse teams.  He is finishing his rehab on a shoulder that he had surgery on in the fall, but he is in full on training mode.  On the phone this afternoon his excitement was so earnest and childlike but adult at the same time.  I must have told him how proud I was about twenty times.

I am proud of all of them.

I am a parent that sends her kid off to school daily with the almost imperceptable nagging feeling that he may not come home.  I am not worried about natural disaster or violent event.  I worry he may eat something he is allergic to and will have a life threatening reaction and the adults who take care of him won’t know what to do in time.  It happens.  In the next paragraph you can read about four kids who did not make it home after school due to their food allergies.  Most had a 504 plan in school like my son Aaron does but when the time came the kids did not get their live saving epinephrine in time.

Please sign this petition on Change.org in support of the Emergency Access to Epinephrine in Schools Act.  This is legislation that would help put lifesaving medicine in the hands of school personnel and help protect millions of children in the U.S. with potentially life-threatening food allergies – as well as others with undiagnosed food allergies.

In honor of Sabrina Shannon, Megan Ayotte Lefort, Katelyn Carlson, and Ammaria Johnson who died of their allergies, children in schools should be given access to life saving epi-pen injectors in the event of an allergy whether there is an action plan in place or not.

Children with food allergies are at risk for anaphylaxis, a serious life threatening reaction that can rapidly close the airways of a child, causing death. Nearly 6 million American children have potentially life threatening allergies. Many families do not know that their child has a life threatening allergy until the first reaction, which can be deadly if not treated quickly.

This is why it is important to be certain that life saving Epi-pens can be made available at school to all children in the case of an allergic reaction. The lives of the above listed children, and many other children, might have been saved if an Epi-pen was available to them.

I am writing about this today because it incidentally crossed my feed reader the same day Aaron went on his first field trip without me.  His teacher has his epi pen and took the time to be trained in how to use it.  I can’t help but be a little more on edge about my little one today.  Please sign the petition and help make the world safer for kids who may need a second dose of an epi pen to save their lives before they reach a hospital or save a kid whose family never knew they needed it.

Thank You.

2.  We are past the darkest part of the winter.  We are getting ready for swim team and I noticed it is still a little light out.  That and we got our application in the mail for the outdoor pool.

3.  I get very boring when I work from home so much but then again with as much excitement as I have at times, I can dig the boring.

Tonight we start karate in addition to swimming.  Ryan has been asking for a while to take karate, Aaron is not at all interested.  Swim Team is held four nights a week but they ask for a two night a week commitment at the younger ages, but we usually go to swim three to four nights a week.  Karate will have us miss a night of swimming and the other night of class we are off swimming.  The beauty of karate is that we can walk or bike when it is not brutally cold out and I get two days a week I don’t ever have to move the car if  I chose not to.

I sat with Ryan’s counselor in school today discussing his goals over the next three months.  Ryan’s behavior in school is better than at home.  He is off task at school about 70% of the time down from 90%.  At home it is still about 90% and sometimes it is 100%.  It depends on his frustration level and what sensory input is irritating him.  We should be hearing from CHOP this week about our Pervasive Developmental Disorder diagnosis appointment.  Everyone on Ryan’s team is waiting for that.  If and when we get that diagnosis we open up a new level of intervention according to everyone who crosses our path but I am hesitant to believe anything till I see it.  We have our final TSS meeting on the 27th of January.  This is when Community Behavioral Health better known as the grand poobah of TSS with enlighten us with their year long findings.  Along with the Functional Behavior Analysis, I have letters from both his first and second grade teachers, and his behavior charts in school from the past few months.  This is in addition to the mountains of reports and papers I have filled out in meetings, intakes, and from the past.  The counselor left me with a sigh and said, you are one of the most educated and vocal advocates I have ever seen for a kid.  Kudos and make sure you take care of yourself.  That did not leave me inspired but left me drained. Onto better news.

Later we were at swim team.  One of the other parents said to me, your kids are so active and so full of life.  Whenever you guys are not at swim team it is a little bit dull.  Your kids are so visually stunning with their red hair and they both talk to you at the same time, and they always are darting and lively.  She said she thought living in my house must be like a constant party.  I just smiled and said, “yeah you could say that.”  Who would ever think that my skills as a big event organizer would become useful while I parented.

In even better news.  Ryan received his interim progress reports for school.  Ryan’s grades were ok.  The one thing that stood out was his special ed report.  Ryan is now reading just at grade level.  He started first grade a full two years behind in reading.  He caught up in less than a year and a half.  I am so proud.  His improvement in reading is making the rest of the work easier on him and he no longer fights me when we read together after school.  He is still a bit behind in reading comprehension but is at this point, earning an A in reading.  They are not talking at all about taking him out of the small reading group because he is still a few months behind in comprehension, and I am very happy about that.  I really hope we can have the rest of the year with the small reading group.  The program they use for the small group reading is different than the one in the class and it makes more sense to him for some reason.